Posts tagged 'Ferritin'

Steady as she goes

Posted by on September 12th 2019 in Health, or lack thereof
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T+133 yesterday and I was back at LRI for another weekly haematology consultation and another bone marrow aspiration (no trephine this time). It seems that I'm doing quite well - they stopped the "you'll probably be on these forever" anti-rejection Ciclosporin, stopped the Folic Acid and told me that the Isavuconazole can stop when I've finished taking my current stock. Bloods are good, and the Serum Ferritin is decreasing without provocation.

Of course, all this means that I'll be taking a managed risk from now on, but I'm sure that they will be there to catch me if my parachute fails.

They're pleased that I've arrested the weight-loss but say that I still need to work at putting on a few more pounds each week. If I start losing again, I'll be admitted and fed via a "nose-hose" (nasogastric tube). The advice from my haematologist and from my dietitian is to "eat lots of crap food", which flies in the face of the healthy-eating advice given by the cardio team. I think I've struck a fair balance... I'm getting decent mileage from large doner kebabs with salad and chili sauce, and the... ahem... occasional Guinness 🙂

I must admit that I'm perplexed by their parameters for my weight-increase efforts... my current weight and BMI are well within the healthy range for a bloke of my age, height, ethnicity and activity level, yet they have set a target well above the NHS guidelines, and the cut-off for the "nose-hose" is slap-bang in the middle of the healthy range.

Maybe they're fattening me up for Christmas?

Ups and downs

Posted by on August 23rd 2019 in Health, or lack thereof
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T+114 today and I was back at LRI for a haematology consultation and a fourth and final dose of IV Rituximab. During Wednesday's cardiology consultation at Glenfield Hospital I was told that my lack of get-up-and-go was due to me being anaemic, but today the LRI doc told me that I'm not. Today's Hb level was 109 g/L, and normal is 130-180 g/L, so go figure.

Platelets and WCC are both the highest they've been since 2015, and neutrophils are holding steady in the middle of the normal range, so that's all good. Serum ferritin, however, is at an all-time high, so high that I've had to extend the y-axis on the charts. The most recent test has the level at a whopping 4201 × 10-6 g/L (normal is 15–350 × 10-6 g/L, preferred is 50–200 × 10-6 g/L) but they say that I can't start venesections to reduce the level until next year which means living with the effects for a while yet.

The Glandular Fever has resolved, so they've decided that I won't need those incredibly-expensive Epstein-Barr Virus (EBV) Specific Cytotoxic T-Cells after all.

You'll have to excuse me now - I need to get back to the feeding regime... I need to take in at least 2000 calories a day just to maintain my reduced body-weight, and they'd like me to up that to at least 2200 a day to help me to regain 15kg of the 30kg that I've lost since the start of the year. I seem to spend most of my waking hours scoffing or crapping. I'm not short of suitable food and drink but having an appetite and functional taste-buds would help.

AML’s Ass… well and truly kicked

Posted by on July 13th 2017 in Health, or lack thereof
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There's good news for a change - for the first time since diagnosis way back at the end of 2015, all of my key test results are in the green zone. The consultant declared me to be "normal" - a sweeping statement that I soon corrected, much to her amusement. I've not been "normal" ever since the first time my Mum took me, newborn, out in the pram to go to her local butcher's shop. She parked me up outside, went in, bought her pound of flesh and then went home. A while later she realised that two things were missing - me and the pram! 😳 Mentally-scarred for life, I was.

Anyway, the usual caveats apply - in theory the docs could have given me someone else's results again, but I think I'll give them the benefit of the doubt this time.

Here you go:

It's been an interesting journey, thanks for sharing it with me.

Counter-productive

Posted by on May 18th 2017 in Health, or lack thereof, Video (YouTube, Vimeo etc.)
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I went to Leicester General today for yet another venesection. While I was being bled they gave me my serum ferritin test result for the sample taken prior to the previous venesection performed on 27th April. That result was 427 × 10-6 g/L

Compare that to my serum ferritin test result for the sample taken prior to the outpatient consultation at Leicester Royal only the week before. That result was 366 × 10-6 g/L

That implies an increase of over 16%. With no medication or medical procedure between those tests.

Now, I've taken on board their assertion that they are OK with swings of up to 20% (regardless of whether I'm OK with them), but that applies to things which are supposed to stay fairly constant. In this case, however, we are dealing with something that's supposed to be a reduction protocol. There is no good reason for such an increase, yet I suspect they'll say that it's no cause for concern.

I'm no jerk but I do know the difference between shit and Shinola...

 

I'll get the result of today's test next Tuesday, and there will be another test prior to next Thursday's out-patient consultation. I reckon that those results will confirm that it's a lab problem rather than anything wrong with me.

It could be an interesting week at University Hospitals of Leicester. If they pin the blame on differences between what goes on at the test labs I'll be lecturing them about calibration, standards, and the like. I'll be on firm ground there. I think that their "swings of up to 20% are OK" assertion is just an arse-covering disclaimer because their labs/tests aren't calibrated against a common standard and hence results from different labs are not comparable.

If I had to put my money on one lab or the other, I'd slap it on the General. They have lots of experience with venesections and associated tests for haemochromatosis patients, and that's why the Royal send me to the General for my bleeds.

But it's the consultants at the Royal who decide on my treatment, and they act on the results of their own tests.

Of course, the usual caveat applies... they can't both be right, but they could both be wrong.

Up and down like the Assyrian Empire

Posted by on March 26th 2017 in A bit of a rant, Health, or lack thereof
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Latest test results (from week 38 23/03/2017 test/consultation) plotted, so more boring blood-test result charts. I'm told that the results aren't important, so don't bother reading any further... unless you want to mouseover the charts to see how they look with spurious data removed, hence showing the real trends.

So far only points for week 28 (12/01/2017) have been removed in the mouseovers. You might recall that I ranted about those results here. The serum ferritin result of 998 from week 15 (10/10/2016) has long been discarded as pure fantasy. With those dodgy results removed there are clear ongoing downward trends to the whites and the newts over the last 4 to 5 months, and the whites are now bang on bottom-limit. But it's not important, they say.

In my opinion, the latest value for the Serum Ferritin (499, week 38, 23/03/2017) looks to be, well, rather convenient, seeing as they were aiming for a target of 500, and the previous three values were 696, 643 and 642. And yes, I did tell them almost exactly that at the consultation, and I also told them that the previous week the blood-letting staff at LGH were quite concerned that their venesection protocol had ceased to be effective. Time will tell if I have to declare that result as dodgy, but for now I'm letting it stand as either a valid but surprising good result or as testimony to data creativity.

But it's not important, as they say.

Yet for some reason they have changed my 6-weekly checks back to 4-weekly.

Hmm...

 

 

Snatching defeat from the jaws of victory – Part 2

Posted by on January 13th 2017 in A bit of a rant, Health, or lack thereof
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The call came, the results are in, and they're not brilliant. They make a mockery of yesterday's result-less consultation, which I am sure would have had a significantly-different outcome if the results had been available for analysis at the right time.

So, let's see what's what...

Ferritin vs Hb: Well, the ferret-reduction process continues to work while the Hb manages to stay within acceptable limits, but the rate of reduction has decreased significantly:

 

 

Neutrophils vs WCC: These are both trending downwards which isn't good. The newts are heading towards their bottom-limit, and the whites are now below their bottom-limit. I suppose it's possible that the lower-than-usual results could be explained by the testing being done by a different lab, but I suspect that the drops are real. If the latter, it could be that my remission has stalled, or it could be that my levels have dropped due to me fighting an infection (which is unlikely considering that I have a low CRP score of 5). Either way, it needs the beady eye of a diligent consultant, and probably further testing, to figure it out:

 

 

Of course, it could have been dealt with yesterday, but it was so easy for the consultant to smile it off, blame it on the system and assume that all was still OK. Well, here's the news, Professor... IT'S NOT OK. And that means an unplanned visit to LRI early next week, and another unnecessary cost added to the NHS overdraft.

It's not all bad news... platelets are higher than usual (213), so at least I won't bleed to death any time soon.

You can tell that it's Friday 13th.

P.S. I suppose it's possible that I've been given someone else's results again, they do seem rather prone to doing that for me.
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