Graves disease symptoms normal TSH

[G172125]

I was diagnosed with graves in September 2022 and was started on PTU for 18 months which I finished in march this year. I’ve been off all medications since March and recently I’ve been feeling unwell again. I am constantly on edge and feel anxious and shaky. My hair is falling out and I feel nauseous and light headed. I had a blood test on the 3rd October that showed a normal TSH 0.69. Is it possible to have symptoms even if bloods are normal? My dr was unsure and has referred me back to endocrinology.

[PurpleNails Administrator]

TSH Very unreliable measure, especially after a period of being hyper.

Was FT4 & FT3 tested? Most symptoms depend mostly on FT3 levels as this is the active thyroid hormone.

Drs tend to stick with 18 month on antithyroid then see if Graves stays in remission, but staying on low dose longer term. Is often a better option.

[G172125 in reply to PurpleNails]

My GP said they only check T3 and T4 if the TSH is abnormal. My TSH has been dropping since I stopped my medication though. Was 2.32 in march, 1.25 in may 1.10 in July 0.69 on October. I’m unsure what to do now .

[PurpleNails Administrator in reply to G172125]

Unfortunately that is often the case & why thyroid issues do not get diagnosed / treated timely.

TSH Dropping since stopping is a sign frees could be rising.

Many use private blood testing options as a result of incomplete tests. Order Kit, sample taken by DIY fingerprick method & posted back, results available online usually in a few days. Extra fee for venous draw at clinic or home visit.

Link to private testing companies & discounts.

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

Medichecks thyroid advance a complete option. As will test TSH, FT4 & FT3. Key nutrients, thyroid antibodies.

Best to test at 09:00 fast overnight, stop biotin supplements 3\7 Prior to test - (can interfere with test process) hydrate to allow easier blood flow.

Test early in week to avoid post delays.

[pennyannie]

Hey there again ;

i replied to you in some depth 2 years ago regarding your low levels of ferritin, B12 and likely folate and vitamin D -

Have you been able to get any help with these and been tested for pernicious anemia and iron deficient anemia ?

Have you now built these core strength vitamins and minerals up to optimal as if not these may well be too low and compounding your ill health further than necessary.

It is essential to have a full thyroid panel run to include your Free T3 and Free T4 -

a TSH seen in isloation does not tell us enough and with Graves Disease the TSH a very unreliable measure of anything.

Hopefully your referral to endocrinology will be fast tracked as an existing patient and the full thyroid panel sanctioned and run in preparation around a week before the appointment so to not waste more time -

should this happen - and if there is time - share the new blood tests detailing your Free T3 and Free T4 here and forum members will talk you through what it all means and suggest what the next step is in getting yourself back on an even keel.

Please reread the replies you had 2 years ago - as they all still relevant and needed attention.

To find your previous messages just press on your Profile icon - sitting on this screen alongside the My Hub - Chat - Post - Alerts - and Menu headings :

You can of course run a full thyroid panel + the vitamins and minerals yourself and we can advise on everything now -

The full thyroid blood panel is a venous blood draw and 10/11 biomarkers - and sometimes referred to as an ' ultra ' or ' extra ' full thyroid panel - covering TSH, T3, T4 antibodies, inflammation and ferritin, folate, B12 and vitamin D .

I use Medichecks - but other companies are available - and there is page full of Private blood companies - listed on the Thyroid UK website who are the charity who support this open, patient to patient forum. thyroiduk.org

We do now have some research on Graves you may have not seen :-

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

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

I found the most rounded of all I researched is that of Elaine Moore - books and website - in particular the sections on holistic and alternative treatment options for this poorly understood and badly treated Auto Immune Disease for which there is no cure -

Are your eyes ok - light sensitive, feel gritty, dry, too watery , please ensure all OTC treatment options to ease any discomfort are all Preservative Free - even those prescribed by the NHS :

elaine-moore.com

[SlowDragon Administrator]

What vitamin supplements are you taking

ALWAYS test early morning

Get FULL Thyroid and vitamin testing

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[redhead41]

Unless the Trab is no longer present, then I believe you need to continue with the meds. If t4 and t3 get to low, then need to add levothyroxine.