Hi does anyone know how long it takes for carbi... - Thyroid UK

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Hi does anyone know how long it takes for carbimozole to start to raise tsh?

16 Replies

Thankyou in advance

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16 Replies
Joy333 profile image
Joy333

Hi,

Im not too sure how long it takes for tsh levels to rise. I was diagnosed hyperthyroid / graves in May and currently taking 35mg carbimazole, my tsh is still the same as it was back then. Hope your doing okay x

in reply to Joy333

Hi joy my t4 and t3 are just slightly over but tsh remains the same.Thought that eas strange but maybe not then, have only been on med for 6 weeks.No let up on symptoms yet msybe I expecting too much too soon just fed up of feeling rubbish! Hope you are ok?Thanks for reply

Joy333 profile image
Joy333 in reply to

I know it's hard isn't it, and such a huge learning curve. Did you get a betablocker to help with your symptoms? I find it really helps.

Yes I'm doing away fine, thanks for asking. Just trying to get my levels down. It is tough going feeling constantly rubbish but try to rest up, your body is going through a lot at the moment. X

Wiggy29 profile image
Wiggy29 in reply to Joy333

I've been on carb for 12 months now and TSH 0.05 :(

in reply to Wiggy29

Hi wiggy29 thanks for replying.What I dont get is this...I thought tsh responded to amount of t3 and t4 so now I have got those levels almost in range my tsh should respond to it and increase? Obviously that would be too simple! Good luck kim

Wiggy29 profile image
Wiggy29 in reply to

I don't get it either. My t4 & t3 have been in range since three weeks after so nearly a year and my TSH hasn't moved a bit. So I still feel exhausted and have symptoms. I have graves though so maybe that's why? X

in reply to Joy333

Hi joy333 yes I am on betablockers 20mg proproponole it helps with racing heart but seeating still horrendous and only getting around 3 hours sleep a night but I have restlesd legs too so that dosnt help with sleep.Take care

Fruitandnutcase profile image
Fruitandnutcase

When I was first diagnosed In November 2012 my blood tests on 30/11/12 showed TSH - < 0.03. (0.35 - 5.5 ) below low reference limit

Free T4 - 38.5. (10.0 - 19.8

A month later 28/12/12 having been on 20mcg carb daily they were TSH - < 0.03 (0.35 - 5.5 ) Below reference limit. Free T4. - 15.6. (10.0 - 19.8)

At that point I got a letter from my endo saying to raise my Carbimazole to 40mcg a day and by the time I had my next bloods done on 21/2/13 I had become under active and they were TSH - 7.0. (0.35 - 5.5) FreeT4 - 10.2. (10.0 - 19.8)

You can see how the results changed over time. I started on B&R on 28/2/13 and as my thyroxine was gradually increased my TSH came down and my FT4 increased and eventually when I was taking the 40mcg carb and 75/100 levo it settled at TSH 0.68 and FT4 16.9 and I felt very good. My B&R was stopped on 7/11/13 and so far I think I am in remission.

Sorry it is a bit long winded but it is probably easier for you to work it out looking at the actual results.

in reply to Fruitandnutcase

Thankyou fo reply yes I can see a bit clearer now my results are similar.I see endo for first time next thurs so maybe he will increase my carb.Will post what he suggests.Take care

tilly83 profile image
tilly83

I was diagnosed in Feb, went on 40mg carb with monthly blood tests, chose not to block and replace to alter in accordance with results. It has worked very well, TSH come up - gradually and T4 down from nearly 70 to 15, T3 fine... I am only on 5mg to 2.5 mg now. Do not eat any wheat at all, aiming to do Paleo diet now I have brilliant new book, cut dairy, caffeine and booze (apart from Happy Fridays and Saturdays....) I feel fine, am jogging - only 1.5 miles three times a week... not far but feels good and have about 9lbs to lose, that's is my only bugbear!!!!!!!!!!!! x

in reply to tilly83

Thanks for reply tilly83 its good to know that things can sometimes work out well! ZGlad you feeling so much better.Do you have Graves? I dont know yet if I have it or not I havnt been tested yet.

tilly83 profile image
tilly83 in reply to

I was told after a while they think I have Graves but it does not seem completely certain. My antibodies have now reduced to a point where blood results say they are not a significant marker of disease, I have another blood test on Friday and see an endocrinologist on 22nd....I am hoping I have had a flare up and it is now under control and taking a lot of steps to try and ensure I don't relapse (changing work situation, having monthly massage and acupuncture, supplements, very different gut-friendly diet...... ) If it doesn't work then I feel I will have done my level best without regrets.... well apart from trying to be kinder to myself for a lot of years but there you go.... it's something I'll tell my daughters to do...... I also had eye check to see if any changes could indicate Graves as if affects sight and nothing so far, touching a lot of wood. I see GP's with as much confidence as I can muster, research and try to do what I feel is good for me without being stupid! x

in reply to tilly83

Thanks yes perhaps its time I started taking more care of myself I will take your tips on board and mention graves next time I have an eye test.Quote of the week from my GP 'I dont understand tsh but I have heard of it'. Unbelievable!

tilly83 profile image
tilly83 in reply to

That is appalling. Please write it down as you may have to bring it up. I feel I know as much as my GP now.. always insist on having T4 and T3 done - if your TSH is vaguely 'normal' they won't do others as it's extra cost but I go back and ask for it separately saying it should have been taken.. it's done now and I can go to GP and say 'I think it's this or that'..... always try to be very nice to them though! x

Hi,

Thyroid hormones normalise a lot quicker than TSH, so don't worry about it, you haven't been on carbi all that long. I started treatment in Aug 2012 and my T4 was back in range by Oct 2012. My TSH didn't recover until May 2013.

I have been stable since then on 5mg carbi with a TSH just above 1 and a T4 of about 16. I have never had T3 tested.

My TSH recovery coincides completely with getting the correct treatment for my B12 and folate deficiencies, and then over time all the other deficiencies I have discovered and corrected (B12, folate, iron, vit D, magnesium, zinc, copper etc. etc).

I strongly believe that no matter what treatment path you take you need to back that up with investigations into the cause of your autoimmune attack. For a lot of us I think it goes back to the gut and springs from malabsorption of vitamins and minerals. In the modern world there are lots of reasons for malabsorption - drugs we take, undiagnosed coeliac disease, low stomach acid, gastric surgeries, poor diet etc. etc. - but despite this it is probably the biggest elephant in the room when you go to visit your GP; they don't understand it and they don't know how to treat it.

So my advice is get yourself tested and try and sort yourself out, with or without your GPs help (good ones will help, bad ones, well, the less said the better).

Start with the basics - FBC, B12, folate, ferritin, vitamin D, calcium, U&Es, LFTs, blood glucose, Coeliac screen, cortisol.

Always get copies of your results, never simply accept a "you're normal" from the GP.

Research, research, and then research some more. Elaine Moore's website is good, as well as pubmed for published research.

Graves disease is a condition affecting the whole body, not just the thyroid. Always remember that, because you can blast the thyroid as much as you like with drugs and surgery but you will still have Graves disease. To achieve remission, you need to address your own personal triggers, whatever they may be.

Good luck !

H x

in reply to

Thankyou hampster for your reply it was very informative. Never really thought about deficiencies but 20 years ago I was treated for pancreatic insufficiency so you might be onto something there.I have not yet been testef for Graves so dont know yet the reason for my hyperthyroidism. So glad of this site for help and information. Maybe my tsh will rise eventually then as you say not been on carb for long.Take care x

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