I am 57 and have just stopped taking HRT after 7 years a...

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I am 57 and have just stopped taking HRT after 7 years and am plagued with hot flushes and pins and needles in the fingers. I can find plenty of guidance on the menopause and why to/ not to use HRT, but nothing offering information on what happens when you stop HRT! Help!

[i:3f4831d826]This message was automatically imported from the original Patient Experience[/i:3f4831d826]

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  • Posted

    Morning one and all. I have been reading what you are all going through and yes it is complete hell. I am 58 now, I have only been taking HRT patches since  the 15th of July 2017 I am a newbie at these patches, I am on EVOREL CONTI.  3.2mg Estradiol hemihydrate. 11.2mg of Norethisterone written on the Saches we all know it as Estrogen and Progesterone. I have like many of you guys suffered for many years 10 years now with hot swears during the day and night, my night time ones were the worst over 30 a night, my fan was on and off my sheet the same. My Gp refused to put me on HRT patches because I was getting Migraines a couple of times a year and when I asked my lovely Gp who has known me for 17 years why I could not go on them I informed it may cause a stroke, so knowing that reason I stayed off of HRT as I  did not want a stroke. I am on a lot of medication and I will not name them all which has taken away my appetite and I only have 2 hours broken sleep every night. At one of my visit to see my GP I was told that I could go on HRT well, I could have jumped for joy but being disabled I could not. Gp checked my blood pressure it was too high so I could not go on them, so I was p****d about that.  Had to wait a while for my Blood pressure to go down now I am on Amlodipine 5mg tables of my BP. My BP was now ok so then was put on my Patches on 15th July 2017, well it made my day month year. Yesterday I started to bleed a little but I have read this is quite normal for a while  I have read but I will mention this to my GP on my next visit. I really feel for all of you being in that horrid place is just the pits. I am quite surprised that so many of you are still on it at 77. My question to you all is to the ones that have been on the patches for a few years what was the gap you had between having the patches on and then not. What age did all your symptoms stop after you stopped taking the patches all together?. I trained as a Holistic Therapist many years ago so I know how the systems work in the body, which makes me understand what is going on inside it. I know that one should not be on it for long but I have read that some of you have been. My heart goes out to you all. 
  • Posted

    Good evening, Daywalker and everyone,

    I am also using Everol Conti patches, but I found out that using one and a half or even two patches a week caused some bleeding, which apparently is nothing to worry about.  I simply cut down to one a week and no more bleeding occurred.

    I was also diagnosed with a blood prerssure reading of a little over 140/90 which is about acceptable for the "older woman."  I was put on perindoperal 10mg plus amlodipine 5mg, which I will have to take forever.  Once you start on B/P tabs, you can't stop because the high B/P comes back.  However, I have recently stopped the amlodipine as my B/P has stablised at a lower reading.

    I have taken Premarin tabs, then Prempak-C tabs. for about 35 years,  then changed to the patches becaused I got fed up with the monthly bleed which the tablets caused to protect against womb lining thickening.

    I am not sure if it is possible to come off the HRT completely after taking it for so many years, as I am now 80.  I really continued for bone protection, healthy hair and skin, and NO hot flushes.

    I would have to say there is no "one size fits all" recipe for weaning oneself off HRT altogether.

    It is trial and error to see what works best for you.  Some ladies manage it without harsh withdrawal symptoms, whilst others struggle endlessly before going back on the pills, which can then take up to five weeks before you enjoy the benefits of it.

    My efforts at withdrawal was to use half a patch a week for about three weeks, then a quarter of a patch for another three weeks, then no patch.  I was okay for about three to four weeks, and thought I had cracked it.  Then, lo and behold, back came the hot flushes, sweats and lack of energy, etc.  It was all during our lovely heatwaves too, which did not help.

    Anyway, I wish you all the best, Daywalker,  and everyone who has a similar experience to relate.

    Eveline 

    • Posted

      Thank you eveline for your response.  I have gone back on HRT as of a month ago. Only am taking it every other day instead of everyday. Tonight I started month two which includes the progesterone. The real test will be at the end of the month to see if I get the cramping pain I got last summer and continued until April when I came of HRT altogether.  After a month now using it every other day, I do feel better. I have very few hot flashes now. Some at night are reduced in intensity over what they were. I hope I get thru this month without the cramping pain, otherwise not sure what I'll do. As I mentioned I started HRT when I was just going into Menopause at about age 40 something. I am now 69.  I went on it because I had read in Opera News that some singers will benefit from starting HRT early. Besides my age now and the fact I have some bowing of my vocal cords, I was singing okay but I think I felt more difficulties when I stopped the HRT i few weeks after. Although I don't feel like my singing is where I would like, I do think I feel better about it now that the HRT has kicked in again. You may be right about never being able to come off HRT. I was told after my D&C that all the  endometrium was  removed, I don't think that was the case and so the progesterone causes this pain. Maybe there is another medication that will work, but I've come to believe that most doctors really don't have the experience and information available to make an informed decision. And so it is trial and error on my part!

       

    • Posted

      PS: Eveline, I forgot to ask you, since I assume you did not have a hysterectomy, did  or does your HR therapy include progesterone which is essential far as I know if there is a womb. 
    • Posted

      Hello Itasara

      You are quite right in that I never had a hysterectomy, and my first HRT tablets were a dual pack of Premarin. So it was 21 days of estrogen, then 7 days of both estrogen plus progesterone.

      And yes indeed, the progesterone gave me mild stomach cramps, which I mentioned to my GP. He just laughed and said the progesterone was necessary to protect the womb.  But he did change the tablets to Prempal-C - 0.625 and I had a light monthly bleed for years, but still got the cramps.

      At your age, it might be worth trying the evorel conti patches, so you get a small dose of each hormone in each one.  I use one a week, or half a patch twice a week because a whole patch is twice the strength of the 0.625 I was taking.  I do not need to get monthly bleeds with these and I do not get any cramps. 

      I would mention I had a D&C at age 32 because of numerous cervical polyps, then my periods went crazy at age 34, and I started HRT at age 40.

      I read a fabulous paperback entitled No Change by Wendy Cooper when all my symptom started and it is still available on e-Bay for £1, or Amazon at about £2.  I do recommend that all the ladies following this thread read this book.  I was amazed it is still available.

      In the meantime, Itasara, I hope you will get some relief very shortly.

      Eveline 

    • Posted

       Thanks so very much for your reply. I appreciate it. I may talk to my gynecologist about the patches which is something I had not considered. I’ll see what happens at the end of the current month as to whether I still get the pain on my current every other day schedule. The D&C I had was to remove polyps as well. But after the D&C I had no more bleeding —end periods! I think I was about 66 when I had the D&C.  Your doctor was right about combining estrogen with progesterone. Back in the day-about 38 years ago- when Premarin first went on the market my mother took Premarin but they did not know at that time the necessity for progesterone. She died of uterine cancer. This could have been avoided had they known at the time!  I’ll see if I can find the book in the US Amazon market place. 

       The drug I currently use is called Premphase which is 14 days of estrogen .625 and 14 days with progesterone added to it.  I had my yearly physical today and I had a brief talk with my GP about my situation and because he’s an old school  physician,  which I deeply admire  and respect (because the  younger ones are in a much different place which I am not  so much  on board with these days,)  he understood my predicament and agrees that everyone is different and there’s not enough information and research to do anything but trial and error in these situations. 

    • Posted

      Eveline, I ordered the book from ebay. Not many left on Amazon oy Ebay. Thanks for suggestion. 
    • Posted

      Hello Itasara and Everyone

      The book "No Change" emphasises the advantages of HRT rather than advising on the various products. I found it quite informative and I hope you will too.  I hesitated over changing from tablets to patches for quite a while. With tablets you can be sure you are getting the dosage, but I thought with patches, how can you tell if the hormones are being absorbed.

      So when I applied my new half patch, I left the older one in place, thus doubling the dose.

      After about three weeks I had "withdrawal" bleeding, which I researched and found it was due to too much pregesterone and was nothing to worry about, but it did prove that the hormones were indeed being absorbed.  I reverted back to half a patch twice a week and no more bleeding since.

      I found out a good way to apply the patch or half-patch was to buy a 5 metre roll of microporous sugical tape 50mm wide off E-bay, cut off a piece and place the patch on it. Then peel off the transparent protective halves, and without needing to touch the adhesive, simply place the whole thing to the top of the thigh.  Hold your warm palm over it for one minuite to melt the adhesive, and it should never fall off.

      Do write again Itasara when you see how you are later in the month.

      Eveline

    • Posted

       Hi again Eveline,  I just finished most of the book yesterday. I scanned over some of it at the end because right now I’m not interested in implants of the drug. The book was very good and I’m glad I got it. Thanks for mentioning it! Since he 70s,  the basic concepts are still the same. I think there is some newer technology since then, but I still feel there is a lot more research to be done and I don’t think that  in the US the  physicians are promoting  HRT enough. At least we have the freedom to go to any MD we want. The only obstacle is the insurance companies which lately try to control what we can have by what it will help cover monetarily or not.

             The book 📖 did not touch on one problem that I have which is what to do after a D&C and the ablation of the endometrium. This situation needs more research to be sure.I did find a site on the web which mentions that age should not be a factor in prescribing HRT but not anything about my problem.

            I did find a site where some women complained of craning after menopause with or without HRT.

              I’m still waiting to see what will happen in a few more days but even on an every other day schedule I’m feeling better and I really do not want to come off HRT - - probably never. I just hope when my GYN retires I’ll find someone else who will be as agreeable as my current GYN. Time will tell!!

    • Posted

      (Crash, bang, thump!)

      Hi Ladies,

      I just drop in - again.

      I tried to scan some of these to catch up.

      I am using a phone, not my big computer, so it is hard on my eyes.

      OK, I want the number in London! Do they ship to the U.S.??

      In case you all don't remember - I have Neuro-Behcets.

      My research shows estrogen and progesterone, crosses the blood-brain barrier!

      Estrogen reduces inflammation!!! The progesterone affects the Morphine receptors in the brain. For me, both are important!

      These studies are by respected researchers.

      I was on prempro, had a blood clot in my lung. Gp freaked out- NO MORE HORMONES FOR YOU!!!! I had a horrible result.

      This disease is like Multiple Sclerosis, but worse, IT IS VASCULAR INFLAMMATION.

      SO, AFTER A COUPLE OF MISERABLE YEARS AND 4 broken pelvic bones FROM A GROUND LEVEL FALL, (I TAKE PREDNISONE) AND I HAVE PERMANENT BLURRED, DOUBLE VISION. (PLEASE EXCUSE THE CAPS, THAT IS WHY I USE THEM).

      I GO TO MY NEURO.

      All my symptoms are worse and my pain is unbearable. I am on blood thinners, study shows I am at LESS RISK FOR STROKE, HEART ATTACK, ETC. THAN WOMEN NOT ON THEM.

      I TELL THE NEURO, I GOT OSTEOPOROSIS, AND MY SYMPTOMS ARE MUCH WORSE AND MY LIFE WENT DOWN THE TOILET WHEN GP STOPPED THE HORMONES.

      NEURO SAYS, "SHOW ME THE STUDIES". I DO, HE AGREES " BENEFITS OUT WEIGH THE RISKS".

      So okay, back on prempro, nope.

      Insurance doesn't want to pay.

      They want me to take 2 separate pills, ( the progesterone has to be cut in half) OKAY. I WAS DOING BETTER, SLEEPING AT NIGHT AND DRY- NO HORRID NIGHT SWEATS. MS like symptoms much better, pain better.

      TIME FOR REFLLS- NOW INSURANCE WILL PAY ONLY FOR PROGESTERONE, WON'T PAY FOR ESTROGEN! ARE THEY INSANE!!?? IT TAKES BOTH MEDS TO= ONE DAMNED PREMPRO!!!!

      SO, WE ARE FIGHTING IT.,

      MEANWHILE, MY SYMPTOMS ARE SO BAD - I AM GETTING INFUSIONS OF REMICADE. THIS IS A PROGRESSIVE, FATAL DISEASE, THAT IGNORANT DOCTORS AND INSURANCE ARE MAKING WORSE!

      IT HAS TAKEN ME ABOUT 2+ HOURS TO PECK THIS OUT. WITH THE TWITCHES AND JERKS. PLUS VISION PROBLEMS.

      MONDAY, I AM TELLING INSURANCE I AM CALLING THE INSURANCE COMMISSIONER AND REPORTING THEM FOR "ELDER ABUSE"!!

      SO, PLEASE KNOW, HORMONES AFFECT THE BRAIN, CENTRAL NERVOUS SYSTEM AND THINGS YET TO BE DISCOVERED.

      ALSO, SOME antidepressants DO NOT WORK, WITHOUT ESTROGEN. MY MEMORY IS ALSO BAD. I BELIEVE PROZAC WAS ONE THAT HAS TO HAVE ESTROGEN TO WORK.

      LADIES, ALL OF YOU SOUND VERY INTELLIGENT, DO THE RESEARCH!

      I AM IN THE USA, DOCTORS HERE TREAT THE PROTOCOL - NOT THE PATIENT. DON'T LET IT HAPPEN WHERE EVER YOU ARE.

      ALSO, A SIDE NOTE. HERE PEOPLE ARE USING À " SUPPLEMENT " CALLED KRATOM. SORT OF LIKE MARIJUANA. THERE ARE MORE AND MORE PEOPLE WITH hepatitis! IN SOME USERS, LIVER TOXICITY. SO IF IT IS WHERE YOU ARE, BEWARE! LOOK AT WEBSITES HERE ".GOV" AND SHOW YOUR KIDS AND GRAND KIDS IT IS DANGEROUS!

      IT IS SITES LIKE THIS, WHERE WE LEARN FROM EACH OTHER. NOT JUST ABOUT HORMONES, BUT HOW SEVERELY WE ARE AFFECTED. SCIENTIFIC STUDIES SAY THEY SHOULD NEVER BE STOPPED COLD TURKEY!

      I NEED TO STOP, MY EYES HURT AND I NEED MY MUSCLE RELAXERS.

      THANKS FOR LISTENING AND .PUTTING UP WITH THE CAPS.

      BEST OF LUCK AND GOOD HEALTH TO ALL OF YOU,

      CINDY

    • Posted

      Fixing above text... should say cramping (not craning!) update: I am on my last 5 days of the every other day HRT regime. I'll get back to you! My bladder OAB is bad right now so went back on Vesicare for a while. 

    • Posted

      Cindy, You are so right about the Protocols!!  Medicine had changed so much. That is why my husband has retired. He didn't like what was happening to medicine and patient care. It isn't just the doctors it has a lot to do with insurance companies which make decisions for the doctors. For example,  I have a topical medication I have used on my heels for several years and my heels get very hard and peel (part of psoriasis.) This is a compound which works for me. When I went to reorder last week I was told insurance won't pay anymore and it would cost me $1000 out of pocket. That is such BS. Anyway back to HRT,  I was an am now again using Premphase. I tried the separate estrogen and progesterone pills and the progesterone was intolerable. So I went back on Premphase until I got the cramping last year. But as I have written I'm trying it QOD and so far so good. hot flashes very minimal now and I feel better overall. So glad you wrote. 

  • Posted

    I am 63 years old and my doctor has been advising me for the last three years that I should go off of HRT. I am finally weaning myself off, rather abruptly now near the end, because I had a stroke. My particular situation is that it was found recently through an echocardiogram that I have a hole in my heart and the blood clot got to my brain through this whole or flap.

    I am in shape, not overweight, and eat well, and took a baby aspirin daily. My advice to you all is that you might want to consider verifying that you don't have what one quarter of the population has and that is a hole in the heart that did not get sealed after childbirth.

    Best to you all.

  • Posted

    Hi Elsie, I know someone has already recommend taking red clover and what's called bio identical hormones, but if you want to go the really hippy route you can actually grow sprouted foods that contain all these plant hormones on your windowsill. I don't know if you ever sprouted mustard and cress as a kid but similar to that and you can sprout red clover itself it only takes a week. The supplements we are being offered are extracted from plant like this , so it makes sense to grow them if you can, and much more natural. Look on line for stuff about growing your own HRT if this interests you. This is what I am doing. I get the occasional hot flush if I forget to grow but nothing more and I am 55

    Best wishes,

    • Posted

      Hi, I took Red Clover complex for about three months but it made me bleed so I stopped it.  

      I am fine without anything now, except Vagifem which is helping with my problems there.  

      As I am 67, coming up for 68 I really don't feel the need to take any form of HRT any more.

      If the Vagifem causes me to bleed as well then I will have to stop that also.

      Thanks for your comments though, interesting.

      Best wishes to you.

      Elsie.

       

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