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[RebJT]

Hi All

Pleased to be here.  I recently had a polypectomy and D&C at ChelWest after nearly a year of banging on the door of the NHS to get my symptoms taken seriously.  Two years of very heavy periods, and horribly jittery symptoms at mid cycle and just before my period.  Finally got bumped up the list when I had two irregular periods (long cycles, been 28 days on the nose all my life) and then a period that wouldn't stop, followed by one that wouldn't start.  On the long bleed, I took 10 days of 100mg utrogestan in the end, which stopped the bleed, but my period didn't start, which Chelwest gynae said indicated I didn't have enough of my own E.  He also said he felt I was anovulatory - I'm using ovulation sticks - I'd say he's right.  His thought was I'd need three pumps of estrogel.

Also need to add that I had a total thyroidectomy for Graves, Hashis, graves opthamology, and cancer in 2011 after TEN YEARS of misdiagnosis and then two years of mis treatment.  German Endo professor saved my life.  Took me a loooong time to get stable, and in the end I went DIY (with my endos blessing) and have been pretty stable on Natural Dessicated Thyroid hormones (the BHRT of thyroid) since about 2013.  My thyroid results are good.  Had a bit of a wobble in April and had to switch brands due to a reformulation issue, but other than that, all OK.  I also have anaemia, and heavy periods been a bloomin' nightmare, as I have to shovel in so much iron, otherwise I get jittery symptoms there too.  So I manage, but being thyroidless means I'll never be the same, 'you just take a pill and you're fine' being a woman hating lie imho!

Long story short, the NHS gave me the hard sell on Mirena (they must have asked me fifty times, including when wheeling me into theatre, despite me saying no, no, no, nope, no way! repeatedly - so much for no means no, the NHS seems to think it means maybe!) as I had a very hard time on the combined pill, and the prog only pill, and had a hideous time with prog cream a while ago (on some quack theory of a naturopathic doctor) and as I told my NHS gynae, after the thyroid hell, the NHS was never ever manipulating my hormones ever again.  He said 'fair enough' and agreed with my plan to see Prof Studd (who used to be his boss).

Saw the Prof, who said he felt my jitters were 'formication'.  My bone scan was terrible, I'm 46 but have the bones of a 70 year old woman, osteopenia in both hips and my lumbar spine.  Yikes!  No libido, tired, angry, weepy, foggy, up and down like a fiddler's elbow.  So he prescribed (like he does for everyone I think) 3 pumps of estrogel, 1 x pump tostran every 3 days, and utrogestan 100mg days 1 - 10 starting Oct 'to give you a breather'.

So far so good, except three pumps gave me vertigo, I was literally listing like a drunken sailor, and the tostran gave me a banging heart.  He called me back, said start on one pump, and build up weekly.  Meanwhile I've decanted some tostran into a little squeezy nozzle bottle and now taking a tiny pea dab every day, that seems to have sorted out the heart racing.  His nurse did tell me as someone who is 'sensitive' I might do better on a lower dose daily amount, seems she was right.

Sorry so long.  So, I'm exhausted, is this normal?  I'm also a bit shaky, sort of trembling in my arms and legs.  I went up to two pumps last night as directed and did feel a weird calm as I woke up, before the crushing fatigue started up again.

Also, when my blood results came back, my estrogen was 1,575!  I had the jittery symptoms on the day he drew the blood, so I'm thinking it's not 'formication' (low E symptom) but an excess estrogen / histmine response (I get a rash, I need to take anti histamines, I feel vibraty, like I've got adrenaline rushes, I shake inside and out, my heart races)?  https://www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/  From chatting on mumsnet, some peri women do seem to suffer more on the estrogen spurts than the crashes?  I'm defo getting lows as well, but it seems to be the highs that are hard to deal with.  I also had the jitters on the day ChelWest tested my E, and it was 1,100 then as well, which does seem to confirm my hunch?

So sorry for chapter and verse, but does it get better?  what's the rationale for putting in more E when you are getting days of high E, does it override your own cycle (happy days if it does, I feel tyrannised by my own body)?  Does the fatigue lift?

Also my hunch is I'm going to need sequential from the get go, as much as I dislike the side effects of utrogestan (beyond 7 days I get really down, pile on weight, feel foggy) as the P does seem to stop the jitters on these high E days.  It does make sense in terms of my cycle, at the point where P should kick in is when they start.

If you're still here after all that (thank you!) is there anyone else getting these E spurts in Peri?  I am for sure getting low E days as well, and I'm seeing really changes in my skin, which would suggest that low E is a problem too, but it's these foul buzzy days that are doing me in!

Thanks

Reb

[sheila99]

Three pumps is quite high to start with in peri, I would reduce to 2 and see how you get on. Peri is always difficult, you're guaranteed to have times when you're either on too much or too little depending what your own body's producing. And try to align the hrt cycle with your own.

[RebJT]

Thanks sorry, I am on one pump, went up to two last night, as he changed the regime when I got the vertigo, called me at home and said take it at night (does seem to have fixed the dizziness which has worn off when I wake up) one pump for one week, then two pumps for one week, then up to three.  Last night was first dose of two.

And thanks, that's good to know, my hunch is to mimic my cycle, I've got the buzzies today, I'm minded to take a few days of P to get me over the hump as it does stop them.  I had horrifc, terrible, vile buzziness and histamine intolerance two days ago, i had to lie on the sofa all day, if I could have unzipped myself and climbed out, I would have done, it's a foul, foul, foul sensation.

Thanks

[squeaker99]

Hi. Sounds similar to what happened to me.....I had period cycle shorter and mid cycle bleeding (which was checked out) then huge adrenaline/anxiety jitters / thumping heart/ insomnia. First GP put me on Ellestre duet which honestly made me feel psychotic , increased the anxiety and heart vibrations hugely within 24 hours.   After an urgent call back he told me to come off it straight away. Another more mature lady GP said she thought I was getting surges/peaks of oestrogen which the additional hormones were heightening. I was extremely angry to be honest. They refuse over and over to test your hormones, a GP opens a book and gives you the first thing (or cheapest to the NHS probably) which turned out to be the exact opposite of which I needed. I felt like death that week I was on it and then back to ' normal' 2-3 days later.

I don't understand why they can't do some random testing, I would willingly pay for it. I feel like it is just a complete scatter gun  ' trail and error' approach

[RebJT]

Squeaker

I hear you, fortunately I'm in Greece in the summers and can just walk into a blood lab, so intend to do just that, random blood tests on the days I get those symptoms.  I also have a high histamine reaction and have to scoff anti histamines.  Do you mind me asking, do you do anything for your hormones?  Progesterone seems to help me, although day 14 - 26 is too much for me, I do better from about day 19 to 25ish, utrogestan (which I can get OTC here in Greece) but just wondering if in peri we can do our own 'mix and match' programme?  Going off our symptoms, or whether for anything to work you have to do continuous E?

I've read elsewhere that it's really hard in peri to do long cycles as our own hormones are in the mix, I'd like to stay on a natural cycle if I can, but it's the days of high E that are impossible to bear, what are we supposed to do on those days, just skip the E, or does this mean we're not a candidate for HRT?

My sister in law has just had a hysterectomy, ovaries too, after the hard sell by her gynae (after the NHS messed up a caesarian, then an ablation, she was in hell) and now she's really struggling, they didn't even do any blood tests before they took her giblets out, and refuse to do them now.  Because I've had the thyroid experience ('you just take a pill and you're fine' my backside!!!) I'm far more skeptical of experts and bog standard pathways, because I've learned nobody cares about women and their hormones!  She's still in shock at the stonewalling, as the enormity of what she's done has hit her.  She sat sobbing with her gynae (she's 42, with five young kids) and he said 'you ought to be grateful your heavy periods have stopped, get your husband to take you out for dinner' - that is misogyny, not medicine!

I clearly need estrogen at some points in my cycle, and clearly need P at others, but I need some way to get around these E spurts without making it worse, not sure it can be done.

[RebJT]

Should add that my histamine sym[ptoms are horrendous today (today should be day 22 of my cycle, I usually only get this eaten alive feeling mid cycle and just before my bleed).  Have gleaned the following:

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

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

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

Something weird is going on, not sure I can stick with this as feel 100x worse than when I started.

[Wrensong]

Hi Reb, unfortunately I don't have time to reply at length as I'd like this morning, so just want to say do you still have access to a very good Endo?  Like you, I had a thyroidectomy (many years ago) & more recently a protracted, hellish menopause (especially the peri years) & learned the hard way that "take 100mcg Thyroxine every day & you will be right as rain" is more fingers crossed behind back than fact!  The combination of hypothyroidism & perimenopause, in my experience, can be very tricky to manage & I feel you might benefit from the two being overseen by an experienced Endo who is willing to look at the whole picture.  Appreciate, given you prefer not to do this on the NHS, this is a costly proposal when you are already seeing Prof Studd & if you are in Greece part of the year the logistics may be difficult.  However, the high temps in Greece in summer were unmanageable for me during peri (without HRT) & we had to stop going altogether, so I imagine you will really need to get symptoms under control if you are there for any length of time every year.  Sorry out of time for more.  Maybe PM me if you think I might be able to help?

[RebJT]

Thanks that's interesting, and yes would love to chat.  Thing is, I've trailed around every talented endo, they don't care!  I'm on natural dessicated thyroid which changed my life, fortunately, although have had to change brands recently and wondering if my T3 is a tad high.  If you have a recommendation of an endo in London I'd love to hear who it is, but in my experience, they just look at me and say 'we don't know'.

It's the histamine responses that are killing me, I'm fairly sure they're linked to estrogen surges, but willing to be put right if I'm mistaken. 

Will PM you.  Thanks

[Wrensong]

Hi Reb, thanks for the PM.  I will take time to read & digest your posts above, as your situation is complex.  I'll come back to you via PM, hopefully later today, or if not then tomorrow.  Hope that's OK.  Hang on in there & get as much R&R as you can.
W

[RebJT]

Thanks so much, I have another thyroidless friend, she and I joke that nothing works as expected once they've cut your throat.  Just off to the supermarket to stock up on low histamine foods, I think I'll be on spuds and olive oil for the forseeable, just would do literally ANYTHING to get this disgusting trembling, vibrating, buzzy feeling to stop!  The only bonus is it means my period isn't far off and I'll get 10 days of relief!

Look forward to your message and to chatting you.

Thanks

[Foxylady]

Hi RebJT, Thought I'd tell you a bit about myself as you may find it helpful (or not). I am 41yr, for 3+yrs I had a variety of symptoms, due to me being hypothyroid I was referred initially to Endocrinology (have been on levothyroxine for 15+yrs). I first went to GP thinking it was menopausal symptoms, discounted by GP initially as normal bloods (I now know better!!). Endo did a load of investigations for rare illnesses/diseases including a 24hr urine collection, my results came back showing off the scale methylhistamine so I was referred to Immunology. Advised after a load more investigations & trials of different drugs that I had probable MCAS (mast cell activation syndrome) this is very scarey, I joined a support group, learned as much as I could and thought yes that is what I have. Immunology asked for a repeat 24hr urine collection as despite high dose anti histamines +++ other meds to reduce mistamine ther was little improvement. Second urine was negative (I was advised it was due to the storage/transporting of the original urine to a lab down in England, I'm in Scotland that caused inaccurate result first time).
I have now after all these yrs been diagnosed as peri menopause on second regime of HRT & the majority of my symptoms have gone. I still take fexofenadine for hayfever but just once a day, nasal spray & eye drops but only sprig - summer not all year round!!
Do you know your histamine levels are definately high or are they just going on your symptoms. I was on a low histamine diet for a while also. x

[RebJT]

That's really interesting and I'm starting to think along those lines.  Mast cell disorder.  Mostly on symptoms but I had my genome mapped as I also have MTHFR and methylation issues (that's a whole other rabbit hole) so I know I'm also geneticially primed for histamine issues.  I've been googling immunologists today as it goes, as I think that's my next step.  I wonder if METHYLhistamine is related to methylation?  Must be surely?  I've had a lot of progress under a func med doc for the vit and mineral issues due to pathway problems, but wouldn't surprise me if what you're describing is part of it.  Just starting a low histamine diet in earnest, currently eating only potatoes and olive oil, as I'm SO SICK, I'll literally do anything!

[RebJT]

The trouble is I'm having, and have been having, these horrific symptoms twice a month for nearly a decade so 'naturally' in my case is 'sick as a parrot' so not sure I can tolerate continuing in this vein.  I'm also not sure I agree that bio identical hormones are 'horrible', as bio idenitical thyroid hormones saved my life.  I've been very sick for a long time, and am precariously stable at the best of times, so not sure toughing it out is the way forward for me, as something is clearly extremely amiss.

What I do wish is doctors went back to an actual proper way of practising medicine, which is a science AND an art, and actually got down in the trenches to figure it out.

I'm fairly certain I have estrogen mediated mast cell disorder, so just sent an email to an immunology clinic in Athens.  We'll see.

[Wrensong]

Jari - I have to disagree with your comment that symptoms pass quicker if you don't take HRT.  I struggled through more than decade of truly dreadful, life-wrecking menopause symptoms from the sudden onset of peri aged 44 through to 3 years post when it became evident they were STILL not stopping any time soon.  On my knees by that point, I finally started HRT which I had previously baulked at, primarily out of fear of breast cancer from which my Mum had died, but also because I already had enough on my plate managing hypothyroidism, migraine & chronic pain & feared HRT would further complicate the situation. 

I am now in my 14th year of symptoms which continue to make life difficult & for that reason I need to take responsibility for any means of improvement that may be within my power.  I have therefore just, reluctantly, resumed HRT use after a break of 15 months.  So, in my experience it is not always the case that our bodies eventually cope well enough without replacement hormones. My instinct is that those who have pre-existing conditions that compromise their body's ability to maintain homoeostasis may have a rougher, more protracted ride than others. 

One thing this forum shows us is that individual experiences vary greatly & sharing our stories, good & bad, enables everyone to consider different viewpoints and take home & try anything they feel may be helpful to them. 

I'm glad to know you are managing without HRT, a treatment I would always advise women to research & think about very carefully before starting.  Your story should give hope to those who prefer not to go down the HRT route, and perhaps to those who are considering their options, sensible cause to pause or delay a little longer before doing so. 

[Foxylady]

I agree 100% Wrensong. x