Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: RebJT on August 22, 2019, 05:25:53 PM
-
I think there might be a God after all!
I've just discovered there is a Dr Tina Peers in Nick Panay's hormone clinic in London, and she has an interest in histamine and the menopause! If you read my other thread you'll know I've been to HELL (and I'm not quite back) https://www.menopausematters.co.uk/forum/index.php/topic,44852.msg721128.html#msg721128
Turns out, there is a connection between mast cell over activation (which I am pretty sure I have) and anaesthesia, and I've just had an anaesthetic for D&C and chelwest. In fact - by weird kismet - gynae on the day recommended Nick Panay which is why I was googling. https://ben-peers-gnhk.squarespace.com/mcad She also has an interest in complex cases (thyroidectomy, endocrine car crash, chronic fatigue). I could weep with relief!
So perhaps Prof Studd isn't 'wrong', but I did start the HRT within 7 days of having the anaesthetic, on a day of high E, and maybe my poor old body blew a fuse?
Has anyone seen her, is she any good? Her write up looks good (don't they all!)
Yours in hope,
Reb
x
-
https://www.menopausedoctor.co.uk/private-clinics
She is one of the doctors recommended on Dr Louise Newson's website .
If you type her name into the search engine at the top of this page you will see that she has been mentioned on this site before x
-
Yes, i saw her three years ago, she was fantastic, would pay to see her again if i needed to.
-
Thanks you both, I'm so relieved!!! Finally, after ten years of this (it all started when they took my thyroid out, and has gone beserk of late) I have a glimmer of hope!
I emailed them saying I'm abroad til end of Oct, but might call them and just take the next apt if it's sooner and fly home as I simply cannot carry on like this, I am eaten alive by 'buzzy' symptoms, the light bulb moment with 'reacts to anaesthesia' on her website, sent a whole load of dominoes tumbling over!
Were you a 'complex case' Tinkerbell? I've trailed from doctor to doctor for ten years, endocrinologists have no idea, gynaes I've seen have no clue, the idea there might be a doctor (and a woman too boot!) who might have a clue, is an exciting prospect!
Thanks, I'll have a search around the site.
-
That sounds hopeful RebJT, let us know how yu get on, especially interesting for me. x
-
I was just thinking about you!
I will most certainly let you know, I was starting to lose hope and as we discussed, the hope sometimes is worse than the disappointment, when I see someone new who, on paper, ticks all the boxes, the crushing let down is par for the course, but the hope I allowed myself to feel, that there might be some way OUT of this nightmare, is the thing that does me in. I truly now understand why in the Greek myth, hope was the last thing out of Pandora's box!!
One of my abiding annoyances with thyroid and gynae stuff is most of the specialists are men, and yet 90% of thyroid patients are women, and - stating the obvious - you can be the best male gynae in the world, but if you've never had a period, or a perimenopause, or a menopause, in a very real sense, you're clueless! I would truly love it if there was a female specialist out there who actually gets this.
Watch this space,
Reb
x
-
Hi,
I am also thinking of seeing a specialist in Dr Panay's clinic and the lady you mention here sounds good. I have been having peri symptoms and only recently went on low dose of HRT but that does not seem to help much, in fact, I have had borderline TSH values with thyroid playing up I think for a while now and am also hoping that someone like that may be able to help. I wish you all the best and would be interested to hear how you get on. AG
-
AG
Will do, with pleasure. 'Borderline' by UK standards is BARBARIC, we have the most conservative thyroid ranges in the world. In Greece where I am currently, a TSH of 2.5 would get you treated, in the UK they leave you til you're at TEN, it's inhumane. Did you get a copy of your thyroid numbers, do you know what your results were? Having been down that road for ten years now, happy to have a look. But yes, weird 'vibratey' symptoms, bloom on my skin, jitters, that most def seems to track my cycle happened at the onset of endocrine / thyroid car crash, I do think women's bodies are so intricately complex that it's a bloomin' scandal so many of us are left to suffer!
All the best
Reb
-
No i wasn't a complex case, mind you my family might describe me as that ;D
I saw her because of my severe VA, i had seen a NHS gynacologist who wanted me to have a womb and vulvul biopsy, he also said i should have a Mirena if i wanted to use Vagifem long term. He told me you couldn't get VA in peri and said i was in danger of womb cancer because of my use of Vagifem.
After that GP would not budge and give me systemic HRT until i had proposed tests. So i paid and saw Tina Peers who said it was utter nonsence and i didn't need the investigations, she prescribed what i needed and wrote a strongly worded letter to GP re safety of Vagifem.
I haven't looked back since and i can't recommend her highly enough she came across as genuinely caring and consultation was not hurried.
-
Really interested to hear about this Reb.
I've got to see my GP about a referral to an Immunologist to rule out Mastocytosis.
I was recently hospitalised and whilst in there I saw the Pain Management Team, as I've had adverse reactions to a long list of medications, so all I can have is Paracetamol.
There is a link to them all containing Povidone (colouring) or Magnesium Stearate (filler) or both. I do have an over active immune system too, so that could contribute.
I'll have a read of your links - thank you :)
-
It's interesting isn't (well it's absolutely horrendous, it's the most disgusting feeling I've ever had to tolerate) and scared myself yesterday reading about anaestheia, as risk of anaphylaxis, I've always had horrible reactions to anaesthesia, they can never wake me up!
Yes I have over active immune system also, had v v v v serious autoimmune disease. I've been googling, this chap, Prof Theoharides seems to be working on the link between this and sex hormones, and autism (my nephew and niece both have autism, their mother, my SiL is also allergic to everything) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3377947/
I've just joined the MCAS support group on facebook, just working out what I need to go and get from the pharmacy to give myself a breather until I can see this doctor.
Will keep you posted
x
-
Oh Reb - this sounds exciting & hopeful for you. So pleased to think there may soon be a caring female medic who knows her stuff to help get you through your nightmare. Very interested to know how you get on. Please do keep us updated.
Wx
-
Hi RebJT
I'm seeing Dr Peers, well I have had one consultation and have a follow up in September. I chose her because of her experience with Dr Panay and her new clinic in Surrey is very close to me. The consultation wasn't hurried and she did listen to my long list of problems!
The menopause has so far gifted me a diagnosis of hyperparathyroidism (and subsequent partial parathyroidectomy) lots of joint pain and a massive increase in all of my allergies. I have had asthma and allergic rhinitis since I was a child but they were both under control until 2 years ago when they both went into overdrive. I have dreadful nasal congestion which I find very debilitating.
I have been using Oestrogel and Utrogestan since April with no real alleviation of my allergy symptoms although my back and hip pain has improved.
However, my latest estradiol blood test was only 87 pmol/L which is very low considering my intake of oestrogen! So I obviously have some kind of absorption problem. So I am interested to see what Dr Peers recommends for me next.
Also I was diagnosed with PCOS in my twenties due to hyperandrogenic symptoms - acne, general hairiness and very irregular periods, which I think also plays into this whole mess!
Good luck with your quest!
It's a nightmare isn't it!
-
That's good to hear, that she's nice. And yes it's a nightmare, my symptoms seem to wax and wane, defo cyclical, hoping it's 'just' histamine intolerance and not MCAS, as it sounds like a completely crippling nightmare https://lookaside.fbsbx.com/file/Mast%20Cell%20Activation%20disease%20a%20concise%20practical%20guide.pdf'token=AWy6MDFalAcp3brlqCOVAdWeMm6Tl8QmdxGG4RGSRIICVfnrsJXFkmIgQRu134gT_Z4Otn8puZj6BV69A42TdQFjmaqwI72fp7htMwwucSq4ytPj9cgQs2_FLtc6cWJ3wwq6WlXIXdLXQaxMvoG5yk_D
Afaik my parathyroids weren't damaged in my thyroid surgery, my calcium is normal, but the allergies thing is really interesting.
Fortunately in Greece pharmacists are as good as a GP (and no arguing) so I'm now armed with a list, off to get my H1 and H2 blockers and some mast cell stabilisers to see if that keeps things in abeyance until I can get to see her.
-
She's got an apt 24th Sept in Harley Street, which would mean flying back to the UK (again, that would be my fourth trip for health stuff) but not sure the receptionist read my email properly, gone back and asked for a specific lists of blood tests Dr Peers would need to diagnose the histmaine / mast cells as it's v easy here in Greece get bloods drawn, you just walk into a lab and order them yourself (and they're dead cheap!).
I've asked that she runs me past Dr Peers, before I commit to (another) £350 consult fee (Studd cost me £800 all in with tests and prescription also, I'm going broke rapidly with this sick as a parrot lark)
Reb
Fingers crossed!
-
Thats great RebJT re the health system in Greece, although I can also see negatives in how accessible things are. Glad you've joined the MCAS group alot of very knowledgeable people, good support & access to info. Hope you notice a difference with the H1 & H2 blockers, have you started a symptom diary as I know personally I couldn't always remember day to day whether there were differences unless i had it written down on the day 'brain fog'. Your right enough seeing about getting the bloods done in Greece rather than paying even more for them back in the UK. x
-
Thanks, yes just starting a diary and off to the pharmacist in a minute to see if he's tracked down some of things I asked for. I've got Zantac, seemed to make a difference yesterday and am taking one H1 anti histamine but he's trying to find me another that's also a mast cell stabiliser. Meanwhile spoken to func med doc (starting to think she's either a) a total quack or b) just not looking at my notes properly) but she suggested the usual alternative stuff of Calcium D Glucarate and DIM.
Meanwhile, I'm bleeding to death, my period has started (first after D&C, and 12 days of estrogen, which I stopped a week ago now) and good grief, horrific! I'm so confused about what the standard protocols are for heavy bleeding (nigh on flooding yesterday) whether it's combined E & P matching your cycle, or P only. They were keen for me to have Mirena which is P only, but gah! I don't know enough about it really to know what I need. Suffice to say it's no fun being trapped in the house near the loo in 35 degree heat, watch all that iron I diligently put in all month literally go down the toilet!
It does seem that histamine has a role in heavy bleeding, but depending on what you read, some say progesterone intolerance is involved, others say histamine stimulates the body to make more E, and E stimulates the body to make more histamine, and triggers your mast cells.
I really hope this lady has some answers, as I just can't carry on like this. Meanwhile have instigated a proper low histamine diet, and going to journal that.
Thanks for kind words, I need them to today, stray kitten I've rescued is looking at me askance as I keep bursting into tears (silly video of a donkey on facebook that did it!). God was laughing when he made women!!!!
Rebecca
x
-
Well done on persevering!! Some one could do a 'thesis' on your condition which would get information in2 the public domain! A bit like MaryJane pushing vaginal atrophy into the World!
:foryou: :medal:
-
haha! I'm quite happy to be a case study if a) it sorts me out, and b) helps others, in the MCAS group I'm in if you type periods or estrogen or hormones into the search box, an avalanche of miserable women in the same boat comes up!
-
Hang on in there Reb, we are all rooting for you.
Wx
-
Ah thanks! I will keep you posted x
-
There is a drug to ease heavy bleeding. Ask?
What colour's the kitten ;D
-
He's white with a grey tail, grey saddle and grey and pink ears and a pirate's eye patch, he's 12 weeks and now named Ari (Aristotle) and I've booked him on a transport back to the UK with his mother in October (I'm such a sucker!).
If it's tranexamic acid you are thinking about, I'm already on it, and it's not touching the sides!
-
That's it! :o :-\
-
Yep I'm doing that with ibuprofen, latter meant to do something to prostoglanins in uterine lining, but also some people get histamine reactions to them (so far, I don't seem to) but bleeding is so heavy, it's not making much difference, hence other post asking about treatments, I don't understand enough, but from my research, women like me need prog I think (one lady in my MCAS group just been given Provera)
-
Will kitten need to go into Quarantine?
-
Nope, he's got a passport, so provided we're back before a crash out brexit, he'll be fine (I'm bringing his mum too). He'll arrive about 26th October.
-
It won't matter if they have Passports where we are ;)
How U today?
-
I'm OK, hanging round the house is doing me in, and last day of my period so those horrible cramps and the sort of 'crashed' or empty tank feeling, it truly was the period from hell on top of the month from hell, and I seriously hope to never go through anything like that again!
Thanks for asking x
-
Is it hot? 30 in our car earlier :o. Don't forget to drink as when bleeding one sheds liquids which need replacing. An ice lolly maybe ;-)
-
It's about forty degrees, so a complete bugger being stuck indoors. Bleeding stopped, off for a swim x
-
Hot here too. I don't fancy swimming in our goldfish pond though but do love skinny dipping ;)