Got to take the wins!

[Sparklyjenson]

I’m over the moon and I feel the need to share as it’s you lovely people that have encouraged me not to give up and to fight for my health.

I went to see a gastroenterologist for the first time today (private). I was ready for an argument because every doctor or consultant I’ve ever seen seemed to know very little about PA. I even made a PowerPoint slide to explain what I think is happening to my body (I was dreading getting that out!). I was absolutely prepared to hit another brick wall. However….

The gastro listened to me explain my symptoms and family history and said, “it’s quite obvious what’s going on here, you’ve got PA”. I have got a positive anti GPC test but I don’t even have a positive iFAB test and I told him my haemoglobin is at the bottom of the range but not anaemic and my b12, D, iron and folate are all low but apparently not low enough! He cared more about my symptoms. He has booked me in for an endoscopy and biopsies. I wasn’t even planning to ask for a celiac test but he wants to do that too. He rolled his eyes when I said my gp keeps trying to give me PPIs.

I’m so relieved and I didn’t even have to use my PowerPoint slide! Although I do know this is only the first step and there are many more mountains to climb. It’s weird to be so happy that I need a biopsy and might get a diagnosis of yet another horrid immune problem.

Got to take the wins when you get them!

[Hidden]

well done and I hope it goes well for you,you’ve had a rare find with your Gastro so hold on to him and use him as far as you can,yes it’s awful hoping for another diagnosis but it helps us in the big picture,no one can say it’s in your mind like many of us experience so well done it’s all about how you use the info isn’t it. Best of luck x

[Sparklyjenson in reply to Hidden]

“It’s all about how you use the info”

You are so right…,. I want to know what’s wrong so I can get on with sorting it out as much as possible. Fingers crossed there’s something practical I can do to address the results. If not, well that’s another challenge I’ll need to work out.

[Hidden]

Good news. You're finally getting somewhere. You may find you have autoimmune atrophic gastritis. Most of us do. I also have a hiatus hernia but apparently, so have most of my friends. (pretty common) I'm glad you've refused PPI's that most doctors try to force on us. It's a well-known fact, if you have PA you will most likely have LOW stomach acid, not high. Good luck on your journey from now on.

[Jillymo]

You tend to find when you go private and paying them money they tend to listen.

Well done lets hope your tests go well and you finally get some answers.

[pitney]

Hang on to him😀 and fingers crossed he may educate your GP a little

Best wishes

[cheriton22 in reply to pitney]

comments please,

11-Aug-2022 Serum folate - (SRW) - Normal 5.1 ug/L >4.10ug/L

11-Aug-2022 Serum ferritin - (SRW) - Normal 17 ug/L 10.00 - 291.00ug/L

11-Aug-2022 Serum vitamin B12 - (SRW) - Normal 413 ng/L 160.00 - 820.00ng/L

Normal B12 levels. No need to repeat for up to 2 years

unless clinical changes indicates repeat.

[ozwald28]

Wow thats great news! Where are you based can i come and have an appt too!

[Sparklyjenson in reply to ozwald28]

Hi, he is in the south east of England. Message me if you are near there and I’ll give you his details.

[EllaNore]

That is great news!!! It feels great when you're ready for a fight and the doc actually listens. The exact same thing happened to me with a new gastro doc. She was amazing. Did all the tests I requested, per the suggestions from someone here! It is such a great feeling to be validated after so long. Im so happy for you!! Congratulations!!!! Now you have answers and no one can ever question you again. Even though they will, because it just happened to me again two days ago, you wont feel like it's a personal attack. Instead of leaving feeling attacked and crazy and crying, i left calling my oncologist a narrow-minded idiot in my head and smiled to myself, knowing I had PA and was in control now!! It is a great feeling!! Stick with that doc for sure. You got a keeper!!!🦋🦋🦋

[Sparklyjenson in reply to EllaNore]

You understand completely how I feel EllaNore! I’m so glad to hear you are in a place where uninformed people can’t bring you down. It’s making me sing that song in my head. “I got the, I got the, I got the power!”

[EllaNore in reply to Sparklyjenson]

😂🤣😂🤣😂

[Cherylclaire Forum Support]

Well done ! That is excellent news.

It is a nerve-racking experience, preparing for what may turn out to be a confrontational appointment, given the strange attitude some of the medical profession have taken about b12 deficiency.

Given that many of us have symptoms that include anxiety, short-term memory and cognitive issues, the practical aspect of preparing - gathering and selecting relevant information, highlighting research findings etc - is also fraught with problems.

Beyond being believed, hard to know what to wish for. Now you are getting all the tests you want, again hard to know what to wish for.

I had a gastroscopy that showed "flattened mucosal pattern at D1 and D2 (duodenum)" and "patchy gastric metaplasia" - once Coeliac disease was ruled out, nothing much was made of this.

So I'm going to wish that your need to fight to get help and answers is now over. Takes courage to take a Powerpoint presentation with you: hats off to you, Sparklyjenson !

[Sparklyjenson in reply to Cherylclaire]

I think you hit the nail right on the head. I’m not sure I understood it at the time, but being believed was all I really wanted on Friday. I guess now I’ve got that far I might actually have to process the illness. Having been through a nightmare with my mums diagnosis I know that the fight will never be over.

I don’t know much about metaplasia and mucosal patterns but it sounds pretty important to me. I hope you are scheduled in for regular gastro check ups to keep an eye on the metaplasia. Thank goodness for this forum and experienced, caring people giving guidance.

[Cherylclaire Forum Support in reply to Sparklyjenson]

No- three gastroenterologists all decided that I had nothing more than IBS.

The first two did no more than talk to me for a few minutes in order to make this decision.

The third at least did tests - then said the same.

At the time, disheartening.

[Nackapan]

So glad you were listened to and they were actuslly interested in symptoms.

How it shoukd skwsys be rsther than pre- empting s diagnisis ftom referrsl form or being dismissed .

PPIs anti depressants often not needed snd mask whats actuslly going on.

Well done with the powerpoint presentation. 👌 wow

Hope investigations go okay and treatment starts you on the road to recovery.

[lambuth_eagle]

that’s great!! So glad you had a wonderful appointment where you felt heard and cared for. Makes such a big difference, doesn’t it.

[Sleepybunny]

Hi,

I'm so pleased to hear that you found a specialist who listened and took notice of your symptoms.

PAS might be interested in your story. I think they like to hear about doctors who understand PA.

pernicious-anaemia-society....

[Sparklyjenson in reply to Sleepybunny]

I’d be happy to share sleepybunny so I will let them know.

[Narwhal10]

Excellent news Sparklyjenson,

Thrilled for you, so good to hear there are great doctors out there who know about P.A/B12D.

I have had 2 brilliant private doctors and my current NHS G.P. now just asks me - What do you need ?

Best wishes