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[lindseywalsh]

Oh rebecca, I feel for you .....

Going back to your posts towards the end of Jan, your first priority was to get the iron sorted - how are you doing with that?

If that is becoming stable, how would you feel about leaving the oestrogen for now, and getting some stability back with just the oestrogel?

From what I can gather with the London Hormone Clinic (with whom I am consulting next week), they turn to compounded progesterone when they have ladies who just can’t tolerate the utrogestan in the 100mg dose. (They often use the oestrogel/utrogestan protocol if it is well tolerated). It looks as though they titrate up from 25mg and then adjust the oestrogen dosing to allow the lowest possible progesterone dose.

Because Prof Watson at John Studd Clinic assured me that it takes 8 years to start with any serious problems re thickening of endometrium, I would be tempted to get on an even keel over the next couple of months with oestrogen only (if that is possible ....).

I have often had that “shaking/jittering feeling” as though it’s beneath the surface of my outer flesh. I have always interpreted that as cortisol rushes. For this I used an amygdala balancing online programme, which essentially encourages your whole system to calm so that the body can self regulate. It has helped enormously actually. (Mostly guided meditations that bring the body into surrender). It may be the last thing that you feel like considering, but I have done a huge amount of research, and I do feel that it helps me.

I hope that this helps a tiny bit. I feel fortunate that I am able to throw savings at this to find a way out of this extremely challenging situation.

Xx

[RebJT]

Hiya

Thanks, and I'm fortunate I can go private too, although gynae is in London and I'm in the sticks so easier to get NHS to fit the coil if that's the route I decide to go - gynae tells me she's fitted 20 for histamine intolerant / prog sensitive women like me and they all say it's the best thing they ever did, however, I can't find a positive review on here or anywhere on the web (mumsnet is full of horror stories also!). 

I've also got a script for Qlaira, which I'm considering next cycle, worth a try whilst I'm waiting possibly and in theory should shut down my own ovaries (blasted things, bain of my life!).  And yes am considering the estrogel (just have to watch the histamine) on it's own, that's when I felt the best - gynae did say with regular scans I could do a bleed every three cycles possibly, but contigent on lining not building up too much (this is why I like the *IDEA* of the coil, in theory I'd be free to play around with estrogen as much as I want).  And I am also working on meditation and regulating the system (for reasons I won't go into here, let's just say being stuck on fight or flight is something I know quite a bit about so I'm totally open to all that).  I do something called Somatic Experiencing ... v good also.  Be interested to hear what you use, sounds very good.

Which clinic are you with?  I'm with Nick Panay's clinic in Harley St, Hormone Health but a regime of 25mg titrated upwards sounds great!  Jaydess coil is 13mg but obviously every day, which is what worries me!

Iron is good currently, just awaiting test results on my Hb and RBC - I'm now five weeks post infusion so they should have come up as my bone marrow gets busy making new cells.  Obviously won't stay great if I keep losing so much blood, hence needing to stop or lighten my periods, but iron clinic told me to start supplementing iron again every other day now, so hoping I can keep myself off the deck.  They've also promised to infuse me again before I get symptoms (I begged!!) as never going through that hell again.  Originally he said, 'if your symptoms come back ...' and got up a bit of a head of steam and in the end I interrupted and said 'can you stop talking and start listening ... I can NEVER go throught that again' (one benefit of going private, they do in fact pin their ears back!).

I think I'm going to organise some tests irrespective of gynae, I can get them privately, I'd just like to know what's going on these whacky symptom days (although rapidly going broke, although hope to be back to work next month, I freelance and am booking jobs for March, just hope I'm in a fit state to deliver!).

Feel a bit better today although still have crampy pain, but not jitterbugging, although hands still shaking ... I've done my 7 doses of utrogestan (for the first time ever) so not going to push my luck and just sit tight now and see what happens with my period I think.

Thanks again, keep me posted with your adventures.

Rebecca
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[Kathleen]

Hello again ladies.

My trusty meno book which was written by a female MD and published years ago says that low oestrogen is the cause of the jittery feelings.  She adds that the centres of the brain that control a sense of well-being, a positive state of mind and a feeling of control and tranquillity are affected by the absence of oestrogen. She claims that taking oestrogen supplements in the form of  HRT will bring about a return to normality. Easier said than done though!

Take care.

K.

[KBallinger]

I had hand tremors and internal shaking with high pitched tinnitus. I thought my hormones (oestrogen) had dropped so I had blood tests on the day I was feeling like this. In fact they were over 1000pmo/l!  I too have a histamine intolerance and feel trapped as I think I should stop patches but I have no ovaries and do not want to experience full blown menopause - although I do not think I could feel much worse.
I know I lost a lot of blood during surgery and my ferritin levels dropped to 40 but that was 3 months ago. I have been taking 210 iron tablets once a day which is only about 69 of iron daily but do not know if that has done much.
I tried the jaydess coil under Tina Peers but it made me so depressed. But it did help anxiety and histamine rash. But my lining of my womb still built up and spotted the 4 months I had it. X

[RebJT]

Hello there

Yes I had tests three months in a row on the days I felt jittery also and my estrogen was 1600!! Not tested for a while though. This latest bout of the jitters is a different kind of jittery though, feels different to high histamine (know my symptoms by now), it feels like high adrenaline or high cortisol.  And how interesting, she told me all the ladies she's given a jaydess to say it's the best thing that ever happened to them, and here you are saying something different!  Thanks for replying.  I so hear you, I feel trapped too as I'm going around in circles.  Interesting it didn't control endometrial build up either.  I don't think I want to try it, I'm so scared of being trapped in the jitters.  So sorry you are still suffering.  Definitely fix the iron as my histamine symptoms are a million times better with good iron.

Like the lady who posted above you, Prof Studd told me absolutely emphatically that my jitters were low estrogen (despite testing me himself and finding the opposite, levels well over 1200 ...) and he put me on three pumps with no support for the histamine and I felt dreadful, my face went numb and I thought I was goign to die or have analphalaxis!!  When he rang me back at home (me in despair) he was very short and said it couldn't possibly be the estrogel, which it clearly was.  With histamine support estrogen makes me feel amazing, until I add the bloody progesterone and then a fresh circle of hell opens up!

I honestly do feel angry that the care for ladies like is us so crap ...

Reb
x

[KBallinger]

Reb

Thank you for your reply.

May I ask how you supported your histamine to enable you to tolerate the oestrogen.

My tinnitus and rashes are driving me insane. My tinnitus is always worse when histamine high. Tonight I also have tingling face and lips.

 I eat a very strict histamine diet. However the fexofenadine that Tina Peers prescribed leaves me really groggy and dries my eyes out so I do not take them.

 X

[RebJT]

Hi

Do you see Dr Peers privately or NHS? If the former I'd email her clinic and ask for a change of script, they are very good.  I also take fexo but I'm fine on it, I take it three times a day.  I also take 10mg montelukast (mast cell stabiliser) at bedtime, and I was taking 10mg famotidine (H2 antihistamine, it's pepcid, an antacid used off label) until I realised it was blocking my iron absorption.  I only use an H2 like famotidine (or Zantac, which you can buy OTC, 150mg x 2 a day) on the days I'm symptomatic as it's more important to keep the iron up.  I am symptomatic at day 14 for two days, and in the run up to my period and as it starts - usual times this is very unpleasant, when my iron is low this means I have a banging heart, shake from head to foot, I vomit as my histamine is so high, and have terrible, terrible, terrible anxiety and brain fog etc etc, I honestly thought I was going to die when I was properly anaemic and my period came.  Other days of my cycle I can have a bit of a rash, but not feel unwell.  You really have my sympathy, it's bloody awful.

I also take some supplements (fresh ginger tea really helps) and natural things to help with histamine, and there's also a connection with folate and histamine, I've just plotted all my results on a chart and have realised that the worst of the histamine started when my folate dropped into my boots along with my iron - you need your Hb above 130 and your ferritin over 100 to feel well, mine's virtually never been there.  My folate has been at less than 5 for about four years, this is when the trouble started! 

I'd really recommend getting your iron fixed, as that should make a big difference to your histamine.  And maybe I'm just stubborn or pig headed, but logic dictates there's an answer to this problem, that being the case, I'm determined to find it, as this nonsense is no way to live.  Medicine really needs to buck its ideas up when it comes to women's healthcare.

Hang in there,

Reb
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