Advice on TSH levels please

[Dlm3557]

I’m a regular reader of this forum and have had some excellent advice in the past. I’m hypo after radioiodine treatment for Graves in 2017 and take 75 mg levothyroxine. I’m in a good place and feel well but was due for my annual thyroid check with the GP. As we know they only do TSH and my result was 0.34 mIU/l (0.35-5.5).

Last year at the GP the result was 0.39mIU/l (0.35-5.5)

My old GP was happy with last years result but this year the new GP thinks it’s a bit low and is considering reducing my Levo to 50mg! He wants me to have a blood test and if the TSH level is lower than 0.34 he is going to reduce my prescription to 50mg. As I feel well I don’t want to change my dose.

I’ve just ordered a kit from Medicheck myself to check my own levels including TSH, T3 and free thyroxine. A previous Medicheck TSH result last year was 0.595mIU/l (0.27-4.2 mIU/l)

So my question is if he is insisting I reduce my dose is there anything I can do? As long as I feel well I want to leave things alone and not start messing about with my dose. I don’t think 0.34 mIU/l is low based on this forum.

Any advice from the experts would be great!

Many thanks in advance

[SeasideSusie Remembering]

Dlm3557

So my question is if he is insisting I reduce my dose is there anything I can do?

See what your Medichecks results come back like. If your FT3 is within range you are not overmedicated and tell your GP you wont agree to a reduction in your Levo based on your Medichecks results. If he wont accept them then invite him to do his own FT4/FT3 and refuse to reduce your dose until those are done.

You can use the following information to support your stance:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

I've had this conversation ad nauseum with my GP who is TSH obsessed and refuses to consider the actual thyroid hormone levels. I now avoid my GP and see the Advanced Nurse Practioner who is happy to see my TSH suppressed as long as my FT4/FT3 are in range.

[Dlm3557 in reply to SeasideSusie]

Brilliant and helpful response as ever!

Many thanks indeed for this.

[Dlm3557 in reply to SeasideSusie]

Hi there

Just wanted to update you. I had another blood test at the doctors surgery and saw another GP today for the results which I knew from phoning in advance were TSH 0.36 mlU/L and T4 18.8 pmol/L

I saw yet another GP and I took the Dr Toft article with me as you suggested.

She wrote the details of his article on my notes and said I could stay on my current meds albeit to have another test in 6 months!

Thank you so much for your help AGAIN!

Interestingly I did my own Medichecks test on the same day as the GP test. In fact the tests were within an hour of each other.

The Medichecks results were TSH 0.557 mlU/L, T4 20.3pmol/L and T3 4.44pmol/L

I believe the Medicheck results!

As long as I feel well I intend to stay on my current meds.

[Pascha1]

Hi, Its only just under range 1 point under range thats nothing ,

Drs should know the range is a guide and some may fall outside that range , they say about 5% of population will be under or over the range, remind him he would of been taught the 5% being outside range on blood tests at med school also that TSH is actually a test of the pituitary not the thyroid function and that T4 is a reserve of thyroid hormone and T3 is the active hormone.

I would refuse to lower meds it if you are feeling good, Insist you see an Endocrinologist before the GP starts messing around with your health, if you start messing around with meds you may never get that normal back

This sounds like another case of Ignorant GP strikes again !

Im sorry GPs just do not know much on thyroid and why change meds if you feel well.

Insist he checks your TSH, T4 and T3 to check what they are doing as by reducing your meds he could make you quite unwell

TSH isnt what the thyroid is doing,, if your T4 and T3 were over range it maybe different insist he does these..

I would make a note of the results of TSH T4 T3 that you feel good at (now) and always aim to keep that for future references

[Pascha1 in reply to Pascha1]

I had sub thyroidectomy for hyperthyroid, My TSH was 0.004 and no dr or endo has been one but concerned about it, as when on T4 My T3 and T4 were within range so this maybe why they are unconcerned about my TSH so all 3 are needed to see the full picture

[Dlm3557 in reply to Pascha1]

Ye agreed and good point! that’s why Medicheck is a godsend!!

[Dlm3557 in reply to Pascha1]

Thank you so much for this. I will definitely do what you suggest. Let’s hope my Medicheck results are OK!

[Pascha1 in reply to Dlm3557]

They dont take long to come back so good luck but sounds like they will be fine if you feel good

Drs should learn a bit more on thyroid they make many ill with their ignorance x

[Dlm3557 in reply to Pascha1]

Yes fully agree to that! Thank goodness for this forum!!

[pennyannie]

Hello Dim

I'm with Graves Disease post RAI thyroid ablation and went through this same situation with my doctor, ultimately becoming very unwell by having my Levothyroxine reduced, just so that it would sit inside the range.

Thanks to this amazing site I 've learnt that the TSH was introduced as a diagnostic tool to diagnosis hypothyroidism. Once on thyroid hormone replacement it is necessary to test T3 and T4 alongside the TSH and it is where the T3 is in it's range that should be used to adjust medication, if necessary.

If you feel well where you are, please do not agree to any adjustments in your medication

With Graves Disease, especially after RAI and thyroid ablation our TSH is an unreliable marker, our feedback loop is broken, and it is necessary that T3 and T4 are measured. Providing your T3 is in range, it's also ok if T4 is slightly over the range.

[Dlm3557]

How interesting! I am in exactly the same position as you! I’m keen not to change anything to be honest and some of the feedback on here is giving me the ammunition!

Thank you so much.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

If not had vitamin levels tested, suggest you return just Thyroid blood test and order one that includes vitamin testing.

Or insist GP tests vitamin D, folate, B12 and ferritin

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Dlm3557]

I doubt whether my GP would be prepared to do that level of tests! I have struggled previously to get them to agree to do T3! If I want that whole range I do it privately through Medichecks. I’ve done the full range in the past but not recently. For now I’m just doing TSH, T3 and free thyroxine to hopefully prove to this GP that I don’t need to reduce my current dose level.

Yes I do follow your advice in relation to when I take my last tablet and when I take blood.

Really appreciate your input. Thank you.

[Pascha1 in reply to Dlm3557]

My GP tests them all on NHS, so worth asking before forking out money

[Dlm3557]

Really? You’ve got a good GP then!! I will ask this new one but I’ve ordered a private test for now.

Thanks for the info tho!

[Gingernut44]

It's not always down to the GP - even when they ask for T3 to be tested, the Lab won't do it

[Dlm3557 in reply to Gingernut44]

Yes so I understand. Don’t know why it’s so hard!!!

[pennyannie]

When I requested T3 and T4 blood tests I was told that I had to pay for them.

I agreed to pay the NHS laboratory direct and was charged just over £34 for the two.

My result showed my T3 at just 25 % through the range with a T4 at 80%.

My doctor thought I was very lucky to have any T3 at all and couldn't, didn't, wouldn't see a conversion problem, and as my TSH was suppressed the NHS endo refused me a trial of T3.

Thanks to this amazing site, I've turned things around for myself.

It's better value to use a private company for a full thyroid profile including the vitamins and minerals.

I have read that it costs about £1 to process a blood test, through the NHS laboratories.

[Dlm3557]

Yes I’m sure that’s true! Thanks for your views. So valuable!