Worth Going to Hematologist for B12 deficiency? (USA)

[Purplegirl2]

20F

Lately been disappointed by the quality of my care from my neurologist about the b12 deficiency specifically. A year prior when I was first diagnosed with B12 + ferritin deficiency and macrocytic anemia, I was told I could try seeing hematology about it. I didn’t end up doing that for various reasons, but now wondering if I should try that? Would you expect them to be more knowledgable about PA or treating the b12 or could it be a gamble?

Part of it also relates to ease with getting appts in and discussing labs over the phone, both of which is a big challenge at my neurologist. I know the hematologist’s clinic is much better with those things (been there before for other Drs).

I’d still have a neurologist but my b12 management would switch to hematology.

Any insights are appreciated

[Shellbes]

Yes I’ve had the same this lockdown isn’t helping whatsoever x

[Purplegirl2 in reply to Shellbes]

Yes covid lockdowns make everything more challenging, hopefully soon things will get better. I’m sorry you’ve been struggling with it too!

[fbirder]

It depends on the haematologist.

The one I went to see was worse than useless.

He told me that I couldn't have PA because I hadn't had a test for Intrinsic Factor antibodies. Not that I'd had the test and it was negative, but because I just hadn't had the test.

He told me that I must be cured, because I didn't have macrocytosis. I suggested that was as stupid as telling a diabetic they were cured and no longer needed insulin because their blood sugar was low.

He told me that my description of my symptoms was what he might expect from a woman!

When we finished I told him I was going to ignore everything he had told me and explain ti my GP why.

[Purplegirl2 in reply to fbirder]

Oh that sounds terrible! A shame the hematologist was so bad. I hope your GP was a lot better!

[fbirder in reply to Purplegirl2]

He was excellent. Especially after I gave him a Signed copy of Martyn Hooper's book.

[Purplegirl2 in reply to fbirder]

Lovely 😊 Great idea!

[VellBlue]

From what I've seen neurologists are best at understanding this stuff. A haematologist would prob just be concerned about getting rid of the macrocytic anemia, and may not understand that you may need a higher frequency of injections to get rid of the neuro symptoms, if indeed you do. If you don't have neuro symptoms, then of course that is fine.

Generally doctors who are not neurologists haven't been exposed to the reality of how impactful and essential frequent injections of B12 are and are liable to deny it.

If your current neurologist isn't too good, maybe seek a different one.

[Purplegirl2 in reply to VellBlue]

Oh thank you for the explanation. I’ll see if I can figure something out with my neurologist, otherwise I’ll try going to a different neurologist then.

[Nackapan in reply to Purplegirl2]

I saw 3 neurologists. The first one dud test a few reflexes and read my MRI scan. The second said I was addicted to b12 injections and they could di me harm. He thought all down to a fall and said post concussion syndrome

The b12 was fixed. I needed to 'wean' myself off. He thought migraines and wanted me on 59mg amitriptyline to control them.

Third neurologist Not migraines or maybe vestibular migraines or maybe chronic ongoing tension headaches I given myself as tskjngbtoo many pain killers . I proved they were not rebound headaches.

He wanted me on propranolol

I did see him twice as he was reading up on b12 deficiency as had it himself. I could tell! So different . First time ge was due his injection.

He said to keep b12 levels jo.

No quick fix

Telephone consult was fine.

He now off work ill himself.

So as tih can see its which one you hit upon.

Very good for ruling things out like Parkinson's. Ms. Tumours ect.

I've seen many with one of my daughters too.

I would try another.

Or think what yih woujd gain from a haematologist

[Hidden]

I had 2 neurologists who were only interested in plasma levels of B12 and not to take too much via IM. I’m in Scotland and my case (as opposed to me personally) was referred to the district Haematologist. Their advice, due to neurological involvement, was to give me b12 injections every other day until no further improvement. That is exactly the advice which is set out in U.K. medical guidance but which is rarely followed. They never mentioned my low ferritin, presumably as the GP was already dealing with that. So as Fbirder says it seems to relate to the quality of the individual you are referred to less than their specialty. Good luck with it.

[Cherylclaire Forum Support]

I was told by haematologists that B12 was toxic, carcinogenic, highly addictive. I asked three times for evidence but of course there was none. They did a lot of blood tests, they checked my MMA four times, they requested SIBO breath test as MMA was constantly raised, and referred me to Adult Inherited Metabolic Diseases department to have DNA tested before signing me off. In their sign-off report to my GP, they recommended that she halve my B12 injection frequency to one every 2 months with (obviously) no mention of toxicity, cancer or addiction. A frequency that was inadequate to control my symptoms. At this point, I was due back to phased return at work after a long absence - and so started self injecting rather than lose my job.So I have a lot to thank them for, I suppose !

[MoKayD]

Hi, I'm also here in the U.S. Let me share my experience with visiting a hematologist. Right after my GP diagnosed me with pernecious anemia, I went to see a hematologist at Johns Hopkins University Hospital. Johns Hopkins is a world renowned hospital so I was sure I would get the very best help there. During my appointment the hematologist started by questioning me about how much alcohol I drank. I felt like he was accusing me of being an alcoholic. When I told him I have a glass of wine once or twice a month he looked like he didn't believe me. He then accused me of being a vegetarian. When I told him I was a carnivore he seemed disappointed. Finally he told me that I should probably take some vitamin B12 supplements. When I asked about getting B12 shots instead he said that wasn't necessary, B12 supplements work just as well as shots. That visit was a big waste of my time.

[Fiercepapillon]

I think you’ve probably heard enough here to not go to a hematologist. They are definitely docs that love treating to labs so not a good think with b12. The best so far for me is a naturopath. They treat the whole body and focus on b12 symptoms. But you need one that understands PA otherwise they could still push oral supplements instead of injectable.

[scnuke]

In my experience in the USA, it's a real crapshoot. I find that it's not the specialty, but the personality of the physician. I went to a neuro - worthless. My hematologist is great for my Iron, Hgb deficiency, but not too interesting in PA and aggressive B12 treatment. My family doctor is the best. He knows my medical background and the information I give him is vetted and reliable, so he writes Rx's for most anything we agree for me to try. We follow my symptoms and act accordingly. Good luck in your search. It is frustrating, but don't give up. And don't forget you have the knowledge available here to help you take matters into your own hands to get the treatment you need.