Advice please

Hi. I have recently been tested for an underactive thyroid but the results have come back negative. Over the last year or so I have had various symptoms including tiredness, muscle aches and a general feeling of being unwell. About 8 months ago I started to lose a lot of hair and my scalp was itchy and had scabs all over (lovely!!). The hair loss has now slowed but my hair is still thin and scalp still itchy although not as bad since the doctor prescribed some Betnovate scalp treatment. I also have very dry, itchy skin all across my neck and chest which I scratch until it bleeds. This has now also spread to my forearms. I also have moments of confusion, where I can't remember what I was saying or doing and I am always cold. I was diagnosed with Coeliac disease 2 years ago and since then I have put on weight. I have tried to lose some but am having trouble. I am not overweight but, having been underweight for so long, I am heavier than I would like to be. I also have osteoarthritis and, for this, I take 25-50mg of Amitriptylene a day. I am also on HRT. I read a thread on here saying that this could have affected by blood test results. I wonder if anyone could advise me please? The blood test results don't make much sense to me, but I know people on here seem to understand them! My TSH level is 2.33, and my free T4 level is 12.8. My diagnosis for Coeliac Disease took 9 years and I don't want to spend another few years feeling rubbish again. Thank you for reading and I would appreciate your comments.

24 Replies

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  • Welcome to our forum

    Your story is familiar. Clinical symptoms but blood tests don't 'fit' with the symptoms.

    Get a print-out of your blood test results, with the ranges. The ranges are important as labs differ and make it easier to comment. If doctor hasn't done a Free T3 test ask for this. They probably wont but it may be worth getting a private one. The reason I am suggesting this is that T3 is the active hormone needed in all of our receptor cells and if low, we can have symptoms you describe.

    I am sorry you already have a autoimmune condition and we can develop others unfortunately.

    I see you have been given Amitriptylene yet it's prescribed due to clinical symptoms without any blood test to confirm, yet denied thyroid hormones because you are within 'normal range' with clinical symptoms. T3 could also be described for depression but they have some notion thyroid hormone are 'dangerous'. It's probably more dangerous for us to be too low.

    If your GP hasn't done Vitamin B12, Vit D, iron, ferritin and folate, ask for these too as we are usually deficient. I will give you a couple of links below for info. If you copy and paste the top part of your history and put into your Profile, it gives members an idea without having to ask you repeat questions.

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/diagno...

  • Thank you for your reply. I will go back to the doctor and ask for further tests. I wanted to ask for advice first as I don't want to waste their time. I have been taking amitriptyline for about 10 years for my arthritis and cervical spondylosis but, when looking for information online, I came across a link between the medication and a negative thyroid test. Maybe I am just clutching at straws......

  • Follow your instinct. Not one of the medical people I saw/consulted even thought of hypothyroidism. It was someone who did first aid that suggested it and I am eternally grateful to them.

  • Hi. You asked about ranges. My TSH level is 2.33 and the range is 0.2 - 4.5 and my T4 is 12.8 and the range is 9.0 - 24.0. As both of my levels are within range, I presume my doctor won't refer me for any further tests but I know something is not right. It might not be my thyroid. I hadn't a clue until the doctor referred me for tests and when I went home and Googled it it was as if I had read the list of symptoms!

  • Run off a copy of the link below and send a copy for your GP to consider. Along with your symptom list which is also below.

    thyroiduk.org.uk/tuk/testin...

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

    You can also tell her you now belong to a support group and can she reconsider according to the above links and give you a trial of levothyroxine for about 3 months.

  • I did show her a copy printed from the first link but she didn't seem very interested. She just showed me previous results and said that they were all much the same so it didn't look as if anything was developing. She said they would test again in a year. Maybe she is right. Perhaps I have just tried to convince myself that it is my thyroid because I would like to have a 'reason' for the symptoms. She is the doctor so I guess I will just have to accept what she says.

  • If you ask the surgery for a print-out of your blood test results with the ranges and post them on a new question and you will get comments from the members.

    Doctors don't show much interest if we take things in from the internet, but she might read what you gave her, hopefully. She is only doing what she was taught - the TSH is the diagnosis but they are wrong many times and some will give a trial.

  • Thank you. Silly question, but how do I post on a new question? I thought this was visible to all members - have I posted in the wrong place?? That'll be the brain fog!!!

  • You've done it properly. It's a Message which is private. This is the open forum.

    When I said a new 'question' I meant to start again they way you began above.

    If you do want to Message someone, you click on their name which takes you to a new page and on the right-hand side at the top you will see Message when you click on this you begin and it remains between you and the person(s).

  • Thank you

  • Hi chicken, any one of your symptoms could be attributed to low thyroid. Your TSH is too high and even without ranges your T4 looks low as well. Amitriptylene can interfere with thyroid function, too. Weak adrenal glands can raise TSH levels and this is why it is difficult to know exactly what is causing low thyroid. Lately I have been reading about LDN for any autoimmune disease but it may be difficult to find any doctor or pharmacy that knows how to use this very old drug.

    health.howstuffworks.com/hu...

    stopthethyroidmadness.com/ldn/

  • Hi Heloise. I really don't know what to think now. I daren't go back to the doctor again after yesterday as I felt as if I had totally wasted her time. I will wait until Friday when I am having more blood tests and will ask the nurse what I am being tested for. Thanks to everyone on here, I have a better idea now of what I should be looking out for

  • You must feel discouraged but it is not your fault. I've read posts here for two years and some of these GPs are inexcusable. I've noticed there is some intimidation from these doctors? leaving so many suffering people to come here in very sad situations. I hate to see anyone allowed to deteriorate for no good reason and there is no good reason.

    Yes, have the blood tests taken and see what is found. We know that your thyroid is not putting out enough Thyroid hormone. Finding out "why" is the important part. I'll guess you have antibodies which means autoimmune problems and they are attacking your gland. Here are some short videos about that.

  • Print the two links above one of which state exactly the what >2 could mean, for your GP. If you think he wont have time at the consultation, send them to him with a short note pointing out that if you have low T4 and request extra tests be done to eliminate hypothyroidism, which are quoted in the form. If he enquires say that this information site is NHS Choices.

    thyroiduk.org.uk/tuk/diagno...

    Tick off any symptoms in form below for him too:

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

    Your T4 is very low considering it could be at 24. The page above also suggests other tests which could be done to eliminate/diagnose hypothyroidism. If he agrees I think he may wean you off the anti-d as it may affect the uptake of levo.

    Also don't forget to ask for Vit B12 and the rest at the top of the page.

  • So, I have been back to the doctor but it wasn't a very successful visit. She looked up my previous results, which have all had a TSH level of between 2 and 3, and she is happy with that. I told her that my main concerns were my hair falling out, my dry and itchy skin, every part of my body aching and feeling tired all the time and she said, and I quote, "perhaps you're just not a winter person." She is satisfied my symptoms are not thyroid related and that is the end of that. She is doing further blood tests but I think they are just general to see if there is anything that stands out. Just have to get on with it I suppose. Thanks for all your advice.

  • Itchiness, something to do with the liver? patient.co.uk/health/primar... the condition at this link is caused by autoimmune issues. But also you should ask for an thyroid antibodies test.

  • OMG that has worried me now!! Apart from the aches and pains, the itching is what is driving me mad. I had a liver function test when I had the thyroid one done and all the results look ok.

  • I have just been reading some of the links that people have given (thanks everyone) and feel a bit more positive. I left the surgery this morning feeling that the doctor had dismissed me and my concerns but I am not so sure now. She asked me if my joints were ever swollen. I said no. I have osteoarthritis and I wondered if she was thinking about rheumatoid arthritis as I had said how much I ached and felt exhausted. She then said that she would order more blood tests to check for swelling and inflammation. I still thought she was talking joints but now, I am wondering if she has ordered tests to check for antibodies. I have just been reading about Hashimoto's Thyroiditis. Does anyone think this is a possibility?

  • Hi chickenmitch, glad to hear the liver tests were OK, don't know if you have previously posted up ALL your blood test results with ranges, but always worth doing as you get more attention and information from members here than you will at your GP's. A test for swelling and inflammation, probably are not antibodies tests.

    For antibodies test, specifically ask for a Thyroid antibodies test and perhaps thyroglobulin test (perhaps others can advice if this one would be helpful in this case).

  • Thanks CC120. I did post results before but will do so again, although there is not much to show. I only had THS which was 2.33 (range 0.2 - 4.5) and T4 which was 12.8 (range 9.0 - 24.0). The doc said my results were fine and she wouldn't check them again until next year. She said my aches and pains and general feeling of 'rubbishness' were probably due to the weather and I would be fine come spring!!

  • Thank you chickenmitch, my TSH was 7.5, then 8, T4 12, for several years. GP didn't say anything about these results, receptionist would always say 'normal' results. Only when I insisted on blood test results did I find out. From your results and symptoms, I certainly think you should ask for the antibodies tests. Also, someone recently discovered that they have hyperparathyroid (after years and numerous consultants misdiagnosing). A PTH test is needed to rule that out. Tests to try to get out of your GP:

    1.Thyroid Peroxidase Antibodies (TPOAb)

    2.Thyroglobulin Antibodies (TgAb)

    3.TSH

    4.FT4

    5.FT3

    6.B12

    7.Folate

    8.Iron

    9.Ferritin

    10.Vitamin D3

    11.Calcium

    12.Magnesium

    13.Zinc

  • I just felt yesterday that I was wasting my time (and the doctors) and that she had decided that no further investigation would be done. The only thing that keeps nagging at me is that I was diagnosed with Coeliac Disease 2 years ago, and it took 9 years to be diagnosed. I first went to the doctor just after my son was born 11 years ago and said my tummy was bloated, uncomfortable and didn't feel right. At that time the doctor said it was just extra fat because I'd just had a baby!. I went back several times over the years and was even told at one point it was ovarian cancer!!. I lived with symptoms for 9 years before I was finally tested for CD and the damage to my gut was literally 'off the scale' - the dietitian said she had never seen such high levels. I know that's all irrelevant but, my point is, that I know myself that something is not right, just like I did for 9 years before but it is just a case of getting a medic to listen. Unfortunately I don't have much faith in any at our practice.

  • Sorry to hear that you have already been let down by GP's. I read that Coeliac Disease is caused by an autoimmune problem, so perhaps you can point this out when you ask for thyroid antibodies test?

  • Yes, CD is an autoimmune disease so my doctor has said it's worth checking my thyroid every year just in case things change. That's what is so frustrating; she has said there is a good chance I may develop an underactive thyroid, yet despite me presenting with so many symptoms, she won't take it any further. Grrr

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