Still feeling unwell and thyroid is normal while taking thyroxine

I have always struggled with tiredness and feeling dizzy. When I was around 17 years old I was told my thyroid was slightly under active but the doctor never did anything about it and told me it was nothing to worry about. I spent years going to the doctors as I always felt ill but was always told that they couldn't see anything wrong with me and didn't realise what hypothyroidism was so never questioned the original diagnosis.

I had blood tests again at the age of 28 and was told I had hypothyroidism and was put on thyroxine. I have been on it now for a couple of years but still feel tired and dizzy. I was under the impression that if your thyroid levels were coming back as normal when taking thyroxine for two years that the symptoms should have gone away. I've been to the doctors again explaining that I still feel unwell but they don't know what's wrong with me and say its nothing serious. I also came off the pill last year and have felt even worse since with nausea, acne and the dizziness sometimes effects my eyes. I have recently been told I have PCOS and high LH levels and I think the pill has been masking this. I have a basal body temperature of 34 degrees too.

Is it still possible to have the tiredness and dizziness even when your thyroid levels are normal? Could having this condition but being untreated for so long mean it takes more than two years to feel better? I know nobody here is a doctor but my GP isn't helping at the moment so i'm wondering if anyone else has similar problems. I'm thinking of changing doctors to get a second opinion because i'm fed up of feeling ill all the time and i'm such a happy positive person normally so nobody takes me seriously.

12 Replies

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  • Welcome to our Forum

    The first thing to realise is that 'normal range' for GP's does not mean normal health always for hypo sufferers.

    Some people have been ill for more than 20 years,

    You will have to read and learn as much about hypothyroidism as possible as it affects every single cell in your body and that's why we feel so ill.

    Get a copy of your latest thyroid gland blood tests from your GP, and if you haven't had one recently get another plus B12, Vit D, ferritin, folate and iron and post them here complete with the ranges (figures in brackets) as labs differ and it makes it easier for members to comment upon them.

    It is possible to improve our health but it is trial and error and sometimes just a raise in your meds can make a big difference.

    We are trying to change mindsets and this is a link which you may find helpful.

    scottish.parliament.uk/news...

  • Thank you so much for this. I've just watched the video you sent and it made me very emotional. I had no idea of the issues with thyroid hormones. Something also clicked with me. I have always said that when I eat I don't feel like I am getting energy from my food. I go to the gym and I always feel like i'm going to collapse through lack of energy. I have never heard anyone else say this before and they mention about food not being converted into energy in the video. I've been telling my doctor this for ages! Do you have any suggestions for private health care? Or do you know where I can go and pay for further tests in the north west?

  • I've never actually been given any details of my blood tests just told if they are okay or not okay. I'm relieved in a way that these symptoms can persist after taking medication because I'm getting to the point where I feel like the doctor thinks I'm a hyprochondriact and I was starting to think that I was imagining feeling ill (or at least that's what my gp makes me feel like). I will try and get more information about my blood tests from the surgery. I'll also have a look at the link you sent. Thank you for your help, I'm finding this forum very useful.

  • Being treated as if you were a hypochondriac is common amongst our members.

    Each time, from now on always get a copy of your blood tests to keep for your own records. I never did this before I got hypothyroidism but it is vital for us to know what is going on in our own bodies.

    Ask your surgery for a copy of your thyroid gland blood tests, some receptionists ask the GP but we are entitled to them and they cannot refuse.

    If you email louise.warvill@thyroiduk.org, and ask for a copy of sympathetic doctors (private) or Endocrinologist (NHS) you can choose whichever is nearer.

  • Thank you for your help. I've just contacted her and she's sent me the list :-)

  • I feel exactly the same. I have had hypothyroidism for around 12 months now and am still trying to feel well even though recently my blood tests have fallen into normal range. My TSH has even been as low as 1.18 and I felt worse than when it was at 7!!.

    I have recently visited my 2nd endo appointment and was also told there was nothing seriously wrong with me and they couldnt understand why I have constant anxiety, tiredness and generally feeling rubbish.

    Over the last few days I have also started to feel dizzy with a strange feeling in my head - not quite a headache but very similar.

    Just wanted to say you are not on your own and you have to keep persevering - only you know if you feel wrong and of course you wouldn't be making it up - who wants to keep sitting in the doctors every week feeling rubbish and not being able to get on with life.

    I have found this forum very useful for advice and whilst I am still early in the start of my problems there are some lovely people on here who can help and hopefully make you feel better.

  • I felt so much better today knowing that i'm not the only one. This really helps, thanks. I think I've inherited hypothyroidism as my Mother and grandmother have it too.

    I've had the dizziness since I can remember on and off. What I noticed is that I suffered with severe dizziness and fainting in my teenage years and it went away for a long time and I started to sleep better it all came back recently over the last 12 months. I'm wondering whether taking the pill suppressed some of my hormones as I came off it about a year ago too. I've always had some dizziness though and I always feel tired.

    Considering you've only known about it 12 months you have been a lot more pro-active than me about finding out more. I'm very trusting and have always taken what my doctors have said in the past as set in stone. I think I need to listen to my body for a change.

    I hope you start to feel better soon.

  • Hi PinkPalmTree - I too have suffered really badly with dizziness/vertigo, anxiety and headaches. Unfortunatley thyroxine never made me feel any better, so I decided to try an alternative. For me this has made all of the difference. I am now taking Armour thyroid (dessicated pig thyroid), which contains T3 as well as T4. My symptoms are so much better - vertigo/anxiety have completely gone and my headaches loads better. Lots of doctors won't prescribe it, but I found an endo who would and now my GP is prescribing it for me as he can see the massive improvement. I wonder if you need some T3 too, but first, as the others said, we need to see your blood test results, as it maybe that you just need an increase in thyroxine.

    Clare xx

  • I was told nine months ago that I had hypothyroidism, although I have had symptoms for years and years. I was started on 25mcg Levothyroxine. My TSH came back in the normal range, but I didn't feel any better - still tired all the time, brain fog, dizzy (BPV for which I am treated with Epley manoeuvres), really dry skin, poor sleep, painful pelvis, fibromyalgia, dry eyes, dry everything!....... I told the doctor I don't feel any different and he said some people don't! I pushed the point. My partner has to take Thyroxine as he had a brain tumour. My original T4 was lower than his, and his endocrinologist prescribed double the amount than my doctor did, I asked for an explanation - he couldn't give me one and said I could try taking 50 if I wanted to. Did this, but lab only did TSH at last test - they won't do it unless they think it necessary. Have been back so many times about this for my partner as his TSH is not reliable because of surgery and radiotherapy. Can honestly say I feel no different now to nine months ago - except I've had panic attacks recently. Back to doctor on Tuesday.

  • I have been on levothyroxine for over 2 years now. i've worked out constantly and eating right but for some odd reason i see no improvement. im tired all the time and the weight i gained (60 lbs) seems to never shed. I am physically tired and weak. everyone sees it as me being "lazy" or "crazy". i cant complain about my symptoms to anyone bc no one wants to dwell on illness. most of my family say it's all in my head and I'm making it up. my doctors won't up my prescription dose bc they say I'm in a "normal" range. Doctors have hit me with responses such as your too young, you might be stressed, depressed, or even you're "thinking too deep into it". I'm sick of THOSE kinds of doctors. The moment I hear such things I leave and never go back, i look for a new dr that can actually help. until I hear a dr say to me, let me look into it or I know a way to help you, I will then have found the right dr. not just one who is there for a paycheck. I learn more off Google than those people. I'd rather pay Google to give me a diagnosis than waist my money on a dr that doesn't make the effort to help.

  • I have been on Levothoroxyn same as you and i also have tiredness, numbness in hands. Dry patches of skin, memory loss. I truly believe these Endocrine doctors are truly practicing medicine and dont really what they are doing. Try a second opinion and lookup the doctors ratings online. Im going to.

  • PinkPalmTree, not so relevant to you, but more for other sufferers who like you were, on the pill....oestrogen (or estrogen) reduces thyroxine efficacy by around half (What Your Doctor May Not Tell You About Hypothyroidism - Ken Blanchard) so part of the reason some of you may still have fatigue and other symptoms could be due to this? It took me over 6 months, a lots of doctors appointments and the support of several books before I found it to be partly to blame for my lack of improvement.

    Also, you should remember that this is a lifelong condition which will constantly change and alter (as we do) with age, life events and, annoyingly, the weather, so there is no '1 size fits all' remedy. If you are not happy with the care you are receiving from your doctor, or feel they aren't hearing you... request a second opinion, from another doctor or ask for an endocrinologist referral.

    I came to an agreement with my doctor, whereby (as she felt we hadn't ruled out depression) if I agreed to go on antidepressants for 2 months she would then refer me to an endo. I took them and noticed a huge improvement to my mood (after some minor initial side effects). For the first time in over a year (and I'm definitely an optimist) I felt there may be a positive outcome to my illness. I'm so glad I didn't dig my heels in and refuse them, as they definitely helped get me back on my journey to stabilisation!

    So to recap, read up on symptoms and treatments (to make informed choices/requests to your doctor), avoid oestrogen and goitrogens and any foods/drinks that make you feel poorly in the days after consuming them (alcohol for me 😕), but don't avoid antidepressants/counselling if they may help you FEEL better whilst you try to get better! Oh, and keep trying to be heard if you still don't feel well! X x x

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