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I would like to know more about the availability of forteo. I suffer from hypoparathyroidism?

Responses (1)

Inactive 10 Dec 2011

Hello Susan, & welcome to the site. I am confused by your question. Are you looking to take forteo for you hypoparathyroidism ? Is is a drug made for the condition of sever osteoporosis. I personally take it & it is a synthetic hormone made from thyroid & pituatary hormone. It isn't to my knowledge used for your condition. Is this what you have asked? I do know they had to test my thyroid before I started on this drug, & it can have very bad side effects of osteosarcoma. Others have complained about nausea, burning etc... I have not had any side effects at all. I guess before I go on, I need a better answer to your question. Do you have osteoporosis that the biophosphates have not helped? I will try to answer your question if I can if you will give me more info...

susanp68 10 Dec 2011

Hi Mary, it is being used to treat hypoparthyroidism too.I had my thyroid taken out in September and my parathyroids were damaged and haven't worked since. Before Forteo my calcium levels were as low as they could be, I was suffering horrible cramps, my hands and faced tingled all of the time and I was in alot of pain. Forteo has given me my life back.

Inactive 10 Dec 2011

Hi Susan , & thank you for your quick response. I was reading about your condition & didn't see where it was being used for this condition. This is the second off label condition I have seen in 2 days!. Does that mean you are having to pay for it out of pocket too? The other poster is, & I know the expense it can be. Also, will you only be able to take this for the 26 months as for osteoporosis? I sure hope it helps, but would have thought they would have tried other meds plus calcium & large amounts of Vit. D3 first. They don't put out much on off label use info so am glad to hear from people like you. I suppose you have read everything there is about your condition, but am inclueing the DC site on this for you to puruse. Good luck & please keep me infomred about your condition. I find it very interesting, & the use of forteo for it also...

susanp68 10 Dec 2011

My insurance company is covering it for now through the mail order program it is very affordable. My doctor says that he has had patients on it for 5 years or longer, it's really the only thing of it's kind that is available except for the large doses of calcium and magnesium or calcium IV's on a daily basis. None of these are a real option if I am to maintain my lifestyle. Right now I take magnesium (16) 400 mg a day, tums extra stength for calcium (16 a day), one Forteo shot daily, vitamind d (5000BTU), calcitriol, and two booster multivitamins a day. This is pretty drastic but if they would not have removed my thyroid when they did I probably wouldn't be alive today.

Inactive 10 Dec 2011

Wow, that is pretty drastic, I also take all the vitamins & minerals as you. My brother had his thyroid removed, & stays ok with just a thyroid pill he takes daily. I guess I just don't know all I need to know about this or Forteo on other uses than osteoporosis. I have heard that people can get necrosis & something on the order of bones spurs using it longer than necessary...

susanp68 10 Dec 2011

I am sure there can be side effects as with any drug, we can only hope and pray they are minimal because I really don't know where I would be without the drug. Most people who have their thyroids removed don't have the same issues I am having with their parathyroids but it does happen. I wonder if the fact that I was so sick for so long before the surgery had something to do with it... we will never really know but I am thankful for this medicine.

SusanH64 10 Dec 2011

I am in the same boat as SusanP68. I had a thyroidectomy which was supposed to be a ride in the park, and ended up with a trip from hell after they removed my parathyroid gland also. It had been a year now, but I am having a painful time walking. It appears my tendons no longer have elasticity. They will not bend most days. I was completely healthy until this surgery happened. I had in the past walking 5- 10 km and now I struggle to walk my dog around the block. This is depressing! Also I have twitching still in mostly my eye lids. I want my life back, that is why I was asking about Forteo. Susan P, I am really interested in your story. You appear to be much happier and I believe your experience is similar to mine

susanp68 11 Dec 2011

I do have the eye twitching and alot of pain in my legs but to be honest to me it isn't anything compared to the way I felt before the surgery. I spent 9 months in hell with the Dr's adjusting my medications with no relief. I truly believed I was going to die. I had a full blown thyroid storm and ended up hospitalized for 16 days before they finally decided to remove my thyroid. They didn't remove any parathyroids, they just never regained function. Did you know you have 4 parathyroids and you really only need 1/2 one to work to provide you with enough hormone to keep you healthy? I am so sorry SusanH that you are having such a tough time. It's so strange that we have this much in common... my maiden name starts with P but I am married now and it starts with H... that in reality makes me SusanH as well.

heidihoe 12 Dec 2011

Wow! I had my thyroid removed in 2004 with cancer and they accidently pulled out two of the four parathyroid seed like glands, this left me messed up afterwards. It's been 7 years post -op and I am still taking Calcium tablets with vit D every day and was on calcitriol, I have been told running my TSH suppressed by high doses of Thyroxine could damage my body/bones for later life. I have never heard of people with the same problem as I do so HELLO people like me.

susanp68 19 Dec 2011

Hi Heidi, yes there are people like you. Its not something that happens alot but unfortunately it does happen. My parathyroids weren't removed and as far as the surgeon knows they weren't damaged during surgery, they just never worked again. I keep hearing that there is a chance they will work again someday but then again my Dr tells me that the longer I go without them working the greater the chance is that they will never work again. Go figure! Considering the hell I went through before my surgery I would do it all again.

SusanH64 19 Dec 2011

Is your forteo covered by your medical incurance company? If so, what province are you from?

SusanH64 19 Dec 2011

Hi Heidi, I have read that you can functon with only 1 parathyroid. I am amazed you have 2 and still having issues. Do you get your PTH levels check periodically? free discount card

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