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[Madge79]

Hey all

I’ve been on HRT a few years but recent blood estrogen levels are incredibly low.

Tried changing to spray,patches  and sandrena but each thing I tried was 
Worse than the one before! Resulting in super low blood estrogen levels.

So I found myself back on the old estrogel 3 pumps. I didn’t feel great but not horrific just plodding along. Anyway I got fed up and thought to myself I wonder if I even need HRT anymore I’m going to try coming off it.

Well I reduced to 2 pumps and a week later had a horrific migraine that lasted ages, felt really rough for a good week and my joints hurt and I had tinnitus and crazy anxiety. So I increased myself back to 3 pumps and slowly over a week started to feel slightly better but still not great. I started the utrogestan phase a few days later and felt rubbish had night sweats and couldn’t sleep. So impatient as I am I then decided that my estrogen must be too low for the progesterone so made the decision to whack the dose up to 4 pumps. So I went from 3 to 2 then to 3 and then to 4 all within 2-3 weeks.

Low and behold after a few days on 4 pumps I am now having yet another hideous migraine. My health anxiety has kicked in big time and I’m convinced I have a brain tumour or even a spinal tumour (most of my migraine pain is actually in my neck and shoulders) and I’m freaking out. Along with this migraine has come a return of night sweats, dry eyes and anxiety, can this be due to a sudden fluctuation not just low estrogen?

Just after your lovely opinions on whether I should drop back down to 3 or now I’m on 4 just ride it out! Chances are I need to be on at least 4 anyway as my Estradiol levels are so low.

Anyone had a similar experience when tinkering with their doses?

TIA ❤️

[Pippa52]

Hi Madge so very sorry to hear you are having such a rotten time.  I can relate very much as I used to be on Oestrogel for over 20 years and then with the shortages have had to swop around from spray to gel to patches etc etc.  I have had horrendous migraines with some of the medication and having been on Oestrogel for all those years went back on it when it became available again thinking all would be well which was so NOT the case.  The formulation had definitely changed a bit however much the makers say it hasn't and I felt really ill and also found after a blood test that I literally was not absorbing it at all and have been changed on to Estradot patches.  Was told to slowly increase to a 75 patch (am uber sensitive to dose changes) and found that was too much for me and am now back down on a 37.5 patch plus a 25 patch and for the last few days have started to feel a bit better.  Every time I change a dosage I get a migraine so just wanted to let you know you are not alone.  It really does seem that until the right dose for each individual person is reached we just can't level out which also can take several months.  I do hope you feel better soon but yes migraines certainly hit me with dose changes and medication changes and I think it is going to take a while for my system to level out after the last year and a half of so many changes .  It might be worth asking your Dr for an oestrogen blood level test as at least it would give you a guide as to whether you are absorbing enough.

[Madge79]

Hey Pippa

Thanks for replying. It really is hard isn’t it? I was fine on oestrogel and then from summer last year it started to seem less effective. I put it down to long covid or being post menopause rather than peri but now I’m not sure! I too noticed the formula had become more watery.

So I tried loads of things and none of which I seemed to absorb my Estradiol went from 500 to 180, then 150, 120 and finally on sandrena in November it was 59!!!!!!

So I went back on oestrogel and it still hasn’t really be right since I get the odd mild migraine but when I’ve changed significantly (onto sandrena, lowered oestrogel to 2 pumps and then increasing to 4) I’m getting horrid migraines. The actual head pain isn’t even that bad it’s through my neck and back of my skull and feels like all the nerves are swollen up and I can’t even lie on that side of my head as so painful! I’ve wound myself up about horrid scenarios.

I’ve had a few migraines oner the years but nothing like this.

Think now I’m on 4 pumps I’m going to stick with it; my dr says he will test my levels again once I’ve been on that dose a couple of months. I’m taking it as a positive that I react to dose changes as surely that means I’m absorbing!

Like you say it’s just such a long road!

[Mary G]

Madge79, unfortunately migraines can either start at menopause or get worse.

HRT is a challenge because it can be difficult to find the right dose but generally speaking, it's better to avoid a cycle and keep the dose as stable as possible.  You should always use transdermal HRT too.

I suffer with silent migraines but it sounds like you have very painful migraines and the painful neck and shoulder you describe are very common.

Any changes in HRT dose can cause migraines to reappear but it's important to bear in mind that low oestrogen = low serotonin levels which often leads to migraines.   Too much progesterone (that is drowning out the oestrogen) or unstable hormones are other triggers.

I was able to manage my silent migraines with hormone manipulation for years but it suddenly stopped working so now I take 50mg amitriptyline which has made a huge difference to my serotonin levels.

I'm now using one pump of Oestrogel and 50mg progesterone every day.

You may have to look into migraine prevention medication if HRT alone stops working.

[Madge79]

Hi Mary

Thanks for your info it was very helpful! I always had lots of headaches as a young adult then started getting the silent ones during peri. Only had a few and I have just realised that every one I had corresponded to when I either reduced or increased my HRT in the preceding days!!!!

My oestrogen has been horrificly low for a year or so and now the migraines have changed from silent to painful.

Interesting what you say about oestrogen as I think over the last year or so mine has been slowly decreasing and my baseline is now very low. When I take progesterone that can sometimes trigger them and what you said about it drowing out the oestrogen makes total sense!!!

The last couple of weeks I made some dramatic HRT changes I dropped from 3 pumps to 2 pumps which triggered a migraine and I felt horrific. Went back up to 3 pumps then started my progesterone cycle and felt terrible so thought I know I’ll add another pump so went up to 4 pumps then a couple of days later another migraine. I went from 3 down to 2 then back up to 3 then up to 4 all within 2 weeks.

I’m really hoping if we can get my oestrogen levels up (59p/mol at last check!!!!) then it might help.

[Birrdie]

Hi Madge79  I couldn't respond to your msg because I haven't posted enough to enable messaging function.  Just wanted to respond and let you know that my migraines are resolving but it was because I found out it was hypothyroidism that I'd had undiagnosed for about 20 yrs.  I hope you get to the bottom of your migraines too.

[Madge79]

Hey!!!
Oh wow they hadn’t even looked at that for you! I had mine checked a year or two ago but maybe I will ask for them to check it again.
I triggered mine off by fluctuating my HRT too much (I think) and I’ve been stuck having daily migraines now for ages!!! I can’t tell if it’s one continuous one if loads of smaller ones. I think the latter. They are becoming less severe as i stabilised  my hrt dose 7 weeks ago but they are still there, I’m determined to give it the 3 months on a stable dose to see if it settles. But it’s really hard when it’s still going on.
You mentioned in your post you got neck ones? That’s what I think I have now! So I get what feels like neck muscle spasms which switches sides and then causes scalp muscle spasms too! It’s def migraine not just tension and it switches and comes with aura stuff (either flashing lights, dizziness or drowsiness).
Did you find anything (other than the thyroid diagnosis) that eases it? It’s like migraine pain but in my neck/jaw! So weird!
The only way I could describe it would be to say all my nerves are hyper excitable and fire off electricity randomly. I sometimes get a weird internal tremor in my arms and legs sometimes too.
Thanks for replying 😃