Removal of parathyroid glands?

[kristina]

Hello,
I have heard that when the parathyroid hormone (PTH) level gets too high (caused by dialysis?) the glands have to be taken out, or at least most of them.
I believe this is because too much calcium is extracted from the bones which, as a result, render them fragile.
I am wondering if there are any recommendable treatments to avoid a parathyroidectomy or is it better to have some of them removed in any case?
Also, does the removal of some glands cause more problems after a kidney-transplant?
I have no idea how high the PTH has to be before one gets concerned.
Any thoughts on this would be welcome.
Many thanks for your thoughts from Kristina.

[iolaire]

Sensipar is the first step to get your PTH down.  I was on 30 mg (during dialysis until transplant and then starting back up again after transplant) and my new endocrinologist said I was not responding to it and started talking about removing the glands, I opted to wait a bit.  Then talking to the transplant team they said that 30 mg is a low level and that some of their patents ended up responding well at 60 mg or 90 mg, so they upped me to 60 mg.  The transplant team seemed to feel similar to me that I should exist all options before talking about removing the glands. I've not see the lab results since.

Of note Aetna well I was on dialysis forced me to use their specialty pharmacy and wanted their nurses to talk to me each month.  I felt it was cost control since the 30 mg Sensipar 90 day supply is something like $1500.  But since transplant (and I'm now on Medicare for the bulk of my expenses) they have continued to let my local pharmacy continue to fill it.

I'm starting to have very cold feet at night when I got to bed, during cold weather, which I think is a sign of the thyroid problems.

[cassandra]

Hi Iolaire, do you take your Sensipar with your main meal? I don't remember if you are still on Prednison, but both really attack your stomach/oesophagus lining.


Hi Kristina, the learned ones want your pth below 60 (uk)


There is a minimal invasive parathyroidectomy (some surgeons in the London area). Which is like keyhole surgery, so I read.
'The learned ones' usually start you on Cinacalcet/Sensipar/Mimpara 30/60/90 mg. Only if that doesn't work will they go for a parathyroidectomy.

[cassandra]

I found this article the best explanation ever about secondairy parathyroid disease


  http://www.parathyroid.com/secondary-hyperparathyroidism.htm

[iolaire]

Hi Iolaire, do you take your Sensipar with your main meal? I don't remember if you are still on Prednison, but both really attack your stomach/oesophagus lining.

I take Prednisone at 5:30 am (and go back to sleep), then take Sensipar with food around 9 am.  Thank you, I'll talk with someone about if I should take it with food in the am.  Right now its part of the big selection of pills taken in that 2/1 hour block where I can not have food.

I've have some stomach issues first visible late 2013 when I had some internal bleeding after a trip to Mexico, the imaging probes didn't see any major issues.  The Sodium Bicarbonate pills I'm on three times per day for blood bicarb levels help to even out things.

I do feel like I have to cut back on the coffee (from two cups/day at work to one) and still have some irritation on weekends when I don't drink coffee.

[iolaire]

Also I should note I had an ultrasound of that area, the tech saw something and pushed hard in that area with the wand, then went to talk to a doctor about it before letting me leave.  I expect that at my endocrine appointment in March they will take about the growth.  I'm hoping that the Sensipar will get things under control and we can monitor the growth (which is common) for many years.

[cassandra]

Hi Iolaire, if poss with the enormous pill load, ask for Omeprazole or Ranitidine.


Also look out for Kuzu/Kudzu in health/food shops, that protects your stomach lining a bit too (it is a finely ground root which I use in my tea and (still) double espresso.


Love, luck and strength, Cas

[Simon Dog]

I found this article the best explanation ever about secondairy parathyroid disease


  http://www.parathyroid.com/secondary-hyperparathyroidism.htm

It's curious how this medical practice is bypassing the Medicare requirement of "no balance billing".  They accept Medicare, but you cannot be treated by them unless you have a separate exam, not covered by Medicare, first (and they caution you not to file a claim.... perhaps because they don't want to be accused of de-facto balance billing).

[SweetyPie]

Hi, I got my parathyroid glands removed in October 2015. My health was bad. Meds weren't working and my bones were getting so bad Couldn't walk much, had to take days off school, and had growths on my hips (calcium deposits) it was a hard and painful time. My doctors didnt think i was eating my meds so they took me off the transppant list (childrrns hospital)  anyways I got a sestamibi scan and my parathyroid glands were over active which means they werent rrsponding to the meds I was taking. There are a total of 4 glands. I got 3 and a half taken out and i was in the icu for about a week on morphine. You're in the icu not because of the surgery but because afterwards your calcium becomes extremely low. One reason why they leave a tad bit of the gland in. Tums is a good source of calcium and u can eat it on the go. I recommend getting the surgery you dont havebto worry about one the expensive sensipar and how much it makes u feel sick anymore. Also you have some more options in your diet.

[Charlie B53]

Had to increase Sensipar from 30 to 60, then finally 90 before my pth begin falling to a more reasonable number.

I was told to take mine in the evenings before bed.  So far so good.

[lulu836]

I was started on Sensipar because of extremely elevated PTH.  I refused to accept the Rx because it is so expensive.  I told my clinic that even if I could afford to have it filled, I would not just on general principles.  I read all the literature available about how the drug was increased in price to ridiculous levels just because it was possible to do so.  About a month later the DON for the clinic let me know that arrangements had been made for a drastic price reduction.  Then I started taking it; 30mg/day.  I took it at night with all my other meds.  About 8 months later I was told to start taking it only on dialysis days after dialysis because it was working too well.  Now I am told that next month the clinic will furnish me with Sensipar every dialysis day so I don't have to fill the Rx myself.  I've had absolutely no side effects from it.

[kristina]

Dear friends,
many thanks for your kind effort in sharing your experiences, it is very much appreciated and it gives me lots to read and learn. Many thanks again!
It is quite strange, but I did quite well on dialysis with my vegetarian diet and strict fluid-restrictions, until a few weeks ago when I started to deteriorate and yesterday & today I feel totally exhausted and it shows clearly, that I am in some health-trouble, just as the doctors told me, when they mentioned, that my PTH is way above where it should be. I very much appreciate your kind input and it helps me to better comprehend this medical problem and hopefully a good way forward is being found soon.
Many thanks again for your kind explanations and kind sharing of your experiences.
Kind regards from Kristina.

[Simon Dog]

Now I am told that next month the clinic will furnish me with Sensipar every dialysis day so I don't have to fill the Rx myself.

Sensipar has been added to the dialysis "bundle" so it is now paid by Medicare Part B rather than Rx coverage.   Us home patients on that drug now get our Rx from the Fresenius pharmacy with no copay.

I refused to accept the Rx because it is so expensive.

But you will accept dialysis at about $300 a treatment 3 times a week??

[lulu836]

Big difference between dialysis which is a procedure and Sensipar which is a drug and is priced by greedy Pharma.

[Riki]

I had 3 and a half parathyroids removed in 2005.  It was a day surgery, and I was in the hospital for 3 days, and that was just because it sometimes takes me longer than normal to come out of anesthetic (am sleepy, and need to stay on oxygen).  I never heard of sensipar till about 2010 or so, and that's only on this website.  I've no idea if it's something that's prescribed to patients here or not.  Mine were removed because my PTH and phosphorus levels were incredibly high.  After removal, the PTH went back to normal, but the phosphorus didn't.  It's only in the last 2 years or so that it's gotten to a normal level