I'm a 20 year old male and in June I was diagnosed with hyperthyroidism. Went to see the practice nurse at my GP surgery for manengitis vac, asked her to check me over as I'd felt rubbish for a while, hr found to be 209, she called an ambulance and I was blue lighted to hospital, where I spent 3 days (9/6/17 - 11/6/17) and found to have thyrotoxicosis and discharged on my birthday. I was Initially put on 30mg of carbimazole a day and 120 of propranolol. Bloods then had shown that I had T4 levels of 84, which o understand is very dangerously high.
Last weekend, (8/7/17) was admitted to hospital again with same symptoms as last type, dizziness, palpitations and fluttering, tachycardia, hypotension ( BP 80/60) etc. Bloods that time showed my T4 levels were 86.
The medical reg was very rude to me and twice accused me of not taking my meds because bloods taken a week and a half after original admission showed T4 levels of 25. ( I taking my meds like clockwork because I'm fed up of feeling rubbish and it's really restricting my life).
I'm now on 2.5 of bisoprolol a day, along with 120 of propranolol and carbimazole had been upped to 40 a day.
My question is why would my T4 levels go all the way up again to 86 after dropping to 25 just a week after diagnosis and start on meds?
Why aren't the beta blockers bringing my heart rate down properly? It goes down to about 100 but then gradually goes back up to 170/180 by the time I'm due my next dose.
I'm being investigated to find the cause but they suspect Multiple Endocrine Neoplasia type 1.
I have a scan on the 15th before I see the endo specialist on the 26th but wanted to ask here first.
Would appreciate any advise as I'm really frustrated and nobody at the hospital has explained anything properly.
Thanks
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ThyroHype001
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I'm not sure I can help, but about a week after I started on 40mg Carb and 80mg propranolol, my heart rate fell to 46 and my blood pressure to 90/60 (from about 140/90). I stopped the propranolol immediately, but continued with the carb. Before I got around to seeing my GP and getting bloods, my heart rate and BP went back up to where they had been and so I continued with the propranolol. the drop only lasted a few days, and things have been a lot steadier since that.
Calcium levels were through the roof on my original admission in June but not sure about last weekend.
Yes, they said it's usually inherited but that it can be a new mutuain that can then be dormant for years or something, there's no family history though as far as I know. Just been told that they suspect more than likely it's MEN 1, not had things explained that well by the hospital at all.
Probably best doing your own research, but also push your specialist (whoever you are under) and/or GP to explain. From what Ive read it sounds a complicated thing.
Really sorry to hear this has been so horrible for you.
My speculation would be that you need more, potentially much more, carbimazole than that.
I also have 'very active' hyperthyroidism and my levels recently went up despite the fact that I was taking 600mg of PTU (equivalent roughly to 60mg of carbimazole I think). Like you my levels had previously been dropping - although very slowly and possibly with some unrecorded fluctuations between blood tests - and despite this positive trajectory my last blood test showed levels up not down. My endo said this is called breakthrough thyroxcois --where your thyroid production overrides the meds- and is because my hyperthyroidism is so severe so hard to control. They've now upped my dose to 700mg and say I could go up to 800mg (but no further).
It doesn't surprise me that your thyroid was not reliably controlled on 30mg of Carbimazole - the dose they STARTED me on was 40mg of Carbimazole (I was later switched to PTU because of very bad joint pains) and my levels weren't nearly as high as yours (although still pretty high - my T4 was 54).
I'd ask if you can take more carbimazole - it says everywhere that 40mg is the highest dose but my endo recently suggested I could go back to carbimazole from PTU (carbimazole apparently more effective) and take 60mg of that, so clearly they can prescribe it past 40 if they want to!
a caveat - I know nothing about Multiple Endocrine Neoplasia type 1 so maybe if you have that what I've said about upping the dose wouldn't help! worth asking though
Are you taking the carbimazole as a single dose? Or do you divide the dose into two or three each day?
Adults
The initial dose is in the range 20 mg to 60 mg, taken as two to three divided doses. The dose should be titrated against thyroid function until the patient is euthyroid in order to reduce the risk of over-treatment and resultant hypothyroidism.
Thanks for your replys everyone. Will ask my endo consultant. Just frustrating that I havent had my fury appinyment yet and it's almost a month since initial hospital admission and diagnosis, while in the meantime I've been left with many questions and not had anything exolsoekd well enough to me by the hospital/my gp.
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