Sister carrying a baby that will die ... - Pernicious Anaemi...

Pernicious Anaemia Society

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Sister carrying a baby that will die and mother diagnosed with benign stomach tumor

CarrieD2018 profile image
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Hi everyone,

I have PA- autoimmune gastritis (parental cell antibodies rather than intrinsic factor). I had a canceroid tumor removed from my stomach in January. I also have thyroid antibodies .

My sister also has a b12 deficiency although I don’t know what caused this. She’s hasimotos as well. After three rounds of IVF she finally got pregnant. At the 11 week scan they found fluid in the brain, no bladder, one leg missing, underdeveloped spine and intestines growing outside the body. They baby is going to die but she has decided to carry her. We’re devastated for her. She is on thyroid medication and has her b12 injection every three months. She did all the genetic testing and the results came back clear. Her b12 levels were fine too. So they said it’s just hard luck and they can find no cause. Any one got any insights?

My mum told me last night that she’s been diagnosed with a benign tumor that could turn cancerous so she’s going for an endoscopy every three months. She has never been diagnosed with a b12 deficiency but has always been boarder-line with her thyroid. My Dad also died of small cell lung cancer almost two years ago at age 69.

I am having anxiety at night (only in middle of the night) about all this. This is the first time I have felt this way. I am worried for everyone, even myself. For my Mum does anyone know how likely a benign tumor will turn cancerous? For my sister I am trying to convince her to get some b12 loading shots before the next round or IVF. Good or bad idea? For myself, is once every three years enough for an endoscopy? Also any hints on how to prevent stomach cancer with autoimmune atrophic gastritis with no stomach acid. The consultant said it was a waste of time prescribing antacids as I literally have no stomach acid. I am aged 43.

It’s not all dull and gloom I have a lot to be grateful for and I am trying to focus on this.

Thanks everyone xx

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CarrieD2018
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fbirder profile image
fbirder

The gastritis associated with Pernicious Anaemia is Autoimmune Metaplastic Gastric Atrophy (AMGA).

When normal people eat something, the body produces a hormone called gastrin. This promotes the production of acid by the Parietal Cells. In a classic feedback loop the lowering of pH (increase in acidity) caused by the acid in the stomach tells the body to stop producing gastrin.

But people with AMGA don’t produce acid, so the stomach pH stays high and gastrin production continues. This causes high levels of gastrin in the blood - hypergastrinaemia.

As well stimulating acid production, gastrin also promotes the growth of Parietal Cells. But the immune system kills them off. Other cells grow in the their place This is the ‘metaplastic’ bit of AMGA.

Rarely, some of these new cells can form a tumour called a Neuroendocrine Tumour (NET) or a gastric carcinoid. This is what has happened to me.

As I said, these are rare. My gastroenterologist told me that I was the first one he had seen. They are also fairly harmless. He described them as ‘indolent’. We decided that I should have a gastroscopy every year to keep an eye on them as they can, very rarely, turn nasty. After three years we decided to switch to every two years.

When I first found out I had NETs I did a lot of research. I found that, for somebody of my age, the five-year survival rate for people with gastric NETs was slightly better than for the general public!

I would be quite happy to switch to three-yearly monitoring.

wedgewood profile image
wedgewood

I’m really sorry to hear of your sisters sadness . If your sister would have B-12 loading doses , they can do no harm , even if she doesn’t really need them . I hope that fbirders information has put your mind at rest . My very best wishes to you .

Polaris profile image
Polaris

I am so, so sorry to hear of your sister's devastating experience - and of the other members of your family..........

I can only add that I wish our family (three of us with Hashimoto's and PA/B12d) had known about B12 deficiency and it's connection to infertility/building DNA before one member finally having to resort to IVF - although I hasten to say with a happier outcome.

From listening to many stories on the forum, there seems to be a consensus that injections every three months is not enough and that symptoms should used to measure optimal treatment. So it would definitely be wise for your sister to have extra B12 treatment, especially as pregnancy makes huge demands on B12 stores......

I wish our family had also known about this website:

westonaprice.org/health-top...

based on the teachings of Weston A. Price (1870-1948), a dentist, who travelled all over the world studying the health of populations untouched by western civilization.

He found that many indigenous people understood and valued the importance of pre conceptual nutrition for both parents. Many tribes required a period of special feeding before conception, in which nutrient-dense animal foods were given to young men and women as well as pregnant and lactating women. Weston Price discovered their diets to be particularly rich in minerals and in the fat-soluble activators found only in animal fats. He noted that these people had fine bodies, strong and perfect teeth, emotional stability and freedom from degenerative ills–in sharp contrast to civilized modern societies subsisting on the “displacing foods of modern commerce,”

Warm wishes for better times for all of you Carrie

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