Does this happen to anyone else ?

I don't know if this is thyroid related or autoimmune so I don't know where to post.

I didn't have a good night last Friday.Fridays are busy for me child minding my grandchildren,so all I want to do is relax and sleep well afterwards.

On Saturday morning I still felt tired and had a bit of a headache but nothing much but I didn't see to recover and by evening I was starting to feel cold,my feet were like ice even though I had them under a travel rug.I went to bed at nine o'clock,I had to stop on the stairs because I didn't have the energy and my teeth were chattering. So into bed well wrapped up and starting to feel a little better.During the night off came the bed socks and dressing gown,so hot. I expected to wake with a cold or something but no although I felt tired and achy all day nothing developed and today I'm fine again.

This has happened before so I'm wondering if it's immune related,whether it's good or bad.

So has anyone else had similar experiences ?

16 Replies

  • Hi Beat, I think you are going to have many who relate to this episode. I do feel it has to do with thyroid/adrenal due to the added exertion that day. It used to take me three days to get back to normal after traveling to visit my children. I felt depleted and was sleepy, cold, nauseous, etc. My take on it is that you are running on adrenaline when your energy store is gone and it does take time to recover. Are your thyroid levels good?

  • Hi Heloise, Thanks for your reply. I did wonder if the cold side of this was thyroid related,this is really extreme. I did have a blood test about a month ago and I'm due one again in Jan.

    Prior to that, I did have issues,my endo wanted to reduce my meds. GP said we had to go with it,so from TSH below 1 to plus 24 in six weeks. GP not only agreed to returning my usual dose but upping it. (one in the eye for endo.) So perhaps you are right I'm running on adrenaline.xx

  • I also have the extreme coldness episodes, it is a thyroid symptom - as of course is fatigue

  • Hi,

    I'm diagnosed with CFS/ME/FM, atrophy thyroid, some deficiency showed in bloods, nothing much & no hormone meds.

    This would be typical if I had overdone things & can take anything from a few days to much more to feel any better but only if I rest... a lot. Be no choice but to tbh.

    From my prospective it could relate to autoimmune or hormonal/thyroid. Confused....... me too. Very difficult to pin point .

    I hope your feeling better.


  • Thanks jelly.all views are helpful.xx

  • Once upon a time you would most probably have been given thyroid medication for your symptoms. Nowadays it all depends where the TSH result falls. A link for information. Unfortunately Dr Skinner and doctors trained at the same time as him have either retired or died.

    Dr Skinner died two years ago but his World Thyroid Register is still running and you can sign it if you wish.

  • Hi Shaws,thanks for the link to Dr.Skinner's world thyroid register,I wasn't aware it was still open. I've been on thyroid meds. for the last four years. I've seen two endos,the first with his registrars for three years. After complaints I was moved to another. I saw him once,(he didn't want to see me again.:/ ) Originally starting on T4 then T4+T3. I started on T3 only in Jan.13 and was beginning to feel much better (after adjustments) When saw the "new" endo in July he in his "wisdom" suggested lowering my dose,saying a TSH of less than one was not desirable. Having written to my GP,he had to follow this up. Within six weeks my TSH had risen to 24. My GP agreed to return to my dose of 50 mcg and suggested I up it to 60 mcg. So that's the dose I have been on for the last two months. I have another blood test due in Jan.

    But the last episode was so extreme that my hubby wanted to call the paramedic. I've been cold when under medicated but not like this,this was hypothermia if mild.

    I can't understand how this can come on so suddenly,so extremely and then sort of fizzle out.

    I'm due to start an exercise class in Jan,I've been waiting two years for this as it's NHS led, will I be up to it??

  • No, I don't think you will be up to it. It appears you are on far too low a dose for you. It is hypothermia if you were as cold as you state at the core of your being. No-one should adjust our medication only due to the TSH. It's nothing to do with the Endos as some of us need a suppressed TSH to feel well. More damage is caused by adjusting willy nilly according to the blood tests and ignoring the patients plea for help in eliminating their symptoms. It falls on deaf ears many a time.

    Get a new blood test for your thyroid hormones. Ask GP for a Full Thyroid Function Test, TSH, T4, T3, Free T4 and Free T3 and Vitamin B12, Vit D, iron, ferritin and folate. Get a copy with the ranges from the surgery and post on a new question for comments.

    Take your temp and pulse several times a day so that you have a record of what's going on in your body. Our heart cannot function adequately either if meds too low. We need an adequate amount of thyroid hormones in an optimum for our needs, so it can drive our metabolism (T3 does this) and we need sufficient if not converting levo.

    Before the blood tests were introduced and we were medicated according to our clinical symptoms, the dose of hormones was between 200mcg and 400mcg.

    This is why we take our temp:-

    abnormally (typically dangerously) low body temperature

    I hope you feel better soon. It's amazing how we contribute towards training medical students and they definitely don't get trained as Dr Skinner and others of his era did. I don't think his office accepts patients now that he has died, but they are determined to carry on towards his aim of good thyroid education for doctors/endocrinologists for our sake, the patients.

  • Thanks Shaws,I'll do all that and repost. xx

  • Another yes here. It seems that for me at least, weekends are those days you have to feel very ill on so that you can just about get back to work on Mondays. :-o It's much worse in the winter than it is in summer, though. Maybe a Vit D thing?

  • You may be undermedicated as some of us need less hormones if weather is hot and more if it is cold.

  • It is common with someone with a thyroid gland dysfunction and undermedicated. Have you been diagnosed with hypothyroidism? Are you on levothyroxine? What dose?

    Have you had a recent blood test and what were the results with the ranges. (you are entitled to a copy from the surgery and if you haven't had a recent blood test ask for it to be done).

    Also ask for a Vitamin B12, Vit D, iron, ferritin and folat as we can be deficient in all of these which can cause problems.

  • You are not alone, I am struggling too with extra energy required for grandchildren or anything that causes extra stressors, for me it is definitely adrenals, I have also had a private blood test for hormones and both my oestrogen and progesterone levels are low. My specialist said he can do something about this (he gave a quick email when he got the lab report) but I am waiting to speak to him on Monday in person. Obviously as women our hormone levels fluctuate and affect us all our lives, it may pay you to take a similar test to check out your own levels. The other aspect to this is the fact that may of us are older grandmothers than years gone by as our children tend to have their children later, even without a thyroid problem fatigue is something many older people are struggling with, we can expect a lot of ourselves as others can expect a lot of us at times, a difficult one as we do like to see our grandchildren but we need to put boundaries up sometimes too.

  • Hi Joyia,thanks for the reply, I'm very interested in your blood tests,as a post menopause woman I thought female hormones were a thing of the past. I'm obviously going to have to see my gp about this.

    I look after my two youngest g.daughters every Friday because my daughter works so there's no getting out of it.

    Last time I mentioned tiredness to my gp he did say to pace myself but that is easier said than done in this day and age. I must admit my housework has slipped over the last few months so feel I am pacing myself as much as possible.

    Thanks again.x

  • I don't know whether your GP will be helpful regarding hormone levels, it would be nice to think so but so many of us experience being fobbed off, one can only try. If not private tests can be obtained but you need a specialist to understand the results and what remedies are available.

  • Thanks Joyia

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