Hi there, I’m a newbie and looking for some advice. I had a blood test 9 months ago which showed my TSH was borderline. I’ve had two more repeats and they have all been elevated. Latest results are:
Serum TSH level 6.06 mu/L [0.35 - 4.94]
Above high reference limit
Serum free T4 level 9.6 pmol/L [7.5 - 21.1]
I’m struggling to find a diagnosis for how I feel, two stone weight gain in a year (given up choc for lent and I eat well and not lost an ounce). I fall asleep at the drop of a hat and despite only being 54 I struggle to function with aches and pains. At what point does a GP consider prescribing a thyroid treatment as currently my record shows they won’t repeat my bloods for a year. Other medical condition is Collagenous Colitis for which I take Entocort steroids. I look forward to your advice. Many thanks. Lesa. X
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1967rosebud
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I'm afraid the answer to your question is not very encouraging. The NHS is a bunch of sadists! And, despite the so-called 'normal' range - which isn't really 'normal' at all! - they like to wait until your TSH goes over 10 before they will diagnose and treat hypothyroidism. It's rediculous, I know - especially as you are technically hypo when your TSH gets to 3, and in some countries you would be treated at that point - but that's the way it is. And you wonder why they even bother to have a range!
Having said that, have you ever had your antibodies tested? Because if you have high antibody levels - meaning that you have Autoimmune Thyroiditis - and an over-range TSH on two consecutive tests, they are supposed to start treatment.
If your doctor won't test antibodies - and they often won't, because they don't understand what it means - there are private tests ou can do that don't involve a doctor. Details of private testing here:
Thank you so much for your reply greygoose! I agree and I don’t understand why they have a range <4.94 and don’t treat when you go over it! I did have an antibody test, is this the one? It was negative though:Antinuclear antibody:
No, that's not the antibody test I meant. That one is non-specific. What you need are TPO antibodies tested - and, if possible, Tg antibodies. They are the specific antibody tests for Autoimmune Thyroiditis.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high TPO or high TG 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.
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 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
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."
Ask GP to test your thyroid autoantibodies ~TPOab (Thyroid Peroxidase antibodies) if they have not already done so.
You already have 'two over range TSH tests 3 moths apart' , so if you have symptoms of hypothyroidism , then they 'can consider' a trial of Levo now .
Having positive TPOab's would make it more likely that they would consider a trial of Levo sooner rather than later, but it is not an absolute requirement ( positive TPOab shows them there is an autoimmune cause for the hypothyroidism and let's them know it is likely to get worse over time.. so they are much more confident that the raised TSH is not just temporary and are more willing to start what is usually a lifelong treatment with Levo).
Symptoms of hypothyroidism are often a bit non specific , and are very easy for GP's to put down to 'something else', (weight gain is possibly hypothyroidism , but could also be 'x,y/z ' ,as could your falling asleep etc .... but if you have a lot of symptoms that are typical of hypothyroidism and you have a TSH of 6 .. then it's a reasonable assumption that some of them are symptoms of hypothyroidism.... so , make list of all your symptoms that fit the typical hypothyroid picture , and state how severely they are affecting you daily functioning... and give it to your GP when asking for the TPOab test.
NHS do sometimes treat when TSH is below 10 .. especially if the TSH is showing a trend of rising over time, and symptoms are having a serious impact on daily function.
I was treated (after going to the GP repeatedly for symptoms over many months) with TSH being 5.7 rising to 6.8 and TotalT4 falling from 94 tp 91 [65-155]
However my TPOab were extremely high .. which probably made the difference in their decision to treat. If my TPOab had been normal i'm sure i would have been told to 'go away and come back next year.'
I was pretty much a zombie with subclinical results of TSH 6.8 and TT4 in range... so you have my sympathy.
Keep being a nuisance ..... and make them test your TPOab now ,not next year .
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