Could I still be hypothyroid

Hi all,

I've posted before. I have severe ME/CFS which affects every system. 2 blood tests have shown clinical sub thyroid and my GP is going to re test TFT in September. What I need to ask is, has anyone else or anyone heard of hypothyroid with severe and frequent hot sweats, also waking in night with them accompanied by stabbing pin like pains on skin? I went through menopause at 42 (now 49) and these flushes/sweats are not abating. I know hypothyroid is slowing Of the metabolism and feeling cold which I also can feel to my core but I wrap up in my electric blanket then immediately overheated. It's like my body thermostat is not functioning. Any advice please ? Thank you😀

22 Replies

  • I mean sub clinical hypothyroid haha

  • You are merely describing my husband 25 years ago

    frosen like a block of ice to touch yet sweat dripping off hi forehead covered in blankets

    He has CENTRAL HYPOTHYROID following thyroidectomy for Graves

    Our daughter has Central hypo from Hashimotos

    4 granddaughters all have Hashimotos

    NOT ONE OF THEM can tolerate either levothyrocxine or T3

    they are only well on NDT

  • Thank you for your reply :). I'm sorry about your family's problems. Lots to think about from what you've told me

  • Maybe give your doctor this link to read particularly this excerpt:

    Physicians have various view points as to whether sub-clinical hypothyroidism should be treated. There is no real right or wrong answer, and a lot depends on the patient's preference. One criterion that does help to make a decision as to whether treatment should be started is the cholesterol profile. Patients with a high cholesterol level (particularly LDL, or bad cholesterol) usually benefit from thyroid hormone replacement therapy, since their cholesterol profiles often improve with replacement.

    As a patient, if you are diagnosed with "sub-clinical hypothyroidism," you should discuss the pros and cons of starting thyroid replacement therapy with your doctor. Likewise, you should have a fasting cholesterol profile to allow you and your doctor to make an informed decision. Whatever you choose, it is important to remember that you need to have continued follow-ups with your doctor. If you have chosen to start replacement therapy, you will need to check your thyroid hormone levels while on replacement. If you have decided to wait, you will need to have blood tests to follow your thyroid function. Remember that your preference plays a large role in any therapy you choose, so don't be afraid to address your questions or concerns.

    This excellent doctor (a Virologist) was hounded by the GMC (not his patients who travelled throughout Britain to see him) because around ten years after the blood tests and levothyroxine was introduced he was being sent patients who had 'mysterious' symptoms and who were diagnosed with cfs/m.e. (new diseases) Because he had been trained as a medical student on all of the symptoms of hypothyroidism he (as all the other doctors around the same age) treated patients with a trial of thyroid hormones and they recovered. He tried to get every Endocrinologist to a meeting to discuss the 'parlous situation of patients' but not one accepted his invitation. They must have been 'frightened off'. On one occasion a patient was told by an Endocrinologist 'we've got him now' just before his next meeting with the GMC. Why, he diagnosed according to clinical symptoms and prescribed.

    Endocrinologists and doctors are told to only diagnose according to the TSH which leaves thousands suffering or diagnosed with another illness and prescribed when in reality it may be the lack of thyroid hormones which is causing the symptoms.

    If you've not had a recent blood test for your thyroid gland hormones, ask for T4, Free T4, Free T3,T3 and antibodies to be tested and also for Vitamin B12, Vit D, iron, ferritin and folate as we are usually deficient. Get the test as early as possible (TSH is highest then) and fast too. Get a print-out of the results with the ranges and post on a new question for comments. (some labs may not do all of them).

    I would say your symptoms are hypo and the fact that you have ME/CFS would be a step in the right direction.

  • Thank you for your help and all that amazing in depth info. I am seeing my GP next Wednesday.

  • be very very sure that your GO puts

    Free T3 ?????????????hypopituarity /central hypothyroid onn the form





    Vit d3

  • It might be worth finding a nutritionist who can check other vitamins and minerals for you as well as the ferritin etc which are particularly important for thyroid problems. For example many people are deficient in zinc. The nutritional doctor I went to when I was menopausal said that if you sort out the nutritional status, then any medical problems will present more clearly.

    Our medics have negligible training in nutrition unfortunately.

  • Thank you for taking the time to reply😀. I will consider all you've said

  • I'd look into bioidentical progesterone supplementation. You might also want to check out the Perrin Clinic.

  • Hi thank you and have been considering the Perrin clinic as I was exposed to DDT and lindane for many years as a child. The Perrin technique has been mentioned by a relative but I've tried everything recommended over the years and was dubious to try yet another technique but who knows? And with you mentioning it too when I'm considering it makes me wonder!

  • You'd be amazed how I came across the Perrin Technique, personally. It's quite a story, especially as I'm in the US. So I didn't go there to any of the Perrin Clinics, but I read the book. And it was exactly the information I needed for myself, to understand how my spinal issues were messing with my lymph system, hormones, and well, everything else. So spinal correction is something I'm incorporating into my regime - I think of it kind of like a car. If your frame is bent, do you keep trying out different sorts of tires and brakes and fluids? Or do you fix the frame so your tires and brakes and fluids will work normally? A car is a machine. A human body is another sort of machine. Both have frames. And if the frame is causing a lymphatic blockage, nothing can sufficiently or efficiently go where it needs to go. Dr. Perrin has tremendous success treating CFS/ME... I think it's worth checking out, getting the treatment, and then seeing how your thyroid symptoms are doing.

  • May just do that! Thank you! Only thing I'm concerned about is I read, on an ME/CFS forum that the technique included massage of the chest and and a lady felt very violated when this treatment was carried out on her. Put me off a little. You heard anything about that?

  • No but this is covered in his book, he states that with the chest massage, with women, there is always someone else there in the room, like a chaperon, to make sure that doesn't happen. A lot of lymph flow through the chest and breast, so it is a place where massage needs to happen. He does teach how to self-massage though.

  • I've looked at the book review on Amazon UK and the treatment is way too expensive for me but I am very tempted to buy the book. Good reviews and bad. Can't afford for something else not to work, especially at our age, with low income

  • The book does give a lot of helpful instruction on exercises and self-massage. I don't know what insurance is like over there - I'm assuming insurance won't cover visits to the clinic? Maybe there are some osteopaths who can help. Anyway, I hope you find the information helpful, and that you get all the help you need, and feel better. :-)

  • Thank you! And thanks for support and advice. All the best to you😀

  • Oh yes, I have the frozen to boiling in a nanosecond. I swear I can do it faster than Captain Kirk can go into hyperdrive. I get cold, cosy up to a hot water bottle, then I'm throwing it away and putting my arms out the bed, then my legs, then all of me, and fanning the blankets, sweat beading all over my skin. It's hellish and I hate it. Sometimes, even as I'm doing this, I can still have frozen feet! Go figure....

  • Yep that's it! And pain with them through the night like loads of pins/electric shocks through my body. Your diet story mirrors mine and wow was in in pain on carbs, in bed most of time, unable to function at all. I'm under a private doc and she told me how bad the diet was for me and put me on the caveman diet which eased the pain and hopefully in time will help me improve - am severely debilitated. Diet is a huge factor. Take care

  • Well I got the electric shocks all right, but not in my feet! I ended up with trigeminal neuralgia, a degenerative neurological condition where you get severe electric shocks in your face (mouth, in my case). Makes you wonder, doesn't it, if our conditions are not related somehow?

    And strange you should say that about your diet. I've long suspected carbs are my big problem too. I've recently started removing all dried fruit, and curtailing fresh fruit between meals. I'd already removed added sugars quite a while ago, but weight gain is STILL an issue for me, plus the ill-health, of course. There's nothing else left for me to try, other than gluten-free, which I plan to do shortly, once I get through the last of the sugar withdrawal!

  • Hi, my diet, if this helps. Obviously it's through years of trial and error for me personally with allergy/intolerance i have to many things so may not suit you... Breakfast eaten in stages so doesn't knock me out as much: 3 eggs, 2 Turkey bacon slices or occasional pork bacon, tomatoes - all cooked by my lovely family in a little beef lard. Lunch: salad stuff I can tolerate, grated carrot, meat. Dinner: veg I can tolerate and meat or salmon. Can't tolerate: coffee, tea (or fruit/herbal), no fruit, some veg, alcohol, peas (have once a week only), beans, nuts, seeds, any oils (except a little organic hemp which I also use on my face. This not a suitable oil 4 cooking though), processed foods, any grains -except a little white rice occasionally, potatoes -except a little new potato occasionally, sugar, nuts/seeds, dairy, mushrooms... I only tolerate the carbs evening time, and have occasional gluten free toast or wrap though these do give me diarrhoea. Need multivit/min, only one I can tolerate - and have tried them all, is wilkos for women plus other things recommended by Dr myhill n GP.

  • And I've lost almost 2 stone even though I am laid down most of the time as severely affected with ME. I was a qualified nurse and district nurse so do have nutritional/medical knowledge and know how to get the nutrients I need through supplements/foods I can tolerate etc so I do my best to keep my diet balanced. But I have found starchy carbs to be my number 1 enemy - esp gluten. Hope this all helps but again it is personal for me and you will be different. Take care

  • That's interesting, Glass, thanks. I see you are pretty much following a low-carb diet; I think I will have to follow suit.

    I don't know if you know Peter Attia, but he was a surgeon (at the time; he does something different now) who was into extreme sports and he just couldn't lost the last stone of weight he was carrying, no matter how healthy his diet or how much he worked out (and he did work out, doing 3 - 4 hour stints). He went completely carb free and finally lost the weight. He made the point in a TED talk I saw that he thinks he has a particular genetic make-up that really can't handle carbohydrate. I think people are like that: some can, some can't, all in varying degrees. I suspect I may be one of the can'ts!

    Here's a link for his blog site, if you want to read more about him. His work is very good, but highly technical. He's very much a scientist, not a health guru!

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