Menopause Matters Forum
General Discussion => New Members => Topic started by: dogdoc on March 06, 2015, 03:01:06 PM
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Hello ladies..been on here awhile but took me a bit to post, and wanted to thank you all for your excellent discussions.
I'm 42 and noticed these symptoms starting after I hit 40 ( think I had some period irregularity before that but I wasn't paying much attention THEN). I'm paying attention now.
Initially started with almost constant daily headaches and brain fog. Thought I had MS, Lupus SOMETHING. many blood tests, cat scans and an MRI later...they tell me I'm normal. Then the panic attacks started hitting. Hot flashes. Cold flashes ( teeth chattering cold flashes). Hands and feet tingling. Feet so cold they feel like ice blocks, vaginal dryness, dry eyes, hair loss, periods getting heavier and clottier. Peeing when I laugh ( only symptom I can even remotely find humour in). Last six months it's been insomnia ( unrelenting) and PVC's ( heart arrhythmia) plus chest pain ( this is also getting worked up).
My ObGYN tells me my FSH is normal, therefore it's NOT perimenopause. I beg to differ. Against doctors advice I started on low dose estrogen last month. transdermal.
Just wondering how many ladies out there had normal FSH and turned out to be perimenopausal anyways? My estrogen is LOW ( 129 on day 3).
Tara
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Me!
I could have written your post pretty much.
I've had heart tests, thyroid tests, ovarian cancer tests, thought I had MS, spent 7 hours in a&e with a heart rate of 130...you name it, I've had it.
FSH - normal, and at 45, I was told by my GP and various others that I was too young for perimenopause.
Today, I have seen a private women's health specialist - a guru in the world of hormone problems. She said without pause that I am absolutely perimenopausal, and that the FSH test simply shows one tiny snapshot in time...and who in their right mind would view a movie through one frame?
Perimenopause is a different story to menopause - it's a time of extreme fluctuation in hormones, a rollercoaster of ups and downs.
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Thanks for replying Tara, that made me feel better already! Yes I do feel like a pile of poo unfortunately, like you! And my brain has turned to porridge. Where are those words? Why have I walked in here? Forgetting appointments, achh! And (I realise I'm getting into this moan) I feel like I've got a hangover and the latest new thing is leg ache! And I won't even mention the bleeding......
Why does my reproductive system have to make such a big song and dance about everything?!
Thank you for reading my rant!
Bless you!
Carlie
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Thanks honorsmum. I have been a wreck for close to two years and have thought I was dying from just about everything imaginable. I have never been a hypochondriac but I've certainly begun to feel like one with the sheer number of times I've seen my gp in the last two years. Always with something new. And always crying. No wonder she wanted to give me anti depressants.
They really do start to make you feel like you're crazy when they tell you it's 'stress' and you KNOW!! there's something seriously messed up with your body and your brain.
Did this guru say anything along the lines of 'it'll be over in a year?' Lol. Are you going to try hormones? I so desperately desperately want to feel somewhat close to normal ( I have moments... They're blissful). To sleep for 8 hours. To gave my heart beat along in a normal rhythm. :(
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Hi dogdoc
Can I suggest you read Hurdity's thread about our hormonal stages and FSH etc.
http://www.menopausematters.co.uk/forum/index.php/topic,27199.0.html
It is very clear that for many of us the changes happen a bit earlier and before the actual FSH and oestrogen levels show clear signs of peri meno starting there are subtle things going on that can still seem rather alarming.
You say you have started some oestrogen against your doctors advice - what are you taking?
I assume you have had your thyroid checked ?
Are you getting these symptoms all the time or are they intermittent? Have the symptoms subsided since using HRT?
DG x
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Hi Dancing girl. Yes to having my thyroid checked ( including anti thyroid antibodies) multiple times. I've had every vitamin and mineral level in my body checked. I've had 2 CT scans, an MRI, and a stress echo. My absolute level of estrogen is in the toilet ( 129). I am not sure if my ovarian function is shot or if my pituitary is shot...my FSH is normal. It should be increased by the time your estrogen gets as low as mine. So either the bloodwork was taken in the wrong time frame to pinpoint my rising FSH or the pituitary itself is failing to signal the ovaries correctly to make estrogen. Regardless the symptoms ( and treatment ) are the same.
Against the advice of my GP, AND my obgyn I started on estradot 25ug patch last month. I tried the first month without the progesterone component altogether to see what the side effects would be. This month ( after rechecking my estrogen) I increased to 37.5. I hate to be optimistic after the last two years of hell...but so far I think there's marked improvement in just about everything.
My symptoms were far from subtle. I have been slammed with every perimenopausal symptom known to man plus I think a few my body has invented ( whole face twitching anyone?). The fact that my FSH remains in the normal is making my medical 'team' say nope not perimenopause. It's soooo hard to go it alone but I disagree ABSOLUTELY with them. I'm medical too. I've spent the last year in research. So against their advice I had to take matters into my own hands.
As my body was falling apart around me I saw numerous specialists. All with a different idea. Most with no idea. If I did what they told me I'd be on 100 prescriptions.
Panic attacks and anxiety and mood swings= put me on an antidepressant and a benzodiazepine.
Low iron ( from heavy bleeding and two periods a month)= iron
Insomnia= ambien
Mood lability ( maybe its bipolar II...it's not)- gabapentin ( they wanted to put me on Lamictal...a bipolar medication..potential for serious health consequences and massive weight gain...I'm not bipolar, have never been bipolar and hopefully will never be bipolar), I said no and suggested gabapentin myself. They told me it would not help. It helped...why? BECAUSE IT"S NOT BIPOLAR..and gabapentin can help in perimenopause.
PVC's with chest pain - nitro spray..just in case.
Add to that a bucket of ibuprofen for the daily headaches, myalgia, arthralgia etc.
The only one of the above medications that helped me was the gaba ( any ladies who cannot or do not want to take HRT should think of this as an alternative, it has none of the health improving effects of estrogen but it did help somewhat with hot flashes, anxiety and panic attacks...its a mood stabilizer). At the right dose this can work almost as well as estrogen for some of the vasomotor symptoms.
I am in Canada. I am beyond disappointed in our health care for this issue here. I am likely flying in the spring to the US to see a specialist there ( Dr. Mary Jane Minkin) who is the WONDERFUL woman who told me I likely would not die if I tried estrogen ( the doctors here wanted me to sign a waiver of liability for when I died...hows that for fear mongering). I know I am at increased risk for clots, stroke etc while on estrogen. My increased risk for breast cancer is marginal. What are my increased risks for osteoporosis, heart attack ( ganging weight and increasing blood pressure), migraine with aura ( never had these before, but they also put you at increased risk for stroke). Plus my quality of life sucked it. I"m hopeful ( cautiously)...that I've made the right decision for myself.
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dogdoc - you sound a sorted person with your head screwed on the right way. You've done your research and trying the best options as far as I can tell. Pleased to hear you are feeling benefits.
What are you using for progesterone? Have you gone for the bio identicals - here in the UK it's called Utrogestan?
Keep us posted. DG x
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Yes dancing girl. I am on prometrium ( Canada's version of ultragestan), 200 mg orally at bedtime. Because of my extreme symptoms my OBGYN's preference would be to 'shut down' my ovaries completely with a drug called lupron ( GnRH). This causes you to go into a chemically induced menopause ( I still have periods). I would then 'add back' estrogen and progesterone. The pros to this are that there would be no more fluctuations in my hormone levels. No fluctuations= improved symptoms BUT there are many possible downsides. There is some evidence that you will have bone loss despite add back hormone therapy. Some women have extreme mood fluctuation during the first 6-8 weeks ( I just know I would be one of them).
It would require an injection of the medication every 28 days or every 3 months until i hit the age of natural menopause ( so another decade). There are NO ( zero zip nada) studies done on the long term health consequences of long term GnRH. It would also shut down my production of testosterone ( which I'm OK for so far). So many scary things.
You can also shut down your ovaries with birth control...I'm not a candidate. I have migraine with aura ( new thanks to the perimenopause). There is a fairly strong belief and some studies to back it up that birth control plus migraine with aura plus over 35 = stroke!! So no go.
I'm waiting on the results of a study being done in Colorado on whether you can shut down your cycles with 50 ug transdermal progesterone and a mirena IUD...the study is finished but the results are not published. This would be of GREAT potential benefit to women like myself..women who cannot take birth control to get through perimenopause due to increased clot risk, but who still need something!! to get through. Many of the OBGYN's that are up to date ( including Dr. Currie I believe) are proponents of mineral plus estrogen in perimenopause.
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Sorry that's 50ug transdermal estrogen, and a mirena coil.
Should be interesting and might prove very useful to girls like me ....
https://clinicaltrials.gov/ct2/show/NCT01613131
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Hi dog doc I'm also in canada and started hrt after seeing a private specialist! I also went down the route of mri's (brain and neck) ent (labyrinthitis? Menieres?), psychiatrist (stress, anxiety - try daily benzo's - no thanks), heart specialists (high bp and palpitations) and would have been rattling with all the hinges they wanted me to take! I did ask innocently whether it might be peri and should I not consider hrt (after 3 years of intolerable symptoms) to be told "we don't deal with hrt" - at that point I saw a specialist! My progesterone was non-existent and later my estrogen fell to 15 (less than a man has, as he specialist said - no wonder you feel terrible!)
I can now happily report that I, for the most part feel great.... I have odd blips when my own hormones are chipping in but life is bearable and even fun again! I would not have considered having my own hormones suppressed as I believe that after several doses they do not like to keep doing this and then you're looking at permanent options! I also agree that I think this has the likelihood of making everything much worse - the idea might be good, but in practice it doesn't work! A lady on this site has had temporary suppression of ovaries and is suffering terribly.
I am also high risk for strokes etc due to type 1 diabetes but have increased from estradot 25 to 75 with no problems and my estrogen levels are still low - but manageable around 165. I wish you luck in your journey
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dogdoc
Whilst I think it helps to some degree to have a science or medical background, no amount of analysing gets away from the fact that the meno is an enigma - this is why it is often so difficult to treat. Why do some women seem to sail through whilst others have every symptom in the book and more.
I do think you are right that the peri stage can be particularly challenging with the fluctuations in the hormones but here in the UK it is now the preferred option of many gynaes to give women the Mirena with oestrogen in either gel or patch form in their peri and post meno stage, as it is delivering the progesterone (that can often bring it's problems) directly to where it's needed with minimal systemic absorption. It will often deal with problematic bleeding that can occur in the peri stage with the added benefits of being a contraceptive (which still needs to be addressed through the peri stage) plus it generally leads to the cessation of any bleeding at all. The transdermal route of using HRT is now deemed to be preferable and more efficient particularly as we get older and many women don't absorb the hormones well in pill form anyway.
Some women still find the Mirena affects them more than it should - I certainly found I felt sedated for the first few months with the initial burst of progesterone, however, I had mine fitted in post meno and I may have been so atrophied around this area by then that there was more systemic absorption.
I think that with the right balance of hormones one can generally control the fluctuations through the peri stage.
Bio identical progesterone seems to bring fewer side effects and is often described as 'breast friendly' by many professionals - so this is my preferred option at the moment.
Keep posting.
DG x
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Thanks so much suzyq and dancing girl. You're right DG I've been trying to 'science' myself into normalcy for 2 years without success. Lol. I just keep feeling like if I just keep researching I will find an answer. But that's not how this works. :P
Suzyq you give me great hope. Where in Canada are you located and where's your s
Specialist? Lol. My 'specialist' is the one who wants to shut me down with the gnrh..at least she's the first to acknowledge it is actually hormonal. None of the others did.
Was your 165 level on day 3?
Before I started hrt my estrogen was 129. It went up to 140 on estradot 25. Now I'm on 37 but going to give it two months before I test my levels again. Just finished my first round of prometrium and seem to have weathered it ok. Little anxiety. Some pvcs at night but otherwise maybe better than normal. Do you know how long to wait before deciding to go up on the estrogen?
Thanks a bunch ;D
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Adjusting your oestrogen dose will depend on your symptoms. Ideally you need to be on just enough to control you symptoms and as your own levels drop you often have to increase the dosage. I never used more that 2 pumps of Oestrogel per day. With patches you can just go to the next level and see if it helps.
It's all trial and error I'm afraid as we are all different.
I'm very post meno (I'm 59) but when the gynae started me back on HRT he wanted me to have my oestrogen level at around 600!!! After 4 weeks into the oestrogen I got to 475 and he said I could increase the dose if I wanted to but at my age I am content to stay at between 1-2 pumps per day and keep my oestrogen level a bit lower as long as my symptoms are under control.
Your oestrogen levels are very low and I would be concerned about my bones if I were you. DGx
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Having read the thread it's answered my earlier query to you ::)
Glad you found us >wave< …… we are Mine of Information on here ;) and if you have the opportunity of flying South, then do so and let us know how you get on!
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I'm in montreal as is the private clinic I go to! I believe my estrogen and progesterone were measured at around day 20 - of course once you're on hrt it's largely irrelevant as in theory your levels should be more stable. I was put onto a conti regime after a few months and got on great with that but had to stop as unfortunately progesterone increases insulin resistance and I was finding it hard (even increasing my insulin by 300%) to keep my blood sugars at acceptable levels. I now take cyclically but my specialist strongly believes we need good levels of progesterone for well-being and brain function! Not everyone agrees with this but for me, it worked!!
To be honest I increased roughly every 6 weeks but an increase from 25 to 37.5 patches is really very small and at your age is probably not enough! I went from 25 to 50 and then to 75! I have dabbled with 100 (specialists recommendation) but personally I found it too much. When I increase I always feel crappy for a week - jittery and fast heart rate but then it settles in. If my estrogen gets too low I can tell immediately as I start having brain zap thingies - sometimes I will then increase my patch by an extra 12.5 for a few days then drop back down again. Don't be bothered too much about the dose - it depends what you absorb - I seem to have difficulties getting enough of anything into my body but others absorb well and are on much lower doses.
Hoping you continue to feel better and better!
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Hi dogdoc
Just catching up as have been away so :welcomemm: from me too....
I see you are beginning peri-menopause at quite a young age and sorry to hear about all your symptoms.
Also that you've obviously read up a lot about menopause, interested in all of it and what's happening to your body, and wanting to take control - good for you!
There are so many points in your posts - firstly the bit about stroke risk etc. At your young age, taking HRT is not thought to increase the usual risks cited, and you should replace oestrogen until at least the natural avergae age of menopause of 50-52. As Dr Currie says on this site at age under 50 the benefits exceed the risks: http://www.menopausematters.co.uk/balance.php
If you want to read a scientific paper about menopause, diseases and risks of HRT (and I see you like that sort of thing :) ), there was an excellent summary paper published to mark World Menopause Day last October and was posted on this site, entitled "Prevention of Diseases After Menopause" http://www.imsociety.org/downloads/world_menopause_day_2014/white_paper/wmd_white_paper_english.pdf
Re stroke it says " .... the risk of stroke from MHT (menopausal hormone therapy) is rare and of the same magnitude as seen with other medications such as statins and aspirin used in the prevention of CHD in women. When initiated in women < 60 years old and/or < 10 years since menopause, the benefits of MHT (menopausal hormone therapy) outweighs the risks, as MHT statistically significantly reduces Coronary Heart Disease and all cause mortality.....". The discussion is quite complex relating to different ages of treatment (with HRT), and age since menopause and re-analysis of the WHI study data. If you haven't seen it already I'm sure you will find it interesting reading :)
Regarding oestradiol levels - I see you've had several measurments at the same stage in your cycle. Just to check that we're all talking with the same units of measurements as in UK the units are pmol/l and in US they are pg/mol - not sure what they are in Canada but from the figures you've given it does sound like pmol/l?
Even so - is that really low for Day 3? It looks to be within the range for Day 5 which would be higher than Day 3?
I am interested in the idea of being able to shut down a cycle at 50 mcg estradiol too. I can't imagine how this would happen although my knowledge about the detailed hormonal changes is rudimentary!! I mean the pre-ovulatory peak is enormous and I would have thought 50 mcg wouldn't have an appreciable effect on the cycle to switch it off completely but would be interested to have a mechanistic explanation (if I could understand it ;D ). I thought the Mirena worked by protecting the endometrium rather than having any systemic effect - but will be interesting to find out....
When you say you are taking oestrogen against the advice of your doctor - I mean I presume you have persuaded them to give you a prescription for it rather than self-medicating? In UK as you've probably read many GPs who are not specialists do not recognise some women's symptoms as being due to perimenopause but many specialist gynaecologists do - from menopause clinics or privately. Unfortumately there aren't enough of these available to women on NHS so many women have to argue their case with the doctor (or pay for a private consultation) and the outcome is very dependent on how open they are to being educated!
It sounds like your symptoms are abating through your treatement, and as Suzyq says - I do hope this continues! :)
Hurdity x
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Thanks so much ladies.
Hurdity the 129 was day three estrogen. I never got a middle cycle peak one until after I started on the estradot 25 and on estrogen it was 500. Yes that us pmol/L same as uk.
Yes my doctor prescribed it but not too happily. She knows nothing about hrt and certainly not when it comes to perimenopause. The obgyn says because my fsh is normal it's not perimenopause
And that I have enough estrogen. When I asked about low estrogen symptoms like vaginal dryness, dry eyes, irregular cycles, heavier cycles, headaches, insomnia etc she says she doesn't know. Maybe stress. She thinks maybe severe Pms or pmdd but this doesn't explain my changed periods , cycle length , vaginal dryness etc.
When I show them the symptoms chart I keep showing marked worsening if symptoms at the expected time of ovulation and then the week before my period they shrug shoulders.
Are these not low levels of estrogen? I have 129 as bring nearly menopausal on my chart and 500 at mid cycle peak being the peak if a menopausal woman on estrogen.
You think maybe I've jumped the gun? I'm pretty miserable no doubt and might sell my soul for. Full nights sleep.
Tara
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Nope. You know enough about medications to be guided by how you feel, not a Doctor who has no idea about menopause! Let us know how you get on!
Tell your obgyn that many Consultants in the UK don't use hormone blood tests because of the irregularity of results, they 'go' on symptoms only!
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Thanks CLKD. It's really hard. I would like a doctor to look me in the eye and just say yes, it's absolutely perimenopause. The anxiety of not knowing for sure and having no doctor back up my suppositions is increasing my stress exponentially. Hence my desire to go see the specialist in the states.
If it's not perimenopause then I have a chronic neurologic disorder, with a psychiatric component that no one is able to diagnose.
Peri seems like it would be the obvious answer :(
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Peri is more likely ;) as when you are feeling logical, you know is true! Hopefully now you're here, with us, you will be more relaxed and able to ask questions, the answers of which you can take back and use to your advantage ;)
Why do GPs go into the profession if they aren't interested in at least being sympathetic! we all need to feel validated and not being a nuisance when we walk into the surgery!
We have a thread - what have you done today - that you might like to join in with ……. and have you read about The Strange Woman in My House? ;)
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Thanks CLKD I will check those out. I already feel better after coming to this site.
The support of so many women going through the same is extremely beneficial. Particularly when I'm not 'in my right mind'. :)
Tara
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Hi dogdoc
Apologies if my post didn't come over very well - as I was very tired having worked away at the weekend and went through your post trying to give any info or comment as I thought helpful or as I understood!
It really does sound like your doc is not clued up at all - and you were seeing a specialist too? Surely anyone could see that if you are having irregular cycles and a lot of those other symptoms that this is due to your entering early menopausal transition - or maybe late reproductive phase if the irregularity is only slight at this point. Also I understand that FSH is extremely variable anyway so how can a doctor rely on this measurement alone and deny symptoms?
The information on this site says it all:
The diagnosis of menopause and the menopausal transition should be made from a combination of factors with most emphasis being placed on the pattern of periods and presence of menopausal symptoms. In the late 40s, early 50s, the absence of periods or infrequent periods along with symptoms such as flushes and sweats can alone be used to diagnose the menopausal transition and blood or urine tests are unnecessary.
http://www.menopausematters.co.uk/diagnose.php
If you are having symptoms which are being alleviated by taking oestrogen - then surely that is the answer? Are there no specialists nearby that you can see without having to take the drastic step of flying to another country?
I do hope you manage to find a way of acknowledging your current hormonal state and continue to feel better :)
Hurdity x
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It would seem that Canada is short on meno support :(
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Short on meno support. Lol. Yes absolutely.
I've spoken with 4 obgyn's and had 4 answers. Although most agree it's hormonal they don't agree on how to go about 'treating me'.
My local obgyn wants to chemically shut down my ovaries with Lupron and do add back hrt with combo continuous. I asked if this was successful if I could get a total hysterectomy. No. She would keep me on injections for a decade or so until full menopause.
Second obgyn ( still in canada) would shut me down with Lupron and add back estrogen only. If I was going well on this after a few months he'd do a complete ovariohystetctomy.
3rd suggested mirena or ultrogestan with low dose estrogen patches and increasing until symptoms are controlled. 4 th was Dr currie on this site whose suggestion was similar. I tech to believe the last two recommendations since these women 'specialize' in meno. I'll give it a go.
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>wave< [how's the weather?]
" …… a decade or so until full menopause …… " that would be when exactly ::)
I would 'go' with Dr Currie's suggestion ;) - then let us know how you get on! Why would a Medic want to 'shut down' ovaries when they are going their 'natural' way ……. it happens eventually. You are probably in peri-menopause stage so need to protect heart and bones!
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Yes dogdoc - If Dr Currie has suggested the Mirena with oestrogen in patch or gel form I would go with that. You could try the micronised progesterone first of course to see how you feel. The beauty of using Oestrogen gel is that you can adjust the dosage - starting low and then increasing gradually till you feel good.
I think shutting you down or having hysterectomy is a bit extreme at this stage. Let us know how you get on.
DG x