Carbimazole dosage

[Ex111]

Diagnosed with Graves ( TSI positive) & active TED and have been taking 5mg carbimazole since middle Feb.

My Thriva bloods from last week are as follows:

Results

TSH 0.01 ( 0.3 to 4.2)

FT4 20 ( 10 to 20)

FT3 7.5

B12 high normal , Folate and iron low normal.

These show my FT4/ FT3 have dropped a little since starting meds. In March - TSH 0.01, FT4 26, FT3 10 and TSI 40.

My first face to face Endocrinologist appointment and NHS bloods are due end June.

My questions are :

Does it normally take a while for the dose of carbimazole to bring FT4/FT3 into normal range or is this achieved through higher doses?

Do you think doses are based on how symptomatic someone is ?

Thankyou.

[pennyannie]

Hello again ;

Your T3 and T4 were never really that high and believe why you were put on a relatively low dose of anti thyroid medication.

How are you feeling ?

Some endos offer a Block and Replace treatment option so that you keep your own thyroid hormones blocked but add back in some T4 - levothyroxine so the patient doesn't become hypothyroid.

If your Graves antibodies are still over range there is little point stopping the AT medication during this first phase of this disease :

[Ex111 in reply to pennyannie]

Thanks for your reply. I actually don’t feel unwell but not entirely sure I feel completely well . I have the eye disease and really hoping normalizing my levels will help this. Heart rate is back to normal. My first appointment with the endocrinologist was by telephone and he said I’m not on block and replace. Wish I’d asked more questions now but have the face to face end June . Thanks again .

[pennyannie in reply to Ex111]

Good morning ;

Yes. it does get difficult understanding where you are in this whole hyper/hypo phase of the disease :

Blood test are just one aspect of what can be a very confusing time as Graves works it's way through your body and if your Graves antibodies are high there is little point in doing anything except play for time.

Staying on the AT drugs has to be the best way forward and I read of people staying on this medication for very many years and further research is now showing the longer one stays on the AT medication the more chance there is of finding remission.

You might like to read further and I think the most well rounded website is that of Elaine Moore. There are sections on alternative and more holistic treatments options and positive suggestions on how we can understand better our triggers and how to learn to live with Graves and there is research in greater depth into the auto immune component of this disease which current mainstream medical have no answers.

Elaine has had several books published relating to Graves, AI disease and there is one book on Graves Ophthalmology and I'm glad to read you have been referred to a specialist in this area.

[Ex111 in reply to pennyannie]

Thanks for the info and reply. I’ve had a read through Elaines website. The books sounds interesting.

I have started accupuncture and this has had a big positive impact on my stress levels. It took me by surprise.

I think I’ve been focusing on my thyroid numbers too much. When I was hypo and on thyroxine I was obsessed with the numbers. I can see now I need to look at the bigger picture.

Does carbimazole have any action on the TSI antibodies?

[pennyannie in reply to Ex111]

No. all the AT drug does is block your T3 and T4 hormones rising any further and puts you in a holding pattern and the NHS suggest AT drugs for around 15-18 months :

There is no answer as to " how to stop the antibodies " other than for you to try to understand what or why triggered your immune system response and how can you adjust and manage your lifestyle in future and accept you will have a predisposition to this happening again if you are unable to find out the root cause of your illness.

[PurpleNails]

Your FT4 is high and although your FT3 does not have a range by my most we see this is over range. You likely need a rise of carbimazole to bring them down into range.

It’s usual to start on a higher dose eg 40mg which is reduced down every 6 weeks initially by half, then again until the right amount is found. Dose should be by FT4 & FT3 level not TSH which might stay low. (Mine hasn’t risen into range after 2 years on carbimazole).

Lately we have heard stories of people having lower doses prescribed but not being monitored frequently so either remaining too high like you or levels being driven too low. This is not ideal. Euthyroid levels have added importance in those managing TED.

Are you able to discuss with your doctor or endocrinologist and agree a rise in medication and schedule a retest after 6 - 8 weeks?

I would post your nutrient levels & ranges on main thyroid forum. Even if they appear in range they may not be optimal and there are some very knowledgeable members on that forum.

[Ex111 in reply to PurpleNails]

Thanks for your reply. Yes my FT3 is above range . My FT4 had moved down more than the FT3. My endo will have tested my bloods 3 months apart. Thriva has helped fill the gaps. I’m really hoping if /when my carbimazole dose gets increased that they will test more frequently as recommended. I will ask in my face to face appointment in June .

The positive things are my endo tested TSI ab and FT3 and he knows my TED specialist plus they’re in the same trust. Hopefully it will all become clear end June .

Thanks again. I’ve read as many relevant posts on this forum as I can find and learnt so much.

[pennyannie in reply to Ex111]

I have just seen your other post on the Thyroid uk forum and this looks very much like you have Hashimoto's AI thyroid disease :

Some people do have Graves and Hashimoto's running at the same time -

Do you have your Graves antibody blood test result and range please ?

Can I suggest you post all your results on everything on the main Thyroid uk forum where there are more knowledgeable forum members on all AI thyroid diseases :

[Ex111 in reply to pennyannie]

Yes my TSI ab in Feb was 40. Not sure of the lab range .

[pennyannie in reply to Ex111]

Well, there are TSI ( thyroid stimulating ) and a TR ab ( thyroid receptor blocking ) antibody unique to Graves - I think it would be a good idea to ask for a print out of these results for your own records - it is your legal right, and then when to hand, let us know which antibody and range are positive and over range.

[Ex111 in reply to pennyannie]

Just checked I have a letter to say my TSI antibodies are positive at 40 , range 0-3.

[pennyannie in reply to Ex111]

Thank you :

[NIKEGIRL]

Hi. I am like u. My T4 gets driven down faster than my T3. I have not got my T3 into range due to me flip flopping on and off the drugs. When my T4 was under range I felt suicidal and didn’t go to the dr. All I would say is get all the antibody testing and lost your results here. Good people here for u.

[Ex111 in reply to NIKEGIRL]

Thanks for your reply. It’s nice talking to people on here that understand how we feel. When my T4 was low in the past I used to lay face down on thy sofa all evening after work . I feel better now being hyper.

[NIKEGIRL]

I feel the same. 3 weeks ago my T4 was under range and I had terrible dark thoughts. I spent a week in bed totally depressed. I decided for that week I would come off the drugs and I felt better. It’s not a permanent solution though but my T3 is always high and T4 lower example T4 11 range 10-24 and T3 12.3 range 2.0-6.0. It’s crazy. I do feel like block and replace would help but I’m scared and full of fear to start on the drugs again and potentially go through the psychological roller coaster again. When my thyroid results were as above my dr did not suggest block and replace.