Update...Here we go again reduction of levothyrixine following blood tests

[Seabird4]

I was a wee bit surprised at the response from Endocrinolgy re my GP query on my test results. I think the GP was too. They have indicated that as I have had a suppressed TSH for so many years then my levothyroxine should only be reduced very slowly. I'm to reduce by taking 175mcg 6 days per week & 150mcg on the other day. This regime for 3-4 months then re-assess before looking to reducing again to 175mcg for 5 days and 150 mcg for 2 days. Thus does seem a more gentle way to reduce rather than being reduced to 150mcg daily. I did mention thst my T3 is not Iver range. They insisted I was made aware that a suppressed TSH causes osteoporosis & atrial fibrillation. Any thoughts are welcome.

[Jaydee1507 Administrator]

They are only looking at your TSH which for some people does have to be low or even suppressed for them to be well. Being well is something they never take into consideration.

Your previous results when you reduced:

Range TSH T4 T3

0.55-4.7 10-25 4-7

Sep 21 0.01 23.3 5.3

Dec 21 0.01 18.7 4.8

Dec 22 0.03 17.00 4.4

You haven't given ranges butour FT3 looks generally low and you said you didn;t feel well. Reducing slowly isn;t going to trick your body about feeling good about the lowered dose.

You can refuse and take responsibility for the suppressed TSH yourself. See Nice guidelines.

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. "

[Seabird4 in reply to Jaydee1507]

Thank you for your thoughts and info. I've altered the range chart so it's easier to read.

TSH T4 T3

Range 0.55-4.7 10-25 4-7

Sep 21 0.01 23.3 5.3

Dec 21 0.01 18.7 4.8

Dec 22 0.03 17.00 4.4

I will look to discuss the possible introduction of T3 when reviewed but that will supress my TSH too I believe so we shall see. I can always say I've tried this small reduction.

[Jazzw]

Arrgggh!

a suppressed TSH causes osteoporosis & atrial fibrillation

But it doesn’t, does it? Not in and of itself. It’s raised thyroid hormones that can lead to that (as in elevated T4 and T3) not the TSH itself.

The TSH isn’t even a thyroid hormone, it just responds to the levels of thyroid hormone in your blood. Sounds like there might be a new endo in town who doesn’t know a lot about thyroid issues. Probably a diabetes specialist.

Last time this happened you were able to get your doctor to reinstate your levo dosage. Do you think they might do that again?

Why oh why do they think it’s ok to make you ill so that the blood tests “look right”?

[Alanna012 in reply to Jazzw]

I never understand this. During my basic undergrad psychology degree, we had a module on Thyroid, and TSH was classified as a pituitary hormone. We were clearly taught that T4 must be converted into T3. The vast majority of us were not going to be doctors, although I guess you could say some might have wanted to study further to go into clinical psychology. What then are GPs and Endos being taught?

I simply don't believe they're not being taught this. Yet I keep encountering this. Along with a bizarre idea that T4 is thyroid function (tick) and T3....is the metabolism (tick) not attached to thyroid function, so T3 is inconsequential even when a person is clearly suffering a run down metabolism which is one of the symptoms to look out for when not supplementing thyroid hormone/not enough/not converting🤷🏿‍♀️

In fact I have had it stated that T3 doesn't matter as long as T4 is in range.

I really don't understand. It's a mystery. Even the NICE guidelines seem not to be known.

[DippyDame in reply to Alanna012]

It is ( almost) a mystery as to why this nonsense has been perpetuated for years, to the detriment of thyroid patients.

Don't the powers that be understand that T3 is the active thyroid hormone....the one that does the work!!!

If cellular T3 is low patients become very ill, etc etc..

It is madness to ignore this!!

I doubt I'd be here ranting regularly had I relied on TSH, FT4 testing! I'd most likely be dead as a result of low cellular T3....but that's another tale!

However it is much easier to test TSH a pituitary hormone and more or less ignore the thyroid hormones.

Dosing by TSH, an unreliable marker, is a lazy way of medicating thyroid patients.

" diogenes " explains more here...

thyroiduk.org/further-readi...

Since c1975 they have gone down this route....

How many red faces would there be were they to admit that they had got it wrong....and how many thyroid patients would have suffered much less were they to admit this!

I'm afraid the red mist begins to descend when I read yet another post about this debacle.

I'm not a medic just another thyroid patient who has been let down by the system

I'm convinced medics are terrified of T3.

The unverified scaremongering that pervades medical circles has left them fearing dire health for, or the death of, patients.... and concern that their registration would be at risk.

I need a supraphysiological dose of T3-only which I self medicate. My GP initially thought I was killing myself ( usual,reasons)....she now understands why I took the decision and leaves me to it.

Yet...no such tales of woe seem to emanate from scientific circles!

It looks as if medics follow opinion....not fact!

The problem remains.

Is there any hope of change any time soon?

I doubt it

Rant over!!

Seabird4 you may find the following links helpful

(If FT3 is within range it is highly unlikely that you are overmedicated....but I guess you know this)

thyroidpatients.ca/2021/07/...

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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

-----------

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

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

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[Seabird4 in reply to DippyDame]

Although the Endo made reference to the increased risk of osteoporosis fractures etc. In discussion with the GP I queried why I was taking calcium & vid D tablets with no review. Gp conducted a risk assessment checklist and concluded I didn't require them (now taken off my prescrition) & that a dexa scan could not be done as I didn't meet the criteria...confusing or what. I've to buy over the counter vit D.

Do you source your in T3?

[Seabird4 in reply to Jazzw]

Thank you for your reply which I read with interest. My understanding was that if I am in range then I'm not over medicated? I always request T3 to be tested too which they do. The GP previously withdrew 25mcg daily so my dose was reduced to 150 mcg but I requested this to be reviewed and the above is the response from Endo. I am preparing info for the review in 3/4 months time so thank you I'll add this to my notes.

[Jazzw in reply to Seabird4]

If your FT4 and FT3 are in range you won’t be over-medicated. The TSH level isn’t a reliable measurement for dosing purposes.

[Seabird4 in reply to Jazzw]

Yes indeed thank you and I do mention this to the GP but I will raise it again at the review. I just keep plugging away. I felt not too bad before but this carry on is upsetting my balance. I've been at this for over 30 years now & I've gained knowledge & support from this forum for sure.

[tattybogle]

Hi Seabird4

since your last TSH was 0.03 you may find this useful:

( or rather , if you can get it up to the dizzying height of 0.04 ~ then you may find it useful )

This paper forms part of the evidence base for the current NHS thyroid treatment guidelines , it was referenced as evidence to back up their concerns about "low TSH /overtreatment with levo/ risk to bones and heart" ( so they cannot say it is 'not good enough evidence' if you put it under their nose).

However when read carefully ,it actually says that 'low but not supressed' TSH 0.04 - 0.4 on levo had no greater risks than TSH 'in range' does . The risks did increase sharply when TSH was below 0.04 ...

you can use this paper as a very strong argument that TSH 'itself' is not a increased risk for Fractures / Dysrhythmias (Atrial Fibrilation) / Cardiovascular Disease .... as long as your TSH is 0.04 or above .

It was a large, long term study of 17,000 real patients on levo in Scotland.

academic.oup.com/jcem/artic... Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy

Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, Graham P. Leese

The Journal of Clinical Endocrinology & Metabolism, Volume 95, Issue 1, 1 January 2010,

"Abstract

Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some patients request higher doses due to adverse symptoms.

Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.

Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.

Setting: A population-based study of all patients in Tayside, Scotland, was performed.

Patients: All patients taking T4 replacement therapy (n = 17,684) were included.

Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter).

Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99–1.123), 1.13 (0.88–1.47), and 1.13 (0.92–1.39), respectively].

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This post deals specifically with the alleged risk to bones.. it links to a recent long term study of patients whose TSH was kept deliberately supressed with levo, long term ( to prevent recurrence of thyroid cancer) ..... it found no significant increase in bone loss with a long term supressed TSH as long as T4 was kept in range.

healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

For a list of links to other useful discussions on the subject of low TSH/ Risk vs Quality of life ,, please see my reply to this post ( 3rd reply down)

healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low

[DippyDame in reply to tattybogle]

It strikes me that by focussing on TSH they are putting the cart before the horse!!

TSH tells it's story... but that is created by the reflection of the levels of FT4 and FT3

They are the important markers....particularly FT3.

As the active thyroid hormone much can be extrapolated from it's level....along with that of FT4

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration.

Turn that around and high or suppressed TSH is the reflection of low or high hormone levels

Why not just test the individual hormones and cut out the 'guessing game" as to which hormones in the serum are causing either the high or suppressed TSH?

Surely the symptoms arise from the hormone level....not from the TSH per se which is invariably an unreliable marker.

If TSH were a reliable marker ( beyond it's original function of identifying hypothyroidism) then why do so many patients who are medicated by TSH continue to struggle?

They are not being medicated with the correct hormone ....the individual hormones are sidelined in favour of TSH which only reflects combined FT4 and FT3 levels!

Granted, we are all different but surely using individual Free levels alongside clinical evaluation is more accurate that a ( possibly) fluctuating TSH level.

The powers that be appear to need to see a neat set of results which fit into their neat, sets of categories. Or if you like some of us are "square pegs" that can't be fitted into neat round holes. When the square peg brigade arrive the medics struggle!

As a square peg I've been there.....but I'm only an ill fitting square peg because nobody has had the nous to understand that I need a square hole, not a round hole.

We keep trotting out the mantra that, " we are all different" which is true........but how much effort has gone into ensuring that the low, square cohort, have a place to go and to recover.

Surely their symptoms are the result of wrong medication which attempts to fit then into that damned round hole ....when, in fact, they are square!

And, not the result of an unreliable TSH reading on a screen.

In days if yore they used their heads....

Change required....because the horse is falling over the cart that it's been forced to follow!!

Rant over!!

[tattybogle in reply to DippyDame]

agree DippyD its focus is entirely ass backwards/cart before horse... as usual .

I don't say it's good study well done .., or even shows the truth ,....The sole reason i use it so often is as a very useful tool to "hoist them by their own petard "

[Seabird4 in reply to tattybogle]

Thank you so much this looks like a comprehensive study and also that it's in Scotland too. I'll see if my TSH raises with this small adjustment and take it from there. I'll read & print all the evidence to back my case too. It can be difficult to unpick the overlapping of any symptoms etc. as I also have Pernicious Anaemia but I try to keep well with all the invaluable information I have access to on this forum and I'm very thankful for that...thank you 😊

[SlowDragon Administrator]

Results by % show your Ft4 and Ft3 are too low

Dec 2022

FT4: 17 pmol/l (Range 10 - 25) 46.67%

FT3: 4.4 pmol/l (Range 4 - 7) 13.33%

Dec 2021

FT4: 18.7 pmol/l (Range 10 - 25) 58.00%

FT3: 4.8 pmol/l (Range 4 - 7) 26.67%

Sept 2021

FT4: 23.3 pmol/l (Range 10 - 25) 88.67%

FT3: 5.3 pmol/l (Range 4 - 7) 43.33%

Most people when adequately treated will have Ft4 and Ft3 at least 50-60% through range and often need both at approximately 70% through range

Sept 2021 results show, like many thyroid patients, you are very poor converter of Ft4 to Ft3

Dec 2022

Your TSH clearly does NOT respond to the low levels of thyroid hormones

Presumably you have Hashimoto’s as you also have pernicious anaemia

What are your most recent vitamin D, folate, ferritin results

What vitamin supplements are you currently taking

Low vitamin levels tend to lower TSH

We need optimal vitamin levels for good conversion of Ft4 to Ft3

Also are you on strictly gluten free or dairy free diet

[Seabird4]

Thank you for your analysis of my results. I appreciate you taking the time to do it for me. Seeing them all together with percentages gives a better picture. Looks like I've not reaching optimal at all. Giving consideration to the replies I have received I was hoping my TSH would rise a little with a small reduction to take me to a low but not suppressed TSH. Are you suggesting that may not work because of my recent results? I don't have my recent figures for my vitamins D etc. as we have new GPs with different systems for requesting results. I will look to getting a copy. I have my B12 8 weekly (was 6 weekly but new GP changed to meet guidlines). Previously prescribed Calcium &VitD tabs but now only Vit D. 25ug daily.

Not on any dietary restrictions at present.

[tattybogle]

When TSH has been supressed / very low for *a while , it can take *a long time ( *how long is piece of string ?) to recover. This can be due to a thing called Hysteresis (sort of 'lags behind', not related at all to hysterical).

You results between Sept 2021 and Dec 2021 may not have been long enough for TSH to 'wake up' in response to a lower dose . However it has since risen to 0.03 .. so that does indicate it MAY rise further in response to slightly lower dose . So don't assume it definitely won't..it might .

[Seabird4]

Thanks tattybogle I hope it does then I can go back and have further discussions re my prescription at the review. That explains why they have left3/4 months for review. Love the name by the way hadn't heard that for a wee while 😀

[tattybogle in reply to Seabird4]

apparently i got called it by 'a scottish uncle' when i was a few week old ( my grandmother had said "whatever are we going to do with that child's hair ? she looks like a coconut" )

I'm a sassenach so i never found out what it meant till i was abut 30 ...poking around in the library of a country pile in Galloway at a party ....

"Hairy Potato Goblin" ~ charming .

So i'll happily settle for 'scarecrow'

[Seabird4]

A fine story there...made me smile thank you for sharing 😊