Advice please: Hello, I have M.E., but about 1... - Thyroid UK

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Advice please



I have M.E., but about 18 months ago developed symptoms which my doctor was immediately convinced was a thyroid problem (hypothyroid, I think). My tests came back normal and I think he had done a thorough test as he showed me two numbers. He was so convinced it was thyroid that he said even if my results were just within range, he would have treated me, but they were good in fact.

My problem is, these symptoms have not let up: I physically shiver and shake and my teeth chatter at the slightest bit of cold. In fact it doesn't even have to be cold, I was like this even in the Summer months when my boyfriend was pointing out it was 23 degrees! Last night I had heated the bedroom well, but my feet were cold, I put some bed socks on and an extra blanket, but my body still kept shivering. I felt so utterly exhausted, but palpitations and aching stopped me from getting comfortable. My jaw then started to tremble with the cold and my shoulders shivered so badly, it was like they'd gone into spasm. Yet it really wasn't cold temperature wise, it just seems to be me.

I had gained a stone and a half in weight when I saw the doctor last year and that has stayed about the same. My feet still get very painful and swell up and I have plantar fasciitis, another reason he thought I had hypothyroidism. I also have weak wrists and he thought the onset of Carpel Tunnel Syndrome. My periods have long spaces between them and are very light, this is worrying me. My cognitive functioning is shocking and I am constantly forgetting things, dropping things and not even realising. At it's worst, my family have found my possessions down the street and I didn't even realise they were missing! Sometimes I feel like I am falling apart and break down and cry. I am just so exhausted.

I know I had vitamin D deficiency last year, but have been taking supplements for a long time now. I know my bad cholesterol is higher than it should be too, but my Dr. thinks this is genetic rather than dietary.

What I would like advise on really is does anyone know if this could still be thyroid? I am willing to get tests done privately if necessary. I am desperate. Or is it all related to M.E.?

Thank you for your time in reading my post, advice greatfully appreciated,


12 Replies

Hi May_ L,

I'm sorry to read that you are unwell. Did you get your B12 checked when you got your Vit D tested?

Hi May_L

There will be other folks along shortly more knowledgeable than myself but if you could get a printout from your doctor of the results of your thyroid and any other tests your doctor did (together with the ranges) that would be helpful.

Certainly you have a lot of the symptoms I had earlier in the year and I had lowish thyroid function, B12 and Vitamin D. Thanks to the help of the knowledgeable community here I started self medicating and taking B12 supplements and am now on the road to recovery.

You have come to the right place :)


Welcome to our forum May_L

Many stories are quite similar to your. Did you have the blood test as early as possible and fast (you can drink water). This can sometimes allow us to be diagnosed. If later in the day the TSH reduces and maybe miss a diagnosis. If you were on thyroid hormones you leave about 24 hours between the last dose and the test and take it afterwards.

Always get a print-out from the surgery with the ranges of your blood tests for thyroid hormones.

Ask the surgery for a copy of your results (some charge a nominal sum) and post on a new question for comments.

May_L in reply to shaws

Thanks Jose, Hunny and Shaws for your replies. I think I had a B12 test.

I will try and get a copy of the results, but it was about a year ago. I saw my GP a few weeks ago and told him how I had been over the last year and the chills I was still experiencing in the Summer, he's putting it down to M.E., but I feel it is just so extreme and wonder, especially when he was originally so convinced it was hypothyroidism.

Shaws, I definitely didn't fast, I was told I didn't need to, I can't remember what time of day it was.

Many thanks for your time and input,


shawsAdministrator in reply to May_L

They don't know clinical symptoms at all, so its useless telling them I think.

Ask if he will allow you to have a new blood test for your Thyroid Hormones as it's a year since you last had one. Ask to include the Free T3 as you want to know if you able to convert to the Active thyroid hormone (T3) (maybe lab wont if TSH is in range) so you can get one of your own if you can afford it from one of our recommended labs). He probably doesn't know anything about T3 or its action in our receptor cells. Include too Vitamin B12, Vit D, iron, ferritin and folate and say you want to get to the root cause of your illhealth.

Follow the procedures above for your blood test - post the results (with the ranges) on a new question.

May_L in reply to shaws

Thanks Shaws, I have just posted my results as have gone to pick up the print-out. I am surprised to see only a T4 and TSH result. No T3 done. Are the other antibody ones worth having done too if I go privately?

I wish he'd told me too that my ferritin and folate are low, I could have been doing something about that.

shawsAdministrator in reply to May_L

It's not unusual for labs not to do a T3 even if GP requests if our TSH and T4 are in the normal range. Doesn't help us as we've no idea if we convert T4 to sufficient T3.

You may have to get a Free T3 test done privately from one of our recommended labs.

Sorry to read you are struggling to find a reason for your symptoms. As others have said it would be good to see your results with the ranges - then people can comment. What looks normal to the GP - may not be. You may be in range - but where you are in the range is important. B12 needs to be around a 1000 to prevent cognitive decline and less than 500 can produce neurological symptoms.

These are the tests that I would suggest you need - TSH - FT4 - FT3 and the anti-bodies Anti-TPO - Anti-Tg. ALSO Ferritin - Folate - B12 - VitD. How much D3 are you taking ? Are you taking it with a good fat as it is fat soluble. If your GP is not able to ensure you have them ALL done you can have them done privately through Thyroid UK.

Raised cholesterol can be another symptom of low thyroid. Thyroid testing only came into being in the early 70's and before that time if the cholesterol was raised - they treated the thyroid. There is no such thing as good or bad cholesterol - it is a chemical so cannot be both good and bad. HDL and LDL are proteins that transport the cholesterol to and fro the liver. It was put out by the Media in the early days and has somehow become the norm and crept into everyones thinking.

Check out Dr Malcolm Kendrick - he wrote - The Cholesterol Con and has an excellent website in his name where he writes enlightening articles about the complexities and unreliability of research. Way over 80% of cholesterol is made in the body - and for good reason. We need it for the processing of VitD and for all hormones. Also the brain is around 25% cholesterol. So with 12 million in the UK on Statins is it any wonder brain illnesses are on the increase.

I am not a medical person - just a Hashimotos sufferer - who has travelled the bumpy road to wellness. Hopefully you can too..... :-)

Will look out for your results - in a new post.

May_L in reply to Marz


Thank you so much for your detailed response and advice to me - I am very grateful of it.

I wish you all the best with your own health and am just have just got my results to post - very interesting given what you've told me!

Many thanks again,


Thank you for your response, I really appreciate it. It really seems like there's a lot I haven't had done!

Hi May-L,

As someone else who has ME the advice I can give is that, in my experience, ME can (and often does) include thyroid, adrenal, digestive, toxicity and immune system issues with the attendant vitamin and mineral deficiencies. In fact I'm sure that a lot of people diagnosed with "ME" are in fact hypothyroid or with fatigued adrenals or both. Following up on your thyroid test and posting the results as others have suggested would be a good first step, especially as the results that the NHS considers "normal" may be just the opposite for the patient concerned.

By the way, some doctors use a diagnosis of "ME" as an excuse for being unable to help further - resist this as far as you can.

Good luck!


May_L in reply to Xanthe

Thank you Xanthe, sorry to hear you have M.E. too. I've had it since I was 10 years old, (long time ago!). I've posted my results, I was surprised how low some of the nutrients are, thought I had a good diet.

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