Ii really do wonder if the carbimazol has messed up my thyroid. I was pretty much ok when I went into hospital November, nothing to do with thyroid. Then came out and told I was hyperthyroid. I was given a prescription for 20mg carbimazole once a day. After about 4 to 6 weeks told euthyroid and medication reduced to 10mg. That was beginning of March. Since then my symptoms have been up and down. Breathless tremors, racing heart' and today upset stomach and feeling slightly shivery.
I am trying hard to get my head around the thyroid, symptoms, what to eat and not eat.
I still wonder why I was ok and now feel so unwell.i do have parkinsons diagnosed 2010 but I was fine with that and coping. Now i'm wondering why all this.
If you know what the results of your blood tests are with their ranges and post them here someone might be able to suggest a possible cause.
I was hyper and started off on a big dose of Carbimazole which eventually made me under active which didn't feel good. I was then given thyroxine to take as well as the large dose of Carbimazole ( block and replace) but every time I needed an increase in thyroxine I actually felt a bit hyper and horrible again then once the levo was increased the palps etc calmed down again. The thyroid works in funny ways.
Sorry I can't offer any real help but post your blood test results with the lab ranges and see if someone else can.
My blood results January after 20mg Carbimazole since November were as follows
TSH 1.71 free T3 4.7. Free T4 14.3
Was told to reduce Carbimazole to 10mg.
March 4th told may have nodule and have to have scan.
Blood results
TSH 1.82 FT3 4.2 FT T4 14.1
My GP told I was clinically euthyroid and further follow up in two months. Have an appointment 6th May. But considering going to see GP after holiday feel so unwell.
Do you know what your lab ranges are - they are usually shown in brackets after your blood test results.
I found I always felt better when my TSH was below 1 and my T4 was at the high end of the lab range.
For example I felt good when I was at TSH 0.68 (0.35 - 5.5) and Free T4 16.90 (10 - 19.8) but I pretty felt awful (palpitations etc) when my TSH was 1.4 (0.35 - 5.5) and my FT4 was 15.4 (10 - 19.8)
A TSH of 1.4 is well within the lab ranges but it just wasn't the right place for me to feel well so perhaps something like that is your problem.
Hello
OH MY GOD. Run, run, run away from these people. What diagnosis apart from 'hyper' have they given you??? What were your antibody levels, in short what disease do they think they are treating???? Any rise in TSH on carbimazole is an indication of over treatment - this is what their own treatment guidelines say. In Graves, for which carbimazole is primarily used - a rise in TSH is RARE and is a signal to a decent endo that he's overshot on the treatment.
I sent someone else in exactly your boat to see my endo privately in London who wrote a scathing report to their nincompoop doctor and took them off CBZ immediately. It's a very dangerous drug, it's highly toxic to your liver, and most doctors don't know what they are doing with it. Your TFTs are WOEFUL, 10mg is way too much, and by May you'll be barely able to move.
I had rampant graves disease and I was on 2.5mg of CBZ every third day and even then my new endo (my third opinion) took me off it as the disease burden on that drug was so very high.
Please, please, please go and get some blood tests and go and get a second opinion. Meanwhile get copies of all the blood tests they used to diagnose you and post them here.
You need to get your head around all of this so that you can argue your corner, welcome to the bonkers world of thyroid treatment.
Rebecca
xxx
• in reply to
Here are my results with ranges. I have nothing from 2 day stay in hospital in November. I was admitted through a reaction to an antibiotic and became dehydrated. This is what I have asked several times. Wouldn't being dehydrated and on drip have some affect on all your levels.
My children said even my Parkinsons right arm tremor stopped while I was in hospital.
Hello Rebecca, am new to this & after experiencing "thyroid storm" am a bit overwhelmed & a little scared. Seeing my GP next Friday. Would very much like the name of your endo. sound likes they know they're stuff & would like to ask my GP for referral. I live in London & would be immensely grateful for your help. Hope you are well yourself.
Many thanks, Andrea
Gosh Rebecca, you have scared me. Will put latest results shortly.u
So what's best? Should I reduce Carbimazole to 5 or every other day.?
If you read my other posts you will see what has been happening and how ended up like this.
I have questioned right through why suddenly from being ok except for Parkinsons I have begun to go downhill since medication and thyroid diagnosis. Which came as a shock.
I shall go to my GP on Tuesday when surgery reopens. Not that I expect anything much from there.
Thank you for your help.
X
Hi
Sorry to have scared you. We need to see those blood tests from November, why did they put you on such a big dose of carbimazole? Your current results are borderline HYPO, you need your TSH between 0.3 - 0.5 and yours is nudging towards 2 - a decent endo knows a TSH around 2 and above = HYPO.
Your Free T3 and T4 are low middling. But there's nothing here screaming HYPER thyroid ... and did they test ALL of your thyroid hormones before, or just your TSH? Have they tested your antibodies? That would be your TPOab, TgAb and your TRAB (or TSI) - if you have the latter then that's a clincher for Graves, hence the CBZ. If you have hashimotos (so just the first two antibodies) then you will have transient phases of hyper but you don't need carbimazole really ....
In your shoes I'd be off to the GP asap for a set of blood results (hyperthyroidism, esp Graves cannot be monitored by the TSH, he needs to do a full thyroid panel) and you need to ask him about antibodies, he might have a letter from the hospital explaining what they tested. In order to know how to treat you, they need to know what the diagnosis is, and it sounds a bit woolly to me.
Then I'd be looking around for a second opinion. Whereabouts in the country are you? I have a good endo in London, private, has a clinic on Thurs afternoons. He's German, and quite definite about things but he's a brilliant diagnostician, he's a Prof of Endocrine surgery. You'd at least get a definitive diagnosis. But where you are now, I'd be gaining weight like mad, be constipated, have muscle weakness, ringing in my ears, numbs toes and fingers, total exhaustion and a constant feeling of seasickness ....blah, blah, blah, the list goes on and on and on..... horrendous.
Hyperthyroidism is serious but that's all the more reason to make sure you are being looked after properly .....
Don't panic but do get another opinion.
Rebecca
xxx
I'm still trying to get my head around why you think my TSH levels are high. Is it because they have gone up from TSH 1.71 to TSH 1.82? Reading Dr Peatfields book where he gives ranges of TSH 0.1 to 2.5 as normal. I can't quite work out why you think that.
I'm still learning. That is why I keep asking would dehydration affect blood readings?
Have reduced Carbimazole to 5mg suppose I will be told off. I was fed up of feeling worse every day. It's bad enough trying to cope with Parkinsons without having thyroid problems.
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Hyper and really fed up
Fed up with doctors. Need to rant.
Fed up, drained! Thyroid? 
No meds with hyper symptoms
Up and down. 
