Reoccurring symptoms - is this “normal” ?

[Ctadds1]

I have been receiving injections for a year now. Progress has been made but I still get some very bad days. I had loading doses and then monthly injections which was not nearly enough. Right now I inject about once a week. Some days I feel good and then I hit stretches of days when I feel awful. I am currently in one of those stretches. So very tired, weak muscles, episodes where I am so short of breath, dizzy drunk feeling. Is it “normal” to experience these things even a year after starting treatment? Do others also experience this?

[Sammyo23]

Have you tried injecting more than once a week? Maybe you need more.

[Ctadds1 in reply to Sammyo23]

I’ve thought about it. I went from one a month to twice a month to every week. It just seems like so much but it may be necessary

[Sammyo23 in reply to Ctadds1]

Stress is another major factor. It's known to deplete b12 faster.

[Nackapan]

Yes unfortunately I. 3 steps forward two back. Keep having bloods to check iron ect.

I seem to progress to a certain point but then cant maintain it or get further.

I had injections 2 weekly for a year tgdn started more frequently

I count injection day as day 1 then realised after 2 yesrs it shoujx be zero .

So have consistently injecting every 6th day say Saturday then Thursday.

So it's every 5 days for the last yesr.

Keep going it does pay off

[Lunario]

I agree with Nackapan, it's a bit forth and back before it eventually gets better, but once a week might be not enough for you. Since my diagnosis in 2019, I tried different frequencies and now inject every other day.

Besides other hints (like iron, which is very important!) - what about your thyroid? Could you rule out Hashimoto's disease? Some symptoms overlap with PA, muscle weakness is one of them. And many people with PA do also have to struggle with Hashimoto.

[Ctadds1 in reply to Lunario]

Doesn’t seem to be anything going on with thyroid. I did have within normal range but low ferritin, B1, and D. I have started supplementing those as well. I should try injecting more frequently but it scares me. I do not have diagnosed PA. Negative for intrinsic factor antibodies. Just low B12 (140) at time of diagnosis. Numbers are sky high right now due to injections.

[Lunario in reply to Ctadds1]

My B12 reading is way over the range, like many others who receive injections have high B12 readings too.

After my first self administered injections I had to lay down for a while because I was close to swooning. You'll get used to it, just think about how brave you will feel.

For subcutaneous injections I can recommend these extra fine needles (edited: they are pretty short, so I don't find them very scary).

Product image (injection cannulas)

[Lunario in reply to Ctadds1]

Good thing about self-injecting is that you have control about how fast you bring it in. That helps to reduce the slightly stinging.

[waveylines]

You need more frequent injections. You have heurological symptoms so shuodo have injections every other day according to the guidelines. Ive ended up injecting twoce daily to keep on an even keel. Its what works that counts.

[Sammyo23 in reply to waveylines]

What times did you inject when you did it twice daily?

[gbcrewmom in reply to waveylines]

Where can I find the guidelines that you mention?

[Lunario in reply to gbcrewmom]

I think this is the link. It works only if you are in the U.K. I can't check this right now because I'm in Germany and I would need a VPN tunnel for accessing it.

cks.nice.org.uk/anaemia-b12...

[waveylines]

I still am injecting twice daily. Roughly about 12 hrs apart.

[2561]

Iv'e injected 3 years now. Dr's missed the loading doses, as PA isn't known to all. Oncoligist had me continue with 5000mcg under the tongue, when I run out before next shot. Can be purchased in liquid or disolving tablets.

[Ctadds1 in reply to 2561]

How have you progressed over 3 years. Do you continue to experience symptoms?

[2561 in reply to Ctadds1]

Just fine I guess. I can tell you the exact day & hour if I run out of b12. It's like i hit an instant tired brick wall. That's when I supplement with sublingual.

[JCKKESC]

You mention having low ferritin, when I had low ferritin (count of 19) I had palpitations, hangover/drunk feeling, weak & extreme exhaustion, hair loss. Optimal ferritin is 100+ anything below can cause major issues such as above. Worth checking out as iron deficiency and B12 can come together.

[Ctadds1 in reply to JCKKESC]

Mine was a 41 (standard range 8-242). Can I ask do you supplement with Iron and how much? I do but with only about 15mg a day because I’m afraid to take too much.