Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: RebJT on November 25, 2022, 09:03:21 AM
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Hi Ladies
Not posted for a while (you can find my varying degrees of demented previous posts here!)
After a hellish time of it, I FINALLY settled on sequential HRT, and went from dreading utrogestan bit to counting the minutes til I could take it, as I felt so much better at last in second half of cycle (symptoms used to be other way around, feeling cruddy once on utro, but lately it's the utro free days that are just the hardest). I've been on some form of sequential since I was 46 /47 post polypectomy and D&C and I've now just turned 50. I was suffering very heavy bleeds and terrible problems with histamine and anaemia, it truly was hellish. I'm under Dr Tina Peers, she's lovely.
So I fixed the iron, decided against a coil (was thinking Jaydess, but decided against), had histamine under control, was tolerating alternating 200mg utro orally one day, and 100mg vaginally the next for 14 days, and was on four pumps of oestrogel and feeling like my old self. Medicinal herbs (not for everyone, but worked for me) added on top around my bleed alongside all the rest, and I had a scant bleed, was virtually symptom free. Lost weight, exercising, back to working at full capacity, all good. Felt utterly and totally FINE.
Then in May I got Covid ....
Dr Peers says Covid (and some say the V also) affects the ovaries. This would seem to be my experience, I had hellish uterine and ovary pain, dreadful period during infection, and I've never been the same since.
Regardless of how shitty things have been, I've always been 28 days on the nose (unless I've been experimenting with some new HRT, and my cycle always resets afterwards).
For the last four months I've had a 23 day cycle and the heavy bleeding is back (I just can't have this, iron is a massive life wrecking issue for me). I've had several private scans and they literally cannot find anything at all, totally normal (I use those baby scan places, really nice people, and not expensive, about £70)
My question is how do you know if you are ready for continuous? Having gone from hating utrogestan, I'm now literally counting the days until I can take it and finding it stops dead the jittery feelings, the histamine symptoms that are now peaking at day 5 - 7 ish and the horrible scraping, tight, painful uterine pain, I sleep like a log, I no longer bloat or gain weight through utro days, I just feel so much better on it than not on it, I'm wondering if I'd be better trying continuous and stopping the bleeding all together? I'm wondering whether my dominant issue is now a lack of P??
According to Louise Newsom any woman who has been on sequential for at least a year, regardless of age, can switch to continuous https://www.nhmenopausesociety.org/resources/ten-tips-for-prescribing-hrt-remotely/
I've also read elsewhere on her site that you'd tell quite quickly if the endometrium wasn't stable enough for continuous (due to the whacky FSH stimulating the lining erratically) and switch back to sequential, but having searched MM, I see that some women have worse heavy bleeding on continuous, which is what I'm trying to avoid.
I also read here that there's a kind of adapted continuous regime where you could come off utro for a short time every so often, and have a withdrawal bleed to ensure the lining has fully come away?
So frustrating, as I worked so bloody hard to get myself sorted out, and was finally, finally feeling teh benefits of a steady HRT regime and now it's all gone to pot post Covid. I'm on my sixth cycle post infection, and still having the same issues, and wondering whether to tough it out another one to see if I get back in synch on a 28 day cycle, or whether to just chuck in the towel and try continuous.
Also, Dr Peers told me that if a bleed comes early on sequential, to stick to the calendar not the bleed, but I've had to readjust my day 1, as no matter what I do, the bleed turns up on day 23 or 24 if I count from first day of bleeding. These short cycles don't seem to be a blip, I don't think, unless it's covid still and might settle?
Thoughts?
Thanks
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PS Newsom who I mention above is referencing Panay's "The British Menopause Society & Women’s Health Concern 2016 recommendations on hormone replacement therapy in menopausal women"
In the section "Routes and Regimens" quite a way into this document https://journals.sagepub.com/doi/full/10.1177/2053369116680501
He says:
A recent systematic review by Stute et al. (2016) assessed the impact of micronised progesterone on the endometrium. Forty studies were included in the systematic review and it concluded that oral micronised progesterone provides endometrial protection if applied sequentially for 12–14 days/month in a dose of 200 mg/day for up to five years. In addition, vaginal micronised progesterone may provide endometrial protection if applied sequentially for 10 days/month in a dose of 45 mg/day at 4% or every other day in a dose of 100 mg/day for up to 3–5 years.
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After a minimum of one year of HRT, or one year after the last menstrual period (two years in women with POI) women who wish to avoid a monthly withdrawal bleed may attempt a switch to a continuous combined regimen which aims to give bleed-free HRT – this will also minimise the risk of endometrial hyperplasia. There may be some erratic bleeding to begin with, but on persistence with continuous combined regimens 90% of women become bleed free.
Alternatively, women can be switched to the tissue selective agent tibolone.
Progestogenic side effects may be reduced by using micronised progesterone in the form of oral capsules, transvaginal pessaries or gels. In addition, data from large observational studies have suggested that the risk of VTE and breast cancer with micronised progesterone may be lower compared to that with synthetic progestogens.
If breakthrough bleeding occurs following the switch to continuous combined HRT and does not settle after three to six months, then the woman can be switched back to a sequential regimen for at least another year.
If bleeding is heavy or erratic on a sequential regimen, the dose of progestogen can be doubled or duration increased to 21 days.
So that's good to know!
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Reb I can't give you any definitive answers but am very interested to hear that you experienced an inversion of the common pattern of feeling good on first half and lousy on second half of the cycle.
This was also the case with me: the dreaded progesterone 10 days are now tolerable, the withdrawal bleed week quite ropey and the first two previously good weeks are now quite unpredictable.
It's true that I have difficulty in absorbing estrogen which has gone down again despite a high dose and I need high serum levels of it so that could account for not feeling so great in the first two weeks but I am tempted to go continuous as well because I'm starting to think fluctuations in progesterone can be a trigger for feeling bad rather than the progesterone itself (check out the article Progesterone: friend or foe which is a real deep dive into progesterone with absolutely no clear answers because essentially little is still known about we react to hormones and what is responsible for what).
I am going to discuss this further with my consultant next week but at a brief meeting last week he told me that it is perfectly possible to develop a tolerance to progesterone even if previously sensitive to it.
So if you are feeling better in the progesterone half of the cycle it sounds like going onto conti might well be good for you.
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Place marking till I have time to reply - I may not have answers but can share experiences
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You can try conti but as your own cycle overrides the hrt cycle I think it may be too soon. It can be useful to take utro for 25 days out of 28 which allows for a bleed if there's been a build up. It isn't unusual for cycle length to change as you head towards meno so it's nothing to worry about and may not be covid related. I had a longer than normal cycle and the advice to stick to the hrt cycle didn't work for me, I just got further and further out of step as my own cycle was always stronger than the hrt one. I slightly suspect those that give that advice haven't actually lived through it! As you're bleeding anyway I'm not sure what they think utro is going to do (it's the withdrawal of prog that brings on the bleed). I'm probably post meno now but I could tell when I ovulated so I started utro a couple of days after that.
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You can try conti but as your own cycle overrides the hrt cycle I think it may be too soon. It can be useful to take utro for 25 days out of 28 which allows for a bleed if there's been a build up. It isn't unusual for cycle length to change as you head towards meno so it's nothing to worry about and may not be covid related. I had a longer than normal cycle and the advice to stick to the hrt cycle didn't work for me, I just got further and further out of step as my own cycle was always stronger than the hrt one. I slightly suspect those that give that advice haven't actually lived through it! As you're bleeding anyway I'm not sure what they think utro is going to do (it's the withdrawal of prog that brings on the bleed). I'm probably post meno now but I could tell when I ovulated so I started utro a couple of days after that.
Sheila, thanks for this, I have a feeling we spoke about this before and I have a feeling you might be right. I've been starting taking my utro earlier in my cycle (day 10) some months anyway as I can't bear the jitters that now dominate the first half of my cycle, and had been wondering if that what was causing the bleed, but like you say it's the withdrawal of the prog that's meant to trigger the bleed, and mine period is overriding the HRT timetable. It's so confusing!! I've even read the entire Utrogestan leaflet and that doesn't tell you what to do if your bleed comes early. It's a fairly basic question isn't it!
So do you think I'd just benefit from taking a longer cycle of progesterone, and a higher dose like Nick Panay says in the guidelines? Maybe that's the next step as I get further into peri? I don't mind particularly having a short cycle, but what I can't have is the massive iron/blood loss.
Thanks
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Reb I can't give you any definitive answers but am very interested to hear that you experienced an inversion of the common pattern of feeling good on first half and lousy on second half of the cycle.
This was also the case with me: the dreaded progesterone 10 days are now tolerable, the withdrawal bleed week quite ropey and the first two previously good weeks are now quite unpredictable. ...
I am going to discuss this further with my consultant next week but at a brief meeting last week he told me that it is perfectly possible to develop a tolerance to progesterone even if previously sensitive to it.
So if you are feeling better in the progesterone half of the cycle it sounds like going onto conti might well be good for you.
Hi Laszla
Thanks for this. Yes I've had a total reversal. I used to feel so ill, buzzy, miserable, and deranged on utrogestan, could tolerate about five doses vaginally, and now I can take 200mg by mouth no issues at all, in fact it's a sweet relief to take it, as I'm now buzzy and high histamine in the first half of my cycle (I usually had my worst symptoms day 14 and just before bleed, but now it's early in the first half, as oestrogen rises I think).
I'm also getting uterine symptoms (I can FEEL something is going on in there from about day 5!) of twinges, feeling a bit tender in my abdomen, some ovary pain sometimes etc. I suppose I'm having anovulatory cycles or something. But what is so upsetting post covid is the really heavy bleeding as that really and truly was gone, and that was what was causing all the misery (including urgent iron infusion, I was so anaemic). I really can't afford to lose any more iron, but the only bloomin' answer they give you is ablation (absolutely NOT), coil or hysterectomy. Now is not the moment to rant about the appalling lack of research going into women's wellbeing, but you know what I mean!
So I guess other than conti, perhaps I could try what Panay talks about in the guidelines, increasing the utro dose for those 12 - 14 days a month, or taking it for 21 days a month, but like Sheila says my own cycle seems to be over riding the HRT. Perhaps a higher dose of prog would help???
I just wish there was someone to ask! My gyane is brilliant, but even she says, 'well, you could try and see' as like you say, they don't really know enough about what is going on for women.
If you get time would you mind reporting back what your specialist says? I'd be interested to know.
Thanks
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Place marking till I have time to reply - I may not have answers but can share experiences
Hi Clarella
Yes I'd love to hear your experiences, that'd be great. I think I've figured more stuff out (with my iron issues, thyroid issues, histamine stuff and meno) by sharing with other women and getting our heads together than I have from any doctor.
Will wait to hear back from you.
x
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Hi All
Well after reading the national meno guidelines (penned by Nick Pannay) I dropped down to three pumps, and tried the 21 days of utrogestan (adapted sequential regime for heavy bleeding) and my period reset to 28 days and wasn't too awful. The jitters were better too.
This cycle I've done the same again but after three days of horrible fatigue, pain and a bit of spotting I'm bleeding (day 17).
Any idea what I do now? I know breakthrough bleeding is common but iron loss is my worry.
Do I just carry on and stick to the calendar and do my 21 days, or do I reset and count today as a new day 1?
The frustration of this time of life is nothing stays the bloody same. I just wish it was a bit more predictable!
Thanks
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I'm in a similar situation, uterogestan days were once unbearable but now its the opposite. Plus I've just started testosterone and everything seems out of kilter again. What are your histamine issues, how do they present, and do they seem linked with low progesterone or low oestrogen? I have terrible sinus issues and pain in my temple which I used to suffer with before HRT. I had covid at Xmas and now my sinus issue and head pain is back. I think the pain is actually a migraine. At times it's so bad I want to drill a hole in my head!
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Hi
Bless you. My histamine issues are quite extensive (have posted elsewhere on here) but if you google Dr Tina Peers (she's my gynae) she has some stuff on her website about it and the connection with covid. Progesterone is histamine calming, oestrogen is histamine aggravating. Dr Louise Newsom also has some factsheets on covid and histamine int the resources section of her website.
One other thing to mention is might be worth getting your Gp to rule out Temporal Arteritis, my mum's just been diagnosed with that, after same symptoms as you.
Reb
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Thank you. I will deffo read up on the histamine. I did see about temporal arteritis when googling before, but because it went away when I started HRT, I didn't need to pursue it. If it persists I definitely will make an appointment 😱
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Place marking till I have time to reply - I may not have answers but can share experiences
Sorry I never came back to this, will try to this week!
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After being on cyclical HRT for 6 years (I'm 49 but had very extreme early onset peri) I switched to continuous a few months ago after developing long covid following infection last March. After covid the estrogen-only days were unbearable, I couldn't sleep and was miserable. Consulted with Dr Sarah Glynne at Claire Mellon associates who is particularly good on menopause/covid links & treatment of lc in menopause. Weirdly, as soon as I went continuous I started having normal bleeds again on roughly my old cycle. So - for me, continuous seems to have been the right choice, though I'm just a few months in.
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Hiya Kittywells
Thanks so much for this. And thanks for sharing your doctor's details I'll look her up. It's utterly crap isn't it! But really really pleased to hear you are doing better. How long did it take before the relief kicked in?
Do you mind me asking what dose and type of HRT you are on, gel and utro or another kind? I'm hanging on for an apt with a new specialist (as after reading I realise I'm not as clued up on HRT generally as I thought as I was, and need a steer), but currently attempting 100mg utro a day continuous / 3 pumps until I see her (I used to tolerate 200mg sequential) and wondering if I need a bit more progesterone.
I started bleeding on day 17 and it's is still sputtering along but I'm now 7 days after it started and have just the worst jittery high hitamine vibratey, tired, can't sleep symptoms last few days (which is what I usually get, day 5 to about day 10 post bleed is just a living nightmare as E starts to rise, and these early cycle crippling symptoms are new since Covid). Im wondering if I need more progesterone, but don't really know what I'm doing.
And I'm assuming you take your prog every day (not the three days off continuous regime) - I think it's the ups and downs, and days of too much unopposed E that are driving me demented.
I'd be grateful for any info you are willing to share, but thanks, you've given me hope.
Reb
x
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Reb just wanted to hop in and say what you've described there matches identically what I've been going through these last three weeks since stopping my Xolair injections. I could have written your description myself. Confusingly I also get some of those symptoms (tired but insomnia) from using Progesterone at a time in my cycle when it wouldn't normally be there (ie. Follicular phase) - just mentioning in case it's relevant.
I met with a specialist histamine / meno / long covid doc today who was really lovely (there was a long waiting list for Dr Peers). She didn't shed any new light than anything you've already said re covid, but just reaffirmed that it is now proven to impact both hormone levels, ovaries and histamine / mast cells. As my urticaria and associated histamine problems started only 6 weeks after covid she also thinks that was likely a cause for me. Sending you much love, I hope you find something that works xx
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Gilla
Just a quickie as I'm on my phone, will reply properly from pc.
I take asthma drugs off label for mast cell stabilisation, so makes sense you have more symptoms now you are off jabs.
And yes too soon to say what's what, but utro normally stops dead my symptoms (I had them before but at ovulation and pre period, now week 2 is hellish).
Do you mind me asking who you saw? I'm seeing TP next month but it's v long gaps between consults as she's so busy. Person next week is just for a steer on HRT dosing (it's confusing) not the histamine side of things.
I need some relief as struggling to work, bills piling up!
Hope you got some answers and a plan for histamine.
Reb
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Dr Peers has been quite evident on twitter recently.
She certainly thinks outside the box and I believe is very much a leading light for endocrine disorders , especially regarding menopause and autoimmune issues.
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Reb it was a lady called Dr Corrine Fletcher, as part of Menopause Care Ltd which is run by Dr Naomi Potter - Dr Potter is quite well known I think.
She didn't tell me anything outside of what you've already mentioned, but was very knowledgeable and I was glad to get a quick appointment.
It really is horrendous Reb and such a shame after you've had such a good spell. I really hope continuous helps you xx
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Reb, I've recently switched to continuous (very early days) and as someone who used to be so progesterone intolerant it blows my mind that I now seem to feel better with the utrogestan having increasingly felt terrible on the estrogen only phase. Just shows we all need to really constantly gauge and be attuned to how we feel and not be driven by hardwired thoughts like 'I'm progesterone intolerant' because things can change.
Panay told me it's perfectly possible to develop a tolerance and, as I think I mentioned in earlier reply, the article Progesterone: friend or foe (which I recommend) suggests that it can be the fluctuations - up or down and to and from - progesterone that can cause the nasty symptoms rather than the substance in itself.
I'm also astonished to have read a few papers saying that progesterone can offer better bone density protection than oestrogen that is much more commonly referred to as the holy grail for osteoporosis - I take a high dose of oestrogen and until now very little progesterone and in a year my bone density got even worse reaching official osteoporosis levels.
So I'll be very curious to see how things go.
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Hi All
Thanks for comments. Iaszla - yes I dreaded the progesterone and was highly sensitive to it, and now I do OK on it. On sequential it was - eventually -the only thing to stop the jitters and yes I've also read up on why the body needs it in and of itself. I think the issue for doctors is in the 'natural' and 'functional medicine' world, oestrogen is seen as the baddy, and there's an almost cult like devotion to progesterone and the work of John Lee (quack quack), and a lot of guff circulates about 'oestrogen dominance' aka a hormonal IMBALANCE aka the menopause! I will look at that document again. My hunch is covid tanked my P levels, so the first two weeks of my cycle, I feel really out of whack.
Anyway, in better news, I got some sleep last night, not enough and still have an underlying 'revved' feeling (it's a sort of taut as a piano wire, drunk too much coffee feeling) but it's lessened as has the bleeding and I actually feel like I had some rest, rather than lying there with my eyes shut. I still feel like I've got a lot of 'activity' in my uterus, but it's not as painful. I have a feeling I'm probably a candidate for 200mg prog a day continuous, but we will see, for now just sticking to 100mg til I have this review. Can I check you take it without the 3 day break (there seems to be conflicting opinions about this, but from what I'm reading taking it like a Mirena Coil, prog every day, is totally fine)?
I agree that it's the fluctuations (and the withdrawal from P) that causes a lot of the issues, that defo seemed to be the case with me when I tried Qlaira. I have serious thyroid issues that resulted in a thyroidectomy, and my endo told me the body likes the same amount of hormones in the same way at the same time everyday, I'm thinking it's probably the same with HRT. I'm at the point where if I don't get some steadiness and predictability I'm going to have to get a different job, as I'm up and down like a fiddler's elbow - I just need today to be like tomorrow and the day after. I'm a fairly stoic person, but it's getting silly now.
Thanks
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Reb I know what you mean about the cultish devotion to progesterone in some more marginal areas of medicine.
As we've touched on I think balance is key rather than one hormone or other being a magic bullett.
I don't plan to break for 3 days for now, I'm going to try taking 100mg daily of utro but I haven't completed even a month of conti yet so can't yet report back.
You might look into agnus castus which is excellent for some women at balancing hormones and is particularly progesterone enhancing. It's fine to take it while on HRT, I checked with Panay and he is very much in favour of it. Might be worth thinking about, I certainly find it helps.
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That's interesting about Agnus Castus (I give it to my very hormonal mare, given animals don't have a placebo affect, and it works, there's defo something in it), i might wait til I can see the wood for trees before contemplating adding another variable to the mix.
Have you had an improvement in symptoms in this short time you've been on continuous or did he give an indication that might take? Have to say I'm feeling fairly wretched, as I feel really wired, it's so hard to sit on your hands and tough it out! I'm currently in first half of cycle symptoms (that I'd usually get on E only) so a bit baffled why adding the progesterone hasn't helped yet, hoping it just takes time for my ovaries to get the message and everything to even out.
Thanks for getting back to me
x
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Just adding a quick reply here because don't have time to read the whole thread right now but here goes.
I have long covid and it caused histamine issues. Complete nightmare. My menopause specialist at Newson Health put me on continuous progesterone because it calms the mast cell receptors and also helps with any damage to the endothelium (as oestrogen also does which is why HRT is so important in long covid - plenty research on this if you look for it). I know several women with long covid who have done the same (some on progesterone only) and it really helps keep things consistent. So, YES move to continuous ASAP. You might get a bit of bleeding initially which might calm down or you might need 200mg of utrogestan per night. See what your doctor says.
Also, I am assuming you are on a low histamine diet. It took 6 months for my mast cells to sort themselves out on that diet and was completely necessary. I still keep to lower histamine food while going through perimenopause with long covid.
Am also assuming you are on quercetin and slow release Vit C. Sorry this is so to the point!
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Hi Zoe
Thanks that's super helpful. I have long term histamine issues (before I had covid) so fortunately I was on all the drugs and supplements before I got the infection, it's just that my hard earned stability went to pot (took me two years of painstaking work to get stable and get histamine down and to tolerate HRT!) post covid and my cycles shortened, the P free half of cycle became unbearable and bleeding heavy again. And I've not come right since, but meanwhile also turned 50 so prob a combo of factors.
I don't take quercetin too much as it blocks iron absorption (covid also messes up and then tanks iron, another issue I've had to fix AGAIN, I found my histamine issues got much better post iron infusion the first time around) but I do take Neuroprotek which is pretty much the same thing.
Thanks very much for your response, I feel reassured. Yes heavy bleeding is a big issue for me, but currently on 100mg until I speak to the doc as have had a bit of chopping and changing and want to get steady so thought I'd hang tight until then. I'm still bleeding (7 days now) but it's a sputter, not a flood so not too worried and piling in the iron!
Thanks so much, I'm hoping things might settle.
Reb
x
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I really hope you find a solution, Reb. Long covid is the worst thing I have ever experienced. It is no surprise that perimenopausal women are hit so hard by it since it is extreme bodily dysregulation on top of an already dysregulating reproductive system. I was not on HRT prior to covid but wish I had been! All great in hindsight.
It's difficult because everyone just wants covid to be over, and I completely get that. But there are around 2 million of us in the UK, most aged under 50, living with a very debilitating condition - no known cure and very little support.
I was very grateful for Newson Health, and my GP being open to their input. It is difficult to manage perimenopause and long covid if you don't understand the histamine and endothelium/blood clotting issues. And, of course, each person's experience of long covid is different.
It seems the only way forward is to rest, pace and support the body with whatever extras it needs depending on symptoms. I was also interested to learn of younger men also experiencing the symptoms of insomnia, panic attacks, migraines, hallucinations, drops in testosterone levels, etc. I am convinced the pituitary gland is affected by the virus, in addition to other parts of the body.
Anyway, to any ladies on here affected by long covid: well done on making it this far - it is a long and horrific battle but it does get better. May 2023 be a year where we see proper awareness and understanding and, importantly, better treatment.
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Hi Zoe
Bless you, histamine issues are just the worst. Mine were caused by three bouts of flu, inc H1N1, in the early 2000s, took a long time to figure it out, took many wrong turns (with much bad health advice along the way that made it worse) and it went nuclear at peri (what tipped me over was a general anaesthetic for polyps and a D&C in 2019, then prof Studd put me on whopping amounts of oestrogen and the wheels fell off!). I've been under Dr Tina Peers since 2019, who is an expert in HIT and HRT and menopause, she helped me get stable and tolerate HRT, she's now also an expert in Long Covid (they are essentially the same thing, mast cell over activation, and the trigger can simply just be menopause, or something like a nasty virus. Covid seems to be a particularly horrific one due to it's horrible attack on the ovaries).
I had a quick look at Newsom's factsheet on Long Covid (her factsheet on HIT is very good, but I do know they refer their really tough cases to Tina Peers, I also know they have a reputation on being a bit slap happy with the oestrogen, which again can be disastrous in case where histamine isn't properly stabilised first) but I was surprised to read that her LC document doesn't mention mast cell stabilisers and antihistamnes, and quite worryingly suggests women eat fermented foods like Kimci and Sauerkraut! Fermented foods are the very last thing you should eat if you have histamine problems. I take Symprove for gut, it's made a big difference, but fermented foods nearly put me in hospital (back in the dark days of searching for answers before I was diagnosed with HIT).
I was fortunate I was on protective levels of HRT (alas not continous), and plenty of mast cell calming drugs and supplements when Covid hit - Famotdine in particular is very useful in Covid (it's an antacid, but an H2 antihistamine, worth googling re covid) so I'm hoping I've dodged the worst. I also take Fexofenadine, Montelukast and a tiny bit of Zaditen. I've found Toxaprevent at night (or Enterosgel) is good for pulling histamine out of the gut, and I use a DAO supplement. I do all the vits and minerals. Iron and folic acid has been crucial for me - I am a slow oestrogen metaboliser and I've had to tinker (very carefully) with methylation which has also helped.
I am not in any way dismissing Long Covid - it's been utterly crap - but I do think the name is a bit of a misnomer, it's really Mast Cell Overactivation, which often turns up at peri, or when starting HRT (hayfever, sinus issuse, asthma etc) and sometimes triggered by a virus or an event (there's a trauma component also, so a traumatic birth, a bereavement, a car crash or whatever can kick it off).
There's also a link with anaemia and histamine - and covid crashes iron - I feel a million times better when my iron deficiency is well controlled. https://www.cambridgeindependent.co.uk/news/long-covid-patient-in-cambridge-tells-how-simple-treatment-t-9203620/
The point of me saying all that isn't to dispute 'Long Covid' more to say LC is just one more aspect of MCAS or HIT and it really can be treated. It's total pain in the arse, though.
I am hoping continous is the answer for me, as this last six months after finally feeling well has been heartbreaking, but before all that with my HIT under control I was back to work, back exercising, and back to my old self and tolerating HRT well. I'm hoping I can get back there again, but I couldn't have done it without drugs first, as my histamine was just off the charts.
Anyway, you've given me hope and reassurance that continous might be the answer I need now, and I hope you can find your way back to your old self, the dark days of histamine I wouldn't wish on my worst enemy.
In happier news, I slept like a LOG last night, I'd been starting to panic that continous prog had messed up my sleep but fingers crossed.
Happy to chat histamine if that's useful,
Reb
x
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I think it is very important that long covid is named and identified for what it is, since many of us had none of these issues prior to it. For some, covid has made worse conditions they already had. For others, like me, it triggered a cascade of events and issues that would not have happened but for covid. The histamine issues are just one element.
Today the Scottish Government has launched an inquiry (albeit a very short one) into long covid. It is scandalous that it has been essentially ignored up to this point. Therefore I do think it needs a distinct focus despite the obvious overlap with other issues, such as HIT/MCAS.
Tina Peers has a lot to offer, as do the cardiologists who focus on the endothelial/micro clot issues (such as evidence coming out of the RECOVER study). Long covid is a complex matter.
Yes, Newson Health's factsheet mentions things that do not help with histamine intolerance and it needs updating. My own NH doctor was the first, however, to identify the issues I had with long covid and histamine. She referred me to their nutritionist who gave me invaluable advice about how to handle it.
So much to learn and absorb! X
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Hi Zoe
True! I think there needs to be a root and branch inquiry into much of Covid and the pandemic handling full stop, not least the virus' origins, but that's a rant for another day!
I think I've been fortunate that I knew I had HIT / MCAS and was already on HRT before I got it to be honest, and I got a milder strain in 2022 not in the early days. I have other health issues also (that's a whole other chapter and verse) so I do understand just how it feels to be up the creek without a paddle and no help at all, I've been on a decade's long odyssey to get my health back, much of it I've done myself with help along the way, it's been excruciatingly lonely at times, so I really do get it. That's why getting Covid after SUCH A STRUGGLE to get back to normal functioning has been such a heartbreak, but hey it is what it is.
I really hope you find your way back to you, I used to say to my practitioners 'I miss myself'.
Anyway, thanks again, you've given me hope on continous P, so I'll see how that goes.
Best
Reb
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Happy to share. I really know how miserable the conflation of post covid and peri symptoms can make one - it's a raging dumpster fire of awfulness. Since upping my estrogen, moving to daily progesterone and adding testosterone I've really found big improvements in brain fog, energy, sleep and mood. It has taken me about 4 months to see big improvement, but I started feeling a bit better almost right away from going on testosterone.
Currently I'm on: 135mg Estrogen via cutting up Evorel patches, working my way up to 150mg. My local GP, who helps on the prescription end based on Dr Glynne's reccommendations, is not down with me applying than 100mg estrogen patches at once, but I'm going for it as an off-label, self-administered thing. Have noticed some breast tenderness/little pains this week but suspect I may be ovulating.
plus
one 100mg capsule urtogestan every evening, no days off
and
Testogel , pea sized amount daily from 40.5 mg sachet. Fiddly but I get on with this better than Tostran, which I didn't feel good on. Testim worked well for me too but went out of stock.
Hope this is helpful Reb! Hang in there x
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Morning Kitty
Thanks, I was just coming to post and found you'd replied. I am really struggling (which is frustrating as I was really struggling before!)
I had been pottering along OK on 3 pumps of gel and sequential prog finally - it took a while (pre covid) to tolerate any prog at all, so we initially started one day on, one off, for a many doses as I could manage (started with 5, on v low dose E, and worked up) but over time I managed to get to a standard sequi regime. As you know the issue then was feeling FAB on E, and crappy on P (it had a weird stimulatory effect, made me jittery, puffy, and over stimulated, this seems to have resolved in time)
Just pre covid I started getting low E symptoms (soreness, dryness, sore shoulders, crushing drops into just unbelievable fatigue). Went on vagifem. Then I got covid, which kicked off the symptoms in the early half of the cycle which - I posit - was too much E relative to P, wired, jittery, histaminey, sleepless, and just like a live wire with no insulation. Also I was getting MASSIVE dips of fatigue, hair loss etc. Went for bloods thinking it was my iron and also tested E about 2 hours after applying the gel. Iron was fine and E came back at 290. In the dark days of histamine havoc pre diagnosis my E was consistently over 1,000 (1,200, 1,600, 1,800 etc)
So, I made the logical deduction I thought, that I needed more E, went up to 4 pumps. This did help with fatigue, mental clarity, work productivity etc, but in hindsight (thank God I keep a daily spreadsheet, and have done for over 800 days now) the week 2 jitters got worse. At the same time my ability to tolerate P in the second half of my cycle massively improved, I could easily take 200mg a day sequential and this resolved things, second half of my cycle was a blessed relief as you know. However, week 2 jitters was worse, and this E increase coiniced with the short cycles - 21 days, 23 days, 24 days, and very heavy.
So I dropped back to 3 pumps, but the crushing fatigue was back, pain in shoulders, arms, toes, fingers ... I'm currently on 3.5 ... but not seen the gynae for a review for a year, we do email, but she's super busy so I'm guessing just having a quick look at my notes. And I haven't had a consult with her re covid yet (next month) and she is expert at HIT and LC.
Sorry for long preamble, very foggy and tired today...
My question. I did one long cycle progesterone (21 days as per BMS guidelines up thread) starting prog on day 5 - 26, felt great, dodged the week 2 miserty, period came bang on day 28. Thought I'd cracked it.
I've done the same this cycle and bled on day 17, we're now day 24 and still in pain, spotting, distended, scraping feeling in womb, I feel like I'm vibrating inside and outside, and actually have a tremor in my hands. And more to the point unbelievably WIRED, jittery, tearful moody, sleepless, can't work, can't think, biting people's heads off, nervous and generally feel like I've had too much coffee. Wired and tired.
In short, I've had those hideous symptoms I get in week 2 (which whilst hideous, only lasted a week) continuously now since bleeding on day 17 and it's been a bit more pronounced since adding lots more prog to the mix. This is what happened to me when I've tried the pill (pre covid), had one good month, and then the jittery buzziness was continous and had to stop.
Reached out to the lady I'm having a review with next week to tide me over til I see the gynae (new practitioner, more for a bit of HRT education as I've realised I'm a bit confused about stuff) who has suggested stick to vaginal for now. Yesterday was just awful, had to email clients as I'm so behind on work. Weeping, etc.
It had finally settled by bedtime, inserted the 100mg vaginally, and the over stimulated feeling immediately started. Not as bad granted and have slept. But I am not myself at all.
I am wondering (and I am very tired so I'm hoping someone can help) whether a) I'm on too much E for my histaminey long covid self to handle and b) whether this feeling revved up thing will settle, or whether Im just one of the unlucky ones who gets wired on conti P. I confess that even though the post covid symptoms early in my cycle were nigh on intolerable, they were more tolerable than this, and at least I had two and half weeks of feeling normal.
I am going to try and grit my teeth til my apt on Thursday, but unsure I can tough this out long term unless it settles. Wondering if a lower dose E would help, and also whether (subject to bleeding) whether I could get away with 100mg every other day. No idea.
This is why I've always resisted the coil, as at least with tabs I have some control over when the misery ends. I also don't understand why P would turn my symptoms off like a light switch on sequi (and it really does) and rev them up on continous?
Sorry for the essay, trying to be clear and understandable in my exhausted (but not at rest!) state.
Cheers
Reb
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Reb, I'm so sorry things are this bad for you. I don't have anything specific to offer except my own experience so far, as I understand too little about how all of these hormones interact and the reasons why different individuals respond the way they do. My approach has simply been to find someone who does understand and put myself into their hands! My ongoing cognitive, nervous system, and fatigue problems from the long covid have made this neccesary for me.
Normally I'm the kind of person who dives in to research and understand everything, but this is so hard when your brain isn't working properly and operating a computer is challenging. I've also found that being in this position of researching online and feeling a scarcity mindset when it comes to trustable information (sadly the case with both LC and meno/peri) and a lack of control around my health outcomes is really activating for my nervous system. Which is terrible for my LC symptoms and general recovery.
So, as a last thought, I wonder what else you are doing to treat your LC problems? I am wondering if some of your symptoms that you attribute to hormonal fluctuations could potentially be caused by nervous system dysfunction and other systems of the body being affected by long covid? It sounds as though you are really paying very close attention to the timing of symptoms with changes to your hormonal input, but these experiences in your body could have other sources. It may be that you've already ruled this out, of course. But I'd say talking to a doctor who understands both LC and perimenopause and the massively complicated way these two conditions interact is really the key. I am sending you positive energy and hope things improve for you soon. It sounds as though you are doing everything you can to take care of yourself. Kx
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Hiya
Yes I work with a somatic practitioner for nervous system stuff have done for three years (cPTSD, a lot of it medical, long story, histamine is also part of fight or flight). It's so frustrating as I was better, took a loooong time, but I'd truly finally found a place where I was well ... and then, covid. My histamine issues come from three bouts of flu in the early noughties, we've figured out in hindsight, but the over activated nervous system and lifelong hormonal issues probably meant I was dry kindling ... But to have lost it all again is just bloody heartbreaking.
I am speaking to Dr Peers next month, not had a review since covid (she's about a year lead in on Apts now, because she's so busy with LC cases on top) so depending on how much support she's able to give me, I might speak to your doctor as I need more hand holding than I'm getting right now. We will see. TP is lovely, truly lovely, and I need prescriber for all the mast cell stuff and she's super supportive and knowledgeable, just not very accessible currently.
Weirdly I'm more buzzy today after 100mg vaginally than I was yesterday after 200 orally (I wasn't jittery yesterday but was so tired, weepy, blue and just not functioning or able to think) so I totally agree that trying to puzzle this out on my own, online isn't the way to go, learned that the hard way, but I think leaping to the 'conti prog makes me jittery' isn't perhaps the cut and dried case my exhausted self thinks it is! It's just on days like today, I just want to STOP this madness - at least I wasn't a jibbering wreck of these proportions on sequi. But then I'd have to start again. Will see what tomorrow brings, I might well cut my losses and regroup, I look properly ILL today, I really do.
Reb
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Brief update to say I'm remarkably better this afternoon.
I've decided I can't possibly figure this out on my own, even the HRT I'm groping in the dark and panicking and making changes sometimes too quickly or not consistently so I really, really, really need to slow down and just go at this very carefully and find some proper hand holding with someone that I can get hold of and check in with when I need to. Hoping this lady next week knows her onions.
Will keep checking in,
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Just a quick update.
Conti was a spectacular failure, jitters got worse and worse, had a massive histamine overload spike (not had one of those for at least a year, if not longer) and had to stop.
Now seen a meno specialist (on HRT dosing, not my histamine specialist gyane who I see next month, after a year's wait between apts as she's so busy) who suggested regrouping on two pumps and higher dose P sequi - start from the beginning again. That was an unmitigated disaster also as whilst the histamine came down, I landed in low E crashing fatigue! Gritted my teeth for ten days but now back on three pumps (feeling vaguely human) and waiting to try 200mg utro sequentially for 14 days - I can tolerate 200mg, but not done the full 14 days at this dose yet, even so this is huge progress as when I first was diagnosed with HIT in 2019 and tried HRT the best i could manage per cycle was 4 x 100 utro, and even that revved me to the moon and back.
Happy to report that I'm just into week 2 of my cycle and the post covid jitters have not arrived, which I think must be slightly less E on board (although both me and the doc think I need four pumps, can't tolerate it yet as can't seem to get enough P to blance it out). So I'm hoping if i can handle the full dose P sequentially, that might help my cycles, we will see. I'm also going to test my E very month on the same day of my cycle (£50 at Nuffield) and just see if I can glean anything.
In short, despite needing conti, I can't handle it, as unlike when I take it sequi, it has a whopping, paradoxical stimulatory and histamine aggravating effect when taken every day - specialist said I'm betwixt and between - properly in peri but not far enough in to handle conti, so it's like 'trying to put a lid on a boiling pot'. My body wants and likes having a rhythm.
I'll report back when I've seen the gynae - Dr Peers, she's lovely - as I'm hoping she might be able to shed some light on the covid element, but my frustation with all meno care is 'well, you could try ....' - trial and error for me is total catastrophe and a month off work, it's getting seriously OLD now, so tired of it!
Hey ho, onwards we go,
Reb