Hi just wondering if anyone else suffers from extreme heat/cold intolerance? In thr last few months I have been suffering from unbearable hear episodes. Regardless of the outside temperature I feel unbearable hot. Requiring the use of a fan and having the windows open. Even in the winter. Anyone ideas why this is happening?
Heat intolerance : Hi just wondering if anyone else... - LUPUS UK
Heat intolerance
37 Replies
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It happens for some people with some a/i disorders but it can also be an effect of some drugs. Corticosteroids are a common culprit.
in reply to PMRpro
I am not on any corticosteroids at the moment. It's so unbearable at times. Cannot sleep due to the heat. Even with a fan on 😦
PMRpro in reply to
I know the feeling - I had about 5 years of toasting and not helped by a husband who is always cold, and more so when unwell. Layers and a cold (bed)room is about the only answer I fear.
Yes, I cannot tolerate heat or humidity due to autonomic dysfunction. Do you feel light-headed when standing? Make sure you mention your symptoms to your doctor. There can be autoimmune-related autonomic issues. I have learned tricks to cope and happy to share. Kh
Hi Sophie2009
I too have these horrific conditions.
They can be hormone related from menopause heat flashes or hypothyroidism freezing
Raynauds freezing cold with hands/feet that blanch white due to capillaries clamping shut stopping blood flow.
Also
Erythromelalgia/Inherited Erythromelalgia causes the most awful burning 🥵 up sensations.
I’m across the pond in the USA 🇺🇸 and you can visit a world renowned clinic site here known for excellence in diagnostics and care to research your symptoms. I’m not successful yet in doing links sorry.
mayoclinic.org
and for burning 🥵 sensations
erythromelalgia.org
burningfeet.org
For rare diseases
NORD
These sites should be of some help
The weather is a big trigger for me too.
I empathize with you. We can always put on more layers and add heat when chilled/cold but when burning 🥵 up you can only do so much.
I’m willing to chat if you need me.
Take care best wishes Sophie.
😊🌿🌸🦋🙏🤗💗😘😇🕊
in reply to honeybug
Hi I think I would much prefer to be cold all the time. I have a heated blanket fir that which helps but when too hot there's nothing that helps. Dreading the summertime. Don't know how I will cope when it's warm as the winter is hard enough 😭
honeybug in reply to
Apologies Sophie2009
I’ve been very ill these past months.
While purging my old saved emails I found your unanswered reply.
I agree 100% that being cold is much better because layers and heat can be applied...versus being too hot there is no relief. I hate the latter with a purple passion as I say.
I hope you’ve been ok since you r last post.
My thyroid has almost stopped functioning and I’ve really struggled to just exist. I got behind in all my emails well everything.
Sending gentle gentle hugs and well wishes.
EJ 😊🙏🤗💗😘👼🕊
in reply to honeybug
Hi honeybug. So sorry you have been so ill. I hope you're a bit better now. I still am struggling with the temperature control. It just had a mind of its not now and it's all over the place. Cold when hot and hot when cold or vice versa. Driving me crazy now 😔 X
honeybug in reply to
I’m sooo sorry sweetie.
This really stinks doesn’t it.
Always have to dress in and peel off layers. I’m constantly doing this with my IEM. Salt intake really jacks up the heat and the neuropathy pain.
What meds have you tried?
I take Paxil for the worst of the heat and pain and so far it has kept it away from my head...thank God.
Would you like to exchange email addresses just in case the HU is down for some reason?? I’ve done this with several people on HU and it makes it easier for me to keep in touch and send ecards too.
I’m sooo sorry you’re suffering so. I’m miserable atm my thyroid is dead and I’m on increased synthroid meds testing in 6 weeks to see if the increase is enough. I’ve been like a slug 🐌 almost no energy and can’t sleep much.
Hanging on with white knuckles.
Sending you gentle hugs and love.
EJ. 😊🙏🤗💗😘😇🕊
My Mother has Rheumatoid Arthritis, but since she had her strokes, the bleeds on her brain actually caused the chemicals to change in her body which effectively put the poor thing in the menopause again!
I have fibromyalgia and am being investigated for sjögrens, lupus and/or Rheumy and I have terrible night sweats. The first time it happened I honestly thought I had wet the bed, my sheets, pyjamas and hair were soaked. I also get a rash on my skin when I go outside into the sun or sit in front of a log fire for too long and now can’t go into a freezer to get food - my poor husband has that job now. It just hurts far too much. I know these things are different to your symptoms but I thought I would just put my 5 eggs in.
I hope you get it sorted my lovely and find out what’s making you so uncomfortable. Best Wishes 💖🌟 xxx
in reply to Peppytea
Thank you for your message. I just don't understand what's happening. All through the summer I was frozen. Even on the hottest day. Now complete opposite in winter.
I developed a sun allergy a few years ago. Never thought much of it. But could be related to all the other symptoms.
Yes, fluctuations in heat/cold affect me greatly.
Have you had your thyroid tested? Untreated hypothyroidism can cause overheating as your thyroid is responsible for controlling the body’s interval thermostat.
Another thought is, are you going through perimenopause or are you in menopause? Night sweats and hot flashes are definite symptoms. HRT can help. It took a while but I’m now on the proper dosing of estriol/estradiol as well as progesterone in the form of a custom compounded cream and it has helped eleviate the overheating, hot flashes and night sweats.
in reply to milkwoman
Hi i have had my thyroid tested and it's in range at the moment. To have 6 months tests as I am at risk for devolving autoimmune thyroid disease. No i'm not menopausal or pre menopausal. I should add that I am 36. Too young for that I would think. Plus my estrogen levels were on the high side not low.
milkwoman in reply to
FWIW, my blood results never showed hypo. I was diagnosed and treated based upon symptoms and Levothyroxine changed my life.
All the women in my family (including myself) are estrogen dominant. You may be as well and could benefit from progesterone to balance things out. Just recently, when I was still getting overheated (with little exertion) and also having night sweats, upping my progesterone dosage while keeping estriol/estradiol the same completely eliminated the episodes.
in reply to milkwoman
No one will prescribe me medication for my thyroid as my TSH and T4 are within range. My estrogen levels were well above range but not had them checked again lately. I can change instantly from extremely hot to freeling cold. Have you noticed any changes with your hair texture? Mine seemed to change instantly. From healthy and in good condition to extremely dry brittle and breaking easily.
milkwoman in reply to
Hypothyroidism as well as hormone imbalance can cause dry brittle hair. I experienced a little bit of that but my hair is good now due to being properly medicated on both fronts. I can actually tell when my thyroid meds are “off” because my fingernails will get thin and break and my hair ends will split. Usually means I need to increase my dose slightly.
I was lucky to find a doctor to treat me. He was Dr. Kenneth Blanchard - a pioneer in the field. I now see his predecessor since Dr. B has passed. He saved my life and listened to me when no one else would. I had lost the outer third of my eyebrows and had many other symptoms related to being hypo. My blood results (TSH) always came back “normal” or even, more slanted towards being hyperthyroid so my regular GP wouldn’t treat me. It’s sad really. But my case has made my GP aware of patients like myself and he even offered to take over my treatment when Dr. B passed and at the time I didn’t know there was another doc he trained to take his place. That’s progress!
Oh and yes, I fully understand the hot to cold to hot phenomena! It was terrible for awhile but now much better.
in reply to milkwoman
I'm glad you were lucky and got some help. I an getting beyond frustrated with not getting any answers. The hot spells are still unbearable. I paid privately to see an endocrinologist specialist who is concerned that I have Lupus but symptoms of that can also overlap with thyroid disease. So just kind of stuck at the moment. Do you suffer from reynauds too? Just started on medication for that which is helping a bit.
Are you in the US?
NO, no Reynauds (but my sister has it along with many other AI disorders). AI runs in the family.
Right after my hypo DX I was diagnosed with lupus (SLE) and Sjogrens. Neither are fun. I’m on Plaquenil for both. I also show auto-antibodies for APS (Hughes “sticky blood” Syndrome) but no formal DX. I don’t test positive for thyroid autoantibodies but my endo treats me as if I have Hashis since AI is in my system.
So, I’m a complicated case. You can read about my journey in my profile.
It took 2.5+ years of feeling really really awful to get any sort of DX so I completely understand your frustration. The best advice I can give is to educate yourself as much as you can and keep fighting to be heard until you find out why you are not well.
Hugs.
in reply to milkwoman
No. I am in the UK. I Google a lot but that's probably not a good idea either. There's nothing else I can do at the moment except wait for appointments. I am currently off work and will probably lose my job too. My job is very physical which I can't do now. Along with flare ups of flu like symptoms when I am in bed for days. It's not much fun.
milkwoman in reply to
I’m so sorry you are gone through this. Many here can relate. It certainly sounds like lupus to me. Have you had an ANA test? I hope your upcoming appointments give you some answers.
in reply to milkwoman
I had one last year in may. It was positive at 1.160 homogeneous pattern. They can't retest till 12 months later. Things have changed since then so it's maybe a higher ratio now.
milkwoman in reply to
Okay so that’s positive for lupus. Wonder why you weren’t then sent to a rheumatologist for full panel? Based upon your symptoms it would seem that things have progressed and you should be started on meds (hydroxychloroquine). It’s time to aggressively fight to be heard. I hope someone here in the UK can offer advice on how to do that with the NHS. . .
in reply to milkwoman
Hi I was referred to a rheumatologist I'm September. I wasnt suffering from extreme hot spells then or flu symptoms. It all started in may this year. With constant nausea everyday. It was a struggle going to work everyday as I felt so unwell. I know lupus has so many symptoms so.not sure if nausea is one of them. And I know test results can fluctuate overtime. My anti ds dna was 8 in may. Again i'm not sure if this has changed and increased.
milkwoman in reply to
So, did the rheumatologist do a full blood panel and examination? They should test for the presence of all sorts of auto-antibodies, including those for Sjogrens and auto-immune thyroiditis (aka, Hashimotos). Your anti-dsDNA test result is only two values under being positive for lupus. That along with your symptoms and positive ANA indicates auto immune issues that should be taken seriously. And yes, values can fluctuate based upon inflammation. Also, depends upon the lab. I consistently had negative anti-dsDNA test results from one particular lab and consistently positive results from a different lab. I even contacted the doctor and told them something was wrong with the lab they were using since I was getting VERY positive results from the other lab. Labs do make mistakes!
As far as nausea goes, could it be due to the filler ingredients in your meds for Reynauds? I’m super sensitive to fillers and got very nauseous when I was taking generic hydroxychloroquine. I’ve had issues with other medications as well (can only tolerate Tirosint aka liquid Levothyroxine). Sometimes the effects are felt right away. Other times it grew over weeks until the point I just couldn’t tolerate it anymore. Switching brands or going with namebrand solved the issue. When did the nausea start? How long have you been on the Reynauds meds? What are the meds? Are they namebrand or generic? You can look up the filler ingredients online (they are also listed on the insert that comes from the pharmacy with your medication).
in reply to milkwoman
Hi the rheumatologist ran a blood panel. The compliment levels were negative at the time but I forget what other ones he tested for. I am in the UK and the hospital only allow the ana test to be done every 12 months so will need to wait till may for it to be re tested. The nausea started around June time and was on no medication on then. The gp prescribed me cyclizine which really helps. As for the reynaud's meds i have only been taking them for 4 days. It's nifedipine. No side effects from them so far. I also suffered shortness of breath which lasted about a week. It's not happened again thankfully. I feel no one listens or takes notice of any symptoms I tell them. My thyroid peroxidase antibodies were over 1000 also.
milkwoman in reply to
Omg!!! So you definitely have Hashimotos!! You should be on thyroid medication and be managed by a doctor well versed in treating Hashi patients.
Also, ALWAYS get physical copies of all your blood tests and put them in a chart so you can track changes. I use Microsoft Excel for this and having this information helped me get diagnosed and treated because I could show the results over time to my docs
(when they typically only look at a snapshot).
I am not familiar with cyclizine - what is that for?
in reply to milkwoman
I saw a private endocrinologist due to the antibodies but he never mentioned that i have hashimoto's. I think because my tsh and t4 are in normal range. He just says it's a marker for developing autoimmune thyroid disease. He was the one who suggested lupus. It's used to treat nausea. I do now request copies of blood results. I have mild lymphopenia also. Not sure if that's relevant to anything?
milkwoman in reply to
Lymphopenia is caused by autoimmune disorders and indicates disease activity. I have low WBC count as well - it fluctuates but is generally low normal or below normal.
You need a new endocrinologist. I would post s question on the forum to see if any one can recommend a good one in your area.
I would also ask if anyone experiences nausea. You may be having food intolerances (such as gluten). Mant find going gluten free helps their hashis. Have you ever been tested for celiac or gluten intolerance?
in reply to milkwoman
I thought he was a good one. It's expensive going private. So not keen on paying a lot of money again and feel I am still getting nowhere. It's frustrating. Was your hashimoto's not diagnosed because of abnormal tsh or t4? I will post that question. I can't remember. I think I have been tested for celiac and that was normal.
milkwoman in reply to
I do not have hashis DX but my endo treats me as if I have hashis because I have autoimmune issues. Another thing, when I was tested for Hashi autoantibodies I was already on lupus meds and thyroid meds so it’s possible my results were negative because of the meds.
I didn’t test positive for celiac either and don’t think I have a problem with gluten. However, I did a private test for food intolerances and I have many (along with “leaky gut”) so I’m currently working on avoiding trigger foods and healing my gut.
Sigh ... yeah I understand. You might be able to find a good endo on the NHS. I believe you can email the admin here and get a list of docs.
The problem I have here is that no one will medicate unless it shows up on your tsh and t4 levels. And also the gp wouldn't refer me either so I would need to go private if I wanted to see an other endocrinologist. Due to the constant fluctuating temperatures I always assumed it must be thyroid related?
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