Feeling dreadful

[stonecircle]

I just got recent blood test and after a 2year reduction regime of thyroxine my levels are finally in the "normal" range - before they were T4 25, T3 4.2 and TSH 0.05. My T4 is now 17.6, my T3 is now 0.36 and my TSH is 4 after being 0.05 for years - why then do I feel absolutely dreadful? I am freezing cold and mentally very slow. with high anxiety and heart racing. Do you think my T3 is too low? I am on 550 mcs per week of thyroxine and I want to up my dose to 600 mcs per week. All my Dr says is that I am within the normal range now so cannot explain why I feel so ill. Any advice would be welcomed. Thank you.

[Hidden]

We need the ranges for your results to be meaningfully interpreted.

Could you double check your T3 result though? 0.36??

[stonecircle in reply to Hidden]

Thank you for your reply and yes my GP sent me the wrong results - after requesting a printout I saw that my levels are T4 17.6, T3 4 and TSH 0.36 - the T4 levels are the lowest they have been since my records started with this GP which was in 2006 - usually they are around 19 which I have felt well on before. Do you think that the drop down to 17.6 would account for this dreadful anxiety I am experiencing. My body is ridicuously sensitive and the slightest variation can have a big impact. I saw my GP yesterday and she wants me to up my thyroxine dose from 550mcs per week to 600 mcs per week - am praying that in a few weeks I will be feeling better. Many thanks. Ronnie

[SeasideSusie Remembering]

stonecircle

We need reference ranges that come with your results to be able to interpret them.

Is your FT3 really 0.36?

Your symptoms suggest undermedication.

Your new TSH suggests undermedication and if your FT4 range has 22 as the upper limit then I expect your result is somewhere around the mid-range mark which again suggests undermedication.

Your TSH should be no higher than 2 and it can be much lower so here is some information to share with your GP about thyroid function test results:

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw(Not working as expected?)

You can obtain a copy of the article which contains this quote from ThyroidUK

Email : [e-mail]

and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.

[stonecircle in reply to SeasideSusie]

Thank you for your reply - my GP gave me the wrong results - I requested a printout and it read that my T4 is 17.6, my T3 is 4 and my TSH is 0.36. When my T4 is at 19 I have felt well in the past but I think that the reduction in my thyroxine has been too much for me, even though I am in the "normal range". I am currently on 550mcs per week and after seeing my GP yesterday I am increasing my thyroxine up to 600mcs per week. My body is ridicuously sensitive and the slightest variation can have such a big impact on my health. I think you are correct in that I am undermedicated and that would account for the anxiety and depression that I am now experiencing - I really hope that in a few weeks I will be out of this high anxiety. Many thanks. Ronnie.

[Aurealis]

You can either adjust until you feel well, or adjust until you have pretty test results. A new doctor might help… one that treats the patient, not the blood test….

[Britpol in reply to Aurealis]

Excellent suggestion! Endocrinologists clearly can’t cope with the fact that the thyroid releases hormones all the time and its activity changes all the time. It is a dynamic system that will produce different readings on different days and even on a given day at different times of the day! Working with ranges gives some indication what maybe going wrong, but paying attention to how the patient feels is most important. Very few endocrinologists understand that.

[Aurealis in reply to Britpol]

Years ago they used to allow blood tests three weeks after a dose change. Now it’s more like 3 months. You’re right it is a dynamic system - in the past my ft3 and or fT4 went on the opposite direction to the change in dose e.g. an increase in dose caused a reduction in fT3 and fT4 while TSH remained suppressed - in me it always is - and no-one ever considered if different tests were needed? Why would that be then? But more memorable of all is the terrible months I allowed an endo to reduce my dose to ‘stimulate TSH’. It never did become stimulated but eventually he became worried at how ill I’d become - it’s a sure sign I’m poorly when I no longer argue back at a dose reduction. I still have some health problems that I can trace back to that time, so have no qualms about advising others to be confident and trust their own judgement, it just isn’t worth sacrificing your health to “do as you’re told”, better to be a ‘stroppy patient’.

[stonecircle in reply to Aurealis]

Thank you Aurealis your article has really helped me as this has also been my experience. My TSH had been 0.01 for years and my T4 around 19 and T3 around 4 and I felt really well - in 2020 I suffered a Hashimotos flare up and my T4 went up to 25 and I was told by my GP and then an Endo Consultant that I had been severely over medicated for years and that I needed to reduce my thyroxine as my TSH was suppressed. My instinct was to leave things be but I unfortunately didn't follow it and I agreed to reduce as requested - 2 years on I feel absolutely dreadful. My T4 levels have never been this low since my records began with my GP which was in 2006. I am now upping my thyroxine from 550 mcs per week to 600mcs per week and pray that in a few weeks I will be feeling better than I am at this moment. I have never known anxiety like it. Thank you so much. Ronnie.

[Aurealis in reply to stonecircle]

We are all different, but I would find a 50mcg increase too much all at once as I am very sensitive to hormone when undertreated. I’d try to increase up gradually over a few days feeling my way as I went along. Good luck

[tattybogle in reply to Aurealis]

I think stonecircle means to increase by 50mcg a week .. not 50mcg /day

same thing happened to me ... long story , but i'd been ok /stable on 125mcg , FT4 went over range 20 (7-14) , but i was feeling ok . TSH had always been low .. but GP reduced to 112.5 ... fT4 went up further . (GP thought i was taking more ... i wasn't) . then GP reduced again to 100mcg , i didn't want to as the previous reduction had given me a really tough couple of months and i was only just starting to get my act together again....but eventually i agreed as he scared me about having a stroke, and said i'd die ... next reduction to 100mcg really messed me up .... i insisted on going back up regardless of what my fT4 was , i said i understood 'the risks', and he reluctantly agreed as i was very unwell indeed on 100mcg , not to mention the whole debarkle meant i had to pack in my work, the house ended up a shambles, the garden dying ., and the bicycle retired to being coat rack for about a year ..

before all this started i was doing pretty good on 125mcg. i'm ok again now .. decided to stick at 112.5mcg as it feels ok.

My fT4 eventually came down by itself despite putting the dose back up .

[SlowDragon Administrator]

A TSH of 4 is far from “normal “

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

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....

Many, many members have TSH well below range when adequately treated

Most important results are ALWAYS Ft3 followed by Ft4

If currently vastly under medicated (as it appears you are ) likely to have low vitamin levels too

ESSENTIAL to test vitamin D, folate, ferritin and B12

Many thyroid patients need to supplement vitamin D and vitamin B complex continuously to maintain optimal vitamin levels

[stonecircle in reply to SlowDragon]

Thank you Slow Dragon - my GP read me the wrong results - when I asked for a printout I saw that my levels are T4 17.6, T3 4 and TSH 0.36. Even though they are in the "normal range" I feel absolutely dreadful. My T4 has never been this low since my records began with this GP in 2006. I saw her yesterday and she said to up my thyroxine from 550mcs per week to 600mcs per week. I wish I had never agreed to reduce my dose in the first place. In Dec 2020 I was obviously having a Hashimotos flare up and my T4 was at 25 so it was suggested that as I had been severely over medicated for years according to them (based on the fact that my TSH had been 0.01 for years and despite the fact that I had been well for years) and that I had to reduce my thyroxine. I regret not trusting my instinct and holding on till the flare up had passed. I feel now I am undermedicated and hope that I will be feeling better in a few weeks. Many thanks. Ronnie

[Regenallotment]

I find it helpful to refer to the range as the ‘reference interval’ and remind the GP that if you test people with normal thyroids they’ll mostly have. TSH around 1. “Normal does not equal symptom free” and the NICE guidelines say to titrate up the dose until the patient feels well.

Your GP has caused you to be even more hypothyroid which in my book is negligent, and he/she needs to do some professional development. It may be that you were overmedicated previously but they’ve gone too far and for too long. It will take some time to get those levels optimal for you again.

[SlowDragon Administrator]

A TSH of 0.05 did not suggest over replacement

You haven’t added ranges on Ft4 and Ft3 …..but Ft3 looks well within most ranges

T4 therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

Thousands of thyroid patients have below range or suppressed TSH when adequately treated…..most important results are always Ft3 followed by Ft4

Ideally we wouldn’t have suppressed TSH…..but in reality….if Ft3 and Ft4 are where you need them to function well and Ft3 not over range ….TSH is irrelevant

Posts that mention suppressed TSH

healthunlocked.com/search/p...

[SlowDragon Administrator]

How much levothyroxine were you taking before dose was reduced

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

If not, work out which brand levothyroxine suits you best and request GP specify that brand on all future prescriptions

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

ESSENTIAL to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Suggest you insist these tested via GP as they inappropriately reduced dose levothyroxine

many many people end up with very low TSH when adequately treated.