Who else has Hashimoto's with heat intolerance?

Hi all

I'm a bit confused because it's when you have HYPERthyroidism that you're supposed to have heat intolerance - right?

But I have Hashimoto's (diagnosed in 2005) and I absolutely hate the heat. It affects me dreadfully and I don't know what I can do to change this. I've been on T4 only since 2005. Started at 50mg and then a few years later, my doctor increased it to 100mg where I've been ever since. She's one of those doctors who is welded to test results and won't budge. And it's been a while since I've had a test for thyroid.

It doesn't help that I live in Adelaide where the Australian summers are fierce.

Thankfully I'm off to the UK at the beginning of Feb to get some nice cold weather and stay with my sister. I'll also be arranging a fingerprick test while I'm there so that I can find out once and for all what the situation is with Ferritin, B12, Vit D and Folate etc.

I also have Sjögren's Syndrome and maybe heat intolerance is due to that, or perhaps it's the menopause. I just feel like a hormonal sweaty wreck most of the time - even when the weather is mild.

I've bought Thyroid S online from Thailand and my sister's told me it's arrived in UK. Once I know the test results I'll be better equipped to know what to do. I'm sort of desperate!!

Does anyone else struggle with heat intolerance even though they have hypothyroidism? I'd love to hear from you, and if there's a way of managing it better. Many thanks

66 Replies

oldestnewest
  • Yes, I do. I couldn't live in Australia! I have enough trouble living in France! lol I think a lot of hypos suffer from heat intolerance.

    The problem is that doctors don't like grey areas, they like things to be neat and tidy, with hospital corners. Hypos have low blood pressure. Hypers have high blood pressure. Hypos have cold intolerance. Hypers have heat intolerance. Etc. etc. etc. But, in the real world, it's not so clear cut. Symptoms cross over. I've been hypo all my life, with high blood pressure, and both heat and cold intolerance. And, I've even been told by doctors that I can't be hypo, because my blood pressure is high - and never mind the high TSH!

    But, doctors have very little idea about thyroid, so we just have to say yeah, yeah, yeah, whatever. And get on with it. I'm not sure there's much you can do about it. I don't think it's just a question of dose. I've been on all sorts of doses, of all sorts of thyroid hormone replacement, but never been able to tolerate the heat. Our thermostats are broken, and I don't think they can be repaired. I'd love to be wrong on that one, but...

  • Thanks greygoose. I guess that's just how it is for me too in that case. Busted thermostat and no hope of getting a replacement! C'est la vie, n'est-ce-pas? It's like with the Sjogren's Syndrome that I have - there's nothing to do to cure it so it's only ever a case of managing symptoms. As a teenager and into my 30s I loved the sun and would sunbathe at any opportunity, but now I avoid it. I love the cold and rain though. Oh well - tant pis as they say in your neck of the woods :)

  • Tant pis indeed! :(

  • Hi Tracy.... It looks like we all have rather similar symptoms.... Got Sjogren's as well, and RA... and sadly there is no cure so as you and "L'oie Grise" say it's only a case of managing symptoms as best we can! Take care.

  • Are you off of gluten?? 😬

  • yes you can look for gluten free flours for pancakes theirs gluten free cereal in the usa i think you can order and have gluten free produce mail to you

    mitzicatcampbell@gmail.com calif usa

  • never give up took me 5 doctors until i found a endo doctor at stanford hospital and clinic she ok with me using amour thyroid replacement no side effects and it works for my i only have to take 60mg of amour for hypo try it and see if it helps you nothing to lose

    i hope this helps

  • Bonjour Greygoose,

    This post resonates with my experience.... Indeed am hypo, have been on Levothyroxine (100 mcg and 75 mcg on alternate days) since 1980 after thyroidectomy, and I suffer with heat intolerance (used to love the heat before, the hotter the better!) as well as cold intolerance. After years of normal blood pressure I have developed high BP (suppose getting older does not help that...). You made a rather valid point about out "broken thermostats!

    Out of interest, are you being followed by French doctors since you live in France - probably in the South West (the username giving the game away, maybe?) or do you come back to UK to consult British doctors? If treated in France do you think the treatment is similar to that in UK?

    Looking forward to your answer. Bonne journee!

  • I have been followed by French doctors, yes. And, for the most part, they are as ignorant as British doctors. Which is why I now self-treat.

    For the most part they are as reluctant to prescribe/know nothing about T3, and it's not even expensive, here. For the most part they believe the TSH tells them all they need to know, and are terrified of a suppressed TSH. The main advantage is that it's no problem to get the antibodies and FT3 tested (the labs do what the doctors tell them) and the results are mine, I pick them up from the lab the same day as the blood draw.

    No, I don't live in one one of the nicer parts of France, I live in the Oise, the industrial part. And have done for 41 years, apart from a few years in Paris. The name has nothing to do with anything, really. :)

  • Ah...I see. I did wonder if greygoose alluded to a penchant for vodka of the same name🙂. Salut!

  • Nope. I didn't even know about the vodka at the time I chose the name. Had I know, I wouldn't have chosen it. I hate vodka.

  • Thank you so much for the information. Being French living in the UK for 51 years I can see that French doctors would not be more helpful than the British ones regarding thyroid problems..... That's a shame for you. Are you "fairly" happy with the self treatment ?

    Naturally I am familiar with walking into un laboratoire in France, with a prescription from a doctor for tests and then collecting the results the same day, which is good. And all the tests, be they haematology results or X-rays, etc. ARE for the patients to keep, which empowers the patients, as opposed to here when for too long patients could not obtain their results/notes at all, as you know (keeping the docile patients in their place), and even now the GPs try to pull the wool over the patients' eyes...and one has to be quite assertive in stating they are legally entitled to obtain their tests results and access their notes. Of course GPs do not like it... and feel threatened by patients who do their research and thereby question tests results and treatments.... Of course I fall in this category of "awkward and troublesome patients".... My grandson who is at university and shares a house with a medical student has told me that new medical students are now tutored on dealing with what the medical profession calls "Expert patients"!... those of us checking on the internet.

    I see you are living pretty close to the region I come from: Champagne... and my mother lived in Burgundy. I did go to Paris for study purpose too. Do you often come back home...where is home in the UK?

    It would be lovely finding a better way forward with our health issues, for all of us.

    Bonne continuation!

  • Lol, lessons in how to deal with expert patients! I like it. You'll need to get your grandson to enquire discretely what the students have been advised to do 😉

    I think it is interesting that generally not a lot of people seem to be happy with endocrinology care they receive regardless of where in the world they are and it doesn't seem to matter if they are in the US where they pay of the UK where they have the NHS.

    In fact it was a former college friend who now lives in the US and who was grumbling about her various doctors that made me question why she wasn't happy when she was paying her doctor, surely she should have been getting tip top treatment. Seems not.

  • Hi can't imagine my grandson will tell me really... but will try. How sad it is that medical schools are spending time teaching young medics to "cope" with Expert Patients rather than understanding the role of B12 deficiency. It's like "them V us" and they clearly intend to win! Learning how to shut up patients who question them and refuse to be given anti-depressants, their favourite remedy when pushed into a corner! Feel we're not going to win the battle. Depressing.

    I was not even referred to an endocrinologist after my thyroidectomy.... so there you are... If you're getting old (over 65) and have a complex medical history, am afraid you've had it!

  • No, I've got a Graves Disease, I'm in remission and I was always being promised RAI should I relapse. I spoke to my GP and said I did not want RAI should I relapse, she said I could not be made to have it or refused treatment.

    My own theory is that once you have had RAI you become hypo and they can send you back off to your doctor who may or most likely, may not give you enough levothyroxine or whatever you need to keep you feeling well.

    I became hypo at the very beginning of my treatment and that was really horrid too, as bad as hyper but in a different way, anyway, I had to beg for an increase in levo every time I needed one between endo visits so no way did I want to be rendered hypo by radiation.

    Obviously if for any reason I couldn't take antithyroid drugs - I felt really well on block and replace - then I would have to rethink but as you're finding - when you get older you can feel like you've had it.

    I'm even older than you 68, and I've got several other autoimmune conditions so I sort of know what you mean when you say 'you've had it'.

    As for doctors - a good starting place would be to check their patients' vitamin D, B12, ferritin and folates and to make sure they are near the top of their ranges.

  • Sorry but what is RAI ? could Google it but have already spent too much time on laptop today.. And you're a spring chicken at 68... am older than you, 70!!!! arhhh!

  • JGBH,

    It's radioactive iodine which ablates the thyroid gland in hyperthyroid patients usually causing hypothyroidism. RAI is also used to ablate remnant thyroid cells in thyCa patients after thyroidectomy.

  • Clutter,

    Thank you so much. So much information is quite overwhelming... and in the end one needs to have a great GP to tie all the ends together to sort health issues... but this is not really going to happen. Thanks.

  • you see I NEVER GIVE UP if the doctor doesn`t listen to me i move on took 5 doctor now i have a endo doctor at stanford hospital and clinic she open minded enough to let me try using amour thyroid its natural it was used before they started making synthetic it doesn`t have all the side effects like feeling terrible, nervous ,worrying i know you can`t just drop everything and come to california and go to stanford seek out a endo doctor that will listen to you and feel better.

    Better to ask people to PM you rather than put your email address 😊

  • Linda, I'm not sure this comment was addressed to me, or the OP, but I really don't think you ought to put your email address on a public post. If you want to give someone your email address, put it in a PM.

    Armour thyroid is illegal in France, but I have tried it, anyway. I went to Belgium to get it. And it made me very, very ill. I wasn't able to tolerate any so-called 'NDT' - which, I'm afraid, aren't as natural as all that, and don't suit everybody. For some people, they do have a lot of 'side-effects'. :)

  • Helpful advice. Not all "self-treatments" are safe... Merci Greygoose!

  • I wasn't self-treating with Armour, I was over-seen by a doctor. It was perfectly safe, it just didn't agree with me.

  • Well you're very lucky! You would not get that help in UK....especially not now as sadly the NHS is at breaking point. Good luck to you.

  • I do....Holding hands up real high! Living in a very hot state in the summer doesn't help and no its not Arizona but it feels like that to me. Hashi for 50 years. Was hoping NDT would help but it hasn't helped. Even in winter, I wear only the lightest clothes and no I am not hyper. Good luck to you and I know there are many more just like us out there.

  • Hi Abby3216

    I know - it's just absolutely rotten having this issue with warm weather. I'm going to try NDT soon and I was kind of hoping it would make a difference. Time will tell. My mum also was much more comfortable in cool weather. Even in the English winter she would be lightly dressed while everyone else was rugged up to the gills.

    On the bright side (coz there has to be one - right?) our winter heating bills are probably lower. Small comfort - but I'm determined to find something positive!

  • Tracyd59, I do hope you find comfort. This wonderful site has helped me so much and its wonderful to feel that we are not alone. Even knowing that we are hypo and hot....versus hyper and hot like most are, is quite comforting! Here is wishing you some cool breezes...Soon!

  • Try isol iodine it has help me with hashi

  • Ah, I have Hashi's and I do very poorly in the heat. I have very low blood pressure, fyi. I don't do well in the cold either. You're not alone!

  • Thanks PPower. I'm learning a lot from this website. I only wish GPs were more clued in to thyroid issues. I have high BP and heat intolerance. It's like if you don't fit into their narrow view of what hypothyroid feels like, then they can't cope with it at all, and then basically you're on your own researching the best way to treat it. I've largely given up with my GP and my Rheumatologist because they can't help me much. Thank goodness for everyone on this site!

  • I live in florida usa with hashi thyroid ,have been useing isol iodine and in a year im much better ,

  • What is isol iodine?

    Do you, perhaps, mean TPCS, Iosol Formula II?

    If so, I was interested to see some of the negative reviews:

    SHOULD NOT BE TAKEN IF YOU HAVE HASHIMOTO'S THYROIDITIS 1 DROP A DAY FOR A COUPLE OF WEEKS MADE MY TSH LEVELS VERY HIGH. A DOCTOR SPECIALIST TOLD ME TO STOP TAKING IT AS IT IS VERY BAD IF YOU HAVE HASHIMOTO'S.

    [ Apologies for all capitals - that is as posted. ]

    Maybe this product is not for me or my body don't need it but since I have taken one drop a day a noticed very high blood pressure, palpitations and body aches. So I immediately stop drinking it.

    Its dangerous and gave me insane side effects.

  • Hi tracyd59 I also have hashimotos and for the last 4 or 5 years have been feeling very hot and sweat at the slightest activity. It's a weird sensation as up to point I was always cold and went nowhere without my coat, even in summer. I don't ever remember sweating before that. I was diagnosed in 2013 and started on 50 mcg levo but had symptoms going back at least 25 years. I suppose I put it down to the onset of the menopause as I get wicked night sweats. I'm currently on T3 only but the heat thing hasn't changed really😊

  • Hi Singoutloud

    I think that part of the problem is knowing whether our symptoms are due to Hashi's, menopause or any other autoimmune issues we might have. I'm coming to the conclusion that it's impossible to untangle it all. Sigh.......

  • I know what you mean, autoimmune illnesses seem to share so many of the same symptoms it's hard to tell. I also have Pernicious anaemia and it's a constant guessing game as to whether its that or the Thyroid that needs attention. Hopefully you'll have a bit of heat relief once you get here to chilly old England.☺️

  • Yes I do , love current cold weather for walking in.

    Less often I can also feel cold

    🤔

    Enjoy you trip here for a coolind down session x

  • Thanks Gcart. I can't wait to get out in the chilly weather in a couple of weeks time. Sussex here I come!

  • Me too. I have always suffered worse with heat. I dread the summers coming. I never found anything to help with this

  • Thanks Sausage Dog, so it would seem that it's common to have Hashi's and be heat intolerant. Maybe there's a business opportunity here somewhere - seasonal house swaps between Hashi's and Grave's sufferers! Seriously though, at night here in South Australia where it's now summer, I put a wheat bag in the freezer and then use it at night on my chest or tummy to cool me down. Necessity being the mother of invention and all that :)

  • I never thought to put those wheat bags in the freezer. I will try that :)

  • Wrap them in a plastic bag first then freeze them. It helped. They work well if you put them round your neck like a collar too.when chilled. Good luck!

  • I LOVE your house swap idea!

  • I don't have Hashi's, but have been hypothyroid for many years. I feel the cold to the extreme of losing sensation in my skin, but equally, in a hot environment I break into a sweat! Definitely have a dodgy thermostat!😳

  • I must say I am not quite as bad T3 added?? Maybe vitamin levels better ?? Worth exploring more🙂🙂

    At night I deployed my imagination and thought of lying in the snow, Crisp and white and COLD. Also my kindle was cold enough on my tummy to assist a little😡

    Lying with no nightwear on, couple of winters ago minus 2 or 3 still not much relief

    Not a pretty picture, sorry 😀

    Do check all above is good though xx

  • Mm...it helps to have a vivid imagination. I like the idea you employ of visualising snow! Whatever gets us through the (hot) night!

  • Hi, yes I become hot very quickly, especially when exercising and have had an underactive thyroid since 2000. I know I am not medicated correctly but have a GP who sticks to the lab tests and says 100 mcgms of Levothyroxine are correct for me. However, I still suffer from the symptoms of having an under active thyroid, but have always overheated quickly since having thyroid problems. I am usually the only person at the cold and windy bus stop in the winter feeling hot and clammy, whilst everyone is shivering. Am post post menopausal, so it can't be hormonal. So like you I am mystified and the GPs have no idea either why I always feel hot, as they seem to have so little knowledge about the condition.

  • Deeseona

    I share your frustration at having a doc who is blind to everything except the test results. I'm confident though that with the help of fellow thyroid problem posters on this site, that I'm going to take control of my situation and feel better eventually. Don't lose heart!

  • It seems a bit superfluous at this stage to say "me too", but yes, me too...I've always felt hot and sweaty with the smallest physical activity, apart from when I'm very cold and can't warm up!

    I'm on T3 only, and though now I can cope better with the cold, up here at the north end of the Pennines, I still don't cope well with temperatures above 16 degrees C. Added to that I'm post menopausal, but still have awful hot flashes and night sweats.

    Hope you enjoy the 'cold' in Sussex, but for me the thought of travelling any further south than Darlington makes me worry about the heat. :-D

  • Thanks Hillwoman. I'm about the same as regards heat tolerance. I'm ok at 16c. Here in Adelaide it can get to 40c in Jan/Feb. Once I'm gown to my undies and I'm still boiling hot even with aircon, I start losing my marbles ever so slightly! B****y hormones! Isn't it like 9 out of 10 people with auto immune disorders are women? Gotta be those treacherous hormones. 😠

  • IMO I think having hashis makes our body thermostat "cock eyed" period! Whether it be heat or cold intolerance, I'm learning that the hypo = this and the hyper = that, is just codswollop!

  • I agree. There's so much variation in our individual bodies and responses that there's no simple remedy. So we have to take our health into our own hands coz GPs don't have the answers necessarily.

  • Hi tracyd59,

    I had my thyroid removed due to Hashis's 15 years ago.I was on thyroxine and T3 until recently when my doctor decided it was too expensive and I have just had thyroxine.Since then I alternate between hot and cold all the time, spend all evening changing my top! and am sweating a lot more than when I stopped HRT early last year,my blood pressure can vary between (top pressure) 140 and 180 in a matter of minutes. I am sure the T3 was helping with these symptoms, and am hoping to get back on it one way or the other, if the doctor won't prescribe it again then I will have to buy it myself.

    It might help you if you could get your doctor in Adelaide to prescribe some T3, not sure on the situation out there regarding T3, not many doctors in the UK will now prescribe it because of the cost here.

  • Thanks blondpalomino. Interesting what you say about your BP. I also have these wild swings in BP and my doctor wants to increase my BP meds. Which I am absolutely not going to do. I'm going to have a private blood test in UK shortly to see what's going on and take it from there. I think it's possible to get T3 on prescription in a compounded form in Australia, but my doctor is blinkered by test results so it could be a struggle to get her on board with the idea of T3. And frankly I'm so knackered from it all I don't know if I can be bothered to haggle with her. She's great in many other ways for other issues but on thyroid she's a stick in the mud. Aarrgghh!

  • Hi Tracy,

    yes very advisable.You could always ask for a referral to an endochrinologist to discuss the T3,they seem to be a bit more flexible regarding the test results.I am not on blood pressure medication at the moment ,if she wants me to go on it I will say that it was fine when I was taking the T3!

  • Indeed we're not going to win with GPs... wherever they are, it seems! Obviously very little money is spent on researching thyroid functions and disease... and yet with the pituitary the thyroid control our metabolism.

    Do hope your tests in UK will help you make sense of your problems, even if they don't bring the perfect solution. Enjoy your time in UK and very best wishes to you.

  • I'm like a furnace and need the bedroom window open, even in the dead of winter.

    However, I love the sunshine because I can wear fewer layers of clothing. It also lifts my mood. I hate humidity as it feels as if I can't get enough air into my lungs.

    I'm so glad you started this topic as I was able to show it to my husband who thinks my system is seriously 'cracked'. Thank you.

  • Thanks Jane Pound. Same here-windows open in winter. Mind you, winter in South Australia is very mild -13-15c in daytime and 9-10c at night. My partner is completely opposite. Always feels cold. So there's me with a thin sheet and iced wheat bag and ceiling fan going hell for leather and the other half has two duvets going on!

  • That sounds so familiar. I live in the U.K. But have lived in the USA. The advantage I had there was air conditioning. I have suggested separate duvets - tog 4 for me and 15 for him but that didn't go down well.

  • To clarify: It looks like I wrote minus 13 but I meant 13c. Which is not cold at all for winter weather.

  • me too... Get very hot n sweaty even in winter I hate it. My make up just runs off an my hair frizzled up! Equally I can get very cold, but the heat is definitely worse for me 😓 x

  • Yes i too am hypo i cant deal with heat much prefering the cold ..

  • hope u find an answer as i also sweat buckets have under avtive thyroid hormono had a stroke one min sam fine next sweating off work just now as was in office and line manager took a look at me abnd said u shouldnt be at work like that as a was soaking and she thought it was to do with stroke tryed to point out to hur a thought it was age related but she wasnt intrested think am going to go see if a can find any herbil help as a cant cope with the consint sweating and doesent matter how much deoderant a but on even prescription foll on doesent help

  • Yep, I'm hypo now after rai treatment and my thermostat is definitely broken. Break into a sweat with the slightest exertion, dreading the summer, and I used to be such a sun worshipper. Spend most of my time dripping and hair frizzing I hate it! Would love there to be a simple cure😏

  • I HAVE HYPO THYROID WITH GLUTEN PROBLEM AND HASH WITH GLUTEN YOU DON`T EAT ANYTHING THAT HAS REGULAR FLOUR YOU HASH SHOULD GO AWAY WHEN YOU TAKE THE REPLACEMENT.I TOOK SYNTHETIC FOR AWHILE FELT TERRIBLE ON THAT I READ ABOUT AMOUR ITS NATURAL AND I DON`T HAVE THE SIDE AFFECTS OF THE OTHER IT TOOK ME 5 DOCTOR BEFORE I FOUND A ENDO DOCTOR THAT WOULD LISTEN TO ME MINE IS AT STANFORD IN I KNOW YOU CAN BE THERE . FIND YOUR SELF A DOCTOR THAT LISTEN TO YOU DON`T SETTLE FOR LESS I ONLY HAVE TO TAKE 60MG TAKE A BLOOD TEST SEE IF YOU REALLY NEED THAT MUCH REPLACEMENT

    GOOD LUCK <email address redacted>

  • I have had a great deal of luck with NP Thyroid (also known as "Acella), a natural thyroid hormone. Armour has been messed with each time another company bought them out, and a lot of people have reported suddenly getting their symptoms back as a result. I have never had any trouble with NP Thyroid. Do your research (a google search) on why natural thyroid hormone is better than synthetic. Then read this page about the differences between the natural thyroid hormones: stopthethyroidmadness.com/a...

  • lindabcampbell,

    Please do not post in all capitals. It is considered by many to be shouting and may be taken the wrong way.

  • Sjorgens - my rheumy thinks I'm developing it, I've had really dry eyes for at least the last forty years but recently Ive noticed fed when I take off my clothes things like leggings and my vest and pants are covered in powdery dust from my skin. That's fairly recent. My hands have started to feel like sandpaper too. Do you (or anyone else reading this) get that with your sjorgens?

You may also like...