New to Pernicious Anaemia

[Raven_Cat]

I am at the start of this minefield of Pernicious Anaemia, after reading the struggles of PA stories and this site, I feel fortunate that I have not suffered as many members have. I didn't even know about this disease until I was admitted to hospital with B12 deficiency/anaemia and suggested that it was the cause for my jaundice.(I have been iron deficient on and off since 14, admitted to hospital twice, never knew that there was anaemia without blood loss).

I am not officially diagnosed (just 99% sure by my gastroenterologist, pre-gastroscopy). I have been unwell for over 3 years, got fired from work 2 years ago because once covid subsided and had to go back to the office, I could not tolerate the workload and my health, attendance, concentration and performance all markedly dropped (11+ hour days incl commute). In-between I did some study and this past year, not much at all.

Seven weeks ago I became jaundiced and sought out medical assistance, below is a brief of my recent blood results, normal ranges in ()

Parietal Cell Antibodies - Detected

IF - not detected

B12 And Red Cell Folate Report

B12 (138-652) <61 Undetectable/Low

Folate (Serum) (7.0-46.4) 14.6 Normal

Lactate Dehydrogenase 3,269 (120-250) Off the charts!!!

Reticulocyte Count Report

Retics: (10-100) 52 Normal

Retic% Report

Retic% % (0.1-2.1) 2.8 High

Blood count:

White Cells (4.0-11.0) 3.6 Low

Red Cell Count (3.80-5.80) 1.69 Low

Haemoglobin (115-165) 73 Low

Haematocrit (0.320-0.460) 0.208 Low

MCV fl (80-100) 123 High

MCH pg (27-32) 43 High

RDW % (<15.0) 21.0 High

Platelets (150-400) 140 Low

Neutrophils (2.0-8.0) 1.6 Low

Monocytes (0.2-1.0) 0.1 Low

Liver function:

Total Bilirubin (<20) 77 High

Direct Bilirubin (<9) 7

Indirect Bili 70 High

ALT U/L (10-35) 46 High

AST U/L (10-35) 176 High

Iron Studdies

Iron (10-30) 41 High

T'ferrin (32-48) 25 Low

T. Sat. (13-45) 84 High

Ferritin (30-400) 182 Normal

MMA/ Homocystine levels pending

Neurological:

Symptomatic with parasthesias, rombergs positive

The above are results are out of range, no point in including other bloods, although my cholesterol is a bit high despite a low fat diet, is this related to PA for reasons other than I have no energy to exercise?

I would really appreciate feedback from anyone who has insight into my results or the following:

My liver function tests are concerning (ultrasound suggests my liver is normal)

AST & ALT have been high for over 2 years, is this typical with PA and should decline with B12?

My Bilirubin levels have also been high for over 2 years. I was diagnosed with gallstones 2 years ago- is this connected PA because gallstones are typically made of cholesterol or excess bilirubin, should decline with B12?

My Iron Studies tests are also concerning being high, I am not a big meat eater, is this PA connected?

Lastly, from all the information I have devoured about PA, is there a chance that I could get lucky and not have ongoing depilating issues such as many members of this site have experienced? I would never question the experiences of the members, as I know it is frustrating articulating an issue to explain what you are experiencing, particularly without any medical backup or reason. PA seems like a multi facilitated disease where common clinical results occur, but patient experiences and their severity differ.

I'm just trying to figure this all out and hopeful that I live a full and happy life with minimal impact from PA.

Thank you for reading this lengthy question and especially to those that wish to share their own experiences and knowledge.

[Nackapan]

Welcome to the forum.I csnt comments on your blood results but glad you are bring tested and investigated.

My cholesterol has also risen.

Fatigue ,pain ,migraines.,b12 deficiency as impacted greatly on what im able to do.

Still not back to cycling snd swimming.

Am able to walk further.

It becomes a vicious circle.

Sorry you lost your job.

My daughter lost her chosen carreer of teaching.

I had the difficult scenario of the NHS losing the tender of my job service resulting in me leaving as extra stess . Extra travel and hours required with a very shirt union protection.

So got sick inbetween jobs.

No sick pay and messed up my pension.

All you need in the mix when ill.

The extra stress obviously tipped me over.

Such a slow burning condition

.

In Hindsight was b12 deficient then bug despite seeking medical help wax dismissed 3 times .

Anxiety

Menopause

depression

I knew something was wrong but coukd only think of an iron test to be done.

So like you b12 missed for too long .

Have since pushed for B1e to be on the agenda to add to

'Full bloods '

Hope you get some answers soon and get the correct treatment for you.

[Asselchen]

Yes, cholesterol can rise due to b12 deficiency and there is a higher risk for gallstones.B12 deficiency can also be the cause for non-alcoholic fatty liver. I don't know if that would have an effect on the levels though. My liver was just enlarged.

Usually with sufficient life long treatment you should notice only little effects of PA, if at all.

[DiNL]

Hi there,

I also had high ASAT and ALAt and liver tests showed elevated levels. But after frequent b12 treatment they have all returned to normal. I felt awful when I was diagnosed and couldn’t work. But had intensive treatment and am mostly fine now, lead a normal life and feel good. Sometimes when u read things on Facebook groups etc u end up thinking u are never going to feel like yourself again or well again.

I have to say this forum is really good about giving realistic advice and keeping it more normal.

I was also low in iron. Goes hand in hand with PA (quite often) as we have low stomach acid which is essential in helping to break down and absorb iron. I have to say that I am not medical and I’m only a person with PA. I have had to learn a lot and this is only from my experience. Everyone is different. I take heme iron to boost my levels and can absorb that well. But have to test my blood every 4 months to just check my iron as too much is also too bad.

Wishing u well. I’m sure with regular injections u will recover and feel better.

[DiNL in reply to DiNL]

I see u have high iron levels. This will need more research but sometimes it is because the iron cannot be utilized due to your b12 not being optimal. However, it does happen.

[WiscGuy in reply to DiNL]

"But after frequent b12 treatment they have all returned to normal."

May I ask what you mean by this statement, eg, B12 injections vs tablets, and frequency?

Thank you.

[DiNL in reply to WiscGuy]

Yes I was under a doctor experienced in b12 here in the Netherlands. He put me on daily injections. I was on these for 1.5 years and have now reduced and I’m on 2x a week. Sounds extreme (I know). He said - tablets would not give me the same results as I have antibodies that don’t allow me to absorb well from the stomach. So, I would have to take huge amounts of sublingual to get any effect. He said injections are instant and will act quickly. To be honest - I think I was so so lucky to have found him. The b12 institute here in the Netherlands does not really recommend such intense treatment but it depends on your levels and symptoms. Most people get the advice to start injecting 2x a week but others get the advice to inject every other day. I am pleased with how I was treated by my doctor, as I’m now able to work and function pretty well.

[B12life]

if you had jaundice and they tied it to b12 deficiency thats an incredibly severe level of deficiency, plus you have extremely low b12 level, and low blood counts counts. Did they diagnose you with PA? What are they going to do for treatment?

[Hockey_player]

You need loading doses of B12 now. As long as you keep getting enough B12 in injections, there is a good chance that you will not get any worse than you are now, and hopefully will return to completely normal functioning. The bad symptoms others report are from a B12 shortage, and hopefully, you won't have that problem anymore. Don't let doctors stop your treatment. If they will not inject often enough to keep your symptoms at bay, you may have to self-inject like many of us. My husband gives me my injections and it is so much more convenient than going to the doctor.

[Sleepybunny]

Hi,

Just thought I'd mention PAS (Pernicious Anaemia Society).

PAS are based in Wales, UK but have overseas members.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There is a PAS member support helpline. Overseas members can use an online contact form.

pernicious-anaemia-society....

There is a PAS support group for Australia/New Zealand.

pernicious-anaemia-society....

PAS website has lots of useful leaflets...some of the info may be specific to UK.

pernicious-anaemia-society....

PAS have a page for health professionals.

pernicious-anaemia-society....

I think they welcome health professionals from around the world. They can join PAS as healthcare affiliate members.

Other B12 websites (hopefully you can access these).

B12info.com

Run by a UK campaigner on B12 deficiency issues.

b12info.com/

B12d.org

Has interesting online talks.

b12d.org/event/

The B12 Society

Useful lists of symptoms

theb12society.com/signs-and...

B12 Awareness (US website)

b12awareness.org/

Two B12 books I found useful

"What You Need to Know about Pernicious Anaemia and Vitamin B12 deficiency"

by Martyn Hooper, former chair of PAS.

"Could It Be B12" by Sally Pacholok and J.J Stuart (US authors)

Sally Pacholok is a US campaigner on B12 deficiency issues.

More help for doctors

1) Club B12

club-12.org/

Club B12 is a group of researchers and doctors who are looking into B12.

They have regular zoom meetings and have hosted conferences.

2) Useful articles to pass to doctors

Just One Chance - PAS blog by B. Wolffenbuttel

pernicious-anaemia-society....

Search for "B12 deficiency Wolffenbuttel" to find other useful articles he's written including one for BMJ (British Medical journal) and one for Mayo Clinic in US.

I'm not medically trained.