New neurologist?

[BethCam]

Looking for advice on getting s new neurologist.

For a history:

47 yo female meat eater

2 years of “mild anemia” bloodwork with nothing specific to note. Recurrent mouth infections and vaginal infections that nothing seemed to help. Mild recurrent tingling in feet/hands. Incresing lack of energy, crankiness and anxiety, forgetfullness.

Late june: tingling and lack of energy became worse and constant.

Early July: blood pressure plummeting danderously

July 11: primary care - labs normal except b12 reading was <50.

July 25: neurologist due Started sublingual b12 1000mcg. Bloodwork showed Homocystine 101 and Methylmalonic Acid 22500.

Mid August: Nerve testing - both legs failed 4 of 7 tests. Started weekly b12 injections.

October: 4 days after 6th injection b12 790. Stopped b12 injections and continue sublingual. New labs one week later - homocystine and methylmalonic are normal but antiparietal cell antibody 67.7 and intrinsic factor blocking antibodies 79.9.

2 weeks later i had to call to find out when to come back in. Days later i heard back that i needed to go to GI for pernicious anemia or other autoimmune disorder and didnt need an appointment with neuro. I am still concerned about the lingering tingling, anxiety and lack of energy.

Currently: gi appointment mid november. I am still experiencing symptoms although a bit milder except infections and blood pressure (lowered my blood pressure meds). Although I understand the GI doc will get to the root of the cause, I am just wondering if i need to be continuing at neuro due to neurologic symptoms. This would probably mean a new dr. The b12 treatment also doesnt seem to match up with what i have read is normal. As well, my reading says the infections and the blood pressure could be related but the dr blew them off as symptoms. Any advice appreciated.

[fbirder]

Who stopped your injections?

Whoever it was, give them a good slapping about the head and insist they are reinstated.

[BethCam in reply to fbirder]

I didn't think they should have stopped. Spread out maybe but not stopped. When I go to gi i will have been 7 weeks since last injection.

[Nackapan in reply to BethCam]

Please get your injections back before more damage to your nerves occur

[Litatamon in reply to BethCam]

BethCam,

So very sorry you are facing so many obstacles. Hope you get better care.

There are so many helpful people here as you can see. The level of knowledge and clarity is an absolute blessing.

Replies here for you have helped me understand testing and choices in treatment. I have posted for help for my case. Apologies for piggybacking on your case but I am overjoyed to have clarity from your original post. Thank you!

Like everyone has said - it is imperative to get your injections reinstated.

All the best to you!

[EllieMayNot]

I agree with fbirder completely!

If you still have neuro symptoms (which you say you do) you should be receiving every other day injections until symptoms stop improving!

[Gambit62 Administrator]

BethCam, from what you describe it sounds as if you are in the US/Canada rather than the UK - there aren't any national protocols in the US and treatment can vary from hospital to hospital.

Basically you need to go back onto injections and from the look of it they need to be every couple of days and this may be the case for life - 790 4 days after an injection is actually very low for 4 days after an injection and implies that you remove excess B12 from your blood very quickly.

The AAFP guidelines in the US do refer to the guidelines used in the UK.

From the test results above you definitely had a B12 deficiency and from the anti-body tests you have PA (assuming that the ranges are the same as on general tests and you are significantly above the noise range quoted on tests).

Not sure why you are being referred to a GI for further tests - you need to be treated properly for the deficiency you have.

Would be useful to know where you are based so if we know of local standards you can refer your doctor to then we can pass them on to you but in the mean time the following may be of use

onlinelibrary.wiley.com/doi...

aafp.org/afp/2017/0915/p384...

ashpublications.org/blood/a...

and you could also try referring your doctor to the area of the PAS website aimed specifically at helping medical professionals improve the diagnosis and treatment of PA

pernicious-anaemia-society....

[Litatamon in reply to Gambit62]

Hi Gambit62,

"...790 4 days after an injection is actually very low for 4 days after an injection and implies that you remove excess B12 from your blood very quickly."

This is great information to hear.

Can you help me find medical documentation/journal surrounding this exact issue and in addition medical documentation for not retesting levels constantly? I need it to help me talk with my GP.

EDIT - my apologies Gambit62. I was so excited to read your reply, I forgot to read the links that you left for BethCam. Possibly you've already posted what I need! Whoopsie.

This is why -----

I have posted before that my 103 level went to 420, after having five shots in a rapid time period. The 420 was from a blood test taken three days after a shot. My GP seemed overjoyed by this number and told me did you see this - look you're absorbing well - I thought "Here we go! Sigh" and said to her I've heard that some can even have serum b12 over a thousand with injections and isn't that just indicative of how much b12 is in my body, not how much has been absorbed? She didn't answer but at least replied in a way that made me secure she knew I would be supplementing for life. That was positive.

She wants to retest again in two months. I know this testing is not needed. And I feel very strongly it is not good to have on record. If she moves her practice or I move and I get a doctor that is ignorant and sees normal or high values clearly on record as you're cured (my doctor is way better but I can see ignorant ones exist), well I am not in the mood to re-argue a ton of issues.

In addition, there is a very strong push in our province to *save millions of dollars* (insert sigh how ironic that statement is!) and switch all injections to pills. Even comes with a study where an emergency room doctor says " many patients talk about injection schedule where there is no indication they even ever needed b12. How wasteful. " My common sense says an ignorant emergency doctor sees already injecting patients in emergency with normal or high b12 serum levels - or sees no anemia - translates that to never needed anything and thinks they are Einstein or God and saviour of our health care. How wasteful we all are!!!!

Sorry for the novel - bitter - by sharing information in the last couple I have just found two people who were told they were low b12 by a GP and nothing else!?!? No this is serious. No let's start injections. Nothing else. No guidance. Both thought nothing and did nothing - besides adding some food -as the word vitamin tends to suggest no big deal. One is my niece.

Thanks in advance for any help finding documents from medical journals.

[Gambit62 Administrator in reply to Litatamon]

Litatamon, I have tried looking for articles with graphs showing retention of B12 over periods of time but haven't actually been able to find them.

The main reference for not basing treatment on symptoms is in the BCSH standards linked 'no need to retest unless it is believed that treatment has not been complied with' (my paraphrase) - combined with treatment being for life in case of absorption problems such as PA.

[Litatamon in reply to Gambit62]

So appreciated Gambit62. Thank you!

Grateful to have your links already posted here.

I will start a new thread when I get closer to her next request for retest. I am thinking I will be asked in December or January prior to shot - a medical assistant does them so I don't see my doctor. Hopefully the medical assistant will be very busy and not see the request in my chart!

Thanks again.

[Hidden in reply to Gambit62]

Hello, following this thread here was was very interested to hear that “790 4 days after an injection” is low. I started injections with my serum B12 at 172, having a lot of neuro problems. I tested negative for intrinsic blocking factor AB but my Parisian cell AB is 58. Three days after my first injection my B12 serum tested at 657, and after a month of a once weekly injection, my levels were at 700. I’m still having neuro symptoms and am trying to make the case for more frequent injections with my GP. I’m still having tests to rule out other possible causes, but I feel like the longer I wait (on monthly now) the more damage can be done. I read through your links above, is there other info that you have about the absorption rates and needing more frequent injections? My GP thinks my current levels are “good”

[Gambit62 Administrator in reply to Hidden]

AVB773, as response above to Litatamon per above wasn't able to locate any graphs showing serum B12 levels for periods longer than 1 day when I looked yesterday. Suggest you follow same course of action re BCSH standards and retesting being unnecessary. Managing a B12 absorption problem using serum B12 (and active B12) is a long way behind the curve now in terms of best practice.

[BethCam]

Thank you everyone for your replies. Gambit62, i am in the southeastern US.

[Ashweb901 in reply to BethCam]

Me too - Nashville - and I had a functional medicine NP write scripts for weekly injections bc that's what I needed. Lee Silsby Pharmacy in ohio sends them by mail. If you cant get a Dr to write scripts you can order from Germany.

[Ashweb901]

You need more injections. The reason the b12 was 700 was bc you had injections but it leaves your system quickly so you need sustained injections over a long period of time. The UK guidelines are every other day b12 injections until the neuro symptoms are gone. Then sustained weekly then monthly. Whatever keeps your symptoms at bay.

[Sleepybunny]

Hi,

A few links that may be of interest

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

[Leils]

Hi Bethcam

Sorry no advice as I haven't been referred to a neurologist at all yet.

Just wanted to say I have a lot of symptoms in common with you and I am on an injection 3 times a week at the moment. It is helping me but very early days as I was only diagnosed in July.

Hope you get the treatment you need

[Hidden]

Hi, BethCam,

if you have neuro symptoms, you have to inject 3 times a week. In 2016 I had a lack of energy, pins and needles, very strong, I could walk very difficult and slowly. On 3 January 2017 in a hospital my B12 was 36 pmol-L or 50 pg-ml. I was diagnosed with peripheral polyneuropathy. Doctors said 1 shot a week, 500 mcg cyanocobalamin. After 2 months I began to self inject, reading this forum and now I had shot number 451. At the middle of 2017 my B12 was more than 2000. Now I am much better, I can walk alone, playing tennis on court, but of course there will be a long way to feel like in 2014.

Wish you all the best.