Feeling fine but TSH is low: Hi I feel fine... - Thyroid UK

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Feeling fine but TSH is low

Mothebear profile image
34 Replies

Hi

I feel fine, active, in good spirit, sleep 7 hours. I take 100mg of Eltroxin (Levo) prescribed by consultant.

My results from Medicheck - following best practice for taking blood test (8am) no meds in previous 23 hours. I take zinc, selenium, vit B, vit D, vit K supplements.

Medicheck results tested twice 8 weeks apart:

FT4 21.3 range 12 - 22

TSH 0.05 range 0.27 - 42

Free T3 4.3 range 3.1 -6.8

Vit B12 active 112 range 25-165

Ferritin 132 range 13-150

Folate >20 range >2.9

Vit D 100 range 50-200

I am having NHS test (not had for over 18 months cos of Covid). I look over medicated but feel great.

Am I at risk of my dosage being reduced? And if so will I feel less good?

Any comments would be helpful. Thank you - a great site!

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Mothebear
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34 Replies
fuchsia-pink profile image
fuchsia-pink

If you feel good, then please don't have your meds reduced! Technically you are ONLY over-medicated if free T3 goes over-range (and yours is quite modest at 32.4% through range, even though free T4 is near the top of range) - so you're not a great converter and need a high free T4 to get an acceptable to you level of free T3.

The GP may freak about the low TH, becuase they don't understand that it's not a thyroid hormone, and seem not to appreciate the HUGE difference between low TSH + waaay over-range free T3 + no meds and low TH + in range (and actually quite low) free T3 + being on thyroid meds.

If they start to lecture you, ask how you can reduce your hormone levels safely without compromising your free T3 result. The only reason to reduce your current level of levo would be because you were seeing an endo who was trialling you on T3 meds [at which point your TSH would definitely not go any higher anyway]

Be strong :) x

pennyannie profile image
pennyannie

Hello Mothebear :

You do not look over medicated, and are not over medicated as your T3 is at 4.3 and at just around 32% through the range.

But if your NHS blood test is just a TSH which generally speaking is all we get at the yearly thyroid function test the computer dogma will suggest that you are at risk of " hyper " and even if the NHS ran a T4 your doctor may not like your result so close to the top of the range.

You may feel worse if your dose is reduced - do you have any previous T3 and T4 results ?

The TSH was originally introduced as a diagnostic tool to help identify a patient with hypothyroidism and it was never intended to be used once the patient was on any form of thyroid hormone replacement as then we should be dosed and monitored on our T3 and T4 levels and the aim to have these two vtal thyroid hormones balanced in the ranges, at around a 1 / 4 ratio of T3 to T4.

The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when they come in at around 4 or under:

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at 4.95 : so your conversion is going out from the centre and a little compromised.

Do you have your inflammation reading there as this can compromise T4 into T3 conversion as can depression, dieting, any physiological stress ( emotional or physical ) and ageing ?

Your ferritin looks a bit high, which can be because of inflammation, otherwise your folate, B12 and vitamin D all look good.

tattybogle profile image
tattybogle

Yes ,

you may well come under pressure to reduce dose .

The usual reason given is 'risk to heart and bones' if TSH is low.

it's worth doing some reading so you understand the issue's before you get put in that position .

A VERY SMALL reduction in dose may, or may not, leave you feeling less good ... there is only one way to find out , and that is to agree to try it for a few months...

(and i do mean 'very small' ... not reducing to 75mcg /day which is quite a big reduction and would almost certainly make you feel worse.. could maybe try 75mcg/100mcg alternate days or 5 days 100 / 2 days 75mcg if you wanted to .. )

...... but personally i wouldn't change anything if you currently feel well. You can't always get back to feeling so good once you've messed with a dose , even if you later put it back to where it was .

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

I did a lot of reading about low TSH /risks/ on Levo, as mine had been 0.05ish for over a decade.

I found a large, long term study of patients on Levothyroxine, showing that 'risks' for TSH 0.04 - 0.4 were actually no greater than the risks for TSH 'in range' (0.4 -4)

The risks did increase for TSH below 0.04 , but most of them were still less than risks for TSH over 4 ... (and recent NHS guidelines say they don't even need to treat hypothyroidism until TSH is above 10 .. so they are obviously not very worried about the risks of TSH over 4 )

academic.oup.com/jcem/artic...

The link to that study is duplicated in my replies to the following posts, but i'll include links to them all ,as they all have some interesting/reassuring discussion on the subject of low TSH/Risk.

healthunlocked.com/thyroidu... tsh-and-bone-density?

healthunlocked.com/thyroidu... suppressed-tsh-dangerous-wheres-the-evidence?

healthunlocked.com/thyroidu... tsh-and-the-more-mature

healthunlocked.com/thyroidu... risks-of-suppressed-tsh-analysis?

healthunlocked.com/thyroidu... dangers-of-suppressed-tsh?

healthunlocked.com/thyroidu.... Suppressed/low TSH -Osteoporosis and Atrial Fibrillation evidence.

healthunlocked.com/thyroidu... armor-thyroid-and-bone-damage

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

healthunlocked.com/thyroidu... low-tsh-not-related-to-bone-density-loss-new-paper

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

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

"They term 'subclinical hyperthyroidism' low TSH but normal FT4. What it shows is that long term there is no effect on bone density in the large majority of patients. So it shows that doctors need not get worried about OP effects over a longterm TSH- supressive dose of T4. A minority may be affected but it is individual not widespread. I don't think FT3 was included. This finding can obviously apply to patients on T4 or T4/T3 who have low or no TSH, with normal FT4/3"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~.

see first reply by diogenes to this post healthunlocked.com/thyroidu...

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

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

(That’s Ft3 at 58% minimum through range) * Edit see my see reply below for video confirming this applies to fT3 .

You can obtain a copy of this article from Thyroid UK email print it and highlight question 6 to show your doctor

.

please email Dionne at

tukadmin@thyroiduk.org

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

There ARE good reasons to try to keep TSH a little higher (closer to 1 than 0) if you can manage to do so on a dose that still allows you to feel well.

.... TSH drives the deiodinase enzymes ,, and these are responsible for how efficiently you convert the inactive T4, to active T3 (that works in your cells)

So , having lower TSH means you're probably getting less T3 out of your T4 than you might get if TSH was a little higher.

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

it's just possible there may be some concerns about having high /over rage fT4, but it's not at all clear yet , it's very recent research... some replies in this post discuss the issue & provide links . healthunlocked.com/thyroidu... over-range-t4?

Latest ... healthunlocked.com/thyroidu... levothyroxine-monotherapy-and-cancer

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

If your GP says , i have to reduce your dose , because i have to follow the NHS guidelines, then remind them of this bit , it's the first thing said to GP's ,on the first page of the latest NHS (N.I.C.E) guidelines for thyroid disease and management. nice.org.uk/guidance/ng145

" Guideline development process

How we develop NICE guidelines

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. "

SmallBlueThing profile image
SmallBlueThing in reply to tattybogle

Please note that Dr Toft is referring to the total T3 (as evidenced by the units and reference range).

tattybogle profile image
tattybogle in reply to SmallBlueThing

*He confirmed, during a talk he gave to The Thyroid Trust, 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

(link to the video is in this post . see reply by SeasideSusie) healthunlocked.com/thyroidu...

( feeling a bit thick this morning and have forgotten how to post video link directly, sorry :) )

Joyya profile image
Joyya in reply to tattybogle

11 months before I needed it, but right on time!! Thank you!

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand levothyroxine at each prescription

Do you take vitamin B complex or B12

Results show you are poor converter of Ft4 to Ft3

Ft4 is 93% through range

Ft3 is only 33% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Do you have autoimmune thyroid disease?

Diagnosed by high thyroid antibodies

Mothebear profile image
Mothebear in reply to SlowDragon

Yes to all your questions. On blood test in June I was taking B12, it came back as too high, but was not told to stop taking before blood test, so on September repeat blood test I had stopped taking and results were in mid range.

Definitely have Hashimoto’s and brother has type II DIOZ and is prescribed T3 and T4 - should I get gene tested for this (I have no problems with weight, fatigue, nerves energy, muscle power etc).

SlowDragon profile image
SlowDragonAdministrator in reply to Mothebear

So you you may benefit from daily vitamin B complex …..but remember to stop taking vitamin B complex a week before ALL BLOOD TESTS as contains biotin

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

As you Hashimoto’s are you on, or tried absolutely strictly gluten free diet

If not, get coeliac blood test done BEFORE cutting gluten out

Mothebear profile image
Mothebear in reply to SlowDragon

Have been tested for coeliac and negative but am strictly gluten free and egg and dairy free as have been tested and had high antibodies to dairy and egg. Was B free for last blood test.

SlowDragon profile image
SlowDragonAdministrator in reply to Mothebear

So if gluten intolerant, dairy intolerant it’s HIGHLY likely you need addition of T3 prescribed alongside levothyroxine

Mothebear profile image
Mothebear in reply to SlowDragon

Thank you…all really helpful.

Annib1 profile image
Annib1 in reply to Mothebear

May I just ask how you got tested for dairy, egg (and maybe gluten)? How has it helped you by staying off them?

SlowDragon profile image
SlowDragonAdministrator

And in answer to question re NHS blood test soon ….. refuse to reduce dose levothyroxine

Ft3 is already (too) low

Ask for referral to endocrinologist of your choice

Myro profile image
Myro

There is no need to visit doctor. If can control hormone levels is good to. Doctor will wont to lower dose. But if You don't lose weight and don't have sleaping troubles or other ower high thiroidism troubles, do not change anything. Many hypothyroid pacients don't take thiroid medicine 24 hours before test. To avoid lowering dose. Don't know if it is enough time becouse T4 has long lasting effect. Don't change things which are working well. Some comments on your question are just wonderfull.

Mothebear profile image
Mothebear in reply to Myro

Ah, but there’s the rub. Endo prescribed but I think Eltroxin is more expensive so I have to ask GP each month for prescription- pharmacy can’t do a batch order. I think GP is ready to jump on lowering dose, even reverting toTeva!

The comments here confirm for me I need to get back to my Endo and talk through the T3 issue, but I know there is great resistance to prescribing it.

tattybogle profile image
tattybogle in reply to Myro

There is no need to visit doctor. ....

GP's are required to do a blood test to monitor the effect of the Levothyroxine they are responsible for prescribing .. whether we want to see them or not .

It's often possible to ignore them for year or two, (or even three!), but if we try and avoid it for too long then it runs the risk of GP eventually refusing to sign another repeat prescription for Levothyroxine until we've had a blood test done .

So if you want to continue getting a prescription for Levo , you do need to visit the doctor eventually .

Myro profile image
Myro in reply to tattybogle

My doctor is allowed to do THS. And to prescribe T4. But not allowed to do all thyroid hormones. This can do endocrinologist or thirologist. And many other test too. But for many years, is giving prescription for medicines, without any test. Symptoms of many health troubles are obivious and can be seen by symptoms. Roman doctors had great knowledge and even surgery success and no modern diagnostic tools. For thyroid hormones fine tuning is made by symptoms.

Clairewalker751 profile image
Clairewalker751

You're not over medicated in order to keep the GP off my back I skip a dose the day before then don't take a dose untill after my GP blood test effectively I leave 48 hours between last dose and blood test for GP

tattybogle profile image
tattybogle in reply to Clairewalker751

~ Missing levo before test by 24hrs is done to avoid a false high fT4 level , which will happen if test is done too soon after tablet is swallowed, as it shows up as a peak in blood levels about 3/4/5 hrs after taking it, (depending on the individual)

~ Missing Levo for 48hrs will obviously give a lower fT4 than average.

~ But even 48hrs is probably not long enough to have an effect on the TSH result .

And (unfortunately) it is usually the TSH result that Doctors look at first to decide if dose is too much .

~ To affect the TSH result you would probably have to miss Levo for way more than 48hrs ..more like several days (at least), which is risking being unwell for a few weeks as a consequence.

~ For some people, once their TSH is very low, it can take months to go any higher.

Mothebear profile image
Mothebear

Now there’s neat, but I do wonder if I do/will need some T3 at some point. Maybe best to leave sleeping dogs lie. This is such a helpful site!

Myro profile image
Myro in reply to Mothebear

Why? With those numbers. With that level of FT3, by your symptoms it is not needed.Learn rather of hypoglycemia. Fasting and reactive hypoglycemia, causes and symptoms.

Chrisuk84 profile image
Chrisuk84

I know when you've had Thyroid cancer they keep your TSH as close to 0 as possible. My GP keeps trying to reduce my dose but my consultant won't allow him.

tattybogle profile image
tattybogle in reply to Chrisuk84

True , but in the case of thyroid cancer they are balancing the risks of cancer recurring (if any remnant thyroid tissue is stimulated by TSH), against the perceived risks of low TSH...... so in this case they require TSH to be supressed .. ....

but that argument won't help convince a GP of someone who didn't have thyroid cancer.

If there's no thyroid cancer then GP is just looking at the risks of low TSH versus the risks of TSH 'in range.'

( and unfortunately they've all been trained to believe that low TSH leads to heart and bone risks )

Locky1971 profile image
Locky1971

I recently had a hyper swing. I have hashimotos autoimmune disease and I'm on 2 grains Erfa. Until this hyper swing which is quite common with hashimotos I felt great. My tsh was 0.01. The hyper swing made my heart race so much. I thought it was going to burst out of my chest. So my medication was dropped by half to stop it. Guess what? My tsh remained at 0.01. I was on 1 grain Erfa for several weeks then I went back to hypo because by then I was under medicated. Couldn't keep awake, hair coming out in handfuls. You know the score. My gp called me and said you're over medicated your tsh blah blah blah. I told him that I'd dropped my meds by half and my tsh is still the same and asked him to explain why he thought the tsh was a good measure of how I am when it clearly hasn't changed . He went very quiet and told me I had better speak to my specialist. I did and she put my meds up and explained that I'd had inflammation causing my thyroid to have a hyper swing and it had gone back to hypo. I increased meds now 1 1/2 and some days 2 depending how I feel. The tsh can be suppressed and many of us feel better when it is. But your t4 is at the top of the range and your t3 nicely in range. You'll know if you're over medicated as you'll get the shakes and your heart races. Then you know its time to reduce slightly. Mines a different at different times of the year. But don't be bullied into reducing meds. If you drop it slightly and still feel great that's fine. But if you drop it and feel bad try to make them listen. They don't know how you feel. If I'd listened to my gp I'd have been in a sorry state by now. Take care x

I am in the same step and going for blood tests tomorrow since the doctor added some new tests like prolactin, testosterone and dhea. Have no idea why.

Good luck!

Ukie profile image
Ukie

Hi all. This thread is really useful to me. How can I save it to refer to in future?

Thanks to all, you are doing such an important service for so many people.

tattybogle profile image
tattybogle in reply to Ukie

near top of post . just under the original question. (after 'related tags' )

you will see "reply" "like" "save" "report" "more"

Click ' save'

To retrieve saved posts :

very top of page

"My feed" "My Hub" "Chat" "Alerts"

Click 'my feed '

then click on 'saved posts'

a list of all your saved posts will appear.

Mothebear profile image
Mothebear in reply to tattybogle

Thank you again to all…. Very helpful.

Mothebear profile image
Mothebear in reply to tattybogle

Hi TattybJust for your info, if I open this site on my phone it does not give me the save option, just mention it as others may find the same.

Not to be defeated I have copied and pasted into my notes!

Thanks again

tattybogle profile image
tattybogle in reply to Mothebear

Ah .. sorry about that ... i still use a 'thick phone' from 1998! .. so i have no idea what you lot on smart phones see. (and i don't want to go there either.. if anyone buy's me a smart phone for Christmas they'll be getting it back for their birthday)

helvella profile image
helvellaAdministratorThyroid UK in reply to Mothebear

Are you actually logged in as yourself on the phone? Or just viewing posts without being logged in?

Saving posts would make no sense if you are not logged in. After all, where would they be for you to go back to them? They are a part of your profile information.

Mothebear profile image
Mothebear in reply to helvella

Thank you.

Ukie profile image
Ukie in reply to tattybogle

Thanks Tattybogle 😊

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