Advice on self-medication

Hello all,

I'm new here and seeking some help/advice on self-treatment.

I have been suffering with 'subclinical hypothyroidism' for almost 5 years now, with TSH levels in the range of 4 - 9, yet no help at all from my GP. I am completely and utterly exhausted, can't work or think, with headaches, weak muscles and aching joints - just completely lifeless, and getting very low moods as a result.

I've told the GP this but I get the same response every time - these thyroid levels cannot be causing your symptoms! I have even seen an endocrinologist privately who gave me the same answer, and have been fobbed off with 'chronic fatigue syndrome'. However, I strongly believe that my thyroid levels could be to blame, and there is plenty of evidence out there in support of that.

I am now desperate, have given up hope of ever getting help from the doctors, and am seeking help as to how to start treating myself. I would like to trial myself on thyroxine for 3 months to see if I feel any better but have no idea how to go about this, or if it is even possible.

Thank you in advance for any help you can offer!!

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7 Replies

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  • nums91 Have you got full thyroid test results and not just TSH to share? If you can ask for a print out of your latest results then members can offer suggestions. Ideally the results needed are

    TSH

    FT4

    FT3

    Plus thyroid antibodies TPO and TG.

    Also very useful, because a lot of us are deficient, vitamin and mineral test results

    Vit D

    B12

    Folate

    Ferritin

    Seeing results from all these tests give a good basis for advice.

    If you haven't had them all done you could ask your GP but you're unlikely to get FT3 nor TG antibodies done on the NHS. We can tell you where to get them done privately with a home fingerprick blood test if you need to go down that route.

  • Ask GP for urgent blood tests for

    Vitamin D, B12, Ferritin and Folate.

    Muscle weakness and bone pain are symptoms of Vitamin D deficiency.

    I only got these tests by asking and 3 are low - one below range. My B12 is OK middle range.

    Have you any throat or neck problems? Lumpiness, pain, tenderness, swallowing problems, soreness?

    Ask your GP for an Ultrasound scan of your Thyroid.

    Did you ask GP or private Endocrinologist to test for Thyroid Antibodies blood tests?

    Can you get ALL your blood tests results - all numbers and 'normal' ranges in brackets and post here.

    Keep pestering GP. Keep going back.

    🐥

  • Your doctors are talking rubbish. I'd like to see them with a TSH of 2! They'd soon change their minds!

  • I can feel your pain. Im in the same boat as urself. I have been ill for years and the last 4 years especially have been hell. I too have been fobbed off by gp's, endo's and private docs and have got no help despite my tsh being on the high side and t4 and t3 being low. I am so fed up of being ill, in pain, fat and tired! I too have decided to go it alone but not a decission to be taken lightly. You must make sure you know what you are doing and take no risks with your health. Firstly you need a private blood test. I use blue horizon thyroid 11. Order one of these tests and when you get results put them on a post here and you will get plenty help with them. Once u can look at results and results of ferritin, b12, vit d, folate and antibodies you can then think about 1st what is causing your thyroid problem? Is it hashimotos? If so its more straight forward and u have to get the antibodies undercontrol by diet, selenium etc. If like me u have no antibodies is it genetic? Lots of hypo in my family and PA. Then what about your vitamin and minerals they have to be in order. That can take some time before that happens and a few blood tests for retesting. Are you menopausal? Lack of progesterone and high estrogen can mess with your thyroid levels big time. Another consideration is your diet, are you eating enough protein? Are you iodine defficient? I was because I dont eat seafood. Your thyroid needs amino acid tyrosine and iodine to make t4 and selenium to convert it to ft3 which is the most important level to look at and your doc wont even test for it. There are so many things that cause thyroid problems, I could go on listing them and the awful thing is that when you go to the doc and tell him how bad you feel they wont discuss any of this stuff with you. They will either dissmiss you or throw you a packet of levo when your tsh finally hits the magic number 10 and you feel half dead. So what ever you do dont go buy yourself a packet of pills and hope for best its not that simple. Baby steps and research and the help of the lovely people on here that know what they are talking about is what i advise. There is no quick fix and its best to ask why you have this problem and not just throw a packet of pills at it coz its for life. Its taken me 4 years to understand this much and i have been down all avenues. Ive finally gotmyself a good supply of levo but believe me the pills have been the very last resort. I now have to start a new learning curve finding whats right for me. So please start at the begining and get the blood test and take it from there xx

  • Thank you for all your help. It's good to know I'm not alone!! With regards to my blood test results, here's what I have from a recent test:

    TSH: 5.1 (0.27 - 4.2)

    Free T4: 15 (12 - 22)

    Negative for TPO antibodies.

    Vitamin D and folate normal.

    I also have a slightly low white blood cell count, not sure if that is related to the hypothyroidism - have been told it's normal for people of my age! (F, 26). I don't know my T3 levels, or B12.

    I guess I should get a private blood test done and then go from there. It's ridiculous that we have to do this ourselves!

  • nums91 What were the results for the so called normal VitD and Folate ? Your TSH is over range - indicating Hypothyroidism.

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

    Several companies to choose from :-)

  • Yep those of us that are being ignored need to self treat after studying all the options. See my profile as I was diagnosed CFS but was clearly subclinical hypo with hashis and they choose not to treat that resulted in 9 years of severe ill health and benefits hassle. I am only just coming out of the nightmare as I am self medicating. Forget all the trust you had in healthcare and read/ study until you feel confident to source your own drugs. I shouldn't have waited for so long but was very very ill and had no one to do the work for me- I had to get my brain working to do it myself. Sounds scary but years of ill health and not being able to work is far far worse.

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