Normal thyroid function and carbimazole

[Kiitta]

Hi!

I’m in Norway.

I have been just been prescribed Carbimazole. Dose: 5 mg (2 tablets in the morning and 2 in the evening)

I have had 3 blood tests over the last year and I suspect my new doc (GP) only just looked at the latest to be honest but they have stayed mostly the same I have normal TSH, Free T3 and Free T4 except my TRAb has gone down a little bit over the last year from 35 to 28.

Here are my results:

P-T4, free (pmol/L) : 12.6 (9.0-19.0)

P-TSH (mIU/L) : 1.6 (0.35-3.60)

P-T3,Free (pmol/L) : 4 (2.6-5.7)

P-TPO-antistoff (10E3IU/L) : <3 (<6)

* P-TRAS (IS 90/672) (IU/L) : 28 (8 months ago they were 35)

I just changed doctors with whom I just had this latest test done with and she messaged me to say I need to go in carbimazole for hyperthyroidism. But my previous GP told me since my TSH free T3 and T4 are good I should just check regularly on my TRAb and that my thyroid function levels stay good and I shouldn’t have treatment unless they start going too high and low.

I’m nervous about going on carbimazole to bring down my antibodies since my TSH Free T3 and T4 are pretty might right in the middle, I don’t want these to get mucked up! Especially since my TRAb have gone down from 35 to 28 by themselves in 8 months with no meds.

I’m wondering how quickly did you all experience changes in your thyroid levels and also side effects from carbimazole like weight gain or headaches ? I’m also afraid of weight gain on this stuff! My weight is stable and I have no hyperthyroidism Graves’ disease symptoms at all.

I have asked my GP for a referral to an endocrinologist but she hasn’t complied so far.

What would you if you were me take the meds? Or work on improving my immune system naturally?

I think this situation was triggered last year when I went for a holiday in Paris with my mother and she had a stroke on the 2 day and she was 2 weeks in hospital and was diagnosed with heart failure only 20% heart function and I was dealing with French doctors hospital and insurance for 2 weeks straight to cover the hospital and extended stay in Paris and all the extra costs incurred.

During those 2 weeks my stress levels were through the roof it was even worse as all this happened abroad in a foreign country and worry about my mum. I definitely had weight loss in that 2 weeks despite eating lots and I pretty much had diarrhoea for those 2 weeks also. But that all stopped and everything went back to normal once mum got out of hospital and stabilised. During the year we changed her diet to vegan (I’m vegan and I have recently gone gluten free too and quit sugar) and she went vegan and gluten free and sugar free and now her heart function has gone and she’s improving every month and isn’t even on heart medication. Last month I just found out her heart function is now up to 40% and she’s getting better and better all the time. So my stress levels are definitely subsiding.

I know stress is a big trigger and can block reducing antibodies. With the recent good news my stress levels have definitely got a lot better.

Sorry this is so long. I look forward to getting your feedback and thoughts!

[tattybogle]

I can't see any justification for prescribing (or taking) Carbimazole in your situation. So if it was me i would not take it without seeking a further opinion, or clarification of the reason.

i honestly don't know if carbimazole has any direct effect on TRab levels or not , but they are going down anyway , and they are obviously not causing you to be hyperthyroid at the moment.

, but i do know taking it will reduce your T4 and T3 levels , which are what really affect how you feel, and they are not too high at all ~they are already relatively low.

[Kiitta in reply to tattybogle]

Hi Tattybogle! Thank you so much for your reply I really appreciate it - it confirms my feeling too!

[asiatic]

From your results you are not hyperthyroid. Your last GP had the correct approach. The present GP will make you hypothyroid and unwell by giving you Carbimazole which has only a weak immunomodulatory effect. TRAb blood test measures stimulating, neutral and blocking antibodies. With a measurable TSH and good levels for T4 and T3 you likely have neutral dominating at the moment. You need to keep an eye out for any changes but Carbimazole is not the correct treatment

[Kiitta in reply to asiatic]

Thank you so much for your reply I have the same feeling. I really appreciate your feedback it confirmed my feelings totally.

[pennyannie]

Hello Kiitta and welcome to the forum :

I was diagnosed Graves a few months after I had been verbally abused and physically threatened by a man I employed as my assistant manager - developed insomnia and after a couple on months of 1 hours sleep a night, gave in, went to the doctor and diagnosed Graves.

I knew nothing back in 2004 and just followed the advice of mainstream medical and the following year after around 15 months on the Carbimazole which suited me very well - had RAI thyroid ablation and became much more ill some years later - if interested - details on my profile page - just press the icon alongside my name.

I never had ' hyper ' type symptoms and understand now I have been hypothyroid from a child - having had doctors ignore my symptoms for years and presume my TSH never rose enough to ' qualify ' for a prescription of thyroid hormone replacement.

Whilst on the AT drug around a year in I did experience some hyper type symptoms of eating for England and loosing weight - first time in 50 years - but this was short lived as RAI was the next step I wish I'd never taken.

So, I would imagine your Graves a mix of blocking and stimulating antibodies that have pretty much cancelled each other out, leaving you feeling pretty much ' normal for you ' and as you say, your thyroid function is your ' normal ' and your T3 and T4 thyroid hormones in a good place with you having no symptoms of either hyper or hypothyroidism - so what ?

Yes, Graves is a poorly understood and badly treated Auto Immune disease with no known cure, and everyone's journey different - and can be triggered by a sudden shock to the system - so I think we both qualify there !! as we know stress and anxiety are the well documented triggers.

Glad to read your Mum is now much more comfortable and improved - and that you have been able to take back some control of this situation yourself and seeing the benefits - and guess the Eiffel Tower will wait for another year or two.

I'd be inclined to stay following your old doctors suggestions but whether this new doctor will be ' on board ' is the question.

Maybe an integrated, more holistic doctor may be a better match for you, if there is such a thing in Norway ?

As I understand things - all the AT drug does is ' buy the patient some time ' while we wait for the immune system to calm back down again and it does this by semi-blocking own new daily thyroid hormone production and as the over range T3 and T4 fall back down into range with hopefully symptoms alleviated, the AT drug is adjusted down so that the T3 and T4 do not fall too far through the ranges with the patient then dealing with the equally disabling symptoms of hypothyroidism.

I am not aware the AT drug reduces antibodies - I believe its function is to reduce T3 and T4 levels as if these keep rising higher and higher as can happen in some patients this puts undue pressure on the heart with rare instances of patients dealing with a thyroid storm, and why Graves is considered life threatening if not medicated.

I only started my research in around 2015 and found the most well rounded of all I read that of Elaine Moore - books, website and forum - where you'll also find a section of holistic and alternative treatment options and life style choices and suggestions.

elaine-moore.com

You might like to look up - if you haven't already - Eric M Osansky - Natural Treatment Solutions for Hyperthyroidism and Graves Disease.

P.S. This is the most recent research we have :

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

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

[Kiitta in reply to pennyannie]

Dear Pennyannie,

Thank you so much for this insightful reply. I’m so sorry to hear about the event that triggered your Graves’ disease and the whole journey you have been through trying to deal with it. I have a good idea about hypothyroidism and Hashimoto’s having helped my mother manage with it - but Graves’ disease is definitely a rather nee field for me so I really appreciate your info. I am definitely more interested to look into a more natural holistic approach to help reduce the antibodies and I’m not in favour of taking this medication TBH. I also found some good info from Dr Child’s on YouTube who is a certified functional mediator and also Dr Clark a functional Medicine neurologist who deals with thyroid issues a lot and they have good diet and supplements recommendations to help bring down antibodies. Since mine are not giving me symptoms and they have been going down by themselves I’m more inclined to give them a push naturally. I wil definitely check out the resources you mentioned. Thanks so much for being so attentive!

[PurpleNails Administrator]

Carbimazole works by blocking how your thyroid uses iodine to produce new hormone.

You’ve said your FT4 & FT3 are in range so lowering them may make you feel hypothyroid. On a 20mg total daily dose, that could be within weeks & definitely within months. Your TSH is also within normal limits & doctors usually focus on TSH. This is usually low when “hyper” so I don’t see why your doctor has started this treatment. ?because of your TRab levels?

Carbimazole doesn’t lower Trab levels, there’s some research suggesting it has a stabilising affect on autoimmune levels but Doctors don’t know why the immune system starts attacking / stimulating your own healthy tissues & this aspect isn’t what doctors treat.

Stress is common trigger for Graves autoimmune. Some choose holistic treatments to help the immune system but they will naturally change & fluctuate no matter what you do.

Has folate, ferritin, B12 & folate been tested? These can be affected with thyroid.

[Kiitta in reply to PurpleNails]

Hi PurpleNails!

Yes I forgot to mention my B12 folate ferritin Vitamin D3 and all minerals and vitamins and cholesterol everything has been checked and I have perfect range in all of them. I’m not deficient in anything or too high in anything bad either. So I don’t have the usual vitamin deficiencies most people with Graves’ disease have. I am likely to go with the advice of my previous doc and I will try take a natural approach to lowering my antibodies and not take carbimazole and rather take a natural approach to reducing my TRAb antibodies also the stress triggers I had before are now pretty well ironed out just recently. So I think it should be more achievable now.

I think my GP and I will be locking heads but I plan to bypass her cause I don’t think GPS should be dealing with this stuff too much quite frankly and I will keep getting blood tests done and rather I will confer with a functional medicine endocrinologist if there are any strange unwanted changes.

Also it seems so far as I’m going through the comments all of you who have been on this journey and have more experience than me also echo my suspicions that I should not be on this medicine and it will probably just throw me into hypothyroidism and it seems very unnecessary. I value your opinions and info so much I thank you for this it has helped me immensely!

[Kiitta in reply to PurpleNails]

Hi I forgot to mention I came across a group of doctors called certified functional medicine doctors and they seem to be ones to look for and go to see since they have what seems to me a much more sensible approach. With patients with autoimmune and thyroid problems for example they will look and investigate and talk to them to find out what is the source the root cause of the auto immune issue and deal with that rather than make the person pop pills which only put a temporary bandaid over the symptoms. It seems there are all types of specialists who are certified functional medicine doctors. I came across some on YouTube and it just made so much more sense. They might prescribe medication when needed but not in the way normal doctors do. It was from one of these doctors I found the info to help my mother. Dr (name edited) the cardiologist and Dr (name edited ) for autoimmune and neurologogy. Most seem to be in the USA. I will see if they are in Europe too and hopefully some in Norway!

* Dr names removed by admin *

[Gravie]

I would not take the carbimazole if I were you. After only 6 weeks of taking the same dosage you have been prescribed my T3 and T4 are now in range and they were MUCH higher than yours ( out of range) before starting. Meanwhile my liver enzymes which were also high due to the Graves I believe (as the increase coincided with Graves diagnosis)are now even higher! So there is a risk, if you react like I did, that you will go hypo very quick from this dosage and possibly adversely impact your liver as well.

[Kiitta in reply to Gravie]

Oh my gosh thank you so much! Yes you confirmed my gut feeling totally! I will try a natural approach to reduce my antibodies and my stress issues seem to be ironed out now too just recently so I think that should help! So sorry to hear about the liver damage! The good news is the liver can really repair itself well! Perhaps check out foods and diet which helps to support the liver! Thank you so much for your reply!

[pennyannie]

Hey there again :

What symptoms did you have when you first went to the doctor -

and do you have your TSH + Free T3 and Free T4 readings when first diagnosed with Graves Disease ?

[Kiitta in reply to pennyannie]

Hi again!

So actually I had absolutely no symptoms when I went to the doctor the very first time. The only reason I did it is because I heard many women around the age of 40 and I turn 40 in Nov this year tend to have thyroid issues. I just wanted to get a full blood test of everything including thyroid as I’m vegan just to make sure I’m on track with everything. I did this about 2 to 3 months after mum and I got home from her incident in Paris. As it was all my vitamins minerals and cholesterol protons folate b12 ferritin D3 you name everything was spot on perfect in the range it should be.

Also my thyroid results were this:

P-T4, fritt (pmol/L) : 11 (9.0-19.0)

P-TSH (mIU/L) : 1.5 (0.35-3.60)

P-T3,fritt (pmol/L) : 4.2 (2.6-5.7)

P-TPO-antistoff (10E3IU/L) : <3 (<6)

* P-TRAb (IS 90/672) (IU/L) : 35.1 (<3,1)

And my TSH T3 and T4 have stayed very very much the same in the middle of the range since 1 year ago I had another test in between and they were unchanged. Just my TRAb has gone down to 32 (6 months ago and now 28. Only now that my new doc saw my TRAb level at 28 with totally middle of the perfect range for TSH T3 and T4 she sent me a message saying my levels are too high and I have hyperthyroidism and I need to take carbimazole!

she didn’t even tell me which levels were high or anything I had to go to the clinic to ask for a print out of my blood tests so I could see what’s going on and I found that my thyroid function TSH T3 and T4 were perfect and my antivirus have in fact gone down since last year! I don’t think she even bothered to check my previous levels of my antibodies from 6 months ago and last year!

The only time I had symptoms were for the 2 weeks in Paris (weight loss while eating a lot and diarrhoea for 2 weeks) while mum was in hospital and then they disappeared once we got home. So I think if I had had blood tests then things would have looked quite different but I think maybe they started to correct quite quickly and I think if anything this all got picked up when I’m in remission. I quit sugar 3 months ago and gluten and I’m vegan and I don’t drink alcohol cause I just don’t like alcohol. I hope this helps! 😘

[pennyannie in reply to Kiitta]

Thank you - I find all this interesting - as within our National Health Service we would never get to have our antibodies run unless first our TSH - then Free T4 and then Free T3 were outside the ranges :

We have this Laboratory ' cascade testing ' system in place -

Whereby the 1st blood bio-marker is the TSH - and if in the range rarely is any further blood analysis run and the patient is considered ' ok and good to go ' -

and why many forum members are forced to run their own private blood tests to find out that ' its not all in their heads ' and that they do have a thyroid problem and then try and convince their doctor to start investigating and insisting on ' full thyroid blood tests ' .

Yes your TSH is pretty much spot on as I read euthyroid - normal thyroid function - to be around 1.20/1.50 -

However looking at this second set of blood test results that you were diagnosed on -

your T3 and T4 do look back to front - as generally speaking the T3 should track just behind the T4 - in % terms - and I'm getting your T3 at around 52% whilst your T4 is at around 20% through the ranges ?

The results you opened this post with yesterday have different readings and presume these are where you are now - as they show your T3 at around 45% with your T4 at 36% -

please check in case I've made a mistake - as I'm past my best before time of day !!

so there is a marked improvement and your T3 and T4 still reversed but looking like your thyroid is working on resetting itself - slowly but surely.

Funnily enough - now you mention it - I too had a case of diarrhoea before being diagnosed and just thought I'd eaten something odd - it righted itself after a few days - but much more violent than I thought usual ??

[Kiitta in reply to pennyannie]

Hi Pennieannie!

Actually from my 3 blood tests my latest one they didn’t test my T3 🤔

Oh that’s interesting I didn’t know T3 should track behind T4!

My ranges go as follows :

1 year ago: Free T4 12.6, (ref range 9-19) Free T3 4.2 (ref range 2.6. - 5.7) TSH 1.6 (ref range 0.35-3.6) TRAb 35

6 months ago: Free T4 13.1 TSH 1.4 no T3 given TRAb 32

Latest free T4 11.5 TSH 1.29 TRAb 28

Interesting the system the NHS has with thyroid blood testing and I can imagine it’s annoying when patients are told they are fine when they are not and often the antibodies can point to this.

I would say my diarrhoea I had for the 2 weeks while in Paris was not always a fully runny thing (sorry for all the details! 🫣) it was more like very frequent bowel movements and very loose kind of poop not normal stools.

How are you going with your Graves’ disease where are you at?

[pennyannie in reply to Kiitta]

I knew nothing back in 2004/5 and just followed the mainstream medical advice and had RAI thyroid ablation the following year - I realise now I had been hypothyroid all my life, but never acknowledged and with my dyslexic too - so challenged for so many years.

I became much more unwell some years later - just press my icon alongside my name and you can read my profile page - as you can any forum members thyroid journey if interested -

if you get lost reading around other posts and other forum members journeys and how we all ended up here -

simply press your Profile icon which sits on this page facing me on my laptop - top right alongside the My Hub - Chat - Post - Alerts and Menu icons.

Anyway - after being refused both T3 and Natural Desiccated Thyroid through our National Health Service - which I'd paid into for over 40 years - I decided to self medicate NDT and now look after myself , buy my own thyroid hormone replacement, run my own private blood tests, with my dyslexia back in its box most days ( cause - too low a T3 ) - and much improved as to how the NHS would have me.

Yes - so as detailed previously a euthyroid - normal thyroid function would see a TSH of 1.20/1.50 - with the T4 at around mid point in its range say 50% with the T3 tracking just behind ar around 45% through its range.

So looking at these other readings if with the same ranges -

6 months ago - your T4 was around 41% and currently just around 21% - ? - had you started taking the AT drug ?

[Kiitta in reply to pennyannie]

Hi Pennyannie!

Oh gosh that’s interesting! I have friends who are dyslexic I know some of the struggles especially through the younger years while at school but they all seem to have come out so well now!

I’m glad you are managing well and cancer you for getting yourself on track! Same thing with my mum’s case I had her change her diet according to functional medics docs and a vegan cardiologist recommendations who is the only doc who has shown multiple studies on reversing heart disease. The docs had her on medication and a pace maker and it left her so sick even worse than she was when in hospital she couldn’t take 3 steps without fainting! They had to get rid of most of the medication she’s only on a blood thinner and one other tablet they had her pumped up before with 7 heart meds! Now after 3 months on her new diet and hardly any meds her vertigo has almost gone (which is from meniers disease also an auto immune disease) and her heart function went up 20%. So she’s now walking 3 km a day on steep hills around the neighbourhood and improving soo much!

I know the NHS actually as I lived in London for 15 years. 😄

No I haven’t taken the carbimazole medication at all! It has only just been prescribed to me now just this week but I’m hesitant about taking it as my TSH T3 and T4 are in normal range I have just been getting regular blood tests to keep an eye on how I am I have never had any thyroid medication until now just this week on my latest results my new doc told me to go on carbimazole. I bought it from the pharmacy but I’m really unsure if I should take it also cause I have read research is unclear if it actually works for reducing TRAb antibodies as it seems to affect more the TSH T3 and T4 and that’s what most people on here are saying too. I don’t want to throw my TSH T3 and T4 out of skelter. I’m thinking to look down a more natural route for dealing with my antibodies.