just wanted to get some wise opinions/advice. i think that there is no doubt i'm in peri (in spite of all the prior doubt from doctors) & i've just been trying to get through each day (with the help of PS & all of you). i have a friend whose opinion i value encouraging me to get more tests done - specifically those related to cortisol & adrenal/pituitary function. she thinks i may have a rare condition like cyclical cushings.

the endo & my pcp don't think that this is what's going on, but i know if i wanted to, i could probably get my pcp to work with me on this (i'm still a fairly new patient, but she gets all this & i think she is a good doctor). these types of conditions are hard to dx & require alot of testing, etc before i pursue this, i just want to ask a few questions.

prior to the last year, my symptoms were pretty much constant lowgrade things - always felt miserable to some degree. except for the start of the wild insomnia about 3 years ago with the 10 lb weight loss. last year i continued to have symptoms come & go, sometimes disappearing or being replaced by other things. almost the whole list that we are all so familiar with. seems like the swings were more severe & variable though. i know that the moods switch on & off, but does anyone get the physical stuff doing that as well - i guess specifically - do you have a good day, where everything is working & then suddenly hit a brick wall or have the brakes thrown on for no apparent reason (for me, it's generally head/fatigue symptoms or muscle aches). the other symptoms seem to float in & out. or sometimes i overshoot & have almost a hyper energy day (much rarer). i thought the good days were a good sign - like meno zest maybe, but had no explanation for the out of the blue off the cliff dive (peri or cortisol low?) how can you be bouncing around one second & too wiped out/head swollen/muscle aching the next to walk from one room to another?

zits come & go & i can have oily face & dry reptilian hands. i have longer temp problems that seem different from the flashes/flushes (get cold for extended period for no reason or sometimes if exposed to stressors or hot for extended period for no reason - these both happened last night: hyper going to bed. freezing in bed. hot as anything than at around 5am & continues for 3 or 4 hours). it's not uncommon for me to get pronounced energy/temp dips at typical low cortisol pts in the day, but then to have them swing about & be unpredictable. i had that wt loss a few years ago & the no reason wt gain of about 12 lbs this past august (it hasn't continued so far). i have been putting this all into the peri category, but don't honestly know if i should reevaluate.

any thoughts would really be helpful.

thanks as always,
ellen

If your Pcp doesn't have an explanation for what is going on with you then I don't see the harm in asking for test for other things it COULD be. At least if you rule things out it will make you feel better mentally about it all.

that is why i asked for an endo eval & was able to rule out thyroid. but from what i understand, diseases like cushings are very hard to dx & even people with florid symptoms go through many doctors & sometimes years trying to make sense of things & get proper care. so maybe what i'm trying to sort out is getting a handle on whether anyone has had similar peri experiences to what i have detailed. if these seem really out of range even for most of us here, then i need to really start strategizing & using my little energies in a different way. what little i seem to be able to understand is that if i am having some problems with cortisol/adrenals/pituitary/etc, it may most likely be cyclical & very hard to pin down.

thanks for the help. glad that things are going well for you. i appreciate seeing the updates on how folks are doing on the bcps. may good things continue.

best,
ellen

Hi Ellen,
I often wonder myself if there is something more than peri going on because of the ups and downs. All my symptoms seem to be cyclical, and it's so frustrating. I've never heard of the cyc. cushings. It's a thought. Wish I had a better answer for you, but just wanted you to know that I do sound similar to you, especially with the head stuff, and now have been having muscle aches, which makes it hard to continue with the gym, although I do try to push myself when not feeling too bad. It's so frustrating. Maybe would be worth the testing?. Keep us informed, I'd be interested in finding out more.
Hang in there,
Faith

Ellen, I have been going thru the same thing, for the past year especially. I wonder the same thing at times,so much at times that I make myself feel worse. Is it more than peri/meno? I will tell you this, I have had the issue with sinus/ear/eye pressure,increased headaches/migraines since this started. Since going up to 2mg. Estrace for the last 2 months, most of my symptoms have gone away. I still get slight symptoms that come and go, but not what they were. Last week I went to a new doctor, she decided to have me go back to the .05 Vivelle Dot patch. I should have know better, 3 days later the pressure and adrenal surges started creeping back, then yesterday the headache, and last night the migraine. I haven't had a migraine for 2 months now since being on the estrace. Also after dropping to the .05 patch I starting spotting again. I am now back to the 2 mg. Estrace. For now on,my thinking is if it isn't broke, don't fix it. I thought it would be a good idea to try and reduce my dosage, NOT!!! I need the higher dose right now. I hope this helps. I have been tested for almost everything, and this has been the conclusion for me. Also, I lost 20-25lbs when I was at my worst last year. I have put on 5lbs since and seem to be maintaining with out trying. I also have notice my skin is plumping up and my hair stopped falling out since being on the estrace. In the beginning, my skin and muscles started sagging badly. I was talking to my stepdaughter over the weekend, and she told me that many of the women she knows of that are going thru menopause and using hormones, still have the ups and downs big time. Feel better. I truly understand what you are going thru. Look at my posts and you wll see that I have suffered with all 34 symptoms plus about 10 or more other. I hope it all passes quickly for us!
Linda S

Hi Ellen,
Reading your post I was amazed -- I could have written it!! I have EXACTLY the same problem with fluctuating energy levels, bouncing around one minute, exhausted the next. I also get the insomnia, zits, mood swings, and the hot/cold temp. fluctuations. It has been freaking me out completely, but I know it is cyclical since I have been tracking it. This is all new for me, so I am still finding my way around. But I can tell you that I just finished fertility treatments a couple of months ago (bounced me right into peri), and I have had every test under the sun, but they never found anything wrong with me (except for my endometriosis, which I already knew about). I really believe that these awful symptoms are due to fluctuating hormones which are extremely difficult to track.

So, unfortunately, I don't have any answers, except to say that I know I personally need to take much better care of myself. I don't eat as well as I should (carbohydrates are putting me in a coma) and I need to get back to taking my supplements and exercising. It's just so hard to do when I am in my exhausted phase, as I am right now. Yuck! Anyway, just wanted to let you know you are not alone and I completely sympathize with you! This is no fun and I am so glad we have this website to help each other out!

Take care,
Emme

(((Ellen)))
I've had every test imaginable! Had a 3 hour adrenal test, it came back normal. All my tests come back normal but I feel anything but normal. Keep thinking I will just wait peri out and see if I can recover! Waiting is becoming very difficult! I'm so run down!
I don't have any advice just wanted to give you a hug and let you know your not alone!


PS: also go to bed freezing only to wake up later sweating or hot skin feeling> but yet my gyno said it wasn't peri?

Hi: I constantly worry about the peri plus as well and wonder about something going on a little harder to diagnose like cycical crushings as well.....I had graves disease and that went on for quite a while starting at age 41. I no longer have the antibodies for this disease, but yet symptoms continue. THis is one thing to check becasue if you have the antibodies - even though lab numbers are normal for FT4, FT3 and TSH (this is not as common but possible)- you still could still suffer with symptoms and may benefit from thryoid meds.... My thryoid numbers tend to fluctuate though not greatly, ...but all in the normal range....but I no longer have the antibodies and trial of thyroid meds did nothing to make me feel better....may work for you though if you have the antibodies (check for Graves antibodies and Hashimotos antibodies)

One thinkg I wonder about is if you have a low TSH and low FT4 (and there are other combinations as indicators as well) you may be dealing with a pituitary tumor...apparently these things are very common (very seldom cancerous so don7t worry) and sometimes they cause trouble and sometimes not. Here is my take on this: when during peri our endocrine system is often up and down...naturally anything associated with that system is also weak to the ups and dows of all kinds of hormones: thyroid, ovarian and cortisol etc. This may account for the changes in how you feel from day to day, minute to minute, hour to hour..our hormones are constantly changing......and for symtpoms, that may account for all the ups and downs....remember a blood test is only a snap shot in time....not the whole picture......I have these kind of changes all the time as well...one minute ok, the next head-fatigue (feeling tired in the head...is that what you meant...I get this all the time...wake up with it infact!

Testing by salivia for cortisol and ovarian hormones in the past (actually when I was feeling a bit worse) were normal, normal , normal....though estrogen a bit on the lower side ...to be expect at age 47...though not so low.

I am also debating more testing, BUT ....I am worn out with trying to convince doctors I am the "rare" case and they should test me more carefully.....and the other thing that is dissuading me from more testing are the posts of other women on this board. Over and over I have read of women getting MRIs and this blood work and that test and on and on only to have it all come back normal....afterall maybe this is just peri and we have to grin and bear it a bit....though this is not to say to not pursue more testing....

I am suffering like you every single day. I never have a day when I don't think about it becasue everyday I am foggy- headed or fatigued-headed (These are my two main sympto9ms and I fluctuate between them day to day sometimes minute to minute!!!!) it is really awful.

If you have the energy and good doctor I say go for the other tests....it will make you feel good to be doing something positive at the very least. And at the very best, perhaps more very careful specific testing will come up with something and then you can get to work on "curing" that something.

I offer you my sympathy and understanding...seriously, I am exactly the SAME and I understand your frustration....if you do find a good doc....let us know...we will all jump a boat and plane and car and darken his/her doorstep in two seconds....prayers to you, Joan

There are just too many of us having the same problems and symptoms. It has to be hormones, right?????
Linda S

I'm right there with you - same thing - same daily symptoms. I call it a hangover - because that is seriously what it feels like (without drinking the alcohol of course). I just feel "blah" pretty much 80% of the month. There are a FEW days that I feel close to normal, but most of the days I feel like I have some sort of flu bug (headache, fatigue, unbalanced feeling, nauseated, etc).

IMO, it's all hormone related, I'm afraid. Which I guess is actually a GOOD thing in that it isn't some rare disease. The problem that I see however, is that if our bodies are feeling this cruddy, something bad is taking place health wise. Our bodies are trying to tell us, "something isn't right and I am going to make you feel miserable until you do something about it! FIX ME!!"

I only hit the infamous "brick wall" just a year ago, and it makes my head whirl reading about some ladies in here who have been feeling this way for several years. That is just so daunting. I am already ready for this to end yesterday, let alone years from now.

For me, the constant daily headache is getting really OLD. I know I need more estradiol, period. But since we have breast cancer in the family, I have a feeling my doctor will not want to give me too much. Plus, I am still having my period so I'm not officially meno yet. But I just know in my gut that throughout the month, my estradiol is extrememly low and that is what causes us to feel horrid.

Ellen:
What sort of testing HAVE you had done?
Avi

oh my gosh - can i say i love all of you? thanks for such overwhelmingly supportive responses. it not only made me feel less alone, but there were so many thoughtful things that you have said. i need to read again & try to process it all. i've been really having a symptom onslaught, which i think is currently made worse by my ongoing respiratory/ear infection & the antibiotic treatment. so as a consequence i can barely keep anything glued together or utter anything coherent.

i am familiar with alot of your stories & i agree that we are all suffering together, with a high degree of similarities in some areas. i don't wish that on anyone & i am so sorry that many of you are in hormonal hell. but i'm encouraged as well by some of the good responses that some of you have gotten with certain treatments. & i understand what it's like to have had horrible responses or have nothing seem to help.

it was reassuring to know that some of the things that i outlined didn't seem way out of range for peri. or to know that some of you have gone through the same stuff. (is that the same? sorry if i am making so little sense) certainly all this misery & imbalance brings out other malfunctions if they exist, & i've always suspected something off (that drunk/head thing & fatigue - i think i've had it on & off most of my adult life, including waking up with it, always thought it was some sinus problem). but no doc has thought much of it or no testing ever showed abnormalities (except low wbc). i just never pushed anything until things got so awful. last yr at this time i had no clue just how bad things were going to keep getting. & it took me all yr to find a decent doctor.

to answer your question, avi: baseline tests run by pcp & the endo have been normal for the most part - these were basic blood tests (cbc, metabolics, etc & included hormonal levels - estradiol at 3 different points in cycle, weirdly high on day 4/around 169 mid/81 near end, fsh,lh, dhea testosterone (low). & thyroid - tsh, ft4 & 3, 2 different thyorid autoantibodies.) endo also ran 17 ketosteroids & metanephrines as well as a cortrosyn test - all ok. about a year ago i tested weakly positive for ana antinuclear ab.

the pcp thinks peri from hell (while menoexpertwoman said too young for peri, must be pmdd). but the pcp acknowledges that i am on the edge of the bell curve in general in ways we don't understand. so even if the med profession understood peri & the rest better, it still may not apply well to me. attempts to treat have caused bad reactions (horrible response physically/emotionally to 5 days on bcp) or lasting side effects (trazadone for insomnia started the tinnitus). so i've been trying to just get through each moment & see what happens. it's been a knowledgeable friend who has pushed to have me look more at cushing's etc.

just trying to write this is like climbing a mountain. can't imagine reading it. hope it made some sense. i don't have the energy to do anything right now but provide basic selfcare & get through the day, but i am trying to journal (distressing as that is) to see if there may be a pattern that would show something different than peri. i don't know. if i have an epiphany -i'm sharing it here 1st with all of you.

thanks for the abundance of hugs. i send a bunch back to all of you.

xo,
ellen

ps - did puberty really s*ck for any of you? it really did for me - including panic attacks & the worst acne, to mention a few things. but nothing like this. also, i can't believe how horrible i look some days - i avoid mirrors & just give up. looks seem the least of the problems....

Hi, hate to harp on this but exactly what were the lab results for your TSH, FT3 and FT4? I know you say the doc said normal, but can I see the numbers? Thyroid is so trick....remember by law you are entitled to copies of your labs (they may charge a small copy fee) but you should be able to get them. Joan

joan,
that's not harping at all. i was so thickheaded & miserable yesterday that i really had to struggle to articulate & just didn't want to keep hitting everyone with information.

i had bloodwork in july: tsh=1.37(range.47-4.53) & then in december: ft4=1.0(.8-1.8), ft3=2.7(2.3-4.2). also in december: thyroid peroxidase ab=less than 10 IU/mL (range,=35) & thyroglobulin ab=32 IU/mL(range<=40)

my husband, on the other hand, has been feeling tired alot & went in to the doctor & his tsh was 12.24. we're supposed to get his other results today.

thanks,
ellen

to answer your question, avi: baseline tests run by pcp & the endo have been normal for the most part - these were basic blood tests (cbc, metabolics, etc & included hormonal levels - estradiol at 3 different points in cycle, weirdly high on day 4/around 169 mid/81 near end, fsh,lh, dhea testosterone (low). & thyroid - tsh, ft4 & 3, 2 different thyorid autoantibodies.) endo also ran 17 ketosteroids & metanephrines as well as a cortrosyn test - all ok. about a year ago i tested weakly positive for ana antinuclear ab.

the pcp thinks peri from hell (while menoexpertwoman said too young for peri, must be pmdd). but the pcp acknowledges that i am on the edge of the bell curve in general in ways we don't understand. so even if the med profession understood peri & the rest better, it still may not apply well to me. attempts to treat have caused bad reactions (horrible response physically/emotionally to 5 days on bcp) or lasting side effects (trazadone for insomnia started the tinnitus). so i've been trying to just get through each moment & see what happens. it's been a knowledgeable friend who has pushed to have me look more at cushing's etc.


Ellen:
I don't think looking at Cushings is a bad idea..Also, don't accept "everything is normal"..ask for your labs and try to get tested enough to identify trends. Also, what is normal is what is normal for you..for example, I do better when my FT4 is less than 1..when it is higher than that..I get shaky, jittery, manicky..What is the ANA ab you tested positive for? Are you familiar with low-dose naltrexone therapy? I can't post the link, but you might google Elaine Moore and auto-immune disease and see what you come up with..or feel free to PM me for more discussion.
What is the reason you are thinking Cushing's? HAve you had ACTH/cortisol/urinaries/salivaries done?
Good Luck,
Avi

avi,
thanks for the input. well said about being careful about accepting things as 'normal.' i think that should probably always be in quotation marks. i've had a hard time with doctors in general, so in the past found myself not really going unless it was really serious. but i think i now have a doctor that will actually help me track things & will pay attention to symptoms & not just labs.
that ANA was from may of 2008 & says anitnuclear AB, weakly positive, titer 1:80 speckled pattern & 1:80 homogeneous pattern. sed rate-westergren 2 mm/Hr. another sed-rate was done in december & it was 8 (range0-18).
i requested a rheumatoid factor in may 2008, which was 5.6IU/mL (range<=6.0). since late 2001, i've had intermittent finger joint swelling/redness/pain (the doc at the time insisted i hit my finger......) that onsets with cold weather. it's strange in that it is middle joint, but only half of the joint. all rfs have been negative starting that year (don't know the levels) & i've had none of that stuff this year at all. any doc who has seen it has been baffled & i did see a rheumatologist a few years into who really didn't have an idea - only that there has been no joint damage.
i'm not familiar with the therapy that you mention or with moore, who i will look up.
the only reason i've looked at cushing's is that an online friend has encouraged me to do so. i have none of the key symptoms (wt gain, hump, marks). i haven't had the tests that you have mentioned (i think cortrosyn measures adrenal response). things have been of such a chronic low grade lousy nature for awhile until everything started bouncing around last year. it's the bounces, i think, that she is seeing as highs & lows. but it seems like it could be peri as well. at least i get days where i feel like - this is what 'normal' folks feel like.
truth is, i suspect that all my life i've had problems with imbalanced immune/neuro/endocrine systems for whatever reason. meaning i have always had a narrow range of optimal operating & am really sensitive in all realms. the current flux certainly underscores it. a year ago, i still wasn't giving much thought to endocrine issues, though i often thought that the field needed to overlap more (psychoneuroendocrine). & though i had numerous markers of abnormal endocrine function & a consistent history of sensitivity to fluctuations, no doctor has seemed concerned when such things were presented.
i no longer just take their word for things.
sorry to be such a windbag, but thanks for the help & good wishes,
ellen

Wow! I could have written parts of most of these posts. I've been dealing with the weird head feeling for over a year. I thought I had a sinus infection at first. Eventually I was diagnosed with Meniere's Disease but went to a clinic 3 hours away that specializes in ear disorders and found that I do not have Meniere's. The ear ringing continues with no explaination to date. I've had Ct scans, an MRI, hormones testes, adrenal testing, heart monitor, thyroid testing, and I'm sure there's more I can't recall at the moment. I have that off-balance feeling most of the time and suffered with insomnia for about 6 months. I also lost about 20 pounds during that time. Someone mentioned the head feeling...it's kind of like I feel spacey headed. I'm trying anxiety meds. and have made an appointment with a new doc. that specializes in peri. I hope she's my answer to prayer even though I can't get in until July.

Your posts sound very familiar to what I'm living through right now.

Well, I harped and got the answer...actually your TSH and FT4 and FT3 are extyremely similar to mine! (I can't answer for the other thyroid tests as I am unfamuilar with those) . So either you and I are extremely in bad shape, or in very good shape and just unlucky in peri! My "expertise" doesn't extend beyond what I already wrote and I guess at this point, all I can say is I guess I am in the same boat as you!

I have been just so tired of being head/fatigued or head/fuzzed, that like you it is sometimes hard to type here...and I work and my poor students....no way I can remember their names when I can't even remember my own...and that is on a good day!!!!!!!

Been thinking again of making the rounds of doctors, but very few are will to consider I may be the "rare" case with something not seen often. When I suggest it they give me that "tolerant" smile and do the tests, but only to APPEASE me, rather than with an honest intention to HELP me and unless I suggest it, they don't take any inititive....hard to deal with that....really, a good doctor who is will to stick it out with you, I think, is so important and a great blessing if you can find one!!!!

I sincerely wish I could be of more help...perhaps in the end, you will wind up being more help to me! I sincerely wish you the best in getting to the bottom of all this!!!!! Joan

yikes! sorry to hear that (also with ringing in my ears...). the meanest insomnia was kind of the prelude of things to come for me, but it does differ so much for everyone. since i've had weird head feelings all my adult life, i wasn't caught off guard when they got worse. but i was always told it was some kind of sinus/allergy problem. i know now that that doesn't tell the whole story - it's amazing how many women get this as a symptom.

i'm glad that you have had testing to rule out things & i hope the docs have been treating you well. i went to several when the insomnia started & got the usual stress, blah, blah, blah. totally discounted how it was manifesting. one even told me it was because i ate chocolate in the afternoon once in awhile. then i found PS & i found out how many women have these problems!

keep us posted on how you do. such a wealth of info & support here. i'll keep my fingers crossed for you on the new doctor, but beware - there seem to be few full answers to all this. i'm hoping she'll be a good medical advisor for you.

good luck,
ellen (who is currently having a symptom-fest extravaganza marathon)

ah joan,
it seems quite clear what kind of shape we are in - the boat is taking on more water than we can bail out most days. but i am amazed that you are somehow working while like this. how in the world do you teach? i am soooooo lucky to not have to be doing that right now (though i'd have these moments last year were i'd think - 'ok, i think i can do it' & then WHAM! omg how do i get through the next 5 minutes?)

very much understand the medical help scenario that you describe. it's a common complaint that i hear from everyone who has struggled with chronic/complex/hard to dx health issues. i used to think that the docs were supposed to be helping me work my way through this tedious mystery/detective novel. then i realized that it was more like a courtroom defense situation, with me defending my symptoms & trying to prove my case. & the burden of proof & initiative is on us. i'm sure i've referenced elsewhere about how each new doc appt feels like a version of that board game from the 60s - mystery date. will he be a dream? or a dud?

i appreciate all the support & hope i can extend that to you as well. if the fog lifts & i truly understand why or how it happens - you'll be among the 1st that i contact.

till then, hang in there, however which way.
best,ellen

Like perimenopause, symptoms vary among Cushing's patients. Not all patients have "key symptoms". Some don't have any of the key symptoms - their Cushing's is found by diligent doctors who are willing to run the proper tests.

Best of luck to you!

I think one of the weirdest symptoms of peri, if that is indeed what my problem is, is the ear fullness. When I hit the brick wall and woke up one morning and couldn't get out of bed because I was so dizzy, I also noticed that when I swallowed, my ears would pop as if I was travelling down a mountain. So the ear thing REALLY lead me off in the wrong direction, to the ear/nose/throat specialist, and then an allergist. I truly thought this was sinus related because of the ear fullness. But then when I later started taking the neurologist route (when my supposed "sinus problems" didn't go away), and he mentioned migraine as my problem, I started researching migraine and found that indeed one of the symptoms is ear fullness, ringing, tinnitus, etc. In fact, before I started checking out this wonderful website, I was hanging out on a different "Healthboards" website under the "Inner Ear Disorders" page and a lot of the people on there were describing many of my symptoms (fatigue, dizziness, off balance, anxiety, etc.) And now many of them also believe that it isn't inner ear, sinus, or allergy related at all. That it is all a certain degree of MIGRAINE. And of course, migraine happens to women during perimenopause, when they could have not been bothered at all during their lives with it. It makes a lot of sense. So after a year, I finally have gotten my answer! Now, what to do about it... But I am glad that the statistics show that once we reach meno, and the hormones sort of even out and become more stable, the migraines go too. The migraines are caused mainly by the FLUCTUATIONS of estradiol, not necessarily the LOW estrogen. Hopefully...

ESTROGEN!!!!!!!!!!!! Can't live with it...can't live without it....that about sums it up....and if my head wasn't so foggy, I would understand what I jjust wrote! Joan

thanks, mary. & thanks for those important points about cushing's & finding/working with competent & diligent doctors. & as i have stated before, thank you as well for the outstanding cushing's support/resource website.

ellen