Blood results

[Kayls32]

could someone look at my results please, I’m not sure where to go from this. These were from Oct 24 when I was prescribed folic acid 5mg for a month. But if anything my symptoms are worse now.

[Nackapan]

Havd you had any B12 injections yet ?I think I can make out your serum b12 is only just in range.

And your ferritin looks low .

Was vitamin D tested?

All you csn do is go back and question these results and list your symptoms .

Keep a diary .

Iron has to be monitored if needed to up your ferritin level .

Was a IFAB test done ?

Is your diet mixed including diary ,meat ?

Are you on any meds that could restrict absorbtion?

Have you any other medical conditions.?

Hope you get sone answers as looks like an absorbtion problem if you are eating a mixed diet .

Tea / caffeine csn restrict iron absorbtion.

Vit c enhanced it .

Alcohol impedes absorbtion of some nutrients too.

You mat be aware of all this.

Hope you find answers and get appropriate treatment and a follow up blood test and review .

[Kayls32 in reply to Nackapan]

Thanks for responding.

I haven’t received any injections, these results are from October 24 I have only just managed to get a copy of them. I was prescribed a months worth of 5mg folic acid following these results. I have a gp appointment tomorrow as my symptoms are getting worse. To answer your questions, ferritin hasn’t been mentioned at all, Vitamin D was tested last year and was 25 so I am following a protocol for that. IFAB was tested January 24 which was negative, my b12 was 359 then. Diet is pretty good, includes meat & dairy most days. I am on Lansoprazole and have been for years which I know can be an issue with b12. Will see what the GP suggest tomorrow. But I just keep being told everything is normal and b12 is in range.

[Nackapan in reply to Kayls32]

Point out 5 worst symptoms. B12 dropped since last test .

Vit D low was my first warning an absorbtion problem.

Get a second option or specialist referral if no reasons found.

IFAB

Point pug about 50% of those with PA test negative .

Ask fot s trial of b12 ??

[Cherylclaire Forum Support]

Ferritin: 16 ug/L (range: 13-250)

When my B12 was 196 ng/L, I was given B12 injections as the range was 197- 771. When my symptoms continued to worsen, I was also given 3 months' supplements for folate and ferritin - which were both on the low end. My GP attributed the hair loss and bleeding gums in particular to one or other of these.

My folate was never lower than the initial 5.5 result, ferritin was never lower than mid 30s, but both continued to be very up and down for a couple of years and still need monitoring.

My GP wanted my ferritin kept above 60 to avoid symptoms, later my Oral Medicine consultant preferred to see it above 80. Can be hard work to get it there.

Nackapan has given good advice about what else you could ask for - since B12 is on the low end of the range, and could be a decline (?), if symptoms fit with a B12 deficiency, but serum test for it is borderline, you might also want to ask for an MMA test. A high result for this could be an indication of B12 deficiency.

Low folate and ferritin could also encourage a GP to look further into possible B12 deficiency.

[Kayls32 in reply to Cherylclaire]

Hi thanks for that. Had my appointment today. I have been given loading doses of b12 over the next 2 weeks. Then 1 every 3 month if I feel a difference from the loading doses. Also given 5mg folic for 2 months. She told me I don’t need iron and that it more than enough for the injections. I’m not deficient.

I had to fight to get the trial of injections as she told me my level of b12 wouldn’t give me any symptoms because it’s in the normal bracket. Just a bit worried now that the b12 won’t help if my ferritin isn’t high enough.

I have my first appointment on Monday for bloods and first injection.

[Cherylclaire Forum Support in reply to Kayls32]

Keep a record of when you have your injections and how that affects your symptoms. Also, in case the positive results from injection diminishes before the next injection is due, once on your maintenance regime. This is something that cannot be measured medically and won't show up in a blood test. Only some symptoms are visible ones.

You might not need this as you might find that an injection every three months works well for you. But it is as well to have a record for "just in case" that starts from initial treatment.

Also useful that you have the readings from blood tests. Wonder what they are now checking before your first injection ? Maybe Intrinsic Factor antibody (IFab) again ? (I've had three negative results.)

I still think your ferritin way too low and vitamin D too. You have probably noticed that many here have problems with low folate, ferritin, vitamin D alongside vitamin B12 deficiency. I have vitamin D on prescription, as I was found to have osteoporosis of the spine.

Wishing you well and hope that your loading dose makes a difference !

[Kayls32 in reply to Cherylclaire]

Thanks for that, will try to keep a record of symptoms. I asked the nurse what the blood test was checking and she said B12, Iron, Folate and also MMA serum test. She actually said she had never heard of that one it was a first for her.

It was actually me that mentioned it to the GP at my appointment and she didn’t know about it either. So hopefully that means she had went and done some research.

I have been supplementing vitamin D, and trying to up my iron levels but really struggling with the side effects of the iron tablets, I have never really been able to take them.

[Cherylclaire Forum Support in reply to Kayls32]

My GP had my MMA tested. Not easy to get that tested - she had to try three times before finding a hospital laboratory that would be able to do that. This was because I was unresponsive to loading B12 injections and deteriorated on 3-monthly. My MMA was found to be raised.

It remained raised for three years, despite frequent B12 injections given. It was on the 6th test that it was found to be back into range. By this stage I was self injecting every other day, trying to get symptoms under control and return to work.

So this can be a useful test if your GP can get a hospital to do it. The 5 tests that followed were all done from secondary care : Haematologists, then Adult Inherited Metabolic Diseases consultants.

[Kayls32 in reply to Cherylclaire]

The nurse did say the lab might reject it, I have just realised she took the bloods for testing after she had given me the b12 injection. I didn’t even think about it at the time because I was so nervous about the injection. So would that mean if the MMA test has been done it wouldn’t be accurate?

I have ordered my own supplies to SI every other day, as I don’t think what they are offering me will be enough based on my neurological symptoms. Bit anxious about it but will get there hopefully

[Cherylclaire Forum Support in reply to Kayls32]

Well, I would say that, in my case, it took three years of frequent B12 injections to make a difference, but I can see what you mean.

Once, when I was very new to all this, on realising that the B12 injections were not controlling my symptoms, I booked a GP appointment. A locum GP had me have a B12 injection, then sent me to the local hospital to check my serum B12 level. I did think to question this - but she told me that it would make no difference and I believed her. Naturally, by the time my bloods were taken, I got a result of >2000 ng/L, which meant that I would not get any help with my problem - and this would stay on my record forever without a mention of the reason behind it.

If directly after the injection, there might not be a problem.

Keep your supplies at hand as back-up, and see what they give you. Keep anxiety at bay by looking at this as a standby action. A Plan B. Many people here have felt the same. No-one likes having to do it, I'm sure, but it is a matter of having to, and will eventually become second nature ... IF you need to resort to self injecting. Not a given yet.

Good luck.

[Kayls32 in reply to Cherylclaire]

Thank you. Unfortunately when I had my 2nd injection today I asked if my bloods were back and I was told yes, b12 was over 2000. Was quite disappointed as I had wanted to know if my levels had dropped from October.. I think the MMA takes a bit longer to come back but not sure, but it wasn’t mentioned.

Long road ahead regardless, but I do feel I’m getting somewhere for now at least.

[Cherylclaire Forum Support in reply to Kayls32]

For each of my MMA tests, my own B12 would have been over 2000 ng/L. This made no impression on my raised MMA for three years. I say "would have been" as my GP stopped monitoring my B12 after ensuring I had 2 injections a week - as being "pointless" . Exactly. No need.

The folate, ferritin and vitamin D she continued to check as folate and ferritin blippy for a couple of years, and even now can be a temporary problem. Vitamin D on prescription due to osteoporosis of spine.

[Kayls32 in reply to Cherylclaire]

Unfortunately my Gp has stopped my loading doses, as I said previously the nurse gave me my b12 injection and then took bloods so my b12 has came back as over 2000. I explained this to the GP but she has said that it wouldn’t be in my system by then.

So now been told to go back in a month to test the level. I told her i have already had 2 injections though so level might still be high. But she wouldn’t budge.

Asked her to explain how my level could jump from 224 in October to now over 2000, she said I could have been eating a diet rich in b12. It’s actually scary how little knowledge the so called experts have .

[Kayls32]

ah okay that makes sense. Well hopefully I will get a result. Although I don’t think my GP will be doing any more tests so I will be back to square one if it doesnt come back showing anything.

Hopefully they don’t want to test b12 after loading doses.