Overactive thyroid medication

[Weelon]

Hi just need some reassurance if I’m ok to continue what I’m doing. I’ve been diagnosed with an overactive thyroid since March 2013. I’ve had several other medication initially & I’m currently on 2.5mg of carbimazole every 2days. Shall I continue? I’m just slightly concerned when I catch a virus that it takes me a long time to recover. The last specialist that I had seen kept on pushing me to have the radio active iodine & also states that the carbimazole attacks the white blood cells. What do you suggest?

[pennyannie]

Hello Weelon :

If your only concern is that of maybe getting a virus I would stay put on the anti thyroid medication.

I read that any AT drug should be dosed twice on a daily basis but how you can negotiate this on this tiny dose - I 'm not quite sure.

So have you been diagnosed with Graves Disease and do you have your original TSH, T3 and T4 levels at diagnosis and have the medical evidence of over range and positive TSI or TR ab antibodies that are exclusive to Graves Disease ?

The risk of being on longer term AT medication are minimal and if there is a " risk " to your white blood cell count, this can be monitored, and there is also the alternative " older " AT drug Propylthiouracil - PTU for ease of pronunciation.

If you don't know of the Elaine Moore Graves Disease Foundation it might be worth while for you to dip in and reading further around this poorly understood and badly treated.

Graves does seem to be a stress and anxiety driven auto immune disease so there are several sections covering more holistic, alternative treatment options and ways in which you can learn to balance your life / work balance and understand your triggers.

Currently research is suggesting that the longer that one stays on the AT medication the more chance there is of finding remission.

pubmed.ncbi.nlm.nih.gov/338...

Logically, this has to be the best way forward as stress is in one's life whether you have a thyroid or not, and loosing one's thyroid to an AI disease, that you will still have, may simply compound your problems, and in my experience swopping well managed hyperthyroidism for hypothyroidism a much worse health option.

I'm with Graves post RAI thyroid ablation in 2005 and became very unwell some 8 years later: I found the NHS system exacerbated my symptoms and once refused for an alternative to T4 monotherapy I jumped ship in around 2018.

I am managing lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism and I now self medicate with full spectrum thyroid hormone replacement which I buy for myself and I arrange my own blood tests and am much improved.

ncbi.nlm.nih.gov/pubmed/306...

Please do your research :

If you have any current blood tests you want explained forum members will be happy to help, and do you know where your ferritin, folate, B12 and vitamin D are sitting in the ranges as these must be at optimal levels to carry your through this phase of the disease.

[PurpleNails Administrator]

2.5mg every other day Is a wonderfully low dose. If you feel well, please don’t be forced into irreversible treatment by your doctor. I take 7.5mg per day and haven’t agreed to RAI either.

Carbimazole can cause a rare side effect on liver & on white blood cells called neutrophils or granulocytes causing agranulocytosis. It is a rare reaction in very few & not caused by an accumulation of taking the medication over time. So risk is the same today as in the weeks you began medication. Saying Carbimazole attacks white cells is extremely misleading.

I found this article saying the incidence of carbimazole induced agranulocytosis is placed at 0.3–0.6%.so it is low. Those on 30mg per day seem to present higher risk.

ncbi.nlm.nih.gov/pmc/articl...

Doctors say they are unhappy about patients continuing for many years on anti thyroid because of these risks.

I have come to the conclusion that the time limit (of aiming for up to 18 months) is arbitrary as doesn’t seem to be based on any scientific basis.

The cost of continued monitoring is expensive and medics view hypothyroid treatment easier to manage. (Often is isn’t) Once no longer hyper you are discharged back to primary care the policy is set partly with a finance and & efficiency as a factor.

Recovering from illnesses may not be due to carbimazole but other factors.

What are your current blood test results?

TSH

FT4

FT3

TPO ab (autoimmune antibodies)

TG ab

TSI ab (hyper Graves’ antibodies)

TRab

Folate

Ferritin

B12

Vitamin D

Have you had full blood count showing issue with white cells?

Have doctors determined the cause of your Hyper?

[Weelon]

Hi Pennyannie & Purplenails. Yes I’ve been diagnosed with graves & im taking vitamin b12, d3 but I do not know what range it’s sitting. I only have the results for the TSH which is 2.16 U/mL. Should I ask for a full blood count? It was triggered when I had a really bad chesty cough/cold & I was in a really stressful job. I’d noticed I wasn’t right when I couldn’t run on the treadmill for 5mins, had trouble sleeping & also the itching. Thanks very much for the information, I will take a look at the links.

[PurpleNails Administrator in reply to Weelon]

Simply testing TSH is totally inadequate.

A normal TSH is around 1. Carbimazole has kept me euthyroid (within range) for 3 years, but my TSH has stay discordantly low as I was mildly hyper for many years with a nodule. If your TSH was showing lower than it should your actual thyroid level could be low. You need FT4 & FT3 tested. It is best to test nutrients to know what level to supplement. Otherwise you may still have deficiencies or by unnecessarily supplementing.

The NHS doctors like to emphasise the concern with carbimazole causing a issue with white cells, but they do not offer any regular testing to monitor for the rare possibility…. Instead you are expected to be vigilant for signs eg unusual bruising, mouth ulcers, painful throat and report for Full blood count.

Here’s a warning card about it

btf-thyroid.org/Handlers/Do...

Look at arranging your own private blood test for FT4 & FT3 & nutrients. Thyroid UK have a page listing companies with discount codes you can use.

thyroiduk.org/help-and-supp...

The test can be taken by finger prick sample at home, send in by post and results viewed online.

I used medichecks advanced thyroid function test recently. It would include everything you need except the Graves Antibodies.

Often antibodies are not repeated beyond diagnosis.

Was your Graves’ initially confirmed with positive TSI or Trab? Doctors don’t always test & diagnose Graves by low TSH. See if you can obtain your historical hospital record as often specialist test for this not GPs.

Hospital webpages usual lists a health records department / library. Often a person contact or department email & address is listed. If not I would try the switchboard and ask it there’s a records department.

Then they usually have there own application form where you can request single, or entire record. Usually ID and a witness signature is required. I have done this via email.

[Weelon in reply to PurpleNails]

I will take a look at the private blood test for FT3 & FT4 so I have more of an understanding. I’m not sure if my graves TSI or Trab? Yes I don’t fully trust the NHS doctors even though we should but I also need to safe guard myself. Thanks again.

[PurpleNails Administrator in reply to Weelon]

A positive result for either Trab or TSI antibodies is sufficient to diagnose Graves. TSH receptor antibodies (TRAb) Combines the measurement for - Thyrotropin binding inhibiting immunoglobulins (TBII) (blocking) & Thyroid Stimulating Immunoglobulin (TSI) (stimulating or activating) & the “neural” which don’t have a name other than neutral or sometimes abbreviated to N-abs for short. TSI singles out the purely stimulating so some hospital test just this to confirm Graves.

TPO & TGab can often be present too and these are associated with Autoimmune Thyroiditis ( know as Hashimoto’s) which can begin with hyper levels but levels drop to under active.

Antibodies are cleaning up substances which should be there, the are reacting to the issues not causing it. Doctors don’t know how to control or treat antibodies the approach taken is the manage the levels & they often ignore the testing of it as they lack knowledge.

Even if correctly confirmed its rarely repeated although it’s well documented the lower the level the better the possibility of remaining in remission.

[pennyannie in reply to Weelon]

Yes, to the full blood count and everything else that has already been answered as i just found your reply by chance :

[Cat4health]

Hi Weelon,

I agree with everything Purple and Penny say above. Also if your TSH is 2.16 that's an indication that your graves flare could be over. Graves antibodies cause tsh to be suppressed even when ft4 is normal so if your tsh is up and 2.16 is really good then have you explored reducing your carbimazole even further and seeing whether or not you even need it?

[Weelon in reply to Cat4health]

Hi Cat4health. Yes I have come off carbimazole at one point & I even checked with the specialist & confirmed it was fine. So I did & then I relapsed. I then decided to continue taking carbimazole on a lower dose. Thanks for your input.

[Cavapoochonowner]

hello there, I too have graves and have been on carbimazole since 2018.I have always followed the protocol on the instruction leaflet to request a blood test if I have a sore throat etc.I have done this a handful of times and there has been no problem.My white blood count has been low at times but has rectified itself.I am on 40mg carbimazole per day as part of block and replace regime.Hope this helps.

[Weelon in reply to Cavapoochonowner]

Hi does your doctor or specialist confirms the level of your your white blood count? Yes it’s good to know that other people are carrying out the same practice, thanks.

[Cavapoochonowner in reply to Weelon]

yes, I have a blood test at hospital to check white blood count regularly.Also on the occasions I've had a sore throat and mouth ulcers I've had one done at my GP's.