Haematologists consultant

[Windyway]

Hi I’ve been trying to get help with my Pernicious anemia diagnosis which my mum & sister had they have both passed away now, but the drs are not helping I only got diagnosed through me asking for further tests after they initially told me my B12 was high 2000 so I wasn’t deficient!! , my dr didn’t even tell me it was pernicious anaemia just that I had autoimmune issues after testing positive for parietal cell antibody , intrinsic factor was ok apparently, it was the gastroenterologist who confirmed I had pernicious anaemia 6 months after the test ! , I’m not taking folate blood test confirmed I was borderline I think it was 4.1 I did take folate for a little while but stopped I think I should be taking it really ! I have been told that folic acid is a synthetic form and the body doesn't absorb this type ? And the methylfolate is the best as it’s the most active form of folate ready for use by your body , folic acid has to undergo a number of steps within the body to be converted to the active form and this type is already in the active methylated form ,

I don’t eat any meat or much fish either but I’m trying to eat a bit of Wild salmon & Wild cod /haddock, I am quite healthy not overweight,

I have been to hospital over the weekend as I feel ill my heart palpitations and fast irregular beats are not going away been happening for a long time even though heart monitors & cardiologist say there’s nothing wrong but they didn’t know about my pernicious anaemia then ! I’ve got a viral infection they said and my inflammation levels are raised but nothing else done , I’m thinking of going to see a Haematologist specialist dr to have everything checked and maybe get some answers before this may turn into something serious! Can anyone recommend a good one that specialises in anemia please ? I live in the Cheshire area uk ,

Any advice would be greatly appreciated windyway 😊

Had B12 6 loading doses in December 2023/ January 2024 just had b12 injection in March I’ve talked dr round to having b12 injections every 2 months going forward

[Wwwdot]

Hi Windyway

Sorry to hear how shabbily you have been treated. But at least you have a firm PA diagnosis.

Given the cardio found nothing and you are still experiencing palpitations it’s likely to be a B12 symptom. Had the cardiologist known about PA it would have made no difference. As I was told when I ended up in A&E for the same reason, their job is to rule out or treat a heart condition. It is not their job to diagnose. Think about that it’s very revealing… It’s not their job to diagnose.

I saw a couple of haematologists, both useless and backward steps. I went to see a B12 consultant in Cambridge and I never looked back. I will send his details privately.

I wish you the very best as you start your health journey. You do need to watch your cofactors though. It’s like the B12 is the flour in cake making, no point having lots of flour but no eggs, sugar or butter!

🤗🤗🤗

[Windyway in reply to Wwwdot]

Hi thank you so much yes can you send me details please I’m feeling so anxious and don’t want this to turn into something serious, can you tell me what the B12 consultant said and what treatment he recommended for you as you said you had heart irregularities? Do you have pernicious anemia ?

Best wishes windyway 😊

[Wwwdot in reply to Windyway]

Hi Windyway

Yes I do have PA - it’s in my bio. He told me to listen to MY body and to manage my PA based on symptoms. The progress in a little over a year has been staggering but I self treat with no help or support from my GP - just support and encouragement from the Cambridge consultant.

🤗🤗🤗

[grumpyold in reply to Wwwdot]

I was wondering if you could possibly send me the details of your Cambridge consultant, please?

I am quite new to this forum, but have been a member of the thyroid group for years.

Even though I fit the criteria for testing under the revised guidelines, my GP is gaslighting me/fobbing me off. Consequently, I am using private testing to try to get to the bottom of why I feel so awful.

My MCV and MCH are nearly always above range, suggesting that I have had macrocytic anaemia for years. I suspect that I have functional B12 deficiency.....I supplement with 2000mg methylcobalamin B12 daily. My active B12 result is always within range, but this is due to the supplementation, I'm thinking? I also take 1000ug L methylfolate..

I already have to bypass my GP and self fund my own T3 and self treat my thyroid condition but with this possible additional concern over lack of B12 at cellular level, I would love to be able to have a knowledgeable consultant in my corner. Knowing what I know now, having learned from this forum etc, I realise have been symptomatic for B12 deficiency for years. Only recently have I been able to join all the seemingly random dots.

I would be really really grateful if you would private message me your Cambridge doctor's details. Thankyou so much.

[MorningMist in reply to Wwwdot]

That certainly has made me think because in my idealised world I like many people do believe that it’s a doctor’s job to diagnose. It’s the ultimate get out isn’t it?

[bookish in reply to MorningMist]

I remember being stunned when a GP told me that they were not surprised that my neuro wasn't really interested in whether I had a functional B12 deficiency, or in what might be causing it - all they needed to know was how to treat it if I had an overt deficiency. But if they don't know how to spot one, how do they treat it?

[MorningMist in reply to bookish]

Do just enough to cover their back, with no empathy for the patient as an individual. 😕 On the one hand they now acknowledge that individually tailored treatments are needed for many diseases and on the other they use rigid interpretations to define deficiency in an essential vitamin.

Doctors don’t give much attention to things that don’t interest them. The process of selection and therefore bypassing certain areas is part of their training.

[wedgewood]

If I were you , I would start self- injecting . You obviously need much more regular injections . It was always advised , with symptoms like yours , to inject every other day until no further improvement occurred. You need to do this , or you might be left with irreversible symptoms. I can really sympathise with the palpitations — they are quite frightening ..I had those as well.

I was also told there was nothing wrong with me , and sent on my way ——- I also had numb feet . I had to go to a private doctor to get the P.A. diagnosis . I could only get an injection every 3 months . Self - injection saved me , but I have been left with burning painful feet , which are now irreversible.

I would definitely take a modest B9 tablet daily( folic acid ) say 400mcg . Or if you’d rather , a Methylfolate .

I will send you some information .

Best wishes .

.

[Orchard33]

Do you have your ferritin numbers from full blood counts? These will tell you a lot about your anaemia status. For some PA people with blood involvement aiming for a count of 100 is desirable. I paid for a ferritin infusion. Six weeks in, palpitations have stopped and I'm recovering from exertion much faster. Serum B12 (I self-inject as needed, for a year EOD) is high.

[prillyb12]

Re folate, if you feel you should be taking it then I'd go ahead and do so. I take 1,000 mcg of methyl folate every 4 days. It has made a big difference in my energy level. I have a B-12 injection about every 3 weeks. But be cautious. At first I was taking the folate every day, then I was developing pressure in my eyes, so I cut back. I also take a B complex every day which includes folate and another important co factor, B6. Good luck!

[Windyway in reply to prillyb12]

Thank you

[Windyway in reply to prillyb12]

Hi could you please tell me what the name & make of the supplements you mentioned are if you don’t mind me asking 😊

[prillyb12 in reply to Windyway]

I take daily one cap of B-Complex Plus from Pure Encapsulations, Jarrow brand Methyl Folate 1000 mcg every 4th day, and the injections I give myself are preservative free (as I react to many chemicals) hydroxocobalamin 1 ml every 2 - 3 weeks. I also take Solgar brand sublingual B-12 (1000 mcg of methylcobalamin) in between shots. About energy, I have blood sugar issues and have to be sure and eat regular meals with ample protein, and balanced carbs. Good luck!

[Windyway in reply to prillyb12]

Thank you for all the info very helpful

[Windyway]

Hi dose anyone know the direct contact number for Dr Klein at the iron clinic in Cambridge?? I’ve tried to ring but it’s a person who then has to ring them to get them to ring me ??? But obviously there must be a direct number to call to make an appointment?? The number I rang was 01223 370922

Any information will be very helpful 😊