How long do things get worse?

[aksundell]

I was diagnosed with B12 deficiency about 7 month ago,with a low normal B12 level and high normal MMA and homocysteine. I had been having 6 months of daily headache and parethesias for about 1 month. I also had decreased sensation to pinprick for an unknown amount of time which makes me wonder if I was just unable to appreciate what was going on with me. I got better for the first 3 weeks after I started B12 shots, but then my headaches, fatigue and paresthesias got worse, spreading to my whole left side. And I developed a palsy in my left vocal cord, which is now preventing me from working my full schedule. My GP, neurologist and hematologist all think there must be something else going on, but are at a loss to come up with any other explanation. I stopped arguing with them about B12 dosage 2-3 months ago and secured my own supply and have been self injecting daily or twice a day as needed. I’m definitely worse without the B12, but I’m surprised that my voice is not better, as this symptom didn’t start until after I started with my B12 shots. My folate and iron levels have always been good and I’ve had lots of normal imaging studies and other screening labs. I have a strong family history of pernicious anemia. I appreciate any insight you all can share. I’ve learned so much from reading other’s posts. Thank you!

[Gambit62 Administrator]

7 months after treatment I really wouldn't expect things to be continuing to get worse, unless you were undertreated - and if you are injecting as frequently you are I very much doubt you are undertreated. I'd be inclined to agree with your GP, neurologist and haematologist that there is probably something else going on. B12 symptoms overlap with a lot of other conditions. There is a high cross-over with other auto-immune diseases that do have very similar symptoms,

[clivealive Forum Support]

Hi aksundell you say "My folate and iron levels have always been good..." have they been tested recently now you are self injecting?

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.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Hidden]

Hi, I wonder if it would be worthwhile for you have a full thyroid panel done to rule out/in hypothyroidism, as many of the symptoms of hypothyroidism overlap with those of B12 deficiency. The NHS are only inclined to do TSH, but this doesn't give the full picture and you need along with TSH, T4, T3, total T4 and the antibody tests, TPO (thyroid peroxidase antibodies) and TGAb) thyroglobulin antibodies. The antibody tests will confirm whether you have Hashimoto's, the autoimmune version of hypothyroidism. Its a bit of a shot in the dark but I wonder if the problems you have with your voice might be related to your thyroid.

Although I have had Hashimoto's for around 15 years I have only been SI B12 for around a year as I was unable to get a diagnosis due to in range B12 and endo not prepared to do further tests even though I had severe numbness in my toes, speech problems, brain fog etc.

I have no history of PA or Hashimoto's in my family, but once you have one autoimmune disease it is very likely that a second can develop.

The following link gives an idea of the association between B12 deficiency and Hypothyroidism. I picked it at random so I am not guaranteeing the information but it might give you sufficient information to extend your research.

progressivehealth.com/b12-t...

[aksundell]

Thank you all for your comments and consideration. I think I wasn’t very clear in my first post, but most of my neuropathy is improving now, except my voice, so I am still hopeful that I just have this one thing going on. It is weird though, I think, that my symptoms seem to have gotten worse and are now back to the few I had when diagnosed. I think maybe I was having more pathology before I was diagnosed that I didn’t pick up on because my nerves weren’t working. I’m hoping they will continue their slow improvement. I am still pushing my doctors to figure me out, so I guess I’ll see if they can come up with anything else. I’ll ask to be rescreened for thyroid, folate et al. Thanks