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[Scampidoodle]

I know when I saw a functional medicine doctor they said MCAS and histamine Is always gut related. So I did loads of probiotics but actually it isn’t for me. Mine is my issue with detoxing estrogen and another genetic issue with methylation causing my histamine to increase. I initially went on estrogen which tipped me over a few years ago! I did come back from that though. You will too. Might be worth having an appt with someone in the know so you know what you’re dealing with.

In my case I got better, took my eye off the ball, ate rubbish, drank rubbish and got a couple of viruses and kaboom. I’m back there again. I have a solid plan for when I rebalance I just need to get there first x

[Marchlove]

Hi Sampidoddle

Yes I think a lot of us are in the same situation with genetic snp’s that are causing us these issues.

I had my genes tested a few years ago and know I have issues with
MTHFR
COMT
MAOA
And PEMT

Not actually DAO though!

If anyone is interested in reading about this, the book Dirty Genes written by Dr Ben Lynch is a good book to explain all about it.

It’s not everyone’s ‘cup of tea’ going into things in such depth. But for those of us who are interested it does answer some questions and give us a better steer on what supplements might be useful for our individual needs. X

[Scampidoodle]

Hey Marchlove - I also have really poor COMT and MTFHR. I too have no problem with either of the enzymes that often cause histamine issues, like DAO but the rest is enough to cause an imbalance isn’t it.

So Marchlove, have you been in a hole before with these issues but they’ve improved and if so what did you do?

I ordered some dao (seeking health) today to use in this current flare as I keep getting low and brain fog, sometimes jittery after eating x

[Marchlove]

Yes I’ve been in this hole before!

I improved but not enough to tolerate hrt in the way that I felt I should.

A lot of my symptoms subsided via supplements but or course throwing hrt into the muddle, then getting covid has thrown everything off balance.

I sincerely believe though that I will find that equilibrium with low estrogen supplementation and progesterone at the right ratio to that.  Of course Dhea and testosterone also has its role to play.

I have to use supplements to my individual advantage, which means research and commitment.

For instance, one example is that people with comt snp’s can only tolerate a couple of types of vitamin B12 as they have problems with methylated B vitamins.
It took me 3 years to figure this out!

I’m wondering if we should start a new thread as we’ve sort of hijacked this one?

X

[Scampidoodle]

Yes probably 

[Gilla999]

No worries ladies, I'm happily reading all of your messages! It does all seem to be related, it sounds like we're all saying a similar thing. The rest of the forum might prefer it if we keep the topic to one thread so don't move on my account  I've changed the title of the thread in case it helps.

Marchlove I'm very interested in the genetic testing... I'm a bit of a sucker for testing in general! I've read a bit about it, anyone you'd recommend doing it through?

After the few experiments I've done with the increasing Estrogen causing a flare up, right now I do lean towards that being the key for me (not necessarily lowering it being the answer, but I feel the balance is out of whack somehow). But who knows, as Sweettooth says it could actually be covid related or aggravated as all of my symptoms started the day after my 3rd booster back in December. Interesting to hear there are a few of us in potentially the same boat though!

Joziel my current thinking would be to take 100mg Utro vaginally as normal for 12 days and then switch to 25mg of the BHRT lozenge for the rest of the cycle. Reason being that my symptoms seem to flare not only at the ovulation surge but also during the 1st week of my cycle, which is when I'm on my 4 sprays of Lenzetto but my Prog has dropped off a cliff after stopping the Utro. But as Crispy says it is possible that because I've been using Utro earlier in my cycle that the combination of that and then the 25mg prevents ovulation for me, which isn't really my intention. It's a bit of an experiment. My other option would just be to trial moving to continuous HRT using the Utro... I'm just a bit nervous about anything that prevents ovulation as I had a bad experience pre starting HRT where I tried the BCP and it sent my hormones bananas, i was horribly symptomatic with night sweats and insomnia etc. Still thinking it all over!

[Marchlove]

Hi Gilla

Thank you for feeling that you would like your thread to continue in this off topic way.

In the first instance Gilla, I would recommend buying the book by Dr Lynch. I say this because with some of this information already in your mind it will enable you to better interpret any gene testing you have done.

It is not just a question of your genes, that give you a tendency for diverse and adverse health issues, but also environmental, lifestyle, and dare I say it, political influences that impact  our health.

Sleep well everyone xxxxx

[Scampidoodle]

Yes Thankyou Gilla. I’m sure we can be a big support to each other.

My gene testing was done by Lifecode gx but if you do see a functional medicine doctor they probably have their own people they use.

I might get that book Marchlove. I’m heartened you got better with supplements. Do you mind me asking which ones you felt were key? Did you ever take antihistamines? X

[Marchlove]

Hi Scampi

I did use a antihistamine, Ketotifen, which is a Mast Cell stabiliser.

I got better to the extent I was no longer bedridden by Lymes disease, but not well in the sense that I still had many symptoms which I eventually realised were menopause related!

I think one of the mistakes I made in the past was ignoring my gut health and thinking that just by taking the right B vitamins, magnesium, vitamin D etc everything would be fine. Even taking low histamine probiotics didn’t make much difference.

I’m currently about a month into using zinc-l-Carnosine to repair my leaky gut. I’ll find some links to share with you today. So far my Gerd has reduced quite a lot (after an initial flare), but apparently it takes quite a few months to work completely.

After starting HRT, it took me awhile to realise that my genes were expressing themselves in a different way but that’s still work in progress for me trying to work everything out.

Yes, do get the book and we can compare notes on the mthfr and comt gene. X

[Scampidoodle]

Interesting what you say about an initial flare, I’m finding now My mast cells are in an active state again, I’m reacting to everything. Food, meds. Not the meds I have been taking for a while but anything new.

I had a new Mirena on the 29th and reacting to that. I took fexofenadine last night and although it stopped my palpitations this morning (hurray and something for you Joziel) my skin is burning and im boiling today.

Have you experienced initial flares with meds that your body has then adjusted to?

[Marchlove]

I don’t take any meds apart from hrt.
By April I was beginning to feel that my body was adjusting to it, but after I got covid in May everything went haywire.

The main issue I had from covid was that my cortisol dropped very very low. I tested about 3 weeks post covid. It was then I realised that I desperately needed the progesterone (even though I’m intolerant to it in large doses) to raise my cortisol levels.

So I had stopped the hrt for a few weeks (in hindsight a mistake) after I got covid and I am now in the process of acclimatising to it again.

My intolerance to progesterone I believe is due to my MAOA gene mutation (famously called the warrior gene!). Progesterone activates this pathway and in me causes irritability. X

[Scampidoodle]

Ah sorry I meant as you said you had an initial flare with the Gerd med.

I always think low and slow is the key for anyone taking meds with histamine or mast cell issues.

How did you find the ketotifen and how long did you take that for? X

[Marchlove]

Hi

This explains the MAO connection with progesterone (see the response from Ellen Grant)

https://www.bmj.com/content/364/bmj.l335

Yes the Gerd supplement does give an initial flare and then slowly settles down.

Ketotifen I was on it for a couple of years and worked well in a lot of respects in that I didn’t overreact to everything such as chemical fumes, but it ended up making me irritable. I later learnt that body builders use it (off license) as it increases testosterone! X

[Scampidoodle]

Oh I didn’t realise this! I tried it for a couple of months last year. It did cut down on inflammation but it provoked my heat intolerance so eventually stopped it. 

[joziel]

Well, it was another bad night here    Now Day 5 of a strict low histamine diet. I can't actually tell any difference. Maybe I'm coughing a bit less after eating and my nose is running less. Although that could just be the heat at the moment - that does tend to dry everything up anyways! But there's definitely no change at night time.

Last night I just woke pretty much every hour from about 3.30am onwards. And then dozed. And woke. And dozed. Through the night. And my hands often felt a little throbby but not badly. So the throbs weren't too bad last night but the insomnia was. Somehow I seem to be getting some sleep like this because I'm not that tired during the day. But I feel like I'm not getting the really deep satisfying sleep. I'm just getting REM sleep and dreaming. During the day I mostly feel fine although occasionally a bit throbby - not as bad as at night - but I also feel pumped and energised and ON IT. Which isn't a bad way to feel, it is just a bit exhausting feeling like that all day really....

I wonder if I should try the fexofenadine before bed, not on a regular basis but as a sort of diagnosis. If it helps then it confirms this is histamine/mast cell territory?? Seeing my low histamine diet isn't really helping me rule that in or out. How does taking meds before bed fit with taking utrogestan?? I don't take anything for 2 hours before bed when I take my utrogestan at the mo. I guess I could take it 2 hours before the utrogestan....?

I've ordered the book Dirty Genes, thanks for that tip!

After this I have to figure out if I should 1) reduce estrogen to 50mcg patch again or 2) try the progesterone switch to see if taking 200mg of utrogestan every night and stopping desogestrel helps. I think I should probably reduce the estrogen first.

Oh and on the subject of ovulation, I can say something to that because with endo, I try hard to stop ovulation happening. (Loads of estrogen is released into the body cavity at ovulation, from the maturing follicle.) When I was on 100mg of utrogestan for progesterone (and no desogestrel) it wasn't enough to suppress my ovaries or turn off ovulation. When I restarted the desogestrel, it did that. I don't know yet if 200mg continuous would stop ovulation because that's the thing I haven't tried yet. As I've been a bit focussed on sorting out the estrogen side of things...!! But 100mg continuously definitely didn't stop it.