Why everyone on Thyroid UK needs to join the Pernicious Anemia (PA) forum and vice-versa (part one)

Why everyone on Thyroid UK needs to join the Pernicious Anemia (PA) forum and vice-versa (part one)

Hello all,

Ten years ago I was still a regular mom to 9 kids married to "Superman", aka my brilliant and successful inventor, writer, musician, radio broadcaster, senior IDF reserve officer (and veteran of 3 wars including Vietnam), military intelligence consultant and charming as-all-get-out husband who never had a sick day in his life .

Then little by little, Superman began to unravel before my eyes. The changes were subtle at first but became more dramatic and frightening with each passing year. Every other day we brought our doctor one baffling medical problem after another: pancreatitis, fatty liver (he didn't drink), weight gain, depression, extreme weakness, muscle pain, panic attacks, sleep apnea....the list just went on and on.

For years we went from worthless doctor to worthless doctor and spent many nights in emergency wards. Yet nobody had a clue what turned a perfectly healthy 45-year-old man into Humpty-Dumpty after the fall.

He deteriorated to the point where I had to quit my job and be his full-time caretaker. If you saw the film "Is It B12?" the pediatrician's story in the beginning reminded me very much of my husband's. He was beginning to look like that doctor; only my husband wasn't in a wheelchair - not yet...

To make life more interesting, three summers ago our 16 year old son began having bouts of paranoia against me and my husband and behaving very out of character. Within two weeks he got weirder and weirder with bizarre memory lapses in mid-sentence, tremor and dementia-like confusion until one day he just collapsed in a "frozen" ball on the living-room floor and stayed that way for 24 hours. We freaked out and called an ambulance. The shrinks at the hospital didn't bat an eyelash and shipped our poor boy straight out to "Shutter Island" where he spent 9 horrific months drugged up to the max and acting like a zombie. When he finally came home to us after that hell-hole, there was no trace of the beautiful boy we had before.

The "wizards" who run that place decided he had "schizo affective disorder", which is just a nice way of saying your kid is terminally cuckoo. I never heard of that before - all I knew about schizophrenia was the guy in "A Beautiful Mind" who aside from seeing Nazis in the closet, seemed to have his act together a lot more than my wreck of a kid with Alzheimer's and Parkinsons together! Meanwhile the shrinks kept on with their mantra that the skeleton next to me looked "just fine" to them!

I didn't buy their bogus explanations and reassurances. I just wanted my kid back . But where did he go? And how did he disappear so quickly?

Something told me if my boy could change that fast, it means he wasn't that "broken" to start with. I was determined to find someone who would fix him.

No doctor or specialist was going to help me. Not unless I paved the way to the diagnosis for them . I could either make peace with the status quo , which meant deluding myself that the next yo-yo in a white coat who spouts trash knows something I don't, or simply bury my head in the sand and let them carry on playing Russian Roulette with my family's health .

I decided instead to create a new title for myself - I'd be a freakin' "Patient Advocate" . I'll spend every waking moment researching, writing, cruising patient and doctor forums, contacting specialists and figuring out the best way to gain cooperation from my GP.

I wouldn't let up until they're both healthy again.

13 Replies

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  • Welcome to the forum, Najii75.

    I hope you found answers for your son and husband. I'm looking forward to part two.

  • Hi najii75, I'm looking forward to the answer too.

  • ...looking out for Part 2. I think many of us are on both forums - as many people with thyroid problems have LOW B12 and PA.

    Hope you are OK coping with so many challenges....

  • Thank you, Marz

    I'm sure most seasoned thyroid "warriors" like yourself joined the PA forum long ago, but I see from the questions posted by newbies in both places that having a thyroid or PA problem means it's their "only" problem. That's just not the case at all. Those are the ones I want to reach.

  • healthunlocked.com/thyroidu...

    Me too - I completely agree with you. I have tried to mention Thyroid on other Forums but have sometimes been met with a little opposition. I do NOT blame the people as they have been told they are NORMAL by their Docs having only had the TSH tested.

    I have been fortunate to have found my health - comparatively speaking :-) - but I do still hang out here for two reasons - to learn when new information crops up - and to try and keep banging the drum :-)

    Keep on reaching out.....

  • I assume that "banging the drum" means to keep posting more useful, easy to understand information ? Then keep up the good work!

    Knowledge is more than "power". It's a shield of TEFLON. The more knowledge a patient has under his or her belt, the less likely they'll fall apart under pressure.

    The white coats can throw as much cow poo or garbage at us as they want - if we're wearing Teflon, it just sliiiiiides right off!

    It's the ultimate "secret weapon" against intimidation and victimization at the hands of ignorant or obstinate health providers who couldn't give a hoot in Hades that thousands of patients die each year from their wrong diagnosis or NO diagnosis.

    We don't have to be helpless victims any longer.

  • :-)

  • Yes - Martyn Hooper (president of the PA society) said as much at the recent Thyroid conference -

    eliminate symptoms of low B12/PA and Thyroid may improve, many symptoms are so similar.

    I look forward to Part 2, but I have my suspicions as to the culprit ....

    "vitamins" aka "vital minerals & deficiency" should be renamed, its just not a strong enough term for doctors to take notice of....

    J :D

  • I agree with you on that one.

    The minute someone mentions "vitamins", the eyes start to roll. Semantics are so important. Even a respectable word like "nutrition" sounds like "hooglah booglah" to most psychiatrists. But they have no right to complain when you consider the enormous damage they've caused to millions of people with their made-up jibberish "schizophrenia". It even SOUNDS frightful!

    In New Zealand and Australia there was a lot of pressure a few years ago to replace that horrible word with something more human, without the negative connotations.

    Likewise, maybe if someone came up with a sexier name for "vitamins and minerals" people might view them differently?

  • "essential nutrients"? nah not sexy enough.... hooglah

    "Alternative drug therapy".. nope don't mention drugs when actual hormones... alternative was soooooooo '80s

    "Original drug remedy" - nah.. too hippy...

    "What you body actually needs to repair itself" - nah too vague...

    "If you needed drugs you'd have a hole in the top of your head with a big fluorescent arrow saying "Docs make money here" donate or die....

    I quite like that one.... J :D

  • LOL Me too! ;)

  • Good luck with your research Najji. Do try some wholeistic therapists who will see your son and husband as whole people with completely integrated systems of mind, body and spirit. I use my allopaths for tests but even they are unreliable.

  • I too am looking forward to the next part of your story. Many of us here have both PA and thyroid problems, and quite a few have other auto-immune and neurological conditions as well.

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