Hi everyone,
I'm really struggling with side effects.
Have been on combined patches for 2 years with varying degrees of success.
Have now changed to estrogel 2 pumps and Utrogestan 100mg in the past 2 to 3 weeks, have had to stop Utrogestan, took it
I'm really struggling, any advice please, have tried to speak to gp but they don't really know, it ends up with me trying to make my decisions and I just don't know anymore.
Dear Sadie
I'm so glad I came across this post.. You're MY story and in the very week you posted , I ended up going to A&E 3 times, with the doctors, and finally my GP when they got the notes, thinking it was all psychosomatic and I was basically mad.. If they'd only done the research and asked me if I had been taking any new medications in the last couple of weeks, then it would have made complete sense. Not only did it affect me physically, it affected me mentally in the end, hence the suggestion by the GP to refer me to a psychotherapist.. I even reported the side effects (I'm inclined to think it was more a severe adverse drug reaction !) to the Yellow Card system. Like you, my supply of the conti-duo patches ran out last December. They worked perfectly fine for me, I felt "normal" on them...My post menopausal symptoms where mostly severe mood swings, to the point of feeling suicidal occasionally.
I could cope with the other stuff, dry skin/ vag, flushes but it was the low mood I couldn't cope with. I came off the patches 4 months before by default before going back on them last year ( as the HRT nurse to review me, was off sick , so I thought to myself, I'll go cold turkey and see what happens). That was last May. By end of August ( it seems about 3-4months by body changes dramatically) /beginning Sept my increasing dizzy spells and bad headaches progressed to quite bad vestibular migraines, where the room was spinning so much I couldn't stand/walk straight and was afraid to get out of bed. I went for an emergency GP appt and he suggested to go back on the HRT patches. With a few days I was back to normal again. Unfortunately that wasn't for long because by the Dec when I was due to get a new supply, was when the (global) supply issues with the dual conti-patches were critical. In error, I was mis-prescribed just the Estradiol patches at the pharmacy without being prescribed additional progesterone I didn't know , (nor did the pharmacy assistant, it seems) that I had to have Pg due to the fact I still had my womb and it was necessary. So, 3/4months later ( as I said that's the time of my body barometer for changes) . I started to bleed.
By week 3 it was heavy and clotted enough to be concerned to go back to the GP. Next thing- fast tracked to Gynae clinic for biopsy/hysteroscopy. The day after the referral, my GP called and said it looks like you are not on Pg ( I had literally found out the previous day from a ex-nurse friend who was also on Utrogestan, with no ill effects, who told me that I should have been). In hindsight the costly Gynae investigations all could have been avoided.. However, I was put on 100mg Utrogestan orally and my nurse friend said take it at night on an empty stomach as it helps with sleep. By the second week I was quite unwell...
Granted, it probably was compounded by a couple of factors - the fact I have hypothyroidism, it was a bit unstable at that time -(possibly due to the Pg? we shall find out, I'm still getting my Levothyroxine meds levels looked at). Also it was a stressful time for me as I lost 1 job and starting 2 others due to the Pandemic, plus the additional gynae investigations not helping the anxiety levels. By the second week on being on Pg I had to call my GP again and say I'm really not well , could it be COVID, I'm starting to think? As it happened to be the next day of my hysteroscopy, my GP suggested I get my full bloods checked , everything-FBC lipids, Haemaglobin, Ferrous, Thyroids, the lot. That was 4 days before your post, Sadie, and at that point was still taking Utrogestan in blind faith.
My side effects, were as follows: breathing difficulties, tightness in the chest, headaches, muzzy head, palpitations, , nausea, chest pain, pins and needles in left arm ( the day of the A & E) awful gastro-intestinal pain and cramps, confusion ( a few days before I presented to hospital, I stood in a neighbourhood road that I know very well after living in area for 19 years, trying to post a letter in a neighbours letterbox and suddenly I didn't know where I was, I had to ask someone), disorientation, visual disturbances, tachycardia( AFTER a yoga session , feeling very relaxed, I noted my pulse was a bit fast, my DH put his sport watch on my wrist and said I had a resting heart beat of 110!), proprioceptive difficulties (I missed my mouth trying to put a water bottle to it to drink, and found it very difficult to place my fingers on the phone keypad to write), and my DH also observed that my pupils were dilating in and out...
3 days after the "confusion" episode, whilst I was on induction at one of my new jobs,(I did a short stint of domiciliary care work) rushing around. I had what I can only describe as a possible "fibrillation" event. I had to leave the client's home immediately I felt so unwell, much to the shock of the (high risk , shielded) client and the care manager, both crying "COVID"! I went to get tested ( the second time , I might add) to be sure. I wasn't positive, but I knew I didn't have "the virus" as my symptoms were all too different, but it had to be ruled out-plus the client had to have government evidence via the test results for their re-assurance and the customer satisfaction of the care agency.
That was the Sunday. By Weds I had presented to the urgent care centre twice, (first time sent away) Called 111 3 times and attended to by paramedics, second time of presentation at the UTC, they sent me on to A & E after an "abnormal" ECG. After more ECGs and blood checks, the heart attack enzyme, Triponin, was elevated enough to suggest a "heart compromise". They said they would check again in an hour or so and if it didn't get better they would admit me to the cardio ward for further investigations. They didn't say a heart attack, but the A & E Dr said that there was some signs of damage but hopefully not permanent and to "keep an eye on it." Never did they ask about my HRT intake.. Eventually I was sent home with no suggestions of follow up with the GP for a review of my meds. I don't think enough medical staff ( especially A & E) know about the issues with certain hormones. The next few days got a bit more surreal, my behaviour became more erratic, I started getting paranoid that we getting poisoned , that the Chinese had something to do with it ( the HRT pharmaceutical companies that produce some of the patches are from Jansen and they are own by Johnson and Johnson, a US company that have 6,000 workers in China) . The pandemic and knowledge of the US/China drug wars obviously starting to take its toll on my psyche. As it has with many people, but I genuinely think (in hindsight )the hormone had affected it more...
So after a week of hell, and seeing the GP the following week, only myself and my husband came to the realisation that my symptoms and my behaviour had only changed since I started taking the Utrogestan. So I came off it- without the input of GP. All they advised was, if I was coming off Pg then I couldn't stay on my Estradiol patches . I though therefore I would have no HRT whatsoever - I'd be going back to square one. In my area, the NHS does not provide ANY other alternative to this for women still with a womb , apart from inserting a Merena coil. I could have had one insert just a week earlier when I had my hysteroscopy, but I've heard bad things about them and wasn't keen in having something inserted high up inside me where it wouldn't be a quick process of removing it if it didn't work out for me... Especially given my unique response to certain hormone treatments it seems in hindsight . All my GP wanted to do was refer me to the Mental Health Team. Also it turned out from my full blood count that my cholesterol was quite high..
I've since spoken to a private Gynaecologist and my GP surgery "menopause expert", bemoaning the fact, that if Oral Pg doesn't work for me , what is the alternative? She said there was none and the likelihood of getting the dual conti-patches is virtually impossible. I said that If I was going to continue with the Estradiol patch, then I would try the Pg non-orally. ie put the capsule up my vagina. She said I cannot recommend you do that as we are not licensed... I asked her why has the production of the dual patches , stopped and why aren't gov health departments and pharmaceutical companies doing something about it? I continued by saying that it seems that no-one cares ( apart from some post -menopausal women of course). She agreed with me and said no-one cares!
So, to date: I take 50/75mg (alternating patches atm to test my levels) of Estraderm and 100mg Utrogestan PV -per vagina that is...Plus, I dab a bit of Pg cream on (imported from the US I might add because I can't get gel or cream from my GP).
5 weeks almost to the day of stopping the oral intake of the Pg and I'm as right as rain.. The only one POSTIVE side effect of taking the Pg orally, it seems, during all the time of the bad systemic side effects (and fortunately, IS still there now, that's why I continue to take it) is that it has increased my
libido, which was virtually non-existant even before the menopause!
...So that's my story, sorry it's a very long one, but I had to tell you all of it , just in case there's someone out there that has gone through the same thing as me and to say you are not alone... xxx
