Anxiety struggles after Levothyroxine reaction

[Joflay]

Hello everyone, I am new to the group and feel reassured and not alone reading all your stories and comments with regards to your Graves journey. I was diagnosed with hyperthyroidism in June 2022 and was prescribed Carbimazole, at this time I didn’t have any symptoms whatsoever apart from dry eyes. February 2023 I was diagnosed with Graves and put on a block and replace programme incorporating 50mg of levothyroxine alongside 40mg Carbimazole. From day 1 of taking levothyroxine I felt awful. My stomach was bloated and painful, I had digestive issues where I could hardly eat anything and my anxiety levels went thru the roof giving me body tremors. After 2 weeks my bloods showed my thyroid levels were far too high so the decision was made to take me off the levothyroxine and just treat with Carbimazole. I thought I’d eventually go back to feeling normal but I haven’t, I still have terrible body tremors and anxiety and feel so low because of how it’s impacting my life. Has anyone had any similar experiences to this? My medication is still being adjusted as my levels are still unstable. Any advice that this can be a normal process of Graves would be really helpful.

[pennyannie]

Hello Joflay and welcome to the forum :

You may find this posts is displayed on the Thyroid UK forum as that is where we all seem to end up - on way or another.

I have Graves and went through RAI thyroid ablation in 2005 - a treatment i deeply regret but at the time, in a state of shock - I knew no better and followed the advice given at the very first endo appointment I had at the hospital.

We now have this research paper - ncbi.nlm.nih.gov/pubmed/306...

I was put on Carbimazole - and this resolved my symptoms of insomnia - I felt well, returned to work and thought I was sorted.

Graves is an auto immune disease for which, currently, there is no cure as the issue is on of your immune system having been triggered to turn and attack your body rather than defend it.

The victim is all this is your thyroid as the cause is one of your immune system malfunctioning.

Graves is said to be stress and anxiety driven and there is likely a genetic predisposition, maybe a generation away from you, with an aunt/uncle with the thyroid AI disease.

The Carbimazole is one of 2 Anti Thyroid drugs, the other being Propylthiouracil - PTU - for short so you have an option if one doesn't suit you, and there should be a PIL - Patient Information Leaflet for reference for side effects.

There is no known way of stopping any immune system once triggered and with Graves your eyes and thyroid tend to be the main targets -

but by taking the AT drug this blocks new daily own thyroid hormone production - so stopping your T3 and T4 levels keep rising and slowly your thyroid levels come back down into range with your symptoms hopefully relieved.

It's a bit like being put in a holding position, if an aeroplane, while waiting for a landing slot.

It can also be a bit like being on a roller coaster of symptoms as when metabolism is running too fast as in hyperthyroidism or too slow as in hypothyroidism the symptoms can be debilitating.

The most current research we have is suggesting that the longer one stays on the AT drug the better the long term outcome for the patient ;

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

Some endocrinologists suggest a treatment option called Block and Replace whereby the AT drug is increased to fully block own new thyroid hormone production BUT also add in T4 Levothyroxine to keep your T3 and T4 at a measured level so you don't fall too far through the ranges and suffer the equally disabling symptoms of hypothyroidism.

It would seem you do not tolerate the T4 medication - could be the fillers - so ask to go back just on the AT drug where you felt better and your Carbimazole should be reduced accordingly.

With your metabolism running too fast, then slowed down by the drugs, your body may well be struggling to extract key nutrients through your food, no matter how well and clean you eat.

We need a strong core strength to help support the body through this difficult first phase of Graves so suggest you ask for your ferritin, folate, B12 and vitamin D to be run as these need to be maintained at optimal levels and we can advise you on this, and blood test results/ranges if you need any clarification.

Do you have online access to your medical records ?

Are your eyes involved - dry, scratchy, watery, light sensitive - just make sure any lotions, potions, sprays or grease you use are all Preservative Free - even those prescribed.

It is important to know which antibodies were found over range and positive at diagnosis and we also need to track your TSH, T3 and T4 levels from diagnosis as you go through this first phase of the disease ad you should have regular check ups, blood tests and adjustments to the Carbimazole as your Graves symptoms dictate.

Graves is a poorly understood and badly treated auto immune disease and I'm afraid everyone's journey is unique to them.

Graves carries both stimulating and blocking antibodies and at any one time either extreme can be in charge of your thyroid and there are also times of relative normality when these two extremes burn each other out.

So rest, as you may well be fatigued just sitting on the sofa, having not run the marathon, eating for England but loosing weight, and generally feeling totally uncomfortable within your skin and ill at ease.

You might like to read around Graves - elaine-moore.com - check out Elaine's section on holistic and alternative treatment and lifestyle suggestions - work/ life balance and relaxation techniques.

Hope that helps a bit - just ask questions and try to start reading up a bit.

There is a lot of information on the Thyroid UK website - thyroiduk.org - who are the charity who support this forum.

You can amend, edit, cancel anything that you written afterwards by pressing on the More Tab below the post concerned

You can read any other persons thyroid journey by pressing the icon alongside any reply they leave.

You can read all your post and replies by going to your Profile Page - top right corner on this screen saying " More ".

To reply to anybody just make sure you reply having pressed the reply button alongside their post and their name appears and we can all read everything everybody writes on this open page part of the forum.

[Joflay in reply to pennyannie]

thanks for all your advice, I have not had any issues with Carbimazole so the specialist has decided to just keep me on this one medication rather than putting me back on a replace medication. At present my levels are showing as normal, although I feel far from it. Not losing any weight and no issues with increased appetite. I’m taking a number of supplements including selenium, b12 and d3 plus practise meditation and breath work. I just hope as levels stabilise my symptoms start to ease. I’ll check out the links you have suggested too. Many thanks for taking the time to reply. I really appreciate it.

[PurpleNails]

Welcome to forum. 

Was your graves confirmed by testing Graves related thyroid antibodies.

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) Are present for 2 types of autoimmune thyroid.  One can begin with trances hyper but ultimately hypothyroid. 

The second is continuous hyper Graves’ disease & if suspected this MUST be confirmed with positive 

Thyroid-Stimulating Immunoglobulin (TSI)

TRab - TSH (or trytropin) receptor antibodies - (measures stimulating, neural & blocking antibodies)

Block & replace (B&R) is usually used when level fluctuate very unexpectedly or FT4 : FT3 is unbalance, but as you had few symptoms at first is wondering if the doctor has put you on B&R as is a way of easily & quickly controlling & masking natural levels, this will require less monitoring but the downside is that you are a higher dose of carbimazole.

Ask to try different brand of levo as it sound as if the one you have been given doesn’t agree with you.  Or you may be hypothyroid by too much carbimazole, insufficient replacement.  This make the TSH rise quicker-  doctors like it in range.  

50mg carbimazole is a high blocking level,  50mcg levo is a low starting type dose.  

Most need more -an appropriate calculation in 1.6mcg levo per 1kg body weight. 

Regular monitoring is important usually 6 weekly initially. 

Important to adjust dose by FT4 & FT3 as TSH is not reliable. 

Get a copy of lab result with ranges we can explain more. 

[Joflay in reply to PurpleNails]

thank you so much for the advice. Away from home at present but will post my lab results when I return. I am being monitored every 6 weeks which is good, it’s just a shame patients are sort of just left to find information about the condition really and not given much information about how best to manage symptoms. Thank you for taking the time to respond.

[PurpleNails in reply to Joflay]

I reread your post. I thought you had been switched to B&R but see you are now on carbimazole only (titration). What is your current dose?

[Joflay in reply to PurpleNails]

I was originally on 30mg but 2 weeks ago I was dropped down to 10mg as I had become hypo.