Question - Thyroid

[saman...@verizon.net]

Hi All -   How is everyone doing?   Haven't been on the site in a while but I have a question for the group.     Is there any link to Hypothyroidism and PLD?   Does anyone have Hypothyroidism?   Is anyone taking organic supplementation for it?   Ok talk to you all soon. 

Take Care - Marie Ursitti  :-) 

 

 

On 04/12/13, diane<pld...@me.com> wrote:

 

How very kind you are Paola!

~Diane

On Apr 12, 2013, at 6:40 AM, Paola Viladoms <paolav...@gmail.com> wrote:

Diane: I gave them away to my friends, the artichokes I enjoy them a lot and almost eat them daily.

Take care.

Paola Viladoms

Sent from my iPad

On Apr 12, 2013, at 10:14 AM, diane <pld...@me.com> wrote:

The vegetables look gorgeous. When I am given vegetables that I cannot eat, I prepare them for my husband.

Warmly,
Diane

On Apr 12, 2013, at 3:42 AM, Paola Viladoms <paolav...@gmail.com> wrote:

Thank you!

Paola

Sent from my iPhone

On Apr 12, 2013, at 12:46 AM, diane <pld...@me.com> wrote:

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.
To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.

Dear Paola

These peppers are the type to be avoided. The good news is the included artichokes are excellent for PLD livers.

Warmly,
Diane

On Apr 11, 2013, at 6:58 AM, Paola Viladoms <paolav...@icloud.com> wrote:

Hi, I received this beautiful vegetables from a dear friend, I look at the PLD diet and notice that I have to avoid peppers, are this kind of peppers I should avoid?

<photo.JPG>

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.
To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.
To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.
To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.
To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.
To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

[lori stephanie sase bechok]

Hi friend..!!  I tend to have lower than normal thyroid numbers... not full blown hyperthyroidism but borderline.  Love you Marie xo

[mde...@aol.com]

Hi

 

There is a link between PKD and hyperparathyroidism. As your kidneys pack up with PKD you become less able to absorb Vitamin D as the required hormone is not produced in sufficient quantity. Consequently your parathyroid goes into overdrive and develops hyperparathyroidism. Calcium ends up into the blood stream at high levels and you dont want that. It blocks fistulas and causes Renal Bone Disease which is not pleasant.

 

I have had it for years and take a drug called One Alpha or Alfacalcidol for it.

Mark

[saman...@verizon.net]

Hi Mark,
Ok wow, didn't know that. But mine is Hypo a little approaching. My TSH levels have been trending up for the past 4 years

Marie

[diane]

I think possibly these are  2 different discussions.

PARAthyroid levels are one discussion and

THYROID levels are another discussion

These 2 glands are situated in anatomical proximity to one another, however their functions are not related.

~Diane

[diane]

From eHealth:

http://www.ehealthme.com/cs/hypothyroidism/polycystic%2Bliver%2Bdisease

On Apr, 4, 2013: 

24,946 people who have hypothyroidism are studied. 

Among them, 0 (0.00%) has Polycystic Liver Disease.

With that said since my liver resection I run a consistently subnormal temperature. It is 97.6. I am constantly cold yet my thyroid levels always register normal. 

What are your thyroid function tests values?

Are you treated for this?

I think synthyroid treatment might make one thinner.

Symptoms from Low Thyroid And drugs used for treatment.

http://www.ehealthme.com/condition/hypothyroidism

The Japanese who came to Hawaii following the Tsunami had run out of iodine to take so many were eating toasted seaweed. The iodine was reserved for those closest to the nuclear power plants.

~Diane

On Apr 13, 2013, at 7:58 AM, saman...@verizon.net wrote:

[diane]

I did not have any thyroid treatment.

~Diane

[diane]

PARATHYROID

I was seen by an endocrinologist for High parathyroid hormone levels.

Mine was related directly to diminished calcium intake and post menopausal osteopenia.

After taking 

1200 mg of calcium citrate

 7500 iu of Vitamin D

one month later re-testing of  my parathyroid hormone had returned to normal.

The doctors are hopeful that normal parathyroid hormone for me means adequate calcium intake.

I have consistently 

normal kidney functioning

ow 24 hour urinary calcium

normal vitamin D levels

normal phosphorus

normal serum calcium.

~Diane

[diane]

THYROID

If this were me with a low thyroid level, I would see an endocrinologist for his opinion.

~Diane

[Barb]

You can get iodine in your diet if you eat ocean fish a couple of times a week. Or, you can use iodized salt. 

Barb

Sent from my iPhone

[Barb]

Yes, you do lose some weight when taking levothyroxin vit speeds up your metabolism. Unexplained weight gain was what made my doctor test my thyroid function. 

Barb

Sent from my iPhone

On Apr 13, 2013, at 2:59 PM, diane <pld...@me.com> wrote:

[Barb Seidman]

I have it but it's probably inherited from my mother. The PKD and other related cystic organs do not have anything to do with it. I take 88 MCG (.088gm) of levothyroxin (generic Synthroid) every morning as soon as I awake.
Barb

[diane]

Barb

Is this for the rest of your life? Do you get checked every so often? Have you noticed any long term effects?

How is your body temperature?

How is your skin?

~Diane

[Barb]

I have my thyroid levels checked by my endochronlogist. I was told years ago that cold hands and feet were eogns 

Sent from my iPhone

[diane]

Thank you for letting us know about cold hands and feet.

~Diane

[diane]

I am all for seeking out natural remedies but when we need a specialist I go to see one. Their knowledge just amazes me.

I do not have low thyroid yet I have been always told to limit cruciform vegetables should thyroid difficulties occur. Cabbage, broccoli, Brussels sprouts, turnips, rutabagas, all can interfere with thyroid medication. I have my thyroid checked yearly. Octreotide can alter thyroid functioning.

~Diane

On Apr 14, 2013, at 10:20 AM, Barb <bar...@aol.com> wrote:

[mde...@aol.com]

I have PKD, PLD and Hyperparathyroidism.

 

Mark

[diane]

Sorry you are having difficulties with your 

Parathyroid gland.

~Diane

[diane]

When kidneys fail, they lose their ability to activate vitamin D.  Without  activated vitamin D to control calcium and phosphorus levels in the blood, the  parathyroid gland (PTH) will try to over compensate and  increase its output of PTH.

Parathyroid hormone (PTH) is secreted by the parathyroid glands that are located in the neck near the thyroid glands.

With diminished kidney functioning, the parathyroid glands may incorrectly sense that there is not enough calcium in the blood and produce excess parathyroid hormone which tells the body it needs more calcium. The body then from these high parathyroid levels begins to pull calcium out of the bones and put it in the bloodstream. This sometimes can become dangerous as calcium can be deposited throughout the body on bones, on organs, and more. 

- - - - - 

An elevated PTH is similar to what happened to me with my bones, with my osteopenia. I was not taking in enough supplemental calcium so my 24 hour urinary calcium was low and my PTH, from my parathyroid gland was high. My elevated PTH was my body's way of compensating for me not taking enough supplemental calcium. It was not due to a lack of vitamin D but rather due to insufficient calcium intake. Once I corrected this, all my lab values returned to normal. I have normal kidney functioning. I now have normal PTH levels.

I now take 

1200 mg calcium citrate daily

7,500 iu Vitamin D daily

~Diane

[saman...@verizon.net]

Thanks for all the information guys.     I am going to get an ultrasound of my thyroid to check for a goiter but I don't think I have that anyway, don't have the symptoms of that.  I have other symptoms, like fatigue, hair loss on and off, brittle nails on and off, dry skin,  etc.   I am borderline Hypothyroid.  By TSH levels have been trending up for the past four years.  They are usually under 2 but have been going up.   Wow!  Can't believe my primary never caught it.  She is a bit unconscious my doctor.   I am going to see a specialist one that does more integrative medicine.  Right now I am taking Thyroid Response by the company Innate Response.  It's all organic nutrients.  It contains iodine, Tyrosine, Selenium, amongst other things.   I have mentioned Innate Response before to a few of you.    I am on it a week and already feel better.  And it's not in my head, I know my body very well.  As I am sure all of us do  by now.     The natural way is more for me,  really don't want to take Synthroid.  A few of my husbands sisters have thyroid problems, its inherited in his family,  one of his sister's is on Armour Thyroid.   Armour Thyroid is natural it comes from pigs thyroid.  So I looked into it,  read many, many testimonies on line of patients that were on Synthroid and Armour and they all preferred, felt better on the Armour.   My sister in law also chose that over Synthroid.  The other ones are on Synthroid,  Anyway, I will go for another blood test in 4 weeks.  Will stay on Thyroid Response and see a thyroid specialist.  

 

Marie

 

On 04/13/13, diane<pld...@me.com> wrote:

 

THYROID

If this were me with a low thyroid level, I would see an endocrinologist for his opinion.

~Diane

On Apr 13, 2013, at 9:07 AM, diane <pld...@me.com> wrote:

PARATHYROID

I was seen by an endocrinologist for High parathyroid hormone levels.

Mine was related directly to diminished calcium intake and post menopausal osteopenia.

After taking 

1200 mg of calcium citrate

 7500 iu of Vitamin D

one month later re-testing of  my parathyroid hormone had returned to normal.

The doctors are hopeful that normal parathyroid hormone for me means adequate calcium intake.

I have consistently 

normal kidney functioning

ow 24 hour urinary calcium

normal vitamin D levels

normal phosphorus

normal serum calcium.

~Diane

On Apr 13, 2013, at 9:00 AM, diane <pld...@me.com> wrote:

I did not have any thyroid treatment.

~Diane

On Apr 13, 2013, at 8:59 AM, diane <pld...@me.com> wrote:

[saman...@verizon.net]

Hi Lori!!!!!  -  Love you too!!!!!

:-) 

 

 

On 04/12/13, lori stephanie sase bechok<sase...@gmail.com> wrote:

 

Hi friend..!!  I tend to have lower than normal thyroid numbers... not full blown hyperthyroidism but borderline.  Love you Marie xo

On Fri, Apr 12, 2013 at 7:17 PM, <saman...@verizon.net> wrote:

[lili]

Hi Marie,

I'm hypo. TSH it's not important in hypo. Free T3 and Free T4 are important and Hashimoto antibodies.

I took thyroid porcine since 2010 but I prefer Cytomel+Levothyrox.

Your T3 should be on the high uper range, T4 at the middle. Your blood results can be normal but you still can be hypo. Did you test your cortisol levels? Do you know Stop Thyroid Madness? Endos are not good. Alternative doctors know how to treat thyroid.

How big are your liver cysts?

Lili

~Diane

PARATHYROID

~Diane

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.






Dear Paola

These peppers are the type to be avoided. The good news is the included artichokes are excellent for PLD livers.


Warmly,

Diane








On Apr 11, 2013, at 6:58 AM, Paola Viladoms <paolav...@icloud.com> wrote:


Hi, I received this beautiful vegetables from a dear friend, I look at the PLD diet and notice that I have to avoid peppers, are this kind of peppers I should avoid?










<photo.JPG>




--

You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.













--

You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.











--

You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.












--

You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.














--


You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.


Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.


For more options, visit https://groups.google.com/groups/opt_out.





















--

You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.






--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.
For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

[Claire E-M]

Haven't been on the site for ages and then two topics at once, hope you don't mind guys!!

I have thyroid cysts, does anyone know if these are linked to PLD?

Claire

[mde...@aol.com]

Ive not found any reference to them appearing with PLD. They can of course appear not as a result of PLD.

 

Mark 

Haven't been on the site for ages and then two topics at once, hope you don't 
mind guys!! 

 I have thyroid cysts, does anyone know if these are linked to PLD? 

Claire 

-- 
You received this message because you are subscribed to the Google Groups "PLD 
Polycystic Liver Disease" group.
To unsubscribe from this group and stop receiving emails from it, send an email 
to polycysticliverdi...@googlegroups.com.
To post to this group, send email to polycysticl...@googlegroups.com.
Visit this group at http://groups.google.com/group/polycysticliverdisease.
For more options, visit https://groups.google.com/groups/opt_out.

[Junk Mail]

I have had a "nodule" watched for years by my doctor with no changes. I do have cysts on my ovaries, pancreas, and spleen that is probably associated with my PKD. not sure if it's related to my PLD! I also had breast cancer so I guess my body just likes cysts!

Sent from my iPhone

[mde...@aol.com]

Oaveries is not PKD related but of course like anyone else it is possible to have both PKD and PCOS. PLD, Pancreatic and Spleen Cysts are definitely PKD related as my mother has them. Breast cancer has been linked to hormones which are screwed up by PCOS and possibly liver cysts.

 

Mark

[diane]

I heard an ADPKD lecture long ago that said we are cyst formers, we with ADPKD. This does contribute to cyst formation in other areas including the scrotal area, the brain cysts.

http://www.ncbi.nlm.nih.gov/pubmed/20804098

I have a bladder wall cyst seen on ultrasound. I had enlarged and frequent ovarian cysts. These, I was told due to my ADPKD, to my cyst formation.

To read about where else we form cysts:

http://www.pkdiet.com/pkdSymptoms.php

Have you been tested for the breast cancer gene?

There is the two hit mechanism that comes into play with lung  cancer, ADPLD, and ADPKD. For this reason and to decrease painful symptoms I watch my environmental exposure, avoiding cancer like agents such as bleach.

Warmly,
Diane

[Barb]

Mark, women with PKD are more prone than the general female population to get ovarian cysts, just as men with PKD are more prone to get cysts in their testes. Of course, you do not have to have PKD to get these cysts, but you're more apt to get them. 

Barb

Sent from my iPhone

[mde...@aol.com]

A lot of sites do not list ovary or bladder cysts as being PKD related and of course there are separate conditions causing both including Polycystic Ovary Syndrome. Scrotal area cysts are normally the result of injuries to the region and it is certainly my brother's and a now retired GP's experience. 

Are you saying that bleaches are a carcinogen?

 

Mark

-----Original Message-----
From: diane <pld...@me.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[Diane Smith]

Yes bleach is a carcinogen

Sent from my iPhone 5

~Diane

[Diane]

From Wikipedia

"A recent European study indicated that sodium hypochlorite and organic chemicals (e.g., surfactants, fragrances) contained in several household cleaning products can react to generate chlorinated volatile organic compounds (VOCs).^[28] These chlorinated compounds are emitted during cleaning applications, some of which are toxic and probable humancarcinogens. "

~Diane

[mde...@aol.com]

I think it is important to point out the word probable. Its not definite. It is an interesting possibility and quite what we do avoiding bleaches is difficult. Its all over the place in dialysis units and hospitals. What's worse? A possible risk of cancer or almost definite Ecoli, MRSA and possible Hepatitis and HIV.

 

Mark

[Barb Seidman]

Mark, as many of us have been told by the PKD Foundation, those of us with PKD have increased probabilities of also having cysts in our livers, spleens, pancreas, ovaries, tested, breasts, linings of our brains, testes, and who knows where else. Of course, a person can have cysts in these other organs unrelated to PKD.
Barb

[Diane Smith]

I don't know what to tell you except that I  am sure you will make the best decision for yourself.  Good luck with this Mark. 

Sent from my iPhone 5

~Diane

[Junk Mail]

I was tested for the gene and it was negative. 

Sent from my iPhone

[diane]

Great!

~Diane

[mde...@aol.com]

No! There is more than one gene hence ADPKD 1, PKD 2 and PKD3. The third one is a possibility according to Wikepedia when I looked the other day which took me by surprise.

 

Mark

-----Original Message-----
From: diane <pld...@me.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[diane]

From all I have gleaned from PKD researchers, the PKD3 gene has never been found. They thought there was a possibility with some of us who have PKD on both sides of our family, but that has not been the case.

~Diane

[mde...@aol.com]

The expert that wrote the Wikepedia information said PKD3 was a theoretical possibility but has not been found.

[diane]

Did he happen to say who was researching it?

~Diane

[mde...@aol.com]

If you google polycystic liver disease and all the details are shown on the notes part of the wikepedia page.

[T-girl]

Marie, 

 I am a newbie and thus late to this discussion. I have Hashimoto's thyroiditis and have an underactive thyroid which has been treated for 40 years. It was found to be enlarged before I started college, and I was symptomatic during college, but the thyroid hormone levels were borderline normal and I didn't receive treatment for 4 years. I finally went back to my family doctor with a list of symptoms. He felt my thyroid and found it both large and lumpy and started treatment. I think this was before they were using TSH.

My understanding is that the current thinking is that TSH should be "near" 1, regardless of serum T3, T4, free T3, etc. This is a change from previous thinking, and not all docs are up on the latest.  I was on Armour thyroid for about 10 years and then got switched to synthetic. Some people feel the Armour is better. I was always grossed out by taking cow or pig thyroid. One sister is on it and is happy to be taking it. Another sister and my brother are on the synthetic and happy with their results. Our mom was always on the synthetic and did fine. I asked my provider about Armour and she said the ratio of T3 to T4 in it is suboptimal for humans, though it's right for pigs. She prefers to closely follow the various numbers and specifically prescribe levothroid (or Synthroid) and cytomel in the dosages that get the desired result for each individual. My experience is that I have done fine on both the Armour and the synthetic, though cytomel made me jumpy and sweaty. My thyroid medication dose requires frequent adjustment (based on TSH). Within a certain range, my current provider (nurse practitioner with many years' experience in endocrinology and gynecology) Likes to adjust doses based on symptoms. She says different people's bodies function best on lower or higher levels of thyroid in their blood. "Borderline low" can be fine for some people and too low for others. It was for me. And, though the levels don't look too high, if I'm on the high side of normal I get heart palpitations and other unwanted symptoms. We're all different, but some docs have an assembly line mentality, in my experience. 

In answer to the question about the connection with PLD, nearly everyone in my family has a wonky thyroid, but I am the only one with either PKD or PLD. So in my case, I suspect it's unrelated, without any proof either way.  

Cheers,T-girl

On Friday, April 12, 2013 7:17:14 PM UTC-7, saman...@verizon.net wrote:

Hi All -   How is everyone doing?   Haven't been on the site in a while but I have a question for the group.     Is there any link to Hypothyroidism and PLD?   Does anyone have Hypothyroidism?   Is anyone taking organic supplementation for it?   Ok talk to you all soon. 

Take Care - Marie Ursitti  :-) 

 

 

On 04/12/13, diane<pld...@me.com> wrote:

 

How very kind you are Paola!

~Diane

On Apr 12, 2013, at 6:40 AM, Paola Viladoms <paolav...@gmail.com> wrote:

Diane: I gave them away to my friends, the artichokes I enjoy them a lot and almost eat them daily.

Take care.

Paola Viladoms

Sent from my iPad

On Apr 12, 2013, at 10:14 AM, diane <pld...@me.com> wrote:

The vegetables look gorgeous. When I am given vegetables that I cannot eat, I prepare them for my husband.

Warmly,
Diane

On Apr 12, 2013, at 3:42 AM, Paola Viladoms <paolav...@gmail.com> wrote:

Thank you!

Paola

Sent from my iPhone

On Apr 12, 2013, at 12:46 AM, diane <pld...@me.com> wrote:

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.

Dear Paola

These peppers are the type to be avoided. The good news is the included artichokes are excellent for PLD livers.

Warmly,
Diane

On Apr 11, 2013, at 6:58 AM, Paola Viladoms <paolav...@icloud.com> wrote:

Hi, I received this beautiful vegetables from a dear friend, I look at the PLD diet and notice that I have to avoid peppers, are this kind of peppers I should avoid?

<photo.JPG>

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

For more options, visit https://groups.google.com/groups/opt_out.
 
 

--
You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease?hl=en.

[diane]

Hello Marie,

How are you doing otherwise post liver resection?

I constantly run a subnormal temperature and I am always cold but my own thyroid functions fine. If you have thyroid abnormalities consider laying aside cruciform vegetables for these can interfere with thyroid medications.

Warmly,
Diane

[diane]

Hello T-girl,

sorry to hear you have Hashimoto's thyroiditis. Is this an auto-immune disease like Crohn’s?

http://www.mayoclinic.com/health/hashimotos-disease/DS00567

I have heard that Hashimoto's thyroiditis sometimes can spontaneously disappear. There was a woman in India who had a spontaneous remission. My step-daughter also experienced a spontaneous remission. I think Hashimoto's thyroiditis might be something to consider bringing up to Dr. Torres on your Mayo visit.

I think cold, and low core body temperature might be related somehow to a liver resection. I do not remember having these symptoms prior to my liver resection but then again this is the slimmest I have ever been in my life.

Are there any with a sub-normal body temperature?

Warmly,
Diane

[T-girl]

Diane,

 I have a consistently low body temp, and it can go even lower if I am under the weather. I feel feverish at 98.6 and if it is that high, I generally have an infection of some sort, though it is hard to be taken seriously until it goes higher.

Yes, Hashimoto's is autoimmune, and my thyroid functioning seems to be tied to how well the RA drugs are working. The better the control of RA symptoms, the better my thyroid works. I have autoimmune attacks on my central nervous system as well (post TBI), and that responds very well to the chemo for RA. The neurologist sent me to a new rheumatologist when the previous one dismissed this possibility, and switching chemos helped my joints and thyroid some, but really made a difference in my neurological symptoms.

Incidentally, even when my thyroid level was too high and I was sweaty, my base body temp was still subnormal. 

Cheers,

T-girl

[Barb Seidman]

I know of many people with PLD whose thyroids are fine, and vice versa. My endocrinologist believes in prescribing the lowest dose that gets the job done.
Barb

T-girl <tris...@gmail.com> wrote:

~Diane

Warmly,
Diane

<photo.JPG>

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease.

[Barb Seidman]

It might be, although the arrival does not mention it as being autoimmune. Your immune system just attacks your thyroid, making it underactive.
Barb

diane <pld...@me.com> wrote:

Hello T-girl,

sorry to hear you have Hashimoto's thyroiditis. Is this an auto-immune disease like Crohn’s?

http://www.mayoclinic.com/health/hashimotos-disease/DS00567

I have heard that Hashimoto's thyroiditis sometimes can spontaneously disappear. There was a woman in India who had a spontaneous remission. My step-daughter also experienced a spontaneous remission. I think Hashimoto's thyroiditis might be something to consider bringing up to Dr. Torres on your Mayo visit.

I think cold, and low core body temperature might be related somehow to a liver resection. I do not remember having these symptoms prior to my liver resection but then again this is the slimmest I have ever been in my life.

Are there any with a sub-normal body temperature?

Warmly,
Diane

On Sep 21, 2013, at 7:20 AM, diane <pld...@me.com> wrote:

Hello Marie,

How are you doing otherwise post liver resection?

I constantly run a subnormal temperature and I am always cold but my own thyroid functions fine. If you have thyroid abnormalities consider laying aside cruciform vegetables for these can interfere with thyroid medications.

Warmly,
Diane

[diane]

T-girl it sounds like you have numerous auto-immune issues in addition to your PLD. I would hope your visit to the Mayo will give you many needed answers. For some this has worked. For others it has not. Here's hoping you can get this sorted out for yourself very soon. While I have only one issue–decreasing bone thinning in addition to my PLD, it took a fine Mayo endocrinologist to explain it to me so I could really understand the process and I now I have come to realize what I have to do to keep my bones strong and thick. Continue to question as I am sure you do, here is hoping some answers and treatment will be forth coming to you.

Sounds like you need someone special to help you or perhaps this may require many specialists?

Warmly,
Diane

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdi...@googlegroups.com.

To post to this group, send email to polycysticl...@googlegroups.com.

Visit this group at http://groups.google.com/group/polycysticliverdisease.

[diane]

Rheumatoid Arthritis is autoimmune.

Hashimoto's thyroiditis is autoimmune.

Chron's can be autoimmune.

An autoimmune disease is where the immune system of the body is on high alert and it attacks (instead of the proteins of viruses) one's own body organs causing inflammation and difficulties.

I am hoping you are successful to find someone to follow all your difficulties soon.

Warmly,
Diane

[Barb Seidman]

Whoops, I did type "article." Darned autocorrect :(
Barb

Barb Seidman <bar...@aol.com> wrote:

It might be, although the arrival does not mention it as being autoimmune. Your immune system just attacks your thyroid, making it underactive.
Barb

[diane]

I knew what you meant, just thought it odd  that it said arrival. . . 

Warmly,
Diane

[T-girl]

Diane and Barb,

Yep. I am sort of a queen of autoimmune disorders. In my mind, though, it's just one thing: I have a whacked out immune system that foolishly considers various parts of me a threat. The allopathic medical community groups different manifestations of this whackiness together and gives them different names, but to me, it's all of a piece. Fortunately, I don't have Crohn's, though I've had episodes of ileitis since I was quite young, which would be considered Crohn's if it were worse than it is. But my gastritis is probably autoimmune, the achalasia may be autoimmune, if I have gastroparesis (which was probably a misdiagnosis), it is presumed to be secondary to RA, and I have all the symptoms of Sjogren's, on top of the RA, Hashimoto's and unnamed central nervous system assaults. I don't really need to see anyone new about this: I'm receiving the latest treatment, for which I have a four hour round trip each time because no one is yet prescribing it locally and the nearby infusion center can't get clearance to infuse it (black box warning).

 

The possible gift in it is that my, now late, nephrologist suspected that the prednisone I'm on has been providing protection against renal failure. He said it hasn't been explicitly studied, so it's not prescribed for that purpose given its down sides, but inflammation could be what actually leads to the organ failure and prednisone keeps that inflammation in check. My kidneys have looked dreadful for a very long time, but are like the Energizer Bunny and keep going.

The only question I have is why my bones are breaking right and left. Twenty-five years of daily prednisone is more than enough to explain low bone mineral density, but mine is not horribly low and I've been treated for it over the years.  I do have small bones. But 13 fractures in just over 10 years? Thirteen?!? No one has answered that question, nor indeed knows quite what to do about it. If the osteoporosis treatments did more than make the numbers look better, I wouldn't be breaking. I don't know if there's a brittle bone wizard at Mayo or not.

Also, I have had multiple specialists turn cartwheels trying to find the reason for my nephrocalcinosis (on top of the lithiasis), which is apparently separate from the PKD. They each have been put out that no one before them figured it out, but then were unable to do so themselves. In the end they throw up their hands and say "drink a lot of fluids," which I did until I stopped being able to get or keep a lot of anything down.  

I think my expectations for Mayo are realistic: I hope they will be able to offer a reasonable path forward to relieve the overcrowding problem in my abdominal cavity. I recognize that not everyone is a candidate for surgery and that my situation is likely too complicated for me to be a candidate for the pasireotide trials even if I am willing and able to fly to Minnesota every 4 week; and that by itself it is unlikely to make enough difference. I expect neither magic wands nor miracles.

You can just imagine my thrill (not!) when I discovered that my liver had become Gigantor when no one was looking, and was teaming up with Lefty to compress my stomach. I thought I had my hands full, medically speaking, but apparently I was mistaken. Fortunately, I am living a rich and full life and am grateful for every day. My blessings far outweigh my troubles. 

Cheers,

T-girl

[diane]

Cruciform vegetables: cabbage, brussel sprouts, broccoli, turnips, rutabagas, can interfere with thyroid medicine. I take no medicine except for octreotide and my thyroid functioning is normal. Daily I have cabbage juice followed by an apple juice chaser. I find this is the highest leafy vegetable in boron. Boron in clinical trials was found useful for decreasing osteoporosis but the amount of supplemental boron was difficult to titrate for individual patients so I take cabbage juice. It has the added side effect of keeping my hair its natural color.

A friend with a transplant and PKD takes boron supplements and finds this helps his bone thinning related to prednisone.

For a number of years I sort of self treated my PLD because I had been told,

"nothing to do, you are too healthy"

I can now see that was a mistake for me. I have been consulting specialists trying to locate those that resonate with me, specialists that I can trust. In general, for me, the Mayo Clinic is such a place, though the herbalist there, the alternative medicine department there was not a resonator.

Dr. Grantham who founded the PKD foundation (now since retired) has long held that PKD cysts contain inflammation and it is this inflammation that can lead to increased kidney damage.  Dr. Grantham has always felt that if somehow we could get a control on the inflammation we could stop kidney failure. Then I listened to Dr. Greg Germino s lectures on the second hit phenomenon present in PKD, PLD, lung cancers, and more. I have followed the advice of both physicians, staying away from things that can increase inflammation, are carcinogenic, or endocrine disruptors. Then I attended the standing room only lecture giving on alkalizers  by the Tanners. I have tried alkalinity and I have tried to see for me in particular which foods seem toxic to my cystic liver/kidney and I continue to avoid these.

Through the years others have written me asking for the type of diet I follow. To make things easier for my responding to these emails I have published the diet. I think it as  a guide for others to try and see what works  and what does not.  It increases the responsibility we take for our own health. 

In addition to websites:

PLD Liver

PKD Kidney

Recipes

More Details

I am currently working on Alkaline Diet which in addition to a list of 1600 items also will have the reasons something is to be avoided or enjoyed. This is in the works.

Alkaline Diet

I have written 2  small pamphlets  detailing the PKD DIET and PLD DIET available for the iPhone/iPad/iTouch for 99 cents. Upgrades are free. Simply delete the item and re-download. An upgrade is coming.
https://itunes.apple.com/us/artist/danevas/id421678969?mt=11&ign-mpt=uo%3D4

Kindle also has these publications for 99 cents:
http://www.amazon.com/dp/B004QO9UXY
http://www.amazon.com/dp/B004QO9UW0

It is in PDF format for free:
PKD Diet
http://www.pkdiet.com/pdf/lists/PDFpkdiet.pdf
PLD Diet
http://www.pkdiet.com/pdf/lists/PDFpldiet.pdf

I have an app that I am currently working on. It will be released shortly so I and others can easily and quickly search an item to see if it is to be enjoyed or avoided. This is not yet completed.

All I am hoping for is to get information out there for any with cystic organ disease to be able to try to pick and choose to see if any might work as well for you as it has for me. I am 65 (soon to be 66) and in excellent health.

YOU WROTE

The only question I have is why my bones are breaking right and left?

MY ANSWER
Bones can break while taking steroids from osteonecrosis (or lack of blood supply to the bones).  I am so glad you continue to count your blessings.

http://www.niams.nih.gov/Health_Info/Osteonecrosis/

Steroid Medications

Aside from injury, one of the most common causes of osteonecrosis is the use of corticosteroid medications such as prednisone. Corticosteroids are commonly used to treat inflammatory diseases such as systemic lupus erythematosus, rheumatoid arthritis, inflammatory bowel disease, severe asthma, and vasculitis. Studies suggest that long-term use of oral or intravenous corticosteroids is associated with nontraumatic osteonecrosis. Patients should discuss concerns about steroid use with their doctor.

Doctors are not sure exactly why the use of corticosteroids sometimes leads to osteonecrosis. They speculate that the drugs may interfere with the body’s ability to break down fatty substances called lipids. These substances then build up in and clog the blood vessels, causing them to narrow and to reduce the amount of blood that gets to the bone. Some studies suggest that corticosteroid-related osteonecrosis is more severe and more likely to affect both hips (when occurring in the hip) than osteonecrosis resulting from other causes.

Alcohol Use

Excessive alcohol use is another common cause of osteonecrosis. People who drink alcohol in excess can develop fatty substances that may block blood vessels, causing a decreased blood supply to the bones.

Injury

When a fracture, a dislocation, or some other joint injury occurs, the blood vessels may be damaged. This can interfere with the blood circulation to the bone and lead to trauma-related osteonecrosis. In fact, studies suggest that hip dislocation and hip fractures are major risk factors for osteonecrosis.

Increased pressure within the bone may be another cause of osteonecrosis. When there is too much pressure within the bone, the blood vessels narrow, making it hard for them to deliver enough blood to the bone cells. The cause of increased pressure is not fully understood.

Steroids can reduce the body's response to inflammation but they can also increase the risk for further kidney damage. I personally have been told to not take steroids. Even when I had a severe allergic skin reaction to something I ate, I promised the dermatologist that I would meet him at the emergency room if my allergic response did not get better (rather than take steroids in any form.)

 

~Diane

[T-girl]

About those steroids - no one (least of all me) wants me to be on ongoing steroids. But all attempts to even taper down slightly on the dose have met with spectacular failure, partly because there is no alternative. My stomach cannot handle any of the NSAIDs, and it turns out that even if applied transdermally, they have the effect on one's stomach lining. By the time I started on prednisone I was nearly immobile from the pain, swelling and stiffness. I had to wake up to carefully, painfully turn over in bed. In the morning I had to pry my hands open. To walk I mentally said "right foot, left foot," and forced myself to move the indicated foot/leg forward. I had difficulty sitting down or standing up from a seated position. Plus, I had stomach pain from the NSAIDs. I was in my mid 30s. 

Going on steroids (and the various scary and dangerous chemo agents since then) was a decision not taken lightly or with any meaningful alternative. I had already explored every alternative approach available at the time, as I steadily and quickly got worse. I have continued to use complementary medicine and explore alternatives.

There are better medications now than there were 25 years ago, and I think they're now able to avoid getting people stuck on steroids as I am and my mom was. The young rheumatologists don't understand how things were and think it's due to bad medical care, but they can't get me off, either. 

For all that it takes away, the medication has given me a life worth living for 25 years, and I had 15 before my bones started breaking. 

No one has mentioned osteonecrosis. Since it shows on x-rays and I am x-rayed every time I break a bone, I guess I have something new to be grateful for: osteoporosis, but not necrosis.  

(Diane - I love cabbage, but it's high in the sulfur which I am deficient in the enzyme needed to convert to sulfate, so I need to steer mostly clear of the cruciform veggies, in addition to the thyroid medication issues. Boron is contraindicated for people with kidney disease, so supplementation is not a good idea for me. It's tricky! But thanks for all the links. There may be something I can use in there. Right now, my eating goal is to ingest enough calories and fluids to neither dry up nor blow away. My appointment with feeding tube dude is tomorrow.)

Cheers!

[diane]

Has a drug called Tofacitinib ever been tried for your Rheumatoid arthritis? A clinical trial with this drug was just completed. Maybe it is not for you?

http://www.ncbi.nlm.nih.gov/pubmed/24026258

I don't know the  side effects of this drug at all nor do I know of anyone who has been on it.

~Diane

[T-girl]

Diane,

Thanks! This is a brand new one, and I hadn't heard about it before. The good news is that it's a twice daily pill, saving me the long drive and i.v. infusions. The bad news is that it's a pill and thus Medicare Part D, rather than Part B, which means thousands of dollars per year in out-of-pocket costs vs. only the travel costs with my current regimen. As with all of these medications, there are patient assistant programs but they explicitly exclude anyone on Medicare. The side effect profile is similar: suppressed immune system, increased liver enzymes, increased lipids, opportunistic and other infections, GI perforations, and increased cancer incidence; but this one also increases creatinine, as it's partially cleared by the kidneys. Some people die. Also, it causes problems after kidney transplants (not that I'm planning to have one, but I have been protective of my kidneys for quite some time). Charming, though no more so than any of the others. 

Thank you for scouting this out. I like to keep up on developments and hadn't seen this one yet. I'm doing fairly well on my current chemo, which also can be hard on the liver (though not kidneys). 

Cheers,

T-girl

~Diane

To unsubscribe from this group and stop receiving emails from it, send an email to polycysticliverdisease+unsub...@googlegroups.com.

[mde...@aol.com]

NSAIDS should not be taken anyway unless you are on dialysis in which case kidney function is irrelevant.

 

Mark

-----Original Message-----
From: T-girl <tris...@gmail.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>
Sent: Mon, 23 Sep 2013 0:54
Subject: Re: [PLD Polycystic Liver Disease] Question - Thyroid

[T-girl]

Mark, 

The main instances in which I take NSAIDS at this point is for a severe migraine headache, in which case I've found my best response is to take a single 200mg ibuprofen tablet together with a single acetominophen (paracetamol) 325 mg or 500 mg tablet. I realize that one is cleared by the liver and the other by the kidneys, and hope that occasional use will not have a deleterious effect. I will be given acetominophen today before my chemo, and take it from time to time, but since my liver enzymes (other than alkaline phosphatase) are holding up well, I think I'm in the clear here. Thank you, though, for reminding me of the issue. 

T-girl

[diane]

click the underlined links for more information.

Have any tried hot water with lemon juice squeezed in? This is like magic for me. It lessens my headache, stops a cough, diminishes liver aches. I do not know why or how it works for me, it just does.

NSAIDs can harm the liver, but their long term usage can result in kidney damage. A study from Australia. If this were me and I had to take NSAIDs I would protect myself and  have my kidney functioning frequently checked (maybe every 6 weeks?). In between doctor visits I would check for protein in my urine and report this finding to my doctor. I try to stay hydrated. Lately I have been enjoying coconut water over ice. I have noticed that I have not had any Charlie Horses since drinking this daily.

It takes quite a bit for liver functioning to change. These usually are normal with severe PLD and it is for this reason that many doctors tell us that there is nothing to worry about with PLD. 

I am always sure to get my bilirubin checked. In the past sometimes mine has become slightly elevated.

Warmly,
Diane

[Phyllis]

I too have been told to avoid over use of any OTC medications including NSAIDs and acetaminaphen but my nephrologist told me that occassion short term use was okay.  I use it infrequently but I do use both when I feel the pros outweigh the cons.

 

From: T-girl

Sent: Tuesday, September 24, 2013 10:48 AM

To: polycysticl...@googlegroups.com

Cc: mde...@aol.com

Subject: Re: [PLD Polycystic Liver Disease] Question - Thyroid

 

--

[mde...@aol.com]

NSAIDS are the only problem. The other is fine. You can take as much as paracetemol as you want to (within dosage limits).

 

NSAIDS cut blood flow to the kidneys. When this happens more cysts grow quicker.

 

Mark

[mde...@aol.com]

Cysts can block the bile duct. That affects liver function.

 

Mark

-----Original Message-----
From: diane <pld...@me.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

Sent: Tue, 24 Sep 2013 20:10
Subject: Re: [PLD Polycystic Liver Disease] Question - Thyroid

[Diane Smith]

Yes  liver cysts can block bile ducts. This is why for many many years both prior to and after my liver resection I had elevated bilirubin and skin itching.

Sent from my iPhone 5

~Diane

[Diane Smith]

Paracetamol alone can lead to both kidney and liver damage. Paracetamol in the USA is the number one cause of acute failing liver.

Sent from my iPhone 5

~Diane

[mde...@aol.com]

My mum had to have stents in to drain them. The problem developed quickly and she had hell of a time having them rammed down her throat. Luckily recovery was fairly quick (a couple of days).

 

Mark

-----Original Message-----
From: Diane Smith <smith...@mac.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[mde...@aol.com]

Obviously if you exceed the dosage you will run into problems for any drug. Tramadol has been restricted as it was used in a high number of suicide bids. Its a shame because that took the pain away for so many. Once again the minority spoil it for the majority.

 

Paracetemol is the foundation layer of the painkilling wall. I add it to fentanyl, morphine and ibuprofen (yes im allowed to take them as im on stage 5).

 

Mark

-----Original Message-----
From: Diane Smith <smith...@mac.com>

[diane]

Mark I am sorry you have so much pain. This is a shame.

~Diane

[diane]

Yes there are a few here with stents for PLD. It was a stent they were going to place inside me for my second surgery. I developed something called Budd-Chiari syndrome. I decided to try the stair master machine and I was successful in coaxing my body to build blood vessels around the blockage.

~Diane

[Tonya Rasmussen]

I too have elevated bilirubin with low grade fevers and itchy skin. 

Tonya

Sent from my iPhone

[diane]

I am so sorry Tonya that you blockage of your ducts. Is there anything to do?

~Diane

[Tonya Rasmussen]

Diane, 

No one seems to be able to explain to me why I'm having these symptoms but I'm starting to believe it's just symptoms of PLD. 

They run test in me and find nothing but a little elevated bilirubin. They don't give me antibiotics. It just goes away. 

Tonya

Sent from my iPhone

[diane]

Tonya

When I was so ill following my liver resection on one visit about a year following surgery, I stayed at the Mayo for two weeks. I wanted the doctors to see my condition. They would take the fluid off my body and immediately after the excess fluid was removed I was up and out of bed for 12 hours, no problem. As the fluid built back up over time I was in bed more than I was up. I explained this to the doctors and said to them 

"I want to know if this is my life forever?

Am I to be bedridden most of the time?"

That is when they got serious about testing me and considered a second surgery. I just wanted to prepare myself for my future.

As it turned out when the time came around for me to have a second surgery, I no longer needed it. My body had healed. It just took me a long long time.

 I am hoping you too might have a similar result.

Warmly,
Diane

[mde...@aol.com]

How?

 

The bile duct is an internal tube and does not carry blood? I do not see how you could influence the route of blood otherwise I would not have needed a very painful left BVT. I could have moved it myself is what you are saying?

 

According to you then my dad could have rerouted his arteries instead of having a triple heart bypass? Im sure this is not medically possible and it would put a lot of surgeons and staff out of work if it were.

[Tonya Rasmussen]

I too have had multiple stents placed in the main bile duct due to blockage. I had to have a second surgery to repair my bile ducts and make them larger. 

Tonya

Sent from my iPhone

[diane]

Hello Mark,

I am not sure of the comment. Is it this one?

When my mother's albumin is low all that gets done is my mother is told to eat more egg whites and meringues. My mother loves meringues so in a weird way she looks forward to it!

~Diane

On Oct 1, 2013, at 4:09 AM, mde...@aol.com wrote:

I see my last but one email brought no comment Diane.

 

Mark

-----Original Message-----
From: mdebuis <mde...@aol.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[mde...@aol.com]

I see my last but one email brought no comment Diane.

 

Mark

-----Original Message-----
From: mdebuis <mde...@aol.com>

To: polycysticliverdisease <polycysticl...@googlegroups.com>
Sent: Mon, 30 Sep 2013 0:32

[mde...@aol.com]

No. I meant from you re my disbelief in what you are saying.

[diane]

Mark I have written you privately.

Warmly,
Diane

[diane]

I alone did it. I was successful in building new blood vessels around the blockage through exercise. All I was saying is it possible. I was not saying it is possible for everyone. I was saying I did it. I tried it. It worked for me. I had this verified by an MRI. The radiologist sat down with me and showed me on my MRI where my hemi-asygous vein had become really large in its diameter, diverting my blood around the stricture of my vena cava.

I realize it is not possible for older individuals like my step-Dad with heart disease. I have tried to encourage him to walk again with me when I visit but it is too painful for him. It may have been similar for your Dad?

Mark my intention is to let others know there is hope. I did it, perhaps you can give it a try to see if it works for you as well as it did for me. 

I am NOT saying because it worked for me, it will work for anyone. Perhaps you can help me word things differently? I do not want to be misunderstood. I am trying through my use of words to explain things as best I can. Can you consider helping me with my wording? English is not my first language. I had to learn English.

Thanks this is a great discussion.

Warmly,
Diane

On Oct 1, 2013, at 8:48 AM, mde...@aol.com wrote:

Yes it was. What you were initially indicating is that people can divert blockages through exercise by saying what you did.

 

"I decided to try the stair master machine and I was successful in coaxing my body to build blood vessels around the blockage."

 

As a result I asked are you saying that I could divert my blood vessel by exercise and my dad could divert his arteries the same way and therefore thousands of surgeons and staff are employed needlessly. As I firmly believe that exercise cannot divert blood vessels I was questioning your judgement.

 

Mark

 

 

 

http://en.wikipedia.org/wiki/Budd%E2%80%93Chiari_syndrome

-----Original Message-----
From: diane <pld...@me.com>

To: Mark UK Debuis <mde...@aol.com>
Sent: Tue, 1 Oct 2013 16:37
Subject: OFF LIST [PLD Polycystic Liver Disease] Question - Thyroid

Mark I am sorry you feel this way. I am writing to you alone not to the group.  Is this the comment you feel went un-answered by me?

YOU WROTE

How?

 

The bile duct is an internal tube and does not carry blood? I do not see how you could influence the route of blood otherwise I would not have needed a very painful left BVT. I could have moved it myself is what you are saying?

 

According to you then my dad could have rerouted his arteries instead of having a triple heart bypass? Im sure this is not medically possible and it would put a lot of surgeons and staff out of work if it were.

 

Mark

MY ANSWER

I did not respond because I did not understand the question and what it related to. I left it un-answered.

In my own case a stricture of my inferior vena cava, Not bile duct compression, was caused by my own inferior vena cava becoming compressed, it was squeezed by PLD liver cysts. They were surrounding it, compressing it. I had developed post op Budd-Chiari. If a stent is needed as it was thought to be in my case alone, something to have a second surgery to place the stent in my body in place.

I am not sure of the reasons others have had stents placed, but I offer this exercise as a something to try to coax the body to lay down blood vessels, to increase the blood supply surrounding the area, to help heal the area so the body can take over and try to heal.

A deep venous thrombosis is something else. It is something not from PLD but from other things. Some occur spontaneously. In the USA we had a president who needed a balloon placed that would catch the blood clots. He ended up with a massive stroke some years later. The danger with clots is that they can break off and travel to other parts of the body and cause damage there. Oftentimes doctors instruct us to stay very still so as not to break off a piece of clot.

Following triple bypass I have seen some problems from this following the bypass surgery. But these individuals also are placed on limited exercise because the doctors do not want them to further block their heart vessels or a clot to break off and cause lung and breathing problems. My own stepfather has had an angioplasty done on his heart vessels. He has experienced a great improvement from the surgery yet he too is limited in his exercise. It just hurts too much to walk. The doctors explained to him, that his blockage was caused by a life long diet high in saturated fats and that his heart vessels which are very tiny blood vessels had plaque build up very slowly over the years. This is why there was not a sudden event for him.

I WROTE PREVIOUSLY

Yes there are a few here with stents for PLD. It was a stent they were going to place inside me for my second surgery. I developed something called Budd-Chiari syndrome. I decided to try the stair master machine and I was successful in coaxing my body to build blood vessels around the blockage.

~Diane

Yes there are a few here with stents for PLD. It was a stent they were going to place inside me for my second surgery. I developed something called Budd-Chiari syndrome. I decided to try the stair master machine and I was successful in coaxing my body to build blood vessels around the blockage.

~Diane

On Oct 1, 2013, at 5:07 AM, mde...@aol.com wrote:

[diane]

Oh uh, did not mean for this to go to the group.

Sorry I will delete it from the group discussion.

~Diane

[mde...@aol.com]

I do not think it is possible for someone to will themselves to grow new blood vessels or do it through exercise. I may be wrong but Ive not managed it and so many other people haven't either. What's the secret? I had a fistula block up and nothing could be done for it like many others.

 

My father had to be helped to walk again. In his ward walking was the only way he got fed as food was only brought to him for the first 24 hours after the op. That was enough to get him walking as he likes his food.

[mde...@aol.com]

My point is that exercise does not create bypassing. If it did all haemo people would be permanently in the gym, all embolism sufferers and people with blocked arteries would be joining us. They arent because it doesnt work. Bypasses and other surgery is the only way forward the vast majority of the time.

 

In my case knew exactly what the blockage was. My entire lower arm and hand ached and when dialysis was attempted all they got out of it was clots not blood. No detective work needed.

 

One of my former accountancy firm's clients actually designed, patented and distributed an invention to prevent aircraft and transport system acquired DVTs.

  

Positivity is good but being realistic is better

 

Mark

-----Original Message-----
From: diane <pld...@me.com>
To: Mark UK Debuis <mde...@aol.com>
Sent: Tue, 1 Oct 2013 22:06
Subject: Re: OFF LIST

You have to be a detective, a sleuth, and try to figure out where the blockage is and what can possibly correct the blockage. With me the blockage was in my lower half of my body, in my lower inferior vena cava. I knew from my doctor's that I had to exercise my calf muscles, the back muscle of my lower legs to prevent and slowed down blood from clotting there in the lower legs and forming a deep venous thrombosis, deep blood clot in my lower legs. My doctors told me to walk, gently every hour around the house and the rest of the time to elevate my lower legs higher than my heart. I tried this. Then I tried the stairmaster machine. It is machine that rotates like one is climbing up stairs.

When I first started I was so weak. I could only do the machine for 3 minutes and that was really pushing it. I was scrawny only weighing 87 pounds but I continued. My husband helped coax me to continue. Well it worked with me.

I have a very good friend with PKD who has had a transplant. He travels a lot world wide and he has had numerous pulmonary emboli (blood clots to his lung seeded or begun in his lower legs). He tries to remember to exercise his calf muscles during flights but he cannot stop the lower leg blood clots. They seem to happen to him after long plane travel.

I had to chuckle at your Dad having to walk for his food. I too am motivated by the delicious smell of food. It gets me out of bed in the morning.

A fistula is something I know nothing about. You should ask the PKDiet group. Some there are on dialysis. I am not sure why it clots and why it doesn't. I just do not know anything about fistulas, sorry.

~Diane