I wonder if anyone could advise me - I'm rapidly losing all confidence in my GP - I took it upon myself to get some private blood tests done hoping they might throw up something, in case there was more going on with all my symptoms than the PA.
I was diagnosed with pernicious anaemia over 20 years ago (almost non-existent B12, high IF antibodies) and have received 3-monthly injections ever since. Things have got progressively worse this year after a bout of Hepatitis A in January - (extreme fatigue, neuropathy, brain-fog, palpitations, breathlessness, aches and pains, etc.) so I started a regime of SI back in August. First three weeks I had daily jabs, now reduced to EOD.
I've recently had various blood tests - haemoglobin and red cell count now improved (since July) and within normal range, thyroid function (Free T3 &4, TSH) and Vitamin D are fine, ferritin, folate, active B12 all OK, liver function tests now back to normal, although I have elevated Free Kappa Light Chains (24.97 mg/L - normal range 3.30 - 19.4 mg/L) but normal Kappa/Lambda Ratio at 1.27, slightly elevated IgG (16.2 g/L - though I suspect this may still be as a result of the Hep A), elevated MCH (33.2 pg) and low reticulocytes at 36 10*9/L (normal range 50-100 10*9/L).
I'm a bit worried about the reticulocyte count as I thought the frequent injections would have helped this - NICE state that it should improve within 7-10 days of beginning injections. I asked the GP whether the B12 injections would have improved my haemoglobin and RBC but she said not, which completely contradicts what I've read from the NICE guidelines!!
Initially my GP sent me to see a musculoskeletal specialist in October as she was convinced the neuropathy was linked to herniated discs in my back and neck (it isn't - he confirmed this). Now she suggests me seeing a gastroenterologist in case I have coeliac disease, which I haven't, confirmed by an endoscopy when I was originally diagnosed - I'd already told her this, but she seems to have ignored it. I asked about seeing a haematologist but she was quite dismissive.
I'm concerned about MGUS as I know people with PA have a high percentage risk of developing this, and also Myelodysplasia, which my dad had.
I feel as if I'm having to push for everything and feel fobbed off. I'm sure the GP just thinks I'm a hypochondriac! Feeling anxious and wondering if anyone can shed any light on the low reticulocytes and high Free Kappa Light Chains - has anyone else had experience of this?
So sorry for the massive brain dump here, but if anyone has knowledge/experience of any of this I'd be really grateful for some advice!
Thank you in advance🙏
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"low reticulocytes at 36 10*9/L (normal range 50-100 10*9/L)."
For others reading this thread, reticulocytes are immature red blood cells.
I searched online for "NHS low reticulocyte count" and found several relevant articles.
"Now she suggests me seeing a gastroenterologist in case I have coeliac disease, which I haven't, confirmed by an endoscopy when I was originally diagnosed "
If you were diagnosed with PA twenty years ago, I'm wondering if it's possible you could have developed coeliac disease over that period of time.
As I think a forum member once said ....autoimmune diseases hunt in packs so having PA increases the chances of developing coeliac disease and other autoimmune conditions.
Some forum members report benefits from going gluten free even if they don't have diagnosed coeliac disease. I think it's a good idea to get coeliac disease ruled out before going gluten free.
"I've recently had various blood tests "
Have you accessed all your blood test results?
I was told in past that things were fine and when I checked some of them weren't.
Have you compared recent results with older results to look for trends eg things increasing or decreasing over time?
This might be significant even if results are within normal range.
"thyroid function (Free T3 &4, TSH)"
Might be worth posting thyroid results on Thyroid UK forum on HU.
There are other thyroid tests your GP or a specialist could order.
Thank you so much for all this - I will have a proper look through at my leisure when I have more time tomorrow - very heavy day today! Will feed back to you, but in the meantime thank you for such a lot of very helpful information - it's greatly appreciated! 😊🙏
I suspect you do not have coeliac disease but want to point out that just because you did not have it 20 years ago when first diagnosed does not mean you do not have it now. "Healthcare providers most commonly see it appear during two distinct age windows: early childhood, between 8 and 12 months old, and mid-life, between the ages of 40 and 60." You seem to have a lot going on and that could involve a thorough investigation from your doctor. Best wishes in figuring out what is going on. It sounds like it could take some detective work.
Thanks so much for your reply - I doubt I have coeliac disease too, but may have the test just to confirm as much for the GP's records as my own! I didn't appreciate that there was an increase in the onset between 40 & 60, so thanks very much for that, it's definitely worth checking just in case. I'm just disheartened that I feel so wiped out and any tests that I am actually getting via the GP I feel I'm having to beg for. I pointed out that I should have been having the B12 two- and not three-monthly as I presented with neurological symptoms (as per NICE guidelines) right from the start. She made no apology for the fact this has been going on for over 20 years, just said I could probably have it 2-monthly if I wanted, and no comment on the fact that I've resorted to sourcing my own ampoules.
Thank you for your good wishes - I'll update if and when anything is confirmed! 😊👍
You don't tell us what your Hb was on the last test, and this may be significant. If your Hb is in YOUR normal range, more injections of B12 would not cause your Hb to rise further, because your body has a 'feedback loop' that stops this. When your Hb rises into the normal range for you, then your endogenous secretion of Erythropoietin [Epo] falls, so the Hb doesn't keep on going up. Of course, abuse of Epo would cause your Hb to rise further, but that would be a silly thing to do. It would however get your retic count to rise, because that's how it works. Viral infections are quite good at causing some suppression of red cell production, and this is seen with a fall in retic production.
As you've had a serious viral infection, it's probably best to avoid panic and carry on as normal. Then, when you're fully recovered, see how you are. The immunoglobulin situation is as you suggest; it might well be a post-viral picture.
Don't forget that 'reference ranges' are 95% intervals, so 95% of 'normals' are within the range, meaning 5% aren't. On the '50-100' range, that gives a standard deviation of 8.3; if we take a range of +/- 3SD, then the range widens to 42-58 and that catches 99.7% of normals. You don't know quite how precise the retic count is either. So, a retic count of 36 is almost in the 99.7% range. Try not to worry!
Thanks so much for such a comprehensive explanation! My HB hasn't altered drastically - it was 124 back in early July, 144 one month later (after a single B12 shot from the GP), late August (after just beginning self-injecting) and was 144 at the end of October, after over 2 months of SI. Generally speaking, over the last 20 years, it's been in the low 130s range, occasionally low 120s, never higher than 146.
I have no previous results to compare the Retic count with, unfortunately.
I'm getting my Immunoglobulin G subclasses just to confirm whether the small elevation is down to the Hep A.
I'm trying not to worry and it may amount to nothing, but would just like to be told the reason for feeling so wiped out and weird all the time!
Thanks again - I appreciate all the information 🙂👍
If your Hb has remained in a fairly stable range then the retic count is unlikely to have been much different, because that's how homeostasis works. The wonders of how red cells work at oxygen transport means that it's not a simple 'more is better' relationship. It's far more complicated than that. If you went to live in Nepal for instance, your Hb would rise, as the air is 'thinner' and you'd produce more red cells to increase your oxygen carrying capacity because your Epo secretion would rise until you plateaued out. If your Hb rose [well, your Hct but it's the same thing] above around 50% [0.5] then your whole blood viscosity would rise too, and all of a sudden, circulation wouldn't be as efficient. Your heart would be working harder to pump it round.
Thank you so much - I didn't know much about the production of red blood cells so this is really helpful! Do you know anything about Free Kappa Light Chains please - I wondered why mine are above normal, though the Kappa/Lambda ratio is within the acceptable range. I got the tests done privately (Blue Horizon) and along with the results received a report from their GP, who mentioned the possibility of MGUS, but my own GP didn't even seem to acknowledge this. I wondered if anything else can cause them to rise.
I'm on the very extreme of my area here; if the ratio is OK then it's not likely to be monoclonal, as a clone produces either lambda or kappa, if I'm remembering this correctly!
Non-specific increases in immuloglobulins can be seen in immune response to a stimulus. If you go and get chewed by a horsefly [cleg], you can find a spectacular broad spectrum response to the bite. [No, it's not a bite; they chew. Horrible things, and when you see where they live it's not a surprise we react. They live in the pools of brown goo that oozes out of piles of horse poop.]
The downside to walking in beautiful Austrian countryside. [Or here.] They do seem to like the back of the knee, and I didn't know until they've done their deed.
Having a high reticulocyte count simply means your long marrow bones have made more which are now developing into fully formed red blood cells. So your body is probably correcting a shortage of red blood cells or anaemia as thats called.
Thanks very much you for your reply. The reticulocyte count is actually on the low side, which was what was concerning me as I've been injecting so much B12. I wanted to understand why this could be as I would have expected it to be much higher.
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