Different opinions

Allergies, blood and immune system
1

I had blood tests to check b12 and iron. My doctor rang with the results and said I need 6 loading injections and iron tablets. I made the other 5 appointments as I'd already had one injection last week.

I had an phone appointment today to talk because I had some questions because immediately after the b12 injection my heart was pounding, I felt faint and sick.

Over the weekend all I've done is sleep and I felt like I had pain in my bones?! I was wondering if this was a normal reaction so rang doctor.

The dr I spoke with told me not to have the loading dose because there's nothing wrong with me according to the last blood test.

When I had my first b12 injection I had a blood test immediately after.

Could having the b12 first have confused the results or should I get a 3rd opinion?

2

b12 should be for life , the blood results are going to be high because you are having injections, hows your folate , if its low you should be taking that as well, join the facebook sites for PA there great for info

3

I don't know about folate tbh. I'm going to ask for a print out of blood results so I can see for my self and planning on getting a 3rd opinion

4

Having the injection prior to the blood draw invalidates the blood test.  My physician has explained this several times to me in case he is out of town.  This seems to be a frequent error. He explained that the blood draw for testing should always be done on the due date of your injection prior to getting the injection. 

I have never had an adverse reaction after the injections. I inject 3 ML Sub Q into my lower abdomen every Friday.  I am in the US. I take these oral supplement daily: B6 100 mg, CO Q10 200 mg, 2- Calcium 600mg with Vit D 400 Mg, potassium 595 mg, Tumeric 400mg, probiotics to supplement the absorption issues. 

All ll of this formula has come from working with my doctor for 8 years.  My last appointment on Friday was an hour of reviewing my status because as he describes it, I roller coaster up and down with exhaustion, pain, ringing ears, swollen joints, intestinal, heart, and this year allergies that have caused sinus issues. 

Good of communication and a doctor that listens and is open minded has kept me going. I hope you find that flex ability too.

5

Thank you for ur info dena.

I did think having the injection before the blood test may alter the results.

6

You dont say whether you have B12 deficiency or Pernicious Anaemia.

There is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described  in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.Can you identify yourself in any of the above?

If you have been diagnosed the B12 injections are for life and it is not unusual for things to start to feel worse before they get better and depending on how long you have had low B12 for whatever reason will determine the length of time for repairing the damage done to your nervous system.

As to your faintness, sickness and heart pounding, hopefully these have subsided and won't be repeated after your next injection but I would advise your doctor of these so that he is aware. I'm assuming you are on hydroxocobalamin.

I wish you well nicnic - take care.

7

I was told I had pernicious anemia by one dr and I haven't by another. I will try and find a copy of the book and have a read through.

Thank you for ur input 😁

8

Good Day clivealive,

Yes, I was diagnosed with Intrensic Factor Antibbody with Pernicious Anemia 8 years ago.  I had become symptomatic years befor but was misdiagnosed repeatedly. I ended up losing the use of my left leg to neuropathy, I was bedridden for 18 months sleeping, my hair was falling out in hand fills, my bones were breaking because due to low density and lack of balance, SVT heart problems, high blood pressure, memory loss, COPD induced by asthma, bursitis in joints with swelling, all in the ADT, and misdiagnosed as depressed. I consulted 12 doctors until I found the one that saved me. 

My my memory has repaired some memory, my leg came back after 3 months in a brace, blood pressure is I proved, SVT is. Controlled for most part, Fibromyalgia (I think of it as a dumping spot) is many of the muscle joint pain issues, COPD is being managed with Meds, no depression, and neuropathy is up and down mainly bee sting sensations. I am 58 years old and forced to retire and sell my companies 10 years ago because I couldn't keep up with all of it.  

I am determined to maintain quality in the life I have left. I have taken new hobbies to improve functionality of my body, snorkeling, sewing, computer research, gardening, traveling the world, and chasing two grandsons. Life is worth fighting through the medical systems to keep going. 

Thank  you for asking. I know you have had a long journey also. 

9

Book is on Amazon. It is my bible.  I have had two doctors tell me they don't believe Intrinsic factory antibody is real. In the US, I can just go to a different doctor.  It took 12 doctors and years to find my wonderful physician. 

 Wishing speedy answers for you.  Don't give up the symptoms only get worse and B12 is so simple.  It isn't the only nutrient supplement needed but a necessary beginning. 

 

10

I am not a medically qhualified persoins but any doctor worth his salt should know that to have a serum B12 test taken after an injection is totally skewed and meaningless.

False normal B12 results and the risk of neurological damage  (U.K. N.E.Q.A.S Haematics org uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.” 

You could also quote:

https://patient.info/doctor/pernicious-anaemia-and-b12-deficiency

There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Care Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level. It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels.

For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.

These are the guidelines he needs to follow and the sort of treatment your doctor needs to be giving you if you have P.A.

Sadly the test for intrinsic factor is at best only 50% accurate so go back to the doctor who originally told you to have the loading doses with a list of your symptoms and insist on the treatment continuing per the above guidelines.

Another option would be to join the Pernicious Anaemia Society.  The annual subscription is £20 for a year and they will often intercede on your behalf if you are not getting anywhere with your G.P. 

11

That is so sad that you have been so badly mistreated for your P.A. and I am amazed at your capabilities despite it.  Well done!

I have just succeeded in getting the frequency of my injections increased - a small victory in this great war.

I wish you well for the fvuture.