I hope you are all doing well! Here in the US we are gearing up to celebrate Thanksgiving. I just want you all to know how thankful I am for this community and the endless amount of information it provides. You have all had an impact on my life and for that I am thankful.
I have been injecting cyno about every 9 days for some time now. I am so much better than I was at my lowest point. I am able to work, live my life, and I’m even expecting my second child in April. The one thing I still notice is that I have a small handful of symptoms that just keep hanging on. Not constantly by any means but they just come and go without any real identifiable reason. I still get short of breath (I can take full breaths but my body just feels like it’s not getting enough oxygen). I get shaky feeling, brain fog, and I get a tightness in my chest that makes it feel like my heart is working really hard to beat. I’m cold a lot and My sinuses also inflame randomly for no reason.
This has been the same since before becoming pregnant so I am not thinking this is caused by that. I test myself and my blood oxygen is always 98-99. My RBC is low end of normal at 3.74 (range 3.69-4.92) and hemoglobin 11.9 (range 11.7-15.3). Vitamin B12,B6,and folate are all above range. Low end of normal range for B1,ferritin,D. Taking 50 extra mg of B1, 2000IU of D, and 28mg of iron. I also try to eat food rich in potassium. Just trying to figure out this last piece of the puzzle. Could this still be due to having low B12 for years (I suspect).
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My experience was that some symptoms took a lot longer to improve or disappear so you may find with continued treatment that the lingering symptoms do eventually improve.
I do have some that seem to be permanent and I assume that this is due to the length of time I was left untreated. I need far more B12 than UK guidelines recommend and my symptoms return very quickly after a B12 injection.
NHS in UK normally uses hydroxocobalamin for B12 injections.
Has your doctor given you any advice on how much iron to take?
"Vitamin B12,B6,and folate are all above range"
Do you take a B6 supplement?
Taking large doses of B6 has been associated with neuropathic symptoms in some people so worth talking to GP if you have any concerns.
I guess that expecting a baby (Congratulations ) places some strain on the body and it may be difficult to work out what is due to pregnancy and what is due to B12 deficiency.
Have you had any thyroid tests and tests for diabetes?
Thank you so much for your reply and abundance of knowledge!!! I have been receiving injections for 1.5 years now at different frequencies. Is it possible my healing may be taking that long or that these last symptoms could be permanent?
I am still improving 8 years after starting treatment....however I was left untreated for many years as the B12 deficiency was not recognised for over 15 years.
Thyroid has been tested and so has blood sugar. I have a small amount of B6 in the daily vitamin I take. I had a ferritin test and it came back very low end of standard range. Maybe I will discuss iron further with my physician.
TSH, T3, and T4. I will post to thyroid page. Thank you!!
Celiac runs in my family. It almost killed my grandmother way back before anyone knew what it was. I have been tested 2x with negative results. I gave up gluten for a year with no noticeable difference. I try to eat very little gluten and wheat. I did have a gut test done last year and it found dysbiosis which was some imbalance in my gut bacteria. I now take the probiotics my doc recommended and eat fermented food. Had to cut out a few things (oil of oregnano, turmeric, berberine) due to them not being super safe in pregnancy. I have zero digestive symptoms but I know food allergies can manifest in odd ways.
May I ask, how often do you receive injections of B12?
I'm in UK and get B12 injections every 2- 3 months from NHS.
I have to treat myself as well as this is not enough for me.
NHS in UK tends to use hydroxocobalamin for injections although there is one UK forum member who gets cyanocobalamin injections. Probably some people in UK get methylcobalamin injections privately.
When you were tested for coeliac, which tests did you have and were you eating a diet with lots of gluten in it prior to your blood being tested?
In UK, two first line tests are recommended
tTG IgA test which checks for a particular antibody to gluten.
Total IgA test which checks if a patient has IgA deficiency.
A patient with coeliac disease may get a negative result on tTG IgA test if
1) they have IgA deficiency
(because their body does not make the antibodies that tTG IgA test looks for)
2) they have not been eating enough gluten prior to the blood test so there are not enough antibodies circulating in blood to register a positive result.
There are other blood tests that can help diagnose coeliac disease. See coeliac link in my other reply.
Coeliac disease is sometimes diagnosed in UK by a gut biopsy.
In UK, patient with suspected coeliac disease who have already cut out gluten from their diet are supposed to be referred to a gastro enterologist.
Have you had any endoscopies to look at your gut?
There is also a skin manifestation of coeliac disease called dermatitis herpetiformis.
I’ve been getting injections for 1.5 years now at different frequencies. Sometimes not enough and sometimes a little too much. I’m just trying to figure out if healing could really take this long or if maybe I have permanent damage or something else going on I can’t figure out.
Have you ever tried a long stretch of increased frequency of injections? The trick for me has been weekly injections over a long period of time—over a year. I had weeklies before, but they were cut back to every other week too soon—only after a few months.
I don’t think I would ever have gotten better if I had stayed on every other week injections. From my experience, high levels in the blood can take a while to trickle down to the tissue level resulting in complete or nearly complete resolution of symptoms. Staying the course is key along with patience. Best of luck to you!
Thank you so much for your reply. I have done this but for only about 2 months. I seem to be an idiot sometimes and start to feel better and get over confident and start stretching out length between injections. I’m going back to weekly. Thank you! I wish you well!
Congratulations on your second pregnancy. Yes, as others have said ask for an iron panel. Low B1, magnesium is needed to activate this - so also ask for this to be checked. Are you taking vitamin D3 with K2. ? I hope you find some answers.
I don't really have advice, but I have also been on injections for about the same amount of time. I tried spacing mine out too every 2 weeks a few months ago. I am currently doing cyanocobalamin once a week, and am still symptomatic. My shortness of breath sounds the same as you describe. 24/7 I feel like I cannot get a good breath. And I have terrible brain fog! It's so hard to tell if we need more injections or more time. I'm thinking that I need both at the moment!
Also congratulations on your pregnancy! I hope that I can experience the same here soon
You might want to get your homocysteine levels checked - if you haven’t already. The B12 deficiency can elevate it and cause all sorts of issues. I also have Omega 3 and D deficiencies- now that I’m treating those - some of the weakness/breathlessness is gradually improving. I also had an ATP intracellular test that showed mitochondrial dysfunction & MDA-LDL that showed oxidative stress. It seems all these deficiency induced conditions could cause lingering oxygen issues. More recently I’ve been reading up on methylation. Dr Kara Fitzgerald has a good ebook - but it’s a bit pricey. Since you’re in the US, maybe you could get to a functional medicine doc for a consult or more testing. Wishing you health & a great Thanksgiving. 💗
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Will a daily Multivitamin give me enough? 
High active B12 but I have all the symptoms of B12 deficiency
a question about symptoms being really bad then better day to day
Serum B12 level 160ng/L with symptoms, Doc says just take a multi-vit for now.
Confused by B12 deficiency symptoms 
