over active thyroid

[Brinne]

Hi, I have been recently diagnosed with an over active thyroid following a barrage of symptoms which misled me to believe I was going through menopause. Fast forward I am having medz, I’m having pains in my throat and my eyes hurt like heck. (Graves disease) not nice and wondered as I am a newbie, does anyone have any information that they would like to share that may help me over come this crap? Because I am convinced i got this due to being constantly stressed and living on the edge with an autistic/adhd child. Anyway rant over thanks for reading 🤯

[Buddy195 Administrator]

Welcome to the forum Brinne

So we can offer better advice, can you share blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

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

What medication have you been prescribed? How long have you been taking it?

Correct antibody testing is extremely important (I was initially diagnosed with Graves but later tests showed I was underactive with Hashimotos, plus TED)

Correct antibody tests:

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

Regarding your eyes:

Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).

I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.

If you notice changes in your eyes (swelling/ changes in alignment), I recommend you take ongoing photos of your eyes and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.

Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.

I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.

Regarding stress:

Stress can play a huge part in triggering thyroid issues. It’s important to rest as much as you can and reach out to others for support. This forum is invaluable to so many of us. We are here to help and support you, so keep posting and asking questions. 🦋

[Brinne in reply to Buddy195]

good morning Buddy195

Firstly I am pleasantly surprised by all the information and advice you provided so a huge thank you. I will try and respond in order of your questions. Firstly my tests were done on 21 September results are as follows:

TSH 0.02

T3 23.3

T4. 49.9

MEDICATIONS

Carbimazole 30 mg

Propranolol 20 mg 3 x day

I have a pretty decent GP so will tell him about the anti body tests.

I saw the consultant 6 weeks ago and recently repeated my bloods to check levels again I guess.

Consultant said I have graves and he knows by the lidlag from one of my eyes.

He said he would take some tests to confirm

I will start taking the selenium and some ibruprofen which makes sense due to the anti inflammatory action.

For my eyes I am using Hycosan extra which provides some relief.

If I’ve left anything out let me know

Thank you so much for your invaluable advice

[Buddy195 Administrator in reply to Brinne]

It’s helpful to add ranges (in brackets after test results) as these can vary between laboratories.

I would 100% push for the correct antibody tests so you are certain about a diagnosis.

I had so many ‘hyperthyroid type symptoms’ (weight loss, palpitations, tremor, fast heart rate, eye swelling etc) which led to me being misdiagnosed by an endocrinologist as Graves. It is possible to have TED (like me) with an underactive thyroid, ie Hashimotos (and some even have TED who are euthyroid, ie have no thyroid issues).

I would contact TEDct for their free information pack. They too are a very supportive group. They helped me find a TED specialist ophthalmologist in my area.

Very best wishes to you 🦋

[Brinne in reply to Buddy195]

Hi

I will most definitely be taking up your recommendations and cannot thank you again

I felt lost alone and mis understood so really appreciate this space

My blood tests results are below

T4 = 49.9 pmol/L normal range 10.8 to 25.5

T3 = 23.3 pmol/L normal range 3.1 to 6.8

TSH = < 0.02 mlU/L normal range 0.27 to 4.2

[Buddy195 Administrator in reply to Brinne]

I feel the same; I’m indebted to this forum for advising me to push for correct antibody tests and also for promoting testing (& supplementing if needed) key thyroid vitamins of ferritin, folate, vitamin D and vitamin B12)

It’s worth coping your results/ ranges and current medication in your bio/ profile, so it’s all in one place. You can then add to this when you have further tests.

[Brinne in reply to Buddy195]

I am an aesthetician so I usually dose myself with B12 and vit D. But will go and test actual levels. Will contact TEDct x

[PurpleNails Administrator]

Welcome to forum.

How much ?carbimazole? have you been given & how long have you been taking it? Was it antithyroid only? Sometimes propranolol is prescribe too.

It’s important you have a repeat blood test 6 weeks after taking it. You almost always need a dose adjustment to keep your thyroid levels stable ( not too low or too high)

Have you been referred to endocrinology? You may need a separate referral for ophthalmology is your eyes are affected. I found my GP & specialist not helpful with regards to eye issues & I went via an optician who recommended a referral.

[Brinne in reply to PurpleNails]

Good morning

And thank you so much for taking the time to answer me.

I am currently on 30mg carmimazole and io to 60mg on propranolol

Just repeated bloods a couple weeks ago been talking meds from October.

Regarding eyes I found that all NHS Stafff ask the same questions how long has it been? I feel they only make referrals after a period of time. I will insist on a referral .

Thank you so much

[NewbieHyper]

I was diagnosed a little over a month ago. I also believe mine was stress induced. Anywho I had neck pains for a few days early on in treatment with Mercazole. It went away though as did the pains in my feet. My eyes also felt Grainy and dry the first week on meds but that went away too. Hang in there, you will start feeling better. It took around 3-4 weeks for me.I find that I tolerate carbimazole better than Mercazole. So far little to no side effects.

I've also worked on my mental health by slowing down and accepting help.

All the best.

[pennyannie in reply to NewbieHyper]

Hey there - welcome as well -

obviously all I've written above / below is likely relevant to your situation as well -

best to start your own posts/questions as then we can help you better :

[Brinne in reply to NewbieHyper]

Good Morning

I take Carbimazole and o have t felt any side effects

I am trying to take it easy, and no longer respponding or dealing with things I can avoid.

I know mine is stress related and all I can say is thank god I do not have another stress induced illness.

Hope I feel better soon. X

[pennyannie]

Hello Brinne and welcome to the forum :

Graves is an auto immune disease and generally diagnosed when the thyroid and or eyes start to cause issues - and the cuase is one of your immune system having been triggered to turn and attack your body rather than defend it.

Everyones journey with Graves is unique to them and why it is so poorly understood but there is likely a genetic predisposition and something has triggered your immune system to go on the attack and stress and anxiety seem to be common trigers.

There is no cure for Graves and Anti Thyroi drugs are prescribed to semi-block your over production of thyroid hormones and slowly your T3 and T4 readings will fall back down into the ranges and hopefully your symptoms relieved.

There most commonly prescribed at drug is Carbimazole - but there is an alternative PTU -Propylthiouracil - please read, keep and understand the Patient Information Leaflet - PIL.

The NHS generally allocate a treatment window of round 15-18 months with the AT drug and you should have regular blood tests and adjustments to the AT drug as otherwise if your T3 and T4 fall too far through the ranges you risk the equally disabling symptoms of hypothyroidism.

Hyperthyroidism and hypothyroidism are the extreme opposite ends of the T3 yardstick and quite where your T3 and T4 need to be within the ranges to give you back your wellness is what we need to find.

It will be a good idea to keep a list of symptoms experienced and hopefully tick these off and it will also help the endocrinologist adjust you dose throughout the process - as blood tests tend to run behind symptoms experienced.

Thyroid UK - www,thyroiduk.org - the charity who supports this forum also holds a list of sympoms of both hyper and hypo symptoms and it does get confusing as some symptoms sit in both camps - but it helps to keep you focused as this first phase of Graves progresses.

When metabolism is running to fast as in hyper or too slow as in hypo - the bodt struggles to extract key nutrients through food -no matter how well and clean you eat - so please also arrange blood tests for ferritin, folae, B12 and vitamin D as if these core strength vitamins and minerals are not maintained at optimal levels your health is further, unnecessarily compromised.

Obviously we need details of your original blood test results and ranges and the antibody found positive in your bloods which has caused this health issue and we can explain this is more detail when we see these radings alongside the core strength vitamins and minerals.

If your eyes are hurting, dry, sore, gritty, or excessively watering - whatever options you use - please ensure all preparations are Preservative Free - even those prescribed by the NHS.

For all things Graves Disease - elaine-moore.com

We do now have some research papers which you might like to keep for future conversations :-

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

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

[Brinne in reply to pennyannie]

Thank you so much for this invaluable information

I have put the blood test results in my reply to Buddy195 So please feel free to have a look and offer advice if you can. The pain in my neck does not feel like a sore throat more like. Heart burn

Thanks again

[pennyannie in reply to Brinne]

What ever this feels like in your neck - you are not the expert - and this needs sorting out as it can be a reaction to the AT drug :

I was advised to go directly to A&E if I had any issues with Carbimazole :

Sorry about the several typos above - I 've just tried to tidy up the glaringing obvious ones - I think my laptop keeps skipping letters - or more likely it's me - trying to write the next sentence before I've finished the last one.

The antibody blood test should have already been run - as the medical evidence of why you have been prescribed these drugs - we are looking for a TRab - reading/range - generally written as a Thyroid Receptor antibody - you can't diagnose Graves Disease from a lid lag - :

Please contact the Thyroid Eye Disease Charity - tedct.org - as you will be signposted to your nearest specialist clinic = generally attached to large teaching hospitals - where endos and eye specialists with an interest in Graves /TED work together with you to find the best treatment options in this very specialised field.

There are 2 main thyroid antibodies that can be present in your blood at any given time - as with Graves it can be a roller coaster of symptoms from hypo to hyper - very much like a big dipper funfair ride - though no fun at all - and back again, and again, if your immune system is very upset and active.

If your Graves are raging and are unable to find a dose of th AT drug that relieves symptoms there is the alternative treatment option of Block and Replace -

this is where the AT drug is prescribed at a higher dose to fully block your own new daily thyroid hormone production and a prescription for T4 - Levothyroxine - is introduced so to maintain your thyroid hormone production at a measured dose so you do not fall too far through the T3 and T4 ranges and experience the equally disabling symptoms of hypothyroidism.

We can experience TRab blocking - or TSI stimulating - and a ' neutral phase which is when these 2 extremes of symptoms can burn themselves out - cancelling out their power - leaving you feeling pretty much ' ok ' .

[Knowsnothing]

If you are on Carbimazole and have a sore throat contact your Gp practice and tell them you are on Carbimazole you may need a blood test, there is a serious condition that causes your white blood cells to drop and one of the symptoms can be a sore throat, it is very rare but it does happen.

[Brinne]

Thank you

Mine is more of a heartburn than a Sore throat