new hematologist questions to ask

[Purplegirl2]

any specific questions I should ask the new hematologist I am seeing? Any ideas on responses if they mention anything inaccurate or untrue. I’m hoping to get a prescription for more frequent injections.

[jade_s]

If they say anything that seems wrong, "too much b12 is toxic", "serum b12 levels are ok so you don't need injections" etc, ask for a reference eg a journal paper or copy of the medical "for my records" or "because i want to add it to my b12 file for future reference" (or something like that), because that is not what you've read in journal papers. [I hope you've at least seen/read the Many Faces of Cobalamin deficiency by Wolffenbuttel?] .

What may be most convincing though is a symptoms log, if you have one. If not, I would list all the pretreatment symptoms that went away / reduced with injections, and then next to each one how long it takes to reappear/worsen after an injection & before the next one.

List how all your daily activities are impacted. E.g. first days after an injection i study effectively, wake up without pain, etc, but by day X i am too tired/in pain to make it to class / hold a pen / finish homework / make myself dinner / etc.

If they're really not budging, ask for a trial of increased injections of several months (i forgot how often you get them now sorry). They may be more amenable if there's a fixed timeframe.

Explain how you really want to finish your studies and be self sufficient, how you know the injections are really helping you achieve that.

I see you were doing SI at one point - congrats!

And best wishes for the appointment!

[Purplegirl2 in reply to jade_s]

Thank you jade I really appreciate your comment!

[Cherylclaire Forum Support in reply to Purplegirl2]

Exactly as jade_s put it - an excellent reply.

When I went to a haematology consultant, this is what I was told:

B12 is toxic, B12 is carcinogenic, B12 is highly addictive.

It is alarming to hear a medical professional say this, ignore any requests for scientific evidence, then walk away, leaving you for a locum to deal with.

Unexpected and insulting.

Still, she walked away with a 2 page copy of my symptoms list for her records......

perhaps they did't end up in the bin.

[Sleepybunny in reply to jade_s]

Link to article you mentioned.

B12 article from Mayo Clinic in US

A good one to pass on to doctors.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

[MorningMist]

I’d just like to belatedly add that my gp consulted a haematologist about my initial result of 254 and was told bluntly ‘please do refer her to me’. That was the end of any discussion on the matter. 😟

[Purplegirl2]

so I went to my appt and the new hematologist (who was very knowledgable about b12 stuff) said on my recent labs that I didn’t have evidence of deficiency (my MMA and homocysteine was normal) so she said I may not need b12 injections as frequently but said she was willing to do once a week if I want. And about my serum b12 being low she said I might have something wrong with a carrier protein that makes my serum levels always low even when I’m treating the b12 with injections and said not to worry about serum level but to check MMA and homocysteine as evidence of deficiency. Mentioned something about holotranscobalamin. She wasn’t entirely sure that I had PA but I think I do since the first time my b12 levels were checked I definitely had macrocytic anemia along with low serum b12 and high homocysteine and high MMA. Perhaps the deficiency is being treated well enough by my injections so I no longer have evidence of deficiency anymore but I bet if I went off them long enough I could develop it again. Unfortunately being negative for IF antibodies was not helping my case but the hematologist did admit that the test has high specificity but low sensitivity, and that it’s possible I was IF positive in the past and then became IF negative (happens once enough IF cells are destroyed) but we don’t know for sure since I wasn’t tested for IF antibodies until relatively recently. I am positive for parietal cell antibodies (which is very common in people with PA) but it’s not highly specific for PA, but she still advised me to see a GI doctor and fortunately I have an appt to investigate for atrophic autoimmune gastritis. I would say the appt went well and it was good that I’m no longer b12 deficient so my injections are doing good work but somewhat frustrated that my unrelenting fatigue and brain fog and other symptoms may not be related to the PA after all and I don’t have a good idea on what that could be (thyroid tested and was normal, been tested a few times throughout the year).

[jade_s in reply to Purplegirl2]

Hi Purplegirl2 , great to read your update. I suggest you make a new post, this reply seems to have gotten lost in the mix.

I would be hesitant to say PA is not the cause of your fatigue, brain fog, etc. Those can be the last symptoms to disappear. Continued treatment at the right frequency for you can help alleviate these issues.

Remember that blood levels are meaningless once on injections - we must go by symptoms. My B12 is > 2000, MMA and homocysteine all normal, but if I skip more than 1 day of injections, I turn into a bumbling mess with tingling and burning and vision problems, and there are many more like me here. Plus all the guidelines say the same - they should not test B12 levels once on injections because they do not tell the whole story.

That said, other things can cause those issues. As for thyroid, sometimes doctors tell us everything is "normal" but it's not really, so it can be useful to post the actual results so others can comment. Low iron, low vitamin D, low folate, can be causes. There could be other diseases or autoimmune issues, but it's best to sort out the above first, because it's easy to test and treat.

Good to hear you will see a gastro. And good that she will do once a week !

If you make a new post I'm sure others will give some good input.