Still undiagnosed and still feeling awful!!!!

Recent blood tests results TSH 1.20(0.35 - 4.5) and T4 13 (10-25) much the same as previously. I did start a trial on 25mg of levo a few months back but felt even worse and was unable to persevere. I have my endo appointment coming up after all this waiting and wanted some advice so I can use this time beneficially. I am currently taking vit B6 for energy, and calcium and magnesium as my calcium reading was low and the magnesium for sleep, it is helping slightly, otherwise all the same symptoms and few new ones, very itchy skin around face in particular chin area and very sore/stiff fingers between first and second fingers and a very small swollen pocket there too. I find the lack of sleep and energy the most debilitating and struggle with any kind of social life now, all advice and tips for endo questions most welcome.

12 Replies

  • This is where I was in 2010. I had a trial of levo at 25mcg and felt even worse (if that was possible). I was told later that the body recognises the T4 coming in and the residual thyroid function that is already there shuts down, which is why people's results are often worse if they're given a low dose and then re-tested.

    I have been very lucky in that even though I don't have any diagnosis other than CFS, I have been given a reasonable dose of levo by the NHS. I have to supplement this but I am now well.

    They should be looking at secondary hypothyroidism for you, and also testing your T3. If that is in the lower half of the range (as the FT4 is) you are going to feel pretty bad.

    I know I have been very lucky, but it has been a fight every step of the way and it's not over yet. If I had my time again, and I knew in 2009 what I know now, I would self treat with NDT. I can't advise you to do that, but unless you can find an endo, NHS or private, who recognises your particular situation, then the chances are you will get little or no help or support.

    Read, research and learn so you know more than they do. It's the only way.

  • Hi thanks for the reply I will look up secondary hypothyroidism and continue to read and research. At the moment I am too cautious to self treat with NDT but do feel this might be my only option moving forward I will give the endo appointment at the end of the month a go and mention the secondary hypothyroidism and more T3 tests and if no joy, i will be back on here asking for help self treating, thanks x

  • Sorry meant to ask how much levo are you on as I thought 25 was too low and had read too low a dose is as bad as not treating, thanks x

  • GP currently prescribes 100 mcg because I refuse to do as I am told and accept a reduction to 75mcg, but I actually take 125mcg and am considering trying a rise to 150 as my FT4 is now only just above mid-range.

  • Jane

    Has anyone suggested you might have hypoparathyroidism? The low calcium you mention is a clue to what might really be going on.



  • Hi Lilymay, thanks for the reply, no one has mentioned it. I am keeping an eye on my calcium levels myself and supplementing as the leaflet at the hospital following my left thyroid lobectomy mentioned it, I request a calcium blood test whenever I get bloods done it is still on the low side. I will mention hypopara to endo when I am there and ask for further advice.

    thanks x

  • has ferritin and folate been tested ????????????

    without ferritin being over 70 you cannot utilise thyroxine so that could be why you felt worse

    TSH that low could indicate 2ndary /central hypothyroid

  • Yes both tested a few months ago and ferritin was over 70, should i ask for these to be tested again at endo appointment, do they change much over weeks/months. I will mention the secondary hypothyroid to the endo, thank you for the reply x

  • In which case very much sounds like something else is going on

    could it be coeliac or are you using aluminium or non stick coated cookware or slow cookers etc or is your water supply treated with any form of aluminium or flouride

  • I have thought about coeliac as waiting for MRI on gall bladder appointment should be soon so did wonder if I had a gut problem of some sort. I do use a slow cooker what does that do to you? thanks for reply x

  • Slow cookers , electric coffee machines etc all have hidden Aluminium elements in them ....heat any form of aluminium and it produces a kind of radiation which affects the food and your whole digestive system and beyond

    many areas have water supplies that are treated with aluminium salts and or flouride and same result happens aluminium poisoning /aluminium allergy

  • I had no idea I will look this up thanks x

You may also like...