No TSH 0.01

[Muirend20]

I have no TSH 0.01 have no thyroid had my medication reduced to try rise it but not working have had no TSH for years. Can anyone give me advice or ask the doctor questions thanks

[PurpleNails Administrator]

Can you tell us your history?

Did you have surgery? If so when & why. Were you previously hyper? as being hyper can leave TSH very unreliable.

Mine been suppressed for over 7 years. It rose fractionally once when thyroid levels were kept bottom of range for several months.

Has you FT4 & FT3 been tested or is doctor just looking at suppressed TSH. Labs often tests if TSH abnormal. What are results & ranges.

How much Levo were you taking & how much is the reduction suggested?

[Serendipitious in reply to PurpleNails]

Do you know what happened at the time when it dropped so low? Assuming it was fine at some point.

[PurpleNails Administrator in reply to Serendipitious]

At diagnosis my TSH was undetectable, FT4 fractionally over & FT3 nearing 2x normal range.

I obtained my old hospital & GP records trying to establish what my baseline normal might be. I’d only had 1 previous thyroid test which was arranged to looking at thyroid antibodies as I had appearance of Thyroid Eye Disease. The antibodies were negative but the function was TSH undetectable, FT3 fractionally above. FT4 midrange. I was told at time it was normal and wasn’t check again for over 4 years.

So I’ve no idea what my normal was. I always suspected I was hypothyroid but I wasn’t tested, even through my pregnancies. My TSH might always been low or at some stage it might have been high but there’s no recorded history.

[Serendipitious in reply to PurpleNails]

At diagnosis my TSH was undetectable, FT4 fractionally over & FT3 nearing 2x normal range.

Were you diagnosed as hyperthyroid? Sounds the opposite to hypothyroidism. Sorry to hear about your experience.

[PurpleNails Administrator in reply to Serendipitious]

Yes hyperthyroid (from toxic nodule) never had hypo diagnosis.

[PurpleNails Administrator in reply to Serendipitious]

Just to explain further.

The poster is hypothyroid and takes replacement hormone. It is being suggested they lower the replacement (whether is levo / lio / NDT) so FT4 & FT3 is reduced and then TSH would rise.

The reverse would apply to me I am currently hyper & without medication (Carbimazole - an antithyroid) my levels rise. if the antithyroid is increased the FT4 & FT3 would lower and in theory the TSH should rise.

Although keeping levels low doesn’t not guarantee the TSH ever responds and didn’t happen with me.

[Serendipitious in reply to PurpleNails]

Thanks good to know. I wasn’t sure if they were hypo or hyper.

Wish I had the answer on how to raise TSH. I’m in a similar situation. Have switched from Metavive back to Levothyroxine. Some good things and some not so good things. TSH has not budged still a few months on.

[Jazzw]

Your doctor’s being illogical. If you have no thyroid, raising your TSH won’t result in your thyroid producing thyroid hormones—because you don’t have a thyroid.

Depending on why you’re thyroid-less, it may be completely irrelevant that your TSH is suppressed. If for example you had Graves Disease it’s not uncommon for the TSH response to never fully recover.

Did your doctor test FT3 and FT4 before beginning their experiment with your wellness? Did you feel overmedicated? How much thyroid hormone do/did you take?

[Serendipitious]

Feel for you. My TSH is incredibly low and is showing no signs of rising. I do have a thyroid. Very frustrating I know. Sorry I couldn’t offer any advice in your case, but interested to know of people's experiences.

[SlowDragon Administrator]

What was reason for thyroidectomy

What replacement thyroid hormones are you currently taking

What vitamin supplements

Most important results are always Ft3 followed by Ft4

Plus GOOD vitamin levels

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

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially after Graves’ disease/RAI or if under medicated

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before 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

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

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

[pennyannie]

Hello Muirend and welcome to the forum :

Snap !! I too haven't a thyroid and my TSH is exactly where yours is at 0,01 :

I have Graves Disease and had RAI thyroid ablation back in 2005 and found myself in an ever decreasing circle of wellness when my thyroid hormone replacement was reduced because of my TSH reading.

The TSH reading is reliant on the Hypothalamus / Pituitary / Thyroid axis working well :- but since you haven't a thyroid - this feedback loop is incomplete and it is an extremely unreliable and limited measure of anything once on any form of thyroid hormone replacement and especially since you haven't a thyroid and this HPT axis broken.

It is essential that you are dosed and monitored on your T3 and T4 blood test results and not a TSH reading which seems to be all you will have likely had run in primary care.

We generally feel at our best when our T4 is in the top quadrant of the range as this should convert to a good level of T3 - and it is your level of T3 that gives you your wellness.

The thyroid is a major gland responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual well being, you inner central heating system and your metabolism.

Do you have any detailed blood tests and ranges as forum members can explain these to you if you care to share them ?

I had to pay my surgery and laboratory to test my T3 and T4 :

If you go into the Thyroid uk website who are the charity who support this forum you will see there is a page of private companies who can run the appropriate blood tests for you if your doctor refuses.

I know it seems strange that you can't gt the help in primary care, but there are other options open to you if you find your surgery can't process the necessary blood tests.

Ideally we need to see a TSH, T3, T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D as no thyroid hormone replacement works well unless your core strength is strong and solid.

This is where we all start off in taking our own first steps back to better health and with the help and support of forum members who have been down the same road, who now come back on here, to give back and share knowledge to others, on a similar path.

[shaws Administrator]

On your 'page' you have only put your name. It is helpful if you put your background to being diagnosed as hypothyroidism. If we click on your name, it takes us to your 'page but no information is on it.

It is helpful and you don't need to repeat answers.

If you click on my name - it will take you to my page - for an example..

[klr31]

What are your T4 and T3 results? I found that my TSH was stubborn to move even when I reduced my thyroxine. To me, it doesn't seem a particularly sensitive or accurate way of testing.

Karen