Low TSH: I had a phone call on Friday asking me... - Thyroid UK

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Low TSH

FleetRose profile image
17 Replies

I had a phone call on Friday asking me to come to an Endo appointment this Monday - unusual! It is a year since my last appointment but I suspect my endo has taken fright at my low TSH and will want to discuss stopping my prescription. My latest results were

TSH 0.02 (0.35-4.94)

Ft4 11.4 (9-19.1)

Ft3 3.9 (2.4 - 6)

My endo originally said I could continue with my current prescription (levothyroxine 50mcg, Liothyronine 2 x 5 mcg) at my own risk but as the TSH has dropped lower still I suspect she has changed her mind.

I have read Rapunzel's post and replies. I have two questions:

1) If I have to reduce, would it be better to reduce the levothyroxine or the liothyronine? (I am a poor converter.)

2) Why, if my TSH is so low, do I not have higher T3 and T4 readings? Is there something else that could be wrong with the HPA axis?

I suspect someone will ask, well how do I feel? A difficult one as I also have Polymyalgia ( the diagnosis now being queried after two years), am on high dose steroids, have pains in my legs, feel weak, wobbly and tired etc!

Any help or suggestions will be gratefully received. I feel as if I am going round in circles with this.

Fleet Rose

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17 Replies
SlowDragon profile image
SlowDragonAdministrator

Steroids will significantly lower TSH

As will taking almost any dose of T3

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Is that how you do your tests?

Free T4 (fT4) 11.4 pmol/L (9 - 19.1) 23.8%

Free T3 (fT3) 3.9 pmol/L (2.4 - 6) 41.7%

Your results suggest you are on too LOW a dose levothyroxine and need 25mcg dose increase in levothyroxine

How much levothyroxine were you on BEFORE T3 was added?

Essential to test vitamin D, folate, B12 and ferritin

Please add most recent results

Exactly what vitamin supplements are you taking

FleetRose profile image
FleetRose in reply to SlowDragon

Thank you so much for your replies. I do feel that I am under replaced but it will be fun trying to convince my Endo of that! I did not know about the effect of steroids on TSH so thank you for that information.

In answer to your questions, yes, blood test taken as per protocol. I was on 75mcg Levothyroxine before the T3 was added. I started taking steroids in November 2022 initially at 20mg, now tapered to 9mg.

Other Medichecks results:

CRP (HS) 0.373 (less than 3)

Ferritin 118 (30-332)

Folate 34.6 (more than 7)

B12 active 108 (37.5-188

Vit D 105 (50-250)

Thyroglobulin 14.20 (0-115)

Thyroid Peroxidase 51.7 (0-34)

I am on bHRT and take a long list of supplements: D3 with K2, omega 3 fish oil, methyl B complex (Lamberts), selenium 100mcg, BioCare OsteoIntensive (with more D3, K2 calcium and magnesium citrate, manganese, boron and silica).

I will argue my case for increasing Levothyroxine on Monday and let you know how I get on. Thank you again. I really would feel stranded without the help from all you wonderful people.

SlowDragon profile image
SlowDragonAdministrator

am on high dose steroids, have pains in my legs, feel weak, wobbly and tired etc!

Exactly what steroids and dose

Pains in legs common when hypothyroid

Also could be low vitamin D

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

healthunlocked.com/thyroidu...

So very petite

Perhaps initially only increase Levo to 62.5mcg daily

Were you always on steroids when on just levothyroxine?

SlowDragon profile image
SlowDragonAdministrator

jclinmedcasereports.com/art...

Corticosteroids can sometimes cause hypothyroidism or make it worse. High doses of prednisolone can slow the conversion of the thyroid hormone to the more active form.

Aim and Objective: To describe a case of Corticosteroid (Prednisolone) Induced Hypothyroidism

ncbi.nlm.nih.gov/pmc/articl...

DippyDame profile image
DippyDame

Your Frees are very low, we aim to have both roughly approaching 75%

FT4 is 23.76% thro' ref range

FT3 is 38.24% ditto

You can see therefore that you are undermedicated

Your dose, 50mcg levo plus 10mcg T3 is insufficient and very likely to cause several symptoms

Check this list of symptoms, I think you will find some you recognise

thyroiduk.org/signs-and-sym...

....at my own risk

I take it she was referring to the T3. If T3 is used correctly it is no more "risky" than any other medication. The thyroid produces T3 because it is vital to the body...yet medics run for the hills if it's mentioned!!

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

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

Re TSH...it is basically a messenger but I guess you know the score

FT3 is the most important result followed by FT4

Also...

Steroids can reduce TSH secretion, leading to less thyroid hormone in the body.

Exogenous T3 lowers both TSH and FT4

If I have to reduce, would it be better to reduce the levothyroxine or the liothyronine? (I am a poor converter.)

If you are a poor converter why would you reduce exogenous T3 and reduce already low FT3 even further!

You should be increasing your levo to 75mcg. Test again after 6 weks and then review dose again

Are you sure that low thyroid hormone is not the cause of, or contributing to, your symptoms..... polymyalgia is not a disease, it's a collection of various symptoms! Check the symptom list again.

This endo, and her lack of knowledge, isn't doing you any favours.....but maybe she will have learned a few things before Monday!!!

Don't accept any treatment you feel uncomfortable about....you know your body better than anyone so listen to it!!

FleetRose profile image
FleetRose in reply to DippyDame

Thank you DippyDame for your replies and some very useful links. Very interesting to know about the effects of steroid use! I certainly feel under replaced and can tick off many of the symptoms on the list (except, oddly, I have always been underweight).

Thank you also for the encouragement to be confident about what my body feels like and not accept treatment just because it's recommended by a possibly ill-informed Endo!

Minimol profile image
Minimol

I’ve always maintained with my medics that as TSH is a measure of pituitary activity and not thyroid function it should not be used to dose thyroid hormone replacement and is only helpful in diagnosis.

serenfach profile image
serenfach

Have a read of this and if necessary, stick it under your Endos nose!

thyroidpatients.ca/2019/03/...

I know you have the other tests results but it shows that TSH should not be in the picture. Did you know that the levels for TSH were first set by testing just 19 men!!!

And if she starts on "bad for heart and bones" it has been proved that very low T3 or very high T3 has an effect on both, but anything in range does not.

Good luck and hope she listens to you. You are underdosed in my opinion, and I just wonder if you were on the correct dose for you how many of the other symptoms would disappear.

FleetRose profile image
FleetRose in reply to serenfach

Thank you for this Serenfach - a fascinating statement by John Midgely! I’m so grateful for all the support I’ve received on this topic.

EPNM profile image
EPNM

My TSH is always 0.01. My endocrinologist accepts that and leaves me on Liothyronine 5mcg twice daily, thyroxine 75mcg. My blood results have been consistent for many years. I'm 81 and always busy. My understanding is that the TSH isn't as important as feeling well. Hope that's helpful.

FleetRose profile image
FleetRose in reply to EPNM

Thank you EPNM, that’s reassuring to know. I will post after my appointment tomorrow (late afternoon) with an update.

kiefer profile image
kiefer

Tell your doctor that corticosteroids (as SlowDragon also mentioned) will cause a number of effects, not only to the TSH but to thyroid function in general.

There may also be increased binding of thyroid hormones to their carrier proteins, decreasing the amount of Free T4 and Free T3 available.

List of effects of elevated cortisol on thyroid function
FleetRose profile image
FleetRose in reply to kiefer

Thank you for replying kiefer. All the information about the different ways steroids can affect thyroid function could well explain a lot of my problems. I will certainly be well prepared for my appointment tomorrow and will let you know how I get on.

kiefer profile image
kiefer in reply to FleetRose

You're welcome. Do let me know how it goes.

Here's a link that goes into greater detail:

rupahealth.com/post/the-str...

Catseyes235 profile image
Catseyes235

you can check my posts re low TSH which has been 0.1 or lower for 20+ years. Do not reduce your dose unless you are truly experiencing hyper symptoms. (I did oblige one doctor with disastrous consequences). Go by HOW YOU FEEL!! Good luck.

FleetRose profile image
FleetRose in reply to Catseyes235

Hi Catseyes235

Thank you for replying. I’ve just worked out how to check past posts so that was useful! I’ll report back on my appointment late today.

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