hello, first post so I’ll try to keep it concise as I have a lot going on. I appreciate any tips and/or input you care to share.
I’m 55years old, post menopausal and I have hashimotos, lupus, anti phospholipid syndrome and had a thyroidectomy years ago. So figuring out symptoms has always been a challenge. A challenge that most drs don’t care to take on. My b12 levels have been at the bottom of the range for over 6 years now. Bottom is 220 and I’m at 222 last tested. I’ve questioned multiple drs about it and all have said I can supplement if I want to. Over the years I have supplemented on and off but I always feel like the b12 stirs up my anxiety and so does all the B complex brands I’ve tried. I have suffered with anxiety, panic, phobias and now depression for the last 10 years. But it’s gotten worse in the past few years. I’ve always blamed my mental health issues on my thyroid levels not being optimal and I’ve been searching for the perfect dose of t4/t3 to fix everything. Not having a thyroid is a challenge. Most drs over the years have just prescribed SSRI’s or benzos, haven’t found anything that actually helped and I’ve tried many.
I finally found a dr that thinks my b12 is abysmal and I received my first injection almost 2 weeks ago. She has prescribed them for every 2 weeks at first and then once a month. I’m getting my iron labs done again in 2 weeks. Last iron labs my ferritin was good but my actual iron labs were in range but at the bottom. I don’t know if that’s an issue? Mostly I see people commenting about low ferritin but mine isn’t low. I’m also being tested for celiac and again for PA. My hematologist tested for PA 6 years ago and it was negative. Can it change?
I’m also wondering if I need to take any co-factors? Or other b vitamins now to make my b12 injections work better? Should I be trying to take sublingual b12 between my injections?
I think my low b12 symptoms are mostly mental and tinnitus. Although I’ve read in the group about balance issues and now I wonder if I’ve had something similar for years. I feel off when I walk. I can’t look around when I walk, I have to look down or else I feel woozy.
After my first injection I didnt feel any different until about 2/3 days after. I think my anxiety lessened a little and I felt quite good but it only lasted about 10 days. Now I’m back to feeling the way I did before the shot - anxious and a little more depressed. Oh and now I have acne since the shot. Can low b12 present as mostly mental symptoms?
I’m currently trying to read and learn about low b12 but if you have any thoughts about my situation I’d like to learn more from members here.
Thank you.
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Knittergirl3
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I discovered that low B12, low ferritin and low iron gave rise to anxiety. As I began EOD SI B12 the anxiety improved. The same after a ferritin infusion and again after I began taking heme iron. Anxiety can be as much an indicator of physiological deficiency or illness as a purely psychological indicator of stress.
Yes mental health is part and parcel of PA. The fact that injections made a difference, then you reverted, shows you need them more regularly. Folic acid works hand in hand with B12, but you must be getting enough B12 first. Vitamin D and magnesium are important too. Vitamin D spray when not enough daily sunshine and magnesium lotion or Epsom salt baths are best, from my experience, rather than pills. Big hugs, spoil your self with good quality natural, unprocessed foods.
Thanks for commenting on my post. I don’t think my dr will go for injections more often. Is there a b12 supplement I can take between shots? Also, when should I start a b complex or folic acid ? I currently don’t take any supplements. I know that I’m hetero for MTHFR but don’t really know the in’s and outs of all that. I tried to research my DNA results a few years back but it just increased my anxiety and overwhelmed me.
Don't worry about the MTHFR stuff. Almost everyone has a couple wonky mthfr genes and it doesn't cause any problems. This is a link to what 23 and me has to say about that blog.23andme.com/articles/o.... I, like you, had horrible anxiety issues before I started treatment with B12 shots. Early on, I discovered that methyl B12 supplements increased my anxiety and caused insomnia so I stay away from anything that has a name that starts with methyl.
Have you talked to your doctor about more frequent shots? I only ask because my doctor initially put me on the same injection schedule as you, 6 loading doses and once a month for the rest of my life. I felt really good for two weeks after and started to slide downhill during the fourth week. I told my doctor this and he was more than happy to let me get shots every three weeks. I'm now at the point where I get my prescription filled at my local pharmacy and I self inject every two to three weeks, depending on how I feel.
Thanks for the encouragement. I hope my anxiety lessens also. I get my second shot tomorrow. Today I feel like I’m back to my usual anxious self so my good days were fleeting.
Do you take a b complex? Or have a recommendation for one that doesn’t cause anxiety?
No, I don't take a B complex. I do take magnesium and calcium to help me sleep. Menopause messed with my sleep. I also occasionally take an easy to digest iron supplement, it's called spa tone Iron supplements didn't agree with me until I found this product.
After 6 months of treatment I noticed my anxiety seemed to stabilize. It felt like a roller coaster at first, up and down between shots. Now if I need a shot I'll notice myself starting to bite my fingernails or the tip of my nose will start to feel cold again. Then I give myself a shot.
I can’t wait for my anxiety to stabilize! I’m so happy yours has. Anxiety is miserable to live with every day. I guess I’ll see how shot number 2 goes tomorrow. I sure hope it lasts longer this time.
I’m really unclear about what my iron results mean. I’m getting them done again in two weeks. My ferritin isn’t terrible but my actual iron panel was all at the bottom of the range. I’m unsure if I should be supplementing or not. And so far any dr I’ve seen thinks if it’s in range - “it’s fine”… kind of like my b12. 🙄
Yes, I order from Biosense Clinic. The company is located in Canada. Be sure you order the single dose vials, not the multiple use bottle. I get my needles either from my doctor or from the pharmacy. I inject in the fatty part of my stomach. The first time you do it it's a little scary but you get used to it. I haven't experienced any pain when injecting.
No, but I do have to pay for them since they're not part of the prescription. If I wanted to I could get them from my doctor's office but I don't usually feel like driving there.
As you are in the USA hopefully you can easily get the B12 to inject yourself as and when you need it. Lots of us on here do every other day.I like Floradix as an easily digestible B ++ complex. A diet rich in grass fed meat, eggs, fish, organic greens, fruit and nuts is the best way to do it. I'm sure you know B12 is only available for humans through eating animal products and if you have Pernicious Anemia you can't absorb it anyway, you have to have injections.
Gosh you do seen to have a full house of autoimmune conditions. That's definitely beyond my knowledge. What I do hope for you, is that with enough B12 functioning in your system, as it's vital for blood oxygen, DNA and protective nerve sheath, your other issues will improve.
Well I usually get the one with iron, because I need iron. It does contain B12 , which may or may not get in the system. But not folic acid which you do need too, as far as I understand B12 works in conjunction with folic acid = vitamin B9.
If you only feel better for 10 days, it would be a good idea to try more frequent B12 shots. Lots of people start with every other day loading doses. There is a big problem with the PA test. If it is positive you have PA with high probability. But that test has a very high false negative rate. So a negative result does not rule out PA.
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