Peri and HRT - in a pickle

[GirlScout72]

Hi all

I recently had a polypectomy and D&C at ChelWest for heavy periods, they took out one 1cm polyp and did the D&C cos they said my endometrium was 'polypoid'. My symptoms were very heavy periods for about two years, but my cycle was always 28 days on the nose, except in the two months prior to surgery (they moved me up the list as urgent) I had two long cycles, one where I had two bleeds in one month, the second lasting 19 days of bleeding. I'm 46 yo.

In the end I took 12 days of utrogestan which did stop the bleed, but my period didn't start on day 28, but day 39. ChelWest gynae said this was indicative of me not having enough of my own estrogen. However, when he tested it, it was at 1,100.

Also worth mentioning I had a total thyroidectomy for Graves, Hashis, Graves Opthamology, and ThyCa in 2011 and I take natural dessicated thyroid (after two years of hell trying to get well on synthetic thyroid hormones). I had to change brands four months ago due to a reformulation issue, so there's also this thyroid instability in the mix. I also get anaemia, which creates jittery symptoms when my iron tanks. Anyone who has had a serious thyroid problem treated by the NHS will tell you that the treatment is utterly barbaric, I'm only as well as I am as I sorted it out myself, hence me being leery of allowing the NHS anywhere near my hormones again!

I've always had wonky hormones (was parked on Dianette as a teen, always reacted to the pill, felt completely INSANE on prog only pill) but cyclical symptoms got much, much worse after thyroidectomy. In a nutshell, as well as the heavy bleeding, I get what can only be described as extreme agitation and jitters mid cycle and just as my period starts. I need to take anti histamines during this time, I shake internally and externally and feel like I'm literally 'climbing out of my skin'. I'm foggy, irritable, angry, tearful, forgetful and crushingly tired. Then it passes. I probably have about 7 - 10 days a month where I feel 'normal', the rest of the time I'm some version of shit, tired, wobbly, jittery, etc.

Obvs the NHS have done me a hard sell on Mirena which I have repeatedly refused, no chance! Instead I have been doing a lot of reading and have been to see Prof John Studd, who I really liked (thyroid patient forums are much enamoured of Prof John Lee, no offence to anyone but he sounds like a quack!)

Prof Studd also said my symptoms sound like insufficient estrogen (which is borne out by my bone scan which says I have osteopenia in my lumbar spine and both hips, I have the bones of a 70 year old woman!) and that the agitation was 'formication'. He wrote me a script for 3 pumps of estogel, 1 pump of tostran every three days, and 10 days of utrogestan starting 1st Oct (to give me a breather he said).

However, he also tested my hormones, LH and FSH normal, but estrogen at 1,575 - this is 300 points above the top of the range!! I did tell him I had the vibrating, allergic, buzzy, agitated feeling on the day he took the blood (day 12) so I'm wondering if these utterly disgusting symptoms are caused by TOO HIGH estrogen?

I'm so confused as I clearly also get low E symptoms through my cycle and know that things can go up and down like a fiddler's elbow in peri. I'm seeing changes in my skin tone too. Things are clearly changing.

Sorry so long winded, but I started on his regime and felt utterly horrific, really bad vertigo and the T gave me a really fast heart rate and made me very tired (his nurse did say I might do better on a daily lower dose than the ups and downs of 1 x 3 days). I was literally bouncing off the walls and listing like a drunken sailor. I called him, he called me back and was nicely dismissive, said it wouldn't be the hormones but to start on one pump, at night, and build up to two after a week and so on.

Yesterday, day 18, I had the MOST horrific jitters, fast heart rate, sweating, shaking, trembling, literally dithering, I had to lie on the sofa all day, I'd been awake the night before til 5am literally climbing out of my skin. In desperation last night as I went to bed and took my 1 pump of estrogel I also took one 100mg utrogestan, this morning I am NOT jittery but I do feel a bit flat, low and depressed, I also have massive water retention.

Can someone help me unravel this. Do I just need to tough it out? Anyone any idea what's going on? It's just so miserable and I feel utterly tyrannised by my own body, it's affecting everything, my work, my friendships, my self image, and on some days even my ability to care for myself.

What is Studd's rationale, that you take enough estrogen that you over ride your own cycle and get things under control? I appreciate it's only been a week, but I just feel dreadful, does it get better? What's the reason for putting more estrogen in when you've already got high estrogen (at least on some days)?

Can anyone talk me down off the ledge, as I feel really all over the show.

Thanks

@swingofthings me too, and feel exactly the same, do you get a histamine response as well, I get a red bloom on my skin like sunburn that responds to anti histamines, there is a link with histamine intolerance and too much estrogen?

www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/

High histmine foods are a no no during this time, red wine, aged cheese, cured meat, dried fruits etc, otherwise I really am on my arse for days!

Histamine is also involved in fight or flight, along with adrenaline and cortisol.

It's defo the ups that make me feel ill, I have to go to bed for a couple of days (hence me saying 'derailing my life')

I think actually this is why the quackery of 'estrogen dominance' as a whole theory has taken root, as lots of women can't find the answers with the standard response to peri. Honestly, my thyroid groups are full of women worshipping at the altar of John Lee (which is also why I do my own homework, anything that becomes an orthodoxy is worthy of critique imho!). I suspect those women are overdosing themselves on T3 (another beloved quack theory of thyroid patients being let down by endocrinology) and pushing their E up too high.

I am wondering if I'd do better with sequential from the get go rather htan waiting til October like he's suggested, as I think I need the relief of the P (much as I don't like the bloating and foggy tiredness)

@bodgeitandscarper blimey! So glad you are doing better! It's a nightmare isn't it? Did you get the histamine response as well? I've described it to my doctor as 'being allergic to being alive' or 'eaten alive by a million ants' - if I could unzip myself and climb out of skin I really, really would!

I'm only 46, missed about ten years of my life sorting out the thyroid so to now being crushed by this (when I need to be working and whacking money in the bank, I'm a good earner when I'm on form, I've got a lot of catching up to do) is extremely frustrating.

I'm scared of hysterectomy as my sis in law has just had one and is doing really badly, despite HRT, and her gynae doesn't care ('get your husband to take you out for dinner' is his advice for her AWOL libido, she's a mum of 5 and 42!).

For me, it's defo the ups that are worse than the downs.

@swingofthings The adrenal glands serve a purpose but unless someone has Addison's disease they do not behave in the way people sometimes think.

Their main purpose in women is to convert fat into estrone. This happens more post menopause when estrogen produced by the ovaries falls away.

The other purpose of the adrenal glands is to counteract stress by producing other hormones including cortisol. This takes priority over converting fat to estrone.

During peri, if we are stressed, the adrenals work hard to produce adrenalin and cortisol. The effect is they produce less androgens to convert fat to estrogen.

(So the adrenals are not responsible for estrogen 'surges' or similar- quite the opposite.)

If you are stressed, your adrenal glands work harder and you will have more hot flushes . Cortisol is something the glands send out to counteract stress- people with allergies often find they are less irritating at certain times of day when cortisol levels are naturally higher.

@JinglingHellsBells, I've actually read an article that said that the adrenal gland had an impact on oestrogen levels, as often, research will contredict themselves. I personally don't care and go by what my body is telling me and I know that the two are linked.

You offer fantastic advice to many people on forums and help many, ut I have found that you tend to assume that every women tend to experience the menopause similarly to you and that's not the case. You always refer to hot flushes. Indeed, one of the main problem of the menopause but it is not a problem for all. It really isn't for me. I only have them occasionally and although uncomfortable, I know they are very mild. I could 3ssily live with them.

This thread is evidence that for some women, the menopause affects them quite differently and yes, for some there is a stronger impact of the adrenal glands (which is what the research I read implied.

Interstingly, I've decided to try something else this week. I asked my GP to prescribe propranolol. I wasn't keen until now because I suffer from very low HR and BP and Propranolol is known to decrease it but I decided to give it a go when I woke up as so often ar 4am feeling all wired up. The effect was very surprising. My heart rate was only 52 when I felt wired up, so low, but it felt like my heart was beating very hard if not fast. 1/2 hour after taking it, I felt so much more relaxed. My heart rate remained exactly the same, but I couldn't hear it thumping. I we t back into the normal state of relaxing 5hst most people experience at this time of the night and for the first time went back to sleep.

I am not stressed at all at the moment, as a matter of fact I've never felt so happy and contented. I know that my problems is with hikes of cortisol and/or adrenalin and these are linked with the ups and downs of oestrogen.

Very interesting the relationship with allergies. I suffer from a severe dustmites allergy and need to be on antihistamines daily and I've done so for 20 years now. It controls my allergic reactions well, so would have thought my histamine levels were good.

Interestingly, having been chatting to other thyroid patients on meno matters, I think I know what ails me (and has been ailing me since they took my thyroid out) - mast cell activation.

Correlated with estrogen. Explains the histamine response (meno boards are full of women stuffing in anit histamines all of a sudden).

Often shows up at perimenopause. Correlates with estrogen flairs.

Mystery might be solved in having a name for it, not sure yet what to do about it, but glad to know I wasn't imaging it. Turns out the world expert in all this is Greek, just sent him an email, but all those papers I was googling on estrogen and histamine, seems he wrote them.

Most medical research is badly designed, I found this:

"What’s the evidence that perimenopausal estrogen levels are high?
A dozen or so studies in the last 20 years have set out to measure hormone levels in perimenopausal women. Each study reports the data and summarizes by saying that estrogen levels are dropping. Surprisingly, few bother to mention the high levels they found (2). When all of the studies are put together, and the average perimenopausal estrogen levels are compared with average levels in young women, it is clear that the levels are higher, and significantly so (3).

Let’s consider estrogen levels from 300 Australian perimenopausal women taken during the end of flow (2). The data presented as a scatter plot indicates a wide range of hormone levels. Not only are most of the levels as high or higher than the average end of flow estrogen level for 20-35 year olds but many are even higher than the average mid cycle estrogen levels (peak in the cycle) in 20-35 year olds. Clearly many of these perimenopausal women had very high estrogen levels. But what did the very good scientists say in summary about their data? “Perimenopause is characterized by dropping estrogen and inhibin levels and rising FSH levels” (2)."

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

Still chasing my tail a bit but all makes sense, now need to figure out what to do about it.

@swingofthings I don't think I mention my own symptoms much any more as they are - so far- controlled by HRT. I tend to respond to posts where I can shed some light on things, as I write for national medical websites and publications. I've learned a lot in doing so, by researching and interviewing meno consultants - I have to include their expertise in the writing. Obviously people have to make their own enquiries and do what is best for them .

Thats an interesting article GirlScout72. It is not the one I read some time ago, so it's at least two that does link oestrogen rise in perimenopause and symptoms associated with it. Someone mentioned ( I think it was you) earlier in the thread thst these happened at time they would have normally ovulated and before their period. That was exactly the same for me! It took more than a year to make the correlation. It also correlated with my heart rate dropping significantly.

Jingle, you have described your previous symptoms many times on threads. Your help is unvaluable but you seem fixated with the affect of low oestrogen and that the solution is finding the right hrt and right dose.

You seem unwilling to accept that for some women, it is not a out low oestrogen and that some suffer from very different symptoms to those you experienced. There is still so much to learn about the menopause and it seems those with the more unusual manifestation of it are struggling most to be hear and helped.

I wish I had the knowledge that I've gained now. I wouldn't have wasted my time trying hrt but instead focused on the adrenalin/cortisol affect. It would have saved me 3 years of misery.