What to do next?

Hi I'm new here and I realise this has probably been answered a hundred times before but hoping for some advice!

I was diagnosed with underactive thyroid in 2009 (although have suffered from symptoms since late teens) and put on 50 levothyroxine. Initially it helped but after a few months I was back to feeling tired, depressed, achy etc so prescription was increased to 75 which it's been ever since. Again I felt better for a short while then back to the norm!

Throughout this I have had bouts of anaemia once every year or two. The first was 4 moths before I was diagnosed underactive. The most recent was last Sept when my ferritin levels were 6!! I'm still on iron tablets trying to get my levels back to normal. Every doc I have seen have automatically assumed it's due to heavy periods, even though I have told them I don't, put me back on the pill and suggested the coil. I'm not veggie but have also been told to eat more meat.

Currently I feel that everything so far has just been a band aid and no questions asked as to why my thyroid isn't functioning properly or why I'm anaemic.

I've generally always excepted what the doctor has told me and never questioned anything until this latest bout of anemia, as I'm just sick and tired of being sick and tired, living like half a person and being called lazy! It also hasn't helped that I've moved about a lot and have rarely seen the same doc twice! I've never asked for test results (I usually just get 'they're all fine') or understood their meaning. I'm now doing my research but would really love to know what specific tests I should be getting? Should I ask to be referred to an endocrinologist/haematologist/nutritionist? What should I be asking the doc to look for?

Going by some of the posts I've read so far, it looks like I'm not the only one frustrated by the seeming lack of understanding in the general medical field! It's nice not to be on my own :)

Any help or advice on what I should do next would be much appreciated.

fi x

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7 Replies

  • Low ferritin and folate certainly are one of the precursors of hypothyroid

    technically once the levels are back above halfway in their ranges and you are on adequate thyroid meds they should stay there

    its best if you get hold of as many blood test results you have had during recent years and post them on here as few doctors have any real understanding of thyroid


    free t4

    free t3

    thyroid antibodies





    vit d3


    are the vital ones

    cholesterol is also useful

    50mcg of thyroxine is a very low typical starting dose but most women end up on 150mcg to 200mcg

    for men its more like 250 to 350mcg

  • Not much I can add until you post your thyroid blood tests, except that your dose of 75 sounds low. By the way, you are entitled to have copies of the tests but ask for reference ranges for each one, otherwise they will be meaningless to us.

    I also struggle with anaemia but because I rarely eat red meat, my doc assumes it is my diet, which may be true. I take liquid Spatone, which is absorbed better than tablets. You must keep iron supplements well away from Thyroxine - about four hours I think is what is said on this site. You should also take it with Vit C to help absorbtion.

  • Welcome to the site. Yes this question has probably been asked many times before but like you being new to the forum there are probably new people reading

    this today for the first time so that's a blessing not a problem. Just to expand a little bit, the ranges are important as different labs have different ranges so that could make more of a difference. Make sure you take your thyroid meds with a glass of water well away from other things on an empty stomach. Some take them first thing in the morning but remember well away from calcium so milk and cereal need to be 30 mins to an hour later. I take mine last thing at night-I seem to sleep better and may be they even absorb better whilst I am sleeping but we are all different so what helps one may not be the same for us all.

    Keep reading the forum, it may well mention things that you haven't attributed to your thyroid. I have leant a lot. Hope you soon make progress in reaching optimum health

  • Hi there fioweo.....yes you are certainly treading the same path as countless members of this forum and have come to the right place for help.

    Blood tests complete with ranges are the first step needed as suggested in order to see what is happening and to help you get improved treatment.Don't be surprised if Cholesterol is raised as I was told by my Endo that's common in thyroid patients.

    If you need to see an Endocrinologist you can contact Louise Warvill at Thyroid UK to see if there is a recommended one in your area.

    Hopefully you will soon be on the path to feeling well again .

  • Have you tried a gluten free diet. Often being intolerant to gluten or wheat can affect the body's absorption of iron.

    You definitely need to get your test results and try asking for an antibody test.

    Most medics just say keep taking the tablets. There is no interest on their part in finding out why you are hypo. I have a strong family history of hypo, also auto immune conditions such as Crohn's disease, food intolerances etc. I recently paid for a private ultra sound scan which showed my thyroid is severely atrophied. I also recently was diagnosed with high TPO antibodies but the medics just say keep taking the tablets!! So now I have a small library of books and have found this site so very, very helpful in me having a better understanding, not all the answers, about my disease. It is quite a steep learning curve but you cannot leave your health in the hands of conventional medicine!

  • Thanks all so much for your help so far, it's very much appreciated. I want to go back to the docs as armed with info as I can, but catch 22, my silly foggy brain wont retain any of it, so it's good to find out specifics I can write down!

    Crimple, I was gluten free (although not strictly!) for about a year before I went travelling and did feel better, but travelling and living on a budget proved too difficult to keep it up so it all slipped to the wayside. I'm slowly weaning myself off gluten again so hoping that makes a difference. I'm hoping diet is the answer and can stop taken my pharmacy of pills at some point!

    Thanks again and I'll let you know how I get on :)

  • Well here I am again and reporting my experience at my GP tonight which is think is a similar experience to most people on here!

    My appointment was to review the blood profile I had asked for. He didn't put up any resistance when I asked for it, and ordered the full profile, apart from Ferritin!! Anyway the results came back and my Vit D3 was slightly out of range so the instruction to me was to buy OTC Vit D3 which I have and started to take it. My B12 results were 286 (range 200-700) now according to what I have read on here and my own symptoms, I felt that some treatment would be beneficial. Not a chance. I was told in no uncertain terms that if results are within range it would be unethical to treat me and therefore he would not prescribe. I had previously mentioned Thyroid Uk and the recommendation that keeping results in the higher part of the ranges in the 5 magic areas was beneficial, tonight he told me that he had taken a look at the site and thought is was 'quack garb

    age' I felt so humiliated for suggesting that I should even consider anything the site said, and made to feel like the symptoms I had I didn't really have and he had no solution as to why, but just that at 58 I was getting older like everyone else my age and I just needed to get on with it! I nearly cried, I wanted to cry,still do, but everything you have all told me on here makes such perfect sense when you are a sufferer I know now that a) I will not be seeing this particular GP again - too much history and b) can I buy B12 and is it safe to take it's myself for a period of time to see if my symptoms change and before I go back to see another GP to prove my theory? I really would appreciate anything anyone had to offer. You certainly do feel like you are going crazy I never thought it could be like this.

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