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[Sparkle]

Hi all,
I haven’t posted here before but I’m at my wits end and just wondering if anyone has had any success in managing histamine intolerance alongside hrt.

I’m 52 now, and my 3 day migraines started in my early forties which I now realize was the start of my peri-menopause. I started on oestrogel & ultrogestan age 48, gradually increased to three pumps to control flushes & increasing night sweats and it all ended horribly last September with a week of sickness, diarrhea, a week long headache, involuntary jerks, palpitations etc. I stumbled across histamine overload/ intolerance and thought it could be this.

I’ve since followed a low histamine diet, reduced my oestrogel down to half a pump & that has helped a lot but i only have to try to have a meal out with friends once in a while & I’m back to square one again.

I’ve had a really rough 4 years, lost my husband to a sudden cardiac arrest and then all this and I’m so fed up with it all and trying to work and keep things going at the same time. I know it’s really expensive and that’s what’s been holding me back, but I’m considering trying to book in with Dr Tina Peers or her team, to see if there is a way through this as she’s experienced in HI.

Just wondered if anyone could share their experiences with histamine intolerance & hrt please & anything that has worked 🙏🏻

[gailhodg]

Hi Sparkle,
I think I also have histamine intolerance.  I'm 52 and have been on Evorel 50 and cyclical utrogestan for around 6 months.  Initially I felt SO much better but then I began having horrible headaches, brain fog and just feeling generally crap.  I turned to HRT because just over a year ago I suddenly developed insomnia  I searched and searched for the cause and came up with histamine as I also had a constant runny nose, itching and other symptoms.  My oestrogen level was over 1000 pmol/l ! (this is before HRT)  To cut a long story short and not bore you with all the details I have found (only very recently) That I feel so much better when taking the Utrogestan so I am experimenting now with no oestrogen and 1 utrogestan per day - 25/30 days - I have cleared this with my Dr.  I am also starting testosterone next week as progesterone and testosterone are Mast Cell calmers - they help to stop the histamine release.  Flax seed is excellent for clearing excess oestrogen from your system.  Quercitin and vitamin C are also very good supplements to calm mast cells. Absolute life savers are Zeolite and activated charcoal - they are binders and soak up all the nasty stuff that is released from the mast cells, might help you when you eat out...  You can buy them both on Amazon, I take them before bed and whenever I feel crap. 
I am waiting to see Tina Peers also - her wait list is VERY long!  Unfortunately, Dr's just aren't educated on this subject and it is an absolute minefield 

[Madge79]

I’m so sorry you have been through so much.

Have you had your estrogen levels checked? I was going through something very similar and despite being on 4 pumps of estrogel my Estradiol levels were actual horrifically low at 59!!!!

It would appear that some was going in (as I felt even worse when reducing the dose) but I barely absorb through the skin.

I assumed it was histamine intolerance but in reality it was just ridiculously low estrogen causing all the symptoms. My worst symptoms were (and still are) migraines (lasting a week plus at times), fatigue, all over body pump and severe joint pain and IBS type gut stuff and itchy skin.

I’m now seeing a private dr and she is going to be referring me for the implant if things don’t improve. I’ve found lenzetto spray absorbs marginally better than the gel and way more conviennent.

[Sparkle]

Thanks Gailhogd, that’s really interesting.
I’m currently taking 1 ultrogestan per night but hadn’t thought of testosterone, will contact gp to see if it’s an option.

I tried to manage without any oestrogen for a few weeks but I started having hot flashes every couple of hours through the day and as many night sweats  at night so I was absolutely exhausted after a couple of weeks and was struggling to function at work. I tried just using ultrogestan for a couple of weeks but it didn’t seem to help with the hot sweats on its own.

Thanks for all the info, I’m off to look into flax seeds, zeolite & activated charcoal

[Scampidoodle]

I have histamine and mast cell issues and have been under dr peers for a while. Mine is hormone induced and I have naturally higher oestrogen and lower progesterone. When my oestrogen is lower (which I’ve experimented with by taking dim, sulphoraphane etc) I have zero histamine issues. But I then get menopausal symptoms! I’m not on half an Estradot patch (yes 12.5mcg!) and it helps even at that dose. I have the Mirena but have been advised I may need utrogestan on top for the histamine issues.

As one poster said, some people feel better on just progesterone. But if you need oestrogen often a smaller dose is best with a good dose of progesterone. Progesterne is a natural mast cell stabiliser.

Dr Peers will generally advise anti histamines twice a day, both H1 and H2 plus a mast cell stabiliser like ketotifen if needed. Corinne Fletcher is v good too and specialises and easier getting an appt to be honest x

[Scampidoodle]

And just to add to what someone else said, the symptoms of histamine issues are v similar to those of low oestrogen. So best to check your levels. Some women take more and more oestrogen thinking it’s low Oestrogen and in fact makes them much worse.

If you look up the symptoms they’re v. Varied not just rash, runny nose etc. I get none of those.

[Sparkle]

Thanks Madge79 & Scampidoodle for your replies, I really appreciate it.

I haven’t had my estrogen levels checked but I have been experimenting with dose since I’ve had this histamine issue, because I started getting constant headaches. I’m now on only half a pump of oestrogel per day, if I try to do 3 quarters of a pump then I get a headache or migraine within a couple of hours. So I think that’s the limit that my body will accept. Luckily at the moment I’m just getting a couple of hot flashes per day & 1 hot sweat at night. (Without the half pump of oestrogel I get a lot more)

I don’t recognize myself anymore. Everything sets off really bad headaches or a migraine - perfumes, scented air in shops, candles, medication, washing powder, cold air, if I go out in a slight breeze or in the sun my eyes and nose are constantly watering. I’m struggling to do anything because since going through the menopause I’ve become over sensitive to everything.  I’m sure my family & friends must think I’m a complete loon.

Maybe I should see a functional doctor to see if everything in my body is working as it should be or needs some extra support.

[CeCe]

Hi Sparkle,

I have histamine issues. Mine has been managed by the doctors at Newson Health. They stopped all HRT for a while, then started me on testosterone only for a couple of months to build me up.  Then they added in continuous utrogestan for a month and finally half a 25mg patch. So far so good 🤞🏼🤞🏼. One of the first things they did say was oestrogel is an absolute no no, (something to do with alcohol content) so maybe you could try a patch.

CeCe

[Sparkle]

Thanks Cece, that’s very interesting

Would you mind sharing which doctor at Newson please?
Did they test your blood levels first.

Do you have to follow a low histamine diet too?

I’m sorry, so many questions, were headaches & migraines part of your histamine overload/intolerance issues. (I’m a bit wary of changing to a patch in case I get a huge migraine but what you’re saying about the alcohol makes sense)

[Scampidoodle]

Hi Sparkle,

I have histamine issues. Mine has been managed by the doctors at Newson Health. They stopped all HRT for a while, then started me on testosterone only for a couple of months to build me up.  Then they added in continuous utrogestan for a month and finally half a 25mg patch. So far so good 🤞🏼🤞🏼. One of the first things they did say was oestrogel is an absolute no no, (something to do with alcohol content) so maybe you could try a patch.

CeCe

Really interesting cece. I’ve kind of gone the other way in that I’ve started 12.5mg patch and then adding in continuous utrogestan. No testosterone as my tests said I convert testosterone to oestrogen a lot so I didn’t want more oestrogen really. Trying to find a balance but good to know this is the route you went down. Do you still suffer from the histamine on that regime and do you take anything else for it?

[CeCe]

Hello again,

Migraines were the worst for me. Absolutely unbearable. Moving to patches made a massive difference. I’ve not had a migraine since initially stopping HRT and then starting the regime I’m now on. I’ve not needed painkillers at all for about 9 months. Whilst getting used to the gradual introduction to HRT again, I took a daily antihistamine which helped enormously with any side effects. I couldn’t tolerate utrogestan before but this time I’ve had no side effects at all. I’m not on a histamine diet anymore either, although I’m still constantly wary of my diet and worry about it.

I didn’t have any blood tests initially. I did have one for testosterone levels after 3 months. Newson said there was no point paying for blood tests as my symptoms told them all they needed to know. They also said I was really sensitive to hormones (hence the migraines) which is why they have taken a long slow approach to my HRT.

So far it’s been amazing. I was sceptical but I’ve stuck it out.

I hope you find your answer to histamines too. I had given up but my husband made me an appointment at Newsons and they just understood histamines.

Good luck

[Scampidoodle]

Thanks Cece, really interesting. When you say you had testosterone for a couple of months only to build you up, what’s the thinking behind this? To help the mast cells?

Do you still take an antihistamine? I’m on A bundle of them but feel if I can get the hormones right I’d likely be able to wean off some x

[Sparkle]

That sounds great Cece, I totally get how debilitating migraines are and I’m really pleased that you seem to have found a way of managing the hrt without setting them off again.

Thanks for the info, I’m going to contact my gp this week to see if I can change to a low dose patch and then if I can stabalise on those maybe My next move should be to contact Newson health regarding the testosterone.

Are you able to share the doctor/ practice that you use please, looking online they’ve got several practices now as well as the Stratford upon Avon branch.