Problems with Parathyroid hormone levels ?

[kristina]

Hello,
I have been told that there is a problem with my Parathyroid hormone level of H127,4
and I wonder if anyone here has been told something similar and what could it mean?
My latest blood test result showed a high Parathyroid hormone level at 127.4
This relates to the blood calcium level which was in the normal range at 2.20
I don’t know yet if I could suffer from a Vitamin D deficiency.
Is a high Parathyroid hormone level a common occurrence in haemo-dialysis-patients?
... I checked it out on the Internet and the causes are either primary: overactive gland, commonly due to a none-cancerous-tumour
or secondary: a condition like kidney failure or Vitamin D deficiency that lowers the calcium causing the parathyroid gland to overproduce.
Has anyone had similar experiences or knows more about it  ?  I would be pleased to hear from you.
Many thanks from Kristina. 

[MooseMom]

Kristina, secondary hyperparathyroidism is a VERY common, if not inevitable, consequence of severe CKD/ESRD.

Have you only just now had your PTH checked, even after all of these years with severely compromised kidney function?

I had my PTH checked regularly while I was still pre-dialysis, and while it was elevated, it was not severely so, so I was lucky in that regard.  My PTH is now normal, but I do take calcium supplements that include Vitamin D.

[Deanne]

My whole year this year has been a parathyroid / hypercalcemia nightmare. Like MooseMom said, I think almost everyone with kidney failure develops a high PTH level. Since it's caused by CKD, it's called secondary hyperparathyroidism and it usually normalizes if you receive a transplant. I was "lucky" (not) and secondary hyperparathyroidism turned into tertiary hyperparathyroidism, which means it wasn't going to self-correct in my case. 

Parathryoids tell your bones to release calcium that the rest of your cells need. When the PTH level is high, your parathyroids are telling your body to release too much calcium, making the calcium level in your blood too high, and making your bones weak. If your parathyroid level gets too far above normal, you'll be put on a medication like Sensipar to trick your parathryroids into thinking they've released more calcium from your bones than they have so they calm down a bit. If your calcium level gets too high, other problems and symptoms can result, so it's important to keep an eye on your calcium level. I now think hypercalcemia would be a good form of torture for war criminals.

I had my parathyroids removed about a month ago. It was the only way to bring my high calcium level down. At this point, I still need to be careful about not taking too much calcium and I can't take Vitamin D, because Vitamin D might just put me back into hypercalcemia.

It's great that your calcium level is still in the normal range! You'll want to keep an eye on this.

[Michael Murphy]

As previously stated so well by Moosemom and Deanne this is a problem for almost all Dialysis patients.  For most it's not a problem since it is usually controlled by sensipal.  I am not sure of the relation ship but some how, calcium, vitamin d and other are all inter related.  Periodically either my sensipar or my vitamin d shot I get during dialysis is adjusted to correct changes in my results from the monthly blood tests that are run.  Don't freakout yet.  For most patients a little tweaking of medication to keep the results good is common.  One thing that bothered me was every month if every thing was not perfect they would between my doctor the nurse practioner the dietician and the charge nurse make me nuts about a small change.  Then I found out that they are required to create a plan to correct these changes and that was the driving force behind the monthly tweaking.  In short it's probably ok and don't worry until they start talking about removing your para thyroid.  That seems to happen to the few patients who have severe side effects to sensipar.

[MooseMom]

Kristina, vitamin D helps the body absorb calcium, so once you have labs run to see if your vitamin D levels are low, you'll have a better idea if you need to do anything.

To reiterate something Deanne posted, hyperparathyroidism can be dangerous because the of the resulting leeching of calcium FROM THE BONES.  If a CKD/ESRD patient has both high PTH and high calcium, this means that the body is taking that calcium from the bones, not just that he's eating too much milk and cheese!  So, that raises the risk of osteoporosis.

So if, as you say, your calcium levels are OK, then I doubt your docs will be too concerned.

Still, let us know what you find out!

[kristina]

Thank you very much for your kind explanation MooseMom, Deanne and Michael Murphy,
it is very much appreciated and I also appreciate your kindness in sharing your experiences.
My PTH has been checked-up during many years before and it was always alright ...  until now...
... and I have been wondering if there is anything I can add to my vegetarian diet in order to keep my PTH-level  "in check", 
instead of eventually starting with "Sensipar"? Could there be a dietary way forward?
Thanks again from Kristina.

[Deanne]

I asked about dietary changes and was told there's nothing that can be done about lowering the PTH level outside of medication or, in extreme cases, surgery. Dietary changes will help with regulating your calcium level, vitamin D level, and phosphorus. Keep a close eye on these and adjust your diet as needed to keep these under control.

[kristina]

Thanks again Deanne,
... I shall ask the doctor about it because I wonder why my PTH-levels have been so "good" for so many years
and now all of a sudden there is a question about it and I wonder how come, because nothing in my vegetarian diet has changed...
Thanks again from Kristina.

[Michael Murphy]

The problem with your pth is the kidney is a busy little organ besides filtering your blood it also monitors your hormone levels and signals other glands to produce either more less of certain hormones like the para thyroid which becomes hyper active and begins to flood your body with PTH.  For most people sensipar controls this without side effects.  Only one patient in the clinic I go to had stomach problems and he had to have the parathyroid removed. I started out on one pill a day.  Now after 18 months I take it 3 times a week.  There was a several month period of adjusting the amounts then ever since I been on this schedule.  The only other change was I used to take my medications at the start of my day and the taking of the sensipar prior to the monthly blood tests were screwing up the results and I was told to switch to taking my pills at night.

[Deanne]

Kristina, your PTH level doesn't have anything to do with your diet.

[kristina]

Many thanks Michael Murphy and Deanne,
it is most interesting what you both say and I am still hoping my Parathyroid hormone level of H127,4 was a "blip" ...
... at the moment I am waiting for my latest blood-test results to check-up again about my Parathyroid hormones 
and hopefully everything has gone "back to normal" again ...
Michael Murphy, it is interesting what you write about changing the times of taking medications ...
I do the same and have noticed that in the mornings my (hypertensive) blood pressure is always a little bit on the low side
and therefore I always take my BP-medication around lunch-time, which is the usual time
when my BP "prepares itself" to become his "hypertensive-self" again...
Thanks again from Kristina.

[iolaire]

Kristina, your PTH level doesn't have anything to do with your diet.

I've been told the same thing by my dietician, when mine gets out of whack the adjust the sensipal.

[Sugarlump]

One wonders if you spent more time out in the sun it would help? since the body adsorbs Vitamin D naturally from sunlight??
My last results were high too (around the 100 mark) but they haven't altered anything. Due another blood test on Monday.

[cassandra]

One wonders if you spent more time out in the sun it would help? since the body adsorbs Vitamin D naturally from sunlight??
My last results were high too (around the 100 mark) but they haven't altered anything.

You'll need a decent kidney function if you want to make the D vits absorbable by your body (vit D-23 or something) so just enjoy the sun for what it is   

Kristina it's Calcium Phosphate product that has to be over 4 when 'they' and you have to worry.

I've changed my Calcitriol, or Alpha calcidol to 100 grams cashewnuts a day as somewhere I read that cashewnuts contain calcitriol (which is the absorbable calcium activated by activated vit D-23) ..My calcium, and Phosphates are okay, and Pth so far controlable with Cinacalcet/Sensipar//Mimpara

[Sugarlump]

Mmmmm cashew nuts much better   

[kristina]

Many thanks again for your kind thoughts iolaire, sugarlump and cassandra,
... The dietician has studied my blood-test-results and told me that my Parathyroid hormone level of H127,4 has nothing to do with my vegetarian diet,
but she has suggested a low FODMAP-vegetarian-diet all the same and at the moment I am trying to understand how to go about this new vegetarian diet ...
... and thank you cassandra for the information that Calcium Phosphate product has to be over 4 for a reason to be concerned...
... Unfortunately, because of "my" Systemic Lupus and MCTD I have to avoid the sun at all times, because otherwise it would cause me severe SLE/MCTD-flare-ups...
... Fortunatly I am now pretty used to the fact that I have to avoid the sun at all times, but after my diagnosis with SLE/MCTD and being told to avoid the sun at all times,
it felt very strange and made me feel sometimes a bit like a member of "Dracula's family"....
Thanks again from Kristina.

[casper2636]

I'm just stumbling on this post now (I hate to be late to the party), but my Parathyroid hormone has gone bonkers since I switched centers 4 months ago. It was just fine fine, then all of a sudden, whoosh...up to 4 times the level...1,411. They are giving me 90mg of Sensipar 1x per day. They haven't tested me since (that was 2 months ago)! I've asked my Neph. and dietician, and they kind of hem and haw me. Why did this happen so suddenly and what are the consequences of such a jump? The Neph. mentioned surgery to remove the gland if it couldn't be controlled, but for such a drastic result, don't you think they would want to keep a closer eye on it? Anyone with info? I hate taking such a strong dose of the Sensipar - it gives me constant cramps in my legs, feet, neck, and hands.

[kristina]

Hello casper,
I am sorry that I cannot assist you directly with your question as such ...
...  in my case the problem was diagnosed as a lack of Vitamin D
 in connection with my kidney failure and dialysis-treatment...
... and then special blood-tests determined, which particular part of Vitamin D I am lacking,
and after that I was prescribed a very mild dose of 20 micrograms Vitamin D3 which I am taking daily...
... In two months time I shall have another special blood test and hopefully the problem has solved itself by then ...
I send you all my best wishes and I do hope your problems solve themselves very, very soon.
Best wishes from Kristina.

[cassandra]

I'm just stumbling on this post now (I hate to be late to the party), but my Parathyroid hormone has gone bonkers since I switched centers 4 months ago. It was just fine fine, then all of a sudden, whoosh...up to 4 times the level...1,411. They are giving me 90mg of Sensipar 1x per day. They haven't tested me since (that was 2 months ago)! I've asked my Neph. and dietician, and they kind of hem and haw me. Why did this happen so suddenly and what are the consequences of such a jump? The Neph. mentioned surgery to remove the gland if it couldn't be controlled, but for such a drastic result, don't you think they would want to keep a closer eye on it? Anyone with info? I hate taking such a strong dose of the Sensipar - it gives me constant cramps in my legs, feet, neck, and hands.

Hi Casper, My PTH jumped suddenly as well, and I didn't switch centres so it's poss. I would definitely ask for a PTH test as 90 mg is pretty drastic. I started with 30 mg, and PTH dropped from 800 to 20. When it'd gone up suddenly I went to 60 mg.

Good luck, love, Cas