Hi All
I finally saw Tina Peers at her Harley St clinic after seeing Prof Studd and feeling like crap. As it turns out I'm back on his regime but Dr Peers gave me the missing piece of the puzzle - histamine intolerance and mast cell over activation. Thanks to everyone who messaged me about her too.
So (gratifyingly) turns out I was right and I do indeed have HIT and Mast cells problems, but SO DO A QUARTER of women at perimonopause / menopause. I'm getting all the usual suspects, skin flushing, vibratey feeling, feeling antsy, irritable, tearful, painful and heavy periods etc.
I was also right that it's mediated by estrogen so histamine tells your ovaries to release more estrogen, and estrogen tells your mast cells to release more histamine. Histamine also does something to the prostoglandins in your endometrium.
Also most ladies with this issue ALSO have prog intolerance! This is explains so much for me, with my worst symptoms when estrogen peaks but also feeling crap when Prog peaks, and the horrendous bleeding. Obvs estrogen goes off the charts (but inconsistently) at peri, which explains my whoppingly high levels but my high histamine kept pushing my estrogen higher, which made the histamine situation worse - bingo. I had a terrifying experience when I went on Studd's regime after surgery, my face and lips went numb, and I was ITCHING all over, and felt frankly like I was going to die! Also turns out that I was right that the general anaesthetic did tip me over the edge, people with this condition need to tell the anaesthetist as you need steroids and high dose anti histamines (had polypectomy and D&C end of July, then went on HRT, thus followed two months of utter hell).
So I'm on high dose (360mg) H1 antihistamines, 300mg rantidine and a mast cell stabiliser (montelukast) for six months, plus a raft of flavonoids and supplements that also help (curcumin, Neuroprotek, maritime pine bark, mag, zinc, and something called toxaprevent and symprove probiotics - all of which I knew about due to my long term health issues). Oh and turns out this histamine nightmare blows up your thyroid. Given I've had up and down hormones all my life and mast cell probs are mediated by sex hormones (which is why women by far and way are more likely than men to have it) this does answer a lot of questions.
I'm on three pumps estrogel, and 12 days utrogestan and 1 pea blob of T a day. If I don't get on with Prog there are now 'mini mirenas' (6mg a day rather than the usual 20mg) that she's having good results with with P intolerant women in terms of protecting the womb.
I'm almost three weeks in and whilst the strict diet is a bit boring (takes your body 6 months to replace all the mast cells, you have to allow all the inflammation to calm down so that your 'histamine bucket' doesn't over flow at the drop of a hat) I must say I'm feeling a LOT better. She said, all credit to Prof Studd but she felt he'd misinterpreted my jittery, feeling like I'm being eaten alive by a million ants (which happens my E is too HIGH) for 'formication' - blood tests bore this out - when in fact it was allergy symptoms to being flooded with histamine and in a loop of climbing estrogen.
She said even in brilliant Nick Panay's clinic she's struggling to get her male colleagues to spot this, as they are not putting two and two together when erstwhile healthy women start getting hay fever or allergies or asthma either at peri or when they put them on HRT.
I'm not in meno yet, still regular, but she said the E should 'even me out' and stop the massive peaks and troughs that are sending these symptoms off the charts. Not had a period yet so will keep you posted.
Hope this is of use to someone else.
Rebecca