Vitamin B12 Deficiency

[Heather270240]

Hi everyone for responding to my earlier post and for your helpful comments.

My readings were part of the FBC which was higher than normal at 514. Other readings were

MCV 106 high

MCH 33 high

MCHC 314 low

GP said not urgent so no further blood test until end of October and GP in November.

I have all the symptoms of B12 deficiency which have been gradually getting worse over the past 6 months. GP said it was silent migraines and gave me Amitriptyline which I took for a few days but was so ill with heart palpitations I thought I was going to die. I have phoned my haemo Nurse for advice. Hopefully she will respond.

[notalone]

The dosage may need to be adjusted. It made me gain weight.

[Heather270240 in reply to notalone]

I'm assuming you mean the Amitriptyline which I don't take now.

[hunter5582]

Amitriptyline (AKA Elavil) is an old-school tricyclic antidepressant that also has indication for neuropathic pain and migraine prophylaxis. It comes with a host of adverse effects. Good for you for recognizing what was going on discontinuing it and pursuing a more accurate diagnosis and appropriate treatment plan. Unfortunately most docs receive little training in nutritional deficiencies. If Vit B12 deficiency is present, it does need to be addressed as part of your tx plan. Note: I also have severe Vit B/Folate deficiency and no one knew until I consulted an Integrative Medicine Specialist. Integrative/Functional Medicine docs are way more knowledgeable and aware of the role nutrition play and what to do about it.

Hope you get answers soon.

[Heather270240 in reply to hunter5582]

Many thanks for your comments. I went to a private nutritionist many years ago who diagnosed my ME. At the time I was so ill and my GP just gave up. Unfortunately she has now retired and because of COVID it's difficult to find anyone I will have to wait until November when my GP will phone me!

[hunter5582 in reply to Heather270240]

Would that be the same GP who gave you the Amitriptyline? Having some doubt about that. I have heard there are some private pay Integrative Med docs in the UK (if that is where you are). Don't know if that would help, but pretty sure waiting until November to get relief when you are symptomatic now is not an optimal plan. These docs are often not covered in health plans here is the USA, so I do private pay. It is expensive, but worth it.

Hope you get answers and solutions sooner than November. Maybe the hemo-nurse will be able to help.

[Heather270240 in reply to hunter5582]

Haemo said I had to have 3 consecutive blood tests showing deficiency before treatment is considered. Yes same GP he calls me his mystery patient. Unfortunately due to COVID I can't change. I feel so depressed about it all. 6 months ago I was cycling and walking miles now I am so weak and exhausted I can hardly do anything.

[hunter5582 in reply to Heather270240]

I am very sorry to hear about the difficulties in your access to the healthcare you need and deserve. The only thing I can suggest is that assertive patients receive higher quality care. Passive patients do not. Since you are actively symptomatic for one of the things well known to be a MPN related issue, perhaps the hematology care team can help sooner rather than later. They are more likely than the GP to understand what is going on anyway.

All the best to you. (FYI - I take a high quality Methyl B complex capsule recommended by my Integrative Medicine Specialist. It has brought my levels back up).

[Heather270240 in reply to hunter5582]

Many thanks for your help. I assume you are in the States. I am in the UK.

[hunter5582 in reply to Heather270240]

I am in the States, Harpers Ferry, West Virginia. I am fortunate to have access to high quality healthcare, including the MPN Clinic at Johns Hopkins Hospital. I also have to ability to seek care outside of my healthcare system when I need to, but it is expensive to private pay. Can only do but so much of that. I do have to pay for all of the complimentary healthcare out-or-pocket. Integrative Medicine, supplements, massage therapy, etc. do all add up.

I hope you find what you need soon.

[Heather270240 in reply to hunter5582]

Many thanks.