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  • My brain needs help any advice what to do next

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    Old 03-26-2017, 11:44 AM   #1
    Goldhan
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    My brain needs help -- menopause?

    I am looking for some answers and guidance as to who to ask for help. I had a full hysterectomy or so I thought October 30 2012 at 35 because I had 2 abnormal paps and endometriosis. Long story short the Dr left partial ovary in after this procedure that resulted in 2 masses forming over my urethra causing obstricted kidney function. The first time the masses appeared was April 2013 and a drainage line was placed in my stomach with a bag attached to drain them for a week. After the week everything went back to normal. 4 months later 2 more masses were found again and the obgyn decided to do a surgery to open the masses and let them drain. He cut an artery which was not realized until after I woke up that resulted in another doctor putting me under to fix the artery. This procedure did not work either so I was referred to an oncology gynecologist. He told me he suspected a partial ovary had been left inside so on October 3 2013 I had a robotic surgery to have it taken out. 8 surgeries later between 2012 and 2013 I recovered and no more masses or pain. 2014 was the best year of my life. I was happy, healthy, and looking forward to a great future.
    January 2015 I thought I had a cold because I was feeling very tired etc. By the end of January something felt like a switch was turned off inside my brain. I was always a very active multitasking woman but something had changed. I walked 5 miles a day and was always doing something but all of a sudden by the end of January it was like I was paralyzed in my body and I did nothing but sit in the rocking chair wrapped in a blanket all day. February came and I decided to see a gynecologist to ask if I needed to start on hormones. Instead she gave me Zoloft and said I would be fine. To save a lot of details I basically got passed to 6 different psychiatrist after psychiatrist for the remaining year telling me I was just depressed even though I told them I had no reason to be depressed I thought I needed hormones. I was tried with probably 12 different medications two at once even over the course of 2015 up until November that year when they took me off everything and that made my brain go into a tailspin. I developed akathesis where my brain was so messed up I walked my house non stop for six weeks I had to be in constant motion only time I didn't walk was a few hours a night when I slept at that time ambien worked for a couple hours. Psychiatrist had to prescribe something I can't remember what so I could sit down finally. After that experience I did not go back on another antidepressant.
    2016 brought more doctors from obgyn to neurologist to rheumatologist to holistic doctors. Everyone had their own opinions. Over the course of 2016 I was finally prescribed estrogen and progestrone but it did nothing for me either. Still not getting any better I went to a homeopathic doctor and had bioidentical hormone pellets put in October 2016. The naturopath Dr tried to say I had heavy metal and mold toxicity and a leaky gut but I know I do not have mold toxicity. She then said it could be lyme disease which fits better but did not want to give me an antibiotic so I even tried rectal ozone treatments desperately wanting any type of solution but that again did not work. She did give me nystatin saying I had a bad candida infection.
    I have been told since this started Jan 2015 to now that I have had everything from depression to menopause to lupus to lyme disease to heavy metal toxicity to mold illness to hypothyroidism to migrane headaches. I have had 2 mris, an eeg and a qeeg which i was told my brain was on fire.
    Recently i found an endocrinologist he told me my heart rate was not right and wanted me to go to the er but I didn't. I have spikes as well with both my blood pressure and my sugar which I never had before. I also have tripled cholesterol and triglycerides since this started. He also told me besides not eating and being vitamin deficient my hormones looked fine other than a high level of testosterone. I still get this strangling feeling even not taking medicine but he said my thyroid was fine.
    I never thought that it was the hysterectomy because the hormones nor the antidepressants have worked and I am not getting the typical menopause symptoms. I have had no hot flashes or night sweats or vaginall dryness. I have seen 18 different specialist, had 2 stays in the hospital, and nothing that I do helps. I have gained an excessive amount of weight about 75 pounds despite not eating enough to keep a bird alive, have days where I get panic arracks, crying spells, and what feels like a telephone vibrating under my scalp. I have a tremor in my hand when I try to pick things up. I no longer can do anything because my mind feels like it is constantly on. I no longer feel anything never feel hungry, thirsty, tired, sleepy, or even love. My stomach always feels full why I don't eat or drink much. My head hurts so bad some days i think it will explode because of the pressure. My short term memory is horrible. I can only sleep an hour or two then I wake up and probably get netween 2 an 4 hours total sleep a day and that is only after taking tylenol, benadryl, and tryptophan pills. I can barely get out of bed anymore and I have no clue what to do next. The more I read about hysterectomy complications I wonder if perhaps all of this that I am experiencing could be from it. However since I went three years with no hormones and then started taking them and still feeling the same with no change.

    I just want the woman I was in 2014 back and to be able to take care of my family. Any suggestions would be greatly appreciated. Sorry for this being so long.

    Last edited by Goldhan; 03-26-2017 at 04:23 PM.

     
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    Old 03-28-2017, 09:29 AM   #2
    STLouisgal
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    Re: My brain needs help any advice what to do next

    How awful! Psych drugs can cause serious side effects, some of which you're experiencing. I belonged to a depression / bi-polar support group after falling into a SEVERE depression after an (unnecessary) hysterectomy. There were members who had been prescribed anti-psychotics without being told they were anti-psychotics and the therapist was appalled because of the serious side effects that can result such as some of those you're experiencing. She specifically mentioned the neurological condition "tardive dyskinesia." And anti-depressants carry the risk of serotonin syndrome which has some similar side effects and can be very serious and life threatening.

    I wonder if these psych med effects are somehow blocking the hormones from getting into your receptors. However, some women need higher levels to be effective. I was on pellets for awhile and my testosterone level got very high yet I had no discernible positive effects and it just made my hair fall out worse than it already does. Did you get a copy of your lab results? What are your estradiol and FSH levels? Since you're menopausal, some doctors would say your labs are "normal" if your estradiol and FSH levels are in the menopausal range. But without ovaries, most women will feel like crap and have difficulty functioning on a day-to-day basis with these low / deficient estrogen levels. But if these psych med side effects continue to plague you, hormones can likely only do so much.

    My hysterectomy was 11 years ago. Even though it threw me into a severe depression and caused a whole other slew of problems (insomnia, severe memory loss, inability to focus and think clearly, extreme irritability, feelings of disconnect / loss of loving feelings, rapid aging, periods of low grade fevers, etc). I never took psych meds because I knew the problem was loss of ovarian hormones. But it took me awhile to find the right form and dose of estrogen. Once I did, almost all my symptoms improved. I went through a number of workups like you because my body was thrown into such a mess by the surgery. I was also prescribed Nystatin because I had diarrhea for a long time after surgery and yeast / candida was found in stool cultures. But my bowels have never returned to normal.

    The "strangling" feeling in your throat could be a side effect of the psych meds. But of course it could be a thyroid problem too since ovary removal puts a lot of stress on the other endocrine glands (e.g., thyroid, adrenals). Did your doctor check your thyroid antibody levels? Did he/she check free T3 and free T4?

    I hope you can get some answers and help!

     
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    Old 03-28-2017, 10:18 AM   #3
    Goldhan
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    Re: My brain needs help any advice what to do next

    After they finally got the walking stopped I never took anymore of the medications. So as of Jan 2016 my body has been clean of all those medicines. When this first started my hair was falling out and I initially lost 20 pound in the first three months. Today my hair seems to be trying perhaps to grow again but not all that much.
    I do have a copy of the blood work and was looking to see what my estradiol should be, it is 30 and for a 38 year old that sounds low but I need to do some research. My FSH was 32. My TSH was 2.4 Free T3 was 3 and Free T4 was 1.3 DHEA was 107. Testosterone was 85. I was told folic acid and vitamin d was too low and given prescriptions for those because I don't eat much but have gained so much no one would believe I don't eat. My stomach just always feels so full. I am currently only taking those vitamins, 200mg of progestrone, and over the counter tylenol/benadryl and tryptophan for a couple hours of sleep. I feel like maybe I should have just fought whatever would have happened rather than have the hysterectomy because I am starting to think it was the culprit behind all this.
    Thank you for reading and your reply. I hope your issues will work out for you as well.

     
    Old 03-28-2017, 12:19 PM   #4
    STLouisgal
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    Re: My brain needs help any advice what to do next

    I would have said "not on your life" to my gyn if he'd been honest and forthcoming and I'd known all I know now!

    Even though you've been off the psych meds for awhile, you could still be suffering from some of the side effects. They can be permanent although hopefully yours aren't.

    An estradiol level of 30 is on the low side and an FSH of 32 is considered menopausal. Are you taking progesterone because you have endometriosis? I've read that when taken with estrogen, it's supposed to help keep endo implants from growing. Did you get an estrogen pellet or are you taking some other form?

    Although a TSH of 2.4 is in-range, I've read that the TSH of healthy people runs in the 1.5 range. Without the lab ranges, I don't have any input on your free T3 and free T4 results. Typically though it seems like people need them to be in the top half or top third of the range to address hypothyroid symptoms. My thyroid labs are not optimal but I've been on several trials of various thyroid meds and I don't feel any differently.

    I hear you on not having an appetite. I had none whatsoever... had to force myself to eat... for at least a couple of years post-op. That has improved probably as a result of getting adequate estrogen. Thankfully, I have remained thin but I do have that hysterectomy belly / apron of fat and altered figure.

     
    Old 03-28-2017, 01:03 PM   #5
    Goldhan
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    Re: My brain needs help any advice what to do next

    I am taking the progesterone because the doctor said it was needed with the pellets she put in in October but to be honest I am not sure how much estrogen and testosterone she put in. I know she said a much higher dose of testosterone than estrogen for some reason. I did have endometriosis but I sure hope it is gone.
    I am not sure about the thyroid either I never had any issues till 2 years ago. I do tend to stay on the cool side my body temperature usually stays between 96 and 97.5. Not sure if that means anything though.

     
    Old 03-28-2017, 02:42 PM   #6
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    Re: My brain needs help any advice what to do next

    Most doctors say you don't need progesterone if you don't have a uterus.

    With an estradiol level of 30, you must have gotten a low dose or have burned through it. When was your insert? A lot of these pellet docs seem to want to give high doses of testosterone and skimp on estrogen which I don't understand. Sure we also lose testosterone when our ovaries are removed but we don't need all that T!

    I also have a low body temp, generally 96.x... always have. Some say this is a symptom of hypothyroidism. Most of my siblings are on thyroid meds as was my dad.

     
    Old 03-28-2017, 08:02 PM   #7
    Goldhan
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    Re: My brain needs help any advice what to do next

    The pellets were put in in October. I guess with my testosterone still being real high they are still effective. I think the progesterone was maybe an attempt to see if it would make a difference since nothing else has worked. I often wonder if the gynecologist would of just given me hormones when I had the hysterectomy like I am being you'd he should of done since I was 35 that I would still be myself and not developed all of these horrible medical problems. I know my mom has told me the whole family has thyroid trouble. Anyway thank you for caring and giving your opinions I just feel like all the doctors I have been to just keep passing me around and none of them really realize how bad all this has changed my life.

     
    Old 03-29-2017, 05:41 AM   #8
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    Re: My brain needs help any advice what to do next

    Since your insert was in October, it's not surprising that your estrogen is low. In my connections with women who use pellets, they don't typically last more than a few months especially the first few inserts. As your estrogen "tank" gets filled, you can usually go longer between inserts. Have you tried various forms of estrogen - gels, patches, tablets - with no luck with any of them? Different forms can work very differently for individual women so it can take a bit of trial and error to find the right delivery route and dose. And if you've been deficient for some time, that makes it harder to get to a decent level. Maybe you can get your doctor to prescribe some form of estrogen if you cannot get an insert of estrogen. It would be good too to know how much of each hormone was inserted. I tracked my doses and lab results so I could ask for the doses I wanted (whether it be pellets or a different form).

     
    Old 04-20-2017, 09:47 AM   #9
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    Re: My brain needs help any advice what to do next

    I came across an article about a case of akathisia and it reminded me of your post. How are you doing?

     
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