Thyroid UK

Advice please

I posted for the first time last week but cant find my post to reply to the kind people that replied (sorry, being a bit stupid) Hoping that they read this post to thank them, I havn't had any internet for the past few days. Maybe someone could let me know how I find my post so I can reply to them?

I wanted to write an update, I've been in A&E a couple of times as the tierdness and breathless became worse and my left leg, bottom of foot numb and hands feel swollen and weak. I have also gone a bit death and my tongue is really swollen together and taste and smell isn't too good. I've completely lost my appetite but have gained another 6lbs in a week.

I've come off the t3 for now and upped my Levo to 125mg and will increase to 150mg in a couple of days which was where I felt my best before my gp stopped my meds last year (but then agreed to give me Levo which was never increased over 100mg in past 10 months)

My blood results are normal in the NHS eyes, so according to them, I shouldn't be taking anything, how do I get any help with the increased symptoms when as far as they've advised, there's nothing wrong with me! I cant walk up the stairs without getting out of breath, I'm really worried!

Claire xx

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Thank you so much, my brain is like mush x


Hello Claire, Things sound really bad for you. I'm no expert, but have you tried looking up symptoms for B12 deficiency, as some of what you are listing seem to fit that category? If you have the money to spare, there's a really good paperback written by a husband/wife, doctor/nurse couple on B12 deficiency. You'd be surprised at just what it covers. I do hope that you'll soon feel better. I can give you the title and author if you're interested. I believe we're not allowed to advertise on the blog.


So long as you are not the author, and posting in order to increase your sales, then there is nothing in the posting regu;ations stating you cant recommend a good book which others may find helpful. I often see people posting recommendations for books, its not really considered advertising as its not for gain


Quite right - so long as it is a general recommendation not for gain!

Guidelines are viewable here:



Hi Claire,

Just because the doc says your results are normal, doesn't mean that they are normal for you!

Everyone is individual, and if I took what the doc says, then I am highly symptomatic. If your are still having symptoms, something needs changing. There are so many ways of treating thyroid conditions and with hypo - some are on T4, some are on T3/T4 combined and some are on T3 only. It just depends what works for you, and that takes time, trial and error and hopefully, as supportive doc, if you can find one. If you can find a doc to explore all options with you, then that would be a great start, if you can get referred to an Endo - look carefully for one - email Louise Warvill for a list of NHS ones.

Also, if you post your latest results, people will respond:-)


Hello Claire, Somehow or other I lost my next reply, before finishing it, so here's hoping that I won't lose this one. The book is called "Could it be B12?" by Pachalok and Stuart. I found it most informative, but you will find quite a few bits and pieces on this subject on line, if buying the book is too much just now.

I really hope that you will find a way through some of these problems before too long.

Best wishes,



Hello Claire. It's me again. The book I had in mind is called "Could it be B12?" by Pachalok and Stuart. I couldn't put it down after buying it. It was chock full of information, and hopefully it might help you. I'm waiting for results of a B12 test for myself as I seem to have some of the symptoms they and others, on line, mention. I understand that the present NHS test isn't reliable, according to Patrick Halford of Food for the Brain.


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