Advice and help please

Apologies for the long post, was wondering if anyone can help me........I am in such a debilitating state at the moment, cant walk, absolute zero brain function and fatigued beyond belief. I've lost my business, partner, nearly my house because of this flipping disease.

I have normal thyroid results (according to the NHS) have been sent around the all the departments ie Nuerology, Heamatology, Endo and now Rheumatology just so I can claim my benefits whilst they search for my problems! The Rheumatologist told me after a 20 minute appointment that he thinks I have Lupus.I broke down and begged for hm to listen as when at the beginning of my thyroid issue journey several years ago explained that I had to seek private help after struggling with ill health for years, being turned away by doctors and within 6 weeks of being given Levo was jumping around like a kangaroo, I got my life back. The poor man died of a stroke and I was unable to carry my treatment with him.

The Reumatologist gave me a steroid injection which I wasn't happy about but felt so ill, cannot work, have 3 children (lone parent) fighting to keep my roof over my head, so gave in. Within a couple of hours I was floored, had to go to A&E with serious side effects! I went back to see him, said to him 'as you've nearly killed me, can you please listen and take me seriously about mine and my families history about thyroid issues. I asked him to submit the full thyroid testing, collected the results and the lab where I live have ignored his instructions as my TSH is normal. When I could afford to see another private Endo, she noticed my TSH level never changed no matter what level of Levo I was taking back then and Ive noted that although I havnt taken any now for over 4 months its still the same.

My question is, if my doctor, local endo or anyone else in the NHS for that matter doesnt recognise my health issues as thyroid related problems, what can I do?

The other problem I have is, as I feel so ill, I cant have a conversation with the doctors as my brain is not working at all!

My sister had the same issues with normal test results and was only diagnosed after thyroid eye disease kicked in.

Can someone please help, I am a single parent, completely house bound, is there anyone out there that can help me fight with the doctors to fight my case?



11 Replies

  • Claire, you are actually describing me. I was diagnosed at 18. I am now 57! I had Lymes disease iny 40's . Two years ago a MD put me in Levothyroxine... Not testing my TSH stating my symptoms tell her that after a month had blood work Never had TSH problem prior. Complained tired dragging loss of concentration. Put me on Wellbuten saying it will help the depression . Well after reading up on the Levo... It makes you tired it makes you gain weight it also causes concentration problems.

    Lupus has no cure you can control it by first getting off the thyroid med.Vitamin D 500 mg chewable tablets ... 500 Mg vitamin C 3 x daily. I seriously feel my Md is also specializing on a weight balance program... Wondering how many went to her got put on the Mes gained weight ...then used her weight program... Just saying a lot of medications have side effects. Lupus flare ups come and go. I found that taking the thyroxine brought it out more. Just saying😔

  • Hi Cathyanne58

    Thank you for your reply, I wasnt tested for Lupus, he literally said cant send you away as you've been everywhere else (the other departments). Gave me the injection to see if it helped but it completely floored me and I ended up in A&E. Can I ask you what kind of test you had please?

  • CSavery, Why was your thyroxine stopped? If you felt better for taking it it indicates you need replacement whatever your results say.

    As your TSH didn't respond to thyroxine replacement you may have secondary hyothyroidism which presents with low-normal TSH, low FT4 and low FT3. If you can't persuade your doctors to test FT4 in addition to TSH to rule out secondary hypothyroidism, I think it may be helpful to order private thyroid tests from Blue Horizon or Genova via

    Finally, if you felt better on thyroxine and NHS won't prescribe it, you should consider buying it on the internet and self medicating. PM me if you need sources.

    Claire, If you click on HU My Communities and +Browse Communities I think there may be Lupus communities.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi Clutter

    Thank you for your reply, in answer to your question about coming off Levo, my new doctor wont give it to me now as he said my TSH was supressed a few months ago. And because my local Endo in Chichester said I was okay back in 2011, the new doc wont refer me back. I have just checked my recent tests which the Reuhmatologist requested, they only did the following:

    TSH 1.1 (0.35 to 5)

    Free T4 14.1 (9 to 19)

    Free T3 3.9 (2.9 to 6.1)

    Vid D 85 (75 to 200)

    Ferritin 45 (6 to 204)

    TRansferrin 2.7 (1.76 to 3.64)

    Iron 18.4 (9 to 30.4)

    Unsaturated Iron Binding Capacity 49.37 (20 to 62)

    Total Binding 67.77 (45 to 70)

    % Transferrin Saturation 27 (16 to 45)

    I am soooooo bad Clutter, I cant manage anything! Took me an hour to write this :(

    I will need to see if my parents will give me some money to order tests from Blue Horizon

    Thanks again

  • Claire, TSH is low-normal, and FT4 and FT3 are low-ish in range but not so low as to suspect secondary hypthyroidism or cause such debilitation. Neverthless, if you felt better on Levothyroxine, why not buy some and self medicate? If those results are very recent there's no point in borrowing money to retest thyroid levels.

    VitD 85 is in the replete range 75-200 but you could supplement 2,500iu D3 daily to maintain levels until April.

    Ferritin is optimal half way through range so supplement Ferrous Fumarate and take each tablet with 500mg-1,000mg vitamin C to aid absorption and minimise constipation. Retest in 6 months


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.


  • Hi Clutter

    Thank you, I will be in touch soon. Thank you for all you help and advice

  • I agree with Clutter and this doctor who has since died was a one-man band trying to get Endocrinologists to recognise that the TSH wasn't the way to diagnose but to take patients clinical symptoms. He said many were put in parlous situations because of this 'evidence' based way of treating. You see, he was taught as a medical student the clinical symptoms of hypothyroidism and before the blood tests were introduced and people got a trial of Natural Dessicated Thyroid Hormones as levothyroxine was around then, neither were the blood tests.

    If you need help in sourcing. Put up a new post and ask for Private Message to be sent to you to source for yourself.

    Your life and business has been upside down for ages and you need to take your own health into your own hands and any questions/help will be forthcoming for you. Levothyroxine and/or Natural Dessicated Thyroid Hormones are helpful.

    Ask your GP to test Vitamin B12, Vit D, iron, ferritin and folate. Also ask for a new Thyroid Gland blood test and make the earliest appointment and fast (you can drink water).

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Csavery, have you had B12 tested? If not maybe your GP can do that at least for you. If it is low it can cause dreadful symptoms. Simple dropper bottle at Holland and Barrett is about £8.00. You can't overdose so you could start it without having a test first, but it might be good to know if that's the culprit. I'm certainly no expert but that ferritin level looks low, should be about 100, so you could supplement with ferrous sulphate to get it up. I'm not sure about the vitamin D being low or not, sorry. If Ferritin, Vit D, Folate and B12 aren't at good levels your thyroid won't work properly.

    Of course you just may need more thyroxine too and Clutter is right, you've got no choice other than to self medicate. Just do is too short to continue as you are x

  • Hi Jacquid

    Yes, I have had B12 tested, cant find the most recent print out but from memory it was just under 300. I also asked for the active test and that came back normal too. In 2011, I noticed my B12 level was just over 650, I have begged for a trial of injections to see if this helps based on other countries guidelines of anything under 550 and as I have every single symptom of B12 deficiency. Ive also had iron deficiency problems over the past couple of years, which would come back if I stopped taking iron supplements. Im going back to see Rheumy tomorrow, he was quite happy to give me Hydroxychloroqune without any tests for Lupus 'to see what happens' so will suggest again for the B12 injections. I did ask him but he had a chat with his colleague in front of me and advised not to.

  • B12 at 300 is considered normal in this country but in Japan you would be deficient if under 500. 650 sounds good but that's 4 years think it might be still that level? Might be worth getting it tested again. Tests for Pernicious Anemia don't measure the B12 but intrinsic factor so it might be worth asking for that :)

  • Hi,

    I've been there, done that, got the t-shirt!!!

    I know exactly how you feel. Knock back after knock back with every doctor or specialist i saw.

    Diagnosed with CFS from 20 minute appointment with Rheumatologist.

    By this point I'd been house/bedbound for 5 months and blood results were 'in range'.

    Fought tooth and nail till finally i was diagnosed with a TSH just slightly out of range.

    Thyroxine worked brilliantly for nearly a year( apart from tongue swelling we think due to fillers) then i became intolerant to it and was so ill. Stopped taking and felt brilliant for a couple of weeks then downhill once more. House/bedbound once more for 8 months.

    Then i started on T3 only and it has given me my life back.

    Now have backing from consultant and GP but have to buy myself.

    You now have to take your health into your own hands. Read, read and read some more. Learn everything you can from others on the forum like i did.

    It doesn't sound like you have time for your TSH goes over the magic figure.

    You've been on thyroxine and it worked. If you can't get it prescribed again ask on the forum and somebody will pm you were to buy.

    You've lost enough already, please don't allow yourself to lose anymore.

    Take charge!!!

    Good luck

    Sparkly x

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