General query

[SnowQueenOne]

Hi all

General query but is it possible to get Graves symptoms before they actually show up in blood tests?

I've been feeling off for a few weeks now. Legs feel wobbly and weak, occassional, very slight hand / finger tremors, tired but wired so sleep affected and appetite has ramped up.

GP said last bloods were fine (tsh = 2.1) which I know isn't a reliable indicator but they couldn't/wouldn't test for the full works. The nurse who took the bloods said their system doesn't give the option to request testing for the full panel.

It takes me months just to get an appointment for bloods as the surgery had completely ignored my Endo's request (back in 2021!) to keep a close eye on things.

I'm due a conversation next week over something else so just wondered if anyone has any advice as feel like it's an uphill battle all the time with them.

Thanks in advance

[PurpleNails]

It’s possible your TSH is in range but not reflecting abnormal FT4 & FT3. TSH is unreliable & can often drag significantly behind FT4 & FT3.

Many are told all ok is TSH ok & that’s not true.

Was Graves’ disease confirmed with positive TRab or TSI antibodies?

Do you currently take any thyroid medication ?

Maybe arrange private test to include FT4 & FT3 to find out what’s going on.

[SnowQueenOne in reply to PurpleNails]

Hi

Thank you for your reply. Yes Graves was confirmed with both TRab and TSI antibodies. No, I'm not medicated. Was started on carbimazole and it became clear very quickly I couldn't tolerate it, even with reducing doses. Felt so poorly. Diagnosed May 2021 and by the end of that year things had levelled out. Symptoms started to reappear Dec 23, bloods in Feb 24 confirmed it'd returned. Went on NHS waiting list as private Endo completely inundated. Symptoms started to ease around May 24 but started to make themselves known last month. In no man's land as no sign of NHS appointment & can't get back in with private Endo.

[pennyannie]

Hey there again -

Considering you actually have a TSH reading well in the range - I think, this tends to rule out Graves Disease, though Graves is known to wax and wane throughout one's life.

When the immune system attacks the thyroid there can be some overlap in the antibodies found - but if TRab - are positive - Graves treatment takes precedence as this AI disease is considered life threatening if not medicated - and the medication is an AT drug - you couldn't tolerate Carbimazole and for some reason - you were not offered the alternative drug PTU.

I don't think we have ever seen your blood tests at diagnosis - and can you please share your initial blod tests and the TRab / TSI antibody reading and range from 3 years ago.

I just wonder if your symptoms now are more in keeping with Hashimoto's - another Auto Immune disease which can present in a similar but which is not medicated as the symptoms are not ' as acute ' and the thyroid reverts to normal itself but with erratic own thyroid hormone production as this AI disease persists is attacking the thyroid until such time as the gland is totally destroyed and disabled.

Without some blood tests results to read, follow and understand - everything is but a guess -

It will be in your best interest to arrange your own Private blood tests as previously suggested and you can find a full list of companies offering this service on the Thyroid UK website - thyroiduk.org

Most Private companies offer a thyroid function test which includes testing for TPO / TgAB the Hashimoto's antibodies - and Medichecks offers a further blood test for the Graves antibodies.

medichecks.com/products/tsh...

[SnowQueenOne in reply to pennyannie]

Hi

Thanks for your reply. No idea why I wasn't offered an alternative to Carbimazole.

I'll have to look back through emails to see if I have those results from my original diagnosis.

I have wondered whether I've gone more towards Hashimoto's but as it's a battle just to get blood tests arranged I'm exhausted with trying to get answers or any support from my GP.

I know Graves can wax and wane so part of me thinks I'll just have to ride it out for now. Just in no man's land!

[pennyannie in reply to SnowQueenOne]

Living in this limbo land of not knowing - is in itself a level of stress and anxiety that will only fuel further health issues -

I'm afraid it looks like you do need to take some control by either getting the necessary blood tests run yourself and posting the results and ranges on here for considered opinion and suggestions on your next step back to better thyroid health -

or arrange to see a thyroid / endo specialist who comes recommended either through Thyroid uk or a forum member who can monitor and treat you as needed.

[Westie_1]

Hi, SnowQueenOne in response to your question my answer is yes. I have had Graves’ disease since 2011. I know from my symptoms myself when it is starting to ramp up again without bloods being done. Go with your own body and what it is telling you as you know better than anyone else. Hope this helps?

[SnowQueenOne]

Hi Westie_1

Thank you for your response.

It's a relief to hear that TBH. I found out someone at work also has it and said the same.

I was supposed to be having a telephone call with the GP on Monday over something else so was going to mention it. The call never came! So back to putting in an online request and waiting. Again! Take care