Concerns about B12 jabs are the least of my worries!

[MedicalSceptic]

Before being diagnosed in early 2010 I'd never even heard of Pernicious Anaemia yet alone know the effects of this disease. I was just relieved to get a diagnosis for the symptoms I'd been suffering for a couple of years and looked forward to being on the mend.

I'd had a pain in my side (2008) which couldn't be accounted for, along with bouts of severe dyspepsia and I'd been send to see the gastro dept. They organised a ct scan and a endoscopy. Both were fine so I'd been put on 6mthly follow up with a possible diagnosis of IBS looking likely . Low ferratin levels were detected but no action advised.

The symptoms went away for a short spell but then returned. I was getting desperate as I struggled to go to work and function. Trying to find a solution I asked to go back to see the Endocrine Dept who I'd last visited 30 yrs ago when I'd had a partial thyroidectomy. I didn't realise at this stage that thyroid symptoms mirror many of the PA symptoms.

Luckily the thyroid remnant seemed to be fine - the only issue was that it had enlarged and so was causing some of the swallowing difficulties I'd experienced. I was prescribed low doses of thyroxine to help support the thyroid and hopefully allow it to reduce in size.

I pointed out to the endocrine doc that my nails were flat and ridged. He advised that was because I was anaemic and not due to thryoid and said that gastro need to sort that out. He also mentioned that blood tests he'd taken showed my B12 was low and that I'd likely got PA.

Gastro then tried to find out a cause for the anaemia so a colonoscopy was booked and carried out. This was all fine. They then ordered additional parietal cell blood tests and the diagnosis of PA confirmed. Told to attend GP for jabs and that was it!

I'd started the jabs at my GP surgery doc, along with iron supplements and felt quite positive that I'd be back to 'normal'.

I was now 'retired' as the diagnosis came after I'd made the decision to take early retirement and sort out my health. I was hopeful that I'd be well enough to at least take on some part time work fairly soon.

I started to feel semi ok but still had episodes with the ache in my side and the bouts of dyspepsia which had sent me to the doc's in the first place. It wasn't painful, only uncomfortable, noisy and embarrassing!

Back to gastro for a follow up appt; Another endocsopy was scheduled.

Luckily in the pre-procedure chat, where the doc carrying out the endo asks if there are any other health problems, I remembered to mention that I'd been diagnosed with PA earlier in the year. I hadn't realised the importance of imparting this info and it hadn't been flagged on my file. Doc pointed out that this was very important and that she'd take extra biopsies as there is a type of gastritis that is specific to PA.

This was all carried out successfully and I got the follow up letter and an appointment to attend gastro. From the tone of the letter it was clear that I was going under the IBS umbrella! However on arriving at my appointment the doc enquired whether I'd received a new letter saying I was going to be referred to a specialist team at the hospital because the biopsies showed some abnormal ECL cells. en.wikipedia.org/wiki/Enter...

I was then passed to a specialist Neuroendocrine Tumour team (only a couple of hospitals in the country deal with this type of disease) for the type of carcinoid know as NETS.

Another endoscopy was booked; this will now be the monitoring process on a yearly basis.

Whilst dealing with the brain fog my simplistic understanding of this disease is that it's a Type 1 Gastric Carcinoid resulting from atrophic gastritis caused by the PA..

"Type I gastric carcinoid tumors, which account for 75% of gastric carcinoids, are typically smaller than 1 cm and usually are benign. There can be multiple tumors scattered throughout the body of the stomach. They typically develop in patients with pernicious anemia or chronic atrophic gastritis, conditions in which the stomach stops producing acid. The lack of acid causes the cells in the stomach that produce the hormone gastrin to secrete large amounts of gastrin into the blood. (Gastrin is a hormone normally produced by the body to stimulate stomach acid. Acid in the stomach shuts off the production of gastrin. In pernicious anemia or chronic atrophic gastritis, the lack of acid results in the production of increasing amounts of gastrin.) Gastrin, in addition to stimulating acid, also stimulates the growth of enterochromaffin cells in the stomach into benign carcinoid tumors. Treatment of type I carcinoid tumors include medications such as the somatostatin-type drugs which shut off production of gastrin or surgical removal of the gastrin producing part of the stomach"

medicinenet.com/carcinoid_s...

Now back to the heading of this blog; All the pernicious anaemia support pages and sites that I've looked at over the past 2 years seem to be focused on the B12 injections. Nowhere have I seen an info message for people suffering from PA to be aware of this PA specific gastritis and to see a doctor if they experience any unusual digestive problems.

Whilst I appreciate this carcinoid is a rare condition it is something that often goes undiagnosed. If I hadn't had the discussion with the doc carrying out the endoscopy, if she hadn't taken the necessary biopsies I would likely be under the care of my GP for IBS whilst the real condition remained undetected.

This is rare, and I've no desire to alarm people but I'd like to see more mention of the affect of PA on the stomach besides the inability to process B12 and maybe hear from someone else with this condition.

.

[jayneejay]

Hi Medicalsceptic

Wow, thank you so much for sharing your experience, so well presented and explained, you have certainly educated me, and I hope your feeling alot better, energised and not suffering too much, so nice of you to fully explain even though rare, awareness is the key to all.

[hotcherry]

My son 21 just been diagnosed after years of crazy mental heath teams telling me he had adhd and trying ev anti-phychotic drug! Natahn has always suffered with his stomach sometimes constipated for 12 weeks, was last at GP 3 days ago, no joy for endo ref, nathan sat crying because his bones ache so much, he wakes up screaming with leg spasms juring the night or stomach pain, actually been toi constpation clinic and was on 12 movicol a day, no 1 ever picked up on bloods iv had to educate myself and telll my gp what's was wrong with nathan, still fighting the system

[manyarecalled]

it is well known that people with B12 deficiency are prone to cancer of the stomach. doctors are unaware of PA , let alone the consequences of it.

[dusk33]

Does anyone have a general estimate of how many ppl go on to develop stomach cancer?

[Hidden in reply to dusk33]

Hi dusk33,

See:

patient.co.uk/doctor/pernic...

Gastroscopy

"This is appropriate on diagnosis to confirm gastric atrophy and exclude gastric cancer and polyps. Gastric cancer is two to three times more common in patients with pernicious anaemia than in matched controls."

"Associated diseases[2]

People with pernicious anaemia are at increased risk of developing gastric cancer, and there is an association with other autoimmune diseases (including primary myxoedema, thyrotoxicosis, Hashimoto's disease, Addison's disease, and vitiligo)."

Kind regards,

Marre.

[Magdabfreitas]

This is a really good post, I have Atrophic Gastritis and Pernicious Anemia and went to all the same problem to diagnose. I really think we should be learning more about this disease. Now I have to take B12 injections once a month and endoscopy once a year, so far so good.

One thing you have not mentioned, did you got tested for Lupus? Lupus is a autoimune disorder and Atrophic Gastritis also. I did it and it's a big chance I have Lupus.

Thanks for youe post, really well done.