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Author Topic: New with so many questions...normal FSH???  (Read 6937 times)

dogdoc

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New with so many questions...normal FSH???
« on: March 06, 2015, 03:01:06 PM »

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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honorsmum

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Re: New with so many questions...normal FSH???
« Reply #1 on: March 06, 2015, 04:58:21 PM »

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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Carlie Reval

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Re: New with so many questions...normal FSH???
« Reply #2 on: March 06, 2015, 06:49:02 PM »

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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dogdoc

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Re: New with so many questions...normal FSH???
« Reply #3 on: March 07, 2015, 01:10:44 AM »

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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Dancinggirl

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Re: New with so many questions...normal FSH???
« Reply #4 on: March 07, 2015, 08:55:29 AM »

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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dogdoc

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Re: New with so many questions...normal FSH???
« Reply #5 on: March 07, 2015, 01:12:37 PM »

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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Dancinggirl

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Re: New with so many questions...normal FSH???
« Reply #6 on: March 07, 2015, 06:17:55 PM »

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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dogdoc

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Re: New with so many questions...normal FSH???
« Reply #7 on: March 07, 2015, 07:45:59 PM »

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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dogdoc

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Re: New with so many questions...normal FSH???
« Reply #8 on: March 08, 2015, 12:30:03 AM »

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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Suzyq

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Re: New with so many questions...normal FSH???
« Reply #9 on: March 08, 2015, 02:41:11 AM »

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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Dancinggirl

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Re: New with so many questions...normal FSH???
« Reply #10 on: March 08, 2015, 08:44:56 AM »

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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dogdoc

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Re: New with so many questions...normal FSH???
« Reply #11 on: March 08, 2015, 12:02:25 PM »

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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Dancinggirl

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Re: New with so many questions...normal FSH???
« Reply #12 on: March 08, 2015, 01:01:01 PM »

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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CLKD

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Re: New with so many questions...normal FSH???
« Reply #13 on: March 08, 2015, 01:36:43 PM »

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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Suzyq

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Re: New with so many questions...normal FSH???
« Reply #14 on: March 08, 2015, 03:09:23 PM »

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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