Hyperparathyroidism

[gigantor98]

THis may have been mentioned before not sure. I have to meet my endo next month about hyperparathyroidism HPERTH for short. He says celiac disease destroyed one of the glands if not all won't know til futher testing. I have to come to a decision in July of who I want in my area to cut on my neck. Sounds appealling doesn't it? He was giving me this long of to make some decisions and to see how I would progress on the diet. Just those words makes me think that there might be hope for a reversal of this HPERTH conditon. I do not know. What I find on the internet is that in all cases surgery is a must. I have read the latest surgery that the do which is called the MIP. This eases my worries some but I was wondering if anyone out there has this condition and can being on the diet, eating healthier, excersize, and vit. intake could heal this crazied or crazy glands? If there is another alternitive I would love to research this to take to my doc. for his in sight. He is a really smart guy and I like him and feel comfortable talking with him about an alternitive if there is one. I just can't find it. Can some one help.

THanks

[Roda]

I don't know much on the subject just a little when my endocrinologist ordered parathyroid tests. You need to find out if it is primary or secondary hyperparathyroid. I think that may make a difference, but I'm not sure. Here are a couple of links I found

Open Original Shared Link

Open Original Shared Link

P.S. my test came out all ok

[GFinDC]

Hi Gigantor,

I really think it makes sense to wait on thyroid surgery if you can, and give the gluten-free diet a longer time to work. It can take a while for the body to adjust and stop making antibodies after the gluten is removed. Plus you are new to the gluten-free diet and it is easy to make mistakes and get a little gluten here and there.

I don't have Hashimoto's Thyroiditis myself, but there are people on the board who do. I do have a thyroid cyst and a couple thyroid nodules. I have had those for a good while now and am still kicking. Got the stubbed toes to prove it. It seems to me as long as the thyroid is not cancerous, that it makes senes to try to keep it, especially the parathyroids. My doctor told me that when they do a thyroidectomy they usually leave the parathyroid glands intact.

Anyway, search on Hashimoto and you probably find some threads on here about it. That may be what you have. Hashimoto's is an autoimmune disease that attacks the thyroid. I believe, (perhaps wrongly), that Hashimoto's might go into remission if you can maintain a strict gluten-free diet. Seems worth a try at least.

Personally I am trying to hang on to my thyroid for a while longer. I kind of got used to having it there.

[Gemini]

THis may have been mentioned before not sure. I have to meet my endo next month about hyperparathyroidism HPERTH for short. He says celiac disease destroyed one of the glands if not all won't know til futher testing. I have to come to a decision in July of who I want in my area to cut on my neck. Sounds appealling doesn't it? He was giving me this long of to make some decisions and to see how I would progress on the diet. Just those words makes me think that there might be hope for a reversal of this HPERTH conditon. I do not know. What I find on the internet is that in all cases surgery is a must. I have read the latest surgery that the do which is called the MIP. This eases my worries some but I was wondering if anyone out there has this condition and can being on the diet, eating healthier, excersize, and vit. intake could heal this crazied or crazy glands? If there is another alternitive I would love to research this to take to my doc. for his in sight. He is a really smart guy and I like him and feel comfortable talking with him about an alternitive if there is one. I just can't find it. Can some one help.

THanks

It may be a good idea to have one of your glands, the defective one, removed. There are 4 parathyroid glands and almost always, it's just one that goes wonky.

It can affect your blood calcium levels and this is considered a life-threatening condition. The reason for my advice to have the surgery is because it's minor surgery and no big deal....really. My father's wife just had one of hers removed and 1 month later, you cannot even see the scar she has. It's a very small scar too so do not worry about this part of it. If your blood calcium levels are rising, I would not hesitate to have the surgery. It's day surgery and they send you home the next morning!

[gigantor98]

Thanks for the responses. I have the primary HPERTH. I know that they may share part of the name (thyroid) put the function of the parathyroids are completely different from the thyroid. I think I am going to ask the doc that he hold off of the surgery if my levels of calcium had not increased. I may also ask him for a bone density test just b/c that is a test I have never taken before and I have always thought my bones are week and not strong. But we will have to see. Everything just keeps pointing to the one thing I am trying to avoid so please just pray for me if you will while I wait til July. I will keep you posted to see if my levels have decreased and if the diet is doing its job. Thanks so much for all of your responses. I get more help from here than any one from the medical community.

[deesmith]

Thanks for the responses. I have the primary HPERTH. I know that they may share part of the name (thyroid) put the function of the parathyroids are completely different from the thyroid. I think I am going to ask the doc that he hold off of the surgery if my levels of calcium had not increased. I may also ask him for a bone density test just b/c that is a test I have never taken before and I have always thought my bones are week and not strong. But we will have to see. Everything just keeps pointing to the one thing I am trying to avoid so please just pray for me if you will while I wait til July. I will keep you posted to see if my levels have decreased and if the diet is doing its job. Thanks so much for all of your responses. I get more help from here than any one from the medical community.

I don't know if this will help you or not. I saw Dr. Green from the Celiac Center at Columbia University. He checked my PTH levels and it was way, way off. He said my parathyroid gland basically shut down and my body wasn't producing much calcium anymore. He explained that because of the Celiac Disease, I wasn't absorbing calcium. So it built up in my system and therefore my parathyroid gland thought there was too much and shut off. So then, because my blood needs calcium in order to function, my blood went to my bones to get the calcium-- leading to osteoporosis. So, at that time, my calcium level in my blood measured close to normal, but that's because it will go to the bones to get enough to try to stay normal. But, luckily, he had checked the PTH levels. But he said there was no reason for surgery because the parathyroid gland just wasn't working. It wasn't because of a tumor that needed to be removed. It was from the celiac diease. He said I would have to take 1600 to 1800 mg of calcium every day, and of course, be on the gluten-free diet the rest of my life.

Also, you're correct in that it is near the thyroid, but has completely different function.

Here's something similar from a link about it:

"There is a growing group of patients who have dramatic life-long problems absorbing calcium in their diet. These patients are now illustrated on our graph in the purple area. These patients have a problem with their intestines that prevent them from absorbing calcium well. Since they don't (can't) absorb calcium from their diet, their NORMAL parathyroid glands will do what they are supposed to do... maintain a proper calcium level in the blood. There is only one thing these normal parathyroid glands can do... all four glands enlarge and produce lots of PTH which removes calcium from the bones--its the only place to get the calcium. The blood calcium is therefore maintained appropriately in the normal range (usually low normal between 8.2 and 9.2, but can be as low as 7.0) at the expense of taking calcium out of the bones. Thus these patients have very significant osteoporosis, high PTH levels, low normal calcium and high alkaline-phosphatase (shows increased bone destruction). These patients do NOT need their parathyroid glands removed. They have developed a total-body calcium deficit due to a longstanding inability to absorb calcium through their intestines." Open Original Shared Link

Basically it is the same thing Dr. Green told me. And it states they do NOT need the gland removed.

Maybe talk with your Dr. about all of this or get a second opinion.

Good luck to you. Also, hope you're taking calcium because the symptoms for this are crappy!

Dee

[Gemini]

I don't know if this will help you or not. I saw Dr. Green from the Celiac Center at Columbia University. He checked my PTH levels and it was way, way off. He said my parathyroid gland basically shut down and my body wasn't producing much calcium anymore. He explained that because of the Celiac Disease, I wasn't absorbing calcium. So it built up in my system and therefore my parathyroid gland thought there was too much and shut off. So then, because my blood needs calcium in order to function, my blood went to my bones to get the calcium-- leading to osteoporosis. So, at that time, my calcium level in my blood measured close to normal, but that's because it will go to the bones to get enough to try to stay normal. But, luckily, he had checked the PTH levels. But he said there was no reason for surgery because the parathyroid gland just wasn't working. It wasn't because of a tumor that needed to be removed. It was from the celiac diease. He said I would have to take 1600 to 1800 mg of calcium every day, and of course, be on the gluten-free diet the rest of my life.

Also, you're correct in that it is near the thyroid, but has completely different function.

Here's something similar from a link about it:

"There is a growing group of patients who have dramatic life-long problems absorbing calcium in their diet. These patients are now illustrated on our graph in the purple area. These patients have a problem with their intestines that prevent them from absorbing calcium well. Since they don't (can't) absorb calcium from their diet, their NORMAL parathyroid glands will do what they are supposed to do... maintain a proper calcium level in the blood. There is only one thing these normal parathyroid glands can do... all four glands enlarge and produce lots of PTH which removes calcium from the bones--its the only place to get the calcium. The blood calcium is therefore maintained appropriately in the normal range (usually low normal between 8.2 and 9.2, but can be as low as 7.0) at the expense of taking calcium out of the bones. Thus these patients have very significant osteoporosis, high PTH levels, low normal calcium and high alkaline-phosphatase (shows increased bone destruction). These patients do NOT need their parathyroid glands removed. They have developed a total-body calcium deficit due to a longstanding inability to absorb calcium through their intestines." Open Original Shared Link

Basically it is the same thing Dr. Green told me. And it states they do NOT need the gland removed.

Maybe talk with your Dr. about all of this or get a second opinion.

Good luck to you. Also, hope you're taking calcium because the symptoms for this are crappy!

Dee

This is all excellent information and correct but usually when the parathyroid goes and calcium levels get too high, it's because of a tumor which can easily be seen with a CAT scan. In that case, it will have to be removed or the condition will get worse. What's interesting, though, is that if there is no tumor seen and the problem cannot be traced to that cause, does this mean people will be suspected of having celiac disease and be screened? My father's wife had a tumor on one of hers

so it had to be removed. Her blood calcium levels dumped down almost immediately, along with her high cholesterol! She was not too happy because, of course, they had her on crappy cholesterol medication and she now realizes she shouldn't have been taking it. Her cholesterol dumped down so dramatically she no longer needs to take meds. She definitely does not have celiac disease or a gluten problem, either.

[mushroom]

Thanks for the responses. I have the primary HPERTH. I know that they may share part of the name (thyroid) put the function of the parathyroids are completely different from the thyroid. I think I am going to ask the doc that he hold off of the surgery if my levels of calcium had not increased. I may also ask him for a bone density test just b/c that is a test I have never taken before and I have always thought my bones are week and not strong. But we will have to see. Everything just keeps pointing to the one thing I am trying to avoid so please just pray for me if you will while I wait til July. I will keep you posted to see if my levels have decreased and if the diet is doing its job. Thanks so much for all of your responses. I get more help from here than any one from the medical community.

It is very interesting that this discussion is taking place at this time. I have just been referred for testing of PTH. phosphorus, and calcium levels, (both blood and urine) with a suspiscion of a parathyroid problem. Symptoms include partial renal failure, osteoporosis (am going to have a DEXA scan, but doc says that a compression fracture in the spine is diagnostic of osteoporosis); previously calcium levels have been normal, but have had high potassium level and swollen joints. Have been fighting renal function, uric acid levels and gout from taking thiazide diuretics and from anti-inflammatory meds. If a do have a tumour of the parathyroid gland I am definitely having it removed from what I've read.

[jackay]

I had surgery for hyperparathyroidism back in April. It was not a fun experience. I research this and from what I read, it sounded like surgery was the only option. I was told the endo I saw was one of the best. He insisted I needed the surgery. I was so miserable that I was willing to try anything for relief. I did a lot of online research and all the symptoms I had could be associated with hyperparathyroidism: headaches, muscle pain, insomnia, weight loss, lack of appetite, anxiety, depression, osteoperosis or osteopenia. The list goes on and on.

All four of my parathyroid glands were enlarged so I had three plus removed. Right now my calcium, vitamin D and parathyroid hormones are slowly rising to normal levels. My phosporus level is high normal.

If you can hold off on the surgery, I definitely would. Did it help with my symptoms? Only a little. The muscle pain in my back is still there but I no longer need to get up every couple hours at night to get new ice packs to lay on. I haven't had follow up dexa scan yet so don't know if my osteopenia is reversing. As for my other miseries, they are still there.

Even after the surgery, I am suppose to be taking 2500 mg. calcium daily also. The osteopath I see is concerned that excessive amount of calcium is going to damage my kidneys. He started me on milk thistle seed extract for that, whcih made me nauseous. Milk thistle seed extract is a supplement that is often used to combat nausea but it did the opposite for me. I had to discontinue taking it. Instead I am taking a more absorbable form of calcium which is a blend of dicalcium malate, calcium glycinate chelate and asparate. I am only taking 1500 mg. of that. I am concerned about kidney damage. My endo said my body would just excrete what I don't absorb and my kidneys would be fine. I sure don't trust that man!

I was told by the endo the remaining parathyroid gland can become hyper and that down the line I may need it removed. If that is the case, I would need to bump up my calcium intake even more. I definitely want to avoid another surgery. I am hoping and praying that being gluten free (soy, dairy and egg free also) will turn my absorption around and I will start absorbing calcium along with all the other nutrients that my body and mind so desperately need.

[jackay]

I see my endo next week and pray that my blood work comes back normal now that I am gluten free. I have so many other food intolerances that may be causing malabsorption.

I found out by running out of my "more absorbable" calcium that it was contributing to my insomnia. So now I am back on 2500 mg. of calcium citrate.

I am really disappointed that the endo didn't suggest that there was a cause for my hyperthyroidism and look for it. Has he no clue? I'm interested in hearing what he has to say when I tell him I found out I am gluten intolerant.

[poppinsday]

I see my endo next week and pray that my blood work comes back normal now that I am gluten free. I have so many other food intolerances that may be causing malabsorption.

I found out by running out of my "more absorbable" calcium that it was contributing to my insomnia. So now I am back on 2500 mg. of calcium citrate.

I am really disappointed that the endo didn't suggest that there was a cause for my hyperthyroidism and look for it. Has he no clue? I'm interested in hearing what he has to say when I tell him I found out I am gluten intolerant.

I have also been diagnosed hyperparathyroid and I am finding more and more that doctors don't know much about this disease. I went on line and found

Dr. Norman. The sight has been very helpful. It is www.parathyroid.com I too am looking for answers!

I have Celiac disease, I had Graves disease so I don't have thyroid glands. This is now another issue to deal with

[Marilyn R]

I went with the surgery at a prestigeous well known clinic after an endocrinoligist and surgeon recommended it. I had immediate relief from pretty horrid symptoms, but high calcium levels returned, as did horrid symptoms. And that was with only 1/2 of a parathyroid gland left!

All of my symptoms have significantly subsibed with a gluten-free/Soy Free/DF diet. I'm absolutely certain that if I'd only gone gluten-free and maybe Soy Free before the surgery, I wouldn't have had to have surgery. My endo and gastro tell me that I'm wrong, and that my diet can't affect my calcium level. I think my WBC chose to attack my parathyroid before going into full blown lupus or MS or DM or cancer or arthritis. I may be wrong, as all of my doctors tell me, but I'm pretty darn certain I'm dead on right.

And Dr. Norman would probably lose quite a bit of money in surgeries if he would recommend that surgical candidates be screened for celiac disease, or try a gluten-free diet for six months before having surgery. What could possibly benefit him and his team in Tampa by doing so? Or all of those other local surgeons?

I've seen posts by people who came from Europe for the surgery in Florida and have recurring high calcium levels. From what I read, Dr. Norman isn't all that nice to people who aren't 100 percent satisfied with the results of their surgery!

I tallied my co-payments and deductibles and insurance payments for the sembasti scan, surgery, etc. It was well over $25,000! There are forums for hyperparathyroidism that won't let you mention anything but surgery. Such a shame, and a sham.

[jackay]

I went with the surgery at a prestigeous well known clinic after an endocrinoligist and surgeon recommended it. I had immediate relief from pretty horrid symptoms, but high calcium levels returned, as did horrid symptoms. And that was with only 1/2 of a parathyroid gland left!

All of my symptoms have significantly subsibed with a gluten-free/Soy Free/DF diet. I'm absolutely certain that if I'd only gone gluten-free and maybe Soy Free before the surgery, I wouldn't have had to have surgery.

What were your symptoms?

I started eating dairy, soy, and eggs again with no problem or so I thought. Two weeks ago my anxiety and insomnia came back. I am now getting about an hour of sleep a night. If my parathyoid hasn't turned hyper again, it will shortly because of the sleep and insomnia.

I see my doctor next week so will have tests done again to see if I do again have hyperparathyroidism.

I am concerned that I am getting cross contaminated. Right now I am off the soy and eggs but am still eating yogurt once a day. I lost 10 pounds in four weeks. With no appetite, yogurt is one food that I feel I want to eat. I hate to have to give up dairy completely again.

[Marilyn R]

Only you, yourself knows if you need to go off dairy.

I don't know ... for me, cc makes me feel a little crappy. If I couldn't sleep for 7 hours out of the night, I'd wonder what other protein my WBC were deciding to attack like Darth Vadar and make myself miserable all night and all day long.

All of my symptoms are neurological, until they go ape. (Anger, anxiety, tingling extremities, insomnia, depression). When they go ape, I have N/V/D. Happily, I haven't gone down that road in awhile. I sure hope you figure out what it is that's getting you. Something is, it is real and it is sucking the life out of you.

I know the sorrow of giving up yogurt and dairy. I'm a farmer's daughter!

Hope you figure it out...best wishes.

Did you go gluten-free/Soy Free/DF before your parathyroidectomy? I really want to know!

[milly61]

Hi, I have just found this forum during a google search for the connection between hyperparathyroidism & celiac.

Two weeks again I had 2 adenoma parathyroids removed - Primary.

 

 Today after my post op visit to my surgeon she tells me my calcium levels are slightly higher than before surgery.  Not good. My parathyroid hormones are good though. She tells me that I must have another adenoma somewhere. 

 

My mother has also undergone  hyperparathyroidism surgery. I am awaiting appointment for the Genetics Dept in April for this very reason.

 

 

 

1 year ago I was diagnosed celiac & have been gluten free since. 

 

At this point I have been told not to take any supplements until I return for a 3 month check up of bloods & urine samples.

 

My question is does anyone know of a direct link to hyperparathyroidisn & celiac as I do not want to go back into surgery! :-(

 

Thank you in advance.