worried about TSH test results

[Lipstickle]

New to the forum so apologies if I make any newbie errors!

I’ve been hypothyroid with presumed Hashimoto’s (positive antibodies test) and medicated with Levothyroxine since 2012. Had a scan back then that indicated thyroid had burned out. Recently experiencing hypo symptoms including joint pain, tiredness, feeling constantly cold etc. Been on 150mg for 2 years - weight stable (fat but not getting fatter!).

Latest test results were serum tsh 0.08 (normal range given as 0.27 to 4.2) and serum free 18.3 (normal range 11.1 to 22). GP says no need for appointment to discuss as serum free in normal range and hasn’t changed meds or requested further tests. Should I push on this? Could there be a pituitary issue? I’m menopausal and on HRT for past 3 years and have IBS if any relevance.

Advice gratefully received.

[greygoose]

Why would you think there's a pituitary 'problem? With an FT4 of over 18, your pituitary has decided you don't need TSH anymore, that's all, perfectly 'normal' and not a problem at all.

[Lipstickle in reply to greygoose]

Because I assumed reference ranges were there for a reason? So being fairly outside of the lower limit might not be a good thing given experiencing hypo symptoms?

[greygoose in reply to Lipstickle]

TSH doesn't cause symptoms whether it's high or low. It's low T3 that causes hypo symptoms.

As for ranges, have a look at this article:

helvella.blogspot.com/p/the...

[Lipstickle in reply to greygoose]

I get it doesn’t cause symptoms but if everything is perfect why am I having them? I guess could be something else going on 🤷🏻‍♀️

[greygoose in reply to Lipstickle]

Who said everything was perfect? You cannot possibly know by just testing the TSH. You don't even know what your FT3 is - it's probably too low. And, as I said, it's low FT3 that causes hypo symptoms. Don't be taken in by that old 'it must be something else' line that doctors like to hand out when they have no idea what's wrong.

[Lipstickle in reply to greygoose]

Yeah thanks. I’m scared the GP is just going to reduce my levo without investigation so it’s good to be armed with the advice that FT3 needs to be tested.

[greygoose in reply to Lipstickle]

Refuse to reduce it if you don't want to. Your dose is supposed to be a joint decision. He's there to advise you, not to dictate to you.

[Lipstickle in reply to greygoose]

Thanks so much I will be assertive with GP. I need to be much more clued up on this stuff having bobbed along with the condition for 13 years uneventfully!

[greygoose in reply to Lipstickle]

You absolutely do, yes.

[Suzi-B in reply to greygoose]

I love that you say that it’s a joint decision, because my doctor presently wants to reduce my thyroid meds and i’ve refused, reason being i feel fabulous for the first time in 20 yrs……. and he wants to reduce my meds 🤨 i pick up my prescription today let’s see if he’s listened to me!!

[greygoose in reply to Suzi-B]

I wouldn't like to be in his shoes if he hasn't!

But I did say it 'should be'. I know it isn't always.

Trouble is, they just don't care how we feel. We could be at death's door from under-treatment but if our TSH is below range, they'll still want to reduce the dose. They just don't know enough about thyroid to understand.

[Suzi-B in reply to greygoose]

Exactly that! my doctor admitted i probably know more than he does, yet still i’m not sure he’s listened to me 😩

[PurpleNails Administrator]

Welcome to forum

The TSH (thyroid stimulating hormone) is a pituitary hormone. It can be unreliable for many reasons but it’s highly unlikely to be an issue with the pituitary.

Your FT4 is very good in range, most would feel well with that. However what’s not been added or not tested is the active FT3 levels. This unfortunately isn’t always tested.

Often FT3 is what affects symptoms, it possible you aren’t converting to FT3 & have hypothyroid symtoms.

Testing FT3 levels & key nutrient's (folate, ferritin , B12 & vitamin D) is first step to investigating this. GPs often say they are unable but there are private options many people use.

Many doctors would see low TSH and assume you are over replaced or say “hyperthyroid” & reduce levo, but without a full set of results and seeing your FT3 level reducing could leave you with more symptoms.

[Lipstickle in reply to PurpleNails]

Thank you so much this is precisely the guidance I needed. I will ask for an FT3 test.

[lisabax in reply to Lipstickle]

Don’t be disappointed if the GP refuses to test T3. Lots of us take private inexpensive tests. Many listed on Thyroid UK website

[Lipstickle in reply to lisabax]

Thank you that is so good to know.

[Suzi-B in reply to Lipstickle]

beware they might say no like my doctor has because they say nhs don’t test T3!

[lynmynott Partner Thyroid UK in reply to Lipstickle]

Do also ask for a vitamin B12 test as the symptoms are very similar to those of hypothyroidism. Don't just accept "normal" - make sure you are not near the bottom of the range as the B12 range is very wide. Also, the NHS don't do the active B12 test which is a better test.

[Lipstickle in reply to lynmynott]

Thank you this is so helpful

[Suzi-B in reply to PurpleNails]

this is the trouble they automatically think your hyper when in fact your levels are optimal, this is what’s happened to me! at the mo i’ve never felt better in 20 years yet they want to reduce my meds, ive refused! they have not tested my ft3 as they say they don’t it’s not part of the nhs testing!! 😡

[tattybogle]

should you push on this ,,, no, not unless you want them to reduce your dose of levo ~ because that is the first thing they will do if you query the low TSH.

GP has done the right thing for now ie. not worry too much about a 'one off' low TSH if fT4 is ok and patient has no symptoms of overmedication.

of course if you do notice any symptoms of overmedication, then it's worth trying a slightly lower dose for a couple of months to see if it improves how you feel , but since your fT4 is not particularly high at the moment , and since feeling cold does not fit with overmedication , lowering the dose does not seem like a good idea to try at the moment.

[Lipstickle in reply to tattybogle]

It isn’t a one-off in that it was outside of range last year too (it’s gone even lower this year). I’m feeling under rather than over medicated though.

[Clara62 in reply to Lipstickle]

I think you MUST test your FT3 level. It is the active thyroid hormone, if you don’t convert well, it could be low and leave you in a state of hypothyroidism regardless the good level of FT4.

[Lipstickle in reply to Clara62]

Thank you for this excellent advice. This forum has been an eye opener! Am now realising that my IBS that GP breezily told me was unconnected could well be down to the Hashis too.

[Jingley in reply to Lipstickle]

Digestive issues are extremely common here and many members, me included, have had to tweak our diet and avoid certain things.

[Lipstickle in reply to Jingley]

Can I ask do you have to be strictly gluten free or can you tolerate low gluten? I had thought I was ok with things like sourdough and Dr Karg crackers but now I’m wondering if I need to go the whole gf hog.

[Jingley in reply to Lipstickle]

I personally have no issues, that I'm aware of, with gluten. My issues are lactose related so I replace dairy with alternatives.I'm not the best person to advise on a gluten free diet. Sorry.

May be worth doing a search to see what others have posted🙂

[tattybogle in reply to Lipstickle]

have a look through this post and replies , it's a collection of useful info to help you make your mind up re. Low TSH 'risks' / vs quality of life :

( personally, i'm not overly worried as long as mine stays above 0.04 ish .. i'd rather it not become totally supressed if i can help it ).

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

[Lipstickle in reply to tattybogle]

Interesting. Thanks so much

[Wua13262348 in reply to tattybogle]

I had FT3 at 89.73% on 2/9/24. I was very chuffed that TSH was 0.044!!! per your post that TSH 0.04 or above not a worry. I like to think some checks and balances were working well here.

24/2/22 TSH 4.02, FT3 91.89% a bit more of a worry!

[PercheronLove]

I’d be wanting a TSH of 0.3 or above re bone and heart health. But people here are more knowledgeable than me.

[Lipstickle in reply to PercheronLove]

Bone health is indeed a real concern

[Jacksonnz]

Whenever my tsh drops below 0.1 (currently 0.09) I get cold hands and sometimes a racing heart and generally feel awful. I always find this to be case with experience of over the last 14 years. In my case, I slightly reduce my dose and feel better.

My t4 and t3 are both within normal range albeit the t3 is not same percentage through range.

[Lipstickle in reply to Jacksonnz]

I am so gormless I actually hadn’t thought about trialling myself on a slightly reduced dose. I do have some 25mg knocking about so could reduce from 150 to 125 and see how I feel.

[Jacksonnz in reply to Lipstickle]

It’s really important to get all relevant tests done first.

I just know that in my case specifically, I get very cold hands to the bone, have racing heart. This has happened to me on about 4 occasions during 14 years. It’s quite contradictory I know. I do feel better myself when I slightly reduce my dose. I am going to see an endocrinologist to discuss.

I was also on hrt and recently came off, so did wonder if my recent tsh drop had been as a result of changing hormone levels.

Anyway, good luck and get your relevant tests done before changing med dose.

[Lipstickle in reply to Jacksonnz]

Thank you that is sage advice.

[Tina_Maria in reply to Lipstickle]

I would also advise you to do a private thyroid function test first before you tweak your dose. Your T4 might be quite good in range, but your T3 might be low and this is why you may have symptoms. If you reduce your dose (by the way 25mcg is a lot and will make you feel awful), you may reduce your T4 as well as your T3. And if your T3 is already low and gets even lower through the reduction, you will feel even worse! 😕

So do your test, and then you have a clear er picture of what is going on. If you do not convert T4 to T3 well, you might need to look at your nutrients (iron, folate, Vitamin B12 and Vitamin D) and if any of those are deficient, you can supplement, which will help with your conversion. If that is still not sufficient, you may need a small amount of T3 added. But one step at a time! 😉

[Hectorsmum2]

Do get your vitamins tested as well. Your body wont be able to make good use of the hormones you are taking if they are low. You need your B12, folate, ferretin and vit D tested. I find that if I tell my doctors that thyroid uk have advised I get tests done they tend to do as told but I am lucky and in a good GP surgery

[Lipstickle in reply to Hectorsmum2]

Thank you that’s v helpful. I have one of those male GPs who bristles when I am too direct!

[Tina_Maria in reply to Lipstickle]

Well he just has to suck it up! 😂

I had success with this tactic of being assertive and direct, I am on the dose I need, send them my private test results (including T4 and T3) and tell them no dose change required. My TSH is 0.001 and I feel good! They know now not to poke the bear as they get an earful, so they leave me alone and issue my prescription every 3 months... 👍😉