The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Would endocrinologists help at all?

Discussion in 'Hormones' started by sillysocks84, Oct 2, 2015.

  1. sillysocks84

    sillysocks84 Senior Member

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    I have been wondering if it would be worth it to me to see an endo.. my pots and me symptoms are so much worse during my time of the month!

    -dizziness
    -food allergies
    -exhausted after eating
    -legs feel like they have constant lactic acid
    -HR even higher than normal
    -itchy skin and bumps
    -memory problems

    Anyway, I've been hormone tested like 3 times this year for different issues. My dhea is low. I have polycystic ovaries from insulin resistance. Which insulin resistance can cause mast cell issues , i.e. allergies.

    I saw an allergist today, he'd never heard of dao. He was suspicious when I tried linking OI to allergies. Even though it's pots I thought I'd be listened to easier saying oi. And I don't have an official diagnosis of pots or me because I live in the midwest.

    I've had echoes, ekgs, pulmonary function tests, cts, a rheumatologist tested me for everything. They can't find anything but they do acknowledge my symptoms. However still don't diagnose me or refer me where I want to go. I don't think they know where I should go. So I am going back to the cardiovascular I saw with hopes she will diagnose me.

    Sorry for the rant. I guess I'm also hoping one of you also is in the midwest and have had better success and can point me in a better direction. But also the main question for now is should I see an endo? Would hormone help even help?

    *Edited to say* rheumatologist didn't find anything specific but said, "you definitely have something autoimmune going on"
     
    Last edited: Oct 2, 2015
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  2. jimells

    jimells Senior Member

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    First the GP sent me to a neurologist, who sent me to a rheumatologist, who sent me to an endocrinologist. Guess who the endocrinologist said I should see ... a neurologist. Honest to God I didn't make this up.

    Later I went to a different rheumatologist who ordered a chest Xray, among many other tests. The radiologist claimed I had COPD (even though I have zero breathing problems) so the rheumatologist went with that and sent me on my way.

    Overall, half the doctors I've seen said I'm not sick, and the other half told me they can't help and don't know who can. :bang-head:

    If rheumatologists are seeing autoimmune disease but refuse to follow up - that's pretty disturbing.
     
  3. sillysocks84

    sillysocks84 Senior Member

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    I forgot to say I'd seen a Neuro and had an mri as well lol. All these tests we do! Very irritating for you to go in circles, so sorry! It's like no one wants to use their doctor brain to get into the nitty gritty and help us!

    Lol, nutty rheumy! Sometime ya just gotta laugh.

    Yes, the cardiologist told me she wanted to prescribe anxiety meds. Because my heart was fine, just fast and that was because I Googled too much. I googled because after a while doctors were on my damn nerves! Alas, I am going back to her, she is part of ku medical and supposedly one of the best and I need an official diagnosis of pots to be treated. My husband wants to come with me and put her in her place if she says anxiety again. Ha. Like that'll work on an arrogant doc.

    Well, the rheumatologist did want to see me a third time but I asked her what she would be able to do for me and she acknowledged she wasn't sure so I gave up on rheumatologists.
     
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  4. merylg

    merylg Senior Member

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    I went from Rheumatologist to Endocrinologist. Might solve a little more of the puzzle but ultimately my best move has been to seeing a Lyme literate Integrative GP.
     
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  5. sillysocks84

    sillysocks84 Senior Member

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    @merylg I have been tested for lyme. Can the test be wrong? I hear lyme is tricky.
     
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  6. merylg

    merylg Senior Member

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    Whole issue is complex & then there are co-infections & other stealth infections.
     
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  7. sillysocks84

    sillysocks84 Senior Member

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    Hmm I will read up on it. I have been bitten by ticks as a child.
     
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  8. minkeygirl

    minkeygirl But I Look So Good.

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    Maybe someone who specializes in BHRT.
     
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  9. sillysocks84

    sillysocks84 Senior Member

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    BHRT, an endo wouldn't do this?
     
  10. Valentijn

    Valentijn WE ARE KINA

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    The standard two-tier test has a very high rate of false negatives. So it's known to say a lot of people don't have Lyme when they actually do. The LTT-Elispot from Armin Labs is supposed to have reduced the false negative rate considerably, without increasing the rate of false positives. They've published a paper with their results, and it looks pretty good.

    It can be ordered from the US or UK with blood drawn via specific large/widespread commercial lab services now, though probably needs a doctor to order it.
     
    Last edited: Oct 3, 2015
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  11. jimells

    jimells Senior Member

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    Since 85% of physicians believe we have a psychiatric illness and are basically incapable of admitting they are wrong, they have a pretty good incentive to give us one, haha!

    For a while I was allowed to have the services of a case manager who arranged medical appointments and drove me there. She also attended the exams with me, and the doctors always behaved respectfully.

    My mom, a retired nurse, was with me when that awful rheumatologist said I had COPD. Maybe it would've been worse it she hadn't been there. I suspect that having a family member in the exam room helps, but that one can get better results with an outside professional, although that option is probably seldom available for most folks. If I had a friend who worked as a social worker, I would ask them to accompany me to appointments.
     
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  12. sillysocks84

    sillysocks84 Senior Member

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    @jimells your situation sounds so familiar. I went through 2 pulmonologists because the first said pulmonary hypertension. And I wanted a second opinion as I was scared to death.
     
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  13. minkeygirl

    minkeygirl But I Look So Good.

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    Endos can do hormones but I wouldn't go to one to balance me or for BHRT. They only know what they've learned in medical school imo. I bet they balk at compounded hormones. Again imo.

    I have an NP who does that
     
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  14. sillysocks84

    sillysocks84 Senior Member

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    I wish I lived on the coast.
     

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