I've been looking at the last lot of blood tests that my doctor did and was wondering if the serum ferritin level is low or ok. I had the blood tests a couple of months ago and have had no feedback from the doctor at all.On the NHS app for some things it seems to show where your level sits against the normal range but it doesn't show anything against serum ferritin for me. The level is 22ug/l can anyone tell me if this is normal, low etc.
The other thing that is consistently above normal range on all the tests I've had done is "red blood cell distribution width", so am I correct in interpreting this to mean I have enlarged red blood cells? If so, is this is an indication of PA?
I've been having injections every three months for just over a year, but as I've mentioned in other threads I'm pretty sure that the frequency needs to be increased. I'm finding benefits for about a month after each injection but then it's wearing off. Next injection on Tuesday, I feel absolutely desperate for it to be honest.
I've had lots of sets of blood tests over the last couple of years but generally the doctor doesn't seem to give me any feedback, so I'm left guessing. But then she gets a set of tests done again and again, I'm confused as to what is going on to be honest.
I'm waiting for a referral to the neurovascular clinic, which says I should hear by the 5th August which is Monday. I'm pretty sure she's convinced the B12 deficiency isn't causing my neurological problems.
I've ordered some B12 vials yesterday, you can't get an appointment sooner than in 6 weeks time at my GP, I'm sure most are the same, and I'm pretty sure it would be futile anyway so I've decided to take things into my own hands like many here.
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I've asked about having the injections more frequently, but my GP said the level of B12 is so high that increasing wont see any benefits, this is despite saying that I'm seeing improvement for a month or so and then symptoms getting worse again.
She said it must be something else, she referred me to the neurovascular clinic, because my brain MRI showed areas of the brain that have been deprived of oxygen. I guess I have to wait for the neurology appointment and see what they say, I guess the GP might want their input before she changes anything.
My main symptoms generally are
Extreme fatigue
Breathlessness
Numbness, pins and needles burning sensations and pain in arms legs hands and feet
Blurred vision esp when tired
Problems with both constipation and diarrhea
Aching muscles and joints
Really excessive sweating (I've been given oxybutinin for this which seems to help to a limited extent)
Embarrassing but bedwetting sometimes not for a couple of weeks, then twice in a week
I don't really know if all or some of these are a result of the B12 deficiency, but doctor so far seems convinced they're not.
I take multivitamins with iron, are these likely good enough to help with the iron? Or do I need something better?
The once per 3 month guideline seems to have been based on some bogus math related to people who do not have PA. There was a recent post here that talked about how that guideline came about. I think most people with PA need them more often. It is good you are taking things into your own hands. Lack of B12 can result in permanent damage to things like your nerves and your spinal chord. Your doctor seems to not know that it is not recommended to retest B12 levels once you start injections? I hope you find a schedule soon that keeps your symptoms completely at bay.
I recognise your profile. Your ferritin is very low. Recommended ferritin levels for PA people range from 50 to 100 but ferritin indicates iron store levels so your iron will be low which means you need to take heme iron (the most effective form that does not upset the gut and is easily assimilated) which, with increased B12 intake (suggest self injecting EOD until you feel you can decrease the frequency) will help you make good blood. It sounds, too, as if you have a raised MCV which can be indicative of B12D. I had unactioned raised MCV five years before a blood test showed acute B12D. It is possible to have ferritin deficiency without anaemia. This is not detectable by standard blood tests. Which is why anaemia symptoms are sometimes not taken seriously by doctors. Another case of blood tests taking precedence over symptoms!
I think one of the problems is that no importance is attached to the length of time the deficiency has been active, including B12, ferritin and iron, folate. The body has to repair and that takes time and, in my view, more intensive treatment for an undefinable length of time, depending on the individual.
The RDW doesn't mean you have big red cells; it simply indicates that you have a wider range in red cell size. It could be you've got smaller ones as well as normal sized ones. The MCV tells you if they're bigger or smaller. RDW is a useful indicator of what's going on. Neither is it an indicator of PA, as it can be raised in no end of things. The FBC results are a good indicator of overall blood health, but they're not infallible. If you care to post your full FBC results it might folks to help you.
I have had a very similar experience to you. A few years back my bloodwork showed large red blood cells and when I asked about that at my next appointment I was told there were no other signs of anemia so nothing done.
This past April I asked to have my ferritin level checked as it has never been checked (I was diagnosed with PA in 2018). It came back as 22. After that batch of bloods, I did receive a call to speak to the nurse about my cholesterol level (which was very surprising because I eat really well) but ferritin was never mentioned. I spoke to the nurse about the low ferritin level and she said I could just start taking it, so I did.
In the end, I decided to order everything to begin injecting myself, which I have done, but my husband made me promise to tell the doctor before I begin. I did that two weeks ago and burst into tears because I am just so fed up. I happened to mention the low ferritin and that is when I was told, well actually, it should be at least 50. What?! I was asked to please hold off on self injecting because they want to be sure nothing else is missed.
So then I was prescribed Spatone and told to have my lipids and ferritin check again in six weeks. I’ve been taking iron now for eight weeks and honestly feel a tiny bit better but my injection is due this week also. I get them every eight weeks but my body tells me it should be every four weeks.
I’ve decided to stick it out until the next set of bloodwork in a month and a long talk with my doctor to discuss before I inject for the first time, if in fact, I have to.
Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice.
b12d.org/book
Keep a symptoms diary. I strongly advocate self-injecting. I am a Qualified Midwife who was taught nothing about the disease. I have the illness myself. Went on and gained further qualifications including a course by Ms T Witty. I am quite happy to pay for my Education. Often other Clinicians ask whether I would go back.
We have a bit of banter, No, I managed to escape. Why on Earth would I do a silly thing like that ? Not many of the community understand the challenges of working for the NHS. I can liken it to Fire Fighting.
What does she suppose is the cause of your neurological problems ?
If she thought that your neurological problems were related to your B12 deficiency, she would be advised (medical guidance : NICE) to ensure you get B12 injections every other day (EOD) until no more improvement can be gained at that frequency. Nerve repair can take a long time, depending on severity and longevity of damage. If left untreated or undertreated, it is possible to have only partial return/ irreversible damage. This explains, I believe, the wording regarding length of treatment at this frequency.
I was given 6 months of injections twice a week -then injections were reduced to 1 a month. Although this probably seems, by comparison to many here, very generous, it did not work for me. I had a diagnosis of functional B12 deficiency - flawed transport of B12 to cells and tissues - and so could not make best use of one maintenance injection a month, however generous this might seem.
Ferritin levels: ranges no doubt differ. My ferritin was in the 30s/40s (low within range) - my GP told me that below 60 ug/L, symptoms can occur. Later an Oral Medicine consultant treating my angular cheilitis and burning tongue wanted it to be 80 ug/L or above. So after managing to keep it in 50s and 60s, I had to try to get it above 80 which was quite hard work.
Even now, my folate and ferritin can be erratic and could do with regular monitoring. When my GP left the practice, and no-one else was doing this, my Oral Medicine consultant took over the watch. Last done in February, my ferritin was back down to 39 (whoops) and folate at 9.5 (could do better). If possible, ensure regular testing includes vitamin D and thyroid.
Once B12 injections have started, there is no point in testing serum total B12. In my case, my GP could see that the usual regime (6 loading, then 1 every 3 months) was not stopping deterioration and in her search for a cause, tested both my serum B12 and my MMA. It showed B12 as being high in the bloodstream, which one would expect, but raised MMA, which one wouldn't. Having eliminated other causes (SIBO, renal problems) - I was diagnosed as having functional B12 deficiency and restarted on the frequency above.
Despite continuing to have frequent injections, now by self injection, my MMA (methylmalonic acid) remained raised and took three years to finally drop into range.
I wish you luck with your neurologist. Mine was kind, willing to listen and provided tissues, but said that he did not know much about B12. This truly surprised me, as you would imagine that neurologists would be more than aware of the effects of too little B12. He sent me for nerve tests and brain MRI scan. No evidence of large nerve damage, no evidence of any problem with brain (that part was a surprise to me, too !) A relief though.
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