Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Gilla999 on June 17, 2022, 07:29:18 AM
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I realise this is a bit unique so no worries if no feedback!
I've been on Lenzetto since April 2021. In Dec 2021 I started suffering with extremely itchy eyes, for which even the strongest prescription antihistamines did nothing. It would last for about 2 weeks and then dissipate. This happened periodically throughout Dec-April, and then straight after Covid in April it got much worse, with the addition of asthma type symptoms. It resolved again briefly after about two weeks, but then at the end of May I started suffering with angioedema (where parts of your face swell up) and for the last two weeks I've had this plus severe urticaria (hives). I'm covered head to toe in angry, red, itchy weals and I've been signed off work for at least 3 weeks. The steroids I've been prescribed only work for a few hours.
I had allergy blood tests done in April (food and typical external allergens) that showed up nothing and I've got another set of skin prick ones next Friday. I've been told by my specialist that when an allergy is this severe it is almost always either a food allergy or drug allergy - something internal.
I'm super confused as I haven't changed either my medication or my diet since it all started in December, so whatever it is has suddenly developed. In terms of drugs I've been long term on two antidepressants for years, and aside from this the only other thing it could be is my Lenzetto. I was just curious to see if anyone had ever had an allergic reaction to one form of HRT and been fine with another? I suspect I'll need to start eliminating things out if the skin prick tests show up nothing, and the thought of going through the rigmarole of changing up my HRT is a bit daunting as I finally feel stable on my dose of 4 sprays.
If anyone has any tips or recommendations of where to potentially start with switching from Lenzetto and equivalent doses, I'd really love to hear of them! Or feedback on any similar allergy things!
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I don’t have any experience but just wanted to express my sympathy, it sounds absolutely awful. I hope you resolve this soon.
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Thanks ATB, really appreciate the good wishes - I look and feel a frightening state! Hopefully it isn't connected to the HRT because after finally feeling I am stable on a dose it'll be a bit of a drama to have to change to another product (I'm not even considering the possibility that I could be allergic to HRT in general as that's just too frightening!!)
Just seen via a search that I'm not the only one who seems to have suffered from urticaria and a possible connection to HRT or hormones, but doesn't sound like there were any resolutions :(
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I think there is a leaflet on histamine intolerance on Newson Health website. Certain foods are known culprits, might be worth taking a look. Do antihistamines help at all?
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Oh I do wonder… I woke up the other day, I have covid right now, and had what sort of looked like razor burn all over my pubic area and top of my legs. It was quite widespread. The first time I got covid I got this strange almost like eczema but bumpy and on my toes rash thing. It lasted ages. I was looking it up and it’s quite common with covid. You obviously had some sort of itchy issue before, but I wonder if the hives and things are covid related? It worsened by it? It’s be horrid if it was the HRT.
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Gnatty even steroids aren't working, let alone antihistamines :(
ATB I have definitely wondered that myself, and adding to the confusion the original itchy eyes problem started the day after my Covid booster in December - which could totally just be a coincidence, but you just don't know do you. I know that Covid seemed to turn the volume of it all up to 100 and I haven't felt right since (I don't have any "long covid" symptoms though, just the horrendous autoimmune / histamine type stuff).
It just feels really odd to have suddenly developed such a severe allergy to something (which they tell me will be food or drug, not external) and yet I haven't changed anything. I know they do say allergies can develop at any time, I suppose it just feels odd and does lend weight to the Covid theory! I can't share pics here to show you the rash but it is frightening, my body looks like it's being poisoned. (Sorry - bit 'drama queen'!)
Really appreciate the replies - feeling a bit sorry for myself! You know when you get over one hurdle (the hormones) and then get hit by another!
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Gilla!!! I just came on to search for your allergy post, and saw this.
So... How did it go with the utrogestan phase??? Maybe you updated on the other thread, I'll go look.
You're clearly in a bad way. So awful.
The only thing I can add, avd the reason I came looking for you today, is my nose pressure issue us back. The connection - increasing my progesterone cream. It happened on my last trial too. It also happens on the pill. It is meant to be estrogen that increases histamine... Possibly my prog is still making my estrogen receptors pre sensitive - but its odd.
Not much use to you - but I'm now 100% sure mine is hormonal (aster my nose op too).
I do think you'll probably need to try elimination. I feel for you.
I am very allergic but the only time I've had proper hives was due to decaying blue flowers in a room - sprayed blue I think. Was weird. I wasn't anywhere near them.
Hope you get some answers from the prick test xx
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Diamine Oxidase (DAO)
I'm just away to research this - as a, supplement it may help with histamine issues. Not researched yet. But thought I'd share.
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Interesting about the Progesterone Crispy - I also recall you talking about the nose symptoms when you were on the Prog dominant contraceptive pill. I'm pretty sure mine isn't Progsterone related though - I had initially thought there might be connection with the timing in my cycle but there isn't, at least not now. The Utrogestan phase made no difference either good or bad. I really hope the specialist next Friday can shed some light on it - I still can't help feeling it's all connected to my hormones and linked in some way, possibly also with the extreme weight gain and the chronic constipation that all arrived around the same time too, but who knows. Feeling a bit low with it all - would just be nice to be back to being the me I was in 2018 and for the 37 years before that!
Thanks for the kind messages ladies, really appreciated it today x
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Ah, that's a shame gill. I thought the utrogestan phase may have been enlightening. Obviously not.
Suppose, progesterone or not, it could still be the additional estrogen. I really hope not. But whatever it is you certainly need it identifying.
I can totally understand you feeling so fed up. I have a lot of those days. I just hold on to the fact that one day this might all lift.
I'm sure you'll get to the bottom of this xx
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I know I keep repeating myself, but thanks again for the kind words Crispy - it really does help :)
I hold on to that thought too - there are times when it all feels a bit overwhelming but most of the time I try to focus on just dealing with one aspect of it at a time and hoping there will be a day not too far away when I don't have to think about my health every day! It feels like early menopause for me created a domino kind of effect. It's at least reassuring to know that other women out there are also experiencing it (I look at my other 40 something old friends who are living life to the fullest and feel so envious!) xx
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Any improvement gilla????
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None :(. Finally got to see the allergy specialist today and he was very good - he said something this severe will be an auto immune condition and not an allergy to a food or substance. So it's a case of trying two types of heavy dose antihistamines and if it hasn't cleared up in another 2 weeks it's considered chronic and not acute and then the next line of treatment is (v expensive) immuno suppressant injections :-\
He said the cause will be either my thyroid or the covid, possibly combined with the fluctuating levels of hormones in Peri which makes women more susceptible at this age. He's ordered some more blood tests (thyroid and histamine).
I'm still thinking of switching my Lenzetto to something else just in case, but not until the urticaria is more under control - it's still really severe at the moment.
Thank you for checking in Crispy I really appreciate it. Still signed off work and living a bit of a shadow life at the moment :'( X
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Awww man. That's awful :( poor you. It just all keeps coming at us...
Still, at least you've now seen the expert and made some progress. Hope the heavy duties help.
Immunotherapy I thought was offered on the nhs in eng. Maybe something to check. I was recommended for it a few years ago as I have endless allergies - but I was declined by NHS Newcastle as I'm scottish. Scot don't off it. Charming.
Hmmm interesting they recognise hormones can be the cause of allergic turmoil. Unfortunately for me, my nose issue has returned. Gutted. But I'm 99% sure it's hormonal. For example today I have bad hay-fever... But not got my nose prob. Plus I've identified differerent doses of prog are triggering it. Still none the wiser as to how to solve it.
So, yip... If u can stomach it, I'd defo try eliminating the lenzetto spray. At least then you'll know. 😬 X
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Interesting on the Prog and your nose prob Crispy... do you think it's sinus pressure or a referred headache or something else? Is it when you increase your Progesterone?
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Yes, definitely connected as I increase. But also got on the pill. Both mini and combined I recall.
I think it's dry sinuses. I'm pumping saline solution up there...
Dryness would suggest low estrogen. Mind boggling.
How are you getting on with hard core antihistamines?
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Interesting! Is it the opposite of what we’ve all thought and that it’s actually progesterone that causes histamine reactions!
Off to research…. X
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Looks like can be
https://www.verywellhealth.com/hormone-allergy-82663
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The allergy specialist tested me for that Progesterone allergy but we knew it would be negative - he did say that particular allergy is very rare. But what I think is not well understood or taken into account is the knock on effect that our different hormones have on other parts of the body. So for example in Crispy's case it might not be an allergy per se, but something physiological that happens when Progsterone changes that causes her to feel a certain way. Obviously not a doctor's words, but just my feeling - hormones are connected to so much in our body.
Crispy I'm just 'surviving' really. Overnight and mornings I cannot stop the raging urticaria, even with the AHs. But it does seem to abate during the daytime, I'm just still feeling super crap in general, perhaps because of disturbed sleep. I also generally feel mentally quite low at the moment over it all. These continued health problems have been going on for 3 years now, I'm a shadow of the person I used to be and it's getting hard to keep remaining hopeful and positive that things will one day go back to how they were for the rest of my life! But I realise I'm nothing special and lots of women are feeling this way... it's such a cruel twist of fate that we have to deal with this shit during the most stressful time of life in terms of careers and children and getting old etc!
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It is awful Gilla, sending you big hugs from my sofa where I’m also crashed out today :bighug:
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Thank you Marchlove, sending them back to you from my sofa also!! :love:
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Another sofa squatter here. Wondering if I can teach the dog to use running machine as I can’t find the energy to walk her but I’m getting the hard stare!
Sending hugs ladies, this is what sofa’s are for :)
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Awww ladies. I'm not on the sofa today - but wish I had been.
I'm dancing around with prog doses and creating all kinds of havoc. I think your analogy makes sense gilla - not an allergy in itself but the hormonal changes create the issue of dryness, swelling, inflammation, blockage... Whatever it is in my nose. If was better yesterday. Back today. Go figure. I cant mess with dosage any more though. I need to find consistency and see what transpires.
So sorry you're not getting relief. The daytime thing seems weird though... Allergies take it out of you, so your body will be continuously fighting, hence feeling run down. Just going to state the obvious, just in case - bed sheets??? Washing powder??? The night/day thing is odd.
Are you going to brave the lenzetto switch??? I feel for you, I really do... But I think you need to find out.
Totally hear you on how awful if is and how disrupting to life. This is my 5th year of this rubbish and I've not even reached meno yet. I do feel my kids have been cheated. But hey, there's folks worse off like they say :-\
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Tora it really does help to at least know I'm not the only one having a rough time of it - it's rubbish when it feels like the rest of the world is going on out there having a grand old time without you. Sending hugs and hoping that tomorrow is a better day for you.
Crispy I can so empathise with the changing things up - I am terrible for doing that, but have learnt the hard way that it never really helps. I still have to be strict with myself over it though when I'm feeling ropey and you desperately want to just feel normal! What method do you take your Prog BHRT? I tried various types but always felt like the dose wasn't dispensing properly/consistently in both the cream and sublingual drops. The lozenges were the only way I felt I was getting a consistent dose.
Please feel free to state the obvious, I am open to all suggestions!! Funnily enough have actually just bought new bed sheets AND a new washing powder today. All the literature does say that hives is generally worse at night because of temp but I agree it does seem a little strange. And you're right about feeling run down - also it was only 3 days ago that I stopped the steroids and I was on a pretty high dose for some of those 10 days, so logically I know that will also contribute towards me feeling very tired and low.
As for the Lenzetto switch - I'm still toying with it but think I'm going to give it at least a week on the new antihistamine regime before making any more changes. Hard to know if you're going to find the magic answer or just cause even more upheaval!! x
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Absolutely gilla - give it as long as you need before trying the lenzetto swap.
I'd wash the new sheets first. I once had a reaction to unwashed sheets.
Remember my story about the decaying flowers... That only came at night because they were in my bedroom. That's the only time I've had proper hives. Go search that room!! Remove any plants etc from upstairs (assuming u have an upstairs!?) damp dust everywhere.
Anybody spraying anything upstairs??? Perfume, hairspray, deodorant???
Yip. That's me. Mrs Impatient. I upped the dose a little on sat to see if it helped my nose. Not a good day today - so stripping if back.
So, prog has been a roller-coaster in itself. I spent 3 awful months trying to get on my compounded cream. It really antagonised my estrogen. Then switched to troche. Reduced down really low and stuck it out for 3 cycles. Now added onas cream - night and day to my compounded. I think onas is far superior and I absorb a lot better. But obviously it's too early to tell properly.
I don't recall you being on bhrt prog...?! That was with estrogen though, right???
Fiingers crossed for the antihistamines... X
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Gilla, I could be barking up completely the wrong tree here and apologies if so! I recall you were taking mirtazapine at one point and I think you were trying to reduce your dose. Am I right that mirtazapine has an antihistamine effect at certain doses? Just wondering if that's the case and you have been reducing whether that could be playing a part ...
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Gnatty you are 100% correct. I've been slow tapering off Mirtazapine for about two years (I reduce it at 10% every 4 weeks, I take the oral solution). It is possible that the cumulative effect of reducing it has either triggered or contributed to the issue, I have definitely considered that. I just don't know and I can't face increasing it again as it's taken so long to even get to 7.5mg where I am now. The problem is there are so many things it could be... the Mirt, a reaction to covid as it seemed to start after that, too much estrogen, my thyroid, something else... nothing seems to fit exactly.
Crispy what I might do tomorrow is try sleeping in the spare room. I'm willing to try anything!
The allergy specialist was pretty clear that this was am autoimmune problem and not an allergy to something but I don't think anyone ever really knows do they. It seems bizarre that it could just start out of nowhere and be so severe and not a reaction to a specific thing.
Yes I took BHRT prog right at the very beginning on its own before starting HRT proper, that was lozenges. About 6 months ago I then also tried adding in extra prog again, as I felt maybe I wasn't getting enough from 100mg Utro vaginally and yet can't tolerate any more. That was when I tried both a cream and sublingual drops (via a doctor trained with Marian Gluck) but I didn't feel either gave a steady dose, I could tell different amounts where coming out each time.
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Hi ladies,
How are you doing today?
I think you’re right in not changing your Lenzetto yet Gilla. I reduced a week ago and was anxious yesterday and feel similar today. I have got to go into work today but am dreading it.
I hope today is better for you. X
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Morning ladies
Hope we don’t have to do any sofa surfing today!
Gilla, I’ve found this regarding urticaria and Covid 19, also accounts on line of it happening after the vaccine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8470475/
X
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Me again!
I have ongoing issues with my cortisol:Dhea , which I thought I’d got sorted but after getting covid in early May it all went wrong again.
I’ve just remembered that I’d seen something about hives in all my research so I’ve had another quick look and found this.
https://www.degruyter.com/document/doi/10.1515/tjb-2020-0304/html?lang=en
X
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Morning ladies. Marchlove, I was reading my diary last night and I am feeling more and more convinced that the vaccine and then Covid could be the cause of it, possibly exacerbated by reducing my Mirtazapine. I had my booster on Dec 23rd and from Dec 24th onwards felt horrendous (Dec 24th the horrendously itchy eyes started and just generally felt very ill). I missed Christmas Day because of it. It's since then that I haven't felt completely right although it's hard to know how much of that is hormonal (my Estrogen level dipped after the booster and plummeted after Covid itself). I'm not normally one for blaming things on vaccines (and I was fine after the first two jabs) but it does appear as if there might be a correlation.
Interesting on the Vitamin D and DHEA. I had read about the D and have upped my intake considerably in the last few days but I know nothing about DHEA. Are there supplements you can take to support that?
Last night I switched the Fexofenadine for Cetirizine after reading it has better efficacy for Urticaria, and it seems to be a bit better this morning - fingers crossed. It was marvellous to not wake up in a total state for once anyway!
Tora, what HRT do you use and how much did you reduce it by? I have a nightmare reducing my HRT even when it is "too high". It's the reduction in itself that causes me side effects and I have to go super slowly so as not have side effects. That's just me of course, many people don't have that issue! Sending you good vibes x
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Hi Gilla
This is also interesting, the third paragraph from the end mentions worsening of symptoms at night.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170459/
So you’d have to do a cortisol and Dhea saliva test. You’d have to do this yourself as GP’s don’t know anything about it. It’s a very easy test to do but some labs are better than others in reporting.
If your interested let me know and I’ll post some options for you x
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Interesting, thanks for sharing (and I also appreciate another researcher like me... we are so lucky this kind of info is available on the Internet!).
Do Medichecks offer a test? I usually get my tests through there. I think I might wait a week or so though as my cortisol levels will probably still be messed up from taking the steroids.
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Hi Gilla
No you have to wait until you’d been off the steroids awhile. You’d have to research but I think a good few weeks.
No the Medichecks only do the blood one which won’t be any good.
By far the best one would be the Dutch Test, as they also do a middle of the night swab plus you get loads thrown in besides.
If you’re still in peri best to do about day 21 of your cycle.
The next best would be zrt labs which will just be cortisol and Dhea saliva 4 x a day.
X
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Thanks for this Marchlove, much appreciated. I'll give it a little while and then go for the Dutch test, I've been thinking of getting one of those for ages anyway.
I am thinking this morning that I might just be brave and try the switch from Lenzetto to Estradot soon. The Urticaria I am controlling enough with the AHs to now be able to function during the day, and I'm just planning to wait another 2 weeks for the 6 week mark (I've been told I have to) and then go for the injections if it's still there, which I suspect it will be.
Aside from this, I am still suffering from really bad fatigue, headaches and some 3am insomnia always during the first week of my cycle. It always magically disappears around day 10. I can't increase the Lenzetto itself any more from 4 sprays so I'm wondering whether I should just give the patch a try. Very, very nervous about it though, as Lenzetto literally saved my life when I started on it in April 2021. It seemed to work well for me initially for the first 8 months but then not so well in the last 6 as my Estrogen level has dropped further. Crispy I am also thinking about adding in some extra Progsterone via Lozenges to help with the balance, but I wouldn't change both things at once.
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Hi Gilla, good to read that your coping in the day, hopefully that’ll extend to the morning and evening soon and you’ll get normality back.
I take gel and Estradot, I stopped the patch a week ago, last few days have been rough. Spoke to doc this morning who wasn’t impressed with my unplanned decrease so the patch is now back on. I feel normal again! I need to accept I’ll be on HRT forever and change my thinking.
Are you feeling well enough to leave the sofa yet? X
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Can I ask what made you want to take the patch off? I really related to your comment about changing your thinking. I feel as though I'm in a constant battle of worrying that my HRT is too high, which I think for me has a lot to do with me putting on a lot of weight when I started the Pill and then switched to HRT. I also take Mirtazapine so it's been a double whammy, but my constant attempts ag reducing the Lenzetto last year ended up causing me nothing but upheaval and reoccurence of my symptoms. Your reasons may be totally different but I can relate to the sentiment!
Definitely starting to feel better with the urticaria, it's still 'there' but the AHs are controlling it. Such a relief!
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Great news Gilla! Xx :)
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Just wanted to say I re-acted really badly to the first 2 Pfizer jabs in fact I ended up in A&E both times afterwards. The hospital just would not believe it was a re-action to the jab the first time but then I got ill the second time around they were less sceptical and I was advised not to have a booster of either Pfizer or Moderna which I still haven't. I was really poorly for 3 months but have never been right since so Gilla I think you may well have something about your problems may be related to the jabs. xx
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Thank you for sharing Pippa, I do hope you continue to recover x
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Can't remember if I've already said this Pippa but my first two jabs were AZ and I was totally fine. The 3rd was Pfeizer and it's been since the day after I've had trouble. I do know lots of people who had the same and were fine though. But I do believe there is a lot they still don't understand about both the vaccines and Covid. Thanks for sharing your experience Pippa. How are you getting on with your HRT now?
And Marchlove thanks for good wishes ;D even though its still there it's such a relief to be able to have a relatively normal day :)
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I’m a bit late to this convo but I was wondering if you’ve thought about histamine intolerance?
I found this info sheet on it from Newson Health: https://balance-menopause.com/uploads/2021/09/Histamine-Intolerance-1.pdf
I only came across it trying to figure out what the heck is going on with me at night (heart palps, sleep issues). I do also have watery eye and excess mucous, especially after eating. But it seems a bit hardcore to try that diet - there are so many things I eat like kefir, yoghurt, dark choc, tea, coffee - which I’d have to cut out. 😞 Still, maybe I will feel better quite quickly…
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Can I ask what made you want to take the patch off? I really related to your comment about changing your thinking. I feel as though I'm in a constant battle of worrying that my HRT is too high, which I think for me has a lot to do with me putting on a lot of weight when I started the Pill and then switched to HRT. I also take Mirtazapine so it's been a double whammy, but my constant attempts ag reducing the Lenzetto last year ended up causing me nothing but upheaval and reoccurence of my symptoms. Your reasons may be totally different but I can relate to the sentiment!
Definitely starting to feel better with the urticaria, it's still 'there' but the AHs are controlling it. Such a relief!
Hi Gilla, great to hear things are improving. I hear you about the weight increase, I found it incredibly difficult to lose 7lbs recently and hated being bigger.
I convinced myself I was taking too much estrogen because I compared my dose to others. My doc asked me quite a lot of Q’s about other women’s situations and of course I didn’t have the answers. Like most of us I’ve spent days reading forums, research, clinics and came to the conclusion that over 4 pumps/100mcg patch was high E and bad.
After a car accident I got stuck on painkillers, low dose but opiates. It took 6 months of tapering to get off them and I think it’s left me being overly cautious about ALL medication. This is where my thinking needs to change, I need to accept that for now a higher HRT works for me and to stop worrying about cutting it back.
I really relate to you with the worrying, it’s so not worth it! Do you test your E levels? I know I need a reading of over 800 to feel normal and over 1000 to feel good.
Wishing you and every lady on here a good day. X
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Hi Gilla 999 - yes it was the Pfizer jab that upset me for sure. Re HRT now just as I think I have turned a corner I seem to plummet backwards. I am on Estradot which suit me better than the Evorel at the moment the dose is the 50 patch but over the last week I have progressively felt worse and worse with high anxiety (especially at night which wakes me with a jump) and also tachycardia/palps which goes on for several minutes at 150 beats per minute. Had a full cardiology check last year when the same was happening when I had to change to Lenzetto and that was all clear but its really scary and now I feel so shaky and under the weather most of the time having had a few good days last week. Looking at all the evidence it sounds like I need to slowly up my dose. Am very sensitive, ridiculously so, to increases or decreases. The Meno consultant prescribed 75 Estradot but they were way too high to start with and put me on the ceiling so I have been working my way up slowly from a 25 patch and am now on 50 plus a quarter of a 25 patch so about 56. Originally for over 20 years I was on Oestrogel - 3 pumps and used to feel absolutely fine on that but the new formulation of it did not suit me and I did not absorb well so was swopped onto Lenzetto for the last year which again I don't think I absorbed well and then it became unavailable GP put me on Evorel which unfortunately gave me the most horrendous migraines so here I am now on yet another type trying desperately to get the dose right. Have a blood test booked on the 12th so will be interesting to see what my levels are but clearly they aren't right for me due to the symptoms. I dread the nights now as I am awake for a good proportion of them with high anxiety and palps. Happy days ..not lol. Hopefully it will start to sort out soon when I get to the right level. Such a total and complete nightmare all this is isn't it. It seems getting the dose right is a long and weary process. Do hope you are having a good day xxx
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I can so relate to everything you've said Tora. I am also guilty of comparing myself to others - I hear lots of women on the forum on lower doses and with a much lower Estrogen level than me which contributes towards me worrying I'm on too much. (I should point out that no one on this forum has anyone ever said that to me, and everyone has been totally supportive of going on how you feel instead - it's just my own personal worries!). I am very, very similar to you - I need a level of 800 to be functioning but around 1,000 to feel 'good' or myself.
A couple of things that helped reassure me were (1) reading Louise Newsom talking about younger women needing higher doses (2) rediscovering that even before perimenopause my Estrogen levels were naturally quite high which I know from a test I had done years ago and (3) I have quite a high SHBG which I think (?) means there are less hormones available to my system. As well of course as just knowing that - aside from the weight and constipation - I feel so so much better when it is higher (at the right dose). These things might not apply to you but I think what it demonstrates and I try to remind myself of is that there can be a lot more to it than just looking at the dose or Estrogen level alone. And gosh I hear you on medication too - after becoming 'hooked' on two different antidepressants for which I now know was perimenopausal insomnia and not being able to get off them without tapering at tiny doses each month, I too am nervous about adding in too much of something else. Sending you lots and lots of good vibes Tora, it's nice to hear someone echo some of the worries I have.
Joziel yes I've been reading quite a lot on histamine intolerance and agree the diet sounds pretty depressing, especially as it cuts out quite a lot of 'good' foods. Since this Urticaria I've read up a lot on allergies - have you read about the difference between IGE and non IGE allergies? I'm just wondering if the watery eyes ad mucsous symptoms you describe could be part of a non IGE allergy (which is an allergy that involves different parts of the immune system to the traditional allergy). Have you tried cutting certain things out for a few weeks to see if it helps? Just thinking it might be an easier place to start than the full diet :)
Sorry for the long message!
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Gilla... I haven't got as far as non-IGE and IGE allergies ;D Where can I read more about that idea? I feel like I'm just stabbing around in the dark making random guesses at things.
Pippa52... your symptoms sound very similar to mine really. I know that doesn't help you, but it helps me to not feel totally alone! I also dread nights and am awake for a lot of them. You will probably find many posts here from me in the middle of the night, unable to sleep ;D But I'm interested in the fact that you have managed to take estrogen (in some form!) in the past and been okay, because that gives me hope... So you were on Oestrogel with 3 pumps for 20 years, and that was okay...? Have you tried going back onto it since then, and do you know what about the change in formulation stopped you absorbing it? And when you were on the Sandrena were you okay with the palps and jitters? Tell me more about the history of the anxiety/palps or jitters symptoms for you - when they started for you in relation to each product - is it something which only started when you switched to patches?
I'm just wondering if I should try some gel, because my thinking is that if you apply the gel in the morning, it will have worn off come night time (some) and maybe less estrogen coming into the blood stream during the night. Which might help stop some of these symptoms. I mean, the patch is providing a constant supply 24/7 after it gets warmed up. I did some googling and it seems that natural estrogen levels (in pre-menopausal women) vary even over 24hrs. So maybe having a constant steady amount of it, actually isn't the best thing in terms of what the body is used to????
Tonight I am going to remove my 50 patch and leave my little bit of 12.5 patch on only, so I will have much less estrogen overnight. I think the half-life of the patch is 2.7 hours, so this really should reduce my estrogen quite a bit in the night. And we'll see if I have a better night and early morning. If I do, I will repeat the experiment next week at the same time in case it's a fluke - and if it is still better I will see if I can try a gel. It's that or take patches off every night and stick them on again in the morning, which I don't think is going to work?!
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Hi Gilla so sorry to read of your suffering. I haven’t read all the post but my thinking is it was covid/or vaccine, it raises histamine. I am sturuging desperately since my one and only Pfizer March 21 then took covid April 22! My Estrogen simply not working it’s horrendous. I’m afraid to change my Estrogen but now feel it may help and I can’t keep going like this! I’m sooo exhausted, low and anx, palps and racing heart etc etc since vaccine & worse since covid. Increasing did not help! My levels of E are good but being blocked in some way.
I truly feel for you & any other ladies in this horrid situation!
Tina Peers clinic deals a lot with histamine issues is there any chance you could book in there? X
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Pippa so interesting on the Pfeizer jab. I know that Covid itself definitely lowered my Estrogen level and it never recovered (either that or it was just a massive coincidence that the two things happened at exactly the same time). Certainly from my own experience and everything I've read the waking up in the middle of the night with a jump is a classic low Estrogen adrenaline surge, as well as the palpitations. I'd be really interested to know what your Estrogen level is when it comes back (though of course realise symptoms are more important). I hear you on the sensitive to doses thing though - I'm the same and it is a total pain. Could an option be trying wearing two Estradot patches - 1 x 25mg and 1 x 37.5mg?
Sweettooth I think you are most likely right, possibly aggravated by other factors like my Mirtazapine reduction and fluctuating hormone levels which apparently makes us more susceptible. Even the allergy specialist said Covid was the most likely cause. I am so sorry to hear you're having such an awful time with it. I'm wondering if it is in fact Estrogen related, or whether the symptoms you're describing are some kind of inflammation/immune response to the booster and then Covid - your symptoms sound very similar to my sister's Long Covid diagnosis. I suppose it's impossible to know, as it seems the two things are so closely linked.
Joziel I've just read that non IGE allergies primarily affect the digestive system so potentially not relevant to you. Here's a bit on the difference between them. I still think it might be worth cutting out individual foods first (starting with dairy and wheat) for say 3 weeks each and seeing if that helps. Most allergy specialists would recommend an elimination diet as a first step - but perhaps you've tried that already?
https://www.nhs.uk/conditions/food-allergy/causes/
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For me, the waking in the night and palps in the night, isn't related to low estrogen because it wasn't something I had before starting HRT. (None of this was present before starting HRT.)
Before starting HRT, I did have palps in the evenings, but they were the obvious skipped beat palps, not this weird fluttering thing and throbbing. I don't get the skipped beats any longer so the estrogen has fixed those.
I don't remember having these symptoms on the 25mcg patch either. They really started to kick in at 50mcg patch - when my estrogen was only 233nmol, so not high at all. I stayed on the 50 for 7wks and they were still happening a couple times a week when I increased (as instructed) to 75. Then everything went crazy and I got all this even more and freaked out - and reduced to 62.5.
I've now been at 62.5 for almost 6wks and no signs of it stabilising here and going away, either...
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Thanks Gilla, I had those symptoms pre estrogen, was great on hrt then boom after vaccine. Does your sister have good spells please?
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Sorry to hear all of your sad stories with ongoing issues.
Joziel, yes I read that estrogen fluctuates naturally over a 24 hour period, I believe from memory they are at their highest in the morning. Is that what you discovered?
I know first it’s melatonin, then Dhea levels increase for rem sleep, then testosterone early morning.
But not sure about progesterone either?
X
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Well last night I randomly forgot to take my progesterone until 4,30am ;D So seeing I still got all these symptoms, I think it's not caused by the progesterone (I didn't think it was, I've always been fine with progesterone). ;D
Yes, I found that estrogen is naturally highest in the morning as well when I googled. You could replicate that with gel by putting it on in the morning. Not so with patches...
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I might give it a go!
I have tried using my progesterone in the morning but that didn’t work out. X
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Sweettooth I would say my sister has "not so bad" spells and "bloody awful" spells. Her symptoms are primarily high blood pressure, palpitations, headaches, anxiety and what she describes as a constant "buzzing" all over her face and body. Her Raynaud's (which she had very mildly all her life) has also gone crazy since having Covid. When I heard her symptoms i was convinced it was perimenopause and not Covid issues, but her Estrogen blood test on Day 21 came back at 700 so not bad. Apparently the doctor at her long covid clinic says her symptoms are very common among sufferers. Interestingly they are now starting to prescribe HRT for LC sufferers and she is just about to start it.
It sounds like something to do with the virus / vaccine is blocking your Estrogen receptors doesn't it? I wish there was something I could suggest to help
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Hi Gilla, gosh your dear sister has a lot to deal with! I certainly agree that hrt will help her so that’s something to hang on to.
Yes my E receptors appear to have been blocked in some way. I have a ms apt soon so I’m hoping that will move me forward!
I really hope your issues settle soon xxx
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Apologies for having two threads on connected topics, I wish I could merge them somehow!
So my urticaria started to get worse yesterday and I've woken up with it this morning worse than ever - this despite it having mostly subsided over the last week since the antihistamine regime prescribed by the allergy specialist, which I haven't made any change to.
The only thing I have changed is I switched from Lenzetto to Estradot on Friday, and I'm feeling pretty sure this unwittingly involved an increase in my Estrogen because I generally have felt really good (almost hyper) in myself (which I always do when my Estrogen rises) as well as some other signs of high or rising E that I often get.
I have two choices - I either go back to the Lenzetto or I try dropping to 50mcg Estradot, to see if that helps. If the urticaria subsides with either of these then I know for sure that it is being caused by high Estrogen - which would be despite me feeling I need that level to feel well - I have tried many times to drop it in the past and I felt horrendous. It would also be strange because back in September from blood tests I know my Estrogen level was circa 1,200 (too high) where as it's about 800 now. The only thing I can think is that I already know my own Estrogen dropped considerably between December and April (either naturally or as a result of the vaccine and Covid, the timings could be a coincidence) and so I had to increase my HRT accordingly from 2 sprays to the 4 sprays I am/was on. Maybe my body doesn't like the ratio of being supplemented so much by Estrogen, I don't know... stabbing in the dark!
I think it make sense to switch back to Lenzetto for now and see if that calms things down - if it does, then I think I've found the culprit (too high Estrogen)....
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Morning Gilla
I think that makes sense and at least you’ll know.
Certainly my body can only tolerate low doses of estrogen so avoiding histamine reactions.
It might be overtime with your new antihistamine regime in place you will be able to increase again.
Do you take probiotics? Seeking Health do a couple that are especially aimed at people with histamine intolerance. Might be worth looking into them with your allergy specialist.
I was reading an article online today saying that the gut micro biome in people with long covid is compromised. This is interesting as it’s something my previous nutritionist said to me in a recent email exchange and that I should concentrate on repairing my leaky gut.
Sorry a bit off topic but think it’s worth flagging up.
Good luck Gilla, it does seem you’re onto something here x
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Funnily enough Marchlove I'm currently waiting for the results of a complex stool test by Healthpath I did which was very expensive at £389 but is something I've been wanting to do for a long time with the chronic constipation I've also been suffering with. It tests for everything under the sun and I should get those results this week. (I also ordered a Cortisol and DHEA test from them as I saw they offered one - haven't done it yet though!)
I used to take Probiotics but stopped when the Urticaria arrived as I was trying to eliminate things - will definitely look into the ones you suggest. Have you had leaky gut confirmed? I was reading up about that. Interesting link on Long Covid too - would you mind sharing the link?
I could be completely off the mark but after seeing this massive increase in my Urticaria and the only change has been changing/increasing my HRT I just have this feeling that the Estrogen could be to blame - either on its own because I've "needed" to increase the dose or because I'm not getting enough Progsterone in my system to balance it out.
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Gilla, have you read about estrogen and histamine intolerance - and the interaction between the two? Basically, increasing estrogen also increases histamine. I can't remember how or why ;D But I guess if you already have a tendency towards histamine intolerance but your body is usually able to clear the histamine, increasing estrogen might just tip you over the edge and lead to symptoms.
Are you trying a low histamine diet? This is the official list: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf But for £2.50 you can download an app for your phone with all the foods listed on it which is way easier.
Taking anti-histamines whilst still eating foods high in histamine might not work. Here is a pdf from the Newson clinic: https://balance-menopause.com/uploads/2021/09/Histamine-Intolerance-1.pdf
Which is all to say - decreasing estrogen might help your histamine symptoms, but your body in other ways might still need/want that estrogen (ie - you feel bad when you decrease in other ways). So you might need to reduce your histamine intake and help your body to clear it, without reducing estrogen. That means a low histamine diet and there are some supplements which help.
I am about to try the low histamine diet in a few days (still finishing up some other foods and getting low histamine ones in!). I think your symptoms with itching etc sound much more classic histamine intolerance than mine do, so I reckon you would see good results.... and might not need to reduce estrogen...
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OMG just read the Louise Newsom link and it's like she's written it about me ;D
As always Louise Newsom's advice is thorough and practical. Thank you for this Joziel - I think it makes sense to switch back to the Lenzetto and at least try to get to the place I was in a few days ago (where I still had wheals but wasn't aware of them during the daytime) and then start on the low histamine diet. It can't hurt to try.
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Gilla, I know - I keep seeing so many women on FB and forums with itching and histamine issues and I just think the estrogen-histamine connection really isn't known about or understood.
Here is a really good interview with Tina Peers who is great with histamine intolerance issues - she is a doctor whose own daughter has it (badly) and she had to figure it out: https://lizearlewellbeing.com/podcasts-videos/histamine-intolerance-with-dr-tina-peers/
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Gilla. There are also some histamine block tablets out there... I haven't done much research. But they do exist. So might be worth a look.
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It's not really a 'block' it is a DAO supplement, which is basically taking the thing which your body doesn't have enough of, to break down the histamine. (DAO.)
But they are incredibly expensive, about £1 a capsule, and you need to take them about 15mins before you eat foods containing histamine. So whilst they are good if you need to eat out on an occasional basis or want to eat something with histamine occasionally, they are not much good on a regular basis because you'd need to take so many so often - it wouldn't be cost effective.
It is best initially to follow a low histamine diet to diagnose whether this is actually the cause of things - then you can experiment to find out exactly what you can eat and which supplements can help you further.
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Ah yes, I see that. Dao. That's it. I just read the news on leaflet.
Yes, very very expensive. But perhaps worth trying to identify the issue.
Interesting reading that. I'm very allergic... Got lots of problems, but had them all my life. However, peri has been hell for me - makes, me wonder if indeed it is a histamine issue, rather than purely an imbalance of estrogen causing me problems. :o
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Hi All
This is a very good article by Dr Lam regarding histamine intolerance.
https://www.drlamcoaching.com/adrenal-fatigue/complications/histamines-and-afs/
One of the main causes is having a leaky gut, which we were talking about before.
Yes cutting down in high histamine foods is a good idea but it doesn’t actually address the root cause.
Gilla- I’ll get back to you when I can find that long covid article again! X
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Hi Gilla
Here is the article from The Guardian, not the actual study I’m afraid.
https://www.theguardian.com/society/2022/jun/28/are-pockets-of-covid-in-the-gut-causing-long-term-symptoms
Yes I was diagnosed with it about 5 years ago. It came about as a result of taking heavy antibiotics to treat Lyme disease bacteria. Of course no mention from them Infectious Diseases expert about the effect it would have on my gut!!
I thought I’d got mainly on top of it all but since getting covid in May it’s come back big time! I think my gut will always be susceptible and I should have been more proactive.
I’m terms of constipation, Estrogen speeds up gut motility and progesterone slows it down, so balancing the two is quite tricky in terms of IBS-c and IBS-d.
Well done for ordering the cortisol Dhea test. It might be fine but at least that’s something you can cross off the list. Will be interesting to hear the results.
X
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I totally agree about estrogen speeding up the gut motility and progesterone slowing it. It was like clockwork every month when I was cycling off hormones - constipation just before a period and then the opposite when I got my period. I actually mentioned it to my GP at the time and I remember them saying "No, never heard of that before - never heard of hormones affecting digestion". Honestly, the ignorance of doctors is baffling sometimes. I sometimes think a multiple choice questionnaire on a computer would be about as good as most GPs are at diagnosing things.
Here is a good link explaining the connection more between estrogen and histamine: http://integrative-medicine.ca/why-are-women-more-sensitive-to-histamine/
And here is one by the same doctor talking about night time and why you often get insomnia and early waking etc: https://integrative-medicine.ca/is-histamine-affecting-your-sleep-cycle/
Maybe we should all try a low histamine diet for 2 weeks and start a thread about it ;D
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I find this all so interesting - Marchlove I have some symptoms of leaky gut so really interested in the connection between that and histamine - I should know if it's relevant to me when I get my stool test results this coming week. Thanks for sharing the link will have a good read!
Joziel interestingly it is the opposite for me - it is Estrogen which slows down my gut motility (there have been some studies showing it to be the case - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3823955 https://www.mindbodygreen.com/articles/the-connection-between-estrogen-and-constipation/ /). Remember that Estrogen is also high in the second half of your cycle and also plummets when your period arrives - your issues are the same timeline as for my mine but Estrogen is definitely the cause for me - it started when I went on to HRT and was the same prior to Peri in the last half of my cycle when my Estrogen soared.
I have just returned from Waitrose and spent a small fortune ;D Along with gluten and dairy free which I've been doing for the last week, I am essentially eating twigs and leaves for the foreseeable future! Would love anyone else to join me in my misery ;)
Joziel your "multiple choice" comment made me chuckle - recently I had a GP sit and read the NICE guidelines about something on his computer in front of me... that I'd already read and knew... and that was basically the limit of him diagnosing my problem. GPs I encounter seem to be SO sensitive to us mere mortals researching and educating ourselves - I have been told on more than one occasion not to do it, even when I make an effort to say something in a way to the GP which isn't "telling" but mentioning I've read something and asking their opinion. Too many I have encountered have a God complex!
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Thanks joziel
There was an interesting link on one of the about probiotics for histamine intolerance.
So thought I’d put the link here
https://www.optibacprobiotics.com/uk/professionals/latest-research/general-health/which-probiotic-for-histamine-intolerance
It’s very important not to take the wrong probiotic as some actually increase histamine release.
Know what you mean about God complex Gilla! It’s like walking in egg shells!
I’m sort of 90% gluten and dairy free. Can’t quite cut it out completely though, but it certainly helps.
X
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Yes I’m going to be quite strict with my 2 week low histamine diet because I want to either diagnose it or rule it out and move on. So I need to avoid anything controversial even if I’m going to be eating very boringly for the next 2 weeks. No probiotics either.
If I discover I have this then I will figure out how to fix the leaky gut and safe probiotics etc, but these 2 weeks are about diagnosis for me.
I eat a lot of yoghurt and kefir so to substitute for that I’ve ordered some coconut milk and cream - the coyo yoghurts that are for sale have probiotics added so im going to mix my own coconut stuff up and use that instead. And whilst chia is okay, leaving it overnight in the fridge is a no, so I’ll just let it soak for 10mins and then eat.
Remember you can’t eat leftovers from the fridge either - the longer food sits around, the more it ages (decays) and builds up histamine. You can freeze stuff to eat later but not refridge…
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That's helpful to know, thanks Joziel. Wishing you the best of luck with it, keep me posted! On the dairy and gluten thing, the only exception for me is I'm having a splash of milk in my tea. I'm having Almond milk with coffee and everything else (glad to see Louise Newsom says this is ok!) but I can't find anything that tastes even half decent in tea and I can't cope without a cuppa!
Interesting link Marchlove and really usefyl to know. I'll see what my test results come back as this week before taking anything.
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Gilla, tea and coffee are a no-no for a low histamine diet. You might want to check out the list of foods and be sure only to eat foods that score zero/green for at least 2 weeks: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
Peppermint and chamomile tea is okay. That's about all...
Milk is fine, as is any fresh dairy - including soft cheese, ricotta, mozzarella, mascarpone - but no mature cheese or any other cheese really. It will be a lot if you want to rule out gluten, dairy and be low histamine all at once - but possible!
With nut milks, almond scores a 1 on the histamine chart so should be excluded for the 2 weeks as well. Not sure if any dairy free milks are also low histamine, you'd need to look that up.
It has taken me a week to learn about what I can and can't eat, I haven't even been shopping for it all yet. It is a very restricted diet if only eating 0 scoring foods, but I think that is necessary to get an accurate diagnosis... If you feel much better you can then experiment to find out what your threshold is and how much of what you can eat and be a bit more experimental. I know some people drink coffee for eg, and are okay - as long as they don't also at the same time eat other high histamine foods. It will all take some practice, but IMO diagnosis accurately is the most important thing to start with and to do that you need to be pretty strict.
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Noooo I'll do everything else but there's absolutely no way I can give up tea and coffee!! I don't drink, smoke, have a sex life, eat gluten, eat dairy... tea and coffee are all I have ;D I honestly think I would rather have the monthly immuno suppressant injections from my allergy specialist in a couple of weeks time to get rid of the Urticaria than give up tea and coffee :'(. But I'll cut out everything else which I'm sure can only help (if it is the problem) as well as switching back to Lenzetto and see how I get on. I'm also planning to increase my Progesterone this cycle via the BHRT lozenges on top of the 1 Utro vaginally and see how I get on with that (as I know Prog balances E).
Keep me posted on how you go Joziel!
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Hi Gilla
Don’t dismiss the article that I posted previously about progesterone hypersensitivity. It does say in the article that the allergy skin test for it is unproven.
https://www.verywellhealth.com/hormone-allergy-82663
I know you started by seeing some sort of cycle with it but then that got blurred as time went on, which of course confuses things somewhat.
I recalled today a lady I used to work with had a similar reaction and she was told it was from the progesterone and given immune suppressant injections.
I’m not saying it is the progesterone but don’t dismiss the idea because it didn’t come up on the allergy test.
I hope this hasn’t thrown a spanner in your plan but just wanted to flag it up. xx
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Well I can understand not wanting to give up tea and coffee, seeing I am basically continually drinking both (decaf coffee!) every day.
But even I am going to give them up for 2 weeks and switch to peppermint tea. I think we can do anything for 2 weeks and it will just muddy the waters with a diagnosis otherwise. If I improve, then I will have to figure something out - like how much I can have and whether I need a DAO supplement to be able to have it and so on. But we'll cross that bridge later. For now I just need to know what's going on...
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Gilla - as much as you love coffee, don’t have any the day you do your cortisol test.
Coffee increases cortisol so it will give you a false reading. X
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Here is a super article I just found explaining the connection between estrogen and histamine: https://www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/
"The connection between mast cells, histamine, and hormones is that:
Estrogen stimulates mast cells to release histamine and down-regulates the DAO enzyme that clears histamine. At the same time, histamine stimulates the ovaries to make more estrogen. The net result can be a vicious cycle of estrogen → histamine → estrogen → histamine.
Progesterone stabilises mast cells, up-regulates DAO, and can therefore reduce histamine.
Many of the symptoms attributed to so-called “estrogen dominance” (a term I do not use) are actually symptoms of histamine or mast cell activation. For example, mast cells and histamine play a role in both endometriosis and premenstrual dysphoric disorder (PMDD)."
As I also have mild endometriosis, all this is getting very interesting...
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Interesting indeed.
I'm one of those using the estrogen dominance term. ;)
I'm trying to use progesterone to balance me. When I start or up a dose it increases the suseptability of estrogen receptors to the estrogen, so my estrogenic symptoms get worse!! But actually - is it increasing my histamine? . Some of my symptons are very allergy like like full ears, dry sinuses. Bit they defo come with hormonal changes.
Either way, I'm hoping the prog eventually helps me balannce abd calms the side affects of (in my case) low prog/normal estrogen = estrogen dominance in my case.
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I'm hoping the same as you Crispy! I start my extra BHRT Prog lozenges in a few days time...
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Crispy, yes allergy symptoms like that can be histamine - especially if you notice them at particular points in your cycle more than others.
I have a watery right eye(!), a drippy nose (always blowing my nose - wouldn't leave the house without a tissue up my sleeve) and over-production of mucous, especially after eating - resulting in a wet cough or sometimes it just comes into my throat and I swallow it... YUCK. These symptoms have gone on for years and I used to think they were low estrogen symptoms, but they haven't got any better since starting HRT (unlike so many other symptoms). So I wonder if they could be histamine related.
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It's such a minefield.
I've not noticed anything cyclical, but that's probably because I'm always trying something to alleviate my hormonal symptoms.
What I have noticed is a big flair of some symptoms on the pill... And also now, on bioidentical progesterone... I seem to be cycling through every friggin symptom I've ever had. Hopefully this before I balance out ???
One of my weirdest symptoms is a really sore scalp. Moving my hair is agony and my scalp tingles. Not got it just now, but did a few weeks ago. Then gone again ??? Maybe that's histamine
What dose lozenge gilla??
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Crispy I'll be taking 25mg on top of the 100mg of Utro I use vaginally. My plan if all goes well is to work my way up but I want to start slowly.
Yesterday morning after removing the patch in the morning and switching to my Lenzetto in the afternoon I woke up with no wheals at all. This morning covered I am covered head to toe in them, so itchy... it's so strange but I'm wondering if it was the initial drop in Estrogen that happened when I switched from the Estradot back to Lenzetto that gave me a day of respite. I'm pre ovulation now so my E will be surging.
What dose are you on Crispy? And you're also taking BHRT Estrogen is that right?
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Awww no!!! That's awful gilla. But you're probably going to have to go through these trials to confirm, one way or another.
No estrogen here. I think, as do my clinic, I'm low prog compared to my estrogen (which is normal, not high). Do I'm only on bhrt prog. Had a rough time getting on it. I'm now on 40mg. Split between troche and cream. Also on testosterone.
Still getting every symptom under the sun. Plodding on though. :o
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Morning Gilla
Sorry to hear you are still having such awful symptoms.
I came across this very comprehensive up to date review of progesterone hypersensitivity.
https://www.uptodate.com/contents/progestogen-hypersensitivity/print
In the review it says that estrogen hypersensitivity is even rarer that progesterone hypersensitivity and the difficulties with allergy testing.
It’s a rather complicated issue it would seem but I thought you might like to read it.
X
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Oh sorry to read your update Gilla, I have no wisdom to offer but just thinking of how frustrating and hard this must be for you.
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Hives and itching are very classic histamine symptoms and increasing estrogen (or even adding it in as HRT) increases histamine in turn... So if you have histamine intolerance or were previously teetering on the edge of it, estrogen will push you over.
But you've no way to tell if this is histamine intolerance without doing a strict 2 week low histamine diet - which does mean cutting out tea and coffee and chocolate and many other things you might be used to eating. Unless you do that, you won't be able to confirm it. (Unless you have a high threshold and cutting out other things is sufficient to bring you below it. But that's a big assumption.)
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Excuse my ignorance...
But if high estrogen is causing high histamine for gilla through estrogen supplementation. How does cutting out histamine rich food prove it??? Surely the histamine from the estrogen would be a lot stronger than the food histamine, since it only triggered since supplementing with estrogen???
I get the low histamine diet if you struggle with histamine in general... But its not making sense for gilla... To me anyway. And it might only be me...
:o
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Crispy, it's all explained in the post above, this one: https://www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/
Quote:
The connection between mast cells, histamine, and hormones is that:
* Estrogen stimulates mast cells to release histamine and down-regulates the DAO enzyme that clears histamine.
* At the same time, histamine stimulates the ovaries to make more estrogen.
* The net result can be a vicious cycle of estrogen → histamine → estrogen → histamine.
Progesterone stabilises mast cells, up-regulates DAO, and can therefore reduce histamine.
It's about reducing the histamine overall as much as you can. Many foods are extremely high in histamine which we regularly eat. If you almost eliminated the histamine you were eating, it would very likely be sufficient - after all, our bodies are supposed to cope with some amount of estrogen and the amount in HRT is not that high. A state of zero estrogen (as we all know!) is extremely bad for your health so that's definitely not what the goal is. It's when we massively increase histamine through what we ingest that things get a bit crazy.
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Yeah, I saw all that about the estrogen, histamine loop... Which is why I couldn't see how reducing it from the diet would solve it.
But hopefully for you it does :)
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The diet is the biggest source of it, so if we can eliminate it from there, it will fix things.
Although of course no idea if this is the cause of my problems at the moment.
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Really sorry to read this Gilla, you’ve got enough going on without this getting worse. I hope it eases soon.
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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.
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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.
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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???
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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
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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
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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?)
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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.
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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 ;D 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?
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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)
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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
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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
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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
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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
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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.
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Hi scampi
No, I'm not on estrogen at all. To cut a long story short - my estrogen is normal, but because my prog is very very low (as often happens, first in peri) I'm unbalanced so I feel the estrogen surges and become symptomatic.
That's the theory anyway. Common theory in the states avd Europe - not recognised by NHS. Taking progesterone only has been everything but a walk in the park!!! So, I'm currently on 10mg troche and 30mg cream.
I'm under the Marion Gluck clinic, so they prescribe the compounded. However, I've recently switched to buying myself onas progesterone cream. I'm finding it much better to tolerate and I'm getting different reactions, my hunch is I'm absorbing it better. There are a lot of additives in the compounded stuff. Obviously my troche is compounded.
Anyway, that's where I'm at. My contribution to this thread is probably the fact that I can recognise starting low dose prog or changing dose seems to sensitise the estrogen receotors, so you get heightened response to estrogen for a month. During that episode for me, I defo get heightened allergic reactions, so assume that's estrogen increasing histamine.
Where are u at scampi??? Are u not taking anything??? This is such a long journey, isn't it??!
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Gilla - forgot to reply. Busy weekend.
So, my prog is very very low. That was my day 21 ratio.
I'm terns of taking the 40mg prog all month... Im obviously not taking 100mg utro in luteal phase like you... If that builds up in the body, you will be taking more than me overall, so it might affect ovulation. All you can do is try.
Or... You could just try the extra 25mg at luteal time... That is how we're meant to take prog. I'm taking it all month as if I break, it breaks the cycle of me trying to dominate the estrogen with prog. I'm only intending to take continuous for a short time.
I'm like you... I have the products now. I just merrily do my own trials. I know MG are happy for me to take continuously and they're also happy with me taking 100mg...so anything under that I'm just trialling myself. X
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Hi Gilla,
Sorry to read things are still tough.
I hope you don’t mind me asking if your thyroid has been checked and if you’re monitoring your blood sugar? I assumed both had been investigated as you’re seeing an Allergist but thought I’d ask.
I hope your test results help.
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Gilla and any other ladies I am sorry to read of your ongoing suffering.
I can only say from my experience that the vaccines and Covid have affected me, they both raise histamine and can affect hormone receptors.
I have now been told I have long covid! I was fine on my Estrogen til first and only Pfizer jab, the palpitations, rapid heart rate, sweating etc ramped up it was truly awful. Things were improving and I got covid end of March and it all kicked off again plus the backache and crippling fatigue.
I just wonder if Covid or jabs have had an impact on some of you ladies regarding histamine issues?
I have started on Quercetin, zinc, vit c, vit d, anti hist x 2 daily and just yesterday began dao. 🤞🤞❤️
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Arg, so many of us with this stuff :o
I think the covid jabs and covid itself can affect the ovaries, meaning that they can stop working altogether if they were on the edge anyway - so then you get less estrogen. And so some of the symptoms might just be that you need more estrogen again.
I haven't had Covid (to my knowledge!) and I had both my jabs before going onto HRT. About a year before. So no, these symptoms are not associated with that for me.
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Interesting sweet tooth as I was doing ok, but took my eye off the ball eating higher histamine and not recognising the signs then had a cold virus and still didn’t change my ways then got a really bad sore throat virus end of May and this really sent my ‘histamine bucket’ over flowing. I still don’t know if it was covid. But either way viral infections really can affect this.
How long did it take after your first vaccine to start improving (until covid anyway, so very sorry to hear that) x
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Crispy, I’m not on anything now as what I thought was peri was histamine and mast cell issues. I mean I’m likely early peri at 43 but not as far along as I suspected. Oestrogen really tipped me over that initial time.
Felt well for a long time then the aforementioned virus and bad diet made me flare up. Just had new Mirena fitted whjch cured me last time but I’m actually reacting to that this time! Argh!
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Joziel - feel your pain. If your mast cells have been activated it may take a good while to calm down. Tina peers says to try and keep them as calm as possible and they eventually replace themselves. So carry on with the diet but if your ‘bucket’ has overflowed diet won’t fix it alone I don’t think. Or at least you may have many symptoms until the mast cells replace. Don’t give up hope you will get better and be able to eat the stuff you like again! Xx
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Thanks Scampi, that gives me hope. How long does it take for mast cells to replace themselves? Is it going to be before my 2 week diet trial is up? ;D ;D
The thing is, I'm pretty sure that if I stopped HRT today, all this would have gone within a few days - a week max. (Of course I'd then have all my peri symptoms.) I don't know how that fits with it being caused by mast cells....?
Can I ask, how do you know that your estrogen is okay? Did you have it measured? When I first saw a doctor about all this and had my original bloods done (pre-HRT), he said he couldn't test my estrogen because I was on the desogestrel POP which would make the test inaccurate. He did do my FSH, which was still v low (4). Then I saw another GP recently who tut-tutted about this and said that they could have done estrogen then to get an idea, even though I was on desogestrel. :-\ No idea who was right, but it would at least have been interesting to have that as a figure. Even if the estrogen was being suppressed by the desogestrel, it would have shown how much is circulating in my blood and how much my body has access to...
I FEEL like my estrogen is too high now, but my bloods were only 233nmol on the 50 patch. And then I get worried about protecting my bones and osteoporosis. But I can't live how I am - so at some point I'm going to need to drop back on the estrogen if this continues, to the 50 patch. I don't want to try more than one thing at once though, so have to finish this 2 week diet trial first....
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Joziel have your symptoms come on only after you started hrt?
Allegedly cells take 6months to replace themselves but it’s gradual.
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I do think that they could have tested your E on the pop. Your FSH is very low so that’s what they look to.
Have you tried a lower dose of E to try and lower the histamine a little? X
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6 months?!!?!? :o :o :o ::)
Yes, the symptoms (the cardiovascular ones) have all come on since starting HRT in March. I was fine on the little 25 patch, then at 50 I started to get this happening. I was more focussed on my endo symptoms flaring at the time so I just sort of ignored all this as 'settling' and didn't think much of it - until I increased to 75 and everything went totally bonkers with lying awake all night and palps and high blood pressure. I went to A&E the next day (ECG normal) and then I decreased back to 62.5.
I didn't want to go all the way back to 50 because my estrogen was only 233nmol at 50 and also these symptoms at night were still happening at 50 - so it might be the worst of both worlds. Although perhaps it wasn't as bad, I can't remember.
I do have some other things scattered through my life which I think could be relevant: When I went on the combined pill at 21yo, I had the exact same thing happening. I just went and got the POP instead. But - this is something not just related to menopause or recent changes or whatever, it's something ongoing and long-term part of me...(!).
And then things like: I am hypermobile and there's a connection between hypermobility and histamine intolerance apparently, with 80% of people who have histamine intolerance also being hypermobile.
I have mild endo and I think there is supposed to be a possible link between endo and histamine intolerance/MCAS.
And I have a few symptoms from before starting HRT which haven't gone on HRT, and which are potential histamine intolerance symptoms: Joint pain (improved but not gone); and a watery eye and nasal drip, especially after eating (causing a wet cough after eating). I can live with those things though, I just need this stupid nighttime thing to stop ::)
I don't want to lower the estrogen until I'm done with the 2 week diet trial or I'm not going to know what has worked - and I'm going to end up potentially not eating any of my favourite things much longer if I get confused about what's causing what... I also want to do a proper 2 week trial so if I see a doctor who wants me to do that, I've already done it and won't be tortured like this again ;D
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It sounds like a plan to do your two week trial. Dr Peers would plan to take you off hrt or lower the dose, get the Histamine sorted then go back on the lowest possible dose.
But, remember you haven’t even tried antihistamines yet. You could try a supermarket own brand of loratadine for example morning and night and see if that stops the night time and morning stuff.
I also am having the same issues the last 2 days with waking at 4am with chest palps etc. they subside mid morning. My E is rising in this part of my cycle and presume it’s a reaction to that. (And my mast cells are jangled from coil insertion) xx
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I guess even if you’re not eating histamine, your mast cells are active and therefore pumping out histamine regardless so the diet will help but not cure. Maybe try antihistamine after your 2 week trial? Xx
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I'm kinda reluctant to use anti-histamines. I know that sounds silly, but they can have other effects/side effects on the microbiome and the stomach and I just don't want to create more problems long-term. Same goes for prescription mast cell stabilisers. But maybe I'm being silly and I just need to do more research.
Everything I read says to do this diet trial and let that be the diagnosis. So if this doesn't work, or even help - I think I have to conclude that the diet is a bit irrelevant for me. It doesn't mean it's not histamine/mast cell, but perhaps it's not gut-based like it is for most cases of this - but estrogen making the mast cells release histamine.
I'm taking vitamin c 4x a day and I've got 2 different brands of quercetin on order - which seem to be taking forever to arrive. I do have some melatonin (bought in US where you can get it over the counter), I don't know if I should try that before bed too...
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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
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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
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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
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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?
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Yes probably :)
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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 ;D 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!
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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
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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
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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
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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?
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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
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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
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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
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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.
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Well, it was another bad night here ;D 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.
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It might be worth a try with the antihistamine, even something like loratadine or cetirizine which you can get over the counter. Just as an experiment. I certainly identify the pumped daytime feeling from high histamine times when I was on estrogen. X
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Scampi sorry for delay!
For all other ladies too….
Got jab end March last year, hormones went crazy and I mean crazy!! The surges of anxiety were unbearable, headaches back, heart rate and palpitations were cruel! My specialist increased my Estrogel tablet until double dose but it only made thing worse, I was literally unable to stand and felt sooo depressed on the higher doses.
Because I then had to start decreasing this all took time and it’s toll….so was only by March this year that I began seeing improvement and then I got covid April past, mild symptoms but exact same reaction as jab, honestly I thought I had reached the end of the road.
I read that covid and vaccine can heighten histamine and also that they somehow affect the E receptors. My body was constantly on overdrive, my GP prescribed diazepam to try to calm things when really tough but I’m not sure they even helped!
Anyway Iv been told I now have long covid due to immense fatigue, backache coming and going etc etc .known as covid coaster as it’s up & down.
I am getting more good days just lately which I am so v grateful for!
I take 2 x otc anti histamines, 1 DAO, high vitamin d & C, zinc and quercetin…..vit b complex & magnesium…rattling big time. I’m also avoiding some of the high hist foods👍
I hope this is of help, it’s just my knowledge and experience, but I was fine before covid and vaccine…..we all react differently I know xxxx
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Interesting sweet tooth. It may well have been the booster vaccine Gilla, that exacerbated everything. And then the getting actual covid more recently.
Some of my symptoms feel very much like yours sweet tooth.
For those who take DAO supplement, do you take before meals or other times. Note you take one a day sweettooth - when do you take it?
I have some awaiting delivery
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That’s ok as at the Mo I feel bad upon waking (hopefully the fexo will continue to help) and then after eating (I get jittery and head fog, anxious, low) so in that sense the DAO should help. I don’t want to start on H2 blockers so hopefully the DAO should help.
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Joziel that's very interesting and positive on the Utro not preventing ovulation for you - gives me some tentative hope!
On Friday I have my first monthly Xolair injection which is an immunosuppresant for the urticaria. A bit nervous about side effects but praying it works and I at least get a bit of relief without too many side effects... it's not a cure though, as soon as you stop it comes back and the injections are monthly. But at least it might bide me some time to work out what's going on and address.
I had my stool test results back today which confirmed leaky gut and also severe lack of absorption of fats, sugars and a couple of other enzymes I can't recall the names of. So thanks for the Zinc recommendation I'll look at that!
Sweettooth it was lovely to hear you say you've had a few better days recently. Keeping everything crossed for you that it continues, I know what a terrible time you've had of it.
Joziel I hope you have a better night tonight!
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I’m hopeful for you Gilla as Xolair is a known treatment for mast cell issues so I hope it’ll be the breather you need. If they’re what’s pumping the histamine out it should settle things. And mast cells replace and calm so you might find a few months of injections and you can stop and you’re in a different place. One with no urticaria! Xx
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1.30am. Arrrgggg. So tired. I start to drop off and then wake with a jerk just before deep sleep 😴
Heart now beating hard and faster than usual. I’m just so over this. I don’t think I can complete my two week diet trial without trying to change something else.
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Hello everyone, it’s now 3am >:( I hope you are all fast asleep, just like my snoring husband next to me.
So I just took an anti histamine. Ceteri-something. Out of sheer desperation. I hope it works and I get very sleepy and finally get some rest.
Which of these should I do next:
1) Double utrogestan to 200mg and stop the desogestrel. Hoping that this extra progesterone will stop the histamine symptoms? I have enough meds as I was supposed to be doing this anyway.
2) Reduce the patch down to 50? From current 62.5. Bearing in mind my estrogen on the 50 was only 233nmol and I’m 44. I was still getting these nighttime histamine symptoms on the 50 but perhaps less extremely - so it might help but i don’t think it’s going to be a total fix. I had no notable peri symptoms on the 50, no more than now anyway. So Peri symptom wise I haven’t achieved anything going from 50 to 62.5. It’s just that the bloods were a bit low.
What should I do? Or both?? As soon as the stuff I’ve ordered gets here I’ll be starting quercetin and DAO and zinc…
Will it never end… :o I am starting to think Michael Jackson had it right with the propofol. Although perhaps with better monitoring….
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Morning zoziel
Sorry to hear of you bad night, hoping you got back to sleep.
I’d do one thing first, probably lower the patch to 50. You can’t go by bloods. I was reading the other day that our estrogen actually peaks in the early hours of the morning and then has about 3 more peaks and troughs throughout the day.
What zinc did you order? I forgot to post some links about zinc-l-Carnosine for leaky gut, but here’s one
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7146259/
X
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So is that a zinc-l-carnosine brand? X
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Morning Joziel,
Sorry things are rough, interrupted sleep/insomnia is no fun. For me sleep disturbance is connected to anxiety and palps which I’d do almost anything to never feel again.
If you change your estrogen now (it was improving your symptoms up until the day before diet change) and/or add other meds/supplements I don’t see a reliable outcome for your trial and potentially a return of worse symptoms.
It’s taken incredible strength to get this far but is it healthy to continue?
Good luck whatever you decide.
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Hi tora / yes it would affect the diet trial and me being all scientific and not changing more than one variable but to be honest, I’m now on day 6 of the diet trial which has been pretty rigorous until now - and have noticed zero improvement- if anything, things are worse!!
I do think I’d notice an improvement by now if diet was going to help. But I also can’t go on like this and need to try some other stuff as well now.
I may have to completely stop HRT and get over these symptoms and then increase very gradually from the start again. And I may be someone who can’t tolerate a decent blood level of estrogen but hopefully I can have some and it will do something…
Not sure what you mean with the estrogen helping symptoms until the diet trial. In terms of my original peri symptoms things are the same at 50 and 62.5 for me. I haven’t seen any further symptom reduction increasing to 62.5 from 50. I’m not benefitting in terms of peri symptoms being at 62.5. I just increases because my bloods were a bit low and I still had some joint pain. The minor joint pain is still there and hasn’t reduced further at 62.5.
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Gosh ladies aren’t we all having a time of it!! Sorry for each and everyone and sending heartfelt vibes that we all find continued peace v soon❤️
Scampi atm I’m just taking one a day b4 a meal no particular time of day, I’m not sure if it wud be better to take 2 daily🤷♀️I hope things improve for you soon, could well be the jab and the Covid indeed.
Gilla thank you, there is no quick fix for sure! Can I ask where did you have stool test done to discover leaky gut?
Joziel I pray things fall into place for you, it’s a minefield knowing what to do for the best❤️
Ps does anyone know which probiotics are best for histamine etc? ❤️❤️
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Not sure what you mean with the estrogen helping symptoms until the diet trial. In terms of my original peri symptoms things are the same at 50 and 62.5 for me. I haven’t seen any further symptom reduction increasing to 62.5 from 50. I’m not benefitting in terms of peri symptoms being at 62.5. I just increases because my bloods were a bit low and I still had some joint pain. The minor joint pain is still there and hasn’t reduced further at 62.5.
Hi Joziel,
I just meant that you felt better immediately before the diet than you do now. Would it not be better to return to a few decent nights’ sleep on regular healthy diet and then make a decision about changing E dose?
I’ve just seen a previous post of yours about farting and slow metabolism, what you wrote is identical to my experience! it has taken me months to get my metabolism back so perhaps I’m sounding over cautious around diet changes. . .
I’ve also just read that you got palps after starting HRT, same here.
I can’t take antihistamines of any type due to them causing (me) to wake up, even the drowsy ones. Have you noticed anything similar before last night?
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Just read on DAO can be taken b4 each meal. I’m going to take twice daily for now…..hoping all this will settle when covid does one🤨
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Hey folks - It's tricky when there are multiple different people to reply to ;D
Sweettooth said >Ps does anyone know which probiotics are best for histamine etc?
Yes there is a great article here on that: https://healinghistamine.com/blog/best-probiotics-for-histamine-intolerance/
You can search for the probiotics mentioned there separately by yourself but you can also buy specifically 'histamine friendly' ones from Seeking Health - called ProBiota HistaminX and they do another called Probiota Bifido - both of which are okay. (I'm assuming it's within forum rules to actually mention things you can buy somewhere. I would give you links to them, except I've just had an email from admin saying they've removed many of my posts with commercial links because apparently posting commercial links is strictly against forum rules. So if threads don't make sense now, that's why.... I honestly thought that meant I couldn't advertise products, not that I couldn't post links to products - but apparently it means the latter.... )
And yes you can take DAO before each meal. You might get through a lot of it and it might be quite expensive though.
Tora said > I just meant that you felt better immediately before the diet than you do now. Would it not be better to return to a few decent nights’ sleep on regular healthy diet and then make a decision about changing E dose?
Oh right. Well, this diet I'm on really shouldn't be responsible for how I feel now. There's no reason that a low histamine diet would be causing me to experience a more intense version of these symptoms. And I wouldn't think that returning to a regular diet would help at all either. In fact I'm a bit worried that if histamine is a factor in any way that returning to a normal diet will make things worse. It is probably just coincidence or about the length of time I've been going through all this leading to things intensifying...
Yes, the farting and slow metabolism stopped when I increased estrogen. But it was pretty good at the 50 patch. (Not at the 25.) So I am hoping that will still be okay. I think I do have some FodMap food issues as there are some foods which make me bloated and fart(!)... they include aubergines, leeks, squash and avocados. But I don't totally avoid them, I just know I will be a bit uncomfortable(!).
I've never taken an anti-histamine before last night. I took it only at 3am, so I already wasn't sleeping. At 4am I managed to get some kind of sleep for the first time and dozed till 7.30am. I actually don't feel tired now (meaning, that I want to sleep), I feel exhausted and jet-lagged and like I need sleep, but not tired. Which in itself, is part of the problem.
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Thanks for the DAO advice, still awaiting mine but I will try two before meals. As for probiotics, Invivo are good for these and majority are good for histamine intolerance. You can email them too, for advice. I took Bio.Me Barrier for a while.
Joziel, did the antihistamine make any difference for you. I know when I first went on antihistamines I took one in the morning each day but still woke with palpitations. Then I was advised to take morning and night and that did help.
If you can tolerate dropping your E, I think this may more difference than diet. Maybe try that first and see if you’re ok on the new dose before maybe trying antihistamines morning and night?
You don’t have to take them forever. A lot of people can drop to one a day when they’ve rebalanced or even nothing and just take on a bad day when E is higher xx
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Sorry saw your reply re AH’s Joziel. Try different antihistamines. Cetirizine makes me drowsy but not loratadine. I know they’re all non drowsy but people have different reactions to each one. My husband has hay fever and cetirizine does nothing for him but loratadine does.
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I'm all for feeling drowsy - if I can then sleep ;D Unfortunately last night I felt drowsy, started to drop off, and then some primitive part of my brain woke me with a jump start each time. This happened several times over and over. Then it's like my brain 'learnt' not to try to drop off, because this unpleasant jumpy thing would happen - and then I was just wide awake.
The anti-histamine didn't really change how I felt except perhaps making me drowsy enough again to drop off. The throbbing and trembling and dozing lightly all continued.
I took off the little 12.5 patch first thing this morning, so I am now officially back on the 50 patch. :'(
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Joziel …. Fingers crossed for you that removing the extra bit of patch really helps you to start feeling better. Xxx
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Thanks Pippa, I know you’re going through similar :'(
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So I've had some interesting news which I wanted to share!
Yesterday I had an E and P blood test. The last time I had them both tested was May, and I always test on day 21 of my cycle. After my Estrogen level dropped between Dec-April (whether through Covid or naturally) I increased my Lenzetto to 4 sprays and it took it back up to around the 800 pmol level, and this month's reading was 841. It's still a bit high in general I worry, but no different from how it's been the last few months.
My progesterone on the other hand which has always been about 50 nmol came back at.... 16!! That's on the peak day in my cycle and while taking 100mg Utro vaginally like I always have done. It shows a huge drop in my P level and I am absolutely sure now that it's that that has tipped me over into Urticaria, because the balance between the two is just totally out of whack (841 and 16). I actually have had a hunch that my ratio is off ever since I started on HRT in April 2021 and that that was behind the weight gain and constipation. It led me to making repeated efforts last year to lower my Lenzetto but I just couldn't do it without getting side effects and I suspect now that the issue is in fact that my Progesterone has just never been high enough for the amount of Estrogen I need to feel well. Just to also add, I know from a blood test I had done in 2018 pre entering peri menopause that naturally both my Estrogen and Progesterone levels were at the very top of the range, which for Progesterone would be circa 75nmol.
I feel like it's a bit of a Eureka! moment... just such a relief to see something that I internally felt to be true. The question now is what I do about it, and I would really love to hear anyone's opinions or thoughts on this. I just cannot tolerate taking more Utro, even vaginally - 2 tablets just makes me a zombie the next day. So from what I can see my options are either:
1. Try using my BHRT lozenge on top of the Utro for the 12 days and hope that is enough, but because I am having histamine problems at the start of my cycle too, I suspect it isn't going to be (which isn't a surprise now that I know my P is 16 at luteal... it must be almost nothing during the first week).
2. Try taking 100mg Utrogestan vaginally continuously throughout and hope it doesn't prevent ovulation
3. Try another form of Progesterone like a synthetic one (I know absolutely nothing about these).
I really don't feel like I want to try the Mirena, I'm too nervous about not being able to take it out quickly enough.
Would really love to hear of anyone's thoughts or opinions... xx
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Interesting gilla. And as you suspected.
Is it worth trying to reduce the estrogen now you know this for sure??? Rather than trying to retrofit more prog?
At 16 nmol... It's unlikely you ovulated that month anyway. My private blood tests say over 30 defo means ovulation. It's a grey area below 30. So maybe stopping ovulation wouldn't be too bad??? I'm actually thinking it might work for me as I'm getting bad pms.
Is the 25mg bhrt a dissolvable lozenge??? I take 10mg troche. Couldnt tolerate any more.
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I’m sure I read somewhere that taking utro throughout might just make you spot randomly. So in that sense it might not prevent ovulation. I’m sure someone on here said it wouldn’t. It might be worth a try to have a go at utro throughout. As you know you can tolerate it (the lozenge is another unknown I guess) so taking utro in the first half may take the edge off the estrogen. You could see how that goes initially and always supplement with lozenges if you feel you need it?
I feel positive for you as it’s such a low reading there must be something in it. X
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I definitely ovulated Crispy as I test for it every month... but yes 15-30 is a grey area.
Yes it's a troche, 1/4 of the lozenge is 25mg. You couldn't tolerate more than 10mg, really? What were your side effects?
I'm seeing a meno specialist on Tuesday so will ask her about it all but at the moment I'm thinking 100mg Utro as normal and adding 100mg on top through the lozenge, reducing to 25mg for the first part of my cycle. That's a starting place anyway. I suspect the Meno specialist will only advise the standard "Utro, Mirena or Provera" which doesn't leave any options if you can't tolerate synthetic Prog or more than 1 Utrogestan. If only they could make Utro without the sedation side effect... sounds like money to be made for a pharma company!
I'm definitely open to trying to reduce my Estrogen - in fact I think it's needed - but I just know it will take me something like 8 months to reduce from 4 sprays to 3 for example. I really am so sensitive to drops in Estrogen and have to do it in a miniscule amounts, timed carefully every month or it's unbearable.
Thank you Scampi, I also feel positive about it ;D
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Gilla, I vote for option 2 ;D
Only because I was on utrogestan 100mg continuously and it did not stop me ovulating. It's also known that HRT isn't a contraceptive simply because it doesn't stop you ovulating at that level. I think the extra progesterone would help and also give you more stability.
If you find you get breakthrough bleeding you could do the 25 days on, 3 days off routine - scheduling a bleed for those 3 days. That is the 'old style' continuous regime so is tried and tested and kosher or whatever ;D
But that is very interesting theorising about the ratio between E and P. Where did you hear about this as an idea, in the first place? I've never heard of P even being measured routinely let alone the level mattering. But it is a v interesting theory.
I am feeling a bit better today, having reduced to 50. I also got my zinc and quercetin in the post and have started both. I will take a quercetin this evening before bed too. But often I can feel great until I lie down and attempt to sleep and then it all kicks off again...
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Make sure you always take the zinc with food joziel.
Very interesting Gilla, I wonder why your progesterone level is so low?
I’ve not got the knowledge to advise further but I do so wish you a productive journey through all these decisions you are having to make. xx
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Joziel thank you so much for that info I will certainly use it to get some. I know what you mean when there are lots of us to relate to, I’d hate to think I was leaving someone out!
That being wakened with a shock type sensation is the pits, I had that a lot….again as one of my side effects after the vaccine and Covid, things are settling, so it won’t always be the case but horrid while you’re in that place. I truly pray you all find peace v soon, it will happen bit by bit👍❤️❤️
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Joziel I think you're right about using Utro continuously being more kosher and I imagine the meno specialist on Tuesday will recommend the same.
In terms of the balance between E and P, I've read a lot of meno specialists talking about it, I think there is a growing number of them who extol the benefits of Progesterone as much as Estrogen and talk about how important the balance is. With regards to the histamine aspect and how it interplays with both E and P, I had read a bit in my general reading but also learnt a lot through Scampi here on the forum who has had a lot of difficulty with histamine issues. I have to be honest I never really thought it "applied to me" because starting Lenzetto was such a God send for me and in general I feel so good mood wise on Estrogen and figured that "histamine stuff" didnt apply to me. ;D. But after all the symptoms started in December and gradually got worse I recognised a lot of what Scampi had been talking about and what I'd read about, and how E and P affect and modulate it. We'll have to see how things go with the extra Progesterone! I'm glad to hear you're doing slightly better on the 50 today. I got my Zinc also today so we'll start together! I hope tomorrow continues to be a bit better for you.
Marchlove I don't understand it either - in two months it has less than halved!
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Morning ladies - Joziel how was your night last night?
I had another thought this morning off the back of what you said Crispy... I wonder if there's a chance I didn't ovulate and instead what the ovulation test picked up was just my general LH level, which (if I understand correctly) would be high anyway if I haven't ovulated? I don't really know enough about how these things work, but I was thinking - if I'm taking 100mg Utro vaginally and still the reading was only at 16nmol, I feel like my own level of P within that would have been in the category of "not ovulated"? Either that or using the Utro vaginally really adds zilch to your own levels of circulating Progesterone. I think I might do an FSH / LH test as I haven't done one in a while.
If I hadn't ovulated the last couple of months that would also potentially explain things, as I'll have zilch Progesterone and just a hell of a lot of Estrogen circulating in my body from 4 sprays of Lenzetto and my own little bit of E on top!
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Morning gill
Yes. That's kind of what I was getting at. I do t wa t to sound like a peri book, but as we move towards meno we'll prob start having more annovulatory cycles.
For me, my first ever blood test was recorded on an annovulatory month (I know because I get intense ovulation pain). My prog was 3 nmol. The next measure was 7. So at 16 you're certainly in the grey area.
I suppose what I'm saying is, whether you ovulated that month or not... There are probably more coming when you won't.
So far, I actually think the extra prog is helping me ovulate - simply because my dose is low and still stimulating estrogen receptors. That's my hunch. I'm also having terrible pms... In it now. So i think ill prob need to up my prog. I think stopping ovulation might help, for me.
The jury seems to be out on how much additional prog affects your serum levels. I just cant get my head around it. So I put less emphasis, on level and more on symptoms.
I think you know what you need to trial. Why not go for it in luteal phase first - add in the extra 25mg. U could then perhaps take the 25mg all month and only take the utro in luteal phase.
In terms of troche - I found anymore than 10mg I got extreme nausea and wooziness. I do seem extremely sensitive. I couldn't get on with compounded cream at all, but I'm tolerating onas fine. It's also cleaner ingredients, so I'm happy with that. I'm sure my clinic won't be :-*
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Morning Gilla, it’s great to hear you sounding upbeat!
Joziel, hope you’ve had a good nights sleep.
Have a great day ladies 🙂
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This is all very interesting. So I had a GOOD night last night :) By that I mean: I went to bed around 11.30pm and was just 'out' until 6am. I still woke up at 6am - without any jerks or jumps, just like it was time to get up. (It was still a bit early for my wake up time!)
However, I was still throbbing a little bit. It was much reduced from before this and on 62.5, but still happening a little.
So, I'm feeling good that this has improved and I actually managed to get some decent sleep. I guess I'm still worried that it is happening *at all*, but maybe it will continue to improve.
What is interesting to me, is this effect has been pretty immediate. Essentially, as soon as the estrogen has left my system. I don't know how that relates to mast cells being activated and histamine levels and other bodily processes - which I would think would take a lot longer to quiet down. So now I've no idea if all this has anything to do with mast cells and histamine at all, or if it isn't just some weird estrogen side effect.
I remained on the low histamine diet yesterday but am about to switch to my normal diet today.
I am going to remain like this now and see how things go. I might try (in about a week) to do the progesterone change, in case that leads to further improvement.
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That’s great Joziel. So glad you slept. It can be an immediate change in symptoms if you remove the thing that’s triggering your mast cells. Like infections trigger mast cells and when the infection is treated they calm.
Mine are a bit more trigger happy these days hence get set off for longer periods :'(
I had a couple of good days but still getting the chest flutters. I’m in climbing Estrogen phase pre ovulation which may be impacting (I have no E to remove as not on any extra!)
I’ve had my Mirena coil for 2 weeks now and it definitely triggered my mast cells further. Hoping things calm down. I got it as the last 2 I’ve had really shut the mast cells down. Had this one quite early in a flare and my body has reacted even to that. Wish I hadn’t had it now but would cause more issues to remove it. I’m guessing the hormones are in flux.
Hope you enjoy eating normally again Joziel and you settle on the new dose. Xx
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Interesting, scampi! Are you prone to other estrogen related things? Like heavy periods, bleeding, painful periods, breast tenderness and all that?
Have you thought about adding in more progesterone besides your Mirena coil? Only asking that because I came across this protocol from Lara Briden (based in US) who suggests adding in progesterone first during peri - and only if that isn't enough, adding in estrogen. Which would mean perhaps you could try some utrogestan by itself, not with any estrogen? See https://www.larabriden.com/rescue-prescription-menopause-perimenopause-feel-better-fast
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Not really, I never used to have those things but I have had the Mirena since 2018.
I read that article before actually. She has quite a lot of good things on histamine and mast cells. I tried utro orally a couple of years ago and made me horribly depressed. I’ve never tried it vaginally though so might be an option. I need to try and let this coil settle first before trying something else I think. Always my first temptation to try something that might work but often get in a pickle! My histamine was high and then I got a virus end of May whjch tipped me over. Then I had this new coil early to see if it would nip things in the bud but reacted to that change in hormones too.
I’ve read that the hormones in the coil reach their stable level after the first few weeks. So I guess I’m waiting for that stable level to happen and then my body might settle xx
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Joziel - that's the approach I'm taking. Prog only. There is no support for this via the NHS. Yet, it's an approach used in Europe and the US.
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Do you feel more settled on this now Crispy? X
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No!
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Sorry. Rubbish answer ;D. I've had a hard time settling in to it. My compounded cream made me sick avd woozy, but onas brand doesn't. So I've kind of restarted.
I'm full of symptoms this month, but it seems, like hrt, it takes a good few months to balance. Sigh. I e no question that I absorb... I'm getting every hormonal symptom under the sun this month ???
I'm still trying. That's why I don't yet shout it across this forum. But, I would point out it's a well followed path for peri in many countries. But, at this point in my trials, I can't recommend it personally.
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It’s true, many women swear by it. I really hope things balance out for you, it’s a good sign you aren’t feeling sick and woozy on this one though. I’ll keep my fingers crossed for you xx
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The day you get it right Crispy, will be the day you start a new thread just called “SHOUT” x
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Definitely!!! And you will get there. We all will :) xxx
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I've had an interesting realisation today. My slightly runny nose and watery eye are definitely back again, now I am on a normal diet. They have been pretty absent the last 6 days on a low histamine diet. However, they are not severe enough symptoms for me to eat such a restrictive diet ;D I'd rather have the coffee, chocolate and yoghurt and a runny nose, thanks ;D
The nighttime symptoms don't seem to be affected by what I eat.
No idea what all that means ;D ;D ;D
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I would very much eat a normal diet if it has little impact and you can live with those symptoms. You might find a normal diet and the lower estrogen level is all you need to find balance. Keep us posted x
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That makes sense Scampi and is what I essentially do now.
I don’t keep to a rigid low histamine diet, but I keep my estrogen supplementation low too, so I can sort or balance them.
On a good day!! X
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Just looking back over the chat and Marchlove you mention insomnia and
Antihistamines. I don’t know if it’s related but I’m pretty sure my insomnia started when I started taking fexofenadine at night along with my loratadine. Sorted the waking with severe palpitations but I have had such light sleep since. Can’t see a way round this though as I need them at the moment.
Was absolutely without an ounce of energy today, couldn’t move and my body felt broken, low mood, chest flutters and brain fog. Then took a loratadine in desperation at 5ish and felt pretty normal again within half an hour. It’s just crazy. I need several antihistamines per day at the moment just to function.
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I’d aim to take during the day certainly. Try and see what you trigger times might be and dose an hour before.
But try not to overdose, less is more.
I’m so sorry you’re having such issues with your new Minerva. Early days, but horrible weathering the storm. X
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I wish some doctors would come along and read all our experiences here. I feel like they would learn way more from listening to their patients than anything else sometimes ;D ;D
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Hey folks with palpitations, I found this interesting paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6932472/
When I did an ecg with my Kardia device, it often told me “sinus rhythm with wide QRS”. So I googled this in relation to HRT and found this paper. This is the relevant bit for me:
“ Women taking combined estrogen and progesterone therapy had the shortest QRS duration and those on estrogen alone had the longest QRS duration. Those taking estrogen alone also had significantly longer QRS durations than those taking no menopausal hormone therapy or past users of menopausal hormone therapy (Table 2). In addition, the QRS duration was significantly shorter in those currently taking combined estrogen and progesterone than either past users of menopausal hormone therapy or those taking no menopausal hormone therapy.”
So for me this lends support to the importance of progesterone in countering these effects of estrogen. And perhaps I just don’t have enough progesterone (for me). So I am going to double my utrogestan and we’ll see…
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I'm so glad there are people talking about the balance of prog/estrogen rather than just the benefits of one or other.
I'm striving for balance for my own natural estrogen, by using only prog. There is a lot of literature and anecdotal evidence which claims as you begin lower dose prog it actually upregulates your estrogen receptors. I have never found scientific papers on this - but maybe they don't exist.
Anyway. I am experiencing this. It makes starting prog very difficult. I'm thinking of upping my dose to help. So basically, your additional prog might actually make your estrogen work harder, until you use enough prog to reach balance.
This seems to relate to gilla and her original reasoning for starting this thread. Also, as we move through peri, our own prog will nose dive.
Balance I believe, is key.
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Crispy are you saying that the more progesterone you add, the more estrogen you will need.... ???
I think maybe I need something to mop up my estrogen anyways ;D
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No. Far from it.
It says your estrogen is magnified by the addition of some prog. That's maybe why you feel like you need more prog.
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Oh seriously? That's interesting. How does that work then!?
I'm totally stuck with what my next move should be. I don't really want to reduce estrogen more but I do want to stop these darn symptoms ASAP. If I don't reduce estrogen and stay at 50, and just do the progesterone switch (double utrogestan and stop desogestrel), I've no idea how long it's going to be before I know if that is helping and meanwhiles I could just be experiencing all this more.
And then if that doesn't work and I decide to reduce estrogen after all, would I stay at the double utrogestan?? Then i would be on a high dose of progesterone and pretty low estrogen???
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Oh man! I'm not sure joziel. Apogirs, I've not been following your story, so I'm not sure I can help.
I'm terns of the estrogen magnification thing. They say that if your estrogen is high, relative to prog, your body will protect itself by shitting down some estrogen receptors.
As you add in prog, your body then starts to reopen the estrogen receptors (as it's been waiting for prog) this makes you feel estrogenic symptoms stronger. It should die down, or you might need more prog to overcome it.
There. I think that's it. I'm just about to increase my prog dose as I think my low dose is stimulating the estrogen response, as above.
What are your symptoms??? You feel they're estrogenic???
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Ah.. So just skimmed a little. Are you on cyclic progesterone??
From what I've read this stop/start approach can keep triggering the antagonising of the estrogen receptors.
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No, I'm on continuous utrogestan 100mg and desogestrel POP (for endo suppression), plus now 50mcg patch.
And yes, I think the symptoms I'm getting are estrogenic. But my blood estrogen on the 50 patch was just 233nmol a couple of months ago and so I'm a bit reluctant to drop even further back :'( But maybe I need to do that to get rid of these symptoms and then can edge up very gradually over time again....
I don't think just waiting will help much because I was previously on this combo of things for 7 weeks and it was the same as it is now. So although I've only been back on the 50 for 2 days, I don't have much hope that things will settle....
With the endo and progesterone, I was supposed to be trialling doubling the utrogestan to 200mg continuously and stopping the POP. Just because I'd prefer to stop the synthetic progesterone if I can - I don't have any endo symptoms at the moment. But I've been a bit preoccupied with fixing these estrogen symptoms so I haven't gotten around to doing any of that yet...
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Ah OK.
Just out of interest - when you do continuous utro, do you ever take a break?? Or is it every single day?
I don't think I can help much, other than to say I believe natural progesterone avd synthetic progestin compete for the same receptors. So you might well get a better result switching solely to bio prog. ???
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I don’t take a break, I take it every single day.
But if I started to get problematic bleeding I’d probably take it for 25 days and then 3 days off as the old style continuous regime, just enough to schedule a bleed.
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I’ve been doing some reading and research during my sleepless hours ;D ;D
I’m aware that this fluttery feeling I have is key to what I experience. And that it is some kind of palpitation although not the skipped beat kind.
I remembered that my Kardia machine said it was “sinus rhythm with wide QRS”. So I looked that up on the Kardia site.
It said that one of the possible causes of this, is high blood pressure. Considering I’m lying here pulsing away when this happens, that cause seems very probable.
So I am now thinking that somehow estrogen is causing me to have high blood pressure, which in turn is causing these palps.
I don’t know what the mechanism is for this. I know that estrogen for most women is good for heart health and blood pressure but in my Googling I’ve found some accounts of women who react in the opposite way to it. And also for most women, pregnancy (v high estrogen) reduces blood pressure - but again there are some women who react paradoxically with dangerously high blood pressure. For sure I reacted in the same way when I was 21 and took the combined pill.
I’m reluctant to take high blood pressure meds to deal with an issue caused by estrogen. Taking meds to deal with the side effects of other meds seems a bit crazy.
Progesterone seems to potentially oppose this effect. So again maybe I should try doubling my utrogestan. 🤷♀️ So anyway I feel like maybe I’m a bit closer to working out what’s going on but no idea of the mechanism or what really to do about it.
Does anyone else feel that blood pressure could cause their issues? I know some people have migraines- they can also be caused by blood pressure?!
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Morning joziel
Have you got a blood pressure machine, did you take a reading? x
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The problem is that when it’s at its worst (most throbby) is when I’m lying in bed at night and more so when it wakes me at 6am. By the time I get my blood pressure machine set up and sit in a chair with arm elevated to heart level blah etc - well even if I felt like doing that I don’t know if I’d be getting a reading that reflects what’s going on in bed.
But I did have a higher than usual BP at the doctor a couple of months ago (145 over something) - she thought it was just white coat syndrome but I knew it was this HRT.
I didn’t say anything about that but I did a week of 2x daily monitoring. There were higher than usual readings again - 135/something several times but because some were also lower, the average was ok and it wasn’t enough for them to take action.
When I went to A&E it was 158/something.
But it’s not normal for me…. I’m 5ft 10 and weigh 9 stone 7. I’m skinny. I work out 4x a week and have always had a
Perfect blood pressure before. 🤷♀️
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You don’t need to get out of bed and sit in a chair. Just have the machine ready next to you in bed and prop the pillows up behind you and put one under the arm you use to take the reading.
Give it a go tonight x
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I think I'm a bit afraid of what the result will be :'( :'( The week of doing the 2x daily readings was ridiculous in terms of anxiety. Feeling the cuff tightening freaks me out.... I just don't know if it's worth the anxiety - considering I can't do anything about it beyond what I plan on next doing anyway.
Meanwhiles, I've found this paper people are talking about in terms of the balance between estrogen and progesterone and the importance of progesterone: https://www.sciencedirect.com/science/article/pii/S174067572030013X
I'm a bit worried about the importance it gives to a lifetime of ovulatory cycles, given that I've been on POPs most of my life - although I don't think the levonorgestrel POP I was on for most of the time actually stopped ovulation, so perhaps all will be okay!! Also not sure what the implications are for the bazillions of women using pills that do stop ovulation, it was glaringly silent on that subject.
On the plus side, it does make me feel that, even if the worst comes to the worst and I can't take estrogen, it will be beneficial for me to take progesterone.
And for now I guess it's given me hope that just maybe doubling the utrogestan will help. I'm going to try that starting tonight. I'll attempt to keep the patch at 50 whilst I do that but if things aren't improving in 1-2 weeks I might need to drop the patch back to 37.5. Phew.
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I'll read that later joziel. It'll be very interesting for me.
I genuinely believe my prog is really low because I did stop ovulation for years using the combined pill and then the pop. If it wasnt the fact hrt estrogen poisoned me, I'd never have sought alternative help and found out my prog was so low.
I just doubled my dose last night /this morn.
How old are you? What synptoms are you taking estrogen for???? X
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I'm 44yo. I had every menopausal symptom in the book.
I couldn't think, couldn't read or concentrate, couldn't put two words together or work, felt permanently jet-lagged. Night sweats. Flatulence, like old lady farts(!), constipation and a slow gut - chronic and despite fibre and all the obvious things tried. Heart palpitations of the skipped beat kind. Zero libido. Dry eye, dry mouth. Migraines (only had one since starting HRT in March when I would get them many times a week before.) Joint pain in hands, knees and hips despite normal x-rays and bloods. Inexplicable weight gain. Like I could eat a single apple a day or something and somehow put weight on, something really freaky was going on with the metabolism. And I couldn't see the point in looking forwards to anything. I felt like I was 80 and just wanted to sit in a rocking chair by the fire until it was time to die - it was horrendous.
Estrogen has stopped all that. Which is why I just can't go back there and I'm so stressed about these estrogen symptoms. The good news is they all went away pretty much at the 25mcg patch, so if I do have to go right back to that, hopefully things will still be okay as far as symptoms go.
The article doesn't imply that progesterone is low because we stopped ovulation, it's more that they believe that progesterone only really shoots up high after ovulation during the luteal phase. So if you stop ovulation, you stop that progesterone increase and your body from experiencing that. And their theory is that this predisposes women to bad health in old age, from cancer to cardiac events. It's only a theory though.
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It’s good that the 25 patch stopped all your symptoms because if you do have to go back you know you’ll be ok.
Just to say I have the exact same in terms of heart palpitations and being woken up with a jolt of fear and palpitations. It’s the histamine (for me anyway). I’m taking industrial amounts of antihistamines at the moment during this flare and it’s the only thing that’s truly minimised them xx
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OK, so I totally understand why you wouldn't want to eliminate estrogen joziel. It seems to have served you very well. Why did you increase from 25mg??? Is it an option to reduce to that now?
It does very much sound like you needed the estrogen but have perhaps balanced too far the other way - in the same way gilla is thinking she has.
Gill - have you started the extra prog yet???
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Scampi, I don't think my early waking is histamine. I don't often get the jolt or the anxiety, it's more that I wake up either because 'it's time to get up' (even though it's too early) and/or because I feel throbby.
Crispy, I had/have a Newson Health doctor who seemed to just assume from the start that I would need a high level - I think because I'm young still. She did know that I had to increase gradually because I had a history of migraine, so I was started at 25 for 2 weeks, then told to increase to 50 (whatever I felt like) and then after 6wks to increase to 75. There was the expectation that I would probably need at least at 75 or 100.
Even when I had my follow up at 3 months and I told her about all this and my trip to A&E on the 75 patch (after which I reduced to 62.5), all she said was that I should increase very gradually and feel ready to cut patches into tiny bits to titrate upwards. I think probably because my blood estrogen was only 233nmol on the 50 patch. And Newson tend to want you around 400.
It was weird because I told her that I'd felt better immediately, as soon as I'd started the 25mcg patch, and it was like she didn't quite believe me - she said 'oh, it was probably the testosterone' that was making me feel better. But I hadn't started the testosterone then - I waited a few weeks before adding that in - so it can't have been that. I didn't say anything because it seemed silly to argue about that and a bit irrelevant at the time.
But the thing is... Having read that research article I posted above, it seems that body identical progesterone can really help bone density too - it's not all about estrogen. The article did make me wonder about all the research I've been reading about estrogen levels and bone density, where they don't even mention if the woman is on progesterone and what type of progesterone (synthetic or body identical) when they were looking at the bone density changes. Maybe some of their results were due to the progesterone and not the estrogen...?? So I feel a bit better about things if I can't stay at 50.
Plus, perhaps I will just need to be stable on a low dose for a good length of time like even a year or so, before being able to try an increase again. Maybe it is something about needing more estrogen receptors to come online again....
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Joziel- reading your last post I relate to it so much.
I feel stable on 0.25estradiol and 1mg estriol bi:est cream.
So, yes when you say initially you felt good on the 25mcg patch I can see the resemblance.
The progesterone is the issue with me. After so much trial and error, I now very much feel that I need the progesterone, but it’s a question of my body slowly getting used to it again (I’m 65) and very very gradually increasing. On a very low dose of estrogen this is easier to do.
Great thread, thank you Gilla, hope you’re ok tonight xxx
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Marchlove, I see. I'm okay on progesterone. Fortunately that seems to be a problem I don't have, whether synthetic or body identical I seem pretty immune to anything it does - except sometimes I think it makes me constipated, but that's probably just when I don't have enough estrogen to balance it out.
I'm about to try doubling the utrogestan and I'm a bit worried about doing that and also reducing estrogen, so I'm going to try to stay at 50 for at least another week (at least I'm getting some sleep at 50, unlike 62.5) whilst I double the utrogestan. If I still have these issues after a week with double the utrogestan, I'll reduce estrogen to 37.5. That's my plan anyways....
Gilla, not heard from you in a while (or maybe we have all just posted loads ;D ;D ), how are things?
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Good plan. Could you perhaps start by slowly adding some more Utro (pin prick and squeeze some out), then you might remain stable on your current estrogen dosage.
X
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☹️🤷♀️ arrrggg
I doubled my utrogestan tonight and it’s a really bad night. Throbby and tingly and the fluttery palps and can’t sleep properly.
It’s probably just a coincidence that it’s especially bad. There was a time I forgot to take it at all until about 3am and it was equally bad so I don’t think it’s the P causing all this.
But it does mean it’s not going to be an easy or quick fix. I’ll carry on with double the P and stop the desogestrel but I’m probably going to have to reduce from 50 estrogen.
The other thing to say is that I’ve
Been so exhausted I’ve had to sleep mid afternoon for a couple hours these
Last two days. It’s been fine. No throbbing. No palps. So this is something to do with night time and circadian rhythm. It’s not just sleep.
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How horrid.
Have you done the 24 hour saliva cortisol/Dhea test? You’d probably have to do the Dutch Test (top of the range one), which does a night time waking test as well.
X
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Hi - no, I haven't done that or heard of it! I think before doing anything like that, they would take me off HRT just to see if I become fine again. If so, it is somehow being caused by the HRT....
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Morning.
Joziel - I really wonder if you'd be better dropping your estrogen first. You said you were instantly better on 25mg...so why not do that first. You can go back up if a, prob. Gilla is trying more prog as, she knows, she cavt drop the estrogen.
All the changes at on e will throw your body into turmoil. Better to stick with one and change the other x
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Crispy, I've just this morning also dropped the estrogen to 37.5. (This was difficult because I didn't want to waste the 50 patch I was wearing by taking it off early, so I had to measure the patch whilst it was stuck to me, work out how much to cut off and draw a line and then peel up the end and cut it off whilst the rest stayed stuck ;D ;D ;D ADVANCED PATCH CUTTING OR WHAT!? ) It will be easier when I replace it because I can use one and a half of the 25 patches I have, which is much easier.
Anyway, now I plan to give things time again to settle. With increased progesterone to oppose estrogen, calm things down, help sleep and everything progesterone is supposed to do, PLUS decreased estrogen, hopefully I have a chance.
I don't remember this happening on the 25 patch, no. But I was only on that patch for 2 weeks (at the instruction of the Newson doc). So I don't know what would have happened if I'd stayed on it longer.
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;D ;D I do random things like that too.
Like I said, I just wonder if you should change one thing at a time, otherwise you don't know what's causing what. These are both big changes.
It really is frustrating that the private sector appears to be generalising on dose almost as much as the nhs. What is the point?!? Have you spoken to your newson doctor about this reaction???
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Yes, I talked to the Newson doc about it - and also 2 other docs. The best thing anyone could suggest was reduce estrogen, stabilise, increase very gradually. No miracle solutions. The Newson doc didn't suggest I reduce from 62.5 either, just told me to increase gradually - I think she wanted me to get to 75 at least. But.... forget that. I might try to request my next appointment with a different doctor there to get another perspective on it.
My plan is to try everything within my powers in an experimental way and then get back to them and tell them what I've done. Otherwise I'm just paying money to be told to do stuff I would/could have tried anyway. I get the thing about not changing things at once, but really with 3 hours sleep a night I'm in crisis mode now and not in 'experimental conditions' mode ;D
I did also have a crazy idea that, since this is happening at night, what if I somehow took my patch off a few hours before bed or in the evening so the estrogen could get out of my system before night time. I've tried that a couple of times and things were *better* although not like they used to be, before HRT. I also don't know how I can do that, in the long-term. But - it could be that my levels are too high at night only, since the patch pumps out the same amount 24/7.
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Morning all - just thought I would give a quick update.
I had the Xolair injection on Friday PM. My specialist warned me that it can take up to 4 months to work, or on average 6 weeks. Well, it has been nothing short of a miracle. Woke up Saturday morning with hardly any Urticaria, just a few wheals when I searched for them. Same Sunday. This morning there's nothing at all. So blimmin' relieved and happy!
The challenge is that Xolair isn't a "cure" - it lasts for 4 weeks (the injections are monthly) and if you stop treatment, it comes back. And it's not available on the NHS and privately costs £1,000 for every injection :'( Thank God I am fortunate to have been able to get 4 months of treatment on my private health care, but that's all they will pay for. So really it's just given me some breathing space from the misery to try to fix the issue.
For the last 5 nights I have been taking 100mg of the BHRP lozenge on top of using 100mg Utro vaginally. I'm very pleased that I've been able to tolerate the lozenge fine (and find it interesting that I do considering it's the same ingredient and dose as 1 Utrogestan - either I don't absorb it as well, or it's something specific to the ingredients or method in Utro that makes it so sedating vs the Progesterone itself). I have also managed to drop to 3.66 sprays of Lenzetto (taping over the dispenser by 1 third) so far with no side effects. Tonight is my last night of taking Utro this cycle so I plan to drop to 50mg lozenge and continue to take that all the way through until the Utro days when I'll increase it to 100mg again. This is because I did a bit of investigating / research and barely any Utrogestan is absorbed systemically when you use it vaginally, so I don't think that's going to help me. My hope is that by the end of Sep I'll be able to drop to 3 sprays of Lenzetto and if the Prog works I think this combination should make my ratio better. If ithat doesn't work, I have no clue what's going on!!
Joziel I'm sorry to hear you've been having such a rough time. What's so confusing is that the symptoms of high and low E are so often the same. The "it's time to wake up" feeling you describe (even though it's not) and the waking with a jolt were 100% symptoms for me of low Estrogen. I'd wake up at 3am with this jolt feeling like it was 7am but it wasn't. As soon as I started Lenzetto it vanished (I read it's because low estrogen causes adrenaline surges). I don't meant to confuse you with that as it sounds like you're on a journey to lower and not increase, it's just such a pain that things are so confusing for us with symptoms. Sending you much love - severe insomnia like that is soul destroying xx
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Thanks 😊 and really glad things are going well albeit for 4 months for you! What is Zolair and where did you hear about it?
I had a good night last night. Slept till 7.30am. BUT still a bit throbby. And fluttery. We’ll see what happens…
I don’t think it’s low estrogen for me because everything got insane and I ended up at A&E at 75 and things have improved as I’ve reduced. The key things for me are the fluttery palps and the throbbing or high blood pressure.
Let’s hope we all figure something out!
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Gilla - that's amazing about the jabs. Not so much so about the cost!!!
So not at all available on nhs??? That's quite ridiculous, considering they work. So, what are they??? Industrial strength antihistamine???
I hear you on it not being a cure, although it does give you some breathing space. Also... Your body can change itself. I've found with allergies sometimes they just disapear.
Sounds like you're also on track with your estrogen /prog trial. So you can take an extra 100mg prog lozenge with no side affect???? My god. 15mg makes me sick and woozy. I am soooo sensitive.
Interesting indeed. They claim it should only be oral that causes sedation, because of the metabolites. Vaginal and sublingual should not... But you use utro vaginally, right??? Anyway, I think its all trial and error. I could not get on with my compounded cream at all, but I am having a totally different response to a branded one. ???
Onwards and upwards. I hope you find your cure x
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Crispy, yes, it's crazy. I can't tell any difference in terms of how I feel from 100 to 200 utrogestan. I can't tell anything from 0 to 100 either. The only possible side effects are that it slows my gut down a bit and that can lead to constipation - estrogen offsets that, but clearly I have to be careful increasing that! I've also been on desogestrel and levonorgestrel without any probs. I seem pretty immune to all progesterone related stuff. Just the estrogen, I'm very very sensitive to...
Gilla I just looked up Zolair and it sounds similar to what my dog gets! She has year-round allergies and is on a monthly injection called Cytopoint which is Lokivetmab. It's a monoclonal antibody. It works brilliantly for her and is supposed to be very safe without any side effects - but it costs about £95/month. (Which I guess is better than £1000 ;D ;D ). We got it on insurance for a year but now the insurance has run out. Fortunately her immunotherapy is starting to work now and she only needs a shot every 3-4 months.
Maybe you can calm your immune system down and research how to do that, and perhaps you could space out your Zolair shots to be a couple a year, which could be affordable....?? (If you budgeted?)
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Progesterone is known to reduce allergenic reactions, hence, it is possible it may be coming from too high of a dose of estrogen, or even an unbalance of hormones. Try reducing the Lenzetto a little and see if there is a difference.
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It is indeed great news Gilla :) must be a blessed relief for you. And as crispy says, the body and immune system does change and as you’re supplementing with P and reducing E in the meantime, you may find by the time the injections end you’re in a totally different place.
Isn’t it strange how differently we all react to progesterone? And I’m interested in why the lozenge is so different to the same dose of utro in how you react to it.
My Mirena seems to be settling and I feel like myself mentally again after just over 2 weeks. Unbelievable really. With that and the huge amounts of antihistamines I’m taking things feel a lot better. When things have settled further I’m planning on seeing a functional medical doctor to explore my genetic tests and supplements to try and make sure my histamine levels and hormone levels remain balanced in the future.
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Hi Gilla
That is good news regarding the xolair injection and as you say if nothing else it buys you some time to figure things out.
I used to have asthma and histamine reactions to all sorts of things but thankfully things have settled down. I put this down to my supplementing first with pregnenolone and now with Dhea.
You do have to be careful with Dhea, not take too high a dose, make sure your cortisol/Dhea ratio is balanced and you can only do that with testing.
So I thought I’d have a look for you and see if there was any research regarding urticaria and Dhea and I came across this
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170459/
Hopefully it might offer some clues x
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So pleased to read you have had such success with the injections Gilla but a real shame you can’t get for as long as needed on the NHS. I hope you can figure this out during that time though, fingers crossed.
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Thanks everyone, much appreciated. A bit of a curveball today, as my specialist contacted me to say I had tested positive in the BHRA test (Basophil histamine release assay). It means I fall into a subsection of less common condition called Type ll2 chronic urticaria. It's an autoimmune disease involving IGg antibodies (different from IGe which is the usual) and is usually accompanied by other automimmune conditions, most common of which is hypothyroidism. The prognosis I read online doesn't sound great in terms of long term recovery, although the confusing thing is that a positive test result is also an indicator of NOT responding at all to the Xolair injection, which I very much have. So I'm just hoping they've somehow got it all mixed up and praying that the four months of Xolair fix it long term! It's such a relief to feel well again, I'm over the moon.
An interesting thing I discovered is that if you Google IGg antibodies (which of course I did ;D ) there's a bunch of Covid related stuff that comes up, as it seems to be the antibody involved in fighting viruses. It does make me wonder again about the booster and then Covid itself.
Crispy, it is very frustrating re the NHS. No they're nothing like antihistamines (in fact people with my type of it don't respond to AHs, which I can vouch for!!). It works on a specific antibody and it seems to be an expensive med for the NHS to buy, so they don't offer it. Great! Yes 100mg lozenge no side effects at all, but even 1 Utro tablet orally and I'm out of it for two days. Still TBC how much Prog my body is actually absorbing from the lozenge though, will be interested to see on next month's blood test. Crispy do you take your troche twice a day? I read some studies showing that P levels drop significantly 12 hours after the troche so they recommend splitting it. I did so today, no side effects still. I had a bit of a Google and came across a few specialists (including Lara Briden who I think was mentioned earlier in this thread and who I've rated highly for quite some time) mentions that a troche is essentially the same method of delivery as vaginally in terms of ingesting it through a mucous membrane, as opposed to via the digestive system like Utro - hence less sedation.
Marchlove, that is a very interesting link. I have my cortisol/DHEA test here but haven't yet done it, I'll do so tomorrow! Does anyone know if you can get DHEA supplements? I last had my DHEA tested in May 2021 and it was at the bottom of the healthy range.
Joziel, sounds like it's definitely not low E related for you then, you know your own body. It's so frustrating the symptoms of both are so similar.
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Hi Gilla
That’s interesting regarding the IGg antibodies as opposed to the IGe.
I think it would be a good idea to ask for copies of all the tests you’ve had done so you can look at the ranges.
As you’ve responded to the Xolair it could be that you do not have high antibodies but are just out of range.
Was your cortisol ok when you did the test in May 21? Did you supplement Dhea then?
When I was searching earlier for you I did come across covid vaccine induced urticaria which I suppose could either be because of the spike protein itself or fillers.
You can buy Dhea cream online from the states or you can get it privately in oral or troche. The problem with the troche would be that any subsequent saliva test would be inaccurate. I take 5mg orally every other day at the moment.
In terms of the test I’d wait a few days until the weather cools down as taking it now could effect the cortisol result.
X
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Gilla - how interesting you can take the 100mg lozenge, no prob. I am very jealous >:(. 50mg lozenge and I was so wired with anxiety I was doing jumping Jack's. Along with extreme nausea avd dizziness.
Hopefully I absorb well 😁
Oral gives metabolites which no other form gives. Because of the 1st liver pass.
I'm now on 10mg troche and currently increasing my cream. Yes, I do twice a day. I do think I'm more stable that way.
The autoimmune test is interesting... Time will tell for you I guess.
I was given dhea as a cream combined with Testosterone. I'm not currently taking it. That was from Marion gluck clinic.
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Can someone explain what a troche is?! 😂
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;D ;D joziel it's another word for lozenge - they're kind of like milky lozenges that you put between the gum and the cheek or under the tongue and they dissolve. It is a weird word!!
Marchlove thanks for the tip - I'll hold off on doing the test till later in the week. Thanks for the info on DHEA - no I've never taken anything or know anything about it! Will wait to see what my test result says.
Crispy that's a shame you can't tolerate more - good that you can tolerate the cream though, how many mg is that?
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;D also called a lozenge. Waxy Square, well, mine are square, that melts bucally in the buccal area of mouth. I believe you can get vaginal troche too.
Google how to pronounce troche... I got hooked on that. 🤣🤣
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Oh. Gilla... My compounding pharmacist said under the tongue will absorb more like oral... So you might be best sticking to gum and cheek.
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Oh right, I know what you mean now ;D
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I had another pretty good night 🤭🥳 This is a new record, two good nights in a row…
The only thing remaining is this slight throbbing. I feel it mostly in my hands. It doesn’t last as long as it used to and it’s not as intense. And I think it’s no longer causing the palps, which is why I can sleep. But it does happen occasionally during the night.
I’m hoping it is going to go away totes. As I don’t want to be working out if it’s high blood pressure and what’s causing it etc…
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Gilla- I find it’s best to do the test on a Sunday when things are usually a bit calmer and you can pop in the post on the Monday.
Joziel- that’s good news re your sleep.
xx
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Marchlove is that for bloods or saliva? Medi checks tell me same day to post samples back? I guess if it’s the cortisol saliva across the day, that’s a next day post isn’t it? I haven’t done one in a couple of years because that one was perfect results. It took 6 years of really bad cortisol results to get it right.
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Hi ATB
That’s saliva (4 times a day), so I freeze them as soon as collected then post the next day.
The blood test only gives you a measurement for that point in time, which might be fine when you take it in the morning, then drop too much in the afternoon and then rise too much in the evening. Or totally the opposite of that! Everyone is different.
Yes ATB, it’s a quite a journey getting it right. Mine was pretty perfect in February then after getting covid in May my cortisol plummeted yet again.
X
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Oh I’m sorry to hear that Marchlove, I know how hard it is to get it right. I really hope it’s short lived for you. I’m hesitant to say in case I speak too soon but I don’t think my recent covid affected cortisol or sex hormones, at least I haven’t noticed anything- yet
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Thank you ATB. I think you’d have noticed by now, so hopefully you’re through it unscathed. x
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The only difference is both periods since are 4-5 days earlier than they should be. Did I read somewhere else that’s common?
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Hi
So since I got covid 3 weeks ago my anxiety, fatigue, jitters have all got worse. Initially I blamed me starting the birth control pill ...but there's no way it's that after looking at the timeline.
After reading all your messages here I've just bedn chemist and bought loratadine antihistamines.
Could I benefit from the other supplements you mention...quercetin? DAO? I believe these are natural?
I could do with some help with this covid aftermath.
Thanks xxx
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Hi Vicky
None of the symptoms you’ve said you have sound like histamine symptoms.
The main ones are things like
Runny nose
Sneezing
Red itchy eye
Rashes/hives
Itching
I think you are possibly on the wrong track about all if this, but please tell us if you think might be if relevance to you, so we can help you. x
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Histamine is a funny thing though as I have mast cell and histamine issues and I don’t have any of the above symptoms. When my histamine is high I get hot flushes, anxiety, jitters and really irritable, stomach pain. I’ve had hives once after my first covid vaccine but aside from that no skin issues.
I guess it’s one of those things that can affect people so differently. Xx
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Oh ok marchlove....
My ears pricked up after scampi sent me the link to the dr she sees..Dr Tina peers . Its got the symptoms on her page ....and it resonated.....
She specialises in hormones and histamine intolerance....
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Hi scampi yes that's what I mean....same as you describe. I too don't have allergy symptoms....no hives,, runny nose etc...it was only when I read your drs page it just rang a bell
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Hi Vicky
You and I have spoken of this in messages between us and I understand your frustration and searching for answers.
Have you thought any further about seeing a nutritionist/naturopath so that you can explore these issues and your symptoms further?
I do feel this will be of great benefit to you and help you focus objectively on a way forward. X
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Hi marchlove
Yes I did Google some in my area but haven't got round to booking anything yet.
It was only when I seen scampi link thst made me wonder really ....
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It’s good to wonder Vicky, so follow this thread.
None of us here have answers, we’re all just exploring and exchanging experiences, with the hope of helping ourselves and others.
Sleep well xx
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Vicky if you want to explore histamine thoroughly, you could try a low histamine diet. If you search for that you'll find my thread from recently when I did it for a week. It made no difference to me and I don't believe now that my symptoms were due to histamine but think they were instead due to too high estrogen (for me). But it would be best to do that and is what Dr Tina Peers recommends - rather than just taking the supplements and the anti histamines. That bit is easy but may well not work by itself.
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Thanks both....something to think about x
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Hi all
Wanted to give a quick update to this thread regarding the Urticaria and also ask a question on my DHEA/Cortisol test results which I just had back.
My consultant was quite clear with me that my CSU (Chronic Spontaneous Urticaria) is Autoimmune in nature when it goes on for longer than 6 weeks and is every day like mine, as opposed to an allergic reaction. I had a blood test which confirmed this. However I am quite sure that hormonal fluctuations (especially any increase in Estrogen) does have an impact on flare ups. My first Xolair injection worked really well and I thought i was cured, but it came back after two weeks and then the second injection last week did nothing. I start Cyclosporine in a week's time, which is a nasty immunosuppressant medication, but quite honestly i would take Arsenic right now if they told me it would work. In daily agony and not able to work etc. Fingers crossed it helps!
I finally had my DHEA/Cortisol results back and things look a little strange. Does anyone here (Marchlove?) know much about DHEA and Cortisol?
- My cortisol levels are all under the range (this was two weeks after I stopped low dose steroids which I'd taken for 10 days)
- My DHEA is ok in the AM but too high in the PM
- The Cortisol/DHEA ratio should be between 46-77 and mine is only 17.
Does anyone have any idea what that means?!
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I don't Gilla, but I am following your experiences with interest in an attempt to understand ideas for myself and I hope you get some useful input! :)
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Hi Gilla
I’ve been wondering where you were and how you’ve been getting on.
Can you post the actual measurements for each point in the day, with the ranges used, as each lab uses different ranges.
Who did you use to do the test?
If it was a blood test I’ve not ever done it that way so won’t be able to help so much.
X
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No it was a saliva test :) It was done through Healthpath.
Annoyingly you can't post images on the forum but this is what the results say:
Cortisol - it doesn't give the timings I did them but they're from first thing in the morning to night:
Sample 1, range 3-16: 3
Sample 2, range 9-26: 8.7
Sample 3, range 5-19: 6.5
Sample 4, range 3-9: 2.5
Sample 5, range 0.5-4: 0.4
DHEA
Sample 1 (AM), range 0.23-1.38: 1.01
Sample 2 (PM), range 0.13-0.69: 1.09
Cortisol/DHEA ratio, range 46-77: 17.5
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Hi Gilla
I’m going to have to think about this, but yes your cortisol is low, especially in the morning.
Can you remember the approx times of the different tests ?
How did you feel physically and mentally on that day?
You are being very brave looking into all of this. I’ve been there and the only thing I can say is eventually it starts to pay off!
It’s a real incentive to others to follow your story.
X
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I think this is interesting Gilla, the connection between low cortisol and CU.
https://pubmed.ncbi.nlm.nih.gov/26905640/
Try not to worry, mine has been far lower than yours, as recently as two months ago!
X
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Marchlove - gilla has used Healthpath, which was the same company I used when you looked at mine. If that helps. X
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Hi Gilla
I want to start by saying that a lot of ladies in peri and beyond have some degree of adrenal (HPA) dysfunction.
Many are unaware of it and put everything down to sex hormone imbalance.
Anxiety is a key issue with HPA dysfunction, but unfortunately can be a symptom of both high and low cortisol, so the only way to know is to test.
What we don’t know is what your cortisol/Dhea was like earlier in the year and post covid infection, so it is difficult to pinpoint an actual cause.
In fact one potential cause now is you recently stopped low dose steroids, and the negative feed back loop might not yet had time to readjust.
Or it could just be an ongoing stress response to your chronic Urticaria.
So, morning cortisol should be at the very top of the range.
Noon should be upper quarter, lower part.
Late afternoon should be midrange.
Bedtime should always be at the bottom of the range.
Dhea and cortisol should work in balance with each other. As cortisol goes up, Dhea goes down.
When cortisol falls, Dhea makes a last ditch attempt to rise…then falls.
This is what I think is happening to you with your pm rise in Dhea.
Low cortisol can result in reduced cellular absorption of certain hormones, reduced thyroid receptor response, and low pregnenolone, progesterone and aldosterone. Testosterone along with Dhea levels fall with declining cortisol levels, but which comes first is highly individual.
Clinical manifestations can include estrogen dominance symptoms (relative to progesterone) and blood volume/pressure issues.
So what to do about it???
Of course, the obvious stress reduction, rest, relaxation techniques are paramount, along with regular meals, do not skip breakfast (which should be high in protein- eggs a good choice) and adequate sea salt twice a day.
But bigger guns than this are often needed.
It really depends Gilla on how you would like to proceed?
The best solution is to work with either an endocrinologist or a good functional practitioner (the disadvantage here though could be that they are unable to prescribe).
That said an endocrinologist will often jump straight in with the big guns and prescribe hydrocortisone, which is often not necessary if you have adequate pregnenolone and progesterone throughout the month.
I have had low cortisol issues for a number of years and have been able to get on top of it without using HC.
There are a few supplements that are very good for low cortisol. Namely, vitamin c(don’t start too high and the B vitamin Pantethine. Also I have used Thorne adrenal Cortex (don’t use glandulars) with good success.
It’s also important that you avoid, for now, supplements that can lower cortisol, such as Phosphatidylserine, zinc and holy basil. All good supplements and I actually take zinc now with my evening meal, but not good for you right now.
Lastly, there are two good books I would like to recommend-
‘Stop the Thyroid Madness’ which has 2 excellent chapters on adrenal dysfunction
and
‘A Practitioners Guide to Physiologic Bioidentical Hormone Balance’
My cortisol and Dhea nose dived after getting covid in May, this doesn’t happen to everyone, it depends how good your reserves are and in some people they actually increase. The only way I could tell was by testing yet again. After Christmas when I tested they were pretty good. So you can see how quickly things can change.
It’s awful to have to deal with so much all at once Gilla, but take heart, as knowledge is power and will help you win through.
Please let me know if there is anything you wish me to clarify.
M x
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Oh thanks Crispy, I’ll have a look at yours again.
I did think there advice was pretty useless, so I recall! X
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Bumped for Louise1976.
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Wow this is really interesting. How are doing now Gila999 with your hives? I'm sure mine is linked to hrt. This post was bumped for me in relation to something I posted about my hives
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I'm getting hives too.
First started when I was on Evorel Conti patches, thought I was allergic to the adhesive so nurse at GP's switched me to Lenzetto and micronised progesterone, still got rashes, stopped using, rashes went away. Went back Lenzetto and progresterone tablet this year and initially okay, but gradually rashes have come back. Nurse said I'm probably 'estrogen sensitive'?
I would stop taking HRT but I have osteoporosis and take it mainly for that.
I also am hypothryoid (which developed around perimenopause).
I think mine's linked to autoimmune disease as I also have ulcerative colitis.
Hormones are very tricky and we're all different and what works for one won't work for another.
Isn't high estrogen levels dangerous? I don't know what to do. I'm scared my GP will take me off HRT. I already have fractures. Sorry for wittering on.