[graham-cParticipant]

It would be worthwhile reviewing your eGFR (kidney function) results. If you don’t have a historical record, then your current figure may represent a clue as to the underlying cause.

I am told that my figures don’t warrant any treatment by haematology (fair enough – their call) but my eGFR results fall within NICE protocol for referral to Nephrology and this could be the cause of your symptoms.

I claim no medical knowledge in this matter.

[graham-cParticipant]

I am going to write to the Leicester Royal Infirmary directing them to follow the NICE protocol for handling accelerating decrease in eGFR which entails referral to Nephrology based on the figures they have provided. I do not know whether or not they have noticed this but they have not acknowledged it to me.

If it has nothing to do with my light chains (that are bad enough) then my eGFR decrease represents an incidental discovery that should not be ignored, and NICE makes clear the procedure to follow. Nephrology have their own tests and will take account of BP, diabetes and heart disease.

I am also concerned that the adulteration of my blood sample with Hiparin will artificially improve my eGFR, not representing a measure of what actually flows through my veins.

[graham-cParticipant]

I’ve finally received the missing results from my last blood test and unsurprisingly it would be fine for a first innings Test Match score but not so good otherwise

Serum Free Lambda Chain 697

Serum kappa/lambda ratio 0.02

Interestingly there is a ‘blurb’ included intended to allay any concerns that has the opposite effect.

“Serum free light chain results should always be interpreted in conjunction with other laboratory results and clinical evidence.”

The fact is that my eGFR has declined to an extent that according to NICE guidelines warrants referral to Nephrology, and Haematology appear not to have noticed.

If I accept that my light chains are irrelevant, they are obligated under NICE guidelines to make a referral as they would for any incidental discovery of this nature.

I could wait for my next test results but I think it would be better for me to bring this matter to their attention earlier rather than allowing things to get worse.

[graham-cParticipant]

The more I discover about Hiparin the more shocked I am. I have MGUS which was stated in answer to a direct question from me. This does not require treatment.

The Hiparin syringe was included with the next blood test forms without explanation. I didn’t even know it was a syringe, let alone what it was or what it was for.

My recent eGFR results fall within NICE guidelines for referral to Nephrology, so that is what I imagine it’s for, but this is not how it should happen.

NHS highlight Heparin as a drug with serious risks and which requires a patient to understand those risks. It even goes as far as to suggest patients wear a wristband pointing out that they have taken it.I won’t go into further detail. The NHS site mentions referral to the CQC.

I don’t want to leave this for a nurse taking my next blood to handle so I’ll go into Haematology this week and point out that I’ll be submitting a complaint. I’ll likely take it further than that.

[graham-cParticipant]

cjleeds – you mention kidney problems in your post and I would be interested to know whether or not any treatment or medication has been prescribed for that.

[graham-cParticipant]

A little more research reveals that amlodipine and ramipril are both contra-indicated for use with heparin and these are prescribed for me for hypertension (high blood pressure). That being the case I won’t be handing the heparin to the nurse to inject but I will raise my concerns with her.

A one off injection of heparin has no therapeutic benefit.

Next I should be getting my light chain figure and ratio from my Subject Access Request.

[graham-cParticipant]

I am not a happy ‘bunny”. I now discover that Heparin is contra-indicated for anyone taking Amlodipine. I won’t therefore be taking this injection. It is simply unethical to hand injections to a patient in a ‘goodie’ bag without mention or explanation. I thought they were extra phials for different blood tests.

Heparin is an anti-coagulant and frequently used in the treatment of CKD (chronic kidney disease). One injection may provide temporary relief but has no long term benefit.

If my condition is MGUS, as Haematology insist, then why are they treating my kidney and not referring me to Nephrology as they should ?

I will be pursuing this matter.

[graham-cParticipant]

For 10 years I have been very relaxed about MGUS. In fact when I was in hospital just before Christmas, the year before last, I didn’t even mention it as one of my significant ailments.

Recent results and the realisation that Haematology aren’t following NICE guidelines for referral to Nephrology have caused me to question what is going on.

Like most people I imagine we don’t question what the hospital does, but I regret that I have major concerns. At my last appointment, along with the usual forms for my next blood test, two injection phials were included which I imagine are to be administered by the nurse when she takes the usual blood specimens.

To my astonishment I find that one is labelled Heparin. This was not even mentioned,let alone explained or its significance or risks discussed. It is an anti-coagulant I discover. By the by I have recently found that wounds on my legs take months to heal. I have not referred it to anyone but I would have if I had known I was being medicated to make the matter worse. It is a serious medication and I should be alerted to its prescription.

My next appointment is set to be by phone which, by experience, never happens, but it is likely to be quite challenging.

[graham-cParticipant]

I have issued an SRA in respect of the missing blood test results and, on checking historic results, I find that my eGFR results do fall within the NICE parameters for referral to Nephrology. Having said that I’m not seeking drama, so I will await the next figures in April before I decide what to do. I hope that I can discuss this in a mature manner with Haematology.

[graham-cParticipant]

My own experience has been complex and confusing. I have been deemed to have MGUS for nearly 10 years with no excitement. Appointments have been euphemistically referred to as telephonic, but no one ever calls. Since I normally get a print out of results in a month I have been relaxed about it.

The Christmas before last hysteria broke out since Haematology had tried to call me and discovered I was in hospital. No one told me what was going on and, even now, the best I could discover was that my kidney (I only have one) was in trouble.

Last year I was getting the same ‘silent’ telephone appointments but I pointed out that my lambda light chains were at 571.2 with a ratio of 0.02 and they wanted to see less of me. I also noted that where my eGFR had been steady at around 60 for years it had declined to 47 and is currently at 38.

Though I am normally placid,close to being comatose,at my last test the one thing they didn’t do was my flc. As a reward I am issuing a Subject Access Request and will do so every time I don’t get results.

The risk to me is Light Chain Deposition Disease and there are set criteria for referral to Nephrology laid down by NICE. If I have to do it through my GP I will. IF I get a phone call this time I’ll mention it.

[graham-cParticipant]

Though I do not have a diagnosis of Amyloidosis I have just read of a connection between Amyloidosis and Rheumatoid Arthritis as I felt it was too much of coincidence to have adverse blood test results and a diagnosis of RA so close together.

Since I already have diminished kidney function i do not have an optimistic outlook.

[graham-cParticipant]

I have had MGUS for over 10 years, and in that time had only one alarm that was resolved after a fresh blood test

I have had regular four monthly blood tests since then and just after the last one in late Novemner last year I went to A & E. Unknown to me my blood test had shown as abnormal and. because I was not at home to receive the telephone appointment and my telephone landline was not working (now resolved), when they discovered that I was in hosital. I think they had a panic.

I never got to know exactly what the abnormalities were as I had not spoken to Haematolgy but the doctors at A & R suggested that I had a kidney infection. Now I must mention that I lost a kidney to cancer in 2007 but my eGFR has always been around 60 for as long as I have had MGUS blood tests.

Haematology booked me in for a PET scan and bone marrow biopsy and I had every confidence that O would be all clear as I had no symptoms and. it turned out that I was indeed all clear. Unfortunately haematology lost the follow up blood test results from January of this year so I had another test. Promted by me. because for the first time I was, and am still suffering from terrible bone pain though. in view of the PET scan and biopsy results it has been diagnosed as arthritis.

The latest blood test shows serum free lambda light chains 509.3 and kappa to lambda ratio 0.01

Annoyingly the blood test report plays down the flc results snd refers to the flc as a ‘slight’ rise. No GP will give any significance to the flc result.

The arthritis appeared out of the blue at the beginning of March this year. How unlucky is that ?

I am having another blood test this week and that alone is significant, since I have gone from blood tests every four months to having three in four months.

I could add more but this is enough for now
I must ad.it that what I have read about Lsmba flc is not very encouraging but I’ll let you know how my results turn out

[graham-cParticipant]

I have been diagnosed with MGuS for perhaps six or seven years. I used to be quite fixated on the blood test results but not so much now. The one thing that you say that is revealing is that your next blood test is in three months time. My blood tests are at 3/4 monthly intervals and I consider that this is for those in the lower risk category, though there is no way to determine your own personal path with this condition, I take it that I have nothing to worry about as long as my blood tests intervals remain at this level. I once did get a call once after one blood test telling me to come back immediately for another test, but I felt so well I wasn’t concerned, and it turned out to be nothing. I don’t even get an appointment at Haematology nowadays and they are supposed to ring me with the results, but rarely do, which doesn’t bother me since I get a latter from my GP in due course.

At one stage my results had fallen so low I thought that i would be discharged, but that didn’t happen. Rather like investments, they can down as well as up. The important thing is that you’re being tested but, until it spikes (if it ever does), it’s simply a matter of waiting and getting on with life. I’m a spritely 68 year old and get plenty of aches and pains from time to time, but nothing I can blame on Myeloma. The MGuS blood test is so all encompassing, it’s quite useful since I lost a kidney to cancer 13 years ago and enables me to check my eGFR is, but even that has improved.

Maybe I’m lucky, but I keep an eye on the results and let Haematology do the worrying.

• This reply was modified 3 years, 2 months ago by  graham-c.

[graham-cParticipant]

Hi misswoosie

As regards paraprotein levels I’d use the analogy of people being measured for radioactivity, and we all have some level of radioactivity in our bodies since it’s in the environment all around us, especially in the rocks on which we live. Those living in areas with granite outcrops will be more radioactive than those living elsewhere.

The point being that ideally no one would have any detectable radioactivity in their body The ideal and perfect level being zero but that is unachievable. The same applies to paraproteins. You don’t want them but a large number of the population do, as I do too.

The important issue is the level and I can’t stress how important it is for you to know your results if you want some understanding of your own condition. The level itself is important but, beyond that, what the hospital will be most watching out for is significant change and trends. I have my results in a list over the part five years. It’s not that I’m smart, but I had kidney cancer ten years ago and I wasn’t told things, I was told things that weren’t true and it went badly wrong. I learned my lesson. Saying that I am not rude or aggressive with medical staff because of he past. I can achieve a lot more with charm and if you harass doctors they will ‘clam up’ on you.

My blood test results are my ‘comfort blanket’ and they give me the confidence to be calm and know what I’m talking about. As I write I am waiting for a call from the hospital with my latest results and I’m worried they’ll let me down, but I can handle that and remain charming too because I can submit a ‘Freedom of Information Request’ on them and they are legally obliged to  send me the results.

As regards eGFR, since I lost a kidney ten years ago, that is my specialist area, so to speak. My eGFR is in the 60’s and it has dipped into the 50’s before now. By knowing my figures I was able to tell the hospital/GP that my results had been falling so constantly over a period that under NICE rules I should be referred to Urology but, since 50 itself was no threat to me I chose to wait and see if results improved, and they did. I don’t want unnecessary treatment and, by knowing my figures, I could make that judgement.

As with paraproteins, what counts is the level and progression of test results. I have found it very beneficial to know my own results and track them and it has also meant that I don’t have to pester the hospital without good reason. The same with Free Light Chains.

Oh dear. A letter I have just received suggests that i won’t be receiving a call or my test results. They must be yearning for one of my FoI Subject Access Requests.

• This reply was modified 6 years, 8 months ago by  graham-c.

[graham-cParticipant]

I am at five and a half years of being MGUS and I could go another 10 years with no change. There isn’t any way to predict other than by having continuing blood tests. The progression rate is really quite small. Last year I had a small blip that caused some excitement but they took another blood test and it turned out simply to be an isolated blip so, even if you get one set of abnormal results it isn’t necessarily the start of full blown myeloma.

It’s ironic that the less frequently you’re seen is an indication they don’t see you as being at greatest risk of ‘conversion’. I get bloods done once or twice a year and get results over the phone.

I just had my bloods done this week and I do feel a little nervous but, what will be, will be and chances are there is no change. If I didn’t have the tests I know that would ignore problems until it was too late. At least this way it takes the responsibility out of my hands. They’ll tell me and it’s in their hands.

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