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[Tora]

Really sorry to read this Gilla, you’ve got enough going on without this getting worse. I hope it eases soon.

[Gilla999]

Just thought I'd give an update to this thread (and thank you for your kind wishes Tora).

I am now more and more sure that the Urticaria and intensely itchy eyes (it feels like Urticaria IN your eyes and is accompanied by overwhelming fatigue) are connected to my hormones, and it's appearing that it might connected to the balance between E & P. I did a couple of experiments - the first I've already talked about with switching to the patch which involved an increase in E, the second which involved adding an extra spray of my Lenzetto (now I'm back on it) and both times it caused a flare up in my Urticaria. Separately to this a massive flare up also coincided with my pre ovulation Estrogen surge.

The confusing thing for me is that the periodic eye symptoms (which are totally part of the same thing and equally as unbearable as the Urticaria and I mostly experience during the first week of every cycle) were present even when my Estrogen dropped to 300 back in December/Jan, which for me is a very low level. They were also still present when I managed to reduce my Lenzetto to 2.5 or 3 sprays a few months ago. The only possible thing I am left to think of is that while I need a certain level of E to function, it's possible my Progesterone level isn't high enough (especially at certain points in my cycle) to balance it out and it's causing this excess of Estrogen and histamine. I know from tests in 2018 prior to Peri that BOTH my Estrogen and Progesterone were over the top of the range naturally throughout my cycle, and the last time I tested in May my Prog was just under half of the midway range (day 21).

I tried one day of adding the extra Prog on the first day of Utrogestan but because I was so highly symptomatic with the fatigue and everything else I didn't feel I could continue - I feel like I need to be relatively stable to be able to assess what is side effects from what. The last two days (day 16 and 17 of my cycle) have been a bit better so I may try again adding the extra Prog in tonight. I'm now also thinking of being brave and trialling (not this month) taking some of the BHRT Progesterone throughout my cycle, so as to better balance E & P but I'm nervous about potentially preventing ovulation by doing so, as when this happened when I trialled the BCP before HRT it caused me all sorts of problems and symptoms, my body was very unhappy. Crispy have you tried taking Prog throughout at any point?

Sorry for the lengthy update - I just feel I can't be the only woman who has or will experience this and I'm hoping by sharing my findings it might help someone else! I've also been doing the low histamine diet (except for 3 cups of tea a day) and no gluten or dairy, but it hasn't made any noticeable difference yet.

[Gilla999]

Hi Joziel - I do appreciate that diet can certainly help, but I haven't had histamine problems my entire life eating a normal diet until entering Perimenopause when my hormones went berserk, which is why for me it makes sense to focus on getting the right balance on those (particularly as I have other non histamine symptoms of too much E vs P).

I should get my stool test results back from Healthpath tomorrow which test for leaky gut among lots of other things, so will be interesting to see what that says!

Good luck with the diet, hope it's going well! Keep us posted. I agree it is a minefield with labels, especially when I'm also doing gluten and dairy free.

[CrispyChick]

Gilla. Yes. I am currently on continuous prog. I am a little off piste from my clinic recommendations, but they did say I could take it continuously.

The current dose I am on  - 40mg, has not prevented ovulation or a bleed.

My clinic said if it lengthened my period to say 50 days, I was taking too much.

Now, obviously I'm on a much lower dose than you are on with the utro. It's impossible to say if it will hinder your ovulation.

As you know, I've been through many a symptom recently. All since upping my dose. Some of those symptoms were definitely histamine related I feel... But it did calm.

My approach is all about balancing E and P. There is an omni calculator that tells you your ratio. Mine was 12. It should be at least 100.

So yes. Despite our very different symptoms and totally different approches, it's the balance we are both clearly thinking is key.

I think the overall consensus is that breaks should be taken from Prog. However, when trying to rebalance from estrogen dominance, there are a lot of woman take it continuously for a, few months.

Are you working with a clinic??? Where did you source the bhrt prog???

X

[Pippa52]

Gilla I just wanted to say how sorry I am to read all the problems you are having my heart goes out to you it really does . I so hope you can get relief soon especially now you have levelled out on your Lenzetto dosage. Just to let you know also as of yesterday I am back on Lenzetto too. The patches were making me progressively more and more ill and I just hit a wall yesterday and couldn’t hack it anymore. On top of that I started reacting really badly to the glue on the patches and have great red itchy weals all over where they were. . I have a blood test tomorrow and a consult over the telephone with the meno consultant the next day so will be interesting to see what she says. I’m on two sprays of Lenzetto  at the moment feeling pretty low rent  today practically no sleep last night but not quite as bad as yesterday on the patches. Hang on in there I’m sure there will be an answer for you soon. Sending love and empathy x

[Gilla999]

Crispy that is so reassuring to hear, because my intention would be to start with 25mg of the BHRT continuously, so great to hear that 40mg isn't preventing you ovulating (though I realise we're all different... but still, it's a chance). I'm getting it through Dr Susie Rockwell who is a GP trained by the Marian Gluck clinic. I could book an appointment with her but it would be weeks I'd imagine, and also money!!

Yes very aware of the ratio calculator - mine is 58, though that's during the luteal phase - there aren't ratio targets given for other times as far as I'm aware. Gosh how on earth can yours be 12, is your E very high or your P very low? Or vice versa? (I get mixed up!)

Pippa thank you for your lovely words - I have just seen your PM so will respond there xx

[joziel]

Gilla, can you say a bit more about how you are hoping the BHRT will help where regular HRT doesn't? Is it because you can adjust the level of estrogen and progesterone more?

It is interesting there are so many of us struggling with this. I previously did not REALLY have a big issue with histamine. I had a watery eye and nose, and a bit of a wet cough after eating. That was really it. I had those symptoms for years and just thought they were part of getting older or maybe a slight allergy and didn't worry more about them. When I got peri-menopause symptoms, I then thought maybe they were caused by low estrogen. But they haven't gone away with HRT.

But anyway, that's the only reason I think there was anything lurking previously. As well has a history of having endo, which can be associated with histamine intolerance.

I'm currently on 100mg of utrogestan and the desogestrel POP - and I'm supposed to be attempting to switch this to 200mg of utrogestan and stopping the POP. And seeing whether that will ensure the endo stays away. I guess it will be interesting to see if that extra progesterone has any impact on these histamine symptoms.... (I don't know if desogestrel does, since it is synthetic?? Is it only body identical progesterone which works as an anti-histamine?)

[joziel]

PS I just found this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3377947/

"Female sex hormones have long been suspected to have an effect on mast cell (MC) behavior. This assumption is based on the expression of hormone receptors in MCs as well as on the fact that many MC-related pathophysiological alterations have a different prevalence in females than in males. Further, serum IgE levels are much higher in allergic female mice compared to male mice. Ovariectomized rats developed less airway inflammation compared to sham controls. Following estrogen replacement ovariectomized rats re-established airway inflammation levels’ found in intact females. In humans, a much higher asthma prevalence was found in women at reproductive age as compared to men. Serum levels of estradiol and progesterone have been directly correlated with the clinical and functional features of asthma. Around 30–40% of women who have asthma experienced worsening of their symptoms during the perimenstrual phase, the so-called perimenstrual asthma. Postmenopausal women receiving hormone replacement therapy have an increased risk of new onset of asthma. Beside, estrus cycle dependent changes on female sex hormones are related to changes on MC number in mouse uterine tissue and estradiol and progesterone were shown to induce uterine MC maturation and degranulation."

And here's one about progesterone: https://www.researchgate.net/publication/6634341_Progesterone_Inhibits_Mast_Cell_Secretion

And this is a good summary of how estrogen and progesterone interact - https://mthfrsupport.com.au/2016/09/her-stamine-the-link-between-histamine-and-estrogen/

Since estrogen downregulates DAO, it might be a good idea to have a DAO supplement at least?? They are expensive, but the DAOFoods one is cheaper than Hista Block. And quercetin is a natural mast cell stabiliser, so that is probably an important one to take as well.

I find it truly truly bizarre that there are so many women suffering these reactions to estrogen (all over social media and on forums like this) and doctors have *nothing* to offer in response other than reducing or even stopping estrogen.

[Gilla999]

Yes exactly Joziel - purely because I can control the amount with BHRT. I take 100mg Utrogestan vaginally for 12 days a month so I know I'm "covered" in terms of my womb, and I have tried increasing it to 200mg but it just zombiefies me the next day. With BHRT I can add in just a little bit more (if Utrogestan came in smaller quantities I'd happily use that instead!).

Good question about synthetic prog and whether it down regulates in the same way body identical does. Scampi who may well come along to comment  had very good success the first time she had a Mirena coil fitted with her histamine issues and that is synthetic, but I'm not sure what the official line is.

Thanks very much for the links, will take a look now! And yes I was actually looking for DAO supplements this week but everything I pulled up seemed to be a bit dubious / unofficial. I don't suppose anyone has any recommendations of "real" DAO supplements? I'll have a look at the DAOFoods one. I  actually took Quercetin after Covid caused a massive flare up of my symptoms and have some left in the cupboard so will start taking that again too 

How are you getting on with the diet Joziel?

[Scampidoodle]

Hi all,

Crispy - hi it’s been a while! I hope you’re ok. interested in your addition of progesterone at 40mg. What form do you take that in and where do you get it from? Also are you also on oestrogen hrt? How are you finding it all have you found a balance?

I truly hope you get a break soon from this all Gilla. You deserve it! As for histamine foods, the diet is v restrictive and some people find it really helps their symptoms really quickly and others don’t. It’s such a trial and error thing. Just avoiding the highest histamine foods is enough for some.
Quercetin is good. And natural. You can take it morning and night or just before food. It’s a natural mast cell stabiliser and antihistamine. Also high dose slow release vitamin C twice a day.

Something my consultant recommended was Toxaprevent? It’s supposed to pull histamine out the gut. I think I got some off Amazon.

Joziel - I did get relief from the Mirena. Doesn’t seem to prevent mast cells from setting off but aids in settling them somehow. Maybe not by directly settling them but by balancing out the estrogen (as my problem is I can’t detox estrogen so I have high histamine and therefore when that gets too high the mast cells activate and it takes a while to get them to calm)

X

[Marchlove]

This is a very good article about Mast Cell Activation and histamines.

https://me-pedia.org/wiki/Mast_cell_activation_syndrome

Interesting list of symptoms in the article! Sounds like peri!

I have taken DAO in the past, I used to get the one from Seeking Health. I very rarely use it now but just avoid the obvious triggers rather than sticking rigidly to a anti histamine diet. I am on a very very low dose of estrogen, so I suppose that helps.

Hope you all have a good night xx

[Scampidoodle]

That’s why I thought I was peri as they are the same symptoms aren’t they!
I might try some of those seeking health supplements to help me through this blip. Thankyou. They as expensive though aren’t they so not a long term option x

[Scampidoodle]

What type and dose of estrogen are you on Marchlove? This is what concerned me about when I need some E whether i would tolerate and my consultant said I may only be able to take a very low dose when my own E has gotten quite low itself x

[Marchlove]

Hi Scampi

I’m on compounded Biest 0.25 estradiol and 1.0 estriol. So pretty low.

I used to save the DAO for main meals or when eating out, when there is likely to be more triggers.

Of course histamine reactions can come from many sources, not just food. So I chucked out all my soaps, shampoo, makeup etc.  Not much we can do about pollen though!

My naturopath told me that a good way to look at histamine is like a bucket. The body can cope with it being half full, even 3/4 full, but once it overflows we get the big problems.

I think earlier someone mentioned about progesterone levels throughout the cycle. In this article if you scroll down to Table 1, it has the daily levels.
Some other good sections in the article about why some women struggle with the progesterone element of hrt, but I haven’t studied it thoroughly yet.

https://www.sciencedirect.com/science/article/pii/S0091302220300479

X

[joziel]

Hey, So Gilla are you adding in the 40mcg on top of your utrogestan? Or switching totally to BHRT?

I had a rubbish night. One of the worst I’ve had recently. Just awake basically all night. Feeling wired and jittery and feeling my heart beating - not fast but hard. And feeling throbby in my hands and body more than I have recently too.

I am eating almost zero histamine so you’d think that would do something if this is histamine intolerance. But I feel just the same as when I was eating whatever I wanted. Maybe my eye is tearing less and I’m not over producing mucous but those were minor symptoms.

I can only think that because this is caused by estrogen making mast cells release histamine that my gut and what I eat isn’t really doing anything. Presumably mast cell stabilisers would be more effective - so the quercetin might help - and I think there are prescription mast cell stabilisers as well but I don’t want to have to take those, unless it’s short term.

Struggling to see a way out of this now ☹️

Oh by the way with DAO there seem to be two available - there’s the Seeking Health Hista Block but there is also one called DAOFoods which is made in Spain and much cheaper for us in UK. It’s about half the price of the Seeking Health one. I’ve ordered some.

Although maybe I’m just throwing money away. I’ve ordered so many supplements and probiotics and starting to get really down that nothing helps.