I went to see my Rheumy today about the pain I have in my feet. While I was there he told me about my last blood test results. My MPV is up considerably. I'm only taking Plaqueil so they shouldn't be up. He test me for B12 and Selenium deficiencies. Does anyone have this?
I dont have enough B12!!! I didn't know this until I eventually started to loose the feeling in my feet. I get B12 shots every 3 weeks now. The numbness is still there but it is no longer progressing. I have even lost the reflexes below the knee. Without shots I am still in the "normal" range of B12 but way at the bottom. The pill for doesn't absorb. You cant OD on B12 like some of the other B vitamins. It helps me a huge amount. I have way less fatigue after the shot.
not sure about my selenium levels but yes I also have problems with B12.
My intestinal system went through the wringer a few years backa dn I imagine I am no longer producing intrinsic factor -hence can't absorb any B12 I take in orally.
I am using a sublingual form currently.
I also have some peripheral neuralgia due to the deficiency
Hi
I've taken a selenium supplement ever since my thyroid went wrong. I take it because apparently selenium helps T4 to convert into T3 and Levothyroxine is just T4. Before taking the supplement I used to really carve Brazil nuts. They are apparently rich in selenium.
Take care - Scottie :)
Thanks you for your replies. I think I do have deficiencies in both and have had for awhile. I know my Mother does. I hope with B12 I can have more energy. Mine is so low now. I guess this is another gift from SJS.
How do you all take your Vitamin B12 supplements? I have read that you can't take it orally, but sub-lingually.
When I put the tablet under my tongue, HELLO! No spit! Tablet just sticks there and I end up chewing it up and swallowing it.
Do you get B12 shots? How often do you have to do this? Does the doc only give shots when your level is down to whatever?
I get B12 shots. Ingested B12 doesn't work and sublingual is not as effective. Initially you get shots once a day for 7-10 days depending on how deficient you are. They usually want you to come to the office for those, as they want to make sure that you don't develop a problem with your potassium levels.
After the initial boost, you typically get shots once a month, but can be as often as every 2 weeks if you are severely deficient. If you are not squeemish, you can give the shot to yourself in the thigh. They should have a nurse available to show you how to do it. That is what I do.
Hi again :)
Mt understanding is that a lack of B12 can be another AI disease - pernicious anaemia. It's not a gift of SjS - its just another disease in the potential pack.
Take care - Scottie :)
I give myself B12 shots every 3 weeks. When I started on the shots I would get them at the dr's once a month. So about every 4-5 weeks depending on when I could get there. I wasnt sure that the B12 would help or that maybe it would be psychosomatic. But it was my husband who first saw the difference. He pointed out to me that after the shots I would be able to do more stuff. My energy would go up and I would even have energy to do optional things like bake cookies. I found the last 2 weeks before the shot to be a real drag. Then my dr said not to punish myself but to start getting the shots every 3 weeks. Now I can tell when I am due for a shot without looking at the calendar because of my energy level. Eventually I got fed up with getting my shots at the Dr's office. The waiting room there is always full of germs. So, I got up the nerve and have been giving myself the shots ever since.
I eat a few Brazil nuts every day for my selenium. Like Scottie said, helps with thyroid conversion.
I had low B12 (220). It has been posted about a lot that you shoild get your actual B12 number because what some doctors say is "normal" is still low. Other countries would start you on B12 shots if your level is below 500. In the US, that is considered normal.
I tried chewable & drops & my level did rise to 2,000. However, my doctors chose to put me on shots because they said that the blood test cannot show how well your body is absorbing the B12 but only what is floating around in your blood. The blood test a good checking tool still but with people with autoimmune & stomach issues they suggest injections.
I get a shot in my rear twice a week. They taught hubby how to administer the shots & I get them from a compounding pharmacy because there are other things that should be taken with B12 (I can look & post that later but having brain fog). You also only want the methyl B12 for the shots.
I don't even get my levels checked anymore, obviously it's fine. Docs want me to take them indefinitely because of my SFN & how much it helps repair nerves & has helped my symptoms.
Good luck, everyone is different but I'm not giving uo my B12 shots or my plaquenil!!!!!
Carie
I got my B12 results this morning and they are low but not very low. He wants me to try the drops under the tongue and be retested in 3 months to see if I have had any improvement and then we will see where we go from there. I think I have just been have a really bad time with SJS fatigue lately. It's kind of hard to tell the difference--no energy or SJS fatigue
Scottie I didn't know this about the selenium, and low thyroid. I have taken the meds for low thyroid forever. I will have to add that. How much do you take?
susanep :)
Hi susanep :)
I take a brand called "Valupack Selenium with A C E" it has a 100mcg of Selenium in it. I don't know if it helps or not but it stopped me craving for Brazil Nuts!
Take care - Scottie :)