Graves and underactive thyroid.

Hello, I was diagnosed with Graves about 8 years ago, eventually the correct number of carbimazole found a good balance. This year my weight has increased I am permanently exhausted, called my G.P. after they consulted the hospital, I was told to reduce my medication by a very small amount for 4 months. My blood test are not in till August, but I feel absolutely rotten. My weight is still climbing, still sleeping a lot, and my temperature has gone back to pre carbimazole levels. The temperature thing is very odd considering ? sorry this is so long, and rambling.

[SlowDragon Administrator]

Welcome to the forum

What were last test results

How much Carbimazole were you taking….and what was dose reduced to

Have you had Graves’ disease definitely confirmed by testing TSI or TrB antibodies?

Blood should be retested 6 weeks after changing dose in Carbimazole

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once for autoimmune hypothyroid disease called Hashimoto’s. Hashimoto’s frequently starts with hyperthyroid results and symptoms before becoming increasingly hypothyroid

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum with Graves or Hashimoto’s. Low vitamin levels are extremely common

Recommended that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

[Hidden in reply to SlowDragon]

Hi, thank you for your response. It has been confirmed I have Graves Orbitopathy. My 12.5 mg per day, carbimazole have been reduced to 10 per day. My Serum free T4 level is 9.8 my TSH. is 5.75. Full blood count Borderline, Urea & Electrolytes. & lived function test normal. Have spoken to G.P Practice and they confirm my blood test will not be until August ( due to the Hospital telling them this. ) Thank you.

[SlowDragon Administrator in reply to Hidden]

That’s too long to wait to retest …..and possibly too small a reduction in Carbimazole

What’s the range on Ft4

TSH is far too high

You need vitamin D, folate, B12 and ferritin levels tested NOW

When exactly was dose Carbimazole reduced

[Hidden in reply to SlowDragon]

Hi, my Carbimazole was reduced 8 weeks and 1 days ago ( not that I am counting ) I am going to contact my doctors again today, if no joy I will try to get a private consultation with a endocrinologist ? Thank you.After joining this forum I take comfort in the fact I am not alone, wonderful web site.

[SlowDragon Administrator in reply to Hidden]

Retest levels privately BEFORE booking any consultation otherwise consultation is waste of time and money

ideally push GP to test vitamin D, folate, B12 and ferritin now

If they won’t

Suggest you Test vitamin D now

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Then get full thyroid and vitamin testing 6 weeks after reducing Carbimazole

[helvella Administrator Thyroid UK]

You absolutely should have a blood test immediately. Simple as that.

You could need to stop Carbimazole altogether. If so, leaving you taking any is gross mismanagement of your situation.

There is not a calendar that says your body can't change until August. So why on earth do you have to wait until then for a blood test?

[pennyannie]

Hello Kumaok and welcome to the forum :

Can you please confirm that you have tested positive for Graves Disease antibodies :-

and have an over range reading for either :-

TR ab - written as a Thyroid Receptor Blocking antibody or a TSI - written as a Thyroid Stimulating antibody ?

As you will see these are 2 extreme ends of symptoms and at any one time either stimulating or blocking antibodies can be at play causing havoc with your thyroid and giving you a myriad of symptoms.

Graves is an auto immune disease that tends to get diagnosed when it starts to attack the thyroid and eyes and something has triggered your immune system to turn and attack your body rather than defend it.

Everybody's journey with Graves tends to be unique to them but stress and anxiety tend to be common triggers factors and there is likely a genetic predisposition and possible an uncle/aunt a generation away from you with a thyroid AI health issue.

All the Anti Thyroid drug does is block your own daily thyroid hormone production and slowly your T3 and T4 levels should fall back down into the range and your symptoms, hopefully relieved.

It's a bit like an aeroplane being put in a holding position, waiting to land -

So with your thyroid - the AT drug allows us to play for time while we wait for your immune system response to calm down and your thyroid revert to normal function again, without the need for any anti thyroid medication.

As your T3 and T4 fall back down into range the AT drug is usually titrated down as otherwise you can fall too far through the T3 and T4 ranges and suffer the equally disabling symptoms of hypothyroidism.

Your Graves antibodies can also be running high and these can also impact on your symptoms and why regular monitoring and blood tests are necessary - though blood tests tend to run behind symptoms being tolerated.

When metabolism is running too fast, or too slow, as in hyper, or hypo - thyroid - the body struggles to extract key nutrients through food, no matter how well and clean you eat.

When metabolism is running too fast or too slow our core strength vitamins and minerals tend to nose dive through the ranges compounding our health issue - so try and also get your ferritin, folate, B12 and vitamin D blood tests run.

The most recent research we have is suggesting the longer the patient stays on the AT medication the better the long term outcome for the patient :-

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

You might like this research paper and quite why this treatment option is still a first line treatment option in a health care setting I really do not understand :

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

You might like to read around Graves and recommend all of Elaine Moore's research and books - and I found the website more easy to understand - though I only started my learning curve into Graves 10 years post RAI thyroid ablation a treatment I deeply regret but given no option back in 2004/5 and knew no different.

elaine-moore.com

You can also read further around both hyper and hypo - " thyroid- ism " on the Thyroid UK website - who are the charity who support this amazing forum - thyroiduk.org