Low hormones, starting HRT help

[halloween88]

I'll try and keep it as brief as possible. Sorry to post in menopause when I am not actually menopausal (but I thought I was) I thought it was the best forum to discuss HRT and hormones.
I am a 44 year old woman who has 3 teenage children and my periods stopped quite abruptly a year ago. This occurred at a time of high stress and some other health issues started alongside it but stupidly I just put the periods stopping down to peri menopause and left it at that (busy!)
Fast forward to a year later and I am a shell of myself in that I hadn't realised quite how lousy I have been feeling. No enjoyment in life, grumpy, no libido, just really flat and sort of dead inside putting one foot in front of the other.
I went to my GP to explore HRT as the nurse picked up how dry my vagina was at a routine smear, but my GP rightly said they wanted to check my hormone levels via a blood test first. I was surprised to learn they were very much abnormally low. As in my LH and FSH were so low they were both less than 0.2.
IU/L and my testosterone was less than 0.4
Cortisol was highish but normal high at 572 nmol/L
Oestrogen was less than 44 which was below low ref range.
Prolactin was actually low (they originally suspected a tumour on my pituitary gland but brain MRI has more or less ruled that out)
So my tests showed undetectable gonadotrophins along with low levels of oestrogen confirming that the issue with my oestrogen production is related to my pituitary gland not producing enough.
So I'm not menopausal but probably functional hypothalamic amenorrhea.
I am a normal weight and we went through my lifestyle etc and there has been a conclusion that stress brought this on a year ago.
I was sent to an endocrinologist as they were concerned about the pituitary gland and that consultant started me 2 weeks ago on HRT:
Elleste Duet 1mg tablets.
I don't have a cycle so just started taking the pack and have just finished the oestrogen part (the white pills) and am on day 2 of the progesterone.
I have had a DEXA scan which showed no signs of abnormal bone density which was a relief.
I then had my planned appointment with a gynaecologist yesterday who reviewed the findings of the endocrinology dept and said he wouldn't have prescribed what they have given me in my circumstance.
He said for a start I should have been on 2mg and not 1mg.
He has instead prescribed me -
Oestrogel pump patch 750mg 3 pumps daily
Uterogostan 200mg 1 x OD at night (pharmacy is querying this as they said this is a vaginal treatment?)
Testogel sachet 40.5mg 1/8th of a sachet per day.
I am due to pick this up early next week.
Now this is the thing, I am currently white knuckling my way through my days for this last week.
It's like every (bad) feeling has come flooding back: feeling down, a bit angry, bloated, wanting to cry all the time, can't stop eating PMT style (it's like a daily binge I have no control over) I'll be the size of a house by Xmas at this rate. I have also broken out in PMT style spots on my face and I am incredibly bloated so all like an imminent period which of course I haven't had for the past year. I've been like this for a week now.
I have just ended the white pills in my pack which I believe to be the oestrogen and started yesterday the norethisterone part so can't put it down to the norethisterone part as I only started the blue pills in the elleste diet pack yesterday.
I am just after some wisdom from anyone on here. Is this normal what I am feeling, will it settle. I feel like absolute crap. Not sleeping either and I had hoped the HRT would help me get some sleep!
I am due to pick up my new HRT meds on Monday from the pharmacy (they had to order in) and I am in a pickle and don't know what to do for the best.
The gyne suggested I finish my current pack so I will finish the norethisterone and then go on to his new HRT regime which he has prescribed and I am due to pick up next week.
Are these out of control feelings normal?
Like loads of PMT feelings coming rushing back and me feeling like I am out of control with my feelings, my body argh (I currently look 6 months pregnant from bloat) and can't stop eating crap. Will it end (it's been a week now) is the fact that I am not menopausal and have basically walked round with very low hormones for a year part of how my body is responding to starting HRT?
The gyne said medically I need to take it as my hormones are so low and I can't be left like that. His diagnosis was hypogonadotrophic hypogonadism.
So sorry this is long, I am completely desperate and dreading starting a new HRT regime next week. I am trying to run a house, work full time and run around after 3 teens whilst white knuckling my way through each day.
Thank you for any advice or experience you can give, I appreciate it.

I am wondering if my very low hormonal starting point may be a contributing factor. I could also ask for this to be moved to another health board as it doesn't look like anyone can offer any help on this topic in here right now.

Don’t move your thread, you’re in the right place! People will be long to help.

Hopefully @JinglingSpringBells will see this soon.

Sorry to hear about all your problems, it will get easier I promise.

I have tried 3 versions of HRT before finding one combination that works for me. Based on that my advice is take it easy start with small doses and build up.

I'm pretty horrified that you are going to have 3 pumps of gel from day one, only as I had an allergic histamine reaction and that seems poor advice, my reaction was far from pleasant and made me have panic attacks and feel suicidal, very extreme but going straight in with high doses seems irresponsible.

I'd maybe go back or just do 1/2pumo fur a few days and gradually build up over 6 weeks.

I'd be tempted to hold on the testosterone as well, get the progesterone and oestrogen levels working feeling better and then gradually add that in.

Also bear in mind your physical size, HRT is prescribed in pumps but I'm 5'2 and was told 2 pumps it was like an overdose, the dose should be adjusted fur your weight and build.

I take the mini pill and use half a patch that I replace on a Sunday & Wednesday but that's been really helpful in stopping symptoms I'll move to a full patch in the new year.

I hope you can find your balance but please don't panic there will be a good combination and dose that works for you.

Hi @halloween88 (thanks for the tag @DustyLee123 )

Not sure I can help much but will try.

Sorry you've had such a rough time. It WILL get better but you need to give it a bit of time.

First, I'd try to 'ignore' the medical diagnosis terminology, ( your pituitary gland not working properly) because whatever is causing your low hormones is giving the same result as ovarian failure (ie menopause.) So you are in the same place as a menopausal woman.

I'd not focus too much either on how you feel in the estrogen-only tablets at the moment. It's far too soon to expect to see an improvement on any HRT (the guidance is give it 3 months) so the way you're feeling won't be connected to hrt, but it is connected to your loss of estrogen.

Your drs have been really good to pick this up because loss of estrogen at your age has a huge potential negative impact on your bone and heart health.

I am confused by this however - Oestrogel pump patch 750mg 3 pumps daily

If you are using the gel (in a pump) that's 3 pumps - but it's not a patch. It's gel you use on your thighs (or upper arms.) Each pump is 0.75mgs of estrogen. (You can see this on the cardboard carton.)

Stick with it and give it a good 3 months. You may need to go to 4 pumps or more, as you have almost zero estrogen.

4 pumps is absolutely fine but if you go above that, talk to your Dr about increasing.

I'm pretty horrified that you are going to have 3 pumps of gel from day one, only as I had an allergic histamine reaction and that seems poor advice

Please don't frighten her!

Your reaction was very unusual (rare) and the OP has almost zero estrogen of her own.

She's a very different 'case' from women who are in natural peri meno.

I'm on sequential pills and was advised to start with the blue ones first. Mine are blue, white, red.

Did your Dr tell you to start with the white ones?

Also bear in mind your physical size, HRT is prescribed in pumps but I'm 5'2 and was told 2 pumps it was like an overdose, the dose should be adjusted fur your weight and build.

This is so untrue and I wonder who told you that? Is it a GP?

The amount of estrogen needed is nothing to do with weight or height. The amount of estrogen we have in our bodies pre-menopause doesn't relate to height.

Well, that's rather weird!
What was the reason for that? Why would you start with progesterone?

Thank you, thank you @JinglingSpringbells. Even reading responses and knowing someone out there is listening to me and caring enough to reply means a lot right now.
Great explanation - whatever the reason for my low hormones, I have ovarian failure so am in the right place.
My new regime (which I haven't started yet) the pharmacist picked up on the 2nd item not making sense on the written prescription too so she said she is going to contact the gyne consultant and confirm what he wants prescribed. He has said I need to start fairly high to try and get my hormones back up as they are just so low right now and it is like medicine for me as he said it can cause health issues down the line so important I take the HRT despite me feeling like i have the worst anxiety and PMT feelings of my life right now. I am invested and despite feeling so awful, can only hope this will get better and I need to ride it out for my health and to see brighter days to come.

Thank you @GettinChillyHereFFS they were a blister pack and day 1 -16 was white and I believe estradiol and days 17 - 28 are the green colour and estradiol/norethisterone acetate. I have no cycle so no starting point to work out so just started day 1 the day i got the prescription....

Yes, you need to prescription sorting!

There is a 75mcg patch. But whoever wrote it is conflating patches and gel. (it seems).

One thing that could help- and I'm not sure why it wasn't suggested because I'm pretty sure my consultant might have - is to start on estrogen only for several weeks before taking any progesterone. This is safe, because there is a regime using an HRT tablet (called Tridestra) which is exactly that - 10 weeks of estrogen only .

I'm not saying ask for Tridestra, but some consultants will suggest getting the estrogen level right (optimised) first by delaying the progesterone .

I think you might also query the testosterone as I thought that was only added after a certain amount of time on estrogen, when the right levels had been established.

Is your consultant experienced in prescribing HRT and menopause? (because some aren't and every gynae has a very different specialism.)

@whyamiawakestill thanks for your reply.
I haven't started the new regime so I expect the pharmacist will explain more when I go to collect.
I am 5ft 4 and smallish (which is why the 6lbs sudden weight gain since starting HRT has been noticeable!) and the prescription definitely says 3 pumps from day 1. It may be my very low hormonal starting point. I don't know. It's certainly going to be a bit of a ride for me. I am just so anxiety ridden (no anxiety prior to starting the HRT) and feeling so out of control of my feelings and mood and feel so low and PMT like, I just want to feel better but fear it may get worse before it gets better.
When I get my new prescription I'll post it here as the pharmacist was checking it with the consultant prior to dispensing to me.

@JinglingSpringbells thanks. The gyne appears to have taken over from the endocronologist in terms of HRT prescribing as he said he wouldn't have started me on Elleste duet 1mg tablets hence the new prescription I should be able to collect next week (I'll let you know exactly what this is as it's confusing right now)
He is a consultant Obstetrician and Gynaecologist. Listed on his website are:
Hysterectomy, Endometrial resection, HRT, vaginal prolapse surgery.

has a special Interest in minimal access/laparoscopic surgery with a Diploma in advanced gynaecological Endoscopy from University of Surrey. He specialises in laparoscopic hysterectomy, endometriosis and ovarian cysts.
This is what is listed as what he offers:

@halloween88 He sounds good on paper anyway! If you want to PM me his details I can have a look. (No problems if you don't want to.)

@JinglingSpringbells I will do that. Thank you.

I'm aware of it being rare but it does exist and women need to know it's a risk, so if they have a reaction they know to stop taking the oestrogen.

It's also my lived experience and not to "scare" the OP just to be cautious.

Do you not think 3 pumps straight on day one is excessive?

Do you not think 3 pumps straight on day one is excessive?

For someone in peri, yes.

I don't think 3 pumps is excessive per se for the OP as she has almost zero estrogen and would need that dose and maybe more.

It may be better for her to start on 2 pumps and then work upwards depending how she feels.

With a low FSH, I am surprised you're in ovarian failure. I had this and my FSH levels were sky high - in the hundreds.

However, blood tests aren't massively helpful as they're merely a snapshot of the moment the bloods were drawn.

If you've gained weight on HRT and don't feel like yourself, the levels aren't right for you.

I was allergic to norethisterone, so went to see a specialist who didn't prescribe it. She also prescribed testosterone for me too. I also needed far more progesterone, and less oestrogen than most - the levels of oestrogen you're taking would have made all my issues worse - I know this because I was initially put on way too much oestrogen (and ot enough progesterone. At one point, I needed 400mg of progesterone a day). Once my HRT levels were 'right', I dropped the weight I gained, as well as feeling like myself again, libido restored, and the myriad of other symptoms abated.

Either way, your HRT isn't right for you. If you're able, go see someone who specialises in women's health and uses something other than norethisterone.

Hope you figure it all out. HRT can be life-restoring.

Sorry you’re feeling so overwhelmed.
I am in very similar situation as you, but 8 months down the line.

I am not an endocrinologist but am an experienced HCP, and have spent the last 8 months reading numerous journal articles.

I have had a decade of vague worsening symptoms, increased fatigue, poor sleep, reduced exercise tolerance, weight gain, vaginal dryness, reduced libido.

Was originally advised to sort out my work life balance, I was working a rotating days and night shift pattern, so 7 years ago I dropped to part time days only, then became pregnant and had DD nearly 6 years ago.

More recently, I’m now 42, I have been dismissed by GP when complaining of no libido, told I have “a young child and need to carve out more time for sex” and that it wasn’t my hormones as I am “too young and periods too regular”. Eventually with DD sleeping consistently in her own bed through the night, and my libido (and all symptoms) getting worse and worse, and not being able to face discussing my sex life with a stranger again, I paid for a private blood test in April this year.

oestrogen 54pmol/l
FSH 9.6iu/l
Testosterone 0.4nmol/l

TSH 0.04mU/l
T4 16.7pmol/l

I since had a repeat thyroid function test with normal results. Normal thyroid antibodies, normal prolactin levels and a normal MRI of my pituitary.

As a result I’m still, like you, none the wiser.

I am currently on 150mcg Everol patches (my oestrogen levels have been stubbornly low), Utrogestan 100mg vaginally day 15-28, and 5mg testosterone daily.

My endocrinologist now wants to investigate for Cyclical Cushing syndrome, but for the Cortisol stimulation test I have to stop taking HRT 6 weeks before, and may require some repeat testing. The thought of being off HRT and back in the dark place I was last April is terrifying.

What I have realised is most doctors understand very little about complex pituitary problems, and even endocrinologists can be baffled, so don’t stop pushing for an answer.

The treatment for hypogonadotrophic hypogonadism is standard HRT, the only time they give Gonadotropins is if you want to try to conceive, so don’t worry about going down the HRT route, you need these hormones.

If your cortisol is on the high side, then I would have thought a stimulation test would be indicated and this is something to do NOW not make you start and then stop your HRT in order to do it later.

Did you have contrast injected for your MRI, this is important for seeing all the potential issues of the pituitary? Having said that 9% of people with hypopituitarism have nothing abnormal visible on MRI (I’ll link some journal articles later, as I’m in the car at the moment).

What were the results of your thyroid function test?

@highfidelity I think the OP has covered some of the ideas you mention.

The OP has said she is changing from tablets (with Norethisterone) to gel/ patch and Utrogestan. She's also only been on HRT for 2 weeks so it's a bit too soon to make a call on the dose (but it's being changed, anyway.)

Her blood tests are not the usual ones for peri (which are unreliable, as you say) but for another condition caused by her pituitary gland not working. her FSH reading won't necessarily apply as it would for 'normal' peri.

And she's seeing a gynae, after being diagnosed by another specialist.

@JinglingSpringbells

I know, but am just offering some other suggestions. As you might recall, I had a troublesome perimenopause and none of the usual things applied to me. I also saw a gynae and an endocrinologist privately who had no idea, but the women's health specialist I found was helpful and got the issue immediately.

How are hormones work is so unique to the individual, and it's still an under researched and little understood area as a result. As someone who is now dealing with other health concerns due to my hormones, I am grateful that I wasn't able to take norethisterone because that would have made my issues worse.

I am on testosterone and when I started it I was advised had to up my oestrogen pumps. I would stick to as prescribed but it takes 3-6 months to T to kick in fully. Feel so much better now. I have also started weights regime to combat my muscle loss which is really helping

The Dr or chemist didn't tell me which to start with, I asked on a local Facebook page (demographics are older) and everyone said start with blue.

I had no cycle anyway, I was taking continous pills before and was bleeding constantly, so dies it make any difference?

You're fine then, mine weren't labelled with day numbers. Listen to your Dr, I asked on Facebook 😂