At the moment it is only just 9.00 and the temperature here is 24 degrees C. Is anyone out there enjoying the heat? I know my body hates cold damp weather but it turns out it also hates this constant heat we’ve been having. It was 30 yesterday and although it’s quite cool downstairs and I can keep very cool - it seem I can’t fool my body.
So hands up - who feels better in this heat?
I find my joints improve with the heat. However I have severe adrenal insufficiency, and don’t produce any cortisol, the stress hormone needed by the body. It is the only other hormone apart from insulin we can’t live without. The stress created by the heat makes me nauseous, lightheaded and headache. I have to drink electrolyte drinks to rehydrate and take extra steroids which I’m reluctant to take. I do enjoy sitting outdoors but always under a brolly, and I have a rechargeable fan that is beside me 24/7. It also causes severe face and head sweats, which I find embarrassing, all due to heat intolerance. I go out even in March walking with just a T-shirt on, get strange looks. I can be pottering round the supermarket when it hits, and have to make a bee line for the door. Initially they thought it was the menopause, but I’m 10yrs on from that and HRT didn’t help, it was only once diagnosed AI they found the cause 🤗
I was really interested in reading your post. I too, can’t tolerate heat, and have adrenal insufficiency. I have had extreme head sweats for the last 10 years. My gp said it was the menopause too, but I sailed through it without any of the usual symptoms - my periods just slowed down then stopped. Even the head sweats hadn’t happened then. I was a primary school teacher when I retired, and children were very concerned when, all of a sudden, my head would start leaking water!
Same here, when I initially started getting the head sweats I wasn’t diagnosed with AI but had the symptoms and GP was convinced the lightheadedness, nausea and vertigo were all due to an ENT issue. He initially blamed the menopause for my head sweats and prescribed HRT. However like you, I had no issues through menopause and had no symptoms, nor the classic night sweats. It was always in the day and usually with the slightest activity. I could be wandering round the supermarket, or if out walking, after about 1/2 a mile of walking it would suddenly start. I wear a Fitbit and noticed my heart rate would suddenly shoot up and coincided with the sweats. I would also get it in the gym just doing the warm up. I started taking small doses of hydrocortisone when it happened and found it settled things down. When I mentioned to my endocrinologist, she advised me to check my blood sugars and if on the low side, we could assume it was cortisol and updose. Now I know what will trigger it, I take 2.5mg HC before I do my weekly shop or go for a walk. I’m also finding with this hot weather I’m having to take small updoses, as well as electrolyte drinks. Some people struggle to understand, because their adrenals are pumping cortisol out with all these scenarios, whereas we have to do the thinking of our adrenals and adjust accordingly. It would be good if we could monitor our cortisol like diabetics monitor their sugar levels. Sadly that’s a long way off, and we have to wait till we get symptoms, to know that we need more steroids. I’ve had an argument with hubby trigger symptoms of a crisis, with the nausea, headaches, lightheadedness, low BP and slurring my speech, and had to dissolve 20mg under my tongue. It is a truly horrible illness and stressful for our families. I was waiting to see an endo, had an appointment for 3 weeks away, when I had a severe stroke due to an adrenal crisis, I was diagnosed 3 weeks later at the appointment, after my short synacthen test showed undetectable levels. He was astounded I’d struggled so long as 90% of my adrenal cortex is destroyed. Take care. 🤗
This is so timely. I emailed my endocrine nurses to ask whether my inability to regulate my body temperature was anything to do with my AI (not due to oral steroids, possibly high dose inhaled ones that I use for my chest, they aren't really sure) - I have totally undetectable cortisol and ACTH.Nurses have come back with menopause . . . err nope, I know it's not that. Been there, done that without these issues.
I get lightheaded, nauseous, headache. My temperature shoots up too. It's been between 37.9 and 38.2 yesterday and today although by this time of night it settles. Get to 38.3 and I will start vomiting even though I am essentially fit - no infection etc. All very odd and frustrating. One vomit . . . ok, after the second I'm off to A&E and spend three days in hospital.
It truly is a dreadful condition to live with. So many medics pretend to understand it, having never seen it. My GP is in his 60s and I’m his first case. I gave more respect for those who admit they don’t know about it, and accept the leaflets about it from the charity. My local endo dismissed the head sweats weren’t connected. He discharged me to manage alone, despite undetectable cortisol and having had a severe stroke from a crisis. My gp wasn’t happy taking responsibility, so referred me to Barts, where I’ve been for 3yrs. They accept it could be related to my cortisol and were the ones to suggest checking blood sugar as that also falls when cortisol is low. When I asked my local endo how many AI patients he had he said 3 including me, the other 2 were on hydrocortisone. He insisted prednisolone was only needed daily, despite me being nauseous from 4pm and bp plummeting to 85/45. Barts agreed it needs to be at least twice daily, and gave me my life back 🤗
It is horrid, I agree. It's bad enough when folks don't comprehend RA, but medics lacking understanding of AI is, quite frankly, scary. I went to A&E in crisis August 2020. I heard the consultant say to the junior doctor dealing with me that, as long as I didn't have sepsis, he wasn't bothered. It was my 'usual' hospital so my patient records are on the system. I showed my blue card (as it still was then, praise be for the new no-quibble one) and was sent home a few hours later. Not even one shot of hydrocortisone. My endo raised the roof from what I gather. It doesn't help that I'm as ever, non-textbook and have high bp. You try explaining to paramedics/A&E staff that if my bp is roughly normal then I really am in trouble!! I'm very white coat with bp cuffs and, if I have been vomiting (which I will have been if I'm in A&E), I also won't have had any bp meds. . . therefore a 'normal' bp should be impossible for me. . . 200+/100+ with pulse of over 120 would be very likely. Under 140/90 means I'm in serious trouble! It does click, finally!!
Interesting that your endo has commented on blood sugars. It's one of the things I mentioned to my chap last time we spoke, along with dizziness/vertigo, headaches. nausea, fatigue and energy levels generally. I'm 'experimenting' with dose at present - no less that 15mg (fat chance, I would keel over) and no more that 30mg on a normal day. I've been on 20mg for years but not coping as you can tell from the list. I'm also trying timings too - at the moment it's 15mg om waking, 5mg at noon and 5mg at 4pm. Afternoon nausea has gone with the midday dose and the headaches are better. I did do 15mg + 10mg (at 2pm - his preference, as opposed to 4pm as originally instructed by the nurse) and the increased dose has helped with the dizziness.
It's such a fine balance.
What does make me laugh is that I always get a panicky phone call after 9am cortisol bloods to check I have restarted my hydrocortisone having had to pause for the blood test. Err, yep. Considering I have all but crawled in to the room, I'm mainlining the stuff as soon as I get back into the waiting room. One of the endo nurses saw me for a quick chat after my bloods one day and double-checked that I hadn't driven myself. She pointed out that I wouldn't be safe . . . !! I don't drive before 9:30am, fully dosed up if I can help it. I wouldn't dare drive without any in my system.
Sorry for the ramble
🤭
I totally get it. Despite having been told when I had my stroke it was likely due to a crisis, a junior Dr tried to tell my husband I was safe not having prednisolone for a couple of days, as I was nil by mouth till I could have a swallow test 🙇♀️. When I’ve had my SST tests I’ve literally looked drunk, staggering, slurring words, nausea etc, all from being 3hrs late taking my HC. It is frightening how ill informed some medics are, but pretend to be knowledgeable. I have more respect for the ones who admit they don’t know. My GP is quite new and gets very nervous prescribing anything. She always makes me email my endo in London for approval or advice re meds she’d like to use. It can be frustrating as it delays treatment, but I respect that she’s got no experience of AI.
You may find this picture useful re your blood pressure issues, as you say they assume it will also be low. The other issue is you can’t be in crisis your sodium and potassium are normal, well yes that’s because I’m secondary and still produce aldosterone, whereas primary AI don’t.
Thank you for that, it's really useful.My sodium goes from 140 to 113 in less than 24 hours. I tend to only truly vomit once. After that it's retching (whilst wafting in and out of consciousness, sat on the loo lid, propping myself on the radiator and basin!) more than anything, but my sodium still plummets. Potassium drops too. One of the ways I know I'm heading for trouble is when I suddenly fancy a bag of really salty crisps. Endo wants me to keep my salt levels up . . . you try that with a GP nagging about keeping bp levels down!
Enough, thank you for taking the time to respond and to share some of your experiences.
Do you take fludrocortisone?, I don’t but do get low blood pressure with the head sweats, so plan on speaking to my endo next month. My concern is they say my adrenal cortex is 90% destroyed. Aldosterone is also produced in the cortex, so I can’t see how I would produce sufficient aldosterone. It’s never been tested, it my Na & K are usually in range. Here’s a good leaflet re salt with AI, they do say you should more the normal asvice like that from your GP to restrict salt. The advice is for 6g of salt a day, but AI patients need more than this. I also find if my salt is low I can’t taste the salt I add to drinks, when I can taste it I know it’s corrected.
addisonsdisease.org.uk/blog...
No, I don't take fludrocortisone. I suppose with high bp the endo has to balance things but does tell me to add more salt to our food! We had got into the habit of not putting salt in with pasta/vegs etc when the lads were little (now 23 and 20) and hadn't really started up again (they were 19 and 15 when I was diagnosed in Dec 2016). We do now try to include salt but I still get cravings at times, usually during/after a stressful situation. I'm not sure how clued up my endo really is but he listens, looks things up, happily enters into discussion and has at least kept me on his books. My GPs are, thankfully, in the main, very good at owning up to what they don't know (Humira for a start) and look for answers. It's not a perfect set up with either but hey, I feel I can pick brains when necessary. Whether they know the answer is always a gamble.Thank you for the link.
Definitely not me ! My joints swell- especially my fingers.I can cope if I'm sitting in the shade and there's a breeze.
I love heat. At the moment though (yesterday and today) I have stayed inside with the curtains drawn. That is because of health stuff. I am away tomorrow, and can’t wait to get my bikini out and scare people on the beach. Lying down and doing nothing except read and drinking water will be fine 🌞. My garden is a bit overgrown atm. I don’t want to garden in this as it may cause issues. My neighbour won’t be impressed……especially as I’ll be away for 10 days…
Have a wonderful time at the beach I’m sure you won’t scare people 🤣
Thanks 😝
I hadn't seen your post when I wrote mine a short while ago . Unfortunately, the heat makes everything hurt . Even parts of my body , like my feet and "good" knee which gave up annoying me years ago , remember what they should be doing , and join the party 🥳. Before tanning became a "no no" , I was out in the sun at all times . RA put an end to that . I commiserate with all who suffer .😥
No, the heat isn't good for me. My joints are more swollen in the warm weather.
I like it cool, cold even.
Not a chance curtains closed . I might as well be a mushroom 🍄 or forced rhubarb
Rhubarb is ace though 😋.
Oooo I’m with you there 👅
Meeeee. It makes me much happier. My joints hate humidity, but so far the humidity isn’t too high. Grey days and dark depress me completely
☀️👏🏻😊 that’s good, glad someone is loving it.
The heat is not good for my joints, my fingers are so swollen and stiff and my ankles have swelled like never before. I can feel niggles down the back of my leg similar to mild sciatica so I'm praying that sciatica doesn't develop. I am always better in cool or cold weather.
My bones are hurting more and my fingers are swollen and sore! I watch A place in the sun on tv and lots of people say they are moving abroad to help their arthritis. I think it’s totally different heat abroad as I do feel better than I do here pain wise.
I have got cooling fans going galore in my bungalow, not just for me , my poodles too. My joints don’t like the heat , my feet are more sore. I hate sweating and continuously changing my clothes. Worse thing is not being able to breathe properly. I get head pressure too with tinnitus and if I get stressed it affects my arthritis , there is no answer other than immerse ina cold bath or shower, however the sunshine is very uplifting for our brains. !!!!! 😃
Heat !!! 
Metoject and heat
Methotrexate and heat
Heat
