Hot flashes

Hi all,

Does anyone have hot flashes as a symptom of APS?

I am only 34. I'm wondering if this is yet another APS symptom or if I'm entering early menopause...trying to figure out which doctor to talk to about it!

I have had a few previous posts and to follow up, I'm on a waiting list to see an APS specialist that is 600 miles away. Hoping to see him after the new year. For now I'm seeing s local hemotologist and neurologist. I'm treated with xarelto and aspirin. I don't believe I am properly anticoagulated...I will be trying at my appointment in 10 days to get my hemotologist to switch me to warfarin.

Thanks for any insight on hot flashes!

22 Replies

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  • I can't say I have Hot Flashes but there was a short period of time that I though I was. Then i realized that I was running a fever. So fo tye past 6 or so years I have been running a fever about 3/4 daya a week. Its generally low grade which makes u hot then cold and of course as with any fever my muscles hurt. Ive had a lor of testing but no one could determine the reason for the fever except perhaps, my bodies thermostat has been damaged from the strokes. I wonder if other APS patients have had this problem. When it started I was not doing well an did not recognize the achy, cold to hot n sweating for a month or so. Of all of the things I have had to learn to live with the fever has been the hardest as I can deal witg the 24 hours of pain everyday. But the fever make my body exaggerate the pain. At the time the fever started I was 39 and my husband kept telling me it was menopause and I kept telling him that it wasn't it was something else. I hope u find a reason and feel better soon.

  • Thanks for your post! It honestly does feel like fever, but when I take my temp it's 97.0-97.5 (US). It's generally feeling extremely hot, sweating, feeling faint for a few minutes, followed by chills. This is happening over and over again throughout the day.

    I thought it was related to post-baby hormone changes, but by now my son is 16 months old and it is getting more frequent, not less.

    You mention stroke damage, which is interesting. I have had two (or maybe four, it's hard to tell what they are) episodes (most recent last week) that I believe are TIA since April 2016. My neurologist though, is not convinced and thinks they are seizures. I've had 4 MRIs and two CTs, none show stroke. I have 5 day EEG scheduled in 2 weeks to look further for seizures.

    I'm wondering if the flashes are related to seizure somehow or if Im just perimenopausal.

    Ugh.

  • I to went thru the heart and seizure testing. No seizures but I did have both a PFO &anASD, holes between both upper and lower chambers in the heart that the clots where jjumping thru an going straight to the brain insread of being filtered in the lungs. Hope it all goes well!

  • If you are having TIA's they do not tend to leave VISIBLE damage but can damage non the less. Straight out strokes and CVA's are more likely to leave visible damge in the brain! Im sure you know the difference but a TIA is a transit ischemic attack, and a CVA is a cerebral vascular attack and a stroke is well an outright slapp u in the face kinda events. I saw a neuroligist who was so sure that there was nothing wrong with me an was denying the possibility of a stroke even when his PA told him he needed to shut up an listen to me. Well he ordered tons of blood tests, strictly to prove us wrong. Well he proved himself wrong and even in the follow up he refused to discuss the findings. what I am trying to say is, just because there is no Visible damage does not mean there is no damage or that u haven't ir don't have TIA's. If he finds nothing. Just move on to another and another and another until u find one that believes and understands you! Good luck!

  • Also, I hope this resolves for you as well, this is miserable!

  • Yes I get fevers/ chills about 3/4 times a week buy I also do get frequent chest infections so it's hard to tell whether it's from that or not my doctor strongly seems to think my interior thermostat is broken also from a stroke. keep well

  • My dr thinks the same thing, broken thermastat. Down side is my body acts like ita a real fever and increases my pain level significantly. Hope u are doing better with it then I am.

  • Hi, I am glad you have an appointment soon, please do write down all your symptoms, and your medical history in bullet points, to help you on the day. Certainly these symptoms can be hormonal, but also flares can seem to cause temperature changes also. Do get the new consultant to check your levels of Vitamin D, B12 and Iron, plus your thyroid to make sure nothing else is missed. MaryF

  • I think it is very good that you are going to see a Specialist soon.

    We have found that the Neurologists do not "get" what APS is about - too thick blood that has to be thinned properly and kept at a stabel and rather high level of INR - if you take Warfarin.

    I have - as many others - microembolies and they are not seen on a Scan of today.

    I have passed menopaus with several years, but before I was anticoagulated (5 years ago) , I got CHILLS through my entire body. Could sometimes happen several times a day. I thought it was very curious. They lasted for perhaps 3 - 5 minutes like the many neurological TIAs I also had before Warfarin. I

    At the same time I got exstremely high bloodpressure for a short time (have a machine at home) and now I think they were tiny PEs as I today have Pulmonary Hypertension and two leaking heartvalves also. They are symptoms of APS. I have not heard anyone else have these "fenomens".

    All this is gone after anticoagulation.

    Best wishes from Kerstin in Stockholm

  • Very interesting Kerstin. I'm glad yours went away with anticoagulation! Crossing my fingers!

  • I get flushes that last for hours rather than minutes, have done for several years and I'm post menopausal. I turn very red and my face and hair drip with sweat for no good reason. I've never got to the bottom of it and have been extensively tested. My Inr is as high as it can go and I still get them. No matter how high my Inr has been I have never been symptom free. I also get very breathless and yet my heart and lungs are in very good condition so I refuse to stress about it.

  • I always get flushes when my thyroid is playing up and hot flushing is a sign of thyroid issues as well of course as hormone problems. It's easy to put everything down to APS but in my opinion I would get your thyroid tested and by that I mean a full thyroid panel containing your FT3, FT4 as well as RT3 and both thyroid antibodies. The TSH on its on is useless and tells you nothing. Everyone needs to convert T3 to T4 in order to get it into the cells and a great deal of people with autoimmune problems, especially Hughes seem to have issues with this. As the thyroid affects every organ in the body if it is not functioning correctly you will not function either! BUT you need optimum Iron levels and magnesium for this to work too!

    B12 as Mary says and VitD levels must also be at the upper end too. Get tested before you supplement for these things so you know where you are but buy good quality brands like Solgars for instance. And if low on B12 try to get injections from GP.

  • Hi, how are your periods? I would advise to ask your GP to check your hormones (blood test) if your period is absent or very irregular. Your GP may or may not refer you to a gynecologist depending on (other?) symptoms.

    In my case my periods returned a year after the birth of my child (I was still breastfeeding though), but they were very irregular and mostly very heavy. Then, after a year they almost stopped. I experience mild hot flushes since last summer and still get them about weekly. I read that early menopause is more common with people with auto-immune disorders. I'm 39 and the blood results so far point towards perimenopause. What the treatment (if any) will be, is still to be discussed (obviously they need to take into account I have APS).

  • Its interesting that you said ur temp is usually 97/97.5 as u know the AVERAGE bidy temp is 98.6. I to typically run about 97, when I have no fever. I wonder if other APS patients are also, what I like to call it, cold blooded. I am assuming you are also taking your temp when u have the chills as well as when u are hot. My temp doesn't need to be up much for hot/cold flashes to start. I hope u get thru this soon. Be sure to put it on ur list of questions

    For your specialist. It would be interesting to see what he says. My hemotoligist told me that as an APS patient with over thousand mini stroke also some CVA's that left visible damage n my brain. He said I will never be a candidate for another of the newer blood thinners like xarolto, however I don't know how severe your symptoms are. Good luck and travek safe!

  • I am, and always have been, cold blooded. My usual temp is around 96 F. When I come down with a bacterial infection -- like strep throat -- I often have a bit of a time trying to get the doc to understand that for me, 98F is a fever, and if it goes up to 99F -- thats a REAL fever (for me.)

    I had hot flashes when in perimenopause.

    I've been watching a series of videos (1 available per day -- today is day 2) on autoimmunity. My advice after watching the first 2? Cut out gluten for a few weeks and see if that makes a difference.

    The Functional Medicine docs from this video series (called "Betrayal" by Dr. Tom O'Bryan) make a convincing argument that all autoimmunity is caused by leaky gut syndrome: Once an offending protein gets out of the gut, an antibody from the immune system latches on to it, often carrying it somewhere else where that offending protein ends up latching on to some other body part -- which is then attacked.

    The most frequent offender is gluten. And, that gluten can seriously mess with the body's entire autoimmune/hormone reaction mechanisms.

    See if you can find the video. Today's episode 2, which is about the connection between gut health and autoimmunity) should be available streaming until this evening.

    Gina

  • Just found a link to that streaming video series: BetrayalSeries.com/watch

  • I live in a perpetual hotfalsh. I hate it! I dis have a radical hysterectomy and since Hrt is out the question due to Factor 5 Lieden thrombophelia I hustle chalked it up to loss od hormones. I suffer all day everyday with the blasted hot flashes and night sweats on top of it. I hope uou find reilef. And if you do, please share#

  • Ditto! And I'm 74. Going round the bend with it!!!!

  • I am so so sorry you all suffer from these too! They are awful.

  • In the twenty odd years I have been on warfarin for APS I can't say I have ever had associated hot flushes or fever type symptoms. Neither in all my ongoing consultant appts have these symptoms been alluded to.

    You could contact Dr Beverley Hunt at St Thomas' Hospital in London - she has done a huge amount of ongoing research on APS.

  • I'm sorry, no insight but your subject line caught my eye. I am 56 and just now experiencing what I thought were menopausal symptoms. I guess i'm only replying because now it seems so difficult to figure out what symptoms are related to the disease or the medications for the disease or is it something totally unrelated. Seems like everything just gets lumped into the disease...it's beginning to look like my junk drawer... we all have them don't we? Could luck on your quest for answers.

  • It is so hard to determine what is related and what is not. I have the issue, since I don't have a particular APS specialist as of now, that my doctors seem to attribute everything to something else. Basically the attitude is that I'm taking a blood thinner so it can't be the APS. Here's to hoping for better treatment soon!

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