Overactive thyroid medication not working

[anka22]

Halo, Im 46 years old , 5 weeks ago I have been diagnosed with overactive thyroid with terrible symptoms, ended up on A&E. I was prescribed carbo 20mg and sent to GP for monitoring. My last blood test revealed liver function ALT over 390 , also white cells in blood dropped significantly. Gp send me to hospital AECU dept . The consultant in hospital confirmed the medication were not kind on me , messing with my blood and liver with minimal improvement on thyroid hormons. TsH 0.01 , F4 56 ( was 65 before meds). Dr was no sure what to do next, and advised to stop taking the medication and wait for a call from hospital. .My first Endo appointment is arranged on 9th March. I still haven't received any call from hospital. I feel really rough with heart palpitations, profound sweating, weak muscles, general tiredness etc. I never had any tharoid problems before and Im not sure what to do next and what to expect really. I would appreciate some help!

[PurpleNails Administrator]

Welcome to forum.

Sometimes carbimazole causes a reaction & a drop in white cells occur.  If it’s severe the medication can’t be taken.

The A&E doctor may be being cautious if the drop is mild. 

There is a second option anti thyroid called PTU (propylthiouracil) it works differently but it can also cause side affects & is considered harsher on liver.

 Not all hyperthyroidism is continuous, it can sometimes be transient.  Your first step should be to ensure doctors test thyroid antibodies.  

TSI - Thyroid-Stimulating Immunoglobulin (signifies hyper Graves) 

TRab - TSH receptor antibodies (TRAb) (signifies Graves) 

TPOab (Thyroid Peroxidase antibodies) (autoimmune, both Hashimoto’s & Graves) 

TGab (Thyroglobulin antibodies) (autoimmune, both Hashimoto’s & Graves) 

Doctors can often assume you have Graves & treat based on the appearance of hyper levels without checking.    So very important to establish cause of hyper.  

Hashimoto’s referred to as autoimmune thyroiditis is caused by autoimmune damage to thyroid & ultimately the damage leads to under-active thyroid levels which require replacement hormone.  

With Graves they thyroid is being stimulated and is usually treated with antithyroid for about 18 months.  Doctors are aiming to control level until the overproduction goes into remission.  If this doesn’t look possible, or you can’t take either form or antithyroid,  doctors will suggest more permanent treatments early on.  

Try not to jump to conclusions & worry about what you might need to decide on - as really you don’t know what you are dealing with, & you may not need continued antithyroid & if you do you may still be able to take a medication.

The other options doctors may bring up are either surgery to remove full or part of thyroid or a pill/drink of radioactive iodine which the thyroid absorbs and the radiation destroys some (most) of the thyroid.  

If you get to this stage we can share more information & people can share their experiences.  

In meantime doctor often prescribe propranolol to help with symptoms of hyper, particularly palpitations.  This can help you manage although it won’t address the underlying cause.  So this is something to discuss. 

Also important to see TSH, FT4, FT3, key nutrients, folate, ferritin, B12 & vitamin D.   Have these been tested? 

Lab ranges so alway needed a ranges vary. Usually in (brackets) after result. 

Hope the hospital call back soon & you get some answers. If you don’t hear, chase up.

Keep posting any questions you have.

[Eli994]

hi anka22,

So you should see your gp or go back to the hospital, you can be started on a beta blocker for your heart, which will help with those palpitations. I understand completely where you are coming from it’s horrendous and only makes your anxiety worse.

See your gp or go to hospital as soon as you can, because an elevated Hr for a period of time with hyperthyroidism can lead to other heart problems. Try ringing your endocrinology department yourself also. But I wouldn’t be waiting until the 9th of March.

[pennyannie]

Hello Anka and welcome to the forum :

It's not that the AT drug isn't working it's probably that you are not on the right dose yet.

Make an urgent appointment with your doctor as at least s/he can prescribe a beta blocker to help control some of these symptoms you are dealing with.

It is also likely that your doctor can speak directly to the endocrinology department at the hospital and talk about adjusting your dose of the AT drug and speeding up the appointment for you.

[tattybogle in reply to pennyannie]

Carbimazole was stopped due to potential signs of the adverse liver reaction happening ( a known risk factor, and serious ) .. meaning carbimazole probably can't be continued or adjusted up ... but the endo needs to decide that ... PTU is the other possible option for an anti-thyroid drug when this liver reaction occurs to carbimazole , but again endo needs to advise on that, not GP.

GP can prescibe beta blockers though in the meantime if appropriate .

[pennyannie in reply to tattybogle]

Sorry - I don't understand ?

OK - got it - I think - should have typed wasn't working for you and not isn't working for you - thank you :

[tattybogle in reply to pennyannie]

Carbimazole has a known side effect (that is fortunately rare) of causing problems with the liver function

( i don't know the technical details , but it's potentially very serious, cos its your liver )

When this happens it must be stopped straight away to protect the liver function and can't be continued.

PTU can be tried instead (even though it is capable of causing a similar liver problem) because some people who have the reaction to carbimazole don't have the reaction on PTU .

However if both Carbimazole and PTU cause the same liver issue .. then neither of them can be used safely .. and if the hyperthyroidism is too severe to be tolerated safely , or symptoms cannot be under control using anything else .. then that just leaves Thyroidectomy or RAI as the only ways to get T4/T3 levels down .

[pennyannie in reply to tattybogle]

I'm sorry but I'm confused as to why you are telling me this :

[tattybogle in reply to pennyannie]

oh right .. soz pennyannie..it was just because i thought you hadn't realised why Carbimazole dose can't be increased.

[samaja]

HI anka

I presume you were diagnosed becuase they checked Graves antibodies but it's definitely worth checking what the diagnosis was based on. Always get copies of all test results and never just go on normal or within range. You thyrod tests miss the most important thyroid hormone which is free T3 and also becuase of you age I would assume you might be perimenopausal which is itself may mess you other hormones including thyroid and give you palpitations and loads of other symptoms. It would be advisable to see a hormone/menopause specialist too. And the most important thing (which you already started) is to educate yourself about thyroid and other hormones as much as you can because sadly most doctors, including endocrynologists, have very rudimentary knwoledge about it all and cannot be relied on to give you best info/treatment possible.

[tattybogle in reply to samaja]

Graves antibodies (TRab or TSI) are often not checked until endo does it .. GP's rarely seem able to authorise this test . (it's not unheard of , but it's usually the endo who does it )

anka22: The antibodies that cause the thyroid to make too much Thyroid Hormone (T4 and T3) in Graves Disease are called :

TRab (Thyroid Stimulating Hormone Receptor antibodies )

TSI (Thyroid Stimulating Immunoglubulins)

They work by being the same 'shape' as TSH (Thyroid Stimulating Hormone )which is what normally stimulates the thyroid to make T4 and T3), but they are not TSH , but they fit onto the same TSH receptors on the thyroid gland .. and they make it make 'too much'

If / when the levels of TRab eventually go down again the thyroid stops making too much .

So if it turn out you have Graves Disease , then this is what is happening .. however there are other reasons for the thyroid to make too much thyroid hormone.... so until you know whether TRab / TSI test results are 'positive' , you won't know for sure what he cause of your high T4 is .

[anka22]

Thank you all for your responses, just to clarify , I had f3 and f4 test done , f3 was in normal range , thy also did antibodies test in hospital and based on that Dr believes it is autoimmune issue, didn't exactly specify Graves as it should be Endo that diagnose that. My GP prescribed beta blocker but I don't see benefit as yet. Im trying to move the appointment with Endo forward which is not easy .Perhaps consider private Endo?

[tattybogle in reply to anka22]

Hospital may possibly have tested TRab ( specific to Graves Disease.. which is also 'autoimmune')

However they may have only tested TPOab (Thyroid Peroxidase antibodies) which are diagnostic for Hashimoto's ( also 'autoimmune' ,that ends up hypothyroid but can often start with a transient period of 'hyperthyroid looking T4 levels).... but TPOab are also present in many cases of Graves.. so if these are what hospital tested then all it really tells them is that it is either Hashimoto's or Graves, but not which .

i would try pushing the NHS first .. some people have had faster appointments by ringing endo's secretary frequently an asking for any cancellations.