Internal Thermostat gone wrong

Hello again my next enquiry is about temperature control. I seem to spend my time alternatively literally melting in what I am assured are quite normal temperatures or seconds later shivering with unbeatable internal cold. It's impossible to be comfortable for more than 5 mins at a time. Is this part of Hadhimotos and can it be fixed?

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  • Hi im experiecing the exact same thing most days.Im also very intolerant to any perfumes or aftershave. My family are getting seriously annoyed with my moaning. But the effects of itchy eyes tickly nose makes my life miserable. Its as if Im not comfortable in my own skin.Any advice welcome.im on 40 t3 and 75 t4.

  • The Levo T4 is your problem read the side effects (itchy eyes etc) on the packaging - NDT is much easier to live with

  • My experience is that levo or NDT, I have the same experience of boiling or cold, although mainly, I get hot.

  • How old are you? Because I used the exact same imagery when I was menopausal - it felt like my internal thermostat was broken. Now I'm a couple of years past that but I still get some hot flushes which I assume are related to my Hashimoto's, and what people don't know who haven't experienced them is that hot flushes are often followed by feeling really cold.

  • Hi Steni

    I have similar issues too. I find cold weather intolerable and my hands and feet go blue. I find it impossible to get warm at times. During the warmer months I sweat on my face and head when everyone else is perfectly comfortable. My hair looks awful and sweat trickles down my neck! I am on 60mg T3 a day. I have been like this for many years and have told my endo that my thermostat is broken but they cannot help. Let me know if you get any help x

  • Taking T3 alone gives me cold feet. I now use 2-3 grains of NDT daily and 10mcg T3 just prior to stressful, cold or high energy activity - exams, sailing, swimming etc. My thyroid supplement requirements change significantly between days - which is why I find it so funny we get a TSH once every 3 months. We should have a little machine like diabetics and be testing every day - but I dont think they make one

  • Hi I'm new to this side of it. PA sufferer. But i have the same problem when ever i eat my temperature goes through the roof, sweat running every where. My doctor blamed menopause but i'm not convinced as im 55 and went through menopause at 42 it only when i eat. On Levothyroxine 100mg.

  • They try to blame menopause but i have been on hrt since befor i got cancer and i sweat more now than ever so embarrassing

  • I'm the same.

    I'm trying to see if there's a trend, so now I'm keeping a temperature log.

    I take my temp when I'm either hot or shivering and then write down in my log (I use notes on my iPhone so it's readily accessible)

    I write the time, what I'm doing, the weather, time since last food, alcohol, and time since last thyroid meds.

    If they're around I ask my husband and/or daughter to take their temp - it's often half a degree above or below mine.

    The late great Dr Lowe was a massive fan of temp checking as the average temp determines when a person is under or over medicated. I'm only 3 months on NDT and I really wish I'd kept a log from the start. It's pretty hard to remember to do it, but I'm hoping to see a pattern which could resolve these swings.

  • If you are on NDT and running a temp under 36C you aren't on enough. I use my Temp as an hourly guide to my NDT and T3 absorption. My basic routine is 7am 1 grain NDT, 2pm 1 grain , 10pm 1grain. If I have cold feet or hands after this, I take 10mcg T3. I carry a small stash of T3 in my wallet. 4 out of 7 days I end up taking T3 at 3-4am.

    The opposite is true too, if I have hot or tingling feet I start dropping NDT out. If I'm just sitting around - I only need about 2 grains perday.

  • Hi Michelleberko

    Please post whether you find any relationship between hot spells and body temp Personally, when I looked at this, my body was still at 36.2 or less despite boiling and sweating profusely.

  • Hi Michelleberko. For me I don't think there is a relationship between breaking out in sweat and my body temp. Once a week I will be laying in bed at night and suddenly I have to throw of the covers etc. Where as keeping a temp in the 36's is a constant battle for me. I'm sitting at breakfast writing this and I'm 34.7 and have been for the last 2 hours, I've taken 3 x 30mg NDT since midnight and thinking I need more but really don't want to go hyper. Since writing my original post (above) I have struggled to take enough NDT, I'm down to about 2 grains per day before I go hyper.

    Two issues -

    1. I have been trying a (Kelp, Iodine 160mcg, Selenium 100mcg, D3 1000IU) Thyroid supplement and my personal dosing rules get thrown out the window each time I take.

    2. My daily dose was really veriable anyway. - Until the Iodine thing, a quiet day in the office was a 2 grain day, but if I went sailing or dirt bike riding it's a 3 grain day. Add Iodine and I go hyper at 2 grains no matter what.

    Conclusion - I'm either having a bad reaction the Iodine, or the Selenium is allowing me to convert T4 I couldn't normally access and I'm overdosing on T3/RT3 above 2 grains.

    I will record my temp next time I get the night sweats and let you know.

    James

  • I have a similar issue, but, although I have pernicious anaemia (26 years + 5 before dx) and Hashimoto's (16 years) I did always have a problem with temperature control, right from childhood. To some degree it seems that the humidity affects me more than the heat. I haven't actually taken my temperature, although it was of course low when I was undermedicated/undiagnosed.

  • Hormone imbalance beyond just thyroid.

  • I had my hormones checked and all okay, but I am on estrogen and progesterone cream.

  • the NHS version of 'okay' and the body's are two different things, there are more complex hormone balances than sex hormones, there's DHEA, Cortisol, etc. Why are you on HRT creams if your hormones are okay? Are these bio identical hormones? You need to get your body in balance, that might be through diet, eg paleo, or through acupuncture or something that re-balances your body. It's complex and complicated and individual.

  • My hormones were low but Endo said that was normal for someone age 72. I take the Estrace cream for dryness/bladder issues. I tried the progesterone cream and then the pill to see if it would help heat. It didn't but did help me sleep better. The pill worked too well so went back to the cream.

  • I had a very bad reaction to Thyroxine after my TT. I felt my internal thermostat had gone. Boiling hot & then freezing cold. Looking back I now realise the Thyroxin started my early menopause & completely stopped my monthly cycle for the months I was on it. I felt so ill with multiple side effects like I was being poisoned by the Thyroxine. My consultant didnt believe a word I was saying even when I was boiling up in front of him. Eventually I managed to change my consultant & I'm on T3 only. My monthly cycle started again & now im going through "normal menopause" & its the same feeling like my internal thermostat has gone wrong

  • Get on enough NDT and you feel much better - almost normal

  • @ Steni

    I too suffer from the two extremes of sweating profusely and freezing cold. I'm always cold to the touch but for my hands which can be burning hot. I take 125micro grams thyroxine. Doctors should know that this not the same as hot flushes. They heat does not build up in a wave through the body then subside. It just is and it's as if it's like part of my life now but incredibly embarrassing when I have to decline what often seems like the simplest of things.

  • I too have hot dry hands (and hot feet) although my tummy is usually very cold. My face goes very red and sweats profusely on exertion but the rest of my body hardly sweats at all . I take kitchen paper to my exercise classes as otherwise sweat just drips off my face onto the mat! In very hot weather I tie up my hair and plunge my head into cold water so my hair is wet- rather than go around with a red sweaty face. I'm post menopausal and have had Hashimoto's for about 15 years. I take 137.5 micrograms levothyroxine. Occasionally I get very cold and sleepy and want to hibernate - but not often at the moment. I'm trying to get my doctor to prescribe T3. He's referred me to a herbalist who's given me a tincture of ashwaganda and rhodiola. It seems to be helping with my energy and sleepiness.

  • Don't shoot the messenger but if you are avoiding Nightshade family plants, Ashwaghanda is a nightshade.

  • Oh that's interesting (Sorry- I've only just seen your reply Sue) Luckily I'm not avoiding nightshades . I 'm strict about not eating wheat as it really upsets my digestion - and I also avoid cow's milk (I eat goat or sheep yoghurt or cheese) as it seems to give me a stuffed up nose. I feel life has enough sadness without adding more to the list of things I don't eat

  • I am 60 and also have the problem with severe sweating. I can just be in a meeting and it suddenly starts and my face is visibly wet. So embarrassing. I take 50mg levothyroxine. I also have ray aids which means I have the freezing hands and feet. If anyone finds a solution that would be great

  • Me too. Either too hot or too cold!! Also find that humid weather is the worst and feel weak and worn out. Oddly enough I have begun to notice that my face sweats but the rest of me doesn't seem too. I have Hashimoto's and have a history of chronic mercury toxicity and wondered whether this might have affected the part of my brain responsible for temperature regulation. Way past menopause and seems to be getting worse. Very interested to hear that other thyroid members on the forum have the same. I've often wondered whether it is an adrenal issue as I definitely have 'weak' adrenals. What to do about it - no solution yet unfortunately.

  • Well now....me too, always so hot, boiling inside! Not cold, usually hot and then sweat dripping down my face and only on my head!! What IS THAT? I just read the Vitamin D deficiency is responsible for over sweating so I have just upped my Vit. D3 and B12 for my numb hands which are driving me crazy! This hot weather in London was too much, fans on all the time, my electric bill!! Is there a reason for this, adrenals? Does anyone actually know?? I am on T3 only and have been for 4 years now, left that horrid levo behind...any one know why our thermostats are broken? And the sweaty head??

  • Just the same as me, before Dx I expected it was thyroid related but seems not going by people's lack of reason for it. It's not actual old or heat I bet my real temperature doesn't change just an intense feeling and real sweat on the head and mainly neck!

  • Reply to MSC56 : I am thrilled to know we are both going through this together, albeit I know little more than you do as to the profuse head only sweating I have a theory. It goes as follows: the brain naturally knows that in order to survive it must protect it's self from excessive heat, stimulation and trauma. Therefore, when our body tempurature rises ( which is often the case with any or all the autoimmune disorders), the brain knows to pour on the sweat specifically on the head to keep from overheating, especially while asleep when we cannot override the autonomic nervous system personal inconviencesand remain aasleep, as a protective measure of self preservation. so, yep our head super wet, mine itches due to over load of salt in my sweat from the adrenal

  • Mine itches too, wow, thought that was weird as well...so perhaps that is true but I have a feeling both are candida issues...and that is another issue for us with Hashis, they say it is all about the gut...so no gluten, wheat, diary and so on...hate all this, sometimes I honestly would rather be dead then this slow torturous ride to it anyway!! I don't know what else to do except eat lettuce (washed ever so carefully of course to avoid pesticides!!) and take anti candida medicine like Nystatin. My numb hands are really a major problem too right now and I am slamming my body with B12 and all the B's in the and just started taking Thyroid Essentials by Swansons, which is cheaper then the Nutri thyroid and adrenal supplements Dr. Martin Budd (his formula) prescribed for me....although it helped the tinnitus, nothing else improved for me, nothing at all and I was on all 4 of his supplements for 5 months...at that point I threw in the towel and got my own supplements off of HealthMonthly.co,uk and they were 1/3rd the price! The guy wrote 7 books and he could not help me, albeit he is an older gentleman now...but still...it was just a waste of money and time and one hopes it would have worked. I really have NO idea what to do to heal myself. I have tried everything! I am 100lbs over weight now, thanks to my quitting smoking 2 years ago and plantars facititis for 5 months on my left foot so I could hardly move! Now I wonder if ANYONE actually gets well???? ANYONE??? and what did you do to get there??? Head sweating, no eyebrows, obese....aches and pains and my Endo says only 50mgs a day of T3....I refuse to take T4 as it made me sick as a dog (yes, even sicker!) for the 8 years I was on it. I put myself on T3 and it is better...but clearly no cure! HELP!

  • Hi, I have underactive an under active thyroid last 20 + years, and on 200 mcgs, in the summer I am cold, and can even shiver and get goose bumps and legs and hands freezing cold even in temps of 30+, in winter, I am just so cold it can be unbelievable, even those my other half is really hot, I am so cold??? just put up with it, can even be sweating but still cold? any ideas???

  • So true I share this too

  • I have that same issue. One thing that has helped is high dosages of B vitamins. But I still melt when other people are fine. I have been on Levothyroxine and switched to Armour with no change in the heat aspect.

  • My doc did prescribe Rubinul which is supposed to dry you out. I could take 3 but after 1 tablet, it dried my sinuses so bad that I had awful sinus headaches and had to stop.

  • That sounds extreme

  • @Raddybell

    Keep increasing your Armour slowly until you go Hyper, for me it's about 3 1/2 grains per day. You will feel Hyper sneaking up on you, you'll feel extra warm, twitchy limbs, tingles in the feet and hands. Then have a day or two off NDT to let it dilute down to normal levels. Now start taking the Hyper quantity minus 1/2 grain. This will be about right amount for you. It far far exceeds the quantities dictated in the conversion charts (100mcg=60mg). However your thermostat will immediately work properly . Make sure you keep up the high doses of B, D and Iron etc. I'm experimenting with a iodine and selenium supplement but it's too early to comment.

    I also take NDT with 2-3 table spoons of Apple Cider Vinegar in a glass of water. I found I absorb the NDT better and need less.

    Warning if you dose NDT like this you are like a full laundry tub - washing machine dumping water in, drain draining as fast as it can, very easy to have an overflow situation, keep and eye out for hyper symptoms.

  • The hypothalamus controls body temp so this must be being affected by our illness. Hypothalamic involvement seems to be strong in central hypthyroidism, where TSH is fairly normal and the pituitary is not doing its job.

    What the answer to it all is I don't know. Chance of getting NHS to look at this sort of thing must be near nil.

    I hadn't realised that hypothalmic dysfunction can show as dementia, and appetite changes .. I'm wondering now if that was a factor for my poor mother. Hmm, genetic pituitary dysfunction... that's some merry hours of Googling ahead.

  • OK, so far, hall marks might be .. child with motor and attention probs, tick, delayed puberty, tick .. 16 .. impaired stress tolerance, tick, likely adrenal issues, tick..

  • I've had this since I was little...even as a child I would sweat profusely! I was at a pantomime when I was about 5 & was on my brothers shoulders when he asked me if I had wet myself...nope I was just sweating!!! I've been like it the whole time, & also if I get stressed or anxious its worse, & also when I eat a hot meal or drink a hot drink. I was diagnosed HypoT when I was 23....I'm now 44.....even now my thyroid levels are optimal on Naturethroid i'm still the same...very rarely, usually when I'm extremely tired I will feel really cold, but then when I go to sleep I then totally heat up like a furnace!!!

  • Docs don't seem to understand how miserable and embarrassing the sweating is. Summers are wasted because you can't spend time outside. Other people are fine while you are dripping.

  • Yes, am cold when others are hot, and vice versa. On 75 levo alternate days.

  • I am the same way, dripping sweat in summer when others around me are not. Rarely too cold though. My body temperature has been subnormal a long time, usually 97.6 or lower on first awakening. They tried Wilson's Protocol on me to adjust my thyroid but it didn't work. Now I am on "optimal" Naturethroid, 1.25 grains 2x/day and also progesterone. Tried testosterone and estrogen in addition and it was too much. I am 65 and post menopausal. I am still overly fatigued but this regimen seems the best they can do. I occasionally go on the Dr. Hyman sugar bust diet as I am diabetic or autoimmune diet as I have Hashimotos. Eating homemade hormone free organic chicken or beef broth from slow cooked bones heals my gut and I do feel better but hard to stay on this diet when no support from those eating with me.

  • Hi. Me too. I've been on Levo for over 20 years after being wrongly diagnosed underactive. What was actually wrong and only recognized 4 years ago was a growth on my Pituitary gland which was removed with a transnoidal op. It left my PG so badly damaged after years of being squashed that it doesn't work and doesn't produce any stress hormones so I have to take Hydrocortisone tabs too. I have got a brilliant Endo but haven't seen her since the sweating started. Same as the other lady I know these aren't hot flashes as not in waves.

  • Hi,

    Yes I also get the same thing. So annoying when you're at work, especially because I work outside in the elements. But yes it is a thing, my Nan was reassuring me that it happens, it's nothing to worry about its just irritating. She's had to spend most of her life battling with it :/

    Hope this helps

    Emma

  • I am unable to regulate my temperature when my cortisol is low (e.g. before I got on HC and now & then when I overdo it and don't raise my HC enough). I go from freezing to sweating to freezing regardless of the dose of thyroid meds.

    Some other symptoms of cortisol issues:

    stopthethyroidmadness.com/a...

  • no guarantee's but my cortisol issues got better by the following.

    1. Get Vitimin Supplements all going, B, B12, D3, Iron etc as STTM guide

    2. Couple of shots of Apple Cider Vinegar each day

    3. Get to bed with lights out 10pm and no electronic gadgets phones iPads after 8pm - read a book

    4. Quite Coffee, tea, soft drinks, caffeine drinks, stimulants and drink at least 8 full glasses of water per day

    4. If you are Hashi quit Gluten and Milk.

  • I am so the same :( i had medalory cancer nobody has any answers but my sweating is so bad it has stopped me from being able to work

  • It's a side effect of Levo......

  • I am not on Levo or any T4 and still have it so no...it is not.

  • Maybe so but it's still a side effect :)

  • @MSC56

    So what are you on then, I bet your on T3 or under medicated NDT

  • Completely agree - can't believe all these people put up with Levo.

  • Just seen that head sweats are a symptom of rickets or vitamin D deficiency and I had vit D deficiency over the winter.

  • Yes, I read that too which is why tomorrow I am back to my GP and going to ask for a Vit D test...also some others...endless, endless and more endless blood tests!

  • Wow look how much interest and knowledge this post generated. I'm glad I asked the question I've learnt so much.

    For me I think the jury's still out on why the internal freezing feeling happens one minute and the dripping head face and neck the next. I suspect it will be fixed when I'm dosed properly with the drugs for the Hashimotos. Watch this space!!

  • I have been suffering this since I was in my 40s, and first had hypo symptoms. My head, face and neck sweat so much I can't wear make-up or even face cream sometimes. My upper body sweats too. My bra gets soaked. So does my hair. I look as though I have been under the shower. Sweat runs off my face, drips off my nose, its terrible. I cant tolerate temps over about 60f, and cant tolerate cold either. The recent hot weather was hell. It exhausts me, too. Its worse if I exert myself. The only time I dont sweat so much is in the winter, and then I am freezing. Its been better since Ive been taking T3, but still quite bad sometimes.

  • I wake up burning hot particularly my legs but not sweating, spend a lot of nights with no covers on. I also then break out in a sweat after morning shower to the extent that sweat is trickling down my back.

    I also struggle with humidity and have spent the summer in the office clammy and uncomfortable. Then in humid conditions my ankles and lower legs swell up.

    It's a nightmare😩

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