Honeybee2, I can completely relate to what you've been experiencing because I've gone through similar this last year. It has been absolute hell. For some of us, this is way more complicated than for others, is my conclusion. And I have come to the conclusion that I really need ongoing help from experts rather than attempting to use my regular GPs. Several of them have been completely useless. Actually, worse than useless because the things they have said have caused me way more anxiety and been outright wrong on many issues.
I have been with Newson Health from the beginning but I didn't have a doctor there who really understood the severity of what I was experiencing, to begin with. I recently switched doctors and it has been amazing and so great to feel like the doctor I'm now with completely understands my symptoms and how to approach it all. I'm now with Dr Olivia Jones there and she is great.
My worst symptoms happen at night and greatly affect my sleep. My heart beats hard and faster than usual, which makes falling asleep really difficult. I get inner tremors in my feet, hands and core at night, which makes it hard to sleep. I get hypnic jerks which wake me up just as I'm losing consciousness and I startle awake and then just can't fall asleep again. Some nights I've had only 3 hours of light sleep, many nights in a row. I've crashed my car into a pillar outside our house and I'm putting things in weird places now...
Things were very confusing for me because when I first started HRT, all these symptoms actually got worse with each patch increase until I went to A&E when I got to 75 patch. So I stopped all HRT for 5 months. But that didn't stop the symptoms either. I then re-started it on a low dose and gradually increased - but this time round the symptoms didn't get worse with the increases but also didn't get better. I got to 62.5 and had a blood test which found only 198pmol on day 2 of my cycle. (So I reckon most of that was the patch, not me.)
My regular GP told me I could increase to a 75 patch and prescribed 3 months for that. Because they ran out of patches they gave me some gel as well. Via my regular GP I've never been able to get the full prescription of what I was on, they have always been out of stock near me in something each time I need more. Newson always have had everything I need in stock.
I decided to try just the gel by itself, in case I wasn't absorbing the patches - so I've switched to that and I'm already seeing an improvement after just 2 weeks, although it's intermittent at the moment. My Newson GP said I probably need at least 100 if not higher, to override my own fluctuations. But we have to do it gradually. So I'm on 2 pumps of gel at the moment and if all this is still happening in 4-6wks I need to increase to 3 pumps. If it hasn't gone 4-6wks after that, to 4 pumps. (Then I have a review again.) I really like being given the HRT to find my own levels via the Newson GP and not having to go back to the health service GP every month to ask for an increase, it just adds so much more pressure and stress to have to fight for what I need.
I now think that what happened initially was because I'd just come off desogestrel and my ovaries had woken up at the same time and were probably making all kinds of estrogen spikes whilst I was also increasing the HRT. That was probably why everything got worse with each increase last year to begin with. Now all that has stopped and stabilised, hopefully I can get the HRT levels right.
Which is all to say: You likely need much more than a 75 patch. Your own GP will not want to prescribe more than 100, but you might need 150 or higher. And again seeing a specialist you'll be able to be prescribed that too and will have the freedom to find the right dose for you without having to beg for each increase. It shouldn't be like this but sadly it is.
Good luck, this is one of the worst times of my life - due to the lack of sleep... I really hope we can all find our HRT nirvanas soon...
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Topic: Need help feeling awful again (Read 1843 times)