TSH in normal range but...

[Violet333]

Had some blood tests late December as a follow up from an ECG (no problems). In the little time I had with the GP I raised concerns about thyroid function (sister and brother both diagnosed hypo decades ago). I mentioned a number of symptoms. TSH (the only thyroid test done) came back at 3.1, no action required. Non HDL cholesterol raised and MCH at 32.2. To be tested again in three months, but doing the Thyroid UK checklist I was astonished at how many of the symptoms I have. Today I sent the list into the GP with a letter asking not to have to wait until the end of March as insomnia, digestive issues and weight gain in particular are concerning as well as raised cholesterol and blood pressure. So do they always go by test results alone?

[SlowDragon Administrator]

Welcome to the forum

Suggest you get full thyroid and vitamin testing done yourself including thyroid antibodies

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[Violet333 in reply to SlowDragon]

Thank you for your speedy reply and all the information. I am happy to have testing done privately, although have never gone private before. When I get the results I just take them to the GP and they take it from there?

[SlowDragon Administrator in reply to Violet333]

come back with new post once you get results

Members can advise on next steps

[Cornwaller]

Unfortunately many GPs seem to rely on blood tests alone and seem reluctant to diagnose on the basis of clinical symptoms. This is unfortunate and may be a combination of being legally defensive, time issues, lack of confidence or ability, poor training... who knows? It's unfortunate because we live our symptoms, we don't live the vagaries of a labs estimate of a sample of our blood - useful as this can be in refining a diagnosis and treatment plan.

[Violet333 in reply to Cornwaller]

Thanks for your reply. Certainly time is an issue. When I first went to the GP with my list of symptoms, I was dismissed with "haven't got time for a list". I persisted a little and she agreed it sounded pretty textbook but didn't take the list. Hence writing in. Also costs of the tests. And who knows the rules? Maybe no diagnosis without the back up of a test. I'm hoping I will get a call offering a full range of the thyroid tests as that wouldn't be a repeat of the test in December. I do feel very despondent about the whole thing. Would they accept the results of private tests?

[FancyPants54 in reply to Violet333]

Quite possibly not because they don't understand them. But you need to know what you are dealing with so that you can come up with a plan (with the help of the forum) to get treated if you need it. We can't do anything without that certainty. So don't think you are getting the tests for the GP. Think that you are getting them to empower you.

[Violet333 in reply to FancyPants54]

From your experience on the forum, do many people go down the route of private tests?

[FancyPants54 in reply to Violet333]

Almost all of us! Many of us have to self-treat our hypothyroidism because we can't get sorted out properly with our GP's and Endo's poor knowledge and practice. And to self-treat we are testing regularly.

It's easy and it gives you answers to argue with your GP about. But ultimately, if they won't help you, you might have to just help yourself. This is the site to get the knowledge and help from to enable you to be confident to do that.

[Violet333 in reply to FancyPants54]

OK, thanks! So you mean nutritionally and so on, and not going down the drug route? Was hoping private testing might speed up the process of diagnosis and then getting back into NHS treatment but it sounds a bit hit and miss depending on the GP's response. I've no idea how the NHS and private medicine work together. I've always had a touching faith in the NHS and to be honest, NHS Wales has been very good with other things.

[FancyPants54 in reply to Violet333]

No, I mean many of us have to buy our own thyroid medications. But we usually start out with a diagnosis and a time on Levothyroxine first, to see if we can feel well that way. For some it's a wonder drug. For others it fails to work well and that's where we deviate off the normal route and have to treat ourselves.

For now, you need a diagnosis and to try Levothyroxine. Having private tests now will show you where you really are in your journey and should give you the confidence to learn more and argue your corner with your GP when the time comes. I'm afraid you must forget having a "touching faith" in the NHS where thyroid issues are concerned. They just don't bother with us. So you can have the private test and get your antibodies tested and your FT3 and FT4 at the same time as TSH. Then in 3 months when it's time for the GP to retest you can compare your results and argue for treatment if there are signs of antibody activity, low T3 etc. Also, keep reminding them of your family thyroid history. It is very relevant.

[Violet333 in reply to FancyPants54]

Thank you for this, very helpful. I assumed Levothyroxine was prescription only. I have a lot to learn!

[helvella Administrator in reply to Violet333]

Levothyroxine most certainly is prescription-only in the UK.

However there are routes by which it can be obtained (legally) from elsewhere.

[tattybogle in reply to Violet333]

NHS thyroid diagnosis/ treatment guideline:

before considering treatment for hypothyroidism NHS GP's need to have evidence of :

~ TWO (consequtive) over-range TSH results .. taken 3 months apart (to rule out temporary 'non thyroidal' issues that affect TSH / fT4/ fT3 levels ) ~ Your TSH is not over range (yet ). and having had a recent TSH result that is in-range the NHS lab will probably not permit a repeat TSH test for 3 months , even if a GP asks for one .

~ symptoms of hypothyroidism .

(~raised thyroid autoantibodies (TPOab) will help convince them to start Levoroxine if TSH is "over-range but still under 10".

The can ask for TPOab test after getting TSH that is over- range. (they are unlikely to be wiling to test TPOab while TSH is still in range .

Here is the current guideline nice.org.uk/guidance/ng145

(*note ~'sub clinical hypothyroidism' means ~TSH over lab reference range while fT4 is stil within reference range)

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

~~~~~~~~~~~~~~~~~~~~~~

NHS GP's are NOT 'recommended' (not allowed) to prescribe LEVO based ONLY on symptoms of hypothyroidism without ALSO having evidence of raised TSH.

(unless the diagnosis is Central/ Secondary hypothyroidism (pituitary / hypothalamus problem) where the TSH is unable to rise in response to low T4 levels ~it can be missed if only TSH is tested ~ but if suspected the patient is first referred to endocrinology in order to test all the other pituitary hormones )

[Violet333 in reply to tattybogle]

Thank you very much for this. One slight glimmer of hope is that I've only been tested for TSH and not T4 and T3 as the GP asked for a range of general tests following through on chest pain and not focussing on thyroid. Otherwise I can see the 'recommendation' means I won't get tested again until the end of March and then three months later to confirm. Sigh. Do I take it, then, that even getting a private test won't nudge things along and that I'd need two private tests three months apart anyway?

[tattybogle in reply to Violet333]

private testing is useful it allows you to see TSH /fT4 AND fT3 all together and find out if you have antibodies. and to check vitamins B12 /D ferritin / folate .

NHS often only test TSH, unless TSH is out of range (some areas routinely test fT4 ,some areas the lab wont let them test T4 if TSH is in range)

GP's are unable to order fT3 tests on NHS, (well hardly ever ,and even if they eventually do get it done ,the lab might not do fT4)

So all in all, its just much easier to get TSH /fT4 /fT3 done together for under £30 by NHS service Monitor My Health .. (or whoever else is most economical if vits are wanted too).

if you present private results to GP. they may or may not give them any credibility , (this is why using MMH is useful as it's done at an NHS lab in Exeter)... but even if they do believe then ... they would still have to retest to confirm the findings using their own lab . ( for all they know, it's not even your own blood you sent off to a private lab)

and regardless of who does the testing ..... the 3 month gap to confirm the first over range TSH result STILL applies because they ALWAYS have to rule out 'Non Thyroidal Illness Syndrome' before making a diagnosis based on TSH or fT4 or fT3 levels.

( they all go really wonky for a while in severe /acute illness,.. and lots of other things can affect them too..... so they need to see a consistently raised TSH over several months to indicate a problem with the thyroid itself and not just a problem with 'something else' that caused temporary wobble in thyroid hormone levels) .

If you get your own done , then you would get an idea of autoimmunity before they did . but they still wont treat unless TSH is over range x 2.

If your GP hasn't done fT4 , private test would mean you see a below range T4 before them ...and would get them to confirm low fT4 for themselves . but if that is the case, be warned ~getting a diagnosis for Central/ hypo can take (literally) years.. it's a pretty rare condition.

(or at least the NHS believe it is.... it's probably nowhere near as rare at they think . and "only testing TSH" is an idiotic policy which is just asking to 'miss' it ,, but there you go)

Getting Vit's done means you can start to improve those by yourself which may help how you feel anyway .And in some cases according to admin on here low vits are sort of 'masking' hypothyroidism, and when corrected, the TSH rises, sort of revealing it... ish ..( low vit's are 'above my pay grade' lol).