Can anyone advise....I have been feeling dreadful. I am diagnosed with an auto immune disease but don't think that is causing the issue.
So I was on interferon for 3 years. I was fine for a long time. About a year ago start to feel bad. Tired lots of hair loss. Muscle cramps. Abdo pain. More recently sympyoms of peripheral neuropathy. Insomnia. My blood tests show b12 and zinc a bit low.
Vit b12 not low enough to do an absorption test. It is odd because I was taking 2 supplements containing b12. My mother had pa. I am wondering if this could be a med related issue. Stopped interferon. Waiting to see what happens now. Blood test to be repeated in January.
I am currently taking a zinc supplement but holding off on b12 until the bloods are done.
perhaps this is a question for the physician who prescribed the interferon...this physician will know whether you took alpha, beta, or gamma; know what your immune disease is; be privy to your blood work; and should be able to explain the long term recuperation you face....hugs
Thanks for your reply. I know you would think that is how it should work but he doesn't seem particularly sure either lol x so I wondered if maybe someone on here my have experience of using a similar type medication and ending up with a vit b12 deficiency and if it righted itself.
It was interferon alfa by the way. I will see my specialist sometime soon. Thanks for your teply.
You say your "blood tests show b12 and zinc a bit low."
It would be good if you could get the test results and the ranges <from - to>.
Sadly the ranges are based on the "average" person and we are not all average.
It seems odd that your B12 level was low having been taking supplements - this suggests that you may have an absorption problem and that could well be something to do with your medication.
But the "crunch line" in your post is that your Mother had P.A. and this can be "inherited". If your doctor does not already know this fact he should be told and then he might well start treating your neurological symptoms in line with the BNF Guidelines as below.
Treatment of cobalamin deficiency
"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"
I'm not a medically trained person but one who has had P.A. for 45 years.
I wish you well
Hi...thanks for your help there. I do have the results somewhere and will post them on when I get a chance. I will get back in touch with my gp.
I also did wonder if the low zinc can be linked to low vit b12??
this is per USA....
interferon alpha can cause latent B12 deficiency to come to the forefront...this is rare...
hope this helps you out...pm and I will research for you...hugs
Ok. That is so interesting thank you.
I don't know about zinc except I've been taking a supplement of 1 Zinc 15mg + Vit C 80mg every day for more years than I can remember.
If your B12 is low you also need to know what your Folate (B9) level is as this is essential to process the B12 - the two work together
as did I....the catch was alpha
After only 8 days on zinc supplement I feel a diiference. Change in my skin already. I will be in touch with my gp today by e mail. To be fair to her I forgot to mention pn symptoms and had been meaning to e mail her anyway. So much else going on I forgot to mention it twice to her 🙄
patient 1....had chronic hepatitis C...developed pernicious anemia during second month of interferon alpha...administered B12....patient responded well.
patient 2...had hepatitis C virus....also had interferon alpha...developed pernicious anemia during second year of maintenance IFN
Thank you for your time and effort. People on this site are so kind. Thanks both of you.
if you were on b12 supplements it would not give you a correct reading, you have to be off them for a few month before being tested, i have started getting digestive and abom. probs i think its due to low stomach acid x
what are low zinc symptoms , i am waiting on my results for zinc it is a private blood, do you take supplements from your gp for it .
hi Anne, I have had a variety of symptoms. Are they zinc or b12 or both I don't know.
Sweating a lot. Disturbed sleep. Dry skin, nails breaking. Hair thinning. Very tired. Very very grumpy. Muscle cramps and what appears to be peripheral neuropathy but undiagnosed. x
can you buy zinc or does the gp have to give you the correct dose x
hi, not sure. I think this is prescription only. Not at all sure if you can buy it over the counter. It is called solvazinc and it is errervescent tablets. But I would have the blood test result first because seem to remember reading somewhere that too much zinc was just as bad as no enough. This is something your gp should do for you if you ask them to check it. My gp suggested it I think because of hair loss and general symptoms I had been having.
yes ive done a private blood will let you know the outcome
you are se welcome...hugs