Told TSH normal at 11.16

[Thyroidy]

I previously had subclinical hypothyroidism & a lovely big goitre caused by hashimotos. My levels went absolutely all over the place for a while swinging from subclinical hypo to hyper so I was under a consultant. I never had any medication and was signed off last month as my levels had stabilised.

My GP sent me for a bunch of tests last week and told me thyroid levels were normal. I've just checked the app and my TSH is 11.16.

I really don't know what to do - is this still subclinical and likely to go back down? Or do I need to badger the GP. I feel the worst I've felt in a long time atm and it looks from other results that my inflammation is a bit high and my iron, b12, folate and haemoglobin are low. So not sure if it's just the thyroid causing this or across the board.

That is too high. You need to challenge this with your GP and if they won’t listen you need to ask for a second opinion. I have hypothyroidism and feel best when my TSH is around 1.

you need medication for that. See another GP, challenge this, look at the Nice guidelines. Untreated hashimotos can cause lots of other issues such as liver problems. Get it treated!

www.nice.org.uk/guidance/ng145/chapter/Recommendations#managing-and-monitoring-subclinical-hypothyroidism

Thank you - didn't know that link. They did test my liver function as well and said it was normal. Sitting on the top end of the normal range on a couple of things by the looks of it. Not sure how significant any of that is. Ive only just got the nhs app and it looks like my iron & hemoglobin have all been low since I had my ds a few years ago...I really don't understand why they would tell me things are normal when they're not! I mean even if they don't think it's clinically significant if things are outside of range why not say that? I guess to get me and my none specific symptoms to f* off 🙈

God no not normal!Have you also got results for T4 and T3 levels, thyroid should never be medicated going by your tsh alone ,it’s the other levels that are more important.More to the point, how are you feeling ? I’m on meds at a much lower level as gone private as you can be very symptomatic but show as sub-clinical according to the nhs set levels . You know that if you have hashis there’s also other things you can do ? Google auto immune protocol- there’s no point waiting until you are unwell enough to be given meds on the nhs.

@Utterlyb T3 they haven't checked but T4 is within the normal range its 14.6.

I feel terrible honestly like I'm barely alive. Hair's fallen out, so low energy and fatigued, crash out asleep the second ds is in bed and wake up feeling like i haven't. I've got shakes and muscle cramps, get breathless going ip the stairs and terrible water retention in my legs and arms (that's actually what i went to see the gp about and he said my arm pit lymph nodes felt swollen).

I had hashimotos after giving birth but things did eventually settle down. They've not tested for antibodies either so i don't know if it's a flareup of that or something else.

Weirdly my cholesterol is high when it's never been before and wasn't 3 months ago. I assume it's all linked in someway. Called my husband when i saw the results to say I bloody told you I felt ill!

@Thyroidy it helps to read up as I have learnt so much more since finding out,if you are on Facebook ,hashimotos 411 is a great site. When posting labs remember to always post lab ranges - often results may be within “normal “ range but often people with hashis need it to be optimal not just normal. Some people ( me included ) can have trouble converting T4 to T3 hence why some never feel well even when on levo…..hence why privately meds that also contain T3 can be available and make a big difference. Things like low ferritin/ low iron,low vit d are always important to look into too…again ,problems with gut and digestion are not uncommon in hashis. Overall it’s remembering that it’s an auto immune disease….once you have got 1 you are more likely to end up with others too ( hence why dietary changes are recommended, often removing gluten ,dairy and soy at a minumum) . It’s a lot to get your head round but ultimately your gp needs to start looking at your symptoms and how well or not you are (and you sound not!) and make a action plan based on that, not just your numbers. Have you asked about trialling levo just to see if it makes a difference?

Rising cholesterol is common with an underactive thyroid. It will come down with correct treatment of your thyroid. But a TSH of 11.16 is nowhere near normal!! As your FT4 falls within the normal range (does sound rather on the low side if the range is the one I'm familiar with) it is likely your FT3 that is very low, and of course that hasn't been measured. You may have poor conversion i.e. your inactive FT4 needs to be converted by your body to the active FT3 hormone. If there's any problem there then you will become hypothyroid.

Would be good if you could do finger prick blood tests that include FT3 and the relevant antibodies, then you will have confirmation it's Hashimoto's (almost certainly is).

Agree with a PP, this is predominantly about having an autoimmune disease, so there's a lot that needs to be checked as it's a whole body problem, not just your thyroid.

That is disgraceful even by nhs poor standards, it should be under 5 for NHS ranges, optimal would be under 3. I have recently paid for a private thyroid doctor and she told me to have b12 and d supplements as well as selenium. Since then I have managed to reduce my cholestrol and got my TSH down from 4.9 to 3.5 with no other changes in meds. I think you should be on levothyroxine if you aren't already

God, some GPs are shit at treating thyroid issues! Your TSH is high, and I agree with a PP,, your T3 is probably low. And you are symptomatic! Cholesterol, B12, folate and ferritin levels are all linked to thyroid dysfunction.

The Health Unlocked thyroid forum is excellent for advice, and yes, read up on the NICE guidelines and be firm with your GP.

Not normal, you think a GP could read a reference range. See another GO and complain about this one.

Apologies for jumping on this thread but I've had a raised TSH for 3 or 4 years, T3 and T4 within normal range. Feeling pretty rubbish, always cold, dry skin/nails, tired, anxious, poor memory and concentration particularly which is affecting my confidence at work. Recent thyroid antibodies are high (260 compared to normal of 0-33) and finally managed to get an appointment today with GP to review. Had expected to be started on low dose thyroxine but GP didn't want to do this. Apparently I need to see if my TSH gets worse as, although it's working harder than it should, it's maintaining my thyroid function.

Is this correct? Would have thought supporting a thyroid which is only going to get worse with a low dose of treatment would be better than waiting until it gets worse and I potentially need a much higher dose. Anyone able to offer any insights on this please? Can't tell if I'm being fobbed off or not.

So I went back and saw a different GP. When I called up I told the receptionist what my TSH levels had come back as and she made me an emergency appt! I think when even the receptionist thinks it's an issue it's a probably an issue! This GP started me on thyroxine and I'm on day 2 of taking it. So glad I got it sorted! I went back through photos yesterday trying to work out when my goitre first reared it's ugly head and it was 2020! Really hoping I get on OK with the medication 🤞

@stringbean I don't know enough to know what they should do but I was referred from the GP to endocrinology when my antibodies were high and my TSH was subclinical. I'm not sure if there's a specific referral criteria though. Endo monitored me until my antibody levels were stable but never prescribed anything. I've since gone into clinical hypothyroidism after being discharged. It feels like nobody understands what they're doing with thyroid problems! I don't understand why it seems such a battle to get help.

Glad you've finally got some treatment sorted @Thyroidy - that's good news. My GP has said she'll contact the endocrinology dept for some advice but, looking at the NICE guidelines, it says that a 6 month trial of levothyroxine should be considered for anyone under 65 with symptoms and a TSH above the range but less than 10 on 2 occasions at least 3 months apart. Had fully expected this and probably should have pushed a bit harder for a trial. Will wait and see what she says but it all takes so long!

@stringbean no it's cruel, not correct! What are they waiting for, this is what gets me every time. Are they waiting for you to be so sick you can't drag yourself out of bed or you end up in a myxodema coma? What are they waiting for!!!! I tell you if it was a doctor with those symptoms they'd want immediate treatment.

Yes, that's what I don't get. Surely better to start treating with a low dose as it takes the pressure off a thyroid that's already working too hard. Makes no sense to delay treatment. It's not as if my thyroid will spontaneously recover - it's only going to get worse!

Monitoring by antibody levels is nonsense as well, they can go up and down frequently over the course of the disease as attacks on the thyroid occur. Just because they are low right now doesn't mean they won't soar again in a month or so. There's so much ignorance around thyroid disease.