Too much Carbimazole..

[Cinka]

Hi. I was diagnosed with Graves 2 years ago. My Consultant agreed to me stopping the 5mg of Carbimazole to see if my Thyroid would normalise but my levels skyrocketed and he advised starting 20 mg and getting tested in 2 months time. However, I developed painful throat and felt unwell so did blood tests early and found that Thyroid levels had plummeted. I was told to stop Carbimazole for 3 days initially but after my querying restarting so soon he agreed to me recommencing in 10 days then starting 5mg daily. I am feeling quite unwell and feel as if I have had no sleep whatsoever! Can anyone advise? How long should I expect to be feeling this awful.. Thanks, in anticipation! 😊

[PurpleNails Administrator]

By what level have levels skyrocketed? 

Can you add your FT4 & FT3 results (with lab range). What were they when stopping and after stopping. 

It’s better to reduce to 2.5mg & then every other day as this will show if levels are likely to rise with less anti thyroid.

Stopping & starting is always a less preferred approach because levels rise & recommencing carbimazole heighten the risk of new symptoms developing to the medication.  

With a sore throat as symptoms was a full blood count taken to check white cells? 

[Cinka in reply to PurpleNails]

Neutrophils slightly raised but that's usual for me, being on Prednisolone. I haven't really familiarised myself with what is normal with the thyroid hormones and do not receive my blood reports as a matter of course. I'll take on board what you have said and check my values. The member of the team I spoke to told me it's not an exact science .. I get that but it doesn't inspire my confidence when I feel unwell .. 😒Thanks for your reply 👍

[PurpleNails Administrator in reply to Cinka]

Doctors never explain results or volunteer to share result with you. This saves them time as they don’t spend extra time explaining them & why the treatment they suggest should be next step. This might lead to you asking further questions & even debating the treatment - seeing as it’s not an “exact science” you may come to know more about what you need to to be well than the doctor.   Especially if Doctor is looking as TSH for example & not FT4 & FT3.   

Doctors tend to look at last bit of information and  apply the most likely action that would help most people. Once we take some control of our own we often learn & pick up on details doctors don’t account for.  

They prefer you don’t question - just comply.    Most of us do - until trusting doctor leaves us unwell.  

You can legally view all your results.  Recommend you obtain them.  

I have access online to results (GP results) very useful of available. Alternatively ask reception (hospital of practice) for a printed copy.  [Which will have lab ranges].  NOT verbal or handwritten or even typed / emailed (they won’t include ranges & too high chance of error) 

I had high Neutrophils (high everything) counts for a long time after being diagnosed.  It was never explained they just kept repeating test.  I “forgot” to have them redone in end. 

 I asked what was the purpose of repeating the test if there’s no interpretation & no action planned if they are & he said he wasn’t sure but the best thing to do was to repeat them & hope they normalise! 

[Cinka in reply to PurpleNails]

I agree with everything you've said! I do ask for my results but I'm not familiar enough with normal values and my own results - mainly due to the way I'm feeling, taking steroids as well and resulting brain fog, etc. - and as you say they don't rush to explain it all. Must try to get to grips with it .. Thanks for your reply. 🙂

[pennyannie]

Hello Cinka :

There is little point coming off the AT medication if you antibodies are still positive, over range and raging.

The issue is one of your immune system having been triggered and turned to attack your body rather than defend it.

Calming down your immune system response is worth reading around and I found the Elaine Moore Graves Disease Foundation had some very useful tips in the sections on alternative and more holistic treatment options.

elaine-moore.com

When metabolism isn't running quite right - either too fast as in hyperthyroidism or too slow as in hypothyroidism it can be quite draining for the patient.

Please ensure you maintain your core strength vitamins and minerals at optimal, especially those of ferritin, folate, B2 and vitamin D as these can tend to nose dive through the ranges and compound your ill health even further.

[Cinka in reply to pennyannie]

Thank you for that. I will check out the info on the link. 🙂

[pennyannie in reply to Cinka]

I'm not sure if you have this research :

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

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

[Cinka in reply to pennyannie]

No, I have no detailed info at all. Have downloaded the 2 links and will check out everything. Thank you 😊

[pennyannie in reply to Cinka]

OK then - I have Graves and went through RAI thyroid ablation back in 2005 - a treatment I deeply regret - and now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism, but back then I didn't know anything and just trusted the doctors knew best.

I became very unwell some 8 years post RAI and finding no help within the NHS and refused treatment options other the T4 - Levothyroxine i decided to self medicate and have been buying my own full spectrum thyroid hormone replacement medications some 5 years now and much improved, looking after myself.

Your thyroid is the victim in all this and not the cause - as the cause is one of your immune system having been triggered to turn and attack your body rather than defend it.

All the AT drug does is block your own thyroid hormones rising higher and higher and as your immune system calms down the dose of the AT drug should be titrated down otherwise you risk your T3 and t4 falling too far through the ranges and you suffering with the equally disabling symptoms o hypothyroidism.

If you like to get copies of your blood tests we can help explain what it all means for you and do yo have official confirmation of Graves Disease and a blood test result showing positive, over range antibodies -

generally written as - TPO - TgAB - TR ab - TSI : with a range alongside.

[pennyannie in reply to Cinka]

You are legally entitled to printed copies of all your blood test results :

Maybe register for online access to your surgery medical records - as that would be a start of getting to know what is going on and being more able to understand and take back a bit of control for yourself.

Just been looking back and see I did reply to you last year - saying similar.

[Cinka in reply to pennyannie]

I am sorry to hear of your bad experience, pennyannie 😪

I don't find it so easy, unfortunately, due to other health conditions and medications affecting concentration, causing low mood, ètc., to take more control, so have been resigned to trusting the medics, which, at the end of the day, we should be able to, but I may ask for a second opinion.

Are you in UK?

Thanks for responding.

Take care xx 🙂

[pennyannie in reply to Cinka]

Ok then - no worries - I'm sorry you have other health issues - yes - I 'm in Cornwall.