B12 Newly diagnosed, help please

[ladyabosso]

Hi, I wonder if someone could advise me please. sorry if it's too long a story but I feel you need the full picture,

I have been a member of the thyroid group for a while and have found so much help and advice on my thyroid function (or lack of it). My problems started when my mother died very unexpectedly in May 2016. After the initial grief subsided I began to feel very strange, memory loss, couldn't find words I wanted, very cold, tired etc. Having been a very stressed out person all my life (on anti D's for 21 years) due to a dysfunctional upbringing, I thought I would ask GP to check my cortisol serum levels. She also decided to test thyroid and found I needed to increase my levo from 75mg to 100mg. The cortisol levels were high 499 nmol/l (133-537) high but "within range" I then decided to get a salivary test done privately and cortisol was off the chart(high) and dhea low. Saw a private endo who asked GP to test for cushings.....normal result. Since then my serum cortisol has come down to 324nmol/l but nothing is being done about low dhea.

I also suspected my problem could be a b12 def due to my symptoms and the fact that I now realise my mother's symptoms before her death, related to a b12 def. She had peripheral neuropathy, temporal arteritis, low Hg, (3-5),low iron, confusion and after her death I discovered she had brain atrophies. I told my GP and I was tested for I.F and parietal cell abnormalities and B12. On the advice of the admins on the thyroid site I have since had the following tested, to find out why T4 is not converting very well to T3.

Vit D 61 nmol/l . Range 50-200

B12 . 311 ng/l . 180-900

active b12 47 pmol/l . 25.1 -165

folate 4.4 ug/l . >3.8

ferritin 28 ug/l . 15-300

I should mention that I take methotrexate 10mg per week for RA and folic acid 5mg once a week, two days later. Also Naproxen (NSAID) and omeprazole (PPI) to protect stomach lining from NSAID

Two weeks ago, I suddenly found myself very short of breath, even at rest and mentioned it to GP when taking in my active b12 tests for his opinion. He became very concerned, a chest xray was done..clear, an ecg..clear, finger Oxygen 98%. After this he has now decided from my latest bloods that I am borderline B12 def.

I had my first shot yesterday and will have another five in the next 2 weeks then one shot three monthly. He said he has decided to do this for a year!?? He didn't tell me but I have had to educate myself and realise I need co-factors which I intend on taking, Vit D top up to total dose 5000iu as I already get 400iu daily from gp as I have osteoporosis as my mother did as well as R.A. I need a good Vit B complex (Thorne basic B) K2-MK7 and Vit C if I need iron. My queries are:-

1. Is it the lack of B12 that has caused my ferritin levels to drop? Hence shortness of breath. Oxygen measured on finger was 98%

2. Now that I am having B12 shots, will my ferritin come back up to normal because GP didn't think my blood showed any real abnormalities? I didn't receive any advice about taking additional co-factors, minerals, vits. etc

3. Do I need to supplement iron/ferritin and if so how much and what type/brand?

I have been trying to get help with these problems for 18 months and now that I am getting something done about it, I don't want to mess things up.

Thank you for reading my story and I would appreciate any help you can give. I am also attaching some test results for bloods taken 16th October this year. My levels have dropped since August but I couldn't upload 2nd picture. It's taken me 2 hours to sort this one out. Sorry print is so light. Thank you so much.

Linda

[Myokie]

Ferritin is related to iron in your blood, and I am sure low levels will make you feel tired but it isn't the same thing as PA. I have had PA for 27 years - I was diagnosed through tests, and I have been self-injecting since. Things to keep in mind about PA that I've learned:

1) stress causes me to go through B-12 storage faster, so chill

2) everyone is different every 4 weeks may not be enough or maybe you are fine every 5 weeks.

3) have your doctor teach you to self-inject. It isn't a big deal, I promise, once you learn. Actually I think it is significantly less painful when I do it.

4) diabetic needles are not going to work for an IM injection unless you can give it to yourself in your arm - terribly awkward. I use the BC 25g 11/2 inch needle - I am a fat kneed lady and need the longer needle.

5) If you are prescribed injectable B-12 -

A) don't run it through your Insurance so that you can get all you need at once - it isn't horribly expensive to buy a year supply

B) Insist that your doctor prescribe, and more importantly your pharmacy sells you the 10/ML instead of the 1CC ampules - it is an annual difference of 50 to 60 dollars.

I get 10 doses with the larger bottle - your pharmacy will likely need to order it. They have a tendency to try to fill it with the 1CC and it will cost $120 USD instead of $50.

By doing the 10/ML I can easily manage how often I need a shot. Ask the doctor to prescribe a refill too and you are set.

Don't fret - PA is easily managed now that you know the problem. If you are like me, You will always know if you need a shot - for me my eyes feel dry, my tongue tingles and my feet feel like needles when your foot goes numb.

Hope this helps.

[Gambit62 Administrator]

The only thing you really need with B12 is folate - and the methotrexate is going to be interfering with that - which is why you are on the high dose of folate.

There are a couple of measures in your blood work that imply iron deficiency (which is not caused by B12 deficiency but could be caused by the same absorption problem that has lead to you becoming B12 deficient). Haemocrit and ferritin are low.

The RDW is very high which indicates that there is probably a mix of microcytic anaemia (smaller red blood cells - result of iron deficiency) and macrocytic anaemia (larger rounder red blood cells - result of folate and B12 deficiency) and the two are counter-acting each other in terms of other indicators so no clear sign of either other than the raised RDW.

Both microcytic and macrocytic anaemi will cause shortness of breath as they make your red blood cells less efficient at carrying (microcytic) and transferring the oxygen they carry (macrocytic).

Low ferritin - a measure of iron levels as it is a protein that binds to iron allowing it to be used - will not be corrected by B12 - you will need to take iron in some form to correct that. Please discuss this with your GP - it is possible to overdose on iron.

The only way to upload two pictures is to do two posts.

If you have neurological symptoms then the treatment should be shots 3xweekly until symptoms stop improving (review at three weeks) followed by maintenance shots two monthly.

refer your GP to the NICE guidelines and the BCSH guidelines.

They can access the BCSH guidelines through the BNF but they can also be accessed here

onlinelibrary.wiley.com/doi...

[ladyabosso in reply to Gambit62]

OH THANK YOU SO MUCH FOR YOUR VERY UNDERSTANDABLE EXPLANATION. In your honest opinion from the blood test results, would you mind me asking whether YOU think I have B12 deficiency? If so you think it could be an absorbtion problem, does that mean I should talk about them testing any gastric problems?The reason I ask is because the GP that has agreed to start treatment is the one that knows my life story including a history of severe depression as a result of my step father sexually abusing me as a young child and when informed 30 years later, my mother chose to turn the blame on me to justify her staying with him. I have been seeing him for 30 years. He is difficult to get hold of as he is now part time only and although I was seeing other GP's in the practice, it is only he that I thought may prescribe B12 shots. I have been fighting with the others for months. I am just wondering whether he has said I have borderline B12d to keep me happy and get me off his case! lol I certainly have some of the neurological symptoms, brain fog, memory loss, restless leg syndrome and cognitive problems, as well as the usual physical problems. He didn't ask me about these however. I will inform my GP about the NICE guidelines and actually, I came across them myself today and have bookmarked them ready to print off for him.

[Gambit62 Administrator in reply to ladyabosso]

I'm not medically qualified.

There is good evidence in your results above that you have a B12 absorption problem. The mechanism that allows you to absorb B12 is very delicate and when it goes wrong it really goes wrong. It may take a while (years or even decades) but eventually you will become B12 deficient unless you find another way of getting B12 into your blood. Injections are the most efficient way of doing this.

Symptoms imply that you are already experience B12 deficiency though needs to be noted that there is a considerable overlap between the symptoms of B12 deficiency and other conditions, so there could also be something else going on.

Sorry but the honest truth is that there isn't a good test for B12 deficiency so this isn't an exact science.

PA (pernicious anaemia*) is the most likely cause of B12 deficiency but other possibilities include the PPI (omeprazole you are taking), low stomach acidity (which could also be the result of PA), h pylori infection, coeliacs, crohn's.

*pernicious anaemia is a bit of a misnomer - coming from history of when it was first identified as a disease a couple of centuries before the actual mechanism became known. macrocytic anaemia is a common symptom but isn't present in about 25% of those who have B12 deficiency.

[ladyabosso]

Thank you so, so much for your excellent advice. I did see your name on the thyroid sister site and thought you were very knowledgable on b12, but decided to come here as this is my big problem...and here you are! Hopefully if my b12d improves, my thyroid might start converting better from T4 to T3. If it works, I will not know myself and neither will my long suffering husband. Fingers crossed. Once again, my thanks for your expertise.