Three months on injections...blood work still iffy

[Booksellercate]

In March-April I was going back and forth to the doctor with the following symptoms: lightheadedness/faintness, dizziness, weakness, joint pain, weak legs which kept buckling. The only abnormality on my blood tests were elevated MCV/MCH and a slightly higher count of nucleated red blood cells. I was tested for B12 deficiency. Originally I was told it was "good". At the April I found out that my B12 level was 243 and my folate elevated. After 2 injections at the doctor (they said that was all I needed) I started to self-inject B12 daily from end May. The doc ran another blood test earlier this month and I've just got the print off (attached to this post!). It looks like the macrocytosis which had first shown in March has increased slightly, as has the number of nucleated red blood cells. Should I not have expected a change in the other direction after 3 months of B12 injections?

I have had little to no improvement in my main symptoms.

I take 5mg folate daily, along with B12 complex, magnesium, potassium (food) and a few other goodies to help. I'm now taking 3 x Gentle iron pills a day and 2 x sachets Spatone to boost my ferritin levels (last tested at 42).

Am I missing something? Any thoughts?

Thank you!

[fbirder]

Yes, you do still have slight macrocytosis. Nucleated red blood cells are immature cells that are produced in large numbers when the body needs a quick surge in RBC production.

So I would say that your RBCs are recovering (do you know what your MCV was in March, before supplementation)?

It can take quite some time for the symptoms of a B12 deficiency to disappear, so I wouldn't worry too much just yet.

Why did your doctor believe that you only needed two injections? Had he identified the cause of your deficiency? Because a deficiency with no temporary cause really needs to be investigated further - with a view to lifetime treatment.

So I'd go back and ask for him to figure out why you were deficient. Have you been tested for anti-IF (Intrinsic Factor) antibodies? A positive result for that is a sure-fire indication of Pernicious Anaemia. (A negative result doesn't rule out PA as half of sufferers give a negative result.

Whoops! I've just seen the anti-IF negative at the top.

I'll bet that's why he thinks that just a couple of jabs are OK. Let him know that a negative result doesn't rule out PA. Download my summary doc - frankhollis.com/temp/Summar... - and the BCSH (British Committee on Standards in Haematology) document linked to therein. That's a proper, expert, argument for ignoring a negative anti-IF test and treating the symptoms.

I'd also cut back on the number of times you self-inject. Currently it's likely that most of the (expensive) B122 you're injecting is going straight down the loo). Keep a diary of your symptoms and when you jab yourself. Try going without for a month at first. Don't grab the syringe as soon as you feel rough - symptoms can come and go. But don't suffer unnecessarily. Find a frequency that keeps you feeling OK most of the time.

When you go back to the doc you'll have to tell him you've been self-injecting (otherwise he'll be worried by the high B12 levels). Tell him you'll stop if he treats you properly.

And I'd cut down on the folic acid. 800 ug a day should be plenty for most people.

Finally, your potassium level is low - right on the bottom of 'normal'. Your doc should infer from your results that the surge in RBC formation is depleting your potassium levels. You can boost them by eating potassium-rich foods (I like bananas) or by switching from ordinary salt to low sodium salt (available from Tesco and Sainsbury) which is 2/3 potassium chloride.

I think that's everything. I'm sure others will add anything I've missed.

[Booksellercate in reply to fbirder]

fbirder Thank you for taking the time to write such a detailed reply.

In March my MCV was 98.8, in April it was 95.3 so it has increased a little. Nucleated red blood cells in March registered at 0.02.

I was given just 2 injections (of an originally prescribed 5 loading dose) because my B12 levels were 243 and it was deemed that I was not deficient enough to need the full lot. I was unable to convince them otherwise at subsequent appointments.

No cause has been found. I have not officially been diagnosed with either B12 deficiency or PA. A GP knows I am self-injecting and is happy for me to continue. I am also waiting for a follow-up neurologist appointment - although I think this is a dead-end. I think I will be dispatched back to a GP and referred onto a haematologist. There is a GP who is aware of my situation and monitoring my potassium, ferritin and doing regular FBCs.

In 3 months I have had little improvement, I'm holding on and hoping that it will just take some time.

My symptoms are so severe I am housebound, unable to walk and work so I am reluctant to stop, truth be told. I couldn't walk to the end of the road!

I am struggling with potassium. I am intaking a good amount of potassium, around the RDA at least. Unfortunately one of my symptoms is frequent urination (it has improved a little) and I suspect I am struggling to hold onto the potassium. I have started to take dioralyte on the bad days.

[PAS-admin Partner in reply to Booksellercate]

I agree with fbirder's reply.

Besides low B12 or low folate there are some other causes of a high MCV. Hypothyroid is one of them. Has your thyroid been tested?

There are also some medications that can raise MCV, so if you take any, check the leaflets if it can raise MCV.

If you had almost no improvement in 3 months, have other things checked out.

[Booksellercate in reply to PAS-admin]

My thyroid was checked privately and was fine. I'm not on any medication.

My doc said there is little more he can test as a GP and is going to get outside help - I think in the form of another referral to either a haematologist or gastroenterologist.

I've read about other possible causes for macrocytosis, it doesn't make for a lighthearted read :/

[Gambit62 Administrator]

were you supplementing folic acid before the blood test in April. Sometimes folate is elevated where there is a methylation problem (MTHFR) - stays in the blood because it can't be used by the cells. In theory high doses of folic acid should work but perhaps that isn't always the case and may be a methylated form might suit you better .... but its a bit clutching at straws.

Agree that with fbirder and PAS-admin that the 5mg of folic acid should be much more than you need given that your levels are actually on the high side at the moment.

[Booksellercate in reply to Gambit62]

Hi,

I didn't supplement until just after I started injections in late May. I take a mixture of methylfolate and folic acid. I can't take high doses of folic acid as it makes me very nauseous. I managed to build up a tolerance to methylfolate. I currently take 4mg methylfolate and 1mg folic acid. I was advised in another group to take 5mg a day on daily injections. I continued with this as there is no risk with high folate levels as far as I am aware. I guess I see no harm in the high dose and some reported high doses of folic acid/folate contributed to their recovery.

Initially my B12 was low (243) and folate high so I have assumed it was trapped folate so essentially a functional folate deficiency.

I am a little bemused. My doctor does not seem overly concerned that the B12 injections haven't shifted the MCV in the other direction. I feel as if I might be missing a piece of the puzzle but not sure. My ferritin was less than optimal - 42 at last count-and now supplementing. I have had conflicting advice on whether this ferritin level could be slowing a full recovery. The only way to find out is to try I suppose.

[Gambit62 Administrator in reply to Booksellercate]

As I understand it ferritin is a something that is used by the body to bind iron so it can be used - low levels indicate that there isn't much iron in need of binding. Levels that are in range but low don't necessarily indicate a problem - as lots of people will be perfectly okay at this level. Your iron levels themselves look towards the middle of the range which implies that that side of things is okay

MCV is the volume of your blood cells - and the other results are pointing to the same thing - more in the blood cells - not necessarily because they are larger but possibly because they are rounder than normal - which makes them less efficient at absorbing and releasing oxygen quickly but doesn't mean that they are less efficient at carrying oxygen.

This article talks about macrocytic anaemia as being raised MCV with lowered haemoglobin

patient.info/doctor/macrocy...

Macrocytic anaemia describes a macrocytosis associated with a reduced haemoglobin and most commonly occurs as a result of a megaloblastic anaemia.

However, your blood results show high MCV and high haemoglobin. May be this is the reason why your GP isn't concerned. ie you have macrocytosis but not macrocytic anaemia.

Really don't know enough about it to be able to say that your GP shouldn't be concerned - just can't find anything suggesting that treatment is necessary if it isn't macrocytic anaemia.

[Booksellercate in reply to Gambit62]

Gambit62 -thank you as always for replying.

I know one thing-I feel dreadful and something is very wrong. I spend most of the day so lightheaded I feel as if I am going to pass out any moment. My legs are like jelly. I've been housebound since April. I've had quite a few tests and these are the only anomalies and low B12, hence believing that these results are linked to and somehow responsible for my symptoms. The results don't look too bad on paper but the impact is astonishing. I can't physically function. It's very strange.

My doctor is "seeking outside help" which I think involves a referral to a haematologist. I'll have to go with this, hope the B12 (if this is the issue) resolves itself or something else presents itself (hopefully something treatable!).

[Gambit62 Administrator in reply to Booksellercate]

Not trying to belittle your symptoms and it may be B12 and or folate/methylation problems but I think the implication would be that it the symptoms you have aren't the result of a classic anaemia/something that is actually happening in your blood, but down to the effect of B12/folate on another one of the bodies systems.

Good that your doctor is seeking outside help though not sure that a haematologist is necessarily going to get you any further as they are likely to be focused on the blood and not thinking about other possible systems that might be affected by deficiencies and processing problems.

[Booksellercate in reply to Gambit62]

Sorry if I have misunderstood your post-I'm a little tired and foggy-are you suggesting that there is the possibility the symptoms could be a result of B12 deficiency afeecting another system, for example the nervous system?

I agree - it's hard to know where to refer when there is no clear cut problem.

I'm wondering if the B12 is not being absorbed/processed/correctly utilised somehow.

[Gambit62 Administrator in reply to Booksellercate]

Sorry to not have been clear - yes - suggesting that it is down to affect on another system - nervous system would be one possibility - the processes for releasing energy in muscles would be another.

[ndodge]

Hi Booksellercate,

What type of b12 are you injecting? I was on Cyanocobalamin which did nothing for me. Did it once a month for a year. When I switched to methylcobalamin, I had immediate good results. I'm not saying it's better, all the forms are good but different forms seem to work differently for everyone. You might try a different form of B12.

Also, I agree with fbirder that perhaps you should cut back on the injections. Gambit62 has pointed out a number of times that some people develop antibodies to the B12! How unfair is that? On top of everything else... But I was having inconsistent results after injections and now inject 800mcgs instead of 1mg. It made a huge difference! I feel consistently better and it makes my tinnitus go away, at least for awhile.

I think I have that antibody problem and cutting down on the amount seems to do the trick. (A big thanks to Gambit62) I tried to go lower in the amount but it wasn't as effective as an 80% solution. Wish I could be like Sherlock and get down to a 7% solution, I Could save some money!

just some thoughts for you, you could experimentt with different doses and/forms of B12.

Good luck, my heart goes out to you, it must be so frustrating to not feel better by now! xx

[Booksellercate in reply to ndodge]

Hi ndodge ,

Thanks for responding!

I am actually alternating between hydroxocobalamin and methylcobalamin. I am willing to tweak and experiment with things.

The B12 antibodiestheory is an interesting one. I am just making notes on things to tweak and experiment with and I will add this to my notes. I guess it's a case of finding what works for you. May I ask how you measure 800mcg? Do you use a 1mg ampoule and dispose of the remaining 200mcg?

I think any significant improvement would be welcome-anything which lets me know I am on the right track. I am getting better at being patient..but it is the not knowing if I am doing the right thing which is the hardest to bear.

[ndodge in reply to Booksellercate]

I totally understand, booksellercate. It's not like one size fits all on this B12 thing!

I get a multi use bottle from the compounding pharmacy here in Portland Oregon. They said they could make up hydroxo which I am willing to try but I have to have a check in first with my naturopath as she writes the prescriptions.

It is 2mgs of B12 in one ml. of solution, so I was using 50 cc's in the syringe to get 1mg of B12. Now I use 40cc's which is really 80% of a full dose or 800 mcgs. There are 4 doses of 1mg per bottle, which means I get an extra dose out of a bottle which is good- the stuff is expensive! It costs me 22 U.S. dollars a bottle! Basically 22 a week or 88 dollars a month.

Really, the best of luck to you in finding the right dosage. I wish there were some way we could check measurements of our cellular absorption of B12 rather like diabetics test their blood for sugar...if only it were that simple! But my daughter has adult onset type 1.5 diabetes (got it when she was 33- yet another autoimmune disease in the family!) and it took her a couple of years to get the insulin doses right. I think B12 is more like that for folks and not the simple fix the doctors think it is.

Let me know how your experimenting goes! xx