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[RebJT]

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

[CLKD]

WOW! So peri then.

The more I learns, the less I knows  .  Hopefully she will call a conference at Nick's Clinic to make put this subject into their domain.

Mast cells do what exactly ........... 

What does your diet consist of and how long do you need to keep on it?

Did you have to pay for this treatment or is it available on the NHS? 

[RebJT]

I know but honestly, for me with my autoimmunity, it explains a lot, and histamine is also part of fight for flight, so you can get into this spiral through trauma and stress, which also answers lots of questions https://www.immunology.org/public-information/bitesized-immunology/cells/mast-cells

One of the questions she asked me was 'how do you feel when you get a cold'? and I honestly feel DREADFUL, no chuck a lemsip down the hatch and soldier on, I have to take to my bed.  This is because the mast cells in fighting it off release a load of histamine, which is why many cold and flu remedies contain anti histamines!

If you just google 'histamine intolerance diet' that'll give you an idea, but plain food, no citrus, vinegars, processed food, cured meats or old cheeses, no dried fruits or certain ingredients (no tomatoes, or stinky cheese, or booze, boo hoo!).

She is in the meno clinic at ChelWest but it's a year wait so I hear and I'm also in a mast cell group and as far as I know people have mixed experiences going round the houses of immunology, neurology, endocrinology, gynae etc.  I can tell you the group is PACKED with women having horrific gynae and period issues!  I think they are still working out diagnostic criteria.  Dr Peers has an interest as her daughter had it and she had to figure it out as they couldn't find anyone to join the dots.

So I paid, so consult fee (obvs was able to re-use all Studd's tests and Dexa - think histamine is involved in bone loss also) and then prescription fee, I already had all the E and T so I paid for the prog, and all the other drugs she prescribed which was about £100 (would have been £200 if I'd bought all the HRT at the same time)

Worth it though, when I said 'something catastrophic happened to me when they took my thyroid out' she nodded in sympathy, I really liked her.

[Wrensong]

So good to hear you've finally seen someone able to make sense of it Reb.  Hope the diet, HRT & other meds mean you are soon very much better.  Thyroidectomy certainly can be quite something for the body to deal with.  Mine is still trying to get to grips with it 25 years on!  Now no ovaries either - how many more bits can they take away & leave me standing?
I wish you all the best.
Wx

[RebJT]

Don't blame you if you can get away with it.  Might be worth getting a prescription dose of antihistaines, most OTC is 10mg, I'm on 180mg morning and evening H1 and 300mg H2!  I'm so symptomatic, I'm willing to try anything including bland food.

And yep shows what a male dominated profession gynae still is that they still haven't figured this out yet.  In fact the mantra is so wedded to 'LOW ESTROGEN' being the cause of all our woes, they even ignore the data that proves in peri that that is not true.

[RebJT]

Thanks Wren!  It's definitely the missing bit of the puzzle, these whacky symptoms I've had all my life (had a lot of trauma too, the worst of that is when my thyroid went beserk) but they got sooooo much worse when they took my thyroid out.  Wouldn't surprise me if their barbaric 'you just take a pill and you're fine' studies were all done on men!

[CLKD]

It seems like this should all be under one roof! with all consultants, Labs., plebotomists etc. in the same buildings.  Hopefully eventually it will be.   Someone could get a Thesis too!

[Wrensong]

had a lot of trauma too, the worst of that is when my thyroid went beserk, but they got sooooo much worse when they took my thyroid out. Wouldn't surprise me if their barbaric 'you just take a pill and you're fine' studies were all done on men!

  I've wondered about that myself, Reb.  I didn't get to see an Endo until some years post-thyroidectomy & then, still unwell, I had to repeatedly ask for a referral before it was agreed, "uncomplicated" hypothyroidism being deemed manageable by GP, as you will know.  As it turned out, mine wasn't uncomplicated, being one of the 15% of patients who can't adequately convert Thyroxine into its usable form.

Op had been done by a general surgeon I was later told had a special interest in breasts (what male doesn't ?!)  After he'd noticed I had a goitre when I was attending his breast clinic.  I had asked my then GP some months before whether my (classic) symptoms that had led me to resign from my job, could be due to hypothyroidism & he'd said no. 

After surgery, Endocrinology opinion being apparently the last thing on any medic's mind but mine, the surgeon himself put me on 100mcg Thyroxine - considered standard dose for a woman my size & age at the time - saying "you'll be right as rain" & discharged me. 

Quite a few years later, still only well enough to work 15 hours a week, when I'd never been anything like "right" since & as a consequence was attending one of many clinics of various specialties for investigation, a very clever & compassionate Neurophysiologist explained the muscle spasms I'd pitched up with by saying "it's your thyroid".  Having been led to believe that if I was on Thyroxine, my body should behave as it would with an intact, healthy thyroid, I naively replied that it couldn't be, as my TFT was within range.  His response, along the lines of Thyroxine cannot do all a healthy thyroid does, was the most enlightened thing a medic had said to me to that point & at once relieved me of some of the guilt & shame of years of wondering why can't I get well?

I wouldn't want to give anyone newly diagnosed & reading this the inaccurate impression that all thyroid disorders are hard to treat, but I would say that it can be little short of a catastrophe for those hypothyroid patients who do not fare well on Thyroxine, that there is still such widespread ignorance about the condition among those we have no choice but go to for help.  Unless we are lucky to be referred early on to a good Endo, the only way out of the bewildering maze is to become well informed in order to be our own advocates & push for the help we need.  I know from your previous posts you too have had to do this Reb.  Throw menopause into the mix & all hell's let loose.  It's a lonely road to walk, so I'm so glad to know you now seem to have a knowledgeable medic to go along with you.  Well done for persevering, you deserve to enjoy so much better health for your efforts.  Please let us know how you get on.  My heart goes out to you.
Wx

[Maryjane]

Just be careful the histamines don't dry up the vagina also as there job is to dry up all mucosal membranes of which the vagina is one.

I have heard of others who have seen TP and diagnosed with mast cell issues also.

Hope you start to see improvement also and good to see a HCP thinking outside the box. 😊

[Peripurple]

I saw TP, and I was diagnosed the same mast cell disorder within 5 minutes of speaking with her.  Prescribed a huge amount of medication, and my vaginal irritation very much  dismissed. I know quite a lot about this subject as my son was born with a solitary mastcytoma.  I did not start her regime as I didn't want to take such high doses of anti-histamine while I had the vaginal problems, which subsequently Vagifem has helped enormously.  I was concerned being diagnosed without any specific testing, when it is actually incredibly rare to have a mast cell disorder.  However it is obviously really helping you, And it is great you are feeling better. 

[CLKD]

I sit here in tears.  We are a Mine of Info.  ++

[Wrensong]

Oh CLKD 

[CLKD]

 

People don't have to suffer ...... if the medics were to get together and not be so precious about their own speciality and learn to listen 

[Maryjane]

Yes peripurple it's not a 5 min diagnoses and is becoming more popular the diet is very restrictive and I know of a dietician ( 20 + years experience degree educated who says she is seeing the diagnosis more and more she says it is incredibly rare).

[Maryjane]

Also ranitidine has a big ? Over it as it's been withdrawn I thought from the U.K. ( already the US ) due to an ingredient in it, unless they have changed there mind.