Un knowledgable Neurologist aahhh!!

[brenanddave]

Hi, I am writing again to get the advice I have been waiting for months to see a neurologist and just heard today that the neurologist is not going to see me because of my b12 numbers He has decided even with all my neurological and neuropathy symptoms, and that after my doctor did tests and believed from them that I had SACD that he doesn't need to see me and that I only need B12 injections once a month I am so upset!! This has debilitated me for nearly a year now I have had to stop b12 injections for 3 days because of a rash and to eliminate it being b12 and already last night the pain was so bad in my feet and up the back of both legs that I reluctantly had to add an eighth gabapentin to my daily tabs and panadol just to sleep I have aching stiff shins this morning I feel so let down! I am in tears. I can't believe that they are disregarding my symptoms and right to have b12 every second day. My doctor kept saying that the neurologist would tell me how many I should have and we will have all the answers when he heard from him. And now this aahh My doctor has let me down again! Please can I show you my blood test results to see what you all think? 29 mar 2023

B12:150 pmol/L ( 170 - 800 ) L

Folate:17.0 nmol/L ( 5.0 - 45.0 )

Comment:Borderline range B12 110 - 170

29april B12:288 pmol/L ( 170 - 800 )

Folate:21.6 nmol/L ( 5.0 - 45.0 )

Comment:Borderline range B12 110 - 170

Haemoglobin:134 g/L ( 115 - 155 )

RBC:3.97 x10e12/L ( 3.60 - 5.60 )

HCT:0.40 L/L ( 0.35 - 0.46 )

MCV:100 fL ( 80 - 99 ) H

MCH:33.8 pg ( 27.0 - 33.0 ) H

29 nov 2021

RBC:4.32 x10e12/L ( 3.60 - 5.60 )

HCT:0.42 L/L ( 0.35 - 0.46 )

MCV:97 fL ( 80 - 99 )

MCH:33.6 pg ( 27.0 - 33.0 ) H

10 mar 20

B12:180 pmol/L ( 170 - 600 )

Folate:22.0 nmol/L ( 5.0 - 45.0 )

Comment:Borderline range B12 110 - 170

RBC:4.32 x10e12/L ( 3.60 - 5.60 )

HCT:0.42 L/L ( 0.35 - 0.46 )

MCV:97 fL ( 80 - 99 )

MCH:33.6 pg ( 27.0 - 33.0 ) H

1 may 2019

B12:248 pmol/L ( 170 - 600 )

Folate:18.0 nmol/L ( 5.0 - 45.0 )

19 feb 2019

B12:199 pmol/L ( 170 - 600 )

Folate:22.0 nmol/L ( 5.0 - 45.0 )

Comment:Borderline range B12 110 - 170

Comment:Borderline range B12 110 - 170

RBC:3.93 x10e12/L ( 3.60 - 5.60 )

HCT:0.40 L/L ( 0.35 - 0.46 )

MCV:100 fL ( 80 - 99 ) H

MCH:33.6 pg ( 27.0 - 33.0 ) H

And just heard I am pre-diabetic now just to top it off aaaa HbA1c:42 mmol/mol ( < 41 ) H

[brenanddave]

10 mar 2020 b12 180 I have pointed out that over the years due to my def symptoms, I have taken multi b vits and multivitamins and he just dismissed it.

[jade_s in reply to brenanddave]

Even the lab has marked your levels as too low. These results clearly show b12 deficiency, you shouldn't doubt that. Your GP & neurologist clearly both slept through the 30 minute lecture they got on PA/B12D in med school.

[jade_s]

I'm really heartbroken for you 😢 I don't know why docs are so clueless about B12. Your march '23 and prior ones all show deficiency! How can they ignore those values! Even hematological distortion. 🤯

My 2 relatives and myself have each seen a different neurologist and each was worse than the other. I don't know what to tell you, i've been let down by every single doctor i've seen as well. After developing severe neuro issues but before I started SI, I went to my GP begging for help. When I asked for more B12 related tests (IFAB, MMA, homocysteine), she literally shouted at me 'did you go to 7 years of medical school'. I was crying so hard i couldn't drive the 10 minutes back home. Sat crying & screaming in a parking lot for over an hour. I'm sorry you too are going through that, it's awful and it kills your soul.

Have you had an endoscopy recently? You might have more luck with a gastroenterologist, and with PA/B12D it's good idea to periodically get an endoscopy.

And with those results you might have luck with a hematologist too.

With those awful MCV and MCHC levels (and that's from april when b12 was still in range, barely), but very likely due to B12 deficiency, I would be wary of trusting the Hba1c reading. Hba1c relies on counting the amount of glucose accumulated within red blood cells (RBCs), and your RBCs have at various times been slightly distorted.

Not saying you can't be prediabetic, but don't blindly trust it at this point. You can ask for a glucose tolerance test (GTT) - the Hba1c is not a diagnostic test, but the GTT is. You can also get a blood sugar meter and test at home. I like the 'blood sugar 101' website. If you are truly prediabetic, i promise you it's not the end of the world! I've been prediabetic for over 10 years. I take metformin & watch sugar intake especially in the morning, and so far so good, knock on wood.

Do you have a RDW reading?

Have you had a full iron panel at any point?

Sending you strength and happy thoughts for getting through this difficult period ❤️🌺🌼🦋☀️

[brenanddave in reply to jade_s]

Oh Jade!! Once again you are an angel!! Thank you x am having an endoscopy shortly today as it happens. I will ask questions I will put my recent iron tests up now I also have hemochromatosis Serum Iron:9 umol/L ( 10 - 30 ) L

Transferrin:2.1 g/L ( 1.7 - 3.4 )

Transferrin Saturation:0.17 ( 0.15 - 0.50 )

Ferritin:323 ug/L ( 20 - 380 ) And yes!! I just took the dogs for a walk and had a big cry and swearing etc lol But your letter iswhat has calmed and reassured me thankyou

[jade_s in reply to brenanddave]

Oh great! I would make sure the gastro is aware of your low b12 & suspicion of pernicious anemia. There is a specific biopsy protocol they should use to test for autoimmune metaplastic atrophic gastritis (AMAG) - so I would also mention you would like them to check for it. AMAG causes destruction of gastric parietal cells - these stomach cells are responsible for releasing both stomach acid and intrinsic factor., this causing poor nutrient absorption & b12 deficiency. Sound familiar?

Your iron levels are quite low for someone with hemochromatosis. Did you recently give blood?

Ferritin is high however, probably indicating some sort of inflammations - perhaps due to low b12 or the allergies or any number of other things ...

Are thyroid levels ok? Any celiac/gluten issues?

I'm glad I could help xxx we b12 buddies on this forum have to stick together

[brenanddave in reply to brenanddave]

I just found this letter from the Neurologist to my doctor! SPEECHLESS!!!! aaahh I can't believe he had done this not seeing me or taking into consideration my neuropathy!! Status Reason: FSA - Non Patient Contact

: Dear Dr ***** is the advice for such frequent B12 injections from a specialist looking after her pernicious anaemia or is it patient driven? It seems quite excessive. Recent B12 levels show that the patient is well replenished. The patient can go onto B12 injections every 2 months. Kind Regards, Jae Hong, Neurologist.

Priority: P5 - Non contact (only use after 2nd Neurologist review and letter dictated)

[jade_s in reply to brenanddave]

Gut wrenching and idiotic!!... but not surprising 😥😠

You should remove the name of the doctor in the last line of the 2nd paragraph, please. It's against forum guidelines to mention doctor's name.

[PaintLadie in reply to jade_s]

Ahhhh! It can drive a person bananas. I had a note in my file from hematologist saying I was overdosing on expired B12.

[jade_s in reply to PaintLadie]

Scandalous isn't it!?

[brenanddave in reply to jade_s]

Yes it is! I am seeing a new doctor on Wed and taking recent info on b12 def eek! Fingers crossed xx

[brenanddave in reply to PaintLadie]

Oh god!!! As if we need anything else!!! I spent all of yesterday and last Thursday crying. I'm only 4 months in and the doctors are so focused on how often I SI that no one is dealing with all the neuropathy that is crippling me with living a normal life.I'm not actually being treated! x

[Nackapan]

That is outrageous. Ask for a second opinion .

Your symptoms are still evident and you should be seen.

[brenanddave in reply to Nackapan]

I know!!Its so blatant arrogance!! Now what!!!aahhh No neurologist !!

[Jillymo]

I wonder why a neurologist is the Gps first port of call and first referal ? They obviously acknowledge some sort of neurological damage and are aware of the fact patients have to wait a year or more 'as in my case' to be seen. During these lengthy waiting times we suffer even more damage yet we are denied every other day injections !

I think this neurologist like most hasn't a clue about a B12 deficiency and has taken the approach that one size fits all and your adequatly medicated. Maybe you had a lucky escape because this dumb consultant hasn't a ruddy clue and would probably have tried to label you 'as the one I saw did' with FND.

Surely if we have a deficiency they should be refering us to a gastrologist to eliminate the cause ! ! ! I have a case against the neurologist I saw which if honest is a waste of time they all stick up for one another. I have just sent the ombudsman these links more for a bit of sort and to shame them for the pain and aggravation they have caused me.

ombudsman.org.uk/publicatio...

uk.trustpilot.com/review/ww...

It seem's we have nowhere to turn other than to self inject. 🤗 💐

Take a look at all the ombudsman reviews on trust pilot. It's a real eye opener. 👀

[brenanddave in reply to Jillymo]

Thanks Jillymo I had the same thought! He obviously wouldn't have been of any help as he doesn't understand it Thank god I didn't go on waiting lol. No mention of neuropathy!! And! It also shows my doctors ignorance as he must have just been focused on the fact I would dare todecide how many b12 inj I chose to treat myself with. At the risk of loosing my appointment after 3 month waiting already. He would have ralished in telling me that the expert said I was only to have one b12 every eight weeks. I was always going to say that Ialready know how regular I was going to SI myself. Thats my prerogative! Because he cant stopme. Inever asked him to write that letter.I can't believe he felt controling me was more important than getting helpfor me. Anyway! I'm sacking him! Hes out. And thank god the neurologist showed his lack of ability. Idiots!!

[Wwwdot]

Dearest brenanddave

So upsetting for you and for us to read. Just horrible and you are worthy to be treated better.

I cannot add to the comments above other than to say sadly, self help is often the solution. If you can self inject then please consider doing so as clearly you need more B12.

Definitely ask for a second opinion especially as your MCV is high suggesting that blood cells are not being formed properly ( not a medic so layman understanding).

I think you need lots and lots of cuddles and TLC and hugs. Don’t despair because they are inadequate, feel sorry for them as they will reap what they sow. Meanwhile big hugs across the airwaves! Onward and upward.

🤗🤗🤗🤗

[boisland]

brenanddave : With B12 deficiency (B12D) you treat to symptoms NOT B12 serum levels. One of the most common problems in the treatment of a B12D is that people receive insufficient injections to feel well. Often the serum B12 value is used to ascertain the frequency but there is "NO" correlation between the serum B12 value and symptoms experienced by patients. For years you have had elevated MCV/MCH & low B12 values which I am assuming were treated w/ monthly B12 injections. The MCV/MCH values for the most part never decreased and your B12 values never really increased yet your neurological symptoms increased which should have been a clue you were on an insufficient B12 injection schedule. You can search out a hematologist who may understand this, however your GP should follow guidelines..

[brenanddave in reply to boisland]

No! Never on monthly inj. I only ever had a one of injection if it got too low No follow up check on it ever This has gone on for 20 odd years before it got to this. I tried mult b and multi vits but always lacking full energy, and noticible memory brain fog for as many years. I always felt I had something going on.

[boisland in reply to brenanddave]

brenanddave: Elevated MCV/MCH which you had for years alerts doctors to test for B12 deficiency, folate deficiency and or thyroid issues. You have had low B12 for years and w/ the combination of elevated MCV/MCH further testing for B12D should have taken place, especially as your neurological symptoms were growing. I am sorry this happened as it was avoidable. It is very hard to find a doctor that understands this condition or even how to treat. I would seek out a new GP or hematologist asap to discuss remedy, which we know is sufficient B12 injections for us w/ B12D. I highly recommend you join Pernicious Anemia B12 support groups for more details abt condition.

[brenanddave in reply to boisland]

This is the response from a neurologist to my doctor who is not happy about me deciding how many b12 inj I need to treat my condition so thought to take it apon himself to ask an expert!!! that has not seen me. No mention of all my Neuropathy.

Dear Dr ***** is the advice for such frequent B12 injections from a specialist looking after her pernicious anaemia or is it patient driven? It seems quite excessive. Recent B12 levels show that the patient is well replenished. The patient can go onto B12 injections every 2 months. Kind Regards, ***Neurologist.

Priority: P5 - Non contact I'm speachless.!! I have changed doctors. I inject daily which manages a lot of my symptoms and allows me to have a bit of a life.

[boisland in reply to brenanddave]

brenanddave Measuring B12 values during or after treatment, with the aim to measure the effectiveness of treatment w/o considering the patients symptoms is of no value. It is of no value because B12 values says "NOTHING" about the effectiveness of the treatment, therein lies the problem... The patient’s symptoms should be the only guideline for basing treatment. Your neurologist does not understand the nature of this condition, nor did your GP as he could have treated you sooner. It is suggested you do not measure B12 values once on treatment as they should be well over the range.. Again you would benefit from joining Pernicious Anemia B12 support groups. I believe you need to supplement w/ folic acid, however amount depends on how frequent you inject.

[B12life]

with that b12 level of 150, I say you must feel horrible. I went from bed ridden to climbing mountains after 2 years of injecting. the first year was slow and tough, the next year better but still a progression.

find a way to get supplies and start injecting.

lots of tips on this forum.

Don't wait. It takes a long time to heal from b12 deficiency and the symptoms can become permanent.

The docs are ignorate of vitamins and their importance. B12 is responsible for cell generation. our body regenerate cells every 120 days.

unless you have underlying kidney or liver function issues currently, b12 is not toxic at any dose.

As others stated thyroid, iron, vit d are other things to consider.

[brenanddave in reply to B12life]

Thank you B12life! That's so inspiring. Yes! I am SI thank god! And it has really helped already with symptoms. I seemed to need it daily at this point with neuropathy symptoms. I had twice daily why on a cruise so I could cope with all the walking and it really helped. I then got covid and continued with the plan to go back to daily when I recovered. My doctor hated that! And felt the need to get approval from a neurologist about it so he could tell me how many I should be having. As a result, this was his reply!! Blatant medical arrogance. Dear Dr ***** is the advice for such frequent B12 injections from a specialist looking after her pernicious anaemia or is it patient driven? It seems quite excessive. Recent B12 levels show that the patient is well replenished. The patient can go onto B12 injections every 2 months. Kind Regards, Jae Hong, Neurologist.

Priority: P5 - Non contact (only use after 2nd Neurologist review and letter dictated) And no mention of neurological problems anywhere!!!

[Hockey_player]

Yikes! High MCV, High MCH, low B12, neurological symptoms. It sounds like you would be wise to join us taking our shots into our own hands so you can inject B12 often enough to get rid of the neurological symptoms.