Should I push for diagnosis?

[Sunshine78]

Hi all, spoke to my doctor today after being told about low B12 levels (120) over the phone last week. He seems fairly relaxed about things. Apparently intrinsic factor was negative so he says not PA, maybe a fault in the IF (??). No idea what this means. 

Anyway, loading injections start on Thursday (alternate days for 2 weeks then 3 monthly). He says no need to refer to haematology unless B12 levels don't go up after injections. 

I'm keen to keep him on side and wondering if I should push for further diagnosis or just settle that I'm one of those people (as Martyn Hooper mentions in his book) left in no mans land of being treated for life but not diagnosed as having PA! 

I've already taken a private test for active B12 (awaiting results) but my doctor he never heard of it and it won't change treatment plan anyway I guess.

Any thoughts? 

[SoylentDave]

Personally, I'd see how you go. Getting treated properly is probably more important than getting the correct label on your diagnosis. 

(persuading your doctor that the IF test gives false positives & false negatives, and isn't regarded as particularly useful by the BCSH is probably more trouble than its worth, unless you *have* to)

If the loading dose and three monthly injections treat your symptoms, then you're sorted. 

If you get symptoms returning before the three months, however, then you'll need to push your GP (and it might be easier if he isn't already all defensive). 

Remember that if you get any neurological symptoms (pins & needles, numbness, confusion etc.) then the NICE guidelines recommend 'urgent' referral to a haematologist AND treatment every TWO months in the interim (you may need to point this out to your doctor - it's in his BNF, and you can find the NICE guidelines online). 

[Sunshine78 in reply to SoylentDave]

Thanks SoylentDave. I do have neurological symptoms (I went to docs for ringing in my ears and worsening peripheral pain and tingling amongst other things) which is why he checked my FBC & B12. He agreed that I have neurological symptoms but I guess I don't want to burn my bridges...Like you say I might need them if I need more frequent injections down the line. I've always found him good before so I don't doubt that if I'm struggling he would increase frequency, at that point I would refer to BCSH guidelines to back up my request. 

At this point I'm wondering what will be gained from seeing a haematologist - are they going to be able to do any more/find anything further out at this stage? 

[SoylentDave in reply to Sunshine78]

At this stage, I don't *think* so - it's something to keep in your back pocket in case you need it (i.e. if you need more frequent injections than your GP is willing to provide), I think. 

(but I haven't seen one myself yet; I've been referred but my appointment isn't until mid-May, so perhaps I'll be more enlightened about what they can achieve afterwards!)

[Jose651]

Hi Sunshine78

Do you know what your Folate levels are? Post any results with ranges in brackets and member can comment if you need to supplement. 

Ferittin, Folate and Vit D levels should be optimal to allow B12 to do it's job efficiently.

My B12 was exactly the same (120) when I was diagnosed last year. My Vit D was also very low.

J

[Sunshine78 in reply to Jose651]

Sure, the levels I know are as follows:

Vit D 27 (50 - 200) 

Iron 25.2 (6.6 - 26) 

TIBC 70 (41 - 77)

Transferrin Saturation 36 (20 - 55) 

Free Thyroxine 13.4 (12 - 22)

Did you get a PA diagnoses? Any ideas why your Vit D was low too? 

[Jose651]

When were these blood done?  Are they recent? 

I do hope your GP has given you a script for Vit D.

Have you got a Folate  and Ferittin result?

You would benefit from joining TUK within Health unlocked and post all your Thyroid results with ranges to get help.

I am on Injections for life on NHS.  Diagnoses for PA isn't important to me at the moment, as the treatment is the same. 

I self inject with Different types of B12 and take Adensylocobalamin under the tongue when I feel I need it.

Read and learn and ask all the questions you need to Sunshine78

I have an Underactive thyroid for 30 years.  B12 def/PA  and low Vit D are very common in people with Thyroid disease.

J

[Sunshine78]

I will def find them out from the GP tomorrow & post Thyroid results on the other board too. Thanks so much J. Appreciate your response. 

Aside from the B12, the other results I got done privately. I don't think it's worth the hassle of a prescription for the Vit D, probably cheaper to buy it anyway once I've paid for the script. Any thoughts on the best supplement for this? Rachel 

[Jose651 in reply to Sunshine78]

You are welcome R.

Ask for a print out of all bloods done, you are entitled to them. They are very useful to refer back to. 

I don't pay for my scripts as I take hormone replacement for  UAT...Under Active Thyroid. 

We will wait and see your results. You should be offered a high dose of Vit D from your GP. Take it for the moment to get your levels up.

I will certainly tell you what I am taking when I get up in the morning.

Lol

J

Ps, when you want to reply to someone, click on the small reply button under their reply. That way, an alert comes on to let them know what's  happening.

[Gambit62 Administrator]

Personally I wouldn't bother pushing for a diagnosis as to why you are B12D.  There are several possibilities in terms of absorption problems and it makes no difference to the treatment.

Add to this that the IFA and PCA tests aren at best 50% accurate I'm inclined to think you could drive yourself mad trying to get to the bottom of why ... and even if you test positive for one that doesn't rule out low stomache acid.  Better to concerntrate on making sure you get the treatment you need.

Treatment should really be based on symptoms  rather than test results from now on.

[sweetnessandlight]

Personally I found haematologist absolutely useless. Said my symptoms couldn't be b12 related as I am on 3 monthly injections despite being neurological. I have found a neurologist more useful. He also thinks the same but at least is willing to do testing to find out.