18 years on T4...and feeling rubbish

Hi all,

New to site and looking for guidance.

I was 'accidentally' diagnosed with hypothyroidism aged 28 are locum gp order range of blood tests to do witn menstral problems ( i could rant about it taking 4 months for me to find out from a gyneacologist...).

I started out at 16st on 50mcgs of Levothyroxine and here i am 18 years later weighing 20st and on 250mcgs levothyroxine. (I'm not lazy...for lent i set myself the challenge of walking 120 miles in 6 weeks and i walked 140).

The bottom line is i feel awful. I appreciate my weight plays part of that...but i can't think straight, i'm forgetful and confused. I have lots of the symptoms of 'hypothyroisism' despite the dose of medication i am on.

What indicators should i be looking for to evaluate whether my t4-t3 conversion is 'off'?

All help gratefully received x

18 Replies

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  • HDub Welcome, sorry you are feeling so awful.

    That's quite a big dose of Levo to still be feeling so bad, it could be that something is preventing it from being absorbed.

    Do you have your latest thyroid test results to share? Please post them, with reference ranges, for members to comment.

    It would be best to have the following for a complete picture:

    TSH

    FT4

    FT3

    Thyroid Peroxidase antibodies

    Thyroglobulin antibodies

    Vit D

    B12

    Folate

    Ferritin

    If vitamins and minerals aren't at optimal levels then thyroid hormone can't work properly.

    If you can't get those done with your GP then we can point you in the right direction to do them with a home fingerprick blood test.

    Do you take any other medication? Or supplements? Some can affect absorption of Levo.

  • Thank you for replying.

    I don't have my latest test results...my last blood test was about 5-6months ago.

    I am booked to see my gp this week and plan on asking for a full thyroid panel including reverse t3...

    ...but i guess i just worry that i'm being a hypochondriac.

    I take vitamin b12 and a vegetarian cod liver oil equivalent...neither at the same time as my levothyroxine. I take my levo at night before bed on an empty stomach.

    I have a good relationship (aka we are very direct with each other) so i'm hoping he'll take my concerns seriously....because i cannot function like this anymore.

    😢

  • HDub I think you're unlikely to get reverse T3 tested, in fact your GP probably won't know anything about it. I don't think the NHS does it. I'd be very surprised if you managed to get FT3 tested. TPO antibodies are sometimes (but rarely) done by the NHS and TG almost never. But see what you can get and we'll go from there.

    When having a thyroid test, always book the very first appointment of the morning, fast overnight (you can have water) and leave off Levo for 24 hours (as you take yours at night, you might want to adjust timing and get as close to 24 hours as possible).

    Ask for a print out of your test results and ensure the reference ranges are included. We are legally entitled to them under the Data Protection Act 1998.

  • Recent research from several research studies show that most benefit with a T4/T3 combination. Many feel an improvement. Just recently the decision by the 'wise' decided to withdraw T3 putting many into a panic who cannot get well on levothyroxine alone. The cost of T3 became extortionate but there are other two T3s which could be prescribed but there seems to be a blanket ban. They could also have put their foot down about the extortionate cost.

    After 18 years of being hypo and still with clinical symptoms and feeling rubbish, you have to read, learn, and ask questions from members of the forum. Many seem to do fine on levothyroxine but few are on this forum.

    First, I'd advise you to ask GP for a Full Thyroid Function Test (he might not know what this entails) and say you've had advice from the NHS Choices Thyroiduk.org.uk. Ask for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (you may already have had antibodies checked, if so you don't need this one.

    Also request Vitamin b12, vit D, iron, ferritin and folate and these should be optimal. If not we also get symptoms of deficiencies.

    The test should be the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. This helps keep the TSH at its highest as it drops throughout the day and may mean the doctor adjusts dose unnecessarily.

    If GP (or lab sometimes) doesn't do all of them you can get a private test from a recommended lab and TUK has a list.

    Always get a print-out of your results with the ranges and post for comments.

    This is a list of symptoms which, with proper dose and proper thyroid hormone replacement should all be relieved.

    thyroiduk.org.uk/tuk/about_...

    Although people feel bad with unexplained weight gain and if hypothyroid they can do themselves no favours by exercising more than gentle exercise. The reason being - if hypothyroid we are prescribed T4 (levothyroxine). This in turn should convert to T3 (liothyronine) the only active thyroid hormone that is required in the billions of receptor cells in our body and the brain contains the most and if on insufficient dose of levo exercuse can reduce the T3 so we cannot have enoughto do its job of raising or metabolism.

    I am not medically qualified and the above may not be 'exact' but it is more or less correct, i.e. we need T3. Does the doctor ever test T3 or Free T3 or Free T4, I doubt it. The guidelines, as far as I know only are interested in the TSH and T4.

    Many members have got much better either with taking (buying their own NDT ) although this used to be prescribed widely and maybe they should introduce this back to replace T3 which has been withdrawn. That would be much simpler, I think.

    Some have a defective gene DI02 which means they cannot convert levothyroxine to T3 so remain ill.

  • Hi HDub

    I was like you, on t4 only - for 20yrs, after trying to get a diagnosis for over a decade beforehand. T4 had no effect - I kept telling gp's but kept getting fobbed off. I tried reading everything I could, don't admit to understanding half of it, but got a good gist. TUK have a lot of advice and info to offer. And then I discovered Dr P's book - made an awful lot of sense - like reading my life story! (Was like Eamon Andrews and his Little Red book!) Written in a way to make if more easily understood by all, not just medics. A great starting point. I got mine through TUK - and need to order another, my 4th, as keep lending them out....

    My weight shot up too - especially after 2nd child. (I lost weight with the 1st - dr was v surprised) CF/Fibr/Migraines etc...developed and worsened over the years.

    We end up telling ourselves that it is just us, that we are being paranoid, over reacting to symptoms, that maybe it is just 'normal' to be like that. And we should just get on with it. But I know I am not alone in that in the end I had to give up my job. I was so wiped out. At that point I went to see Dr P himself. Wished I'd done it years before!!

    You will get no end of good advice and support on this forum.

    I wish you well.

  • I'm doing loads of reading around the site...

    Are you now on T3? If so did it make a noticeable difference?

    To be frank - i can live with my weight...but i can't live witb the forgetfulness and foggy thinking. It's really distressing

  • Hi HDub Yes i am on t3 only for about 7 years now, it made a huge difference, once I got the adrenal back working better and found the right dose. (Was on 60,cg t3 up until last year - gp knocked it back to 50, as was slightly over prescribed, but i suspect that was due to adrenals being low again) Due blood tests this month, will see how things are.

    A few years ago I joined slimming world and lost 4st without any real effort, in 11 months. (I am aware that people who know much more, and better than I, on here, would not advice SW, as it is low carb/fat - and I understand where they are coming from. I didn't know this when I went in that direction) I think I managed to lose so easily 'because' my meds were settled and balanced at the time and had been for a couple of years. (I have also put some weight back on, but I know the reasons for this - some of which I suspect has been due to low adrenals again - so hopeful that, soon, I will be able to get back on track weight wise too)

    As you say -the other symptoms and causes need sorting as a priority. It is the brain fog and fatigue and such that are more debilitating, cause us to give up jobs and such! (unfortunately GP's and others see our weight and feel justified in blaming everything on that!)

  • May i ask what the issue with your adrenals are?

    Re diet...i'm a non-cheese eating veggie. I dont do takeaway or fried food but am a sucker for bread. Not entirely sure what i could cut out!

    I get my b12 via fortified nutritional yeast (it's far nicer than it sounds) but i do supplement it anyway.

  • HDub You may ask...I'm a great believer in sharing our experiences, as it may just help ourselves and others.

    So, as I understand it, I was on t4, I can't remember how much in end, was 175 - 225, kept altering dose up/down -

    I knew my adrenals were struggling, if someone so much as said 'boo' to me I would be shaking like a leaf. Panic attacks, couldn't cope with heights etc...my t4 levels were high. I had all sorts of aches, pains etc... Saw an osteopath, who said she thought it was my secondary nervous system, when I asked her what she meant she said adrenals, I told her I thought the same, this was just before I saw Dr P.

    Apparently, if your adrenals are compromised, a knock on effect of misdiagnosis/treatment, it slows your metabolism even further, making it harder for your system to take up, convert and use your medication.

    Adrenals have to be in good working order before you can get your thyroid in order.

    I tried several times to reintroduce t4, but each time the symptoms would return within just a couple of days.

    Dr P explained it that the enzyme that converts t4 to t3, was not kicking back in and working for me, probably because of the time involved.

    The more anyone tries to 'diet' etc when the thyroid/adrenals are under par, the less likely they will succeed and will probably only slow metabolism further - vicious circle. Or so I have read on many occasions.

    I'm no expert by any means, I've tried to read around anything I can find to do with thyroid, for many years that amounted to a very small booklet, sold in chemists, speeling the NHS/BMC basic rubbish they still force on us today....

    If you can, post any test results and there will be people on here who understand the implications far better than I (and in many cases tonnes better than most GP's!) And will be able to advise you further.

  • Just wondering if you've had your B12 levels tested Hdub and UrsaP?

    yeast does not provide a good source of B12 for vegetarians and may, in fact, make it harder to absorb it (see link below).

    Low B12 eventually causes serious neurological symptoms that need urgent treatment. Very few GPs have read latest research and often misdiagnose CFS/ME/Fibromyalgia.

    Don't supplement before testing, as this will skew results and make it harder to get treatment:

    b12deficiency.info/vegetari...

    b12deficiency.info/signs-an...

  • Hi,

    It's something called nutritional yeast i take - and it's fortified with b12.

    It's not the kind of yeast used in breadmaking 😊

    I'll be asking the doc to do all the blood tests suggested.

    😊

  • "It is vital to understand that there are no useful plant sources of B12. The foods listed below contain B12 analogues. This is false B12 and does not act as vitamin B12 in your body...

    Seaweed

    Fermented soy

    Spirulina

    Brewers yeast

    These analogues (cobamides) can interfere with absorption of true vitamin B12 and disrupt B12 metabolism. Those who choose not to take vitamin B12 from fortified foods or supplements are at high risk of vitamin B12 deficiency, which can cause serious, long-term and irreversible health problems.

    Children and pregnant women are at an even higher risk due to their greater need for this vitamin.

    Warning - vegans and vegetarians who eat foods fortified with B12 and supplement orally could still be at risk of B12 deficiency for many reasons."

  • Hi Polaris, I do take a vit b12 supplement, just in tablet form. I only take a little bit, as one time, when I had a blood test done, it looked like there was too much in the system, and I think I read somewhere that excess should not remain in the system? But it obviously did. Can you recommend a decent B12 vitamin? If so can you PM me please? Thanks

  • Will PM you with the sublingual lozenges I've found effective. Many people find oral & nasal sprays, or patches work for them. However, injections are the way to go to treat neurological symptoms.

  • Reading your comment and specifically:-

    "CF/Fibr/Migraines"

    This is a link which I think will help you. In fact if you have Fibro it can be caused by Resistance to thyroid hormones and only T3 will be able to relieve your symptoms.

    Dr Lowe died so his site is now archived and some links within may not work.

    web.archive.org/web/2010103...

  • Hi shaws Thank you for the link. I did look at Dr Lowe's site last week, regarding Fibro etc... I am on T3 only as I didn't do well at all on T4. T4 Toxic. I saw Dr P a few years ago - adrenals were also struggling by then, he helped get me on track. Still have blips when life kicks off, but on whole much better. Just getting arthritic problems raising head now, adrenals have been low lately and may be linked to that.

  • I went to GP waving NHS book re Thyroid and referencing this website, and was allowed all of the blood tests that the NHS would offer. My husband also got the practice manager to agree to take blood at the same time for my private tests so that it made it easier to do a comprehensive set of tests in one go. If you have a good relationship they may allow this as having blood taken by someone competent can make private testing easier/cheaper.

  • The only way in Australia is having a Thyroflex test done to establish if you are unbalanced in T4 to T3 conversion, has only been available here 3-4 years so I am just at the begining of the journey, has been available in US for longer maybe 5-6 years, I dont know if my journey with new clinic will produce results for me but am so desperate due to weight gain i will give it a go. I am having various tests done and will follow advice from Lucy Rose clinic in Sydney for next few months to see if i get results, have been taking Oroxine for 27 years since my mid 30's have gone from 65 kilos to 95 kilos, no diets or fitness works for me, therefore this is my last hope. Will post results for next section of the journey.

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