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

I should add, I've tried twice to join the Menopause Matters forum, I get the first 'thanks for registering' email, and it says admins need to approve it, and then I get nothing?

It's worth knowing that Prof Studd gives everyone what he gave you according to forum posts.

(I thought he'd retired by the way?)

I can't answer your question- it's too complicated- but my advice is you either go back to Studd- you will have paid a small fortune for the treatment so far, and get some follow-up there - or see another specialist gynaecologist in London, privately- perhaps one at the C&W where they treated you before.

In the meantime you could stop the estrogen or reduce to 1 pump.

Hiya

Thanks, yes I know, that's why I'm worried. I am on one pump, sorry should have said, he put me back to one pump and told me to build up week by week, due to increase tomorrow night to two.

I've also just decanted the T into a little nozzle bottle so I can take a petit pois blob daily rather than a male dose every three days.

Lovely gynae at ChelWest recommended Nick Panay privately, think he's the head honcho there. It's worth saying that Mr R, the doc I saw at chelwest also said he thought I'd need three pumps, but God knows how I'm going to tolerate it or survive this bit to get on the darn stuff.

Thanks for replying.

I am not sure but I read that Panay is not taking on any new private patients OR has a waiting time of 6 months- he's got a website and contacts there so you can phone. There are other good consultants in the Harley St area.

Most people I know on testo do not start it at the same time as the other hormones. You need to do 1 at a time to see what's what.

If you are using gel, utrogestan and testo all at once you may feel terrible.

Why have you started Utro now when you were advised to wait till 1 October? You don't need to use it now.

I'd certainly not go back to Studd if he is 'dismissive'. There are far nicer gynaes out there to help.

Hiya

Yeah I read that about him too, but will try and find out. I took the utro in desperation and to be fair it did stop the jitters, as I suppose my (desperado) thinking was that the issue was TOO MUCH unopposed estrogen - I have used it couple of times before post mid-cycle and it seems to have seen off the jitters. Believe me if someone told me chopping my own arm off would make them stop, I'd do it, it's the most disgusting feeling in the world (and I've been to hell with my health so that is saying something!!). I slept for ten hours last night, sweet relief.

From reading around there does seem to be a connection with the swinging high levels of E in peri, and histamine intolerance, I can only get through these periods by scoffing anti histamines.

Plus, must say I'm confused why he didn't test my P.

How long do I need to wait til I start the T?

He was 'nicely' dismissive, he did listen and said I was a 'sensitive soul' and to start on one pump and build up. But what I'm not clear on is why I need estrogen if my estrogen is too high? Is the thinking you over ride your own cycle?

Thanks

You need to ask him!

Why spend all that cash and go privately if you can't get answers? If you feel he's not supporting you, see someone else.

Sorry- it's just complicated and I don't know how to help.

It's not that complicated. Perhaps someone else can help. Why do I need to ask him, I'm asking here? This forum is full of people asking questions.

Thanks

Oh dear.

Look you paid him over £300 I bet plus cost of tests.

He ought to have explained why he was giving that prescription. The fact he didn't explain if it was to override your cycle is pretty fundamental.

It is very complicated- look at the length of your post and all the detail you went into, but you haven't actually said what you are using HRT for.

Is it PMS or menopause?

Agitation and jitters when you ovulate are not peri meno symptoms.

No one I've come across needs anti histamines for that- do you mean they calm you down?

You are paying for specialist support- go back and ask all him. If he won't explain or is dismissive, find a better dr.

He did explain! I'm asking HERE, before I go back and ask some more questions, because if I don't know, what do I ask?

You have NO BUSINESS getting cross with me or telling me what to do!

My body, my life, my money. MANY gynaes give peri women estrogen, including Nick Panay, I'm asking HERE why that would be when women in peri have days of extremely high estrogen. You don't know, fine.

I'm sorry you are irritated with me, but I don't need it, I wouldn't be HERE if I didn't need to ask! FFS.

I am not getting cross with you and as for telling you what to do, you did ask for advice, and that advice was go back to your consultant.

There is no need to be rude when people give up time to try to help.

Op re thyroid, do you have a good idea of what's going on there, are you optimally treated? I'm not suggesting this is the main/only problem, just that if you do know you thyroid levels are on the nose it's one less thing to sort out. Some of the symptoms of low thyroid are similar to peri, as you probably know it can cause heavy periods etc. (You have all my sympathy, to a large extent I had to sort my own thyroid treatment too.)

Hiya

Thanks, yes pretty on top of thyroid, iron is a tad low (due to heavy periods) but not in the danger zone and yes pretty stable, the transition was a bit wonky, as they reformulated the brand I'd been stable on for over five years and me and thousands of other patients had horrible adrenaline symptoms and started sliding into hypo, but because I had cancer, I'm really vigilant as I'm TSH suppressed, so do my own private bloods etc - I switched brands in April. I've got an unspoken agreement with my endo oncologist that I don't mention the NDT and she doesn't either, and she checks me out, and so it goes! Apart from the brand wobble I've been stable since about 2013, bloods the same each time. One side effect of being dosed high enough to suppress my TSH is I will always have high levels of SHBG but not sure if this is relevant to the matter at hand!

Interestingly too much T3 can cause elevated estrogen, and low T, so I have a suspicion I'm a tad over medicated on this new brand so have dropped the dose slightly this week and will test in a couple of weeks. I live in Greece in the summers so am in the happy position that I can just walk into a blood lab and sort myself out. Also most people need a tad less thyroid in hot weather, so might just be that.

But yep, I've never been the same since they cut my throat, which is why being derailed by these peri symptoms is doing my head in, it's hard enough staying stable as it is without this. Also it's my observation that us thyroidless folks seem to incredibly sensitive to changes to anything, food, vitamins, temperature, drugs etc.

According to Mr R, my gynae at ChelWest I'm anovulatory, which is why I'm having these whacky symptoms as my poor uterus doesn't know whether it's coming or going. Prof Studd was formerly the boss at ChelWest so Mr R worked under him and told me he 'totally understood' why I was a) not having a mirena and b) wanted to see Studd, he told me it was a good idea. He also said, like Studd, that I needed three pumps of estrogen.

My hunch is I'm having the odd day of very high E, which is causing the histamine and jittery reaction. I did a lot of reading, I read the entirety of Studd's website, I've read Elizabeth Vilet, plus I've read all the stuff on estrogen dominance (think that's a crock in terms of an entire theory, could be wrong, but does seem to match my symptoms on these days that I get them). The menstrual cycle is way more complicated than the thyroid feedback loop, but from what I understand, what I think is happening is my own prog isn't kicking in at ovulation (going off my symptoms, this is why I think the P helps when I take it just after mid cycle).

What I'm trying to figure out, is how the estrogen will work to sort my symptoms, do I just tough it out? Is the thinking that it keeps you a set dose (a bit like you'd dose thyroid for hashimotos, you iron out the ups and downs by dosing the thyroxine high enough)? That's my understanding, but just trying to get genned up for when I go back to him to ask more questions.

Ta

GS
x

Bump - anyone else in Peri on HRT?

Yeah, I am in peri and I use hrt for 2 years now, no problems and no symptoms.

Ah thanks for replying.

Were you getting high estrogen swings before you started? Does HRT smooth that all out? I've only been on low dose for about 8 or so days, so guess it's not really kicked in yet.

Hi - I wasn't ovulating - charted for about 18mths or so after coming off the pill. I was getting bleeding about every 19 - 25 days like very short cycles and plenty cervical mucus, usually before the bleeding ended. If you do not ovulate, the lining comes away in patches when it is too thick or oestrogen dips, and as it does not slough off properly, there is more bleeding.

Because there is no ovulation, the feedback is telling your hypothalamus to make more FSH to stimulate more oestrogen production to induce ovulation and this makes the oestrogen levels high until a feedback mechanism kicks in and it drops. I think P Studd's regimen is supposed to provide constant high enough oestrogen levels to do that. I have seen threads on Menopause Matters and everyone seems to struggle to start with. There are some happy customers though.

I didn't have any other problems like yours, and was fine during the high oestrogen bits, but the rest was like falling off a cliff. So I went to the GP for HRT for the usual symptoms and cyclical aching. She didn't ask at all about periods but gave me elleste sequi, which I changed to femoston and things gradually settled but I kept getting blips and upped to the 2/10 which turned out to be much better in the end.

I think one pump of oestrogel is about equivalent 1mg oral so 3 pumps is probably equivalent to the higher dose preparations depending on absorption. I would give yourself time to stabilise each time you raise the dose. Personally, I think the progestogen phase does as much to help with stability as the oestrogen only phase (although it doesn't always seem like that when you are taking it!)

Have another go at getting on MM - there are lots of threads there on this.

I'm wondering if these utterly disgusting symptoms are caused by TOO HIGH estrogen?
It took me years of feeling quite miserable to come o the conclusion that my problem with the menopause has been the flux of sudden high dose of oestrogen during peri.

My symptoms are exactly what you describe, a sense of internal hyper ess there is nothing I can do about. I'm now totally menopausal and whereas it is the start of misery for many, I am gradually feeling better. My mum said that she also felt much better once her periods had stopped for good.

Interestingly, I tried hrt twice and each time, I felt much worse on it. I'm currently going through one of those restless stsgecwhen I feel my body is flooded with adrenalin, but it's still not as bad as before and I now ha e longer peaceful stages.

There's always talk about the impact of low oestrogen during peri/meno but little mentioned about the impact of sudden surges of oestrogen, although we know that peri is characterised by significant flux of hormones.

@Melroses I think one pump of oestrogel is about equivalent 1mg oral so 3 pumps is probably equivalent to the higher dose preparations depending on absorption

I've been using Estrogel for 11 years. 1 pump is 0.75mgs.
2 pumps is 1.5mgs and so on.

With tablets, a lot is lost in digestion , so a 1mg tablet might only give 0.5mgs once it's been through the digestive system.

If you've read as many threads here as me (and on MM) you'll know that Studd gives everyone the same regime. It's one of the reasons some women choose other private gynaes, (including me) as he doesn't seem to individualise it much or listen. If a dr told me I was a 'sensitive soul' when I needed real medical help and explanations, (as in 'I am giving you 3 pumps to override your own cycles') I'd never go back. Talk about patronising.

Jingling - I know what you mean - it is very one size fits all - I think I would prefer to see Nick Panay if I had that choice. He was chair of the BMS and much more up to date. HRT has seen a lot of new input recently.

The adrenaline thing is interesting, Swing. I was worse on 1/10 and fine as soon as I started 2/10. It was an unexpected benefit.

I think the high oestrogen and the natural progesterone only (oestrogen dominance) are the two extremes of managing the ups and downs in peri. For me the ordinary route worked, but I suppose harder cases require something different.

It is amazing how little information there is around how menopause happens. There is a huge variation in individuals, and so little research outside of pharmaceuticals.

@Melroses I didn't like the tone of Studd's website when I was choosing who to see and with hindsight I am pleased my instincts were right. I'm not sure the estrogen-dominance thing exists. Yes, as we approach menopause we produce more FSH to try to kick the ovaries into releasing an egg, but I don't think that is directly related to a surge in estrogen because a lot of cycles in peri are anovular. And the other thing is most women feel wonderful during pregnancy when estrogen is sky high- so it doesn't really figure.

The adrenaline thing is also a bit of a myth. Usually, the signs are linked to hot flushes and feeling anxious or having palpitations and these are due to low estrogen.

There is a good book on meno Your Change Your Choice which explains the biology of it all well. It might need a bit of revising on some aspects of HRT(I've got an old version) but overall it's very good.

I'm in peri too and have been on HRT for 6 months. It has really helped me.

Thanks all, I defo know the jitters are high estrogen as it just so happened I had them on the day both blood tests were drawn, and both times were high E, I also get adrenalin rushes down my arms, all my hairs stand on end, but I defo get the low estrogen symptoms as well (the day after I start bleeding is bloody dreadful, I looked like I've aged ten years over night, 'haggard' is no exaggeration).

I'm feeling a bit better this morning, although tired. And MM just approved my registration so will get on there.

Consultants, I don't trust any of them, ten years of thyroid woes, carting myself around pre-eminent 'experts' disabused me of any notion that anyone has all the answers, they all have a 'world view' and in my experience, they all tend to dump anomalies rather than try and drill into the detail, I'm well with my thyroid cos I figured it out myself, fully prepared to have to do the same with this. That said I liked Studd, and I didn't feel he didn't listen, when I say 'nicely dismissive', I mean it didn't upset me, he wasn't patronising, just clearly knew what he was talking about (no doubt he gets lots of panicked calls, I am a panicker, as seem incredibly sensitive to any shift in hormones, which is why thyroid treatment was a living hell) and his website made a lot of sense to me as it mirrors my experience, so prepared to give him the benefit of the doubt for now, I just dont' take anything on trust from anyone, always research it myself. I'm also rather disheartened that gynaecology is dominated by men, so I've always got one eyebrow cocked at any bloke speaking with authority about the female experience! Mr R at Chelwest said he didn't get many patients 'like me' (the nurse was sat behind him, laughing behind her hand) as I ask lots of questions, disagree, and challenge, I'm no pushover.

@swingofthings I have exactly the same symptoms, and have done ever since my thyroid was removed, and it happens twice a month, at the time when ovulation should happen (but isn't, also using ovulation sticks) and then just before my period. And I don't like the side effects of P, but I do find it stops the jitters. Thyroid and sex hormones are complexly related, and I don't have a thyroid any more, so I guess it was always going to be tricky.

Oral estrogens increase Thyroid Binding Globulin so for that reason, steering clear, as don't need my thyroid going on the wonk as well as will never be able to see the wood for the trees.

PS I once had a Greek doctor ask me if I was Greek, when I asked why he said 'you ask lots of questions, I've never ever had an English patient ask questions, they just meekly agree'

Apparently Greek patients ring another doctor whilst in the consultation with a doctor 'this Malaka is saying this, what do you think?' Maybe it's rubbed off on me!

Greek gynaecology is really good, plus all HRT is OTC, so planning on doing some research whilst I'm here, no fannying about with referrals, you just go straight to the consultant, so may well go to Athens if I can find an English speaking expert. They're big on BRHT too.

The adrenaline thing is also a bit of a myth
Says who? I don't think it is at all, although it could be cortisol rather than adrebalin. You say it is linked with anxiety and hot flushes, well these are the responses when the fight/flight response triggers.

In any case, it isn't linked with anxiety or hot flushes in my case. I suffer marginally with hot flushes.

What I feel is an extreme sense of alertness and buzzing as if all my senses were turned in tune to the max. I am especially highly sensitive to background noises, but also other normal stimuli that for me become overbearing.

I felt worse when I stopped the progesterone and returned to oestrogen only so I'll I had to be off work for a few days. I also felt worse when I had plenty of cervical mucus known to be related to oestrogen rush, ie egg yoke type.

There is no doubt in my mind that for me, it was these oestrogen surges that made me so unwell, not so much the lack of it.

I had all your symptoms during peri (except the thyroid issues). I was admitted to a&e witth suspected sepsis as I shook so muchand got a temperature with every period. Also badly anaemic and when heavy bleeding continued after fibroid removal I was offered mirena, ablation or hysterectomy. I went with hysterectomy and had my ovaries removed. I suffered from sweats and hot flushes, but all the other symptoms vanished, (no hrt).

I'm so pleased I did it and think it was the imbalances and excessive hormones which had made me so ill.