HRT and general health hell: Hello, I am new... - Women's Health

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HRT and general health hell

DeeFish71
DeeFish71

Hello, I am new here and hope this is the right forum to post in.

I am 49, and in pretty bad health. I am on Levothyroxine (100mg a day) and have blood tests which come back "slightly borderline" but not enough to change the dose.

Last year, I got what started as a cold which then turned into an infection, but never went away. I had endless Doctors appointments, and a couple of courses of antibiotics, but my health has continuously gone downhill.

I was told I "could" have glandular fever, but tests never confirmed it.

It caused havoc with my periods, and had a scan, which showed things were normal. I had a period that lasted 3 weeks almost, it seemed "stuck" up me and didn;t even cover half of a small tampon. Eventually it stopped but my periods have been for a few months pretty regular, then last winter, I did not have one at all in December or January.

I also developed ectopic beats (had been to A&E a few times thinking I was having a heart attack) and the doctors there discovered these ectopic beats. I was also told I had pleurisy and costocondritis due to the chronic pain in my ribs and chest.

These did fade but had a 24 hour ECG attached and then a referral to the heart clinic, and it was confirmed about the ectopic beats. I had read that the menopause could start these, and asked if I could go on HRT to see if it would help. This was in January this year, and there was a shortage of HRT so could not get any.

Then got ill again (another cold that turned into a virus) at the end of January, and this was when coronavirus started to be known - but I never had the cough or temperature. I also had a huge lump on my inner left septum, which is still there and causes me to be unable to breathe through my nose. My doctors claim they could not see it!

Once lockdown started, I developed a really weird couple of patches on my left foot, at the side. All pustules, which crack and bleed, and are so itchy. I had similar on the palms of my hands which I had Dermovate cream for (which was useless). I tried that cream on my foot and it burnt throught layers of my skin and spread the patches.

My periods were pretty regular at this point. Then had a call from a practice nurse to do an over the phone asthma review (I suffer from very mild asthma), and she said that HRT was now available and then I was put on the Elleste 40 estrogen patch, and 12 days of progesterone pills.

It made me feel TERRIBLE. The pills made me act as if I had had a stroke, and I was slurring my speech, falling over, and so exhausted.

The nurse was extremely alarmed when she knew about this and got me into the Rapid response unit up hospital to rule out a stroke. My anxiety (which is another thing that has worsened to the state that it's impossible to control) was in overdrive. (I had tried a week on antidepressants, but had to stop them as my left pupil blew up in size and was told to get to an out of hours surgery IMMEDIATELY as I have pigment dispersion syndrome - the doctor told me to stop them dead as it could risk glaucoma and blindness).

I had not had a stroke, and had tests for diabetes and also an MRI scan, but they said it was more than likely anxiety.

I gave the HRT a go for 3 months, and my period would always start in the week that I took the progesterone which I thought was not supposed to happen until after you stopped them that month.

I decided to come off it 2 weeks ago, and was told it was fine to come off it cold turkey. I had just finished my period, but last week it returned just 6 days after. And has not stopped since. Same as last year, just seems stuck in me and either brown and dry with bits in it, or dark red/brown. It hardly flows onto a pad and a tampon it only covers about an eighth of it. Is this normal for coming off HRT?

I am now waiting for ENT to see me about my nose thing, dermatology about the foot and a scan about my periods.

Sorry about the extremely long post - I come across as a hypocondriac in some people's eyes but the pain and exhaustion and anxiety that I suffer make me feel suicidal, as well as this never ending virus hell we are all going through. I feel so alone.

24 Replies
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wobblybee
wobblybeeAdministrator

😕 It’s been some years since I fought my own battle with the menopause, at one stage I came off HRT abruptly and felt as though I’d hit a brick wall..

At the same time as the menopause I was experiencing separate progressive, debilitating symptoms, and repeated visits to my GP resulted in her saying ‘ I’ve tested for everything’.

I suffered depression and very low self esteem, and reached the point where I literally didn’t know which way to turn next..

In my case, at some stage things came to a head of their own accord..I can’t say anything has been resolved but I did eventually get a reason for the problems I was faced with.

Throughout all this I kept going back to my GP, and due to the nature of the way the practice runs I saw different doctors. Eventually I saw someone who was willing to take a different approach, and things moved on from there..

DeeFish71
DeeFish71 in reply to wobblybee

I am glad you got help, but my Doctors have been useless and see so many different ones, all who try to make out its in my head - how can visible bleeding and a chronic foot rash be imaginary?! I have tried just about everything and feel ready to just throw in the towel and rot away. Most doctors are hiding behind covid to not get patients seen too, I am finding.

wobblybee
wobblybeeAdministrator in reply to DeeFish71

I didn’t have visible symptoms, which made it seem it was all in my head..as it turned it was, but this is something that doesn’t have a cure, it’s degenerative. Really the best you can hope for when a GP can’t ‘fix something’ is to get a referral to a Specialist who is an expert. We all know the NHS moves slowly, but you have a foot on the ladder...

I’m so sorry you’ve been suffering like this. The menopause can truly be a monstrous time. I suffered anxiety for the first time in my life during menopause and only recently discovered it is due to increased cortisol during the general hormonal upheaval. It’s enough to make you think you’re losing your mind or living in someone else’s body.

My mother in law suffers with “stress” as she calls it and over the years has credited this with everything from heart palpitations to rashes - which is what prompted me to reply to you. Not for one minute do I intend to imply that it is ‘all in your head’; just that anxiety does seem to interfere with many systems of the body, including the immune system - which could explain your long lasting illnesses. If you are not already taking them I would tentatively suggest asking your doctor about anxiety meds. If you can get that under control it would at least be a good place to start.

Also, I would push for a referral to a gynaecologist. I had strange bleeding which turned out to be due to a harmless polyp in my womb - which was only discovered during an internal exam. It was removed and I’ve been fine since.

Most of all, you’re not alone. Every female on the planet goes through this, just as we all went through puberty. I hope you find a more helpful GP - and some peace of mind.

DeeFish71
DeeFish71 in reply to Jumpybean

Thanks for your reply. I have just been booked in for a scan in a couple of weeks for my pelvic area. I had one summer 2019 but nothing was found to be not ok.

I cannot take anti anxiety meds - they are usually antidepressants or in the same family as them, and because of my pigment dispersion in my eye (a condition that can lead to glaucoma), I am not allowed to take them.

Puberty was a breeze compared to this!!

Please jump over and have a look at the thyroid uk site on here.

Almost all of your symptoms are highly likely to be because your thyroid isn’t being properly treated. I’ve had quite a few of them and almost all went away once I was properly medicated.

It may be that you have menopause issues going on too, I’m in peri so I can sympathise to a point!

Honestly, please have a look, your average gp wouldnt even admit that any of these symptoms could be your thyroid! 😊

DeeFish71
DeeFish71 in reply to Murphysmum

I am actually a member of that site too and have told them about the same things and had some good advice but sadly I just cannot seem to get sorted and nothing has helped me.

Murphysmum
Murphysmum in reply to DeeFish71

Have you tried seeing a different gp?

I don’t know if private is an option for you but it cost me about £300 all in to get a script for T3 and now I’m sorted. Had tried everything to no avail before that.

I’m lucky to have been able to do that but I’d honestly advise anyone to try to get their thyroid optimal, it’s changed my life

DeeFish71
DeeFish71 in reply to Murphysmum

I cannot afford to go private at all. I do have my thyroid checked and they say it's borderline overactive, which I do not believe with the crashing fatigue I have. My doctors, like most in the UK, do not test T3.

Murphysmum
Murphysmum in reply to DeeFish71

Borderline overactive based on what? Your T4 level?

That’s just means your body isn’t converting it. They could increase your levo as high as they liked, if you can’t convert it to something useful it’ll look high in your blood but it’s not actually doing anything!

Keep pestering your gp or try a different one - you don’t deserve to live like this. It’s easily fixed and it’s wrong doctors know so little 😢

DeeFish71
DeeFish71 in reply to Murphysmum

I know but they won;t budge. I can;t even get a new GP as no more in my area and I do not drive. They turned nasty with me last year when I questioned my test results. I just wish I could see someone who could help me. I wanted an appointment with an endocronologist last year but was told "they don;t want to see you". More than likely played down my symptoms.

You sound like you have a lot of symptoms which would need a range of different specialist just so you know you don’t really need specific tests for glandular fever I’ve had it and you can’t talk and your glands in your neck swell there’s no testing just treatment you could be going through menopause but hrt is not for everyone and it’s not guaranteed that this is all menopause related it could be a range of things good luck with getting on top of things my mum is very much like you and has a range of things which need different specialist you could have an underlying condition linked to your symptoms which mum does you might not but it’s important to get to bottom of it especially if you think you have had a stroke your not hypercondriact just very sick and only so much investigation can be done at once and doctors don’t always have answers I’m sorry to say but they don’t as they are just doctors not miracle workers

DeeFish71
DeeFish71 in reply to Afrohair

Thanks for replying. I will try to persevere but it's all getting too much x

Afrohair
Afrohair in reply to DeeFish71

I totally understand my mum has been diagnosed with vascular dementia at a very young age in her 50s and unfortunately for her it's not just her memory what suffers she has strokes inflamed feet throat troubles dental troubles nerve troubles the doctors are at a lost of how to help her now because they feel it's all linked to the same condition she is constantly on the phone to doctors and getting prescriptions for different things so I totally understand what you are going through it's not a nice thing to be sick like that but I'm glad you've decided to persevere and at least try ,but I say it in the nicest possible way when I say doctors don't always have answers we want them to but they dont.last year I was diagnosed with a condition but once I've had treatment and it comes back there's nothing I can do except get on with my life and manage it a lot of people live this way.i hope you can get some medication for your anxiety and depression my mum did and sometimes it helps and also keep sociable and talk to people I'm here to talk if you need me it dosent help with all this virus lark going on but I hope you can find some kind some peace within yourself wether it's going for a short walk round the Block or doing your fave hobbies keep going ,stay strong and stay in touch with family and health professionals just for updates ❤️all the best

DeeFish71
DeeFish71 in reply to Afrohair

Thank you Afrohair - very kind of you. I do exercise but it hurts me so much, and I don't really enjoy walks as people always in the way. I have lots of friends on Facebook who are so nice and cheer me up and love my music and always have it on, but this virus has taken away all I look forward to - meet ups with my friends, seeing my parents, me and husband having a little weekend break in October, gigs, football, pubs, the lot. It;s not a help when this week been bombarded with endless calls about appointments and had a flu jab yesterday. I am always so busy with housework and my own jobs to do. The more appointments I get, the more anxiety I have about trying to organise my jobs around it and it causes me so much writing and tears and my ectopic heartbeat to go crazy. Why were these appointments not sorted in the summer when the covid cases were so low in my part of the UK? I hate wearing a mask and hyperventilate in them when I have to wear them in medical settings (I have a lanyard for things like bus and shops - and only go on one bus a week and try to keep distant from people in the few shops I go to for essentials). Thanks for your kind words x

Afrohair
Afrohair in reply to DeeFish71

Having appointments do cause anxiety because you feel like nothing will be resolved!and that they will call you hypercondriact again.sometimes you have to be demanding I know what it's like when docs think your over reacting I have endometriosis people just think it's period pain well it can keep me in bed for days and I can't walk but doctors always brush me off.i can't bend or lift.the average time for a diagnosis for my condition is 7 years I ended up going private for a diagnosis cause I looked online and knew I had it and that was before COVID I'm still on a waiting list for treatment and have heard nothing but even then the surgery won't cure me and I could cause myself more issues so I've decided against surgery for now.

DeeFish71
DeeFish71 in reply to Afrohair

You have my sympathy - I have had endometriosis and 2 operations in my lifetime. I so hope one day soon that you can get help from this horrible condition xx

Afrohair
Afrohair in reply to DeeFish71

Some of your symptoms could be linked to it if you still have periods .I have had problems with my heart since having it and had several ecgs a lot of symptoms come with endo and it can come back some people are cured with hyesterectomy some not .and you may know it causes havoc with your hormones x

I have been looking into “perimenopause” which is the transition process before menopause - years before meno...

It’s very interesting and I believe I have been having peri symptoms for years now including migraine headaches to name one. There are YouTube videos on perimenopause. Idk what age group you are, but this is worth looking into.

I’m suffering fr anxiety like never before.

DeeFish71
DeeFish71 in reply to Esda

I too have terrible headaches, most days.

It’s worth checking your hormones, thyroid..

DeeFish71
DeeFish71 in reply to Esda

I do have regular blood tests and the only thing they found not normal, was that I was low in Vitamin D3, so I immediately bought some D3 vitamins. Been on them 8 weeks nearly and not seen any change in how I feel.

Esda
Esda in reply to DeeFish71

Same here. My vit D was very low so my pcp rx a boost for 8 wks and a lab test afterwards. Magnesium chloride was also recommended for migraines.

Just to share, I stumbled upon Tania Elfersy on YT and podcast. She has a website: “The Wiser Woman”.

You might find her insight interesting.

I’m always hesitant on taking meds, but I understand that it’s available and you don’t have to suffer. I just fear the possibility of side effects, so approach it conservatively-naturally/holistically.

Our bodies has the ability to heal on its own. I love watching National Geographic. Animals in the wild get sick/hurt just like humans and they use natural remedies fr Mother Nature. The beauty and logic in that is amazing if you think about it.

Meds will give us relief but will also quiet down what our body is trying to tell us.

I know it can be tough. I probably wouldn’t be here if I didn’t have this anxiety. I also accept that midlife is a sensitive time. Women go through so much fr having menstruation to childbirth to perimenopause to menopause. These transitions are sensitive times in a woman’s life.

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