Any one else developed odd symptoms after being on hrt a while?

[Itisnearlyspring]

I started HRT in my early 40s due to premature ovarian insufficiency and low bone density. It really seemed to help with the usual peri symptoms in the 1st couple of years but in the last year I have had:

A) over sensitive oesophagus - pain in oesophagus when swallowing (endoscopy showed nothing there)
B) intermittent periods of no appetite and weight loss - stomach feels hard. Don't feel usual hunger signals but no nausea and bowel movements fine
C) recurrant cystitus- bladder feels inflamed. Feel need to wee in night. Dip tests all normal.

Oddly I never get all these things at the same time. One goes away and is replaced with another and they seem to cycle every few months.

I am really not sure if any of these things could be down to the hrt and my gp does not seem to know either. Has ordered blood and urine tests but all seem normal. I don't know whether I should stop it due to the bone density concerns or not. Has anyone had similar?

Maybe I should trial stopping it but not sure whether I should taper off or not or whether getting my hormone levels tested first would be helpful.

Any ideas? I just want to feel well again. I have been like this for nearly a year now and am really worried.

I have everything apart from cystitis and I think it's hrt related. Flushes and aches are gone on it though. Menopause is a difficult area and it's hard to manoeuvre x

@dawn1331 thanks for your reply and sorry to hear you have been suffering too. Have you tried reducing your dose or found anything that helps with these symptoms?

Yes, I get all these, only I get UTIs not cystitis. The GP thinks the latter is down to a lack of oestrogen so I take vagifem for that. Unfortunately because I have had so many I am now on 60 days worth of antibiotics to sort it.

I feel stiff and uncomfortable, I’m so fed up of feeling like this.

Thinking about it my cystitus may be related to a mild prolapse rather than the hrt (isn't it great being a woman).

It is interesting though that you both get the other symptoms. I thought the over sensitive oesophagus was a really specific symptom (I have never heard any mention of it) and there is nothing mentioned online about it. After how long on hrt did you experience this?

It is interesting though that you both get the other symptoms. I thought the over sensitive oesophagus was a really specific symptom (I have never heard any mention of it) and there is nothing mentioned online about it. After how long on hrt did you experience this?

Yeah, I would be surprised if it was the HRT was causing this or the intermittent weight loss. I would keep an eye on it and go back to the GP if it continues.

How old are you now and how long on HRT?

To be honest, I'd guess that your HRT needs increasing.
And for the UTIs you probably need to start using vaginal estrogen cream.

Once you are further into menopause, you tend to need more estrogen not less.

Your A and B (gut issues) sound stress related- do you get anxious over things a lot? A 'lump in the throat' feeling is often linked to stress.

Have you had a DEXA scan to assess your bones both a) before starting hrt and b) now you've been on it for a few years?

You need one!

Knowledge is the way forward, not guessing.

@Deliadidit I think the weight loss is just down to not feeling hungry. I tracked my calories and don't think I am getting enough to maintain. I have to force myself to eat. I get periods when my hunger returns and can eat more and gain weight.

@JinglingSpringbells I had a dexa when I started hrt and then this year (3 years on). My bone density in both was -2.3 hips and spine.

When I was checked for prolapse the GP said all the tissues looked very healthy and showed no sign of atrophy. I think the cystitus is probably bladder prolapse related.

Will hormone tests show if my oestrogen dose is appropriate? I am thinking of reducing to 50mg patches from 75mg just as a trial. Also I was wondering if I used the gel instead of patches whether I could adjust the dose depending on symptoms?

Honestly i dont think 75mg touches the sides for a lot of women so i would try 100mg for 4 weeks before reducing.

The symptoms you hsve listed were peri symptoms for me, and went away when i finally got the right dose of oestrogen.

In all honesty I don't think you can risk stopping hrt. Your T scores are on the edge of full osteoporosis ( -2.5). If you stop, you're likely to be in full osteoporosis in a year or two.

HRT is the recommended treatment for young women, not other drugs.

So do you have a bladder prolapse? has any treatment been suggested? Surgery? Physio? The UTIs start because the bladder isn't fully empty and bacteria grow.

You've nothing to lose by trying vaginal estrogen.

You may in fact need 100mcgs patch or- 3-4 pumps of gel.

Hormone tests are useless for estrogen (my consultant told me this) as the levels vary over the day too much.

Are you anxious? Is that why you have the gut and swallowing issues?

if you are, increasing your estrogen might help that too.

@JinglingSpringbells I am only anxious becuase of all the health issues. On the plus size despite all of these I have quite a lot of energy and no aches and pains so I find it really hard to know if the dose is too high or too low.

I was wondering about trying testosterone as that is meant to help with bone density too.

I have already tried vaginal oestrogen but it seemed to produce a burning sensation so I stopped. I spoke to the gp who examined me about it and she thought I should stop using it.

@paranoidmumdroid1 that is interesting. At what dose of oestrogen did you have these and what dose resolved them.

It seems to suggest online that oestrogen inhibits appetite which is what makes me think my dose is too high
https://www.livi.co.uk/your-health/what-you-need-to-know-about-hunger-hormones/

The burning with vaginal estrogen is quite common but ironically, it often means you need it! The burning stops once the tissues are thicker. You could try different sorts like Vagifem, Ovestin or a really weak one - Blissel gel.

Are they testing your urine for an infection or just assuming that's what it is?

I'm not sure from what you say if you've been diagnosed with prolapse?

The link- sorry, don't mean to sound rude, but these commercial sites and the articles are not usually by proper doctors. They're often in the US and the term 'Dr' might mean something different to what we understand.

Other posters have said the same thing here- try increasing your estrogen and maybe trying vaginal estrogen again and see how that goes?

@JinglingSpringbells I have had urine dip tests and cultures but all are negative. The gp that examined me said I may have a mild anterior prolapse and thought this may cause some urine retention and the cystitus symptoms. She has referred me to gynecology for a scan and in the meantime I am doing physio privately.

I have vagifem 10mg pessaries but maybe the gel would be better?

There is academic literature showing that oestrogen reduces appetite too. I am finding it hard to gain lean mass which I know I need to do to improve bone density despite strenght training and find it hard to eat the calories I need too. I am worried that higher oestrogen will just make this worse.
Ihttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC2813989/ and
https://www.nature.com/articles/s41574-020-00423-8

After 2 years with HRT i've finally found a dose that makes me feel happy again (mh was my worst symptom, so bad it has nearly wrecked my marriage and some days i didnt want to wake up 😣).
And it's a revelation and now i realise why some women are so evangelical about HRT. And its 200mg patches. If i drop to 175mg the anger builds.
Doc says some women are less receptive to transdermal HRT so i guess that's me! Im also 6ft size 14 so Im always suspicious that average doses dont take into account me being off the normal bell curve for size.

The main side effect for this dose is poor sleep. Hence trying to drop to 175mg and realising i needed 200mg. So i address that with herbal sleep tablets / weekend afternoom naps.
Bladder urgency and apetite issues have subsided. Still get a bit of reflux. But neither off them were affecting my life that negatively so weren't a big factor in my HRT journey and i wasn't conscious of them really at the time (my life is too busy). Just looking back i can see that i had them iyswim.

How old are you op? Im 49 with 3 kids and i wish i hadn't lost years to poor mh, so happy to accept some side effects.
If you are in your early 40s im surprised they've only put you on 75mg for any length of time. With newson clinic i started on 50mg but steeped up my dosage regularly to 150mg, stabilised but not "happy" but then worsened (due to changes in the gel production i suspect) then after a bit of a crisis and trial and error have landed at 200.

And i think every medication can have side effects so weigh up the cost benefit for you personally. I would thorougly recommenf increasing the oestrogen for 3 months to see.

Has your bone density increased during the years on HRT ?@Itisnearlyspring

(I'm talking from personal experience here! Mine was pretty much like yours in my hips but after years on HRT it's close to normal for my age.)

I don't think I've read anything about estrogen reducing appetite (can't say I've experienced that!) and I wonder if HRT is relevant because at your age all you're doing it putting it back to where it should be- so not higher than normal for someone your age.

Your bone density is directly related to the estrogen dose. So going lower would be a bad move.

You've got nothing to lose by increasing it for a couple of months.

@paranoidmumdroid1 when you say appetite issues have subsided were you suffering from too high an appetite or too low? I am 44, I think my GP will only prescribe up to 100mg so will need to look at going private for higher doses.

@JinglingSpringbells my bone density as remained at -2.3 for the 3 years I have been on hrt. In the last year I have started strength training but struggled to gain weight. My bmi is only 18.5. I force myself to eat 1800+ calories per day which I just about maintain on. Would you recommend going up slowly e.g up to 100mg for a couple of months? I am just terrified it might make me loose even more weight. I thought maybe low dose testosterone might help as this is meant to increase appetite and bone density. The other issues is that I am not 100% sure on my diagnosis of premature ovarian insufficiency as when it was made I was still breastfeeding once a day so may have skewed both the hormones and my periods.

TBH I think your GP needs to refer you to a specialist for POI or you refer yourself to a private consultant.

You should have seen an improvement in your bone density. Mine went up quite a bit within a year and continued to increase (I'm old enough to be your Mum, so much older than you.)

If the HRT hasn't improved your bones it looks as if it's not high enough or you're not absorbing it very well.

Is there any chance you have other gut issues like coeliac for example of IBS?

Although exercise can help, it won't help as much as the right HRT.

I don't want to 'advise' on dose as I'm not medical (just well-read and relating my own experience over many years.)

But it's worth trying if your gp agrees.

@Itisnearlyspring I really suggest you ask your GP to arrange tests for coeliac. Initially it's a blood test followed by more tests if needed.

Weight loss is a red flag as is osteoporosis

.https://www.coeliac.org.uk/information-and-support/coeliac-disease/

Most people are not diagnosed till their 40s.

Sorry late back to this but i lost my appetite with peri symptoms and regained it with HRT.

Just to update I have now tried upping my oestrogen as I had some spare patches to 100mg from 75mg. Plus I am also changing my patches every 3 days as I am sure now my symptoms were worse on the change over day. I am only 4 days in and it may be a coincidence but already my appetite has completely returned and the pain in my oesophagus and bladder has completely gone which is a novelty after nearly a year of pain. However I feel really dizzy and spaced, has anyone else had this? I hope it is just a short term adjustment thing.

Before I upped the dose I had my bloods done privately and they were
FSH - 12.6 iu-l
LH - 12.1 iu-l
prolactin 142 miu-l
progesterone - 12.3 nmol-l
oestradiol - 439 pmoll
testosterone 0.555 nmoll
free androgen index 0.5
SHBG 110 nmoll

Based on my oestradiol at 439 my gp does not want to increase my patch but I think I should go by symptoms? Also I think my testosterone looks really low?

@JinglingSpringbells I don't think the bone density is due to coeliac as I have no other symptoms of this and all my vitamin/mineral bloods look good. It may be due to my small frame plus I was on birth control and SSRIs in the past which I now know are a risk factor. Not sure why it is not improving though, maybe the oestrogen is too low still.