hypothalamus

Hi just wanting some advice has anyone with SLE suffered with hypothalamus. Lately I'm getting hot and cold flushes when I'm mobile and making me fatigued it's also effecting my eyes but it's fine when I'm sitting down. Thks in advanced.

[Oshgosh]

I’m getting more hot and cold flushes recently.theyre usually when I’m sitting down.

It’s driving me daft,butIve not mentioed it to any.medics.if I do they will send me for more tests,have hadenoughtests for now

I’m putting it down to the lupus and crashing on as usual. Back continues to hurt

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

It is quite common for people with lupus to experience difficulty in regulating body temperature and have hot flushes. This tends to be even more pronounced in some people on steroid medication.

Have you discussed it with your doctor? In some cases they may wish to do some thyroid tests as about 10% of people with SLE will have an abnormal functioning thyroid gland due to autoimmune thyroid disease. This can directly affect body temperature regulation.

[Hidden in reply to Paul_Howard]

Thks Paul I haven't discuss it with GP yet I will make appt. Thks again.

[Loopyloo43 in reply to Paul_Howard]

Hi Paul for about 3 years I have been suffering with terrible sweating and flushes but have had no response to the symptoms from the medical world I think most of the time they just hope I get bored asking! But this is soul destroying in a daily basis I can’t do anything and even if anight have the windows open to keep me cold.even my endocrinologist at one point did a 24 hr screen to see if it was something to do with that but it wasn’t . Am glad to read your post . Because this is exactly what I feel thatmy body doesn’t have control of heat or cold and worse when am active. But it seems that these drs just don’t want to help me. And feel my health is deteriorating before me. And don’t know who now to approach ,

[Paul_Howard Partner LUPUS UK in reply to Loopyloo43]

Hi Loopyloo43 ,

I can appreciate that this can be a horrible symptom to cope with. I think that part of the problem is that it may only significantly improve if your lupus in general is more effectively under control and therefore the consultants may not have any additional therapeutic options to offer you. Was your thyroid function thoroughly checked by the endocrinologist?

[CecilyParsley]

I always say I have no temperature dial. I am either dripping sweat to the point that my hair gets wet and it runs down my face and drips onto the table. Within minutes I am really cold If my husband puts the air conditioning on in the car I am huddled under a fleece as the pain in my fingers is unpleasant. I have been diagnosed with an Underactive thyroid and Raynauds. My Levothyroxine seems to increase every year . I am now on 120 mg a day. My GP and Rheumatologist say the sweats are my age, I am 57. I really hope that you can get bloods taken to check your thyroid, it is horrible to have such uncomfortable symptoms xx

[HedgeEnd]

I'm always really hot or cold. I've put the flushes down to the menopause, but that still doesn't explain why I just feel hot a lot of the time when everyone else is fine or even cold. I also don't cope with hot or cold weather. Been like this for ages and I always say my thermostat doesn't work properly!

[lupette]

I have had flushing for years but I don't know what causes it. Sometimes it gets so bad that I feel sick from it. I go from hot to cold, and back to hot, in a matter of minutes. I get chills when cold, and sweats when hot. I have been trying to find a relationship between the flushing and the foods that I eat but so far, nothing seems to consistently make any sense. Is this the hypothalamus? The doctors never seem to have any answers. Mostly they think that it's from being female. It's not. (Sometimes I hate going to the doctor.) I have also wondered if it's related to the Raynaud's thing. I had that every winter until I moved to the desert but now I get it only rarely. Sorry for rambling on. Just thought some of this might sound familiar to someone else.

[lupette]

Oh and I also have Hashimoto's, so low thyroid hormones, and I supplement with Synthroid. Maybe it is all related. Who knows?