I am currently under investigation for calcium issues (Hypoparathyroidism) since having a TT last Jan due to Thyroid cancer, I take 100mcg of Tirosint (stopped meds 24hrs b4 bloods). Had tests for possible Addisons disease, find out tomoro.
Endo is trying to say hypocalcemia is transient yet 20 months later I am still not ok (PTH was not tested weirdly 😒, will ask why tomorrow)
I have had so many tests and they are skipping things its driving me crazy, brain is out of whack due to other health stuff but these results have me concerned, have new Endo referral tomorrow and want to be on the ball with his predicted advice.
Bear in mind TSH should be suppressed after Thyca
I supplement with magnesium, vitamins d, and B12, aswell as ferrous fumerate (prescription for low ferritin). also stopped all supplements a week before testing
At last draw levels have changed and I am a bit confused Endo already wanted to reduce dose (says I'm hyper but pretty sure I'm not)
My Tsh is creeping up which as I understood would only happen if I reduced my Levothyroxine dose?
I used the calculator and see that my latest T4 is 52.86% Through Range
and my T3 is 78.13% Through Range
I am really confused as I do not want to reduce my dose anymore as felt dreadful when t4 and t3 was lower, yet something seems to be going on?
As it is (in June) last Endo recommended a reduction of Levothyroxine to just 6 days a week 100mcg... however I have continued on my dose of 100mcg 7 days a week.
Hi yes i stagger all my supplements, as i am aware of issues with calcium, levo etc.
Its creeping up overall, this last year.
Parathyroids were according to surgeon not damaged!! Prior pth levels were just within range... and have been om alfacalcidol 1mcg and calcichews daily.
I will increase myself, no point asking as the last endo said he thinks i am hyper and that we don't need to suppress my tsh anymore... grrrrr
Pretty sure he wasnt paying attention and was just following a groove he is stuck in. I said about the thyca and he said that now the concern was my heart and bones !! My response was well then do a bone check and heart... he declined! Hmmmph
I had a TT 9 years ago ( not for cancer), and Ive been left with hypoparathyroidism.
Sometimes it can be temporary sometimes not but Id of thought enough time has gone by to see that yours isnt temporary.
Low calcium can cause a lot of symptoms and can cause some severe, it needs to be taken seriously and should be treated by a specialist in calcium disorders. It can be well managed with the right treatment but you need a good doctor to provide that.
I tried several endos who at best didnt know much at worst scary with lack of knowledge.
I was very unwell so I decided to go looking for the right doctor.
I got in touch with hypoparathyroid UK ( sorry cant seem to get link to work), they not only have a great deal of info and support they also have a list of calcium disorder specialists.
I told my GP who I wanted to see , and saw a great doctor who got me on the right medication straight away.
I have regular check ups and my symptoms are well under control apart from the odd mild symptom thats easily corrected with medication, the calcium crashes are thankfully a thing of the past. I can always call the clinic if I need to see someone in between appointments.
Hypothyroidism is giving me some big problems but at at least I barely have to even think or notice the low calcium any more.
A good doctor makes a whole world of difference.
I should add that my calcium doctor is not my thyroid, hes fantastic with the hypopara but rubbish with thyroid.
Yep thats what I'm hoping for with my latest referal, he is a calcium specialist. Did a bunch of tests this week, he thinks i present with AIRE mutation so is doing some further investigations, my pth was low prior to surgery, and had joint issues my whole life. Hoping to get to bottom of all this.
Im not sure if a genetic mutation has any baring on it, low calcium is low calcium as far as I can see. Its obvious you either have either too little or no parathyroid function .
If I hadnt found a good doctor I dread to think what state Id be in now, I was very ill, kept having calcium crashes with severe tetany. The last straw for me was one endo getting her medical books out and going looking for a colleague to help. I thought Im done with this its time I took matters in to my own hsnds.
With the calcium levels you have I would be having significant symptoms probably be very unwell. I have to keep mine over 2.2 but not over 3.0. The smallest of difference in calcium levels can make a huge difference to symptoms, at 2.19 Im a mess at just over 2.2 Im fine, its that close .,
I make sure I have plenty of calcium but not too much, ( thats not good either). I take alfacalcidol, vitd 3 and sandocal in varying doses dependent on symptoms. Calcium needs to be spaced out through out the day, and I must have some before I go to bed otherwise Im woken by symptoms. I have a pretty good routine going with meds and diet and it keeps me pretty much symptom free but if I do get some, usually mild sandocal gets rid of them within half an hour. Sandocal is not so easy to find now so I will have to change but I have enough to last until my next appointment. Calcium must be kept well away from thyroid meds, I leave at least a 4 hour gap between.
Now I just have to sort my thyroid which is being a real pain.
I couldnt believe I went into surgery for one endocrine problem and came out with two, but thankfully low calcium isnt one of them anymore. It shouldnt be for you either .
Yes i have had some pretty severe issues when my calcium has dropped, pretty much got my routine down now tho, the last 2 days were awful but they wanted to do 24hr urine tests and see how bad it gets with out calcichews.
Gene mutation is relevant as it could be the cause of the low calcium as it happened before surgery aswell yet they have fobbed me off this last year and failed to look further into depletion, saying function may come back. Well it hasnt so they are finally listening.
Sorry maybe the gene mutation is relevant but either way its causing low calcium that needs treating.
As far as hypopara goes Im ok, but I have to be spot on with routine and meds, I soon know if Ive let things slip. My warning sign I have is always pins and needles in my face first, some sandocal brings it back under control though. I never ignore those warning signs, it goes down hill rapidly if I do.
I also make sure I have some form of calcium with me at all times, home, upstairs and downstairs, car and hand bag. I also wear a medic alert bracelet which is recommended by hypopara uk. If you choose to do that have low calcium wrote on it, few people including doctors and paramedics know what hypoparathyroidism is. Its very rare there would ever be an occasion where it would be needed but its vital anyone treating you knows.
Hope you get some answers and proper treatment soon.
Thanks for the tips, i have thought avout a medical bracelet. Also have tabs everywhere, and take out with me.... i get awful tetany, usually hands, feet and face first, have had full on seizures during the night which scared the life out of me, i now have a good routine and have been able to manage it pretty well. It's a horrible thing isn't it, glad you have it under control. Xx
Yes that sounds just like me until I got it under control. My first full on tetany happened in hospital, absolutely terrifying. I was so poorly and coudnt get help, unable to move or speak but thank goodness a nurse saw me. By chance a junior doctor was near by and he was very quick on the ball, and he even sat with me while I had a calcium infusion and stayed until the tetany had passed, one of the few good doctors Ive met. No one told me anything about possible low calcium, no mention it could happen or even checked, absolutely nothing and had I been at home I dread to think what could of happened. Ive had tetany many times, its so frightening yet so avoidable with proper treatment.
Your calcium is very low to be having tetany like that, but it sounds like youre on the tight track now. If that happens again you really should go to A&E, those awful symptoms youve had can get an awful lot worse.
I was a bit hesitant at first about a medic alert bracelet, thought mmm do I really need it, yes I do and its actually really quite pretty looks pretty much just like a nice bracelet and its peace of mind too. My husband naturally understands it, my grown up kids probably not so much, but I just told them the only thing they need to remember is “ low calcium”.
Its sounds like youre on the right track now, just keep going and dont settle for anything less than the best. The difference between where you are now and on the proper treatment is like night and day.
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