I need answers feel like slowly dieing

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I am looking to see if others have my extensive history of not feeling good and with premedo its worse!! Ill give a quick run down of my history and who I am, Im 44 years old 2 kids 16&12. when i was around 12 I was diagnosed with hypothyroidism it had shut down, and from that moment have been on various levels of levythroxine. Around the same time I was diagnosed with lactose intolerance also. It doesnt stop there, I have always felt "off" little uneasy when stressed or new things in my life and stomach sickness a lot. In my early 20s started taking zoloft ( sertraline) for anxiety. Still on it to this day, only times I quit was when I was pregnant. I hated being pregnant felt off and just awful the whole time with both kids. Fast forward to when I was 33 had my tubes clamped (because i was never able to take birth control, side effects where worse than not taking any)

My periods started being off, my stomach up set got worse, headacks, anxiety just started falling apart. Over the years menstrual cycles came and went when ever or just kept on. In 2014 it was bad enough I had a specialist burn inside of my uterus to prevent bleeding it should of lasted up to 5 years but within 2 months I had bleeding again. Dr. okayed my for partial hysterectomy. After that I still continued to feel off, but I could deal. Then in 2018 I started to have "thinning" of my labia. Dr. visit after visit no answers it was awful! Pain and burn even tearing and cracking. I found an ob in 2019 that prescribed cream which helped but still had flare ups. Shortly after I was also diagnosed with Celiac's. I started feeling better and issues I was having with guts, and vagina seemed to get better. But that was short lived.... I became feel off, panicky, heart racing, dizzy, anxiety, you name it. Drs yes a few because I wasnt feeling like anyone was listening to me. Dr after dr blood tests play with levels of my thyroid meds but no help even made worse at some points. Finally a dr ran hormones test and said you are premedo. I was excited for a second I finally was getting answers! Well that was short lived... I continued to feel "flu" like or I'm dieing a slow death and no one will hear me. I seen ob who prescribed premairin 1s week I felt AMAZING the best I felt my entire 44 years!!! Once again that was short lived, the 2nd week I thought I had stomach blockage the pain. Also dizzy felt faint couldnt drive was afraid to be alone, didnt know what was going to happen! I missed a full month of work didnt leave my home for 3 weeks other than to go to ER or Dr. just to have them tell me blood work looks ok except for my tsh went from 3.75 to 16.50. I quit taking Premairin and slowly started feeling not so dead. I just need to know im not alone, i cant be the only 1 with these issues. Any help or any anything is welcome I just want to feel great and have my life back!!

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7 Replies

  • Edited

    Hi! Welcome!!

    I don't have hypothyroid history, just wanted to say I hope some of these lovely ladies here can pop in to give you some good advice.

    I am so sorry you were feeling so awful, and I hope you get some more relief.

  • Edited

    You're not alone!! Hang on to your hat, I'll try to keep this as short as possible.. which means grab a drink and some popcorn HAHA!

    I'll be 53 soon but my story starts at birth literally.

    I was born with a genetic heart condition, very common though, mitral valve prolapse, every single person on my dad's side has this and other heart issues. Growing up it never gave me problems but when I was 18 and pregnant with my first child and it became very symptomatic and I'd pass out for no good reason so I had to wear a heart monitor for months, compound that with a weak cervix, I bled the whole 9 months like a period, needless to say I was on strict bed rest. Fast forward to 21 and pregnant with my second child, perfect pregnancy, never sick, ate everything in sight and gained 100 lbs much to the dismay of my heart doc and ob/gyn. Came time for delivery and my heart doc was IN the delivery room and bc I had gained so much weight it put so much stress on my heart I wasn't allowed to push until his head was rimming. I was then advised never to have another child bc my heart wouldn't handle it, even though I lost all the weight I gained and was back down to 102 pounds. Had my tubes tied at 21 yrs old. Fast forward a couple years and I was robbed at gun point, and that started my journey with a panic and anxiety disorder, countless visits to the ER because I swore I had some deadly disease when the attacks would hit. Hot flashes, dizzy, nausea, quivering stomach, racing heart, and violent shaking, I was finally admitted in the hosp bc I lost 30 pounds in one month, I couldn't even hold down a spoonful of water. At that point my liver was eating itself to keep me alive. All my tests were negative, zero, zip, nada, nothing wrong. Off to a psychiatrist I went, who finally diagnosed me with PTSD, anxiety and panic disorder, here come the meds, tried so many I lost count, finally hit on an antidepressant and a nerve pill. Still on them to this day. They help but it's by no means a cure. In 2001 I had a hysto, due to non stop bleeding and 2 fibroid tumors the size of a baseball, but kept my ovaries. Seven years ago I was admitted to the hosp because they thought I was having a heart attack, come to find out it was the blood pressure pill that caused it, it took all my potassium out of my system and darn near killed me and also discovered I have another valve issue, the bicuspid aortic valve leaks and 8% of my heart doesn't get the correct blood flow, and I have tachycardia(irregular heart beat) so add a heart pill. While in the hosp, my white blood cell count was double what it should be, but they figured it had to do with what I had just went through. WRONG, 7 yrs later it still runs high, I was sent to an oncologist, 5 thousand dollars worth of tests couldn't figure it out either, so next step is bone marrow biopsy.. but that has to wait for now. About the same time they found the white blood cell issue, I started with peri meno. Hot flashes to start with the first year, then came the dizzy's, ramped up heart palpitations, fuzzy memory, off balance feelings, vaginal atrophy, yeast infections, random aches and pains, wonky stomach, insomnia, HIGH anxiety, lack of interest in EVERYTHING, thinning hair, weight loss and gain, bladder infections, every day it's something new. I NEVER EVER feel good. My doc put me on a vaginal hormone bc I can't take oral hormones bc of family history of breast cancer and my own issues with fibroid tumors. But it did the job and the vaginal issues have pretty much disappeared. Last Sept I started having issues with my eyes, woke up one morning and my right eye was swollen where you'd get eye bags, it looked like a giant red blister, went to urgent care and they told me it was cellulitis, put me on antibiotics and it seemed to help until I woke up to blood in my eye, went back and they changed meds. Well that part comes and goes but my eye lids now stay swollen, one is bigger than the other and they are some days dry, other days watery, but they constantly hurt and feel heavy. Does the doc care, nope.. I get ignored. Went to the dentist in Nov and during a routine xray they found a "cyst" in my nasopalatine duct, had to have a cone laser scan done to see exactly what it is and if it's something to be worried about, still waiting on those results. Dec 21st, I was watching tv, actually feeling human that day, got up to go to the bathroom and got hit with a hot flash followed instantly by an ice cold clammy sweat, I was so dizzy the room was spinning and I lost my vision, I woke up on the floor, I don't remember going down and no idea how long I was out. My neighbor took me to urgent care and my ekg was so bad and heart rate and blood pressure so high they called an ambulance to take me to the hosp. I had a "cardiac event" but it wasn't a heart attack.. I had to wear a heart monitor for 14 days, just got it off the 6th. So now I wait and have to go for yet another chemical stress test.

    These days I have no idea what is meno symptoms or my health issues. My doc is a moron, I've researched stuff that's going on like with my eyes, and a friend of mine is a nurse, I have all the symptoms of thyroid eye disease, but my doc says my thyroid is fine, but it's on the very low side of normal, no xrays or other thyroid tests to find out. My thinning hair can be meno or thyroid. It can also cause the ramped up heart palps. I have NO idea where I'm at in the menopause hell bc of no period and my doc's refuse to do a hormone test to see where I'm at, they say they're not accurate bc they can change min to min but a baseline would be nice to know. Add this stupid virus into the mix and it's near impossible to get tests or to even see the doc. I'm at my breaking point. I was able to handle things and just push through it but I just can't any more. I'm just done with this whole mess!!! I regret keeping my ovaries and not getting it done and over with all at once when I was young.

    So, you are not alone by any means! Sorry this was so long, I kept it as short as possible LOL

    All I can say is hang in there, take it day to day. I understand how you feel, more than I can say!

    • Edited

      Read your post. Menopause is so scary. I never feel well, like you. Some days, I feel less like I'm dying, but I can't remember what it feels like to feel well. Hope you're doing ok.

    • Edited

      50-year-young (feeling 90) menopausal woman here! Was fired in December because of menopause...well...technically because of poor performance. The menopause link? No focus/not motivated/no energy/stopped engaging with people. I literally would sit and stare into space. Scared to open my mouth and speak for fear of what would come out. Mind you, I had made it to Director-level at a large company so clearly this recent apathy wasn't a life-long personality trait. That said, I reported to a male boss so enough said (ok, some men - perhaps one - are you out there and if so are you hiring? - might have asked if I was experiencing menopause). Menopause hit and all the preceding years of effort completely gone. Can I actually tell a recruiter or new hiring manager by blip in performance was due to hormones? I shared with a female friend I think I know why there are so few female CEO's (leaders): Menopause. Perhaps I should have gotten a hysterectomy. But why? Do men get castrated to keep their wits about them??? No!!! Any-whooo. Point being, we are all here, on this blog, other menopausal women on other blogs, and there are hundreds of thousands like us, because the medical system isn't set up for menopause. Society isn't. Women, before we insisted on working and attaining equivalent careers as men, would by and large sit and suffer through menopause in silence, able to do so without losing a job, since they didn't work and by 50 kids were grown so no risk of raising a delinquent if they checked out. They cooked. They cleaned. They gardened. When the mood struck. And when it didn't? They sat or napped. I hate menopause. Oprah did bioidentical replacement, apparently, although she isn't as present/public as she was before so clearly it isn't helping her too much. I'm trying Estratest HS and Prometrium. Feeling better but now my blood sugar is a royal mess. I'm 5'6 and 155lbs. Not skinny, not obese. Smack in the middle. Now I'm on a statin and metformin. Thank you menopause for adding serious health risks into the mix. Metformin isn't doing anything yet but I don't have GI issues with it to at least there is that. I'll close with this: We need to band together and demand a COVERED BY INSURANCE daily or weekly hormone test kit to navigate menopause. I want to check when I have a hot flash if it's my blood sugar or too little estrogen. I want to check if anxiety is hyperinsulinemia (fake hypo) or too high testosterone. I want to check if depression symptoms are excess progesterone or low estrogen. I want to check if low energy is low DHEA or high cortisol. Don't you? Thank you all for being here ((hug))

  • Edited

    for a start your tsh is way to high, I guess you have Hashimotis? have they upped your thyroid meds?

    im 45 and 2 years ago dec 2018 I went to doct for tiredness, I have hashis been on meds since 2006, all bloods came back normal apart from my b12 being low, was put on 6 injections and all went downhill from there, spent the last two years with anxiety, drunk feeling, neuro symptoms, heart racing , heavy limbs as so on , felt like I was slowly dying, had every test under the sun on nearly every organ in my body, nothing was coming back, doct then messed around with my thyroid meds which did nothing but make me worse, im now only just back on my original dose, periods starting becoming longer cycles, but have now returned to normal, I dont know what happened but am sure I'm in peri, bloods saying not, I only just feel half normal now, I feel I had huge hormonal shift at once and maybe the shots I had excelerated it, dont know, never felt so bad in my whole life, fatigue like never experienced ever, twitching muscles, head pressure, out of breath, just could not function, hope this helps but ive just had to ride it out, hoping and praying I only get better as months go on.

  • Edited

    I get it. I never feel well. Can count on bring really sick, enough to shut down my life, at least once or twice a week. It's really hard on the head.

  • Edited

    ladies THANK YOU from the bottom of my heart you all are so supportive! I know none of us have answers but it helps knowing in this world im not alone!!!

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