Hughes syndrome and the menopause

I was diagnosed with Hughes syndrome 15 years ago I seem to get the symptoms under control then something crops up to upset the balance. This time it seems to be the menopause and trying to find a HRT that I don't react to in some way seems to be a problem. I have suggested that may be a hysterectomy may be the answer but the GP will not even consider it.

Has anyone else had similar problems?

8 Replies

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  • Would also like to hear others situations, I'm in a similar place to you Jolevans.

  • Hi, yes hormones seem to drive my conditions mad. If you are seeing somebody other than your GP it may be a good idea to ask them in detail for more help, are you on Warfarin? As i know this has implications for taking supplements etc. Also have you had your Thyroid tested as this can mimic hormone problems or be also causing havoc to how you feel. MaryF

  • Hi, I regularly see professor Hughes. He suggested HRT and persuaded my GP to prescribe it as they were reluctant. I am on warfarin and have regular thyroid tests. The HRT I am taking at present has helped a lot of symptoms but I sleep a lot having to go back to bed several times a day.

  • I am sure he will help you and fine tune things, and also ask you about your Thyroid. Let us know how it goes. MaryF

  • I am on a HRT patch called Estradot it comes in 25,50, 75 and 100mcg doses. Since my Hysterectomy i have always used a patch rather than take oral meds which for some reason did not work so well with me. Also by using a patch it does not have to be metabolised by your liver. Most of the studies that were done on HRT were done with oral HRT and Im given to understand that the risks are lower with a patch.

    In any case if you are adequately medicated then you should be safe and Prof Hughes has confirmed as did my gyny that it was fine for me to take it. At the end of the day its a personal thing but quality of life has to be balanced like everything else. I look at it like this, I'm being medicated to stop clots but I have a higher risk factor for bone loss and breakages therefore the HRT helps in that regard. So I like everyone have to make a balanced decision along with my Doctors which is what we all should do in the end.

    I hope you feel better soon.

  • I, as other female members of my Irish grant-grandfather's family, had horrid, HORRID! periods and "female" issues. For all those years, the only time I felt well and, what I now realize is "normal," was when I was pregnant.

    Later, when menopause began, my alternative health doctor prescribed a locally compounded, progesterone/testosterone cream. And that stuff was wonderful! Wonderful! But the doctor did not keep me on it. Based on a saliva hormone test results he switched me to an oral HRT which had DHEA and estridiol as well as the progesterone. And I spent years trying to convince the doctor that this new formulation made me feel worse -- not better. More fatigue and more inflammation (My C reactive protein and sed rate went up. A lot.) Finally I just tapered off the pill and stopped going to that doctor.

    And now that I'm well into menopause and off the HRT I am back to feeling normal -- which is great. Normal is wonderful!

    We're all different and parsing out the hormone/autoimmune connections must be incrediably complex.

    Good luck!

  • My GP does not believe in HRT unless symptoms are "unbearable".....for mood fluctuations she

    chooses to prescribe anti-depressants....I was prescribed an SSRI(Pristiq) and Wellbutrin....I managed

    my hot flashes by wearing layers...and making sure I had iced coffee/tea with me at all times.

    webmd.com/menopause/antidep...

    My choice was made because I did not trust potential dangerous consequences of taking HRT

  • I am not a doctor, and can't give advice. That said, I will just give you some of my personal background.

    My family history of heart disease (vegetation on the heart valves), early death, heart transplants, excessively high cholesterol, dementia, sudden death by stroke, had absolutely no explanation when I was young. All four of my children were born between 30 and 32 weeks. Most of my female cousins could not get or stay pregnant and no one knew why. My periods, were fairly uneventful, especially compared to all of my female first cousins (18 of them! Huge family!)

    After my fourth child, in 1986, at age 26, I had a huge DVT. It extended from my knee to the middle of my abdomen. For the first time in my life, I had used birth control pills after child number three. I got pregnant while taking the oral contraceptives and that clot just grew and grew the whole time I was pregnant, without any symptoms. I actually felt great the whole time I was pregnant.

    I was anticoagulated for three years, wore compression panty hose day and night for four years, took tap dance lessons to assist my body in developing new vascular pathways. For the next six years life was busy and healthy and I am ashamed to say I took good health for granted.

    At 36, I started having hot flashes & mood swings. At 38 was medicated for anxiety. Hormone levels showed the beginning of Peri-menopause. At 40 I started to get terrible cramping with my periods that gradually extended from the three day cycles of my past, to a full seven days of misery. This is about the time I started to get "forgetful".

    At 45, periods were 10 days long with lots of clotting, cramps, hot flashes, night sweats, head sweats, irritability. My family doctor said NO WAY to any kind of hormone intervention. He didn't even want me to try herbals. Migraine headaches were now 3-5 days per week and extremely debilitating. It sure seemed as if everyone thought I was crazy.

    At 48, I couldn't take it any more! I was missing a period every third month or so and hormone levels were slightly decreased. Thyroid etc... all normal. SO, I got another doctor. She said I had Pre Menstrual Dysphoric Disorder and gave me HRT. It was Estrogen based. I took the medication for 7 days...

    I could not breathe. Sudden onset shortness of breath had a truly new meaning. Went to the Emergency Department. CT exam confirmed PE. I had 7 clots in my right lung and the left lung was almost half full of small clots. This caused Pulmonary Hypertension and permanent heart damage. Hematology Department diagnosed Antiphospholipid Syndrome (No one in the states calls it Hughes Syndrome) All three tests were positive.

    Pulmonologist, Hematologist, Cardiologist all stated at the time that the clots were caused by the HRT.

    I was put on life long Coumadin therapy with an aspirin chaser. Periods looked like a horror show for the next two years, but no more clots, and much less cramping. My mood got better, anxiety all but went away, night sweats stopped almost immediately and migraines reduced to about once per month. During age 51, I gradually stopped having periods. Still get hot flashes and regular migraines.

    Now I know we are all very different, and I did not win the lottery genetically when all three blood tests for Hughes are positive, but hormones, specifically Estrogen, is definitely my trigger.

    Whatever you decide, please stay alert to your body. If you do decide to use HRT, please research the drug and compare it to others available. In my research (Of course I did this AFTER I trustingly took the first drug my doctor offered, Oh hindsight...) I did find that first and second generation oral contraceptives have a much lower incidence of causing clotting compared to the newer "third generation" hormones. And if straight progesterone can improve your symptoms the incidence is the lowest.

    Sorry for the long post, third night in a row that I can't sleep. Oh, that is my latest symptom that no one can really explain!

    My best to you!

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