Should I continue with Carbimazole?

[KittyKat234]

Hi everyone,

Just wondering on everyones thoughts on my situation. Diagnosed with Graves in March and told to take Carbimazole 5mg twice a day. In May I was advised to reduce my dose to once a day.

By July, the Endo confirmed that my thyroid function tests had normalised, but to continue taking the Carbimazole once a day.

BUT, heres the thing. From May, I've actually been reducing my dose and currently only take a quarter of a tablet once a day. My thinking is that my bloods have normalised on a lesser dose, than Ive told the Endo about! Do you guys have any thoughts about that? I mean, I dont want to take these meds if my body is sorting itself out anyway. But Im concerned if there are other problems that I might encounter, by not following doctors orders?

Incidentally, I have noticed I'm putting on a bit of weight around my midriff, so wondering if Im going hypo now because of the meds?

[Marz]

Reading through your previous posts you have not had Graves correctly diagnosed ?? We see this often here on the forum. You have been very well advised by pennyannie so maybe time to follow her great advice 😊

[pennyannie]

Hey there again :

First off - do you now have the medical evidence of a positive Graves antibody blood test ?

I think last time you were waiting on hospital blood test results so hope within them there is

mention of a TRab - a Thyroid Receptor antibody reading and cut off number - which can also

be written as a TSH Thyroid Receptor antibody - or a TSI - a Thyroid Stimulating antibody ?

Please remember to reply making sure the other forum members name comes up - as otherwise they are not notified there is a message and you feel ignored - which is not how this forum works - we will answer - but need to be notified - so please use the reply button within the post you are writing to.

It's been 4 months since you last posted so I would imagine you have had a follow up appointment with the endo and your T3 and T4 are back in range with the AT drug having been reduced down again -

I can't advise without a current blood test detailing your TSH + Free T3 and Free T4 results and ranges -

Are you still taking the Propranolol as this also affects your blood test results as this beta blocker slows the conversion of T4 into T3.

If you feel ok on this lower AT dose I'm guessing that's ok -

but I'm not even sure what your diagnosis is as from memory you have not had Graves antibodies confirmed - but Hashimoto's was confirmed - though you have continued to be treated as though you have Graves Disease.

[KittyKat234 in reply to pennyannie]

Hi Pennyannie,

Thanks for reply. I managed to get the answer from the Endo. Apparently they tested for TSH Receptor antibodies in April and reading was 3.14. (no range was given)

I had a follow up in July and my free T3 has reduced from 4.7 in May, down to 3.6 in July. (Range 3.1 to 6.8)

My free T4 in May was 13 (range 12.0 to 22.0)

My free T4 in July was 14.3 (range 10.8 to 25.5)

In Apr 24 Thyroid Peroxidase Ab Concentration was 68 (range <50))

In May 24 Antithyroid Peroxidase Ab was 45.5 (range <34) (I think these 2 last readings are the same thing??)

I'm still taking the propranalol, but only really need that at bedtime, as the palpitations seem to kick in when I lay down.

The letter from the hospital says Graves, but I know we've had previous discussions about that diagnosis!

Hopefully I've found the correct info that you need now. Thankyou for your help!

[pennyannie in reply to KittyKat234]

Ok then - so we do have a Graves antibody reading at 3.14 without a range - but have seen cut off numbers at around 3 - so let's go with that - and we do also have a positive for Hashimoto's - so you are dealing with both these Auto Immune diseases :

Graves is the more serious of the two and treatment for Graves takes precedence.

So you were right to reduce the AT drug as otherwise your T3 and T4 would have fallen through the ranges with you having hypothyroid symptoms which are equally disabling.

I can see you likely reduced the AT drug after the May results as your T4 was at only 10% through its range but by July had risen to 24% through its range - so well done you - for taking the initiative -

Please advise TSH readings for May and July - any movement there - are you still under the range ?

I'm sorry you are having to wait so long between appointments - I think I was followed up with blood tests and AT drug adjustments every 6 weeks when going through all this back in 2004/5 - though had no idea what it all meant - but there -

You need to try and keep your T4 at around mid point in the range as much lower and you will be in hypothyroid land even though technically ' still in the range ' - and yes, excess around ones middle -it's probably water - don't worry - a common hypo symptom.

So how much of an AT dose are you now taking - when is your next blood test ?

Don't worry about the fact you have been self adjusting the AT drug - and be honest as to what you have been doing - as you were right to do so - and continue to listen to your body which has served you well :

If you are thinking of stopping the Propranolol I read this is more difficult to stop and has to be done very, very slowly - so dropping the AT drug is not causing you any harm - but stopping the Beta blocker may need a different ' thinking ' :

[KittyKat234 in reply to pennyannie]

Hi,

Thanks for the reply.

Curious to know which blood reading means I have Hashi's as well? The endo hasnt mentioned anything about that, but would like to be educated before my next appointment with her.

It was thru reading the posts on here, I decided to reduce my dose, as I learned that continuing the AT drugs would increase my risk of going hypo. On that note, why has the Endo advised to continue on 5mg Carbimazole if my bloods have normalised? It just doesnt make sense to me! Do you think I may still go hypo if I continue with the quarter of a tablet?

TSH 7thMay 24 - 0.02 (range 0.27 to 4.2)

TSH 29th May 24 - 1.45 (range 0.27 to 4.2)

TSH July 24 - 2.37 (range 0.27 to 4.2)

Looks like The TSH has been brought back into range too!

Will be having some more private bloods done soon, as I want to know what my TPO Ab are now, (NHS say wont test for that until next year???? Seems a bit weird not to!) Ill post the results when I have them.

Re the Propranalol, I wasnt thinking about stopping those, but being as you mentioned they reduce T3/T4 conversion, its something I'm going to think about. I may very well stop the Carbimazole altogether, as I'm scared that even with the minimal dose I'm taking, its still blocking my bodys own natural process. What do you think?

[pennyannie in reply to KittyKat234]

Hey there again -

You detail above in the April and May results - Thyroid Peroxidase Antibodies - TPO readings - as being over range - which are therefore a positive for Hashimoto's Auto Immune Disease - you might like to read around - thyroidpharmacist.com - though have a funny feeling I've sent you this before ??

With Hashimoto's the thyroid is again ' attacked ' but these attacks are transient and the T3 and T4 fall back down into range themselves - and so is not treated with any drugs -

but given enough time the thyroid becomes less productive of T3 and T4 thyroid hormones and disabled with you becoming hypothyroid and needing some form of thyroid hormone replacement.

Hypothyroid symptoms tend to start creeping in once the TSH is over 2 - and years ago people were diagnosed as hypothyroid and prescribed thyroid hormone replacement once the TSH tipped over 3.

So your TSH has bounced back into range - though a little high- which is a good sign that tends to make me think this blip with Graves Disease has passed -

a euthyroid - normal functioning TSH would be around 1.20/1.50 :

The higher the TSH - the lower the Free T3 and Free T4:

When is your next appointment ?

P.S, Yes - I've sent you this information and link for Hashimoto's before -

do you know how to find your previous posts and all your replies -

just press your Profile icon which on this page sits alongside the My Hub - Chat - Post- Alerts and Menu icons and this takes you back to everything you have written and all your replies on this patient to patient open forum.

P.S, Please get your ferritin, folate, B12 and vitamin D run and post the results back on the forum for advice as to where you likely need these core strengths nutrients to ' sit ' as if low in range these can compound your ill health further than necessary.

[KittyKat234 in reply to pennyannie]

Hi PennyAnne,

Thanks for all the info and sorry for delay . Very helpful.....

Ill take a look at the link you sent - there seems to be a lot of info on there to digest

I do hope you are right that this Graves disease has passed and was just a blip. (Fingers crossed)

My next appointment is in 3 months I think.

And thanks for the tutorial, I wasnt really sure on how to find my previous posts etc...

I have had those extra bloods done, and results were :-

29 5 24 Ferritin 168 (Range 13- 150) I know this is too high, and think it may have been because I was taking a thyroid support tablet which contained iron, so I have discontinued that now...

7 5 24 - B12 Reading was 313 (Range 180 - 999)

29 5 24 - B12 Reading was 253 (range 145 - 569)

29 5 24 Active B12 - 73 (Range 37.5 - 150)

7 5 24 Folate reading was 3 (Range 3.89 - 26.8) I was prescribed Folic acid , and it seems levels came back into range.

29 5 24 Folate Reading was <45 (range 8.83 - 60.8) I have discontinued these meds now, as I read that B12 and folate deficiencies, can often mimic eachother.

29 5 24 Vitamin D - 100 (Range 50 -200) I am still taking the vit D 2000iu tablets.

I'm also in the process of getting more private bloods, so there should be more results available soon.

[pennyannie in reply to KittyKat234]

Just for reference I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D arond 125.

Ranges seem to change - so if in any doubt aim to be at the very least 50% through any range - and likely bank on being up at around 70% through the ranges.

[KittyKat234 in reply to pennyannie]

Thats great, thankyou for the advice

[asiatic]

My experience has been that docs use higher doses of Carbimazole than is necessary. I agree with pennyannie that your instinct to lower your dose was correct. The endo may want you on it for longer as we know it gives you the best chance of a lasting remission. However, because you are now hypothyroid he would need to use a block and replace regime probably starting with 5mg. Carb. and adding in about 50mcg. Levo. You could just stop the Carbimazole with watchful waiting. Your TRAb was 3.14 so not very high therefore less chance of relapse. With having Hashimoto’s too you may need to take some levothyroxine. I judge how much from my fT3 level, adjusting to keep it half way through range where I feel well.

[KittyKat234 in reply to asiatic]

Hi, Thanks for your reply. I suppose I'm a little confused why they keep you on Carbimazole for 18 months, when they know that it'll turn someone hypo, which will then require the block and replace method? Or possibly a thyroidectomy etc. I currently only take a quarter of a carbimazole tablet, which seems to work, as the palpitations only now occur much later on in the night. My thinking is to get off the carbim, and reduce the propranalol very slowly, as I understand taking propanalol, can also affect your T3/T4 levels. I'm wondering if taking that small amount of Carbimazole is even worth it, and also how it might be affecting my bodies attempt to normalise itself. Which is my goal!

[asiatic in reply to KittyKat234]

They keep you on Carbimazole for 18 months to give your antibodies a chance to normalise but there is now evidence that the longer you stay on it the better chance of lasting remission. I was on Band R for 8years. According to Elaine Moore doses as low as 1.25mg have an effect. Not everyone will become hypo. A low dose of Carbimazole works for many. For those who do quickly become hypo, block and replace buys them some time. My TRAb levels were still high (at 16 ) after a couple of years so I thought I would quickly relapse if I stopped. My goal was to give myself the best chance of remission by staying on the lowest effective dose. Latterly I was on 2.5 mg. Carb and 75 mcg. Levo. I stopped Carb a few months ago but still need Levothyroxine. There is no one size fits all. Read all you can and make an informed decision on your individual circumstances.

[KittyKat234 in reply to asiatic]

Thats very helpful. Thanks for the info!