New blood results after supplmenting - Pernicious Anaemi...

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New blood results after supplmenting

Cazzie91 profile image
11 Replies

After a horrible time with doctors trying to listen to me (see previous posts), the doctor put me on :

Cyanocobalamin 50tabletsmicrogram tablets (twice daily)

Ferrous fumarate 210mg tablets (twice daily)

and also told me to keep up with my vitamin D supplements.

Last week I had a blood test and yesterday went back to the doctors to discuss the results, after a week of dread and anticipating for a fight, the doctor has agreed that I was incorrectly put on anti-depressants and has continued with the ferrous fumarate and the cyancobalamin he has also put me on 4 months of Folic acid 5mg tablets.

I was just wondering is there anything else I should be talking to my doctor about from these blood results?

He tested me for the GPC test which was negative.

I have lost all trust with my doctors so I am just wondering if I am heading in the right direction?

Any help would be greatful.

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Cazzie91
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11 Replies
fbirder profile image
fbirder

It looks as if your B12 is now up at a healthy level and your folate deficiency is being treated. It looks as if the doc is on top of things.

How are you actually feeling? It can take some time for things to get back to normal, but are you feeling any improvement?

Cazzie91 profile image
Cazzie91 in reply tofbirder

Thanks!

I am feeling about 40% better than I did a year ago. I am happy that the doctor I am seeing now is listening to me and stated that he is happy to do whatever as long as I am feeling better.

I went to the hairdressers last week, she stated that if I hadn't told her I was on meds to try and sort everything out she was going to tell me to go to the doctors as my hair is still falling out, but I presume that this will take a while as my body still needs time to process everything, as I have felt rough for over a year now.

I am hoping that the folic acid and more ferrous I will continue to improve.

He has also put the B12 on my repeat prescription and told me that I can order it anytime I feel that I am feeling low again.

I think I really hit home with him on my last appointment in the fact that I am 25, they all think I am depressed and I was on the stupid anti-depressants that were having horrible side effects. He asked me if I was still taking them and said no to which his reply was good as I didn't need to be on them!!

It surprises me that one doctor can have a different view from another doctor who is not even 10ft away from one another!!!

Sorry for the rant!

Galixie profile image
Galixie

Wow, does anyone else see what I see on the note about the parietal cell antibody test? Apparently that lab thinks that someone with PA would automatically test positive for both parietal cell antibodies and intrinsic factor antibodies and they don't even bother to do the intrinsic factor test if the parietal cell test comes back negative. That's just not right. It is possible for someone to test positive on IF antibodies and negative on GPC antibodies. Why would a lab think otherwise?

Cazzie91 profile image
Cazzie91 in reply toGalixie

I noticed this but I didn't question it with my doctor as I didn't want to annoy him as he the only one listening to me about my symptoms.

Galixie profile image
Galixie in reply toCazzie91

Well it's not too much of a loss anyway. The IF test only catches about half the people who have PA, and if it had come back negative your doctor would probably use that (incorrectly) as proof you don't have it.

It's good that you're responding well to tablets. :)

fbirder profile image
fbirder in reply toGalixie

Perhaps they have read the NICE recommendations, which say...

If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006].

Galixie profile image
Galixie in reply tofbirder

Maybe, but if so they are misreading the statement. 'Unlikely' is not the same as 'not possible' so the fact that they skip the test entirely just seems criminal to me.

Lizreds1 profile image
Lizreds1 in reply tofbirder

Hi, I have had the if test and came back negative, my b12 came back as 766! But unfortunately I had already loaded on b12, do you think I should have the anti parietal test done? My major symptom I have is chronic migraine, which has improved since having b12 injections, I have all the other symptoms of p.a too! And in my family too! Have been ill for 6 years untreated

fbirder profile image
fbirder in reply toLizreds1

If you're getting treatment that seems to be working then I wouldn't worry about getting a definite diagnosis.

Polaris profile image
Polaris

Your B12 was very low to start with Cazzie.

Most people on the forum find sublingual forms of Methylcobalamin, e,g, Jarrows, Solgar....more effective than prescribed 50mcg cyanocobalamin, which my experience showed had little effect, especially if you're experiencing hair loss and any neurological symptoms.

martynhooper.com/2017/03/22...

Cazzie91 profile image
Cazzie91 in reply toPolaris

I am having a blood test again in 2 months time to see my B12 and my folate etc. I am going to pluck up the courage to ask for injections as I know my diet is the problem, I can't eat meat as I just don't like it, so I can replenish my B12 naturally.

So, i want injections but I will continue with the tablets until then

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