I've done everything right, still have symptoms-suggestions?

mutantfrog · 09-19-2009, 03:57 PM

OK.
So.

I was originally a good weight (105lbs, 5'1), very active, but had low blood sugar episodes, very bad cystic acne and an almost no period (typically 4-8mo in between, but when it would come, would be 14-18 days of heavy bleeding). This is when I was in my teens, early 20's...I'm in my late 20's now.

Then I gained a *lot* of weight in a very very short period of time. I was diagnosed with PCOS.

Continued my exercise as before (typically about 15hrs/week) but restricted carbs more carefully than before.

My weight continued to increase, I continued to have problems with body hair and acne. I added in a BCP (Yasmin) and had some success controlling my period for a while. They came more or less regularly--though sometimes I would still skip 2-3months completely on the pill, when it did come it was usually lighter.

Eventually got on a combo of Met (2000mg/day), Propecia (.5mg/day), Spiro (50mg/day), and some topical AB's for my skin. This seems to have worked really well. I lost about 50lbs over roughly 2 yrs--I'm about 122lbs now. Body hair is not much of a problem anymore, skin is more controlled, A1C is *much* better, Testosterone was actually low as of 4mo ago, total cholesterol down, bad cholesterol down, triglycerides down. I stopped taking a BCP (I had 2 migraines with aura)--my skin actually got CLEARER. I did notice that the last year on the Yasmin, many of my "periods" were becoming more like they did before BCP--heavier, longer, more BTB, intense cramping, etc. I also started treating a sleep disorder, which i think also contributed to my weight loss. Have continued on my exercise plan (albeit a little reduced because I work now--so more like 10hrs/week, mostly cardio and yoga with some light weight lifting) and diet plan (I eat roughly 1700cal/day, with a focus on high protein, high calcium and avoid simple carbs where possible).

Yet, I still have no period.

Fertility is not an issue to me. But...supposedly if I'm doing everything right, shouldn't I be having a period??

I haven't had one in 6mo, and have tried a 7 day course of Provera (10mg/day) twice with no success.

My Dr (says that testing for estrogen levels is not reliable, and that we should just go by symptoms) thinks my estrogen level is low and has directed me to take 1mg of estrace orally, then to try provera again in about a month. I do have a tendency to wake up "hot" in the middle of the night...however this could also be because of my current living conditions (the ventilation isn't so great in my room...does tend to get stuffy sometimes).

1wk into this estrogen treatment my skin has gone all to hell again, and the headaches are coming back. I'm worried about getting a migraine again. I think clearly this is evidence that adding estrogen is not a good idea.

Does anyone know why I'm still not getting my periods!?!? Is there anything else I need to consider? I have had my thyroid checked (about 8mo ago), it was on the lower end of normal but still normal. I have no other symptoms of low thyroid.

If my period has never been regular--even when i was at a "skinny" weight before--it kind of makes me think there is an underlying problem, or maybe something besides PCOS going on. However my dr does not seem to agree.

Any thoughts?? Suggestions?? Sorry I know this is a lot of info, but in my experience--I have to help myself if I want to see results. It was only at my insistence that my HMO would even start treating me for PCOS in the first place. I'd appreciate any thoughts, suggestions, etc that might be helpful.

Moderators, if this thread is in the wrong place--please let me know where would be the appropriate place to post these questions.

mutantfrog · 09-24-2009, 07:58 PM

bump, anyone???

Should I post this in a different forum (suggestions?)??

theOceanicSix · 09-26-2009, 06:57 PM

Have you had ALL of your hormones checked? That's what it sounds like the problem is to me, even when you were thin. I'm actually surprised you had low blood sugar and acne even though you were thin and active.
I would definitely, if you can, see someone who specializes in endocrinology.

singlemindedly · 09-26-2009, 07:13 PM

My personal take on this is this... as you're not TTC, I would go with what has worked - even when there was no period. I don't have periods, but my doctor said that if I ever wanted to TTC, we'd change the meds; so for now I enjoy feeling well and to be fair, not having a period is rather convenient

why worry about an issue that's not even an issue yet?

mutantfrog · 09-26-2009, 07:15 PM

theOceanicSix,

What do you mean that you were surprised that I had low blood sugar and acne even when I was thin?

I've been working with an endo. for the last 2 years--my insulin was WAY high and so was my T (thus the metformin, propecia, spiro, etc).

My thyroid was tested several times recently-all normal.
I can't seem to get anyone to test anything else, though. I've been told that "estrogen and progesterone vary even throughout the day" and so doing a hormone test "wouldn't tell us much". But it sounds like many other women HAVE had those things checked.

Is there anything else I should be looking for? I get the feeling that if I don't suggest something to look for it will never happen...

theOceanicSix · 09-26-2009, 08:41 PM

I just mean that usually being thin and active is what HELPS hormonal imbalances, you know? Like for me personally, I had insulin resistance, acne, and just felt "off" quite often when I was more overweight and not working out. Once I started exercising regularly and eating well (I tried Metformin but it made me sick, so I stopped), I lost some weight and everything balanced out, including blood sugar.
So for you to have cystic acne, almost no period, low blood sugar, and yet be very active - I'm just stumped.
I think it's stupid that your doctor won't test your other hormones. If you're not getting a regular period, seems to me that should be the FIRST thing he does. How frustrating for you!

mutantfrog · 09-26-2009, 08:48 PM

oops my bad I misunderstood! Sorry about that theOceanicSix!

Yeah and then thing is--the endo keeps teling me a period problem is something i should see the GYN for. But the GYN just wants to rx BCP or add estrogen...neither of them will really test. So its not just one but TWO doctors that won't let me find answers!!!

the gyn would rather take the "throw stuff at the wall and see what sticks" approach. The wall being me...yes lets run down the gambit of possibilities and test with drugs to see what "helps". How intelligent.

argh.

I am trying to get my GP to try testing some things, but he has kind of a "this is the specialists' problem" approach. Still. I think I may eventually be able to convince him otherwise.

Anyways...if there is anyone who has suggestions on what to pursue (should I ask to test anything else specifically?) I am open to suggestions

bunky331 · 09-26-2009, 10:40 PM

I was put on Spiro for hair growth, and my periods pretty much stopped. Before taking it I had almost regular periods (was keeping track on a calendar). I called my endo. because I also was feeling dizzy/off-balance. They said that is "unlikely", but if I wanted to I could stop taking it for 3 months and then restart. I felt better after I stopped and decided not to restart. I just didn't like the way I was feeling and it was causing my anxiety to increase. So low and behold, my periods started up again and they have been regular ever since.

Sometimes I think we just need to go with our instincts and don't be afraid to speak up with the docs. I am disappointed I had to stop the Sprio because I think it was helping, but the side effects were too much for me.

Good luck!

mutantfrog · 09-26-2009, 10:50 PM

Interesting! I hadn't considered that. I thought spiro made periods more frequent rather than less...initially I was on spiro (not propecia) and I had too much of a problem with low blood pressure (I fainted a few times) and was bleeding *all* the time. Hm. I wonder if because I've lowered my T with the propecia...maybe the spiro on top of it is too much. I was on bcp at the same time (a brand I'd been on for years though with no problems, so I don't think the bcp was causing the bleeding at that time). I hadn't considered that!

Thanks for the suggestion! Please, keep em coming...

Verajx · 09-26-2009, 11:08 PM

I really would feel better about all of this if you actually saw a REPRODUCTIVE Endocrinologist.

It sounds like something is seriously wrong with your adrenal glands ( acne, hot flashes ) or Pituitary Gland.

You should never see a family doctor and gyno for PCOS or anything intensive.

You need to see a specialist, because it also sounds like premature menopause, which can sometimes be stopped.

Lacking a period also means that excessive lining is building up and increasing your chances of uterine cancer.

Also, ending thought on your thyroid, have your para thyroid checked, but you need to get a Reproductive Endo, even if you aren't TTC. Because when it reaches the point where you want to, or more serious symptoms appear you will have a doctor familiar with the disease and you will be an established patient and wont have 8 months - 1 year of bull**** appointments and bloodwork that you have had done a million times.

Anymore questions ask me, I have PCOS with an adrenal issue.

mutantfrog · 09-27-2009, 12:40 PM

yes--the excessive lining build up (and possible cancer complication) plus the whole "if im not having my period then it may be affecting my bones" aspect are the *only* reasons why I'm concerned, really. I don't want to be 40 and find out I have osteoperosis-if estrogen is causing bone problems i should be on something NOW for it. And because I was told that a return of my periods would be confirmation that my pcos was "under control".

So it has been confusing for me seeing results in other areas(better skin, better weight, better blood work) but not in terms of my period. No I'm not ttc, but return of my periods should be like a confirmation that things are operating normally.

There is some family history of cancer, too--so I get a little nervous about that aspect. When I had an ultrasound a few years ago, I had (and this is a direct quote) "one of the worst cases of cystic ovaries I've ever seen in a long time!" according to Dr. So it is possible that I have never really ovulated. I started puberty very late (almost 16), too. Frankly if I could get them to agree to do endometrial ablation (why have to put up with heavy/random periods if I'm not ovulating anyways??) I would sign up for it in a heart beat. I know that doesn't solve the cancer risk or the possible impact on my bones...but still...I'd feel better...

That is a great suggestion about seeing an reproductive endocrinologist. I am going to pursue that monday morning first thing (I have to talk to my GP, to get the referral process going...etc...). I don't know anything about premature menopause or para thyroid either but I'm definitely going to look into it. The endocrinologist I'm seeing right now...I don't know if she is a "reproductive" endo per se, she deals mostly with diabetics and people with thyroid problems. I guess I need to educate myself more about this field!

Verajx, what kind of adrenal complications do you have (is it ok that i'm asking here, or should i PM you?)? Treatment??

Any particular tests for parathyroid problems?

I am ready to get on the warpath about having progesterone, prolactin and estrogen tested. I dont' care if the tests are not "conclusive", i want some kind of indicator of SOMETHING. I had a migraine yesterday probably thanks to the estrace...I just need to know or at least go through the motions before taking pills.

Verajx · 09-27-2009, 03:02 PM

I am really glad your going to look for a Reproductive Endo in your area, if you have a hard time, call your local hospital and see if you can find someone there.

Adrenal issue I have had are excessive prolactin in the past to the point where they thought I would start to produce milk ( never pregnant at that point ) Tested for cushings, but was negative. I do have micro adenomas on my pituitary gland, that shrink and grow on there own.

http://www.nichd.nih.gov/health/topi..._Disorders.cfm

Above is a great site, it gives info that is 100% correct, with starting your period as late as you did, I am surprise you weren't tested as a kid.

Treatment in the past for when there actually very large and producting prolaction has been bromocriptine, which is hell on earth for 4 days for me personally, I wont scare you with that scary pill unless you have something like it.

I don't have traditional PCOS, I don't have cysts, but I have the make up for the adrenal backing to PCOS and excessive testosterone.

http://en.wikipedia.org/wiki/Pituitary_adenoma, is some info on them.

Your pituitary gland tells your girls part it is time to start which on average is around age 9, Considering your skinny 30 pounds high and low isnt too bad. When this ALL began I was 160, and due to a underactive thyroid which seems to corrected itself I have been a stable 270 for a year, which is the first time since I was 14 that I have been able to maintain a weight.

Right now it seems whatever I am doing is working so I am planning on starting to actively lose weight and since the beginning of the fall I believe I dropped 8 pounds.

But some info I would like you to go to your appointment with :

Demand a high contrast MRI, so there able to see everything, shadows included.

Cortisol test, even if you aren't a classic cushings patient ( IE no deep purple marks )

a complete blood work up
Thyroid, TSH, T4, Free Testorone, FSH levels ( to check if you are in menopause )

and to make sure for your own sake that it isnt diabetes which can cause all this 4 hour glucose testing ( you drink a soda, and they draw blood every hour )

Anything wrong with your para thyroid is picked up with TSH and t4.

I think I covered everything, if you have any questions post here, I would like others to be able to search this. I don't know of alot of cysters with PCOS with adrenal issues.

Hope your phone call monday goes well!

mutantfrog · 09-27-2009, 03:47 PM

Thank you so much for sharing Verajx! I really appreciate it. My blood pressure is really low (always), and my sleep disorder is related to circadian rhythms--which is really starting to make me think there indeed might be something going on besides PCOS.

I'm pretty classic PCOS--very high testosterone (acne/body hair issues but no scalp hair issues), high insulin (and low blood sugar as a result) and cysts all over my ovaries. I mean, it definitely is PCOS, but not exclusively PCOS...

I was tested for cushings about 2 yrs ago--all normal there
No diabetes--A1C is now in the normal range (5.3) and has been since I started metformin, thank goodness. Blood sugar has never been high (I've had the 4hr test done several times--most recent was about 6mo ago).
thyroid has been tested several times, all in the normal range.
Free testosterone is slightly low now...it was *really* high before starting the met/spiro/propecia treatment. Like wow, no wonder I could recover so much better on doubles (when we had practice in the AM and then again in the PM a few days a week) than my fellow female teammates.

A few questions:
-what is T4?
-What is TSH?
-do you know if there's any way to test for bone health? Can they just check calcium levels? I'm worried this has been having an impact on my bone health for a long period of time.

So far on my list I've got requests to test for
-FSH
-LH
-prolactin
-progesterone
-estrogen

and a request for MRI

Anything else I should add? I am ready to go on the warpath. Thank you so much for your support

mutantfrog · 09-29-2009, 04:09 PM

well well well.

I would just like to say--I won!

We are testing FSH, LH, Estradiol, prolactin as well as my usual PCOS tests (testosterone-free and total, cholesterol, trig, liver func, a1c) and doing a bone scan thing (to see if this is really a long term problem, if it is, is there any damage to my bones yet-do i need to start osteoperosis treatment, etc).

I will definitely report back once I have results--have to wait a week or so to take the test (fasting, have to coordinate with work and other activities). Should be interesting.

I did compromise a little--agreeing to wait on any further blood tests or scans till we see what comes back with this first batch. I've never had my FSH, LH or Estrogen tested.

Thank you again for the support and suggestions!

mutantfrog · 10-07-2009, 11:34 AM

OK, some of the results are back:

Estradiol, FSH, LH, and Prolactin--all normal. Estrogen was on the low end of normal, but still normal.

Still waiting for more test results...bone scan later this week (to see if E has been chronically low, and to make sure that none of this has been hurting my bones).