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[Gilla999]

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

[RebJT]

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

[Marchlove]

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.

[Gilla999]

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

[laszla]

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.

[RebJT]

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

[laszla]

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.

[RebJT]

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

[Zoe]

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!

[RebJT]

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

[Zoe]

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.

[RebJT]

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

[Zoe]

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

[RebJT]

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
x

[kittywells]

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