Need help with test results please

Hi,. I am new to this site but have been convinced that I have underactive thyroid for the last 3-4 years but my GP insists that my previous results were "normal". I feel extremely depresssed most of the time for absolutely no reason, sleep like the dead and then get up feeling as if I could lay down again, my nails (previously my pride & joy!) are flaking and peeling, my hair is brittle, etc, etc. Most days I feel as if I want to burst into tears but can't and don't, it's just a feeling. Of the symptoms on the Thyroid.org website, I can relate to approx half in varying degrees

I am seeing my GP again tomorrow for the results of the latest blood tests but am dreading being told once again that there's nothing wrong with me. 3 months ago, my TSH was 1.2 mU/L (0.35-5.0), nothing thyroid related was tested but in 2013 I had a private test done and the results were:-

TSH 1.29 mIU/L (0.27-4.2)

Free thyroxine 11.2 pmo l/l. (12.0-22.0)

Free T3 4.2 pmol/l (3.1-6.8)

Can anyone interprete these and tell me if I am completely wrong about my thyroid or if I really am just a lazy, moaning, miserable person which is how I'm starting to feel.

Btw, I've been on antidepressants for about 2 years and mostly, they don't help.

I would really appreciate comments from you kind people out there. Thanks xx

8 Replies

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  • I would suspect you have secondary or tertiary hypothyroidism, rather than primary hypothyroidism. Secondary and tertiary hypothyroidism are collectively known as central hypothyroidism.

    The hypothalamus responds to insufficient thyroid hormone in the brain by producing TRH (Thyrotropin Releasing Hormone). If the hypothalamus produces insufficient TRH this is known as tertiary hypothyroidism.

    The pituitary responds to TRH by producing TSH (Thyroid Stimulating Hormone, also known to doctors as Thyrotropin). If the pituitary produces insufficient TSH this is known as secondary hypothyroidism.

    The thyroid responds to TSH by producing thyroid hormones. If the thyroid produces insufficient thyroid hormones this is known as primary hypothyroidism.

    Primary hypothyroidism is most common. Secondary is less common, and tertiary is deemed to be rare. One reason for rarity might be that secondary and tertiary hypothyroidism are rarely tested for.

    The treatment for all the types of hypothyroidism is the same - supplementary thyroid hormones (specifically levothyroxine) to make up the deficit. There are other thyroid hormone products available besides levothyroxine for treating hypothyroidism but the NHS almost never prescribes them.

    You need to go back to your doctor and show him/her your private results. He/she should treat you, but might insist on you seeing an endocrinologist first. What they should do and what they do do are often two different things though, you'll have to let us know what happens. It is possible to self-medicate by buying thyroid meds online. You would need to know what to buy and where from though - so ask for advice if this becomes necessary - but hopefully it won't.

    Doctors are used to treating hypothyroidism based on levels of TSH. If you have central hypothyroidism doctors won't be able to use TSH to monitor your levels. They will hate that. But you have to stick to your guns. You can't just be ignored.

  • Thank you so much for responding- so maybe it isn't all in my mind, thank goodness!! I feel totally bewildered now 😳

    My (different) GP saw the private results 3 years ago and dismissed them. At the time, my main problem was chronic constipation along with everything else, which seemed to be taking over my life; I saw a private gastro consultant who prescribed something which surprisingly- even to him- worked and has worked ever since. The private test was not done by him but suggested by my then GP.

    Is it ok if I print out your reply above and asked my doctor to at least consider your suggestion?

    Thanks again x

  • Be my guest. :)

    Some doctors might not be happy about the references to self-medicating, so be warned, and be prepared for a possible explosion!

  • I'll try to sit well back 😬

  • Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    (NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

    You do not need to have ANY obvious gut issues, to have poor nutrient absorption - this may be duck to low stomach acid or gluten intolerance both of which can lead to low vitamin levels, meaning your thyroid hormones can not work - but standard thyroid tests come back "normal"

    What's your diet like? Do you have any digestive issues?

  • Hello Slowdragon! I am not sure what the recent tests were for although I will find out tomorrow morning - I've already had a letter from the surgery to say that results were normal but one thing needs checking and the test can be repeated in 3 months!!!

    I like to think my diet is reasonably good - I have had soya milk for years as I find it gives me much less wind! I have also recently been having gluten-free bread for the same reason.

    As I said in a previous post, until 2or so years ago I had chronic constipation - no pain, just did not go. I now take a medication called prucalopride daily and I am normal..

    I'm a bit nervous about seeing the GP tomorrow so won't hold my breath that comments will be much different to previous ones.

    Thanks again for reply x

  • Look for posts by greygoose on the subject of soya. It isn't very good for us!

    Also, take a look at this post on another forum :

    forums.phoenixrising.me/ind...

    It gives lots of reasons why thyroid symptoms may occur while blood tests are (allegedly) normal.

  • So ........ as expected, nothing wrong with me .... aaaaargh!!!!! My GP was very sympathetic (her words) but cannot prescribe based on the current results (again, her words). I did point out that she could treat the symptoms but she still insisted not. I told her that intended to self-medicate which didn't go down very well but I felt she was on my side somewhat. Said I wasn't prepared to go on like this any longer because the weak, indecisive, unconfident (?) person I am now is just not me at all 🤔.

    We agreed that I would again get a private blood test done because the lab didn't test T3 & T4 levels as my TSH was "in range". I'm having that done tomorrow so should have the results back by early next week and then decide whether to see the GP again or make a private appointment with a private endocrinologist BUT I'm open to any other suggestions and advice from out there. My results were:-

    TSH = 1 mU/L. (0.35-5.0)

    Serum thyroid peroxidase antibody concentration = 6 lU/mL. (0-50)

    Vit D level = 74 nmol/L. no range but says Low status may be adequate or borderline

    Random cortisol (not before 9am = 138 nmol/L. (9am 140-690)

    Lots of other bits but I really don't know which are relevant.

    I would so glad for any advice - I can't even drown my sorrows because for the last few months, anything more than a very small glass of wine makes me feel like ***t the next day!

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