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[CrispyChick]

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

[joziel]

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    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.

[CrispyChick]

  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???

[joziel]

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 

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.

[Gilla999]

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

[joziel]

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!

[CrispyChick]

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

[joziel]

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  ). 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?)

[AnnieK]

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.

[Scampidoodle]

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.

[Marchlove]

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

[ATB]

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.

[Gilla999]

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  ) 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.

[Marchlove]

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

[CrispyChick]

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.