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Pernicious Anaemia Society

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mnburris profile image
15 Replies

Hello! I'm from the US, hope thats ok.

I had my blood drawn 3 weeks ago and my B12 was at 190. I started daily imjections for 5 days. Now I am on a weekly shot. And I dont think its enough. I'm not due for another shot until Wednesday and Monday I started feeling fuzziness and imbalance again.

I dont know WHY my B12 was low. My D is low as well. What other testing should I request?

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mnburris
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15 Replies
clivealive profile image
clivealiveForum Support

Hi mnburris do you know what your Folate level is as this and B12 helps your iron make red blood cells amongst other functions?

mnburris profile image
mnburris in reply to clivealive

I'll copy and paste all the results I have.

WBC 9.4 X 10^3/uL4.8 - 10.8 X 10^3/uL

RBC 5.17 X 10^6/uL4.20 - 5.40 X 10^6/uL

Hemoglobin 16.0 G/DL12.0 - 16.0 G/DL

Hematocrit 45.9 %37.0 - 47.0 %

MCV 88.8 FL81.0 - 99.0 FL

MCH 30.9 PG27.0 - 31.0 PG

MCHC 34.8 G/DL33.0 - 37.0 G/DL

RDW 13.0 %11.5 - 14.5 %

Platelets 205 X 10^3/uL160 - 360 X 10^3/uL

MPV 9.8 FL6.8 - 10.2 FL

Seg %38 %37 - 80 %

Lymph Manual %34 %10 - 50 %

Mono Manual %11 %0 - 12 %

Eosinophil Manual %2 %0 - 7 %

Baso Manual %0 %0 - 2 %

Band %15 %2 - 4 %

Seg Absolute3.5 x10001.6 - 7.3 x1000

Lymph Manual Absolute3.2 X10001.0 - 5.1 X1000

Mono Manual Absolute1.0 X10000.1 - 0.9 X1000

Eos Manual Absolute0.2 X10000.0 - 0.5 X1000

Baso Manual Absolute0.0 X10000.0 - 0.2 X1000

Band Absolute1.4 X10000.0 - 1.1 X1000

Total Counted100

Sodium141 MMOL/L135 - 146 MMOL/L

Potassium4.0 MMOL/L3.5 - 5.3 MMOL/L

Chloride107 MMOL/L98 - 110 MMOL/L

CO226 MMOL/L21 - 33 MMOL/L

BUN 9 MG/DL8 - 24 MG/DL

Glucose 84 MG/DL70 - 99 MG/DL

Creatinine 0.61 MG/DL0.50 - 1.50 MG/DL

Calcium 9.0 MG/DL8.5 - 10.5 MG/DL

Total Protein 6.5 G/DL6.0 - 8.3 G/DL

Albumin 4.0 G/DL3.5 - 5.0 G/DL

Total Bilirubin 0.6 MG/DL0.1 - 1.2 MG/DL

Alkaline Phosphatase 69 IU/L25 - 125 IU/L

AST (SGOT)17 IU/L5 - 40 IU/L

ALT (SGPT)16 IU/L5 - 50 IU/L

Anion Gap8 MMOL/L4 - 14 MMOL/L

Thats all I can get right now. I do have a CBC with differential but I cant see it in my health record. I'll ask for it

Gambit62 profile image
Gambit62Administrator

Have you spoken to your doctor? There is a risk of depleted potassium levels in patients with macrocytosis when starting treatment with B12 though your blood work isn't showing any signs of macrocytosis. Folate could also be an issue as Clivealive says - as that can also get depleted when you start treatment with B12.

However, loading can also be a bit of a roller coaster with things seeming to get worse before they get better.

mnburris profile image
mnburris in reply to Gambit62

My Dr just said do the protocol. 5 daily injections then a weekly injection for 5 weeks. Then retest the blood. I felt a lot better when I was doing the daily's. The fuzziness in my head went away, my joints stopped hurting, I could walk steady. I don't know if a folate test was done. Is there another type of doctor I should go see besides a general practitioner? I see a nurse practitioner and I really like her but this may be beyond her. My band% is super high which indicates an infection somewhere and that was never mentioned to me.

Gambit62 profile image
Gambit62Administrator in reply to mnburris

B12 affects a lot of processes in the body so cuts across a number of specialisms. Most of your symptoms seem to be neurological so a neurologist would seem the appropriate specialist but there really is absolutely no guarantee that they will know anything more about B12 than your GP or the nurse practitioner.

it might be worth suggesting to the nurse practitioner that she takes a look at the PAS website - they have an area for medical professionals and she could sign up for newsletters ... not sure if she would have to pay the joining fee but if she wants to learn more about the condition its a good starting place.

pernicious-anaemia-society....

mnburris profile image
mnburris in reply to Gambit62

I'll look into a neurologist. I'd like to know what going on while I'm double covered in insurance

clivealive profile image
clivealiveForum Support in reply to mnburris

Serum Folate (Vitamin B9 or folic acid) is not routinely included in blood tests and I think you will need to ask your doctor for it to be done.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health.

take plenty of sun else D3 8,000 - 10,000 IU and test after 6 - 8 weeks. Also K3 mk7 or Super K. You may have enough magnesium in your environment.

Katben profile image
Katben

Thyroid test if vitamin D is low I think

mnburris profile image
mnburris in reply to Katben

Thyroid test came back normal I think. I'll check. I am taking a Vitamin D supplement.

mnburris profile image
mnburris

Is the thyroid test called TSH?

mnburris profile image
mnburris

Heres my D results

Total Vitamin D 25-Hydroxy 18 NG/ML>=30 NG/ML

>30 NG/ML OPTIMAL RANGE 10-30 NG/ML INSUFFICIENT <10 NG/ML DEFICIENT

Vitamin D2 0 NG/MLNG/ML

Vitamin D3 18 NG/MLNG/ML

mnburris profile image
mnburris

Lord then I have these results

Sodium 140 mmol/L134 - 144 mmol/L

Potassium 3.8 mmol/L3.5 - 5.2 mmol/L

Chloride 104 mmol/L97 - 108 mmol/L

CO2 22 mmol/L20 - 32 mmol/L

Calcium 9.4 mg/dl8.6 - 10.2 mg/dl

Glucose 96 mg/dl65 - 99 mg/dl

BUN 13 mg/dl6 - 20 mg/dl

Creatinine 0.50 mg/dl0.57 - 1.00 mg/dl

Est. GFR Non-Black>90 ml/min/1.7>60 ml/min/1.7

Est. GFR Black>90 ml/min/1.7>60 ml/min/1.7

BUN/CREATININE 26.0 10.0 - 20.0

Anion Gap 18 mEq/l8 - 18 mEq/l

Albumin 4.6 g/dl3.5 - 5.5 g/dl

Alkaline Phosphatase 69 U/L25 - 150 U/L

ALT (SGPT) 13 U/L0 - 40 U/L

AST (SGOT) 17 U/L0 - 40 U/L

Total Bilirubin 0.4 mg/dl0.0 - 1.2 mg/dl

Total Protein 7.0 g/dl6.0 - 8.5 g/dl

KimberinUS profile image
KimberinUS

Hi there,i am in the US also.

Your regular doctor can request a folate, full iron panel and new potassium test. These are cofactors for b12 and should be monitored when receiving b12 injections. I wouldnt wait for a referal to a specialist before getting these very easily ordered tests done.

Going to a specialist is fine but they may or may not have any more knowledge about b12 deficiency and its cofactors, then your regular doctor.

I hope you feel bettee soon!

Lorilee60 profile image
Lorilee60

Hello! I also am from the u.s. -B12 level was 180 in May. Started with monthly injection until 3 weeks in I had researched enough to know that wasn't enough. They wouldn't do the daily injections here, but I did have 2 a week for 3 weeks and now I am on weekly for I do not know how long. For precautionary reasons I asked my doctor to order potassium and folate labs which I will do today. I had a lot of neurological issues and had been diagnosed only with migraines, but knew there was more to it. I do feel some symptoms worsening since going to weekly injections, but I also realize this can take time to recover from. I am seeing a GP doctor but he listens to me and is agreeable to increase as my symptoms dictate. I do not love the road I am on, but am so thankful to have answers finally. Good luck to you!

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