Hi there - early in my journey with this (discovered in Nov 2017 I am low b12/low ferritin). (I am in Canada) My GP has not been interested in discussing my symptoms and keeps asking if I am depressed (will not talk to me about PA). Started bi-weekly injections and lots of supplements/co-factors with a private clinic last Dec now self-injecting every other day. Some symptoms improving, others remain. My GP has booked me in to see a number of specialists without talking to me about this. I have no clue what they do or what they will be testing. One that is coming up on April 20 is with an Internist. Has anyone seen one and what do they do? Should I stop my injections now - my neuropathy and muscle weakness is decreasing but will that give them an accurate picture of what is going on with me? Would appreciate any advice. Thanks!
Internal Medicine Specialist appt - Pernicious Anaemi...
Pernicious Anaemia Society
this is an article on 'internists' though it didn't leave me any wiser really as to what they actually do/specialise in
given that it's usually recommended to stop B12 supplementation for at least 3 months before most tests I would say that there probably isn't any point in stopping now for an appointment on 20th.
My understanding is that an internist is a doctor whose specialty is to take a whole-system viewpoint. They tend to work with adults who have some complex inter-related health issues.
My mother thinks they are the bees knees and convinced me to go see one once. That appointment didn't go well, so I can't give any useful opinion about whether internists are well suited for treating PA.
Hello Llawry, I’m also Canadian (Toronto-based) and have encountered similar issues with my family doc. My visit to the internist was one of my best appointments to date. It was an incredibly thorough assessment and he took things very seriously - said the severity of my B12 deficiency had been downplayed. He sent me for 2 scopes (upper/lower) to assess the exact cause and I’m awaiting a follow-up appointment. He did not test B12 as he said the number is irrelevant now, as only symptoms matter (my B12 number had gone up, with 1 month of 3x/week loading doses and 1x/week maintenance since, diagnosed July 2017). He did test vitamin D (covered by OHIP if he orders it), which proved to be exceptionally low, too, despite supplementing for years. I remain incredibly ill but feel like I have a true ally on my team. He levelled with me and told me the likely prognosis at the end of this first year of treatment, which isn’t good, but I appreciated the realism. And said injections would be needed for life. No question of emotional state or any of the other condescension I’ve experienced. I’m hopeful you have similar success and feel heard like I was. Good luck!
Thank you so much for this hpbcomet. I was not sure I could take another hour of “it’s all in your head” so will now approach the appointment with a positive outlook. I am glad you feel you’re getting answers and I sympathize with you. Better to know even if you don’t like it. I guess now the real work begins. All the best on your journey. I wish you well!
Thank you, Llawry! Also, I forgot to mention that I went in armed with a library of photos and a list of symptoms, along with a list of specific questions/tests I’d wondered about, all on my phone. The photographic symptom library, in particular, helped. My anemia is very visible as are some of the other things like broken blood vessels on my legs, etc, but not always present. I also had all of my labs and other specialists’ reports with me. Hope that helps. Fingers crossed for you!
Not sure where in Canada you are from but I'm from Windsor, Ontario and my Internal Medicine Doctor is the only one that would listen to me. Out of all of the docs out there, this is the one that will hopefully help you! No doc to this day believes any of my symptoms are related to b12 even though they ran through the gamut of tests while admitted to the hospital for 5 days. Dr. Saad basically said if b12 makes you feel better than don't stop taking it. I mentioned to him that it is truly sad that our "normal" for b12 in this country is so low compared some other parts of the world. I also told him I wanted to be treated aggressively as here it is usually one injection weekly for a month and then one monthly. I hope you end up with a great physician like I did. One with an open mind and is willing to listen. Unfortunately, I was started on injections before anyone thought to find out why my level was so low. I can't go more than a couple of days without an injection so staying off for weeks at a time isn't an option for me. We just assume it is because of IBS that I've been dealing with since my teens that miraculously has disappeared since my second month of injections. Good luck to you
Thanks so much for this. Very helpful! I am in Vancouver and have been dismissed by my family doctor for the past 5-6 months as being verging on depression and that my symptoms are due to me getting older - I am 44 - she even suggested maybe my marriage is having problems?! Anyway I look forward to someone who will look at the cluster of symptoms with me as part of a picture and hope to get an informed opinion. Starting to look forward to this and glad I don’t have to wait too long. Currently on alt day self injections as I really crash if I wait too long. Neuropathy and confusion go through the roof. Did you do anything to prepare? My family doctor refused to do the IF test and any other testing (wouldn’t read the info I got from PAS) so like you I think I am stuck in that grey zone of not knowing why. Thanks for your reply. So nice to hear from others
That's funny you say that! When I was admitted to hospital every doctor that saw me wanted to sedate me saying it was anxiety. I have had anxiety pretty much for as long as I can remember but this was not caused by anxiety. Anxiety was just one symptom. It was impossible for them to understand that. The anxiety part did improve somewhat but not enough so I started a low dose of Cipralex. My IM doc wanted to up the dose as I was getting random feelings still here and there but I waited and I honestly believed that I just needed a few more weeks and sure enough it is now under control with lowest dose. They even ordered a psych consult🙄 After talking to me he couldn't understand why he was there and suggested to them b12 testing. While in hospital I had to beg them for 2 days to check my level. It was ridiculous!! It was actually my family doc that discovered it was low.
I didn't do anything to prepare. I had seen this doctor before and it probably helped that I worked with him before as well. I just knew that I was going to inform him on how I still felt and how I wanted to be treated as once a week was not an option. The fact that I told him I felt symptoms return after 2 days was enough for him to tell me to continue injections. My family doc was surprised that he still wanted me to do 3 weekly injections. It has been since January that I was finally started on a consistent schedule and at my last appt my family doctors comment was "maybe you're just one of those people that needs a high b12 level". 😳 I felt like saying "yeah, that's all it is!"
It's frustrating but just do what you need to do. This experience really opened my eyes to our health care system, how closed minded so many physicians are and the fact that we are lucky in this country to be able to easily treat ourselves for b12 deficiency regardless of what most physicians think. I'm also extremely grateful to have found this community. I've searched for a local b12/PAS group and have found nothing
I suggest picking up Sally Pacholoks book if you haven't already. I'm going to suggest it to my doc at my next appt.. Hoping he reads it!
I feel for you two! To add to this, I didn’t do anything to prep for my appointment, apart from the documents and photos. But, it was much too dangerous to decrease frequency of shots with full neuro symptoms and Megaloblastic Anemia. You mention neuro stuff, Llawry, so that needs constant dosing. Knowing that staying on the injections might skew test results was the lesser of two evils for me. Not sure if any of this is applicable to your particular case, but my internist tested CRP, ESR, anti-intrinsic factor antibody/anti-parietal cell antibody (negative) and vitamin D and discovered high inflammatory markers and very low D. Didn’t bother with B12 or folate as I had recent results (high and in range) for those. Same with my recent iron panel. My previous thyroid panel was fine, too. I’ve never had homocysteine tested, and assume that it’s far too late now. All good tests to request, if you haven’t had them. Do you have any other autoimmune diseases? I’m celiac, and the reason for the gastroscopy and colonoscopy was to check for other issues, like h pylori, crohn’s/colitis, etc. as causative factors and to assess damage. Awaiting official word on Pernicious Anemia. The rest were ruled out. Very unpleasant (I was fully awake), but answers are helpful! Wishing you wellness.
Thanks for the support and advice. I don’t have any digestive issues and I don’t have any other AI diseases but my family on my dad’s side is rife with them. Scleroderma, Cancers, fibromyalgia, rheumatoid arthritis, psoriasis - you name it we get it. I have a blood test coming up for ANA, CRP and RF. Never had folate test despite asking multiple times. Haven’t had the other PA tests (IF, parietal, MMA, homocysteine) despite asking for them. Oh well maybe this internist will do some testing or maybe not. The shots are keeping many of my symptoms in control so I guess I can’t get too upset. I find it hard to figure out the cofactors but that could be because I did not have a baseline in the blood tests to work from. Well that and my brain was mush - just when I needed it most!!
Ferritin is low and getting lower despite taking supplements but neither GP or ND are worried
Anyway - this is quite the rocky road. Have just been sorting out my symptoms diary and realize how much time I have lost to this in the past few months.
I hope you are ok hpbcomet and continue to improve. So nice to hear from you.
Hello Llawry, sounds like you have several unanswered questions, too, and tests that are overdue. I’m glad that you don’t have gastro issues, but do hope you find the answers - and especially the treatment regime - that you need.
The lowering ferritin doesn’t sound so good to me. Hope they test folate, too, so you have a clear picture.
I’m sending positive energy for your appointment and beyond. Please let us know how you do!