Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Some words, anything please - crowds/overload, Autonomic ? Thryoid?

Discussion in 'General ME/CFS Discussion' started by Pyr2, Nov 10, 2015.

  1. Pyr2

    Pyr2

    Messages:
    60
    Likes:
    46
    Hi everyone, I have posted here for the past few months. I have reactivated EBV and CMV and likely had LYme in the past according to ID dr. For the past two years I have been having unreal autonomic dysfunction issues - mainly POTS type heartrate issues, head pressures, feelings of adrenaline waking me from sleep. I am actually in the process of being worked up for autonomic issues. I do not have a peripheral neuropathy but they are testing me this week for small fiber.

    The newest is scary to me. All of my senses are bombarded and overloaded. I took my daughter to a birthday party and I almost fainted several times from the noise and stimuli and had head pressure and weird head pains the whole time. Dizzy too, like walking on a bouncy...

    When I sit down to work (Im an attorney) I actually seize up with fear and overload over all the steps I need to do to accomplish something. Is this a self-fulfilling prophecy or is the cognitive limitation happening, I can't tell anymore! I can still plan and execute, and my memory and word recall is good. Its just this overwhelming anxiety and agitation when having to read and concentrate and focus. Anyone else?. I keep worrying that its dementia or brain injury.

    So far the only thing they have found is super low C3 and C4 and I had a thyroglobulin antibody show up on test so maybe something is attacking my thyroid and making me panicky? My TSH is low 0.55 but the labs minimum is 0.40, so technically Im still normal.

    I just started an antipsychotic (Zyprexa) and Prozac. I still feel super anxious. I feel like my brain is inflamed or something is wrong up there. I never feel right. Even the drugs are not helping. I feel like something snapped.
     
  2. ahmo

    ahmo Senior Member

    Messages:
    4,340
    Likes:
    6,526
    Northcoast NSW, Australia
    My neurological symptoms were essentially resolved once I had adequate B12. Lab tests don't really indicate how much you've got in your system. Have a look at this vid, see if anything sounds like you. good luck.

    Diagnosing and Treating Vitamin B12 Deficiency‬


    http://www.b12deficiency.info/
    This site was created as a hub to bring all the key websites on vitamin B12 deficiency together in one place.
     
  3. Pyr2

    Pyr2

    Messages:
    60
    Likes:
    46
    Thank you, I will!
     
  4. Sea

    Sea Senior Member

    Messages:
    1,268
    Likes:
    2,650
    NSW Australia
    It could be primarily anxiety, or it could be that the dysfunctional autonomic system is putting out the same messages as when you're anxious and then the anxious feelings follow. It's like what happens when you're given an injection of adrenalin. Treatment that targets what is happening physically usually resolves the anxiety if that is what is behind it.
     
  5. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    909
    You've just started a antipsychotic and prozac. Do you actually NEED these drugs when you have high thyroid antibodies?
    Read about hashimotos mimicking mental illness. Panic and anxiety is very common. Hallmark of hahsimotos.
    Also these drugs could be CAUSING your symptoms.
    Read Thyroid Mum and Stop the Thyroid Madness.
    I would seriously consider why you are taking these drugs.
    Why the antipsychotic? Doctor throw everyone on drugs these days and you have high thyroid antibodies so why isn't THAT investigated more.
    I was diagnosed on the bipolar spectrum due to hashi swings. Took lots of nasty drugs which made me worse and were COMPLETELY wrong as I do not have bipolar. Been gluten free for three months and swings much more gentle now. Hope to eliminate antibodies in next three-five months.
     
    helen1 likes this.
  6. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    909
    Even the drugs are not helping.....

    In my experience they make things MUCH MUCH worse.
     
  7. Pyr2

    Pyr2

    Messages:
    60
    Likes:
    46
    So here is where western medicine and homeopaths diverge. Western medicine telling me Oh 10% of normal people have that antibody - they tell me this despite the fact that I had this test a few years back and it was NORMAL then. So clearly its not normal for me now!

    I also was told JUST that antibody in itself is not significant since all my others are in range. Does having that antibody alone mean Hashis? Or do you need other abnormal labs. And wouldn't it be graves since my TSH is on the lower and not higher side?

    DD you sound like you know thyroid- help!
     
  8. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    909
    Pyr2,

    Im glad you didn't take offence to my post. I am VERY sensitive when it comes to doctors prescribing drugs due to ignorance.

    A presence of antibodies means that you have hashimotos. It means you have an autoimmune condition. Your TSH can swing from low to high depending on when the bloods are taken. They can swing within a day. Also you can have completely normal TSH, T4 and T3 but be symptomatic. What was your T4 level?

    When you had your antibodies tested two years ago were you symptomatic? What level are they now?

    I went back and forth doctors complaining about swinging between two states. I was quickly labelled bipolar. It was only when I had another blood test (after basically throwing myself to the doctors feet) and my TSH had risen to 14 that they took me seriously. The NHS did not want to do an antibody test but when they did I had antibodies in the 400's. It is no surprise as my whole family have autoimmune conditions but this wasn't something that doctors could be arsed to ask me!

    Your heart problems and anxiety are common in hashimotos. I'm surprised you are not fatigued though as that is the other side of the swing. You could have graves though. Have they not tested you for that?

    My advice to you would be to research, research, research. There is a very interesting article on Thyroid Mum (or is it mom as US?) about hashimotos and mental health diagnosis. So many women out there have symptoms that closely resemble bipolar, depression,anxiety etc but are actually due to high antibodies.

    I do not know the reasons why your doctors have put you on antipsychotics. These are heavy duty drugs which could cause you a lifetime of consequences. Were you mentally ill three years ago? Do you have a family history of mental illness? Are they making you feel better?

    I would encourage you to be retested for antibodies, graves antibodies, T4, T3 and research your family history of autoimmune conditions (RA, Lupus, Crohns, Pernicious anaemia etc).

    In the meantime I would seriously question whether it is the right thing to be taking antipsychotics and antidepressants. Perhaps it is? Perhaps they will help you in the short term? It is definitely not my place to claim otherwise but I will say that if you do not need them then GET OFF THEM as quickly and as safely as you can.

    Try going gluten free, taking selenium, and consider LDN (not whilst on the other drugs) and see if getting your antibodies down will lower your symptoms. You could also consider thyroid medication although stopping the hashi swings and strengthening the immune system would be more sensible. Obviously the majority of doctors (are you UK or US?) haven't got a clue about all this ; they will simply offer you drugs regardless if your problem is autoimmune or not.

    Apparently according to my wonderful (only taken 18 years to find one) GP anyone with high thyroid antibodies will be symptomatic of hypothyroidism within five years. He suggests taking thyroid meds before the sh** hits the fan. Unfortunately I cannot tolerate them so have had to delve a little deeper.

    How long have you been on the antipsychotics? If you were someone I loved I would be doing EVERYTHING I can to get you off these drugs.

    I despair, I really do.

    DD
     
    helen1 likes this.
  9. Pyr2

    Pyr2

    Messages:
    60
    Likes:
    46
    DD. The situation got more complicated today, as I found out that I clinically have autonomic dysfunction. Got my report today. Basically I have POTS and something called paradoxical parasympathetic syndrome (when the sympathetic rises, my para should decrease, but it rises as well). So SOMETHING is causing this mess. I feel horrible.

    I am on the drugs b/c I am so not handling this 2.5 year mess at all. I can't fathom how 30+ doctors later no one can help me or figure it out. Im panicked, nervous, etc. So now with the autonomic dysfunction, that in and of itself is causing me anxiety attacks. Its literally an organic cause of real physical anxiety.

    All of my other thyroid functions are good. Only one raises is Antithryoid. HOwever, interesting, because when this mess started I was high 3-4 TSH range, and now I am 0.55. I guess I should get myself to an endo?
     
  10. digital dog

    digital dog Senior Member

    Messages:
    602
    Likes:
    909
    Im sorry. I don't know much about POTS but many here do.
    30+ doctors is not uncommon.
    I understand organic cause of anxiety. I had chronic anxiety for two years and people would ask what I was anxious about but it wasn't anything happening in my life.
    What was your antibody level?
     
  11. helen1

    helen1 Senior Member

    Messages:
    972
    Likes:
    1,363
    Canada
    @Pyr2
    Organic anxiety yes. I had crippling anxiety years ago and was on horrid psych meds. then found out I was menopausal. I went on hormones and that dreadful anxiety vanished within a week - never to return.

    I know hormone replacement is controversial but my anxiety must have been caused by low hormone levels and HRT saved me, no exaggeration.
     
    Last edited: Nov 17, 2015

See more popular forum discussions.

Share This Page