Pernicious Anaemia Society
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Mystery illness help thanks for reading

Hi new here and need some advice if possible I went through break up in 2007 by 2008 I had dropped from a size 16 to an 8 I was diagnosed then with irritable bowel depression/anxiety due to me feeling freezing all the time like I'm just about to go down with flu or something - I cannot gain weight I have just undergone total hysto including ovaries at 36 due to pcos (heavy irregular bleeding constant infections etc..) I am having night sweats also for the last nearly 8 years there has been no change to this after hysto and I'm on hrt 75mcg with no change at all I have spells of chest pain dizzy ness breathlessness and headaches more recently I have been having severe memory problems I'm a mum to 3 and it's causing problems - i had a stillbirth 29 weeks 3 yrs ago tsh was not quite right but in normal limits.

I've also got clumsy keep bumping into things losing my balance and have pins and needles in hands when waking and occasionally in feet

Keep getting swooshing sounds in my ear and dizziness nausea sickness

Every blood test I have had with thyroid function the last 18 months has been not quite right as the dr (different ones each time) has put it (in uk same surgery) I had a private thyroid function test done 6 months ago showing tsh at 0.17 will try to upload comments here.

This week my dr has called the latest round of blood tests has shown something not telling me what til I go with my thyroid.

The thing is I seem to get so close to them figuring this out then they send me home with the same generalised anxiety disorder they relabelled me with after my daughters still birth - yes I was anxious being pregnant again afterwards and yes I keep feeling panicky but I'm happily married not depressed and run a successful business whilst being mum - what do I do when I see the dr any advice

After my op my temp sat at 35 they couldn't raise it bought me blankets

My blood pressure has been low since all this started also

Thanks in advance for reading I may have missed some symptoms as my brain is slow these days :) thanks x

Image is of private test 6 months ago same week NHS dr test came back fine

UPDATE:DR called folate is low given 5mg folic acid level 4.5

Level serum b12 334

Someone in thyroid suggested I put all my symptoms here incase it's relevant if anyone can help thanks

10 Replies

Also have siatica and stiff neck with burning sensation in upper arm on left waiting for physio dr suspects trapped pinched nerve


Hi Niaandboo

Sorry to hear you are having such a bad time.

It may be useful to people here to mention that you have already posted here twice in the last day with B12 and folate results, and a number of people have already replied to those earlier posts.

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Thank you sorry new and not sure how to edit posts etc


No problem or need to say sorry. It just helps for people to know you have done earlier posts.

Re editing, I have been here for five months and only found out how to edit last week!

Down at the end of each post or reply, there is a green Reply box, a thumbs up Like box and another one with a tick.

Click on the tick and an Edit option comes up. Click and away you can go. You can only edit your own posts or replies.

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Hi I'm new to this site. Cannot believe you sound just like me. A year ago had severe diarrhoea, lost over a stone in weight, had severe anxiety. Dr said I was stressed. I had a lot of antibiotics the previous year. I was left shaking , severe headaches and couldn't get bowel back to normal. After lots of stomach bowel testing was told nothing wrong.

Took multivitamins for a few months before felt normal. Had another dose of antibiotics and stopped multivitamin as diagnosed with lots of food intolerances. The multivitamin had citrus and green tea in which couldn't tolerate. Within a month went downhill. Diarrhoea again, neck muscle spasms, anxiety etc etc

Returned to Gp for more blood tests but nothing showed. Since then things have got worse.

Now have stinging nerve pains in head and neck bringing on anxiety, palpitations, tired but can only sleep until 4 am, pins and needles in hands, feet, arms, ankles, shaking, pain in stomach, sometimes diarrhoea,burning tongue.

Returned to GP as I've suspected B12 deficiency through my own research. Waiting for blood results. In the meantime have started taking B12 under the tongue.

You have my sympathy as it's so debilitating. Let me know how you do and I will you.


Hi! Good to know we are not alone - I'm sure there's one root cause and or trigger to whatever it is, hopefully we get some answers and hope u are ok and not too fed up with it all xx


Hi yes I think you're right. I do have one person who does help and I pay privately for an ex GP/ nutritionist advice. He helped me years ago when I had irritable bowel. He has suggested the B12 drops to raise my levels. He did say the NHS levels of B12 are quite low and for my age 60 my levels should be higher. I'm quite scared as don't want to do neurological damage.

Some days it does get me down but must be worse for you having children to sort. Let's keep plodding on looking for answers. Take care xx

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Exactly! Yes... the neurological is the most worrying for me too...I have visions of me forgetting the school run and all sorts - writing everything down to cope at the minute at least if it's b12 it can be stopped in its tracks I think, as I understand it (tho I have only just found all of this in the last 24hrs) been banging my head against a brick wall for awhile before xx


For anyone suffering diarrhoea, upset stomach, I'd advise cutting out gluten.

I did this 4 months ago and feel a lot better. I also think my goitre has reduced slightly in size. When you're intolerant to a lot of foods ( mine include coffee, ginger, pineapple, chocolate) then you're more likely to be intolerant of gluten.

Hidden , I'm so sorry you've had so much sadness and stress in past years. It doesn't do our bodies or minds any good. I can trace my health problems back to my partner dying in a road accident 2007 and the awful stress and anxiety that followed.

Keep reading here. I'm sure with treatment you will get yourself well again. And that's a very empowering thing to do.

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Thank you - so sorry for all you have been going through, I know stress was a trigger ...I can't touch coffee never been able to other things I avoid naturally are raw/undercooked peppers and chocolate gives me headaches! lol xx bread I'm really not good with bread x thanks for your reply :)


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