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[RebJT]

Hi

New to the forum and to HRT, for the full tale of woe see here: https://www.menopausematters.co.uk/forum/index.php/topic,44844.0.html

In a nutshell, I saw prof Studd for heavy periods (just had a polypectomy and a D&C for unbelievably heavy bleeding, and then two irregular cycles, one with a bleed that wouldn't stop).  Prior to that never had a missed period, or an irregular one, although polyps can cause irregular bleeding.  I'm defo peri, but not in meno.

However, the issue that is derailing my life is jittery, allergic, buzzy, wired to the moon, high histamine symptoms.  These happen around mid cycle (I'm anovuatory, I'm 46) and just before my period.  I live on anti histamines during this time and have to avoid high histamine foods - wine, aged cheese, cured meats, dried fruit etc, and I have a red bloom on my skin like sunburn.

The prof, unsurprisingly put me on estrogel, utrogestan and T

However, 11 days into estrogel (one pump for a week, now a few days on two, according to him aiming for three) my histamine symptoms are off the charts, I feel like I'm literally being eaten alive.

He said these 'creepy crawlie' symptoms were 'formication' ie) low E.  However, on both days that I had my E tested, first by the hospital, and then by prof Studd, I had these jittery symptoms and my results were respectively 1,100 and 1,575 E.  So my E was HIGH not low.  Although both tests were day 12, when I suppose you'd expect E to be high (although perhaps not 300 points over the top of the range!).

I've been getting these symptoms ever since my thyroid was surgically removed (the interplay between thyroid and sex hormones is too complicated for me to work out, but does seem to be there) so from my mid thirties.  They are derailing my life!

I appreciate that 'estrogen dominance' as an entire theory quacks like a duck, but on these days it does make sense to me.  I have gleaned the following:

http://www.cemcor.ubc.ca/resources/perimenopause-ovary%E2%80%99s-frustrating-grand-finale

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537328/

https://mthfrsupport.com.au/2016/09/her-stamine-the-link-between-histamine-and-estrogen/

Very long story short, I am not sure I can tolerate these utterly disgusting symptoms and stay on E.  It seems to me (and my own fiddling around prior to seeing the prof does seems to confirm this) is SOME DAYS I need E, some days I need P, but not sure I need E every day.

It's confusing, as I clearly also have low E symptoms at some point in my cycle.  Also, hospital did warn me that after a D&C your period can come early or late, surgery was three weeks ago, so I'm wondering whether to just stop, wait for period to come and try again?  What is the rationale for putting in more E when you are already getting high E?

Anyone else getting these baffling symptoms?  Climbing out of their skin?

Thanks

Reb

[CLKD]

Hi!  Maybe you need to see a dermatologist or endochronoligist?  To find out why you have high levels of histamine?

As oestrogen levels drop the body may become dry: inside and out - skin, scalp, legs, vagina, anus, nipples ; 4 me it's the insteps, OK all day until I take off my socks.  It was constant for 3/4 years initially. 

[Peripurple]

Hi Reb, yes I had exactly the same and to a certain degree still do.  I was put on 3 pumps of Oestrogel along with utrogestan, I am peri also so still had a break with the Prog.  Long story short I felt like I was crawling out of my skin, I couldn't sleep, the itching was awful especially my scalp, also high increase in anxiety.  I reduced to 1 pump which helped but I was still getting awful symptoms.  I came off HRT all together but still having problems with prolonged and heavy periods.  I recently decided to have the merina coil fitted which has suited me very well, and after discussion with my gp in the last month have reintroduced 1 daily pump of Oestrogel.  I'm not sure it is a case of too much of either hormone, rather an imbalance in general, I did notice even when off HRT completely I would have days of feeling very itchy and uncomfortable.   With my current regime I do have itchy days but so far this is suiting me the best.  I did have one consultant who suggested a low histermine diet, but honestly my itchy ness is now manageable enough not to give up most of my favourite foods! 

[RebJT]

Thanks, yes I don't get itching, I just feel poisoned, it's clearly a histamine overload.  It does seem more common in women with chronic disease, which I also have (thyroid).  My bones are terrible, I have osteopenia in both hips and my lumbar spine, he says I have the bones of a 70 year old woman, so clearly I do need E, just no idea how I'm going to tolerate it, as if I take through the period where my E is naturally currently high, it's just intolerable.

I already have an endo and a gynae (to CLKD) and they don't know, it seems to be linked to estrogen surges, and estrogen can create a histamine response (not that they told me that, that's my own research, in my experience hormone doctors really don't give a crap, they have a pathway, if it doesn't work for you, you're on your own).

Mirena I've refused as me and synthetic hormones don't get along and I had a terrible time on both the combi and prog only pill, so I have a feeling I'd be one of the unlucky ones there too!  I can just about tolerate utrogestan (well if you count massive water retention and feeling completely flat and groggy 'not too bad' lol)

I'm honestly willing to eat only broccoli if it'd make this stop, it's unbearable, it's like a jacked up, plugged into the mains, vibrating in my own skin feeling, I can't do anything on days like today, work, think, concentrate, even write a shopping list, my head won't work, I shake and tremble, it's horrible.

Thanks for replying, glad to know it's not just me!

[Dancinggirl]

Hi RebJT

I'm not sure I can be much help really. I did find that progesterone made me itchy but I was always fine with oestrogen. If you have a thyroid condition then this could be a factor as I believe HRT can have an influence on the thyroid so you might need your thyroid function checked to see if your thyroid medication needs tweaking ?
It might be worth stopping all HRT for a couple of weeks ( maybe worth waiting for a period) and starting fresh and only use one pump of gel per day for 2 weeks before trying to increase to see how it goes. Adding things in slowly is often the best strategy - never bombard the body with anything.
I do believe that our bodies become far more sensitive to everything when meno hits. DG x

[RebJT]

Thanks

Thyroid, yes planning on testing, weirdly too much T3 (I'm on combo T4 + T3) can increase estrogen, and lower T, and I've not long changed brands so going to check that out.  I believe it's only oral E that increases thyroid binding globulin, which can decrease circulating thyroid hormones, transdermal apparently has no effect.  I'm quite aware of my thyroid symptoms, having lived with it for so long, it's not thyroid I'm pretty sure.

And yes, I've just sobbed down the phone to my mum, stopping is the only sane decision, I'm a wreck and I have work to do (I'm freelance) so need to crack on.  I'll regroup after period and meanwhile instigate a low histamine diet and see if that helps.

I'm defo more sensitive since my thyroid was removed, and now this, it's so miserable!!!  I find it mind boggling that doctors don't know, if this was happening to men they'd have figured it out by now!

The best month I had by far lately was when I took E in the first half of my cycle and 7 days of P in the second half, I felt great - that was when I was 'experimenting' on my own before I saw the prof, I might have to work out my own regime if a retry doesn't work.

A search of this site brings up millions of threads on anti histamines, maybe lots of women have this but don't realise?

Thanks

[CLKD]

If your Specialists don't know then they should be asking others!! and not simply washing their hands of your symptoms.

As for thyroid, many GPs won't treat if blood tests are 'within normal limits' even though patients would feel better if medication was given appropriately.

[RebJT]

I don't have a thyroid and I had thyroid cancer so my GP isn't allowed to manage my thyroid, only my endo can (didn't stop an old GP literally yanking me by the arm and marching me out of the practice whilst shouting at me my TSH is too low, my TSH is MEANT to be undetectable to prevent the cancer coming back!  Bloody idiots!). 

My German Endo professor (brilliant man) left the UK as he said our thyroid treatment parameters are 'barbaric', they won't treat unless your TSH is over 10, here in Greece they'd diagnose you as hypo with 2.5 or 3, in many ways having had cancer is a complete blessing, as I'm way out of any GPs league, so they tend to defer to my specialist, plus it means I'm allowed to have T3 to keep my TSH down.  Others aren't so lucky.

And I appreciate doctors should find out, but I've been down this rabbit hole a long time.  Even a naturopathic quack who put me on prog only for 'estrogen dominance' and kept telling me me up to up the dose, then told me I was mentally ill when I felt horrific.  Honestly, nobody cares.  In my experience, specialists have a world view, and if you don't fit their miracle cure, you're dumped, fully expecting that with my current 'expert' (I've had millions of them, I must have spent in excess of thirty grand trying to find the answer) will do the same, might be wrong.

I've just emailed his clinic saying I'm discontinuing as I cannot stand the jitters, we'll see.  My plan is to restart on day 1 of my period and to try and stay in synch with my own cycle, but will have to play it by ear, and I'm going low and slow and one thing at a time, so I know which one 'did it' if I get off track.

[CLKD]

Sorry hadn't read that bit about the thyroid   

>creeps away to find reading glasses<

 

[RebJT]

Haha no worries!  It's the only bonus of not having a thyroid, I have hours of fun with GPs, they say things like 'your TSH is very low' and I say 'just remind me why I need Thyroid Stimulating Hormone, when I don't have a thyroid, what would it be stimulating?' etc etc.

[CLKD]

Do U wear an SOS Bangle to alert medics should you have an accident 

I wear a bracelet as I am a parts donor.  There are other necklaces etc.; SOS also sell tapes to print details on which fit in cycling helmets and shoes etc..  I bought Himself a set ............

[RebJT]

I've thought about it, but no, as I doubt they'd take any notice re thyroid, I have however had a living will and powers of attorney drawn up so they can't kill me slowly when I get old, and will be obliged to carry out my instructions.

[Wrensong]

Hi Reb - the PM I sent was based on your posts in the other thread you have going.  I have only just seen this one & received your 2nd PM.  By coincidence, had touched on histamine intolerance during menopause with another member a few days ago.  Will get back to you.
Wx