Driving me crazy been chronically ill for nearly 2 years but starting to add some dots together..

Posted , 6 users are following.

Ok so last year 2016 March I wen to ER as i had the WORST stomach pain everso painful i couldnt eat for a week properly.. they sent me home with some PPIs. 

2 days later i went again same problem.. getting worse. Was given a higher dose.

All scans came back clear all blood work ''clear''. 

Went a few times between March and May to ER as kept having the same problem except id lost 10kg as I couldn't eat properly and could only really eat oats etc food that wasn't irritating to my stomach lining as I was diagnosed with gastritis.

June I was in ER again this time they DID an endoscopy finally! and 100% had gastritis and a lax cardia. 

So was kept on the PPIs for 8 months however never seemed to improve. 

Still having issues. Ignore them for a few month especially this year and just try to get on with life.

This month I have been to the doctors quiet often to do blood work.

Yesterday the results came back. My doctor wants to do a re test as something popped up.

High billirubin total and high billirubin direct.

Made the appointment for this week to have a retest. Went back home and pulled out all my blood tests done in ER etc. 

I saw something. I have had high billirubin for over a year. They ignored this. 

Also I have increasing neutrofilos y linfocitos decreasing over the past year. 

I have massive digestive issues all the time daily.

Such as constipation, pain, gas, food is undigested sometimes in stool, stool is always changing colour and consistency. acid relfux all the time for the past 5 years bad at night as it always seems to come up no matter how high i lay.

Also I have had very bad daily muscle twitching and organ twitching since June which i ignored but am now concurred about. 

SO this is where I stand today. I am having a ultrasound done to scan for gallbladder stones but I find it odd as I had last year 4 scans and they al came up completely normal and great, if i had stones would it not have show even if they were small, especially as i had the same high billirubin etc? 

Also would like to mentioned they diagnosed me with thyroid issues hypothyroidism. My TSH was high 10.5 and T3 T4 low 0.88 last year December. Was prescribed levothyroxine. I made a decision not to take these. As my body was given the wrong tablets PPIs...they made me worse and my body ended up addicted to them I had the worst rebound trying to ween off them. Stay away from these tablets they are BAD.

I was convinced that the reason my thyroid was out of whack was because id lost so much weight. I waited to see if I had an autoimmune disorder with the thyroid and made my decision if i did I would take the tablets IF i did not I WOULDN'T. 

I was negative for autoimmune disorders for the thyroid.

I had a test done last month to see what my thyriod level where. Back to better than normal !!! I am also no longer underweight and made sure to try and get some weight back on. As dipped under 50kg at 5'6 when i couldnt eat last year rightly. now I am 58kg.

So this makes me very wry trusting doctors who are just throwing medication at you without getting to the root of the problem.

I was being treated for an out of whack thyroid and gastritis but those are now better but im not better and still having similar symptoms.

what the hell is up?

Can anyone put any pieces together?? 


0 likes, 5 replies

5 Replies

  • Posted

    Also negative for gluten allergy, lactose allregy (thought i consume it anyway), celiac negative, chrons negative etc
  • Posted

    Hi lucy08946

    I had the same experience with stomach and extreme fatigue..my problem was very low B12 ..168 when it should have been between 500-900...

    Normal levels depend on age. It was over a year before i discovered it by asking for a printout of my blood results..there it was in black and white B12 ..168 "commence treatment'...totally ignored!!...by that time i was very ill...when i confronted the doc she was red faced and embarrassed...i now have 3 monthly B12 injections. When you get past 55 yr B22 doesn't absorb or are a vegan/vegetarian(not eating foods that contain B12) meat, dairy etc., or if you are on some meds such as metformin as i was for type 2 diabetes..the docs should have been aware of this???!!!🤔🙄...i think you should ask to have your B12 checked and Vit D which if low causes gastric problems..To help your gut.. juice a bunch of celery and drink every morning before breakfast to get your natural hydrochloric acid going to replace the unnatural acids that have taken it's place and rid your gut of rogue acids....also change your diet to very bland foods no rich spicey fried or junk foods and no fizzy drinks.....best wishes for a speedy diagnosis....

    • Posted

      YES CELERY! Thumbs up!

      Taste? Thumbs down. ;-) 

      If you two can

      (not fructose gas bubbling up), get a lot, and I mean: a lot, of fruits into your system, every 2 hours, graze on them, frequently,

      your vitamin levels will go up naturally, your glucose level will stabilise, also your thyroid will stabilise.

      Don't forget: the thyroid medication is again not addressing a core issue, it is just a supplement for something not working, but not making thyroid work . 

      Celery stalk freshly pressed (tasts yuck!) on empty stomach (500ml, beware, it is a lot and really bitter medicine) is a great start, but please don't forget to try every different fruit you can get hold of. Dates, blueberries, mangos, go for it, dig in.

      All the best!

  • Posted

    Hi Lucy, 

    I have the same symptoms like you,  it’s hell on Earth.  I know this is an old post.  Let me know whether you get my post.  

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