Very low TSH. Dr wants to reduce thyroxine. - Thyroid UK

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Very low TSH. Dr wants to reduce thyroxine.

sja11 profile image
38 Replies

I feel like crying and don’t know what to do. My Dr asked me to do a routine blood test to repeat my prescription. The results were;

TSH 0.14

FT4 20

Vitamin D 57. N nmol/L less than 75nmol/L is insufficient I have been taking 3000iu of vit D a day for the last 3 months yet my vit D is still insufficient.

My dr now wants to reduce my daily dose from 125mg of levothyroxine to 100mg. Is my dose too high?

I have spent the last 3 months on a low carb, gluten free diet. I finally got to a point where I feel good. My hair, which had receded about 2inches either side of my forehead, has finally grown back. I have energy, I don’t feel cold all the time, my skin is less dry, the pain in all my joints has massively reduced and I was very very slowly losing weight. 4kg over 3 months.

I tried to explain all of this but she has insisted my dose be reduced. When I asked for more tests she refused.

I don’t understand why my vit D is so low when I spend hours a day outside, I have a dog, and take a supplement. Or why I need to reduce my dose just when I’ve got to a point where I feel normal.

38 Replies
sja11 profile image
sja11

Oh and I can’t sleep or think straight either since it’s been reduced.

I asked for FT3 to be measured along with B12, ferritin and folate but she refused. Said FT4 and TSH were enough.

Ranges for FT4 12-22

Anic profile image
Anic in reply to sja11

From all that I’ve read here and my own recent experience...unless there’s a good medical reason to reduce dose then don’t. Especially if you’re feeling good.

My Endo just recently insisted on reducing my dose to 78.5mcg/day down to 71:5mcg/day. I wasn’t feeling great at the earlier dose but she insisted. So I did as she directed. Th second week I started getting painful joints, didn’t have that before. I couldn’t do things like I could two three weeks ago, I could hardly put my socks on, turn in bed, get in bed out of bed easily😢 I could only think of the drop in thyroid meds. I sent her an email telling her how I felt and asked if I could go back to previous dose, Endo came back and said “I'm not sure that reducing a little dose will have an immediate effect but happy for you to go up to the previos dose” but ok to do so. I also requested some T3 but was told not a good idea. I know I it’s not a big drop 10% but I was on very little anyway (I’ve had a thyroidectomy following thyroid cancer 5 years ago).

So I’ve now increased my dose and hope and pray it will at least go back to my previous state.

I did go on a bit but...What I’m trying to say is do ask more questions and ask to have a full panel bloods done for thyroid.

Meanbeannyc profile image
Meanbeannyc in reply to Anic

You have no thyroid and take only 70-75 mcg of T4?

Anic profile image
Anic in reply to Meanbeannyc

Yes 😢

Meanbeannyc profile image
Meanbeannyc in reply to Anic

That’s... odd.

Anic profile image
Anic in reply to Meanbeannyc

I dont convert to T3 too well also am low on D and B12 buy Endo was adament to reduce

Even after my symptoms of low meds

By the way Im in Australia.

Meanbeannyc profile image
Meanbeannyc in reply to Anic

That’s a very low dose for someone without a thyroid

Meanbeannyc profile image
Meanbeannyc in reply to Meanbeannyc

Are you extremely petite?

I’m very petite and take a lot more than that

Meanbeannyc profile image
Meanbeannyc in reply to Anic

What do your labs look like on 70 T4? Jesus.

Anic profile image
Anic in reply to Meanbeannyc

Just typed this for the third time...

My Endo wasnt in fav of T3 but not surprising.

Im 153cm and 58 kg on a good day oh and 63 years old.

My bloods were done on 78.5mcg

TSH .25 mIu/L

T3 - 3.9

T4 - 17.9

Meanbeannyc profile image
Meanbeannyc in reply to Anic

Labs look good.

I’m assuming top range high FT4 is 22?

And top range high FT3 is? 5 ish?

I’m surprised at what a little tiny dose u need. LOL

Anic profile image
Anic in reply to Meanbeannyc

I do need a little more prob cos my T3 is not converting too well. According to Endo it seems to hang around a bit more

TSH range is .40-4.00

T4 - top range is 9.0-19.0

And

T3 -?top range is 2.6-6.0

Anic profile image
Anic in reply to Meanbeannyc

Thank you for your replies

SlowDragon profile image
SlowDragonAdministrator in reply to Anic

Please always include ranges on all results

diogenes profile image
diogenes in reply to Anic

What these results tell me is:

1) Your FT4 is high but no badly out of range.

2) Your FT3 is barely within range at the bottom

3) Your TSH is low at 0.14

Lets put these figures into a story. It's well known now that if you have no thyroid at all and are taking T4 only, then the "healthy" range for TSH does not apply. Instead the best estimates are to be in a range 0.03-0.5. Second your FT4/FT3 ratio is 4.6/1, with a lowish FT3 and a highish FT4. This ratio indicates poor conversion - anything well above 4/1 is suspect. This means you ought to have a combination T4/3 trial to see if there are health improvements. The problem is that present day endocrinologists and doctors have been educated in the past by a false paradigm - namely that TSH is the truly valuable parameter for diagnosis. It is when diagnosing hypothyroidism but not when monitoring treatment. Modern understanding denies the overarching idea of TSH being always suitable as a diagnostic.

Anic profile image
Anic in reply to diogenes

I think this explanation for sja11 ?

diogenes profile image
diogenes in reply to Anic

It is - sorry pressed the wrong reply icon

TaraJR profile image
TaraJR in reply to diogenes

diogenes it seems well known on here that "...if you have no thyroid at all and are taking T4 only, then the "healthy" range for TSH does not apply. Instead the best estimates are to be in a range 0.03-0.5".

But do you have some references we can quote that say this, as many of us discuss it at appointments and are told the contrary, even though we know from experience that it is so!

diogenes profile image
diogenes in reply to TaraJR

This Ito paper is an important reference: I believe it is behind a paywall but TUK should have it on file :

Thyroid

. 2017 Apr;27(4):484-490. doi: 10.1089/thy.2016.0426. Epub 2017 Feb 6.

Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy

Mitsuru Ito 1 , Akira Miyauchi 1 , Mako Hisakado 1 , Waka Yoshioka 1 , Akane Ide 1 , Takumi Kudo 1 , Eijun Nishihara 1 , Minoru Kihara 1 , Yasuhiro Ito 1 , Kaoru Kobayashi 1 , Akihiro Miya 1 , Shuji Fukata 1 , Mitsushige Nishikawa 1 , Hirotoshi Nakamura 1 , Nobuyuki Amino 1

Affiliations expand

PMID: 28056660 PMCID: PMC5385443 DOI: 10.1089/thy.2016.0426

Free PMC article

TaraJR profile image
TaraJR in reply to diogenes

Many thanks diogenes . Good news - it isn't behind a paywall.

The study refers is based on patients with a total thyroidectomy. Would this suggested TSH range also apply to other patients eg who had RAI or a partial thyroidectomy, or atrophic autoimmune thyroiditis?

linda96

diogenes profile image
diogenes in reply to TaraJR

Every patient without any thyroid however developed, will behave the same. In between one has a slowly descending range for TSH, dpending on the degree of thyroid los. For example if half the thyroid still works possibly a TSH range of 0.25-2.5 (halving the difference betwen no thyroid and 100% thyroid re TSH). would work. But this of course is empirical because no-one with some thyroid can normally find out how much is lost.

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Did you stop vitamin B complex a week before last blood test?

Strongly recommend getting FULL thyroid and vitamin testing done privately

Just testing TSH and Ft4 is completely inadequate

ALWAYS do all thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Which brand of levothyroxine do you take

sja11 profile image
sja11 in reply to SlowDragon

I’m on generic levothyroxine. Almus

Didn’t stop any of my supplements before testing as she refused to test all but vit D

sja11 profile image
sja11 in reply to sja11

Not sure why vit D is so low when I’ve spent most of the summer in the sun and taking 3000iu a day

sja11 profile image
sja11 in reply to sja11

After I started feeling shaky/anxious I increased my carb intake from 30gms to 100gms ish and it stopped. The increased frequency of the palpitations didn’t stop with the increased carbs.

fuchsia-pink profile image
fuchsia-pink

Please remember you are ONLY over-medicated if free T3 is over-range ... and yours hasn't even been tested ...

Your GP is also missing the subtle but critical difference between having a very low TSH (and frankly yours isn't that low) and over-range free T4 and free T3 and NOT being on thyroid meds - which can be dangerous; and having low in range TSH and high in range free T4 as a result of being on thyroid meds - which quite a lot of research has shown isn't dangerous at all.

I'd refuse the reduction in thyroid meds - at least until free T3 has bee tested and shown to be too high if you feel fine like you are. [I was in a similar position myself a few years ago, and a small reduction in levo had me feeling dreadful but no impact on my bloods; the GP wanted to reduce further, I politely refused and eventually my poor conversion came to light and I'm now on levo/lio combination and feeling completely fine. Lio reduces TSH so my TSH is now quit a lot lower than yours]

Good luck x

Hillwoman profile image
Hillwoman in reply to fuchsia-pink

Noooo! Serum T3 does not predict sufficiency in peripheral tissues. Many people need to push T3 above range to feel well. :-)

Meanbeannyc profile image
Meanbeannyc in reply to Hillwoman

No one would seek help for hyperthyroidism if above range FT3 made everyone feel well.

Hillwoman profile image
Hillwoman in reply to Meanbeannyc

That's not what I said.

Meanbeannyc profile image
Meanbeannyc in reply to Hillwoman

It isn’t?

tattybogle profile image
tattybogle

Hi , if you click on this post ;

healthunlocked.com/thyroidu...

and read the first reply to it , you will find links to some useful discussion and evidence on 'risks' of low TSH.

Below range TSH is why you are being asked to reduce dose, ( your FT4 is within range)

You could look at these 'risks' for yourself, and then ague that you accept the 'risks ' of your TSH level, and ask to stay on same dose.

Or you can decide to try a slight reduction, since you did wonder in your previous post if you were overmedicated , i presume something about how you were feeling made you think that could be a possibility.

if you do decide to try a reduction it does not need to be reduced by 25mcg just because this is what size the tablets come in , you could reduce by 12.5mcg instead . I find this is enough of a change to raise TSH slightly , and alter how i function.

If you try a reduced dose for long enough and you feel less good than you did on 125, you will be able to report this to GP with certainty , which does help in the long run . It's hard to be assertive if you're not 100% certain you're right.

Since you have already reduced it , i t might be worth putting up with it, in order to say you've tried it . then you'll know for sure. And you will have a better case than you have now to insist on the dose you prefer.

sja11 profile image
sja11 in reply to tattybogle

I have a genetic arrhythmia from both my parents, and on the higher dose it became slightly more frequent.

No history of any heart disease or osteoporosis in the family, all grandparents lived into their 80s and 90s. My parents are both hitting their 90s in the next few weeks.

SlowDragon profile image
SlowDragonAdministrator

Many people need to fine tune dose....reducing by perhaps just 12.5mcg or even by only reducing by 12.5mcg alternate days, or even twice a week

But your Ft4 is not over range and without testing Ft3 you have no idea if you are good converter or not

Vitamin D is far too low

Likely b12 and folate may be too

Low vitamins tends to lower TSH, due to poor conversion of Ft4 to Ft3

Come back with new post once you get full results

Only test after being on constant unchanging dose for 6-8 weeks

By sounds of it, dose has already been reduced.....how long since dose changed

sja11 profile image
sja11 in reply to SlowDragon

Dose was reduced at the beginning of October. I did try to refuse but felt really pressured when 3 different doctors from the practice, including the senior partner, insisted that I needed to lower it as I was endangering my health.

Zazbag profile image
Zazbag

"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)."

This comes from DR Anthony Toft, former president of the British Thyroid Association. You can email Dionne at Thyroid UK for a copy of this article, send it to your GP. That's what I did and they haven't argued with me about my dose since. In fact, when I was on 150mcg and feeling hyper they actually told me to stay on that dose when I said I wanted to lower it! Despite suppressed TSH. Madness.

sja11 profile image
sja11

Thanks for all the information and advice I will do another test in a couple of weeks and insist I know the risks and am willing to accept responsibility.

sja11 profile image
sja11

Having just read Diogenes posts, particularly with reference to the paper on arrhythmia and elevated ft4, I can now see that I really need to get my ft3 levels tested asap.

Anic profile image
Anic

Thank you

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