Need help with Suppressed TSH whilst on T4 and T3 meds

[Remy1]

I have been lucky to have been put on 125mcg of levo and 20mcg of Lio daily and am beginning to feel better in myself. Have had my latest bloods and my TSH is supressed and my T4 is a little down. I know they will try and reduce my meds due to the TSH and will not accept it is always compromised when taking T3. Has anyone got any articles that they could provide me with that I can take to the GP and prove my case. I was paying for a private endo but all he was worried about was TSH and I was throwing money away. Everything is a battle and when you don’t feel well only adds to the stress. Thanks in anticipation.

[SlowDragon Administrator]

Did you do test early morning, ideally just before 9am, last dose levothyroxine 24 hours before test

do you normally split the dose T3 as 3 smaller doses spread through the day

On day before test ALWAYS split T3 …..last 5mcg dose Approx 8-12 hours before test

What exactly are results and ranges?

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking?

If not under the care of an endocrinologist anymore your GP is likely to try to reduce levothyroxine dose

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

[Remy1 in reply to SlowDragon]

yes all meds stopped lunchtime day before and bloods taken at 8.15am in morning. T3 split into 2 doses.

Latest results T4 14.2 and TSH 0.01 no T3 tests

December results T3 5.01 T4 15.8 TSH 0.01

Folate etc just within range but GP said all others fine as within range even if low.

I have advised TSH very low when taking T3 but no one will listen.

Thank you

[SlowDragon Administrator in reply to Remy1]

last dose T3 should be between 8pm and midnight

Obviously essential to test TSH, Ft4 and Ft3 together

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/

Vitamin levels must be OPTIMAL…..not just within range

NHS only obligated to treat vitamin deficiency

You need to self supplement to maintain GOOD vitamin levels

What exactly were results?

What vitamin supplements are you currently taking

Retest vitamin levels at least annually

Monitor My Health also now 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/getting-a-dia...

[BB001 in reply to Remy1]

I don't understand how your GP can measure the effectiveness of your T3 medication if they don't measure fT3. Maybe they requested it but the lab didn't do it. To avoid this situation, my GP always requests 'fT3 + fT4, pt is on liothyronine'.

[DippyDame]

I suspect "they" are afraid to admit they have been wrong for decades!!

I suggest you make a brief list of all you wish to ask/ say to your GP....bullet points help.

That helped me focus during consultations

State your case clearly...

Then hand him copies of the following with relevant sections highlighted....but don't be surprised if GP rejects them!!

It's not easy when you feel unwell, but doing nothing and accepting the nonsense they spout is not going to help.

I need high dose T3-only to function and both my TSH and FT4 are on the floor....that's how the body works.

I'm OK though my GP initially thought I was killing myself...I self medicate and she now leaves me to it. It's a sad reflection on the NHS

We are all different..yet medics think we can all be treated the same way

The first author of the following link is TUK's excellent advisor, "diogenes "....they are all renowned in the field

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

And, this well referenced article by the excellent Dr Tania Smith

thyroidpatients.ca/2021/07/...

And if he starts ranting about the dangers of T3 use this...

pubmed.ncbi.nlm.nih.gov/269...

Liothyronine use in a 17 year observational population-based study - the tears study

We have to keep argueing against this nonsense ...with the science that dispels their unfounded opinions

Good luck!

[McPammy]

I got my suppressed TSH into range by slightly reducing my levo dose from 75mcg a day to 68mcg a day just a 10% reduction. I didn’t change anything with my 5mcg liothyronine twice a day 8hrs apart. It’s now always just about in range. I feel very energised and well. Best I’ve felt in years. If you can reduce your levo ever so slightly you might see your TSH not be so suppressed. My private and NHS Endos are very pleased and have no issues in prescribing T3 liothyronine.

[Remy1 in reply to McPammy]

Thank you - will try reducing slightly and hope it improves.

[Lovecake in reply to McPammy]

I feel like writing “lucky you”, but none of us with thyroid issues are lucky. When my FT4 level dropped to the bottom of the range and I felt v poorly, my TSH was still suppressed. I take just 12.5mcg of T3 split throughout the day. I think some of us have TSH blood results that just don’t move.

Maybe I was bad in a former life and being told off constantly for having a suppressed TSH is my punishment……..😬

[McPammy in reply to Lovecake]

definitely not lucky as you say as I went through hell trying to get diagnosed in 2018/19. After being sent down blind NHS alleys I went private only. By that time I’d lost my much loved job. I couldn’t sit up or walk. I was tested positive for DIO2 gene. My private only endocrinologist prescribed T3 trial combined with liquid levothyroxine which was a huge success for me. The dose he prescribed I’ve kept to with exception of 10% drop in levo. My NHS Endo threatened to stop prescribing T3 if my TSH went suppressed. Being terrified of that situation I did and do my utmost to keep it within range. I’ve managed to do it. I come on here to try and help others achieve that if possible so they have no issues with their prescriptions. I also believe that exercise uses up T3 and if I start to feel a bit over I go on a long brisk walk then I’m ok again.

[Lovecake in reply to McPammy]

I don’t get over medicated. Not on my doses. But TSH is suppressed.

Got a blood test in the morning. Then appt with endo 2 weeks. Don’t know if I’ll be disagreeing with them or not at this stage 😑

It’s all so tiring and stressful which we don’t need