Calcium knowledgable people out there-HELP!

I had my TT exactly 4 weeks ago and was hospitalized after being discharged for low calcium (I was at .9 when I got to the hospital). They discharged me on about 2400 mg of citracal and 8 calcitrol per day. After the second week my level was on the high end of normal so they cut that in half. After the third week it was still on the high end of normal so they took away the calcitrol and I have just been on 1200 mg of calcium (citra cal) per day. My blood tests this week is 8.6 (through demanding the new endo here to check it after the mayo surgeon told me that I would need them weekly.) Now it is on the low side of normal! The endo here didn't give any recommendation what so ever either. I have a call into the mayo surgeon as to where to go from here. Should I increase my calcium intake through foods, increase my calcium supplement intake, or add back a little calcitrol? I know that nobody is a doctor, but I am not sure what to do over the weekend while I am waiting to here back. Totally confused! Does it mean my parathyroids are not working? The surgeon had said that they were back and going after the two higher blood tests. I should also add that the blood test was first thing in the morning, I hadn't taken calcium since the night before. Any help appreciated!

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I am sorry, I have no idea! I hope someone has an answer for you!

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You are right, most of us are not doctors but some of us pts are way more knowledgeable then many of the doctors that we see, because we have had to learn about low calcium issues just to survive! Here is what I would suggest you do and what I would do if in your position....

Ask Mayo's people if they can recommend a better ENDO in your area! Or, get them to call your doctor (fax) and send their recommendations on how to treat. Most likely, you will have to educate yourself and maybe the ENDO you are seeing now on how to deal with your parathyroids until they stabilize.
It does appear you are getting back some parathyroid function due to the elevated calcium levels. BUT if you are also having low levels still they have not completely healed. Some of us never do get back any function and so in that regards you can have hope that you will not need to deal with this for the rest of your life.

I would immediately request a parathyroid hormone level. This will give you a better idea why you are not stable. If the level is low (which quite likely it is) you will not likely be able to maintain a stable level without calcitriol. If it is borderline you may do OK with calcium supplements and OTC Vit D, taken together with food. But that you will just have to experiment with and see if you are feeling low symptoms.

You are right to do all testing on a empty stomach first thing in the a.m. This will give most accurate results for when you are most likely the lowest and if you have parathyroid function, it will be highest first thing in the a.m.

Here are a couple of web sites that will be useful. They are targeted to those of us who have permanent damage known as hypo-parathyroidism, (HPTH), which diagnoses is only after 6-12 months of low to no parathyroid function. There will be some good general info for you there and may even help you to deal with the doctor that may be pretty unknowledgable about what you are dealing with.
www.hypoparathyroidism.com
www.hypopara.org

Please feel free to ask any other questions. Somebody else may have already experienced it too and have some good ideas for you! meanwhile, you are in our thoughts and hope you are not too uncomfortable.
Best wishes, Michele

p.s. If you start to feel really bad body sensations that leave you with terrible cramping, you need to get someone to drive you to the hospital ER - ASAP!

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I agree with Mazbarth's suggestions. Perhaps most importantly, how are you feeling?? Any tingling, twitching, muscle cramps, weakness, fatigue, numbness around lips/mouth, etc.? If not, in hypopara actually many times patients are running calcium levels of 8.0-8.5 as a "goal" b/c we also need to watch our urinary calcium to mak sure it doesn't go too high. So if u are feeling good, Ca of 8.6 might not be too bad.

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I went through the same thing (TT Aug. 22nd) and now only take 1 Calcitrol a day. Every now and then I start getting muscle aches/ twitiches and will take an extra Calcitrol at that time. It's important to remember to take them a few hours after your Synthroid. I take mine at dinner time. Good luck I hope you get regulated soon! I myself am going to have my parathyroid hormone level checked next drs. appt.

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LAZ67, I hope it goes better for you at your next check. You aren't quite far enough out to be considered permanent, so that is good news if it is in the normal range.

I want to caution you about popping extra calcitriol. I did it too the early days, but believe me...if you get too high, it is a very nasty feeling that is difficult to get rid of and so you want to do all you can to avoid it. It would be much better to "pop" an extra calcium tablet instead of calcitriol and then make sure you are communicating with your doctor about the need to take extras now and then.

Good idea about taking at dinner but if you are finding the aches, twitches etc are coming too early you may need to change the routine a little. Talk to the doctor about it, always! Best wishes on the PTH check!
Michele

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I agree with Mazbarth again. Another thing I might mention as a caution/caveat is that at least some of us (like me! ;)) actually NEVER become 100% symptom-free with the long-term/permanent hypopara. And in that case, it's not realistic to just keep "popping more calcium" (or calcitriol; again, I agree that it's safer to only take extra calcitriol if it is OK'd by your physician) to become 100% symptom free. That being said, you need to find a doctor who is open-minded and knowledgable enough to at least work with you on that. It took me awhile but finally found a doc who does "let" me take extra calcium doses for symptoms but ideally should only do that for a few days-week at a time on my own. I discovered that when I took higher doses of calcium continuously for several months, while my symptoms were better, they were not 100% gone, and yet my urinary calcium went too high (400 mg). So it's a balancing act for sure, to weigh the risks of feeling less than "normal" while keeping the risks of kidney damage etc. at bay.

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Yes, going high enough to eliminate all symptoms is very hard on the body. We all need to learn to live with new normals, as most of us will not be symptom free until we get the PTH via a pump system, which is in the future, quite likely! :-)

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Hi,

I had a TT in June, 2011 and at least 2 of my parathyroids were imbedded so they came out, also. I had to be on calcium immediately following surgery. A few weeks later they put me on Calcitriol (3 pills a day). After about 6 months I was bumped down to 1 pill a day. Shortly after that, I had to take myself to the ER on my way to work on day as my entire body was tingling (felt awful). When I arrived at the hospital my level was 6.3 after getting a 6 hour drip of calcium, the level was at 7.1. They got the OK from my doctor to let me go. Needless to say my dosage got changed again...back to 2 pills a day. I have had this dosage for quite a while and last month I went in for my annual check and was told my calcium is too low so now I take 3 pills every other day. I was told by my surgeon and endo that foods do not help as they do not give us enough calcium to make the difference our body needs. Very frustrating to know this is a life-long issue. Best of luck!! Keep being your best advocate.

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Jstudeman, are you part of our non-profit pt group at
www.hypopara.org ?

Good place for current tx ideas! Are you using calcium citrate? That is one of the more absorable ca+..
Best wishes! Michele

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I always test on the low end of normal for calcium and my dr. is fine with that as long as I have no symptoms. Too much calcium causes problems too. You should never increase calcitriol without a dr. knowing as too much D can be really bad. Yes it is a fine line to walk. Taking huge amounts of calcium at one time will not do much since our bodies can only use 600 mg at a time. We are probably better off taking lower amount spread throughout the day if symptoms are present. I usually get the tingling mouth, face and then hands if mine drops and I take an extra calcium dose. Many things can affect levels too, like exercise, stress, health problems. Learn as much as you can about dealing with hypoparathyoid issues because most of us have had to be our own advocates as many doctors don't have a clue.

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It took me a lot of patience because of my fear. Don't assume the worst. I took Calcitrol for a week after surgery. But then I stabilized.

Once a surgeon has discharged you it is the endo who can keep you informed (in addition to your own data collection---from reputable sources.

How are you doing now?

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Had a tt 9 years ago and lost a parathyroid gland.
I take 4x500 unit plain calcium carbonate through the day but 4 hours after taking synthroid.
I take 75 units of rocaltrol, a prescription vitamin D.
With the calcium I take a magnesium glycinate. This is the most bio-available form of magnesium.
Guaranteed, your endo never heard of this.
Besides balancing your calcium and vitamin D, you take it to "bowel tolerance".
If you take the needed calcium constipation can be major, and laxatives are not the answer.
It's a bit tedious but this routine avoids things like numbness and the general lousy feeling that comes with this friendly cancer.
On days that I remember to do this right, I almost feel what I remember as normal.
This thyca life becomes a series of routines, rigidly followed.
Doctors think we are self absorbed, which we are out of necessity.
Remember, without a thyroid we are steering a ship without an anchor.

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The more I read the forums, the more I realize that so many of the things which have bothered me (persistent cramps, numbness in my fingers, brain fog, crushing fatigue, and depression) are likely to be caused by hypoparathyroidism as a result of my 2006 total thyroidectomy. My calcium levels always run below normal. Yet, none of the endos I've seen have suggested that I have a parathyroid problem. My gp told me that everyone gets cramps as they get older so not to worry that I was wracked with painful cramps in my thigh Why, in 7 years of post-op treatment, hasn't any doctor mentioned hypoparathyroidism or tested for it? Most doctors until my current terrific endo simply exhorted me to take calcium supplements when my calcium labs would come in in the 6.8-7.5 range. Could my B-12 deficiency also be related? The fact that doctors continually over-simplify and are not informed on these issues which have real quality of life implications just makes me mad.

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So sorry to hear of your mistreatment! Have you had a parathyroid hormone level done lately! May give an answer as to why you are so low. Are you on calcitriol?
Hope you have a better treatment plan now!
Michele

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B12 deficiency can contribute to fatigue and numbness/tingling and brain fog, but probably not cramps.

As far as no doctor testing for hypopara, it is b/c most don't know the range of symptoms it may cause - this was only just presented to the wider Endo audience at the Endo meeting this past summer. Believe me, most of us have felt the same way as you, but getting mad is probably a good motivator to seek out an Endo expert in hypopara to try to help you feel better! Sounds like perhaps you have found one such Endo now? Best wishes!

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if you are on calcitrol can you also take Vitamin D3 to raise its level?
Is there someone who can enlighten how Vitamin D3
interact (if they do) with the use of Calcitrol?

Thank you!

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Essentially they are both forms of vitamin D. I would NOT take them on top of one another. D3 has to be converted through your kidneys to be used in your body. Calcitrol is a form of vitamin D that is already converted and usable to the body. At least this is how my surgeon explained it to me. These forms of vitamin assist with the absorbtion of calcium.

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I'm on three times the daily dose of calcium and still doctor says my calcium is low. Some of us will always battle with our calcium levels after TT. My TT was May 2012 and since then health has not been very good at. I would follow Michele's advice.

Hugs

Lulu

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I think silverem's advice is more for people who do NOT have hypoparathyroidism (HPTH). If you do have HPTH, it is ok to take both vitamin D3 OTC (which is the 25-OH vitamin D form), as well as the calcitriol (which is the 1,25-(OH)2 vitamin D activated form). In normal people, the 25-OH vitamin D is converted with the help of PTH in the kidneys to the activated 1,25-(OH)2 vitamin D form, which then helps with calcium absorption from the gut. However, the 25-OH vitamin D itself is important for various other cells and immune function in the body. It is low 25-OH vitamin D that has been found to be associated with various cancers, etc. In fact, I myself had very low 25-OH vitamin D at the time that my thyca was diagnosed.

Even though it's controversial how much the 25-OH vitamin D will help with calcium absorption in HPTH patients (since you need PTH to convert it to the activated form), my Endo did advise for me to take it to keep my 25-OH vitamin D level at least above 30. There is also thought that perhaps, even the little bit of remaining functional PTH will allow for some of that 25-OH vitamin D to be converted to the active form. I additionally do take calcitriol 25 mcg twice a day along with Caltrate+D 600 mg/400 IU twice a day.

HTH,
Kim

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I agree Kim, and you have a lot of good information to contribute. I would just be really concerned with somebody dosing d3 and calcitriol without labs to monitor. I know for me my calcium labs have gone to the high end of normal and then to the low end of normal just by adjusting the calcitriol and not even the calcium this last time. The surgeon that hospitalized me has been way more helpful in the adjusting the medications than the endo that would not even get back to me!

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