Very low TSH: Good morning everyone, I have a... - Thyroid UK

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Very low TSH

Loopyloo243 profile image
11 Replies

Good morning everyone, I have a slight dilemma, I have just changed my doctors surgery and have had bloods done yesterday with the results back already, the surgery has booked me a telephone appointment with my doctor to discuss my meds. I had my TSH and T4 done in June 2020 the results being TSH0.08 range (0.27-42.0) and T4 17.5 range (12-22) today's results are TSH0.01 T4 16.0.

I am taking 125mcg of Levothyroxin and I feel fine, I have Hashimotos and I don't want the doctor to reduce my dose and I think he will and quiet honestly I don't know what to say to him can you help at all.

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Loopyloo243 profile image
Loopyloo243
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11 Replies
Marz profile image
Marz

If your GP insists you are over-medicated based on your TSH result - you need to insist that only an over range FT3 result can suggest such a situation. FT3 not tested so impossible to say.

A common mistake made by Doctors.

You do not have to bow to his suggestion if you are feeling well.

Loopyloo243 profile image
Loopyloo243 in reply toMarz

Many thanks for your quick reply, I had a private test done on 17th September 2020 and the T3 came back 4.1 range (3.1-6.8) it's impossible these days to get NHS test done for T3

Marz profile image
Marz in reply toLoopyloo243

So T3 is not over range - so no need to reduce your dose !

Loopyloo243 profile image
Loopyloo243 in reply toMarz

Many thanks let's hope I can stay on my dose

Marz profile image
Marz in reply toLoopyloo243

You can make that decision yourself. Many people here on the forum self-treat ...some inform their GP - others do not. I have informed my GP and I help her understand the test results !

SlowDragon profile image
SlowDragonAdministrator

Refuse to reduce dose unless Ft3 is over range

Your Private test shows very low Ft3

Ft4 is only 55% through range

Ft3 a very low 33% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

What vitamin supplements are you currently taking

Important to regularly retest vitamin D, folate, ferritin and B12

Good vitamin levels helps improve conversion of Ft4 to Ft3

As you have Hashimoto’s are you on strictly gluten free diet

Loopyloo243 profile image
Loopyloo243 in reply toSlowDragon

Thanks for your reply, all my bloods are well within range now especially my Vit.d as that's come up fron 51 to 110, I'm taking a supplement for tha. I'm not on gluten free diet but am willing to give it a try, any suggestions for a good gluten free diet.

SlowDragon profile image
SlowDragonAdministrator in reply toLoopyloo243

What are your most recent results for folate, B12 and ferritin

Gluten free diet means absolutely no wheat, barley or rye grains

Get coeliac blood test BEFORE considering trial of gluten free diet.

Look at Coeliac UK for info and ideas

Thousands of gluten free ideas on line, magazines, cook books etc

Loopyloo243 profile image
Loopyloo243 in reply toSlowDragon

Thank you

tattybogle profile image
tattybogle

Hi Loopyloo, if you read my first reply to this post;

healthunlocked.com/thyroidu...

you'll find links to three old posts discussing the 'risks' of low TSH.

Hopefully there is stuff in there that will help when talking to GP.

You could try pointing out to GP that we often need slightly higher amounts of thyroid hormone in winter and less in summer... maybe you could use this to suggest that he leaves your current dose alone for now and adopts a wait and see policy for a few months till spring ?

If a reduction looks inevitable due to TSH of 0.01 (which IS very low, and will not be helping with T4 to T3 conversion, and does come with slightly higher 'risks' for bone and heart problems) then make sure it is the smallest reduction possible eg. they could prescribe alternate days of 125 and 100 to give dose of 112.5 mcg daily.

Or even just remove 50mcg in total across the whole week.

Say this is what you'd like to try because you know your Ft4 is well within range, so not overmedicated according to that measure, and you want to see if a very small reduction is enough to raise TSH to above 0.04 which gets rid of the 'risks'

A reduction of 12.5 was enough to raise my TSH from 0.04 to 0.09

If they insist that you are overmedicated you could ask them to prove it by doing an FT3 , and say you won't agree to a reduction unless they can show you are overmedicated.(NHS have done 5 FT3 tests on me over the years when TSH low and FT4 high, so i do believe they can if they really want to)

You could try asking for evidence of the risks they are concerned about in your case so you can be an equal partner in decisions about your health...... but they will probably just hide behind 'Guidelines Say... We have to follow NHS guidelines' but you should point out that part of the guidelines says that they don't HAVE to follow the guidelines .... they are GUIDElines not rules and should not override the individual patients needs.

Hope you find some of this helpful and don't get brain ache thinking about it all. Wouldn't it be nice if they'd just leave us alone when we are doing well enough and go and bother some people who actually want to see them.

Loopyloo243 profile image
Loopyloo243

Thank you for very informative reply, looks like I've got some reading to do before my doctors call tomorrow a.m.

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