Hyperparathyroidism and Vitamin D

[dave9136]

I've had 3 parathyroid tests over the last 6 months and the levels have all been high. The last test, the one one with the highest level, was slightly over 100. My calcium is high normal and my vitamin D level is 26, slightly below what is considered the optimal level, which from what I've read is above 30. My endocrinologist told me my parathyroid level is high because I have ckd and my vitamin D level is low. She recommednded I increase my current dose of D from 600 IUs per day to 2,000 IUs per day. I'm currently not convinced that upping the vitamin D will make any difference and may, in fact, raise my calcium level above the normal range. My question... Has anyone taken vitamin D or increased there intake of vitamin D to treat their hyperparathyroidism? And if yes, did the treatment make a difference? Did the parathyroid level return to normal?

Any responses would be appreciated...

[Jayhawker]

I was just diagnosed with hyperparathyroidism this past summer. My nephrologist put e on a medication called Rayaldee to treat the condition. My calcium has stayed in check but my phosphorous elevated slightly at first. It’s now back in the normal range.

Anyway, I’d encourage you to visit with your nephrologist about this as it can often be a secondary issue related to CKD.

Jayhawker

[dave9136 in reply to Jayhawker]

Thanks, Jayhawker... I'm glad that medication is helping you. I actually see both a nephrologist and an endocrinologist. I forgot to mention the nephrologist. They both recommended I up the vitamin D. I'm just curious to see if anyone was or is taking it to treat their hyperparathyroidism, and if they are, if it's helping them.

[HealthBuddyMelissa]

Yes, there is direct correlation between Calcium, Vitamin D and Parathyroidism. You are probably consuming too much Phosphorus and possibly Calcium. Kidneys can not longer properly make activated Vitamin D when you have CKD. I take 2,0000 IU per day, every day. I also watch my calcium and phosphorus inake. Read here kidney.org/atoz/content/sec...

[orangecity41 NKF Ambassador in reply to HealthBuddyMelissa]

I take 2,000 IU of Vitamin D3 a day (plus get sun each day, when possible), per Doctor's instruction as result of bloodwork. I too watch my phosphorus and calcium intake. Have not been diagnosed on the parathyroid but Doctor is monitoring it.

[HealthBuddyMelissa in reply to orangecity41]

yes, as they should be. Parathyroid controls calcium levels in your blood, and phosphorus has to do with that too. It is a complicated thing, but for the safety of your bones it is very important it be monitored.

[SadMad]

My PTH was in the 800s after I have had two parathyroidectomies. Took out 3 glands first time and the last gland the last time and put pieces of it in my arm. My endocrinologist also suggested raising calcium and vitamin D levels and my PTH has improved. My parathryoid problems were the results of taking calcium and phosphorus for years for my rare x-linked hypophosphatemia. One think affects another. Years of blood pressure meds have not helped my kidneys. You are damned if you do and damned if you don't. I quit smoking 8.5 months ago and have gained 20 pounds but my blood pressure is better.

[dave9136 in reply to SadMad]

Yes, it often seems that way, doesn't it. Take a medicine to treat one problem and it creates another, and on and on and on until one day a person finds themselves taking a cup of 12 different medications and having more health related issues than they did before they started taking any pills.

Sorry for all the doom and gloom. Having to take a cup full of pills is just something I'm trying to avoid as much as possible.

[DaveThebe]

The thing is even researchers can’t agree on what an acceptable level of vitamin D is. This article sums up the different opinions nicely.

health.harvard.edu/blog/vit...

[orangecity41 NKF Ambassador in reply to DaveThebe]

Thanks for the Harvard link. Although the article does not mention age (senior) factor, a comment addresses it. It does mention osteoporosis and osteopenia, which older people to do have.

[dave9136 in reply to DaveThebe]

Interesting... Thanks for sharing the info.

It seems we're often told by the medical community that we're never getting enough of this or that vitamin. My dad told me that back in the 1940s or 1950's, it was iron. Eveyone was iron deficient. Then later, at least for men, it was well maybe not. Then in the 1980s it was vitamin E. Everyone was deficient. Then again later, well maybe not. Then it was calcium. Then vitamin C. First, we're told we're all deficient then, maybe not. Now it's D. I'm not suggesting that people shouldn't supplement with D, I'm just trying to illustrate what appears to be a pattern of the medical community telling us one thing one day and another thing the next.

[ashok5085]

My doctor has prescribed cinacalcet 30 mg to control PTH. Check the same with your nephrologist.

[Batsheva in reply to ashok5085]

My nephrologist said something about m thyroid not normal. I came down with CKD about 8 months ago because my kidneys were damaged by a medication Farxiga 10 mg. Not sure of spelling. Anyhow, he put me on calcitriol 0.25 MCG. My insurance told me not to take the Farxiga but stupid me listened to this endo doctor and took it. Anyhow are you cold. Since I got this CKD I am always very uncomfortably cold. I learned a lesson. Be your own advocate and do research and don't blindly trust a doctor. He ruined my good kidneys. I don't have high blood pressure and my diabetes was controlled at at AlC of 5.8. Hope you feel better. Difficult to deal with a chronic illness. Happy New Year to ALL of us

[Mysticlad]

I would try 5000 or 10000 units a day to be honest. Try it for three months and you will be happy you did. 2000 is too low of a dose for CKD patients but then standard dose from most doctors for some reason. I found that 10000 daily brought my D level into the 60s and dropped my PTH lower. No change in calcium which remains in safe range.

[janemery]

I have been taking Vit D-3 for about 10 years. It is one of the best things you can do for your body. Hy heart test are coming back with very good results . BUT it should be D-3. It has also helped my CKD stge 3 B.

[Gmagolf]

I’m thinking the high PTH is causing your CKD. I’ve had 3 parathyroids removed. My doctors all think my CKD was caused by years of high parathyroid. I would suggest an endocrinologist that specializes in parathyroid. It’s not real common and really is a specialty

[dave9136 in reply to Gmagolf]

Thanks for the suggestion.

[Bunkin]

I’ve tried several different meds for my Hyperparathyroidism including vitamin d. Several worked well but I felt it was making my other numbers go off so he took me off. Now I’m doing Cinacalcet. That made calcium too low and phosphorus went up! Now I take Cinacalcet and Tums which is a binder and gives me back some calcium

[renegade70]

i take 1000 iu daily and hyperthyroidism has returned to normal over a few months. good luck.

[dave9136 in reply to renegade70]

Thanks for the info.

[Leihh]

I have been diagnosed with this and have been told to take vitamin d for six weeks, I have read reports of hypercalcemia linked to tinnitus as a first symptom and I was wondering if anyone could please let me know if they have experienced this as I've been trying everything to get rid of it, my endocrinologist was not convinced and said my afib was not related either but reports on the internet says it is, I'm really confused, Thanks for some help

[Ruthy35 in reply to Leihh]

I don't know if you still I. Here but before i had my recent blood tests I had some very weird tinnitus episodes and still occasionally have them but as you saidaune a stomach.of.tbis blood pressure related stress etc.

[Ruthy35]

I'm not sure what that is but I have thyroid issue. My levels really dropped to 23 and the level shows from 25 upwards l. I was out on 40000 iU capsules collecaliferol (plenachol D tablets 1 whole tablet per week for 7 weeks don't know what will happen next or this will become a regular thing with blood tests as well