Graves’ disease : quite new here. Diagnosis... - Thyroid UK

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Graves’ disease

Chopin002 profile image
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quite new here. Diagnosis Graves’ disease, currently taking methimazole 5 mg twice daily. Also have AFib from high heart rate.

mostrecent blood tests show t4 is now normal14. At worst was 53. T3 is 5.7 was 11.8. Problem is the the tsh is still .01. Ferritin only 24. How to increase Tsh ?

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Chopin002
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Jazzw profile image
Jazzw

Hi Chopin002. You’ll probably find that doctors fret about suppressed TSH but it’s very very common for people who have Graves to have a suppressed TSH for quite some time after treatment has effectively sorted the overactive thyroid.

TSH isn’t actually a thyroid hormone, it’s the hormone that is produced in your brain to prompt your thyroid to make thyroid hormones.

It’s thought that the high levels of T3 and T4 in the blood stream damages the receptors that detect levels of thyroid hormone, meaning the hypothalamus and pituitary glands don’t seem to sense the levels of thyroid hormone in the blood.

There’s lots of research out there that your doctor should be able to look up if they’ve never come across this before (it’s often the case that they don’t know this can happen!).

So please don’t worry. There’s nothing that can be done to get your TSH levels back to normal—it’s likely to take time (and to be honest, there’s a chance they’ll never go back to normal). The most important thing is that your T3 and T4 levels have come down.

Hope you’re feeling lots better.

pennyannie profile image
pennyannie

Hello Chopin :

Can you please share ranges at diagnosis - for the T4 at 53 and the T3 at 11.80 and which antibodies were found positive and over range in this first blood test :

You are being treated for Graves disease which is an Auto Immune disease and currently the antibodies / proteins circulating in your blood are ' sitting / stuck on ' the fine follicles of the TSH receptors -

which pushes down the TSH which in turn then ramps up thyroid hormone production, over and above the ranges causing a multitude of scary symptoms and Graves is considered life threatening if not medicated and the medication is an Anti Thyroid drug and a beta blocker if your heart is under pressure.

Your TSH may increase when this first phase of Graves is over and your immune system has calmed back down again and the antibodies are negative.

There is no cure for Graves - it is a poorly understood and badly treated AI disease with stress and anxiety being common triggers -

and all the AT drug does is' buy you time ' while we wait for your immune system to calm back down again and hopefully, given enough time, your thyroid will reset itself without the need for any drugs.

In the UK the NHS allocate a treatment window with an AT drug of around 15-18 months and once your T3 and T4 thyroid hormones start to fall back down into the ranges the dose of the AT drug is titrated down.

We need to try and keep your T3 and T4 around midway through the ranges as if T3 and T4 fall too far through the ranges you risk experiencing the equally disabling symptoms of hypothyroidism.

When metabolism runs too fast as in hyperthyroid or slow as in hypothyroidism the body struggles to extract key nutrients through your food no matter how well and clean you eat -

and non optimal levels of ferritin, folate, B12 and vitamin D can compound your ill health further than necessary.

Your ferritin is very low and in the UK would be flagged as needing further investigation before supplementing with iron tablets or having an iron infusion.

For reference I now aim for a ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D up at around 125.

How are your eyes - are you aware of any dryness, grittiness, light sensitivity, or excess watering - if using any preparations - please ensure all are Preservative Free .

We do now have some research you might like :-

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

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

The most well rounded of all I researched is that of Elaine Moore - books and now website - elaine-moore.com

You can go back into your post to add the T3 and T4 ranges if you have them -

just press More - go into Edit - redo whatever you like - and press Edit Response when finished :

Chopin002 profile image
Chopin002 in reply topennyannie

Thank you for your reply. Very helpful in trying to understand what is happening. I am so grateful for the people that take time to answer , it’s better than the doctor,. For 6 years I was on the PMR, GCA , site with information so valuable would not have made it without them, Seems the same here. Not sure which antibodies over in beginning but I’ll check,

pennyannie profile image
pennyannie in reply toChopin002

On your paperwork it probably looks like a TRab - a Thyroid Blocking anti body - or a TSI - a Thyroid Stimulating ab or possibly written as a TSH Thyroid Receptor ab reading with a single number and cut off :

Can you please check the ranges used in your blood tests - especially this last one -

as your T3 and T4 now ' look' to be in most ranges we see - and so now the AT drug should be reduced , if it hasn't been already, and your thyroid hormones T3 and T4 maintained with a T4 at around 50% through its range with the T3 tracking just behind at around 45% through its range.

Are you still with symptoms or now just feeling totally wiped out -

Your body has been in a heightened state and there can be something of a brain / body mismatch with your brain very active and wanting to achieve many things but your body too exhausted to do much other than get out of bed to just sit on a sofa -

it is a slow build back and your body needs time to restore, replenish and rebuild itself - just go one step at a time - I'm not aware anyone bounces back from Graves.

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