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[Scampidoodle]

I forgot after reading your original post I also woke mega early every day before, with an adrenaline rush it was awful. Taking antihistamines at night helped a lot as histamines start rising in the evening. My hair was shedding a lot and I can really empathise with the jittery fluttery heart feelings! Like you feel anxious but you’re not anxious! I have that with this flare up and it’s a horrid feeling. It did go away last time. It all did! So just to reassure there will be something that helps! X

[joziel]

Oh thank phewy for that, you've given me hope. Doctors I've spoken to seem to have no idea about all this - even experienced HRT/menopause specialists. Yet I see it appearing so much on these online forums and FB groups and some women end up stopping HRT because of it.

I know that sort of doctor who can help me, is going to have seen this before in relation to HRT and, when I start to describe it, is going to recognise it and know exactly what I'm talking about.  Because it is SO related to the estrogen. So I begin to tell a doctor, filled with hope, about what I'm experiencing - really wanting to get a response like that. Instead, I get blank faces and slight frowns and all they seem to be able to suggest is reducing estrogen or increasing more gradually.

Tina Peers is on my list of people to see if I need extra help or think this really could be histamine related so it's really good to hear she helped you.

I don't think it's as simple as estrogen = bad because wowsers it's helped with so many awful symptoms I had from low estrogen - especially my brain. And I don't think it's about estrogen dominance, it seems that's not the right way to look at it either. So much as - we have too much histamine for the body to process and detox us from, leading to side effects. And estrogen gives us more histamine, but it's not the cause of the problem in the first place - or every woman would be dealing with this on estrogen.

I had the same experience on a combined pill when I was 21, which is interesting. And I have a history of mild endo. Which is okay at the moment with extra desogestrel progesterone. 

[Scampidoodle]

Yes true, oestrogen isn’t bad at all. Tina Peers view is that histamine intolerance and mast cell issues are very common and if she has someone who cannot settle on hrt or has strange symptoms on it, this is usually the cause. In my own case, she did genetic testing and my issues with breaking down oestrogen plus a genetic issue with methylation (40% of us have the same gene) cause oestrogen to not break down and histamine to not get processed at a normal speed. There is usually a root cause. Interestingly my blood tests for oestrogen are always v v low but I’m not in menopause probably very early peri.

[Scampidoodle]

And no, GP’s know nothing about it nor the highly regarded meno clinic I saw when on the hrt and having problems!

[joziel]

Yes, my Newson GP didn't have much to say about it. Nor any of the other GPs I've spoken to.

What was the genetic test Tina Peers had you do, was it a blood test or a saliva test - could it be done at home, I'm wondering, from afar, or would I have to travel to her!?

I am also early peri-menopause (44yo). I am pretty sure that my symptoms have been sped up by taking desogestrel for so long (9 years) - because it suppresses estrogen levels coming from your ovaries to the early follicular stage by keeping the ovaries kinda dormant. Which is what I needed to do, for the endo - and it worked for that. But I think that, combined with peri, was just too little estrogen for me to get by on causing an early peri-menopause. But I can keep the ovaries dormant with the desogestrel and add the estrogen in with HRT so I still get estrogen - that should work... if I can just not have these estrogen side effects 

[Scampidoodle]

The genetic testing was remote, she uses a company called lifecode gx and the test was posted to me. There are various types of tests. I had the oestrogen pathways mapped, methylation and histamine pathways. My histamine pathways were fine (for some people they don’t have enough of the necessary gut enzyme to process histamine) but my oestrogen and methylation was what impacts. I have to take various supplements to support these processes. But of course as I felt well this last year I stopped taking them. Mistake! So slowly reintroducing!

I also see her remotely I don’t live anywhere near any of her clinics. She’s pretty booked now as she now runs a long covid clinic too due to a lot of these symptoms linking with long covid. But there are others at her clinic you can see. Xx

[joziel]

That's great, thanks!

[joziel]

For anyone following this thread at any point, here is a great link I found from Tina Peers website which includes a list of her recommended supplements: https://static1.squarespace.com/static/5a4269f28c56a85fe95206ea/t/5fa6d3044f8f02449aaacea3/1604768517153/Dr+Tina+Peers+-+Histamine+Intolerance+Factsheet+-+Nov+2020.pdf

(If the link stops working, find her website and see if it is downloadable from somewhere there.)

[joziel]

Day 1

The no-yoghurt chia seed pudding clearly needs some work as it was pretty gross this morning  I added coconut milk and a splash of water instead. But it just occurred to me that I can still have milk, so I could try it with that tomorrow. I made it this morning and gave it 45mins to soak the chia seeds - because leaving it in the fridge overnight might make too much histamine.

No coffee    I had frothy milk instead. Not quite the same 

Even doing this for 2 weeks seems a tough challenge 

[Scampidoodle]

Hi are you still getting the ‘weird chest flutters, anxiety jitters which isn’t actually anxiety’ thing? That’s my worst symptom currently along with the hot flushes/heat intolerance.

I could never get the hang of chia pudding!! X

[joziel]

So the thing is that the symptoms have been getting better the last 5-7 days or so anyway. I do still wake and feel a little bit throbby and fluttery but I have trained myself not to wake more and to go back to sleep - this isn't something I could do before so either I've got better at ignoring it or the symptoms are not so intense so it is possible to sleep through them more. (I think the latter.)

But I do still get these episodes sometimes, yes.

Probably too early to know if the low histamine diet will help. I am really missing coffee and yoghurt    And a little bit of dark chocolate.

[Scampidoodle]

Are you in a progesterone phase of your cycle? Wondering if that has improved things x

[joziel]

I'm on continuous and all my hormones are the same every day, so nope...

[Scampidoodle]

Ah ok, sorry forgetting you’re on hrt. Are you on continuous as you’re post meno or just worked out better for you? X

[joziel]

Because I have a history of endo and continuous is best for endo sufferers. I was on desogestrel for 9 years before that and rarely bled on it, and I'm still on it, so I think the hope is I continue not to bleed on continuous. If I do get breakthrough bleeding, I'll try the 25/28 regime and have a few days off progesterone but not as long as sequential.

This low histamine diet really SUCKS  I don't even know how I will make it 2 weeks, my goal right now after today is just one 

The main issue is not being able to have tea OR coffee. I am so over peppermint tea after just day 1. I hate chamomile tea (which is also acceptable) and I also hate Rooibus tea (acceptable) - but have got some in, due to sheer desperation     

I think coffee is supposed to be better tolerated than tea, so my hope is that I can eventually supplement my way out of this and tolerate coffee and cheese. And if I have to take DAO every day and pay £1200 a year to do that and eat normally, then I guess I will....

Sorry, probably catastrophising and looking at the endless days of peppermint tea that lie ahead.