Permanent Hypoparathyroidism Management

I am 7 months post TT and have ended up having permanent HYPOparathyroidism or Hypocalcimia after my surgery. I have been managing this rare disorder with my Endocrinologist and PCP. I have been on a daily regimen of up to 3000 mg Calcium and 2 .25 mcg Calcitriol just to keep my Calcium levels at 8.6 and finally have my levels staying more stabilized until this last month when I started exhibiting new sympotms as follows, Severe Nausea, fatigue, loss of appetite, heart palpitations, loose pale stools, weight loss,frequency in urination ,muscle aches, head aches. loss of social activities due to not feeling well, no energy, brain fog, low sex drive,etc, anyway was recently hospitalized for the heart palpitations and told the Doc I had Hypoparathyroidism and to check my levels, I did not think my levels were low cause I did not have the typical tingling and Tetany of Muscles associated with Low Calcium levels. So my test results for my Calcium were at 9.8 which is in the upper end of the Normal Range. Which I have not had those higher levels ever before or after surgery. At any rate I followed up a week later with another Doc from my hospital stay and they re -drew the Calcium Labs and they were at 10.8 , which is now really high and he said that is Hypercalcimia and I never increased my Calcium and Calcitriol medicines, so I ask myself, why are they going high and I experienced the same symptoms but worse as above!!!! So that Doc told me not to take my Calcium or Calcitriol that day and have another lab draw in the AM , which it went back down to 9.8, so I looked into the medication Calcitriol or Rotrocal and looked up side effects and warnings of overdose and I had almost every symptom they listed on the overdose section!!!!! I have been taking .25 mcg 2 x daily for 6 months now, now my doc said to take 1 daily. Has anyone else out there had problems with this medication??? or is on it for Hypoparathyroidism??? What are your experiences or thoughts on this. Cause I felt like crap for quite a while!!! But unfortunately this is the only medicine right now for this rare condition!!!

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I too am having multiple issues since my surgery in July 2012. I am taking 1200-1800 mg calcium and 2x day calcitriol.25. I try to eat calcium rich foods and keep the pills to two a day but if symptoms start up I pop a chewy calcium during the day? I found a slow release calcium to take at night since - think about it - you go 5-8 hours without pills or food? So that did help. I am also on a water pill - hydrochlothiazide? (Spelling)? And magnesium 250. Mg 1x day.

I have come to this site as we'll for help - looking for people in Michigan and if there is a Doc specializing? I have not found anyone??

I believe I am now having issues and side effects from the synthroid. I am hoping my current Doc will run some different bloodwork in a couple of weeks.

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Hi Bigredkate,
Thanks for your response, since I wrote this my Endocrinologist got back to me and said to cut back to 1500 mg Calcium daily(instead of the 3000 mg I was taking)!!! and one .25 mcg Calcitriol. My calcium was hard to stabilize for at least 4 months and now at the 7 month it is too high. So I am looking forward to taking less Calcium. I was on such regimen my life is planned around my schedule to take it and then the Synthroid Pill at the end of the night, 4 hours after my last Calcium Pill. I have to look out for my Kidneys and by taking less, this is better as long as I don't have the tingling like I did for months. Now I know the symptoms of Low Calcium and High Calcium, neither one is good of course, so we have to find the Happy Medium, which has been quite the battle for me this year, so hopefully I have hit a point where it will balance out a bit, so I do not experience so many symptoms!!!!I have heard about a Dr.Bart Clarke at the Mayo Clinic in Rochester, MN, that specializes in Hypoparathyroidism, he had a video on You Tube I saw not to long ago. If I continue to have problems I may look him up I am only 2 1/2 hours away from the Mayo Clinic. Good Luck with your condition as well keep me posted for any new ideas!!! I have heard there is a PTH Hormome Replacement Medication on the Horizon called PTH-84 that is awaiting approval by the FDA for our condition, it has been in clinical trials for a number of years now and seems to work for patients. So this is good news for us!!! Take Care!!

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Sorry you are having to deal with this for so long that it looks like it is permanent! You can definitely feel a lot better than you do now if you learn to manage it for the long haul.

It sounds to me like you might be dealing with a lack of frequent monitoring of your calcium levels. You have been taking a whole whooping lot of calcium and while I hate sounding like a broken record, I will say again, when you are on that much you need really regular testing to see what is going on with your body.

If you have not had a recent parathyroid hormone level, with your calcium levels, I would request that ASAP, today, now, etc.....
That will give you an idea if your parathyroids are starting to work again, v.s. you are just taking way more than your body can handle.

You are describing signs of being hyper-calcemic. You need to learn all you can about bringing your level down ASAP so that you do not end up with a kidney stone or worse! (mostly a whole lot of water to flush it out!) You also need really regular testing while you are adjusting meds and supplements DOWN so that you do not go into a hypo state also! If I were you I would request testing at least every other week, if not weekly until you are in the safe range and stabilized again. Or if you can get a standing order test....even better. That way you can monitor your own progress!

The other best thing you could do is to get a doctor that understands this disease. Dr. Bart Clarke is one of the best in the world and if you can get into see him, you will not be disappointed! He is one of the medical advisers for the HypoPara Assoc and is excellent at managing difficult situations.

While this is a difficult and frustrating condition, it is not impossible to get to nearly normal again. You will need to learn all you can and advocate for yourself because as you may have discovered, most doctors don't understand us well. I suggest that you start your learning with the "newly diagnosed" section at the following site....
https://www.hypopara.org/support-services/newly-diagnosed.html

Also just good info in general....
www.hypoparathyroidism.com
This is the site maintained by the company that produces PTH 1-84. It is now at the FDA for approval and could quite possibly be on the market by early 2015 but meanwhile, you have to get through 2014! (I am in a study and can attest to the value of PTH but I also know you can survive on calcitriol and calcium).

This disease will never be a walk-in-the-park but with a little work you can feel a whole lot better than what you are describing! Please ask your questions and know we totally understand what you are going through. Every one of us that has been dealing with this for any amount of time as been just where you are now! Its a "live and learn" kinda thing! :)

Best wishes and hope this helps,
Michele

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Thanks Mazbarth, You are so informative, yeah it's been a battle, I was having my lab draws when I first had this condition after my surgery weekly for a while then every 2 weeks for another 2 months recently every 3 weeks the last 2 months, now with this elevation I had them 3 x this week. I was surprised it went up that much in a few weeks even after I lowered my calcium by 400 mg. I was really sick at the high levels my Nausea was so bad I couldn't hardly do anything but lay on the couch, then heart palpitations set in and I was put in the hospital overnight for observation!!! My Endocrinologist has cut everything in half this week and so far I have not had any low calcium symptoms of tingling , you are right on getting PTH tests again , I have not had them for about 3 months now maybe. By a thread of hope maybe they are coming back. I will definitely have my Doc do them again!!!! I will have to consider seeing Dr. Bart Clarke, I am only 2 1/2 hours away from the Mayo Clinic. I have to get this under control so I can Live again!!! it has been the biggest challenge health wise in my life and I am a grandma now who needs her energy back!!! So thanks again for you information. I will keep you posted and I hope that new medicine gets approved soon!!! Take Care

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Wow! There is definitely a thread of hope that you are coming back! they say you are not permanent until at least 6-12 months, so lets hope you are in the 7-12 month schedule of recovery! :)

but just so you know....lowering calcium by 400 mg is not very much. If you had said a 1,000 then maybe that would be lowering. Cutting the calcitriol is probably even more important. What are you on now for calcitriol?

Make sure you are taking 4 hrs from thyroid and MOST important, no caffeine. That will complicate matters no end!

I think you need to get some answers before contacting Dr. Clarke. Maybe Kim can tell you how long it took to get into see him but meanwhile, you need to get the numbers down ASAP and you will feel better. Lots and lots of water, and look at how to reduce salt and sugar, both which can help to keep the numbers out of balance. also go on a dairy free diet for a while and see if that doesn't help too!

Happy Thanksgiving and hope you are feeling better very soon!
Michele

p.s. PTH will not likely be here for at least a year so you need to get this working again for you!

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At last a ray of hope. I am 4 months post surgery and was beginning to think that I would be stuck on 3000mg Calcium and 500mcg Calcitriol for the rest of my life. Now I know there is hope of feeling well again and of being able to go out without having to check if there are toilets available for public use. I don't know what PTH is but I will be searching for more information when I get home tonight.
Thank you

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Faithbird, I agree with Michele that you should have your PTH level rechecked. It sounds like parathyroid function may be returning for you! Dr. Bart Clarke is absolutely wonderful; if you are lucky enough to get in with him, you will not be disappointed. :) He is expert in all things calcium, parathyroid, and bone related, and besides his expert knowledge, he is a truly kind and caring doctor. However, he travels extensively (almost every week or so), b/c he is invited to give talks all around the world b/c of his expertise. So it might be difficult to get in with him. I schedule my appts with him at least 2-3 months in advance (I travel from a distance, so only see him once a year).

The other thing with regard to your symptoms is, have you had your thyroid levels checked recently? Heart palpitations, loose stools, and fatigue sound like possible hyPERthyroidism (i.e., TSH too low).

liz49, did you mean 50 mcg, not 500 mcg, of calcitriol? 500 mcg sounds like MUCH too high of a dose, for anyone.

Happy Thanksgiving to all,
Kim

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Hope all are having a wonderful Thanksgiving. I agree with Kim also (we usually always do! :) liz49, my question for you....if you are having to find the bathroom regularly, you are quite possibly getting into a hyper state of calcium level. That is a sign of elevated calcium and so you need to take all the advice given to Faith about getting checked and making sure you are not either getting some function back or on just a calcium overload.

Remember the body can only use 500-600mg of calcium every 3-4 hrs. The rest is just flushed or hanging around where it could do damage on soft tissue. Also remember that with lots of calcium you usually can't drink enough water! Many pts I know aim for 2-3 quarts each day although in the winter I am not that diligent and sometimes I pay the price with aches, etc.

so again, please keep a close eye on the levels and get checked for PTH levels. It will give y<ou more info to make informed decisions on!
Michele

p-s- PTH 1-84 goes by the name Natpata and hopefully will be out in early 2015.

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Hi Kim, Thanks for your advice, this has been quite the battle for 6 months now for me, My TSH levels were at 0.95, my Endo says this level should not cause heart palpitations, and I was on 137 mg of Synthroid, but now he has put me on 150mg, to suppress my thyroid levels , my Thyroglobulin tumor marker was at <0.1, the thyroglobulin antibody screen was <20, so he said these were good. So just 2 weeks ago my Calcium was at 10.8 and they had me go cold turkey not taking Calcium and my Calcitriol for a day to bring down Calcium then did a repeat lab again next am and it was at 9.7., My Endo wants the Calcium levels between 8.0 to 9.0. I am due to have all checked again on Tuesday a few more days, to see where it is at. Meanwhile last week my Endo said to decrease Calcium to 500 mg 3 x daily and 1- .25mcg Calcitriol, of course I was nervous and anxious about having my levels drop severely and cause troubles again!!! I have been taking up to 3000 mg of Calcium and 2-.25mcg Calcitriol for about 6 months now and due to the recent high activity has cut all in half. Needless to say this weekend I had low Calcium symptoms and have been on the couch all day feeling like crap, I have had loose stools for about a month or so now and seem to have about 4 to 5 movements a day and I have lost weight now about 7 lbs this month all the sudden. Very, Very fatigued!! No energy and some Nausea daily!!! This has been a bad month for me all of the sudden!!! I will ask to have the PTH drawn again in hopes my parathyroids are trying to turn back on again!!! Thanks for your input Kim and Mazbarth!!! Trying to hang in there, Faithbird.

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I have a couple more questions for clarification of taking thyroid - my ENDO initially told me to only wait 30 min before taking calcium. I have started to wait the 4 hours I see many of you recommending. Does this also apply to dairy foods? Should I not be eating dairy foods for four hours after my synthroid?
Also any of you also going through menopause? My ENDO also feels this has complicated my condition! Any other tricks or tips?
I am usually very active - biking, hiking, walking, working out, cross country skiing,etc. this last year has been tough - I have had many issues- does a product like Gatorade cause some other issues with all the potassium? While hiking I had two 20 oz bottles and several energy chews that were Gatorade products- I then felt weak mid-day and sick - nausea and diarrhea and had a hard time getting out of the woods!

Always appreciative of your responses!

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Hi Bigredkate,
My Endo told me to take my Calcium supplements 4 hours apart from my Thyroid meds, he said that if you have Calcium in your diet sooner than the 4 hours that was Okay. Don't know much about how Menopause would affect our condition, but I am sure it doesn't help since it too, is a hormone thing in our bodies. I just think that having Hypoparathyroidism is messing with our body chemistry and being in Menopause has enough symptoms of it's own, let alone the symptoms we have with Hypoparathyroidism. As far as the exercise, I too am having problems with stamina and fatigue and issues after exercise, I think our Calcium levels drop during the exercise and probably drop a bit low and that is why symptoms show up a little later. It has happened to me every time I go for a walk over a mile, so I have to pop a Tums while I walk or take a little extra Calcium the days I do heavier cardiovascular exercise. I have even had chest pain and tingling in the chest after exercise. My Endo said with this condition we may not tolerate exercise as well and he told me just to do light walking or Yoga. I defineatly don't have the Stamina I used to with this condition.

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Has anyone ever tried bovine parathyroid replacement supplements? I've discovered several online and until the FDA approves a prescription one, I'm considering one I found on Amazon.

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I have researched this, and even tried it, and do not believe it to be of value (it made no difference for me). PTH breaks down in the stomach before it can be properly absorbed in the intestine where it does its work.

There is a study starting in the UK for PTH hormone replacement via a pill but it is a long way from being available. Best to just try to cope in the next year until the PTH come to market.

So at this point, best option is to maximize calcitriol and calcium balance
Best wishes, Michele

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Thanks again, Michele. I was hoping to find something to hold me over until the the PTH goes on the market. Do you know what form it will be in, injection perhaps?

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Yes, once a day injection done in the morning.

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I believe your calcium out put depends on your para thyroid. When they do a TT they try their best to leave them alone, some times one is sacrificed. There are 4 of them. Sometimes they are damaged, aggravated etc and it can make too much calcium, or more likely stop making calcium. Wanting the para thyroid to have time to heal its self and begin working again on its own is the goal. It can take several months. You feel awful if it's low, and if it's high. When low, you are put on a supplement and given blood tests to watch levels. If your parathyroid kick back into working mode, you can end up with way too much. It's a balancing act.

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There are several Dr s in Michigan that specialize in thyroid disorders. Any where from Holland to grand rapids, to Temperance, to Detroit suburbs.

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swoozie64, do any of the doctors in MI specialize in hypoparathyroidism (HPTH)? If so, I would like to get their names to pass on to other patients via the HPTH assoc. (we have a listing on our web site at <www.hypopara.org>)

Thanks! Michele

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Michele, none of the Dr s on my list specify beyond family practice, endocrinologist, obgyn, np, do etc. They are doctors suggested by patients that have thyroid issues that are Dr.s with experience and are willing to test for more than tsh. To be open to the idea of adding t3 only med. Etc. Lists are available for every one to look at on the Thyca pages, and Thyroid Sexy Facebook page. I can cut and paste info to this thread if need be, when I get online with my computer, thank you for asking. The only thing I did with the list, is look up the Dr.s online through Healthgrades website. It shows if the Dr. Has had malpractice suits (in states that it is available) as well if there has been suspension of license, it shows a 1-5 star rating given by patients, shows the Dr s specialty, web site if available, phone number and address etc. I took the info and I'm in the process of putting it together so it reads some what like this
5 Dr. Swoozie H. Homemaker MD. Michigan Endocrine Health Grand Rapids MI
Endo 231-555-1234. Shoemaker.com Yes or Call to see

The 5 is the rating number for the Dr. 5 is very good. Then the Dr name , place of employment, city, state
Specialty phone number of Dr or np pa web site if there Then the last part will either say yes or Call to see. That is in reference to if they are taking new patients. Every list I've seen has been mixed up and you have to scan through to find your state, city. There is not usually a number to call. So I have been working on making the list more user friendly. Eventually I hope it will be put up either here or on Thyroid Sexy. As I have gotten so much info from both places.
The one thing I did not do is call the phone numbers to be sure they are in working order. Or to be sure the professional is still employed at place listed. I did remove a Dr that had passed away. One is listed but has retired. I left it there because if one Dr gets the thyroid connection. Chances are there are others in the office that do too. Another Dr I removed because he had in the past been fined and suspended for criminal sexual conduct with a patient. While he was reinstated, his tasting was very low, women just were not comfortable going to him. We have enough on our plate, we don't need a creeper Dr. (Shudder) any other questions just ask away.
Blessing Terese

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Mm1962 ,last month on Gena Lee Nolins web site for thyroid issues. The paid members were able to do a conference call with a Dr. In the thyroid area. Dr. David Boenstien I think it was. The topic of bovine thyroid was brought up. This is what the Dr. Basically told the caller... due to the fact that bdt bovine desiccated thyroid is an otc medicine, the fda does not have to regulate it. Therefore it will have differing amounts of thyroid in each batch, and potentially in each pill in the bottle. Also bovine thyroid is quite a bit different than ours, where pig thyroid. That is used in Armour and Nature Throid is much closer nearly identical to ours. By self medicating we are also setting ourselves up for crisis.
That made a lot of sense to me. If anyone is interested in listening to the past 2 speakers plus Dr. Wiggy Saunders will be speaking tonight at 630 est. This p a Dr of the website is only open to members only. It cost $4.99 a month. There is forums, (tho much smaller than here) the conference call each month with renown specialist. Gena is working on the area to understand your lab results. If you choose to not sign up for the members only area, there is a free monthly news letter, cooking and recipe area, list of Dr.s , a lot of good information. Blessings,
Terese in MI

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