H everyone, I want to start off by saying, I truly understand what your going through living with Pernicious anemia. I've been living with this disease for many years & the side affects have become worse. I started having B12 injections every 6 weeks & now every 4 weeks. When you have Pernicious anemia, eventually you're levels will go down & you have to have injections for life because you can't produce "Intrinsic Factor" which helps B12 to 'Orally' absorbed in your body. Once you start on the B12 injections, you should wait approximately 2 weeks before getting labs to check your B12 levels. If you don't wait to get your labs then it's going to be a false positive which means you're labs say you have great B12 levels. That's false because you just had you're injection. I have to educate my Primary doctor on this matter on my next appointment date. Primary doctors don't know everything but, you can educate yourself and then your doctor if need be. There are so many side affects from this disease. Mine has progressed & I'm in severe bone pain. Autoimmune diseases can & will wreak havoc on your body. Study all the symptoms with this disease. Try to eat a lot of healthy whole foods like raw fruits & veggies mostly raw & juice some too.Take Care.
Long term symptoms of Pernicious anemia. - Pernicious Anaemi...
Long term symptoms of Pernicious anemia.
generally it's 3-6 months after an injection for measures of serum B12
2 weeks for IFA test.
Serum ;levels aren't particularly useful as a guide to whether your B12 levels are right for you after loading shots because the normal range really doesn't seem to apply at all.
Have you suggested to your doctor that they look at the area of the PAS website specifically geared towards medical practitioners. I assume that you are not UK based but they might still find the micro-site and signing up for the alerts useful
Hi winkyzeek2. Hello and welcome.
Just a quick thought...and following on from gambit's comments...has your doctor been keeping an eye on your folate, ferritn and vitamin D levels? People with PA usually have other absorption problems and deficient or low in the range levels of these can make you feel very ill - and the symtpoms are very like those of B12 deficiency (vitamin D deficiency, for instance, can cause bone pain - as can calcium deficiency).
Also note - B12 and folate work together so if your folate levels are low, the body will not be able to process B12 properly.
If you're on any other medications, it's also worth checking if any of these can cause particular vitamin deficiencies. Many do, for instance steroids can cause calcium, potassium, vitamin D, and folate deficiency (as I've found out, to my cost 🤔😀).
It's also the case that people with one autoimmune disease often (but not always) go on to develop other autoimmune conditions. If your symptoms are becoming more troublesome, it might be worth asking your doctor to do a full antibody screen to see if anything else is going on in the autoimmune department.
Also - have you had your thyroid tested - people with PA often have thyroid issues too. Most UK doctors only test TSH - to get a true thyroid status, ask for TSH, FT3, FT4 and the thyroid antibodies TPO and Tg (thyroid antibodies detect the presence of Hashimoto's thyroiditis - an autoimmune condition of the thyroid).
Hope you manage to find some answers to the increased symptoms....your doctor should be looking elsewhere and screening for other potential causes if these are becoming increasingly troublesome.
Good luck, post again if you need more advice or support, and let us know how you get on.
👍
Hi Foggyme, Thank you for the information. I have a lot of things going on with my immune system. It started in 1984. I gained a lot of weight in a very short time. I ate very healthy and ran 3 to 5 miles a day & exercised in my home before & after running. My long thick beautiful hair started falling out. My moods were sporadic and I was tired a lot. My back hurt a lot. I was sent to a dietitian to help me lose weight. Doctors didn't run test until 1990. I had hypothyroid & immediately was put on Synthroid. A few weeks later they increased my Synthroid. A few more weeks the doctor increased it again. I eventually was taking 500 MCG a day. I lost my weight & felt pretty good. Then at another doctor appointment, he felt something on my thyroid & ordered a ultrasound. I had a multiple nodular goiter on my thyroid gland. So he ordered a radiation pill test. I hope I said that correctly. I had to go back the next day to see if they could do a reading on the pill & they couldn't. eventually I had a bilateral thyroidectomy done in 1991 because the goiter kept growing. I was told that I had Hashimoto's Thyroiditis. Fast forward to present. I'm dealing with advanced Avascular Necrosis & had my 1st. surgery on my left knee. It was a real mess according to the surgeon because my tibea had completly crumbled away from the knee & a lot of my knee was also crumbled. It was a hard surgery. I now have 4 more surgeries coming up. My spine is serious according to the transcripts in my L4 & L5 & C4 & 5 too. I can barely walk & have to use a walker to make it from point a to point b. I also have a 10 plus mm growth called Lymphadenopathy. With these diseases going on for a while, I have developed a extremely rare disease called Panniculitis. Only 250 cases have been reported. I'm 251. My legs are very painful & one is extremely swollen from Panniculitis. I'm a fighter & I won't give up trying everything I can to heal myself. Ty for all of you're help. <3
Hi Winkyzeek2. I'm so sorry to hear that you've got so much going on, health wise.
Good to hear that you're a fighter. But goodness, it's such hard work when not feeling quite the ticket. So well done you.
Just a thought...don't know if you've seen it, but there's a very good thyroid forum here on HU. The folks there are extremely knowledgable about all things thyroid and will be able to help you if you ever need thyroid advice. Here's a link to the forum:
Good luck with the upcoming surgeries...post again if you need more help,or advice...or just to let us all know how you're doing.
Take care 👍
I rely on how I feel both emotionally and physically as indicators of my B12 levels. I get specific indicators like sudden mood changes, tooth pain & sensitivity, muscle fatiqgue. I self inject so my PA is manageable. There are permanent changes physically and mentally and emotionally. I cannot have stress....stress depletes my B12. I have learned to manage the stressors so they are no longer a factor. As far as other people causing stress...i have distance myself from life sucking toxic people. I cannot go back to 23 hours a day in the bed. the gift of PA is that i finally learned to put me first. For me PA is a Blessing and a curse.
Hi,
Hope your doctor has been successfully educated.
Some B12 books I found useful
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
Are you in UK? I'm asking because patterns of B12 treatment vary from country to country and sometimes the type of b12 used for treatment as well.
PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717
Based in Wales, UK but has members from around the world. PAS members can access support and info and details of PAS support groups.
pernicious-anaemia-society....
B12 Deficiency Info website has alot of B12 info, some aimed at UK.
If you're in USA, there is a B12 website called B12 Awareness.
I am not medically trained just someone who has struggled to get a diagnosis.
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