I'm new to the forum, so hi everyone! Here's my story.
I'm a 49 year old male. My hypothyroidism was discovered in 2018 as part of my diabetic blood tests (I've been type 1 diabetic for 30 years).
Very little fuss was made at the time, it was almost presented as a trivial thing. It all made sense to me as I'd been feeling tired and run-down for a while. I was told that diabetics are prone to hypothyroidism, and to take 50mg Levothyroxine a day.
I was then told about a year later that my thyroid levels were too high, so change to 50mg/every 2 days. And then I was told it was too low again, so increase it back to 50mg.
I've never felt that the medicine ever made me feel better or increased my energy levels. My last bloods in 2022 were 'normal' (no further explanation). But when I look at the symptoms of hypothyroidism, I tick almost all the boxes and am feeling pretty grotty.
I'd like to get some private blood tests done to see my own levels and try and interpret them before I approach the doctor again. I only get tested once a year by my doctor, so am not due for a while. In the last 6 months I've been feeling very low on energy again as well as a range of other symptoms.
But which type should I get? Is there a chance I could have 'normal' levels, but still feel all the symptoms? Which blood tests would help me there?
Any help appreciated.
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mids_thyman
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So we can offer better advice, we need to see your blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health: thyroiduk.org/help-and-supp...
As 50mcg is usually given as a starter dose of Levothyroxine, I suspect you would benefit from an increase in medication to alleviate your hypothyroid symptoms. Do post your blood test results when you get them. Definitely worth following forum advice to complete the blood test as early as possible and take your usual Levo dose after the blood draw.
This pretty sums up my problem. I've never been shown any of my results or had them explained to me. It's like it a side-piece to my diabetes.
So I'm afraid I can't post them. I guess I'm asking is there a simple test first of all to establish if my levels are at least in the normal level on my current dose? I suspect that if this is auto-immune disease for diabetics then it could have progressed, and my levels could have dropped on 50mg, so I need to up my dose.
I see monitormyhealth do a £32 test that measures TSH, FT3 and FT4 (these things mean nothing to me yet!). Would that do the job or would I need something better?
Hi, personally I would try to get key vitamins tested too. Medichecks often discount on a Thursday (aka ‘Thyroid Thursdays’) , so this may be a cost effective option. I, like many other forum members, only began to feel well when both thyroid levels and key vitamins (ferritin, folate, B12and Vit D) became optimal. It’s also useful to know of your thyroid condition is autoimmune (aka Hashimotos).
You are legally entitled to a copy of all blood tests from your GP, so do ask for copies of any relevant tests.
Keep asking questions, we are a friendly bunch and are here to offer help and support.
It very much sounds like you have a paint by numbers doctor who’s reacting solely to your TSH level. It’s a common misapprehension amongst many GPs that TSH is all you need to know (and then to religiously keep adjusting replacement thyroid hormone dosages in an often daft attempt to maintain the TSH within what’s actually a ridiculously wide laboratory reference range. No matter what symptoms the patient is experiencing )
But it’s much more nuanced than that. In fact, once you start being treated for hypothyroidism and start taking replacement thyroid hormones, TSH is far less useful for assessing whether someone’s on the right dose of levothyroxine.
Anyway—it’s great that you’ve figured out things could and should be better.
The parent charity for this forum, Thyroid UK, has lots of “money off” arrangements with private blood test providers (I imagine we bring them quite a lot of customers!).
As type one diabetic (autoimmune) it’s highly likely your hypothyroidism is also autoimmune
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
50mcg is only standard starter dose. Levothyroxine doesn’t top up failing thyroid, it replaces your own thyroid output. It’s important to be on high enough dose.
Come back with new post once you get hold of old results and full new test results
If Medichecks do a Thyroid Thursday I'll go for the Advanced Thyroid Test. Otherwise I'll do the Full Health-Check at MonitorMyHealthfor £65 (less discount). That will give me:
TSH
FT4 (is this the same as free thyroxine?)
FT3
Ferratin
Folate
B12
Vitamin D
I can't even get an appointment with my doctor at the moment, let alone past results. If I get this test and post the results, do you think that will be enough for the good folks on here who understand it all much better than I do (currently) to tell me if my Levothyroxine dose isn't doing the job?
no ... proving autoimmune cause for hypothyroidism doesn't have any direct bearing on finding correct dose .... autoimmune can explain fluctuations in hormone levels and confirms it's a permanent condition. (if you are T1 diabetic ,your hypothyroidism is almost certainly autoimmune)
easiest way to get hold of latest set of results from GP is go in and ask receptionist for "a printout of thyroid results from 'x' date".. (you have a right to a copy as long as GP has already seen them).
they may say they need to check with GP first , if so ,say you'll come back in a day or so to pick up .
They shouldn't really ask why you want them , but they sometimes do , i which case " for my own records " will suffice .
You want:
TSH ( Thyroid Stimulating Hormone ) ~ result and [lab range] ~ this will have been done.
fT4 (free T4 / thyroxine) ~ result and [lab range] ~ this may/ may not have been done
fT3 ( free T3 / triiodothyronine) ~ result [lab range] ~ unlikely to have been done but useful if it has.
On reflection as it seems pretty certain I have auto-immune hypothyroidism, so I've opted for the (cheaper) MonitorMyHealth Full Health Screen. I'll post the results when I get them.
If I understand correctly you say I have to have a 24-hour break from Levothyroxine before the test? Does that mean at least 24-hours, or bang-on 24 hours?
take last dose about 24hrs before test , (don't leave it much longer eg 28/30 hrs is really a bit too long might give a false low fT4 result )
When you take a Levo tablet :
~ the T4 is all absorbed in one go from the gut within approx 1-2 hrs ( depend how fast your digestion is).
~ so the fT4 level in the the blood peaks all at once , and stays at that peak level giving a 'false high' between approx 2-6hrs after tablet ... (you don't want to test fT4 during the this peak , as it briefly looks much higher than the 'real' settled level)...
~ from about 6hrs after tablet to about 12 hrs , the fT4 level falls gradually (you don't want to test during this period either , the levels change too much making it hard to get comparable tests conditions for next test )
~ by 12 hrs after tablet, the fT4 level is 'more or less' back to it's settled level ,,, it probably doesn't change all that much between 12 hrs and 24hrs.
~ but for consistent test conditions the best method (assuming you usually take your levo first thing in the morning) ...is to always get early/ 9 a.m blood tests , and just wait till after the test to take that days dose of levo.
No idea why that took so many words .. lol .been a long bike ride , my brain is tired.
Hey everyone. Sorry it's taken a while to get the results. At first I was told they couldn't test because there wasn't enough blood (although there was!) and then they suddenyl appeared - weird.
On MonitorMyHealth, all thyroid levels have a green light. Does that mean my levels are good? I still have every low-thyroid symptom!
TSH level: Your result is 2.39 mu/L
FT4 level: Your result is 19.4 pmol/L
FT3 level: Your result is 4.8 pmol/L
Unfortunately they didn't do all the other tests - B12, folate, etc, frustrating! They're sending me a second test-kit for free.
Your TSH is a bit higher than is optimal for most people on levo . Show these recommendations to your GP and tell them your monitor my Health TSH result was 2.39 and ask for a trial increase in levo for a few moths to see if it improves your remaining hypo symptoms .
They don't know what effect a higher dose will have on your TSH unless they try it and since these recommendations all say 0.4 /0.5 - 2. 2.5 is best .. anything down to 0.4/ 0.5 is perfectly acceptable.
if you currently take 50mcg / day ,ask to try an increase to 75mcg / day.
GP may need to retest TSH for themselves befor offering an increase (depending on when thye last tested an dhwat that level whas then , (which is a bit daft since MMH is an NHS service using an NHS lab )..however itis what it is ....... if they do want to do a retest at GP .. MAKE SURE you get a blood test that is early a.m. other wise TSH level may look somewhat lower than MMH result and they may send you packing with out an increase.
Receptionist/ GP won't agree thyroid blood testing needs to have an early morning blood draw , and they like to keep those slots for tests that have to be 'fasting' ... so often the only way to get a 9 am blood slot for thyroid is to be "unable to attend a later appointment due to work commitments "
This may help your understanding : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish
p.s Tingling in feet can be a sign of low B vits think .. but i'm not good on advice about vit levels .. so see what replies you get from your new post with vit results on .
When I first came on the forum I suspected that my thyroid levels were way off. I’ve been experiencing all sorts of weird symptoms like tingling in my feet.
I guess I’m right I’m assuming that these levels wouldn’t explain that?
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