Low TSH: I'd be really grateful for any comments... - Thyroid UK

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Low TSH

ElspethHayward profile image
29 Replies

I'd be really grateful for any comments to help me understand my latest blood test results - my TSH is really low and FT4 and FT3 seem fine:

TSH 0.02 mU/L 0.30-4.20mU/L

FT4 13.5 pmol/L 9.00-19.00pmol/L

FT3 4.5 pmol/L 2.60-5.70pmol/L

Many thanks.

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ElspethHayward profile image
ElspethHayward
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29 Replies
SeasideSusie profile image
SeasideSusieRemembering

ElspethHayward

If you tell us what thyroid meds you're taking then we'll be able to interpret your results appropriately :)

ElspethHayward profile image
ElspethHayward in reply toSeasideSusie

Thanks for you fast response! I'm currently taking Armour Thyroid - 2 grains one day and

1.5 grains the next.

SeasideSusie profile image
SeasideSusieRemembering in reply toElspethHayward

Elspeth

Your TSH is low because you're taking NDT, it tends to lower, even suppress TSH due to the T3 in it.

NDT also tends to lower FT4 so your result isn't a surprise.

Your FT3 is 61% through it's range.

So your results are what one might expect to see for someone on NDT.

How do you feel?

If you are symptomatic there's room for an increase, maybe an extra 1/4 of a grain and see how you are. You may be better with FT3 a little higher.

By the way, when taking NDT you're supposed to take the same amount every day, you shouldn't alternate different amounts, so depending on what dose tablets you have you should try and take 1 and 3/4 grains daily if staying on that dose.

ElspethHayward profile image
ElspethHayward in reply toSeasideSusie

Thanks for this. I’m seeing my endo tomorrow so will talk this through with her. She was the one who put me on the dosage!

Ossuryak profile image
Ossuryak

To me your taking too much because your TSH is low .I take NATURAL THYROID HORMONE and I find I have to take a combination of NATURAL THYROID HORMONE and T4 as the NATURAL THYROID HORMONE has TOO high amount of T3 in it for me so I take( 32 mg NTH 8.00am , 37mg of T4 only 3.30pm and another 32mg NTH at 10.30 pm ) that keeps my T4 normal level and does not allow my T3 to get too high ,consequently my TSH comes in at 1.5 which is normal for me

in reply toOssuryak

Sorry, no. I was told to reduce my dose of thyroxine because of a TSH test of 0.01 and it made me feel even more hypothyroid, with breathlessness and swollen ankles. It took nearly 6 months before I was finally (having proved that I was undermedicated after all, whatever the TSH said!) able to return to the previous dosage, which still isn't quite enough.

From what I read on here, this is pretty common. It simply means that the pituitary (for various possible reasons) is not producing enough TSH when needed.

Angel_of_the_North profile image
Angel_of_the_North in reply toOssuryak

Not true for everyone, as tests with ranges were designed for people taking levo only, not NDT, and very few people with thyroid problems seem to have a pituitary that behaves in a textbook fashion, Much better to look at actual thyroid hormones. Some people need more T4, some more t3. It's not set in stone

Ossuryak profile image
Ossuryak in reply toAngel_of_the_North

I think what applies to one person does not necessarily apply to others and I have been taking Natural thyroid medication and comparing results long enough to realise when my TSH is too Low i get heart palpitations anxiety sweat and feel quite unwell , i t seems to me it's all trial and error looking at blood results, dose of medication and how you feel. I try and keep my T3, T4, just above mid range and TSH between 1 and 2.

Otto11 profile image
Otto11

It looks like your TSH is low you may need to lower your dose of Thyroxine presuming you are on it.

in reply toOtto11

Nobody should lower the dose of whatever thyroid drug they are taking just because their TSH is low!!!

As pointed out above, NDT/T3 tends to lower or even suppress the TSH. You then need to go by symptoms and, above all, free T3 levels (as many switch to NDT/T3 because they don't convert T4 well enough).

The TSH Is a lousy indicator of thyroid health once on any form of thyroid hormone replacement. Most doctors disagree, I know, but many people are kept symptomatic on too low a dose of thyroid hormone because their doctors only care about their TSH, and disregard their remaining symptoms.

Some people do fine on a dose of thyroid hormone that keeps their TSH in range. But far from everyone gets symptom-free with a "normal" TSH, as long as their free Ts are suboptimal for their needs.

Otto11 profile image
Otto11 in reply to

I agree with what you are saying however I’ve had 5 months of palpitations & being wiped out totally not able to do anything much at all. I had my Thyroxine dose increased to 100mcgs last August as TSH was slightly raised & was left at higher dose. Repeat bloods in March showed TSH so 0.8 but GP ignored it then the palpitations started. He told me it was a virus I had several ECG’s too but nothing helped until a locus GP saw results & lowered my dose.

After a few weeks palpitations subsided & everything went back to normal thank goodness. Where I live they do not check T3 or T4 due to no funding. So have to go off symptoms & TSH only.

in reply toOtto11

Yes, I see what you mean. NDT seems to contain too much T3 for me as well so I am going to lower it and add some T4 to see if I can rid myself of symptoms such as racing heart and nervousness. One thing seems clear to me, and that is that I can NOT become symptom-free on NDT alone as it seems to contain too much T3 for my needs.

NDT alone worked great for me for several years, but I currently display several symptoms of too much T3.

It's sad that most doctors are so ignorant when it comes to the treatment of thyroid disease.

Ossuryak profile image
Ossuryak in reply toOtto11

I am the same as you when TSH is too Low.

in reply toOtto11

Not necessarily. It can make things worse (See my response to Ossuryak, above). TSH levels can alter in all sorts of ways and is not a good indicator of how much replacement hormone you need. And if someone is taking T3, (I'm just on Levo) it does apparently suppress the TSH production

Batty1 profile image
Batty1

I have super almost non-existing TSH on any combination of thyroid meds I take since losing my thyroid in 2016 ... I've been on T4 meds only to combo of t4 &t3 and Armour Thyroid and never had issue with hyper symptoms on any pill until few months ago when I started to have shaky hands on Armour Thyroid after a year of being on 2 grains that I split into 2 doses daily...connection or another issue who knows.

My FT4,FT3,T3 are also very low along with my low TSH....it's a mystery!

in reply toBatty1

Sounds as if you have central hypothyroidism or something similar. Maybe SeasideSusie , shaws or another of our experts can help?

...Oh, just noticed that you had a thyroidectomy. Not sure then.

Start a new thread maybe, so you can get more help on this?

Batty1 profile image
Batty1 in reply to

Lol, funny you mention that I asked just 6 weeks ago that same thing to my new Endo "could I have Central Hypothyroidism " because my TSH and rest of my numbers have always been low regardless of how much meds you take or add to me .....guess what he said " NO".

I'm doing a radioactive iodine full body scan early Nov and I wonder if something is wrong like pap cancer spread to Pituitary gland will show....not sure how this will work except for I will probably get fatter.

Angel_of_the_North profile image
Angel_of_the_North in reply toBatty1

If you had low thyroid hormones and low/low-normal TSH before taking meds you could have central hypo, but once on meds you can't tell.

Batty1 profile image
Batty1 in reply toAngel_of_the_North

Wouldn't it be wonderful if doctors would do at least a yearly thyroid panel on patients.

in reply toBatty1

All the best for that. Can you ask your consultant if that is what the scan is for. To put your mind at rest x

I'm honestly not sure if it's possible to have central hypothyroidism if you don't have a thyroid - could be badly mistaken. But so could the doctor be, as they don't seem to have much training on the thyroid. Or bad training.

So much to learn...

Batty1 profile image
Batty1 in reply to

My scan is because my lymph nodes are showing issues (had thyroidectomy for cancer 2016) Ovarian cancer in 2004 and the worse immune system ever, my entire life.

Teresamarie profile image
Teresamarie in reply toBatty1

Sorry to hear about all the health battles you’ve been through. My thoughts are with you.

xxxx Teresamarie

shaws profile image
shawsAdministrator

The TSH is not from the thyroid gland, it is from the pituitary gland. It rises when thyroid gland begins to flag and not send out sufficient hormones.

thyroiduk.org.uk/tuk/thyroi...

Fifteen profile image
Fifteen

So glad you asked this question. My TSH continues to be 0.02 also and my GP says he has never seen such a low reading. His reaction? Panic.

I have just negotiated an increase in my thyroxine dosage to 125mg (following advice from Administrators some times ago) as my T4 was at the lower end of the range. I also asked for Eltroxin as I getting headaches with the Teva. I said I would halve my Thybon 20 Henning T3 dosage 'in exchange' (so far I have not).

Sadly, the new Partner in the practice, an Oxford graduate, does not understand the thyroid at all. At first he refused to give me a prescription for Thybon 20 Henning and only did so when I showed him a previous one from my GP. When I told him my mood was low, he said he could fix that - and was about to write a script for Prozac! A very sad state of affairs.

My GP is insisting I be retested in 4 weeks. I shall make it 6. I am concerned about his reaction if (when) my TSH is still low.

ElspethHayward profile image
ElspethHayward in reply toFifteen

Thanks for your reply and good luck!

JanePound profile image
JanePound in reply toFifteen

I take extended release T3 and my TSH is almost non existent. I told my new GP that I had been on this for almost 20 years, am stable and very healthy for my age (66 with resting heart rate around 60-64 bpm) go to the gym and can racewalk at 4.5 mph and that I would be staying on this medication. She just said yes and emailed a prescription to the USA.

I don’t know what my TSH is anymore because I’m well. I seem to have persuaded the GP of this, for now.

Fifteen profile image
Fifteen in reply toJanePound

You are very fortunate. My GP thinks he is 'liberal'. I think he is also scared - as he missed cancer twice (larynx and breast), I had hoped for more from him. I am 73.

He does not take any notice of my Cardiologist's advice or my excellent Bone Density results.

Last October, my (leading) Cardiologist advised that I should continue on Liothyronine as it clearly improved my quality of life and my Endocrinologist had recommended it.

Neither my GP nor Prof Meeran (the endo who sent out that very damaging 'edict') took any notice.

My Bone Density, tested in December, is excellent.

Seems I cannot get proper treatment.

Do you live in London? If so, would you let me know (privately) who you GP is?

Some NHS GPs used to also see private patients. A disgruntled GP I met recently told me that the NHS does not allow this anymore.

JanePound profile image
JanePound in reply toFifteen

Sorry, I now live in Scotland but previously had a good GP in Merseyside.

Fifteen profile image
Fifteen in reply toJanePound

You are fortunate. A much better NHS with higher morale all round.

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