I am new here. I was just diagnosed this week. I had been diagnosed with Hashimoto and then given iron infusions. Then blood tested and showed I had PA too. It was a big shock. I live in Holland. I am currently getting 1 injection a week for 5 weeks and then the doc will review it and see if I am ready to go to one injection a month. I’m a bit nervous as I have read that I need way more than that? My B12 count was 152. What should I be aiming for before I go to monthly treatments?
Sorry if that’s a stupid question - I am learning about this…
I am 45.
Mnay thanks,
Dianna
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DiNL
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No - I have other symptoms that you shared on the link but they are not neurological ones. Does this make sense? I have things like premature grey hair, palpitations (although these could also be hormonal) and I have a weird shaky feeling in my tummy that feels like anxiety but sort of bubbles… I thought it might be hormonal too…. But could be this? Since I have hashimotos too some of the symptoms are similar to one another… but I don’t think I have any neurological ones. I am suffering from anxiety and I would say I have been quite depressed and my biggest issue is the lack of sleep!
So if this is the case then do u think this is the correct treatment plan? I go and see the internist on Tuesday. I had my first shot of B12 last week, one today and get another one on Tuesday.
Sorry maybe that’s an unfair question. It’s just I am confused about it and looking for reassurance I guess. I have felt very unwell the past few weeks and have been off work. The GP said it was burn out and then they saw I was very very anemic. Iron of 2! So I was given Iron infusions and my iron is a bit too high now but it’s way improved. I was sort of told this as a fly away comment - oh and now you need vitamin b12 because you absorb poorly and then I saw the diagnosis on the blood tests as pernicious anemia…. So I was shocked and scared and worried…
In all of this I have also started HRT so I am a bit of a mess right now…
So appreciate your thoughts. Thank you for taking the time to reply.
Disclaimer : I am not medically trained. But yes I think this is probably a reasonable treatment plan considering no neurological symptoms.
The strange thing I'm learning about B12 deficiency is that some suffer neurological symptoms at low normal or even normal/high B12 levels, while others with quite low B12 serum on paper sometimes do not seem to have as advanced a deficiency as others who never had a B12 that low. It's all mighty confusing.
You will have to assess if the treatment helps your symptoms at the planned frequency. If the deficiency is not severe its possible that once a month will work for you to keep symptoms in check. But on the face of it, the treatment plan does not seem unreasonable considering no neuro symptoms present.
The trouble is you also have simultaneous conditions like low iron and hashimotos, for which there is some symptom overlap with B12 deficiency that can be a little difficult to differentiate until both are satisfactorily treated.
thanks for your wise words. It means a lot because I only heard yesterday that this was diagnosis and getting to grips with just hearing the diagnosis is hard enough, u know?
My iron levels are now normal and stablised and my thyroid is now 3.6 - which is not that low but within normal range.
I am just not sleeping much at all but not sure if this is my hormones or the darn PA… u know? Like u say, so many things overlapping here. Thanks again for your opinion, thoughts and reassurance.
Hi DiNL - we have almost identical symptoms. Female, same age, iron level of 2 with iron infusion and very low B12. My blood test showed <96 so I’m not even sure how low. I have very high thyroid antibodies even though my thyroid hasn’t been affected yet (so I’m told) but Hashimoto’s runs in my family,
I started on weekly injections and like you I surprisingly do not have neurological symptoms. My symptoms were extreme fatigue, low mood and terrible sleep patterns (sleeping 2hours at a time). I have been great on weekly injections and now monthly (was diagnosed in August). I’m in Canada however so I can buy cyanocobalamin over the counter and self inject whenever I feel I need it (stress, exercise, some meds affect B12) more than once a month. That may be another option for you. Please let me know if you have any questions as our symptoms seem very much the same down to the bubble feeling in your stomach!
My sleeping has been a bloody nightmare. I have tried melantonin and every pill u can get. The GP gave me light sleeping tabs but to be honest they are addictive and don’t work that well with me. So I don’t bother. Even if I take them I only manage 3-4 hours!
I had another B12 shot yesterday and I slept quite well lastnight. Sure, I woke up but it was a good sleep…. I’ve been struggling for so long with this sleep issue that I was getting so despondent and even more down! So please tell me your weekly injections have helped u to sleep better??
I live in the Netherlands. I am not even sure if u can self inject here? Have no idea… but I will be finding out soon!
One of the members replied with a list of links to organizations here and I phoned one of them this morning… they are specialists in this area and when I told the lady what my B12 count was she said that it was far too low. Even though the internist here said 152 was within average.
I have been struggling with this anxiety feeling. I thought it was my hormones - being 45….. but it could be related to this PA.
Thanks so much for your reply. This Group is simply wonderful.
I found that taking a magnesium supplement improved my sleep.
Have your doctors checked your magnesium levels?
Some people may get a drop in potassium levels when B12 treatment starts so your doctors may want to check your potassium levels.
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thanks sleepy bunny. I take one capsule of magnesium glycinate before bed. Perhaps I should take two? I have not had my potassium levels checked or magnesium - I have absorbers I should take folate?
Magnesium serum tests are not ideal to diagnose deficiency as so little magnesium is in the blood. Unfortunately, RBC, WBC and whole blood magnesium tests are also not ideal. AFAIK the most reliable way to test magnesium is a "magnesium load test" or an "MG2+" test.
Although a severe potassium deficiency can show in blood potassium tests, a urinary potassium test is better to indicate if you're getting and absorbing sufficient potassium.
Once you are a week or two into treatment I would check folate levels to see whether you might need to supplement that too. Folate can initially be high due to folate trap but these folates will then start getting used once the B12 deficiency resolves. This isnt a problem if you have adequate folate in your diet and do not have absorption issues impacting how much folate you're absorbing.
You can check how much folate you get in a typical day using an app like Cronometer.
If you dont have adequate daily folate intake and/or an absorption issue affecting folate you will likely need to supplement. An RDA folate supplement is 200mcg folic acid per day. Many take 400mcg folic acid daily, a dose recommended for women of childbearing age.
My personal opinion (I am not medically trained) is take a look on your labs after 2 weeks of treatment and see if your folate is in the right spot, then take action based on that rather than supplement it blindly. High doses up to 5mg may be prescribed in the event of a deficiency but you would likely have heard about that by now from your doctor if that was the case.
We sound so similar! My sleep has been horrible as well for the past 2 years or so. I fall asleep very easily and then I’m up by 1am or so and rarely fall back asleep. I thought that was what was making me tired all day! I’m sure it contributed to it along with the B12 deficiency. I also have a stressful job so blamed it on that as well.
I have had 2 endoscopies this year because I was told pernicious anemia causes gastritis. Both have come back completely normal with no autoimmune gastritis. I lost my appetite at first due to feeling stressed over all of this including having to get an iron infusion. I was always so healthy before - rarely caught a cold and still haven’t caught the C19 virus. I have switched to gluten free even though I’m not celiac because I’ve heard it helps with thyroid, etc. I actually feel quite well on my injections and my husband does them for me (the nurse at my doctor’s office taught him). There are a number of places where you can order online - please let me know if you want the info!
Are we able to private message on here? I know exactly how you’re feeling right now!
Hello - sorry to hear you are feeling so unwell, but great news that you have some formal diagnoses and a treatment plan from your doctor. Lack of sleep is utterly debilitating, I had periods of time with a similar sleep situation to you in my late 30s / early 40s (I was also perimenopausal then).
For me, I think my body’s ability to deal with stimulants changed quite drastically (either because of hormones or B12 deficiency) in my 30s. I became very sensitive to alcohol in my 30s, and I would get burning patches around my eyes and around my chin line if I drank alcohol, so I had to pretty much cut it out. As well as alcohol making me wake in the early hours and being unable to get back to sleep, I found that caffeine disrupted my sleep much more, and sugar, and artificial sweeteners (like phenylalanine in diet fizzy drinks). I tried to reduce it all down significantly. I found if I had multiple drinks with caffeine in (at whatever time, even morning) then I would struggle to sleep.
I know that not everyone has these issues, or would respond to cutting back, but you might find it helps you.
Alcohol is a fairly common thing to have with meals or in the evening, but if you can cut it out completely it might make a massive difference, as would cutting out (or limiting to just one cup first thing) caffeine (ie tea, coffee, hot chocolate, colas, chocolate bars etc). Plus sugar and phenylalanine (in diet drinks) if possible.
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