Inconclusive labs, So discouraged ladies :(

Women's health
1

Sorry to vomit on you all. I have had symptom's for 18 months. I have gone to so many dr's. It wasn't until the last 8 months that I start noticing a direct connection with hormones. My symptoms have been so bizarre and crazy. Depression that pops up after my period ends, fatigue, muscle pain, strange skin feelings that hit post ovulation, a weird off balance/strange out of it feeling, derealization, irregular cycles, anxiety, insomnia, sore breasts, random ear ringing, zero sex drive, dry eyes, dry skin on face, hot flashes and night sweats during my period, bloating, upset stomach, and the list goes on...all my symptoms fluctuate on and off. And they change month to month.I usually feel much better after ovulation. After my period starts is aweful.

Other than a full body scan I don't know what other test I should take. I had my month long urine hormone test come back today and I was within normal range. My estrogen was at the very low level of normal at the beginning of my cycle. My progestrone was high at the end. I didn't fall out of range on anything but was close. I'm so discouraged the tests didn't show anything. I just want my life back and feel good again. If this isn't hormones then I have no clue what else to test for. Anyone have the same experience and then end of finding out it was hormones later on. I just want an answer. This feels so awful. I am 37. Too young for this junk. My mom was having symptoms in her early 40's and has a hysterectomy. Just at a loss ladies and venting on her 💔

2

Hi Lisa, did u have your thyroid checked? I had all same symptoms as u I'm 47 but my mum stopped at 42, I was in our out of docs and a and e twice with very bizarre symtoms, everything came back normal, so they suggested FSH test which showed on the lower high range which means I'm in perimenapause, I was glad to finally have an answer but it's been horrendous so far and started suddenly x

3

Hi Lisa,

Have you been tested for viruses? In particular EBV? If you had mono as a teen, EBV stays dormant in your body and can come back and strike you when you are under stress. The symptoms are bad. I’ve had all of your symptoms, not sure what is EBV (I do have a reactivated case) or peri. But I’m 53 and def peri. I’m so sorry you are feeling this way. I totally understand! My body had been scanned to the moon and back!

XO

4

Hi Lisa 

 Certainly sounds like peri to me I have all th same symptoms as you I am 49 and my blood work showed normal my gp said testing hormones isn’t reliable because hormones fluctuate so much but because of all my symptoms he felt I was in peri! My mother stopped hers at 48 and I will be fifty this year so I can’t even go by her it is very possible that your starting perimenopause I would have your thyroid checked because that can throw your other hormones off I understand your frustration peri is ridiculous I say it’s like going thru puberty and pregnancy at the same time you just never know when your going to have a good day it was subtle for me at 41 the last three years have been a nightmare and add very bad cramps to your list of symptoms and that’s me tho I always had bad cramps they just seem worse now we are here to listen when you need to vent 

5

Lisa,

I have all the same syptoms as your except dry eyes, but maybe a couple of more that hopefully you don't get. I started at 40 and am 46 now. I didn't have the extensive tests you had, only had blood tests which did include thyroid, all came perfectly normal except my B12 was too high (funny because that probably the one thing I haven't taken to feel better) I gave up going to the doctor anymore than going for my yearly tests. As hard as it is I've learned to stop panicing over these crazy syptoms even though I agree totally agree with you I WANT MY LIFE BACK as many of us woman on here post about.

I totally agree with you that 37 is quite young, but I have a friend that was post menipose by 40, it may be just your genetics.

I really hope you figure something out that works for you.

I always wish that I had some great advice when I can tell another woman is upset,scared and suffering but all I have is to let you know I totally agree and you are not alone in how you are feeling.

6

Hi Lisa.

I'm 42 and been experiencing perimenopause symptoms for about a year and a half. I had absolutely no idea what was happening and didn't even know about perimenopause.

I've had my hormone levels checked a few times but they always come back within Normal range. Its madness.

Doctors have told me that these tests are not reliable and that they go by symptoms more than anything.

It is definitely possible that you're going through perimenopause. You know your own body. Also, genetics.

Like you, my mum and gran both experienced perimenopause around the same age. .so you have to take that into consideration.

I recently had my cortisol levels checked at my doctors request as it's the only hormone they haven't checked. They came back raised for my age which I believe is connected to perimenopause.

Stay strong and maybe go back and speak to another doctor. Make sure they listen and take on board what you're going through. Hopefully they will be able to help x

7

I was tested for many infectious diseases. My ebv results showed antibodies for past infection but not for current. Dr said that most of the population would show similar results. I have a friend who had the exact same experience. Thought she had ebv reactivation but was told the same. Hard to know what to believe. But hard to believe that ebv would cause these specific female symptoms. Mine are directly timed to what part to the cycle I'm in and are fairly consistent each month. How do u know your ebv symptoms?

8

You said it right...Puberty and pregnancy times 10. Sigh. I've had my thyroid checked 3 times and it comes back normal. Hugs!

9

I had thyroid checked 3 times in 18 months. Comes back normal. I had fish checked also but not sure it was tested at correct time of the month sad

10

I'm curious what symptoms you had that I didn't mention. I've had so many, maybe I've had those too wink

11

Hi Lisa  I've had all of this,  and still having all of this.  Everything comes back normal, FSH is unreliable.  We are all at a loss to get to grips with this  but obviously by all the answers, we have all experienced the same.  Wish there was an answer.  I reckon it might be HRT or suffer on...

12

I had symptoms starting at 36, levels were fine (a little low) a year ago, and then boom, full on meno last month.  I just turned 40.  Same symptoms, lots of drs, thought I was crazy, sick, alone.  Still sucks right now, but it is peri, don't doubt it.

 

13

Thank you for replying. It's just so hard to wrap my mind around the idea that hormones can make me feel THIS bad. When you say "full on meno" do u just mean your period didn't show up? I missed one cycle and have had several where I bled very lightly for 3 days. But it remains a yo yo experience so far. I'm always second guessing this experience thinking it must be something more serious...it sure does FEEL that way.

14

Lisa yes hormone fluctuations can make us feel that bad, I thought I was going crazy, and lots of women start early so I definitely think your in peri, I would keep having your FSH levels checked at different times of the month apparently it constantly changes x

15

You have to make sure to do the correct testing for EBV, some doctors don’t do all. Just like for Lyme, you need the proper tests, however, Lyme can mimic ebv and visa versa. 

My symptoms were cyclical as well, and like you I feel better around ovulation. So it makes sense that the drop and rise in hormones is causing the problem. 

I’ve read that women with EBV (the mono I had as a teen was severe, I was hospitalized and I had a bad case of Lyme in the 90s) that is a more severe strain can have a harder time in peri and meno. 

Also, as far as hormone testing, it depended who was reading them. I had an endo who said my hormones were normal. But a hormone doc who said not. In any case, all the symptoms came flooding in when my periods started getting funky. 

I was very ill for about a year. Some of my symptoms included: gastritis, breast and ovarian pain from cysts, jelly legs (anxiety?), breathing problems, pain in back near left shoulder, sore throat/lump in throat,  frozen right shoulder, heart palps, shaking, eye flashes, awful flu like feeling, depression, burning feet, etc..

I was a mess and thought being that sick must meant fatal disease. All the testing looked ok, had my gall bladder removed, didn’t help, it was all so devastating. Think I saw at least 10 specialists if not more. 

When I finally read about EBV/chronic fatigue, people will describe the same symptoms minus the female issues, so that’s why I think peri, which caused the drop in my immune system, let the EBV resurface and cause havoc, so a combination of everything made me feel the way I did/do. A year and a half later I’m still not 100% but knowing what was going on helped as being undiagnosed is awful. Now that I’ve relaxed I think my immune system has gotten stronger and the anxiety has lessened. 

Crazy to think hormones can cause so many issues! 

I’m not the same person I used to be 😞

16

Hi Lisa,

Yes - you can feel that sick.  When I first started perimenopause around 47, I honestly felt as if I was dying.  I clearly remember going to my primary care doctor and crying in his office.  I did every blood test under the sun - including Lyme disease, Lupus, everything.  He said you are "the picture of health".  I turned to him and said it is just not possible to feel this awful and not have something truly wrong with me.  I then started on my own journey of researching hormones, joining menopause sites, and was floored by the thousands of other women who were experiencing the same thing as me.  Unfortunately, I had no friends or relatives that were affected to the degree I was when my hormones started going wonky.  I felt isolated and honestly nuts.  After researching and reading everything (books, articles, sites), I then knew my feeling so terrible was hormone driven.  

It's been almost 5 years and I am a bit better.  I have a better understanding of what it is that makes me feel the way I do.  Don't get me wrong, I still struggle.  The inconsistency baffles me more than anything - for instance, Monday was an awful day - I had insomnia Sunday / Monday, upon waking (after sleeping fitfully) every muscle hurt, I was hot all day, brain fog was terrible, no ambition, depression.  Today I feel as if I could do anything.  I woke and felt "normal" - no major aches or pains,  I feel sharp and aware and no anxiety.  

If anything, know you are not alone.  Hopefully that helps ease your mind and heart just a bit.  

17

The last year I had very light periods, and then 3 months ago they just disappeared.  My yearly hormone levels showed that my estrogen was extremely low and in post-menopausal range.  Everything you have felt, I have too, and still do.  No doctor ever checked my hormones, even the naturopaths.  I had to insist, and even then, like you, they were "in range".  Fatigue, digestion issues, bloating, achy joints, dry skin, dry vagina, no libido, dry brittle hair, mood swings, depression, major anxiety at times.  That is a lot to happen to a healthy person in a short amount of time, so of course we are very concerned and go to dr's to try to find out what is wrong and to get ourselves figured out.  That was over a few years, and then a year ago is when I checked my hormones and I was just given progesterone.  I just found out about my estrogen and menopause a month ago.  Shocking, but explained everything!!

We miss ourselves so much and it is very frustrating, although reassuring that it is menopause related. I am on progesterone and an over the counter estrogen just until I see my new Obgyn in a few weeks.  Those are the only things keeping me afloat right now.   

18

That was a great response, Kim, and helped me too.   I feel like you too, never knowing what I am going to feel like from day to day.  Its hard with a family.  I miss my adventurous, full-of-vitality-self.  I am like a shut-in; I don't feel like seeing any friends, since it has been a struggle for years, I don't have many left.  I try to honor this stage of life, and I really have become ok with being alone during the day (i'm an introvert anyways) and enjoy reading, yoga, nature, walks.  It is just what I am feeling on the inside that is the biggest struggle.  It isn't normal for a body to fall apart after our ovaries are quitting; I'm not giving up.  Balancing my hormones is the next step in my journey.  I finally have the test results to prove what I knew was going on.  Its horrible Dr's wont do anything unless a blood test tells them you are unwell.  Thanks for sharing.  It helps when everyone here is so transparent.  I don't know if it's because most of you are in the UK, or what, but I have no one here I can talk to about this besides my long-suffering, amazing husband.

19

My Fhs is 112.5 today , not sure about the other tests till nest week,

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Thank you so much for sharing. It's comforting to read and to know I'm not alone in this. Yes, some days feel like death. Big hugs to all of you ladies who battle this every day ❤