Parathyroid Hormone

I go to my doctor on an annual basis for blood work. And everything was great the first year, and the second year, my PTH levels were quite elevated. So the doctor suggested I try double the dose of Lifetime Elemental Calcium for 3 months, then I went back to the doctor and had my levels tested again, and the PTH level was even higher. This hormone regulates calcium in your blood, and if you don't absorb enough calcium, then the PTH level increases, and your blood starts to rob calcium from you bones.  IN non GB people, this usually is accompanied by elevated calcium levels, but mine were on the low side of normal, so it is considered Secondary Hypoparathyoidism.  This can cause a whole bunch of things including heart palpitations.  Anyway, I was then referred to an endocrinologist, who said that I don't have a calcium issue, I have a Vitamin D absorbtion issue. This issue is caused because I don't absorb enough fat. And I know that I don't absorb fat.  I guess this is quite common with GBS patients, and usually doesn't show up until after year two, when the Vitamin D levels get really low.  I am now taking 50000IU of a special kind of D vitamin. This is pharmaceutical grade, and I been taking one a week, for two weeks now.  I guess I shall see what happens.

I have read that it is important for us to take dry Vitamin D.  Is that what you are taking?  The dry vitamins are easier for us to absorb.  I take dry A, D, and E.

The "D" that I am taking is in a capsule form, and it looks liquid.  It is a prescription that has to be filled at a pharmacy. And is a super high dose.

Do you pierce the capsule?  I am taking 50,000IU in prescription form and I have to pierce mine and squeeze it in my mouth.  It doesn't really have a taste, so if you aren't doing that you may want to try it. Darlene

Ask your doctor if the vitamin D that you are taking is in an oily mixture.  I have read that we don't absorb fats very well.  If that medicine doesn't bring your D levels up, you can try dry Vitamin D.  Vitalady.com sells the dry Vitamin D.  Good luck!

I also have an elevate PTH.  I was prescribed 50,000 IU a day, then in 2 months I will get my level checked again.  My pharmacist question the dosage and the Dr said that is the normal dosage for a GB patient.   Kourtney

I've had PTH issues since before GB.  Have you had a bone denisty done?  If not, you should get one.  I'm still losing bone even on Fosamax. 

I tried the Vit D3 for 3 months and had my PTH checked again.  It actually went up and not down.  My rheumatologist is very puzzled as is the endocrinologist.  My calcium has always been normal except several months ago.  I got very religious about my supplements and my calcium was borderline high but my PTH came down.  My endo said it was inappropriately low.  So we go on vacation for 2 weeks and I wasn't very good about getting all the vitamins in.  Had a blood panel done for something else and my calcium was down.  I've got to wonder if my PTH was back up?   Anyway, another issue to address after the pancreatectomy in 2 weeks.

 

I'm on actonel and still losing bone too. I'm 35 and had rny 4 years ago. My calcium levels have always been fine but i had a dexascan last year and it showing that I have the bones of a 75 year old woman. Osteoporosis in my hips and starting in my spine. It was a shocker since my bloodwork has always come back fine.

Jennifer,

Are you seeing an endocrinologist?  If you aren't you sure should be.  There is an injectible like fosamas or actonel that can be given IV.  They are talking about switching me to that.  That eliminates the malabsorbtion issue.  Is your PTH elevated?  Are you getting enough Vit d?  I take a liquid calcium with vit D and magnesium.  Both help you to absorb the calcium better.  And calcium citrate is needed for the acid since we don't have much anymore.

 

I just started to see an Endocrinologist, and he has me on 50000 IU's of D. He explained that most GB patients do not absorb fat well, if at all. If you don't absorb fat, you don't absorb vitamin D, and so therefore you don't absorb calcium. He upped my dosage of vitamin D. I am also considering using a tanning bed a couple of times a week for 10 minutes, just to get in a bit more UVB/UVA, which would help. Living in Seattle, we don't get much sunshine through the winter, and I work all day, so don't get alot of sunshine there either. I have just started the D, and will be getting my blood tested again in 6 weeks. He said I was to take it with a meal, perferably one with a bit more fat in it. So I usually eat some cheese then take the pill.