Help with test results TSH 11 / T4 1.01

Hello! I've just joined HealthUnlocked recommended by a few friends. I've treated for underactive thyroid for about 19 years. Currently on Thyroxin/Eutirox 100.

This last summer i felt absolutely exhausted, awful mood swings and even though GP tested me for anything, it all came out ok. I tried to be referred to a specialist but they wouldn't do it as my test results were within normal parameters. I was in Spain recently and had some blood tests done over there as didn't feel well. My TSH levels are at 11 and T4 is at 1.01. They told me I would probably need my meds increased :(

I'm going to try to get an appointment with my GP to see if they can look into it, but can someone help me understand what those values mean? I'm so tired of going to the doctor and being told i'm ok when I don't feel well. I'm hoping this time bringing a copy of those tests might help me a bit more.

If anybody has any thoughts/advice I would be very grateful - thank you very much!

14 Replies

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  • BB8-Btn Do you have the reference ranges for those results? Without them they'll mean nothing to your doctor.

    This is an example of what they would look like if done at a popular private lab here - it won't be the range the Spanish lab used but it will help explain how to interpret the tests

    TSH: 11 (0.2-4.2) -

    This would show that your TSH is over range. The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

    FT4: 1.01 (12-22) -

    This would show that your FT4 is below range and it needs to be in the upper part of the range. But be aware that the range for the Spanish test may be very much lower so, as I said, without the ranges your results can't be interpreted.

    If you're going to ask your GP to do up to date tests then ask for:

    TSH

    FT4

    FT3

    TPO antibodies

    TG antibodies

    Vit D

    B12

    Folate

    Ferritin

    He may not be able to do them all, if so we can tell you where to get a private fingerprick test to do at home. It's important for vitamins and minerals to be at optimal levels for thyroid hormone to work properly. Testing antibodies is important to rule out (or in) autoimmune thyroid disease aka Hashimoto's.

    For all thyroid tests always book the first appointment of the day, fast overnight (water only) and leave off your thyroid meds for 24 hours, take them after the test.

  • Hi SeasideSusie - thank you so much for your prompt reply. I'm really grateful.

    Yes, I have the reference ranges, they are:

    TSH 11,00 [0,35 - 5,5]

    T4 1,01 [0,8-1,8]

    Thank you for being so helpful :)

  • Crikey!! There's no doubt about you 'may need your meds increased", you very definitely do need an increase. Your TSH is way to high. Increases should be in 25mcg increments, re-testing 6-8 weeks after the increase to check levels, another 25mcg increase, another re-test, etc, until your symptoms abate and you feel well.

    In the range quoted your FT4 should be nearer 1.47+ but your TSH should be sending out shock waves to your GP!

  • Hi Susie, hope you're doing ok!

    I'm interested in buying one of those fingerprick test to do at home, can you recommend anywhere to buy them? Thank you! Blanca

  • Hi BB8-Btn Did you get your increase in dose?

    Check out the following, it's Thyroid UK's testing page with links to companies used by members. I've used Blue Horizon and Medichecks, both equally good and they use accredited labs to process the tests. Blue Horizon has a guide about how to do the fingerprick test. At the moment, until 24th March, Medichecks have a discount of 15% using the code you'll see on their link

    thyroiduk.org.uk/tuk/testin...

  • Hello!

    Yes, I'm on 125 thyroxin and feel a tiny bit better. Having my results back next week, so see what they say. Thank you very much for all your help!

  • Welcome to our forum and I'm sure our members will assist you in getting well.

    After 20 years on levothyroxine you should be on an optimum of levothyroxine, which you are obviously not as your TSH is so high - on treatment we should have a TSH of 1 or lower and some need it suppressed.

    You need an increase desperately. Your heart and other essential things in our bodies need liothyronine to work efficiently. Liothyronine is the hormone T3 and levothyroxine is T4, so T4 has to convert to sufficient T3 in order for our bodies to run normally and we feel well.

    SeasideSusie has given good advice and post your results, with the ranges for comments.

  • Thank you for being so helpful. I'm totally with you, I was quite shocked to see such high levels of TSH, especially being medicated for so long.

    If my meds need to be revised what would you suggest?

    Thanks again!

  • The norm is 25mcg increases every six weeks until you feel normal health with no clinical symptoms until TSH is around 1.

    Levo should be taken either first thing on an empty stomach with one full glass of water and wait about an hour before eating. Or at bedtime, as long as you've last eaten about 3 hours before. Allow 24 hours between last dose of levo and test but if bedtime dosing, miss this and take after test and at night as usual (on the same day).

    If you've not had B12, Vit D, iron, ferritin and folate taken ask for these too as we can be deficient.

  • Ok, will do, thank you!

    How do you feel about natural dessicated, is it any good? I've heard people also buy T3, is that advisable?

  • Different meds suit different people. Over the years I've had Levo alone, NDT, NDT plus T3, T3 alone and am now settled on a combination of Levo plus T3 but still trying to find my optimal dose.

    You need your FT4 and FT3 done at the same blood draw to see how well you are converting. When you have those it will indicate whether Levo alone is OK (conversion would be showing as good) or if conversion isn't good you could add some T3 or try NDT. NDT has a fixed amount of both T4 and T3 (usually 38mcg T4 and 9 mcg T3) in every 1 grain tablet. Combining Levo and T3 gives more flexibility of the ratio if NDT isn't right for you.

  • Thank you so much lovely, much appreciated.

  • I was awful on levothyroxine and due to the fact that in the UK once diagnosed, we will get all other prescriptions, for any other conditions free If you go down the natural dessicated road, you will have to pay for all of your hormones for the rest of your life. Some doctors may prescribe them on a 'named-patient' basis which would be good but due to the fact that the 'Associations' have made False Statements about NDT, most are frightened they lose their livelihoods.

    I'd askyour Endo for the addition of T3 (again they are stopping prescribing due to the now exhorbitant cost). You could source your own T3 and you'd have to put up a new post asking for A Private Message to be sent to you of info of where to source.

    I found a great benefit when T3 was added to T4.

  • Suggest you read a few books on the subject : Thyroid for Dummies is a good start point despite the title and being a little out of date.Also look at Thyroid UK website and Patient Thyroid Advocacy.

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