Stopped injections due to covid .. are these results okay?

[Rich2489]

Hi, First post here. Was diagnosed with PA 2 years ago (28 year old male at the time) had loading doses and then further injections every 10 weeks.

This was stopped due to covid then said i don't even have PA so won't restart them even though im getting a lot of symptoms back e.g tingling in hands, sleeping all the time, confusion and depression.

I haven't been able to get through or too our doctors since and there having problems apparently.

So i took a PA test with super drug doctors and my results are saying normal:

The B12 level in the sample you provided is normal at 84 pmol/L

Your intrinsic factor antibodies (IFA) are negative (no antibodies present).

The folate level in the sample you provided is normal at 4.5 ug/L.

Does these results look okay to you guys as I'm not to sure, Thanks for any help, Rich

[wedgewood]

As you have a diagnosis of Pernicious Anaemia, you must have injections of B12 for LIFE . You need them often enough to keep symptoms at bay . You can have P.A. even if antibodies to the intrinsic factor are not present . You must get your injections reinstated .ASAP Can your doctor not find the evidence for your original diagnosis ? . After a diagnosis of P.A, and subsequent B12 injections ,your B12 reading will be high and must stay high . If you don’t succeed , I can only suggest self -injections . That’s what I had to do when I couldn’t get injections often enough to keep symptoms from returning . Best wishes .

[fbirder]

Write to your GP.

Explain that your diagnosis of PA means you need injections for life and that you are concerned that the tingling in your hands is caused by nerve damage and that it will get worse.

I'm surprised your B12 of 84 pmol/L was described as 'normal'. Was this an 'active' B12 test?

[Nackapan in reply to fbirder]

Missed this ! Sorry

[Rich2489 in reply to fbirder]

Thanks for the reply, Yes it was an active B12 test

[fbirder in reply to Rich2489]

In that case it definitely normal.

[Nackapan]

Even without a diagnosis of PA . If injections keep your symptoms away you obviously cant absorb b12 from your food. You have a diagnosis . It should be on tour notes.

If you are not a vegan then it is not dietary and you should have b12 injections reinstated before damage is done. Injections as awedgewood says are for life.

Write to your doctor copy in practice manager and local mp

If you look through topics there is lots of advice .

P A society could help you too.

Please do not allow this negligence make you ill.

Your blood results dont give ranges ?

Ask superdrug for ranges as they look low .

Letters can not be ignored . They are scanned onto your notes.

State your ongoing symptoms

State the guidelines of treatment

State you do not want irreversible damage to tour nervous system.

I hope you get this resolved very soon.

[Rich2489 in reply to Nackapan]

Thanks for the reply, It doesn't say the ranges in the test results but checking super drugs website says anything under 200ng/l is considered low

[Rich2489]

That's the issue .. the original doctor said i had PA so injections for life ... gave leaflets, google info, told 12 weekly injections ... I got my medical records last week and it doesn't mention anything about PA just low b12 but still having symptoms without injection

[Nackapan in reply to Rich2489]

Often the case. Told by a doctor PA as most common cause of b12 deficiency . Treatment the same so often just assumed pA .

Do you have access to blood test results to see if IFA test done? Even if it was a negative result does not rule out PA . Thars why so many Gps don't do it . It should go by symptoms and response to b12 treatment

It wasnt done for me at the crucial time before I jections were started .

I was told verbally most probable cause PA and Injections for life. I was also told by same practice another doctor it was dietary??

However I'm on b12 injections for life. I get very ill without them. I'm not cured with them yet.

With no definitive test for PA clinical judgement is needed. You have ' proof of the pudding'

PA diagnosis or no PA diagnosis you cant absorb b12 so need your Injections

[ValentinoBlue]

What is their range?? I thought below 120 was low

[Nackapan in reply to ValentinoBlue]

Different labs uses different measurements and ranges vary too. The range should be in brackets on the right

For example

Mine was 106pg/mL( 200-914.0) it should be written like that on results.

[Hidden]

Hello, look, you're a young bloke, you have symptoms of low B12, you’ve been on injections, they’ve stopped, you’ve got symptoms back. PA is like getting a puppy, it’s not just for Christmas, you are going to need B12 injections for the rest of your life. The way I look at it is you have 2 options, 1. You can go and fight with your GP, you can write letters, you can give yourself a load of stress and aggro and after all of that still be at the whim of the next numpty GP who has no knowledge of PA who can decide to stop your injections again, or 2. You can buy B12 online and do the injections yourself. It’s easy, 1000’s of people do it, you can’t OD on it and you can have an injection as often as you like without having to take time out to go to the surgery. OK I lied No 3. Do both that way you have a supply of B12 from your GP and as that probably won't be enough you can supplement with your own supply. Take it from an old bloke B12 is best taken care of by YOU. right I’m off for my weekly shot! Good luck.

[Cherylclaire Forum Support]

Your B12 result looks like an active B12 result (from HoloTC test)- and not a total serum test, measuring both active and inactive B12, which is the usual initial testing method.

Generally speaking, a result for serum b12 would be expected to be considered deficient at below 200ng/L (or 148 pmol/L), so you can see why it is difficult to interpret the findings- as 84 pmol/L from this test would be very low.

Please check the test and range given.

I would not call folate at 4.5 ug/L "normal" - that would be just out of range where I am (range: 4.6 - 18.7 ug/L). I got a 3-month folate course with a folate reading of 5.5 - to stop my hair falling out and gums bleeding in spite of B12 injections. It will take time to get this back to a healthy level and stabilise there.

But your B12 deficiency must be addressed first.

If you did have PA, you will always have PA. There is no cure. The B12 injections are a lifelong means of keeping symptoms at bay, so need to be given at a frequency that will help you to manage your symptoms.

Ask your GP how it was decided that you do not have PA. If the IFab (Intrinsic Factor antibody) test was used, it is positive in only 40-60% of cases, so low sensitivity and crucially does not rule out PA. A positive result however is 95% accurate- and so you would need to check back to see if this was the case previously - let's hope so. Ask for a printout.

Always keep copies of test results.

Then on to the folate - and get ferritin, vitamin D and thyroid checked as well. These are the most likely to also be affected when B12 is low.

All this will take time to heal, but make a start now. Neurological B12 deficiency symptoms should not be left - whether PA-diagnosed or not. Have you seen a neurologist yet ?

[Cherylclaire Forum Support]

.....Just looked up "Active B12 range": found 118-701 pmol/L .

So either way, active or total, can find nothing normal in your 84 pmol/L result, Rich.

Have a Google.