.. New patient ill 16 years bloods normal but I'm not!! Consultant appointment help!

Hello I'm new to thyroid website but not new to being ill. I would greatly appreciate some advice. I've been ill 16 years. I was diagnosed first with m.e. then had graves disease in 2003 which was treated with block and replacement. after 4years of being house bound and not being aable to walk this gave me my life back and within a year was walking regularly and feeling more like myself. However its been a graual slide ever since coming off thyroxine over the past ten years. I was ok enough but not as well and even though I saw and endocrinologist and explained i didn't feel fully well, because my bloods were "normal" he claimed me cured. To be fair I wasn't too bad but was aiming to be wel.like many I've been up and down but completely crashed in 2013 and since I've basically felt like I was going back to square one. This is as you can imagine a v scary prospect after so many years. I believe my cfs m.e diagnosis is undiagnosed thyroid disease especially as thyroid runs in the family and I had graves disease. I have all the symptoms cold tired etc... I have a new consultant I met him in Dec 2014 when I was getting worse again and he put me on fludrocortisone for my adrenals and the contraception pill as he felt my hormones were all up the low..I did well on this for approx 8 months but in last 6 months getting v v v tired and cold and symptoms getting worse. I've finally got another appointment and want to persuade him that I need thyroxin or similar.

There is so much info now around some conflicting and I'm confused as to where yo really go from here. What should I be doing to try and assess what's happening as I can't rely on my bloods. My basal temp is low iron has been checked its low but supplemental iron hasn't raised it over the years. any advice would really be so appreciated I feel I have to somehow get my health back but feel I'm on a merry go round which I want to get off by getting better. Help! Thanks Katherine

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  • I am puzzled as to why your doctor took you off thyroxine. Do you have some recent blood tests you can post here with the reference ranges? Seems to me you need to be back on it, unless your thyroid is now functioning well, which sounds unlikely. It will be hard to raise iron, if your body is already struggling to survive. Members can comment when you post more info.

  • Ho thanks for your reply. My gp /consultant took me mmff thyroxine as I had graves disease so was overactive thyroid. The treatment is short term to try and adjust thyroid so that's why I was taken off. I will post my new bloods when they come back I'm sure they will be normal as this has been the pattern. Only thing is my tsh is usually very low in the reference range but not low enough for them to treat. Until now I have a new endocrinologist but I seem to be trying to teach him. Next appointment Saturday trying ttoxins out what other tests I can have done. He is treating adremals already. Many thanks

  • Thanks for your reply I have replied before not sure if u got it but have just posted my latest bloods. I was taken off thyroxine as that was the method of treatment short term block and replacement, since then ccouldn't get anyone to listen got alternating periods of sick and ok when I would try and seek testing and treatment with no results. Got this new endocrinologist since 18months ago finally taking me seriously and is treating adrenals. However got many symptoms still..

    Would u check out my latest post... Many thanks

  • Yours is another sorry story Kafe1. Off the top of my head I will say you are now hypothyroid, but to prove that you should get a copy of your latest blood test results for your thyroid hormones, with the ranges and post them.

    How many times people are dismissed, symptoms ignored (they don't know them in the first place) get medicationfor the symptoms which aren't relieved etc etc. etc.

    If you've not had a blood test recently. Make appointment with GP and ask for a full Thyroid Blood Test which is: TSH, T4, T3, Free T4 and Free T3 (most important this one as T3 is the active hormone which enables us to function normally). Also ask for Vitamin B12, Vit D, iron, ferritin and folate as we are usually deficient. Tell him you are fed up being ill with umpteen symptoms and no-one appears to know what your diagnosis is.

    Make the appointment as early as possible as TSH is highest then and they take more notice of the TSH than symptoms. Get a print-out with the ranges a few days after your test and post them on a new question for comments.

  • Hi thanks for your reply. I've had tsh t4 and t3 and thyroid antibodies done so will see what comes back. My tsh was normal so I didn't get t4 etc so I went back and requested them. I haven't ever had free t4 or free t3 I'm sure I've asked before but I do have a new consultant though I seem to be walking him throuh the bits of information I've got, he was prepared to give me a low dose of thyroine as a trial but I felt it wasn't a case that he knew what he was doing. I would like some way of monitor ing myself so if I do get treatment I know what is working or not. My bloods historicaly are normal though tsh is usually low in the reference range last time there was no score given. I will ask for free t4 and t3 I have heard of rt3 also is this something I can get tested and should I?. I really thank you for your time. Katherine

  • But what do you mean by 'normal'? 'Normal' is a programme on a washing machine and has nothing to do with thyroid.

    When a doctor say your labs are 'normal', what he means is that they're in the reference range. But that is just what it says - a reference (they seem to have forgotten that and confuse it with the Bible). It's where in the range the result falls that is important.

    If the TSH range is 0.45 to 5.25 (for example) and your result is 5.0, they will say that is 'normal', (but actually, I Don't know anybody for whom that would be normal, because the ranges are seriously skewed!) But most people need their TSH to be around one to feel well.

    So Don't ever accept 'normal' as a diagnosis. It's an opinion - and an ignorant one at that. Always get the figures - a print-out - so you know exactly where you are and Don't get fobbed off with the meaningless 'normal'. If you feel ill, it's not 'normal' for you! :)

  • Many thanks for your reply I have just posted my bloods if you would take a look many thanks again x

  • Many many thanks for your reply I have just posted my bloods, if u would take a look I would be so grateful thanks x

  • I have looked but cant find your blood results anywhere

  • Hi there really fed up and thanks for your reply. I am new to site but ive just looked and by clicking on Kafe 1 you get all my posts its the one next to the latest saying bloods normal endo appointment, help! Many thanks for looking at me x

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