Every hospital website has a page detailing how to make a Subject Access Request by which means you will obtain the details of any test(s) they perform on you, including scans if required. It’s simple and cost free, though scans may require a fee.
I have done it many times. I usually get written results regularly but when I don’t, I submit an SAR. It’s important not to abuse the system with multiple frivolous applications and I have had many recent tests and scans for which I won’t submit SAR’s. Use the system judiciously.
It’s amazing how quickly things can change.
The Consultant who confirmed my AL Amyloidosis diagnosis is brilliant in all respects, and I would rarely give such praise. He was charming and he dealt with my challenging concerns with honest and direct explanation.
So when he asked if I would want to begin Chemo – I said ‘Yes’. My most recent test results were little changed one way or the other and though I wasn’t expecting anything to happen until two further scans had taken place he thought treatment should begin now.
Beginning Chemo is rather like being picked up by a tornado. Half an hour of potential side-effect warnings, consent form, HIV/Aids and blood typing tests and I arrived at the hospital for the first all day chemo session and injections. My level of apprehension was massive, increased by the plateful of pills I was given to take. That day and the following day I must have consumed 50 tablets in all. It was as well that I took a rucksack with me to hold all the pills I took home. As it turned out I had no reaction and was fine.
I am not belittling the experiences of others. This is only the beginning and, as chemo degrades my immune system, I am sure that challenges lie at ahead. Worst of all I still have MGUS, AL Amyloidosis does not replace it.
Future weekly hospital visits for injections will be shorter now they know that I can tolerate them. The hospital was fine and I had a Walkman and book to read to while away the time between ‘obs’.
I have bought two Tupperware boxes to hold and separate the weekly and daily pills to avoid confusion.
Best of luck to all on the same path.
I have no medical knowledge but I have noticed that when the hospital takes my regular ‘bloods’ they include a phial containing an anti-coagulant. Most likely coagulation is down to some storage failure. Presumably they will retry and you’d have expected them to tell you when they gave you the result.
This is my own opinion based on having no medical knowledge.
I have been stewing on the situation I find myself in and, though I regret having to do this, because it appears unlikely that I will receive any treatment until next year in spite of finally extracting a diagnosis of AL Amyloidosis from Leicester Haematology, I would be a fool to myself to allow this to continue without comment.
I have to condense and overlook some things that have taken place but one simple task a Haematology Department/Physician should be capable of is the interpretation of blood test results and making diagnoses based upon them.
At the beginning of this year I posed the simple question to the Consultant as to what diagnosis could be made from my then current test results. There was a blank look and silence which the nurse broke by stating “MGUS”, being my current diagnosis. I responded “Not Light Chain Deposition Disease? (effectively Amyloidosis)”. “Certainly not” I was told. My expertise lies in examining and scrutinising complex technical documents and I applied this skill to the task.
I was shocked to discover that my falling kidney function level had not been picked up in my blood test results by Leicester Haematology. Indeed under NICE protocols they had to refer me to Nephrology which I pointed out to them. Also, Amyloidosis and failing kidney function are natural bedmates. That is two fails in interpreting blood test results.
Since then I have been enrolled in a never ending series of tests and scans including bone marrow biopsy, PET scan, echo cardiogram and blood tests. The first two of which have been duplicated. Meanwhile my light chains have broken the thousand barrier (normal maximum figure being 29.6).
I have been told that I will need to undergo two more scans that haven’t been arranged yet.
This is not the full story and I dread to imagine what my latest test results will be. Another thing was mentioned to me at my last Consultation that contravened NICE protocols. Contradicting Consultants is not normally considered wise but I have encountered more roadblocks than treatment with Leicester Haematology.
I’ll mention what the latest proposed protocol breach is after discussing it with the Consultant.
I had another blood test today prior to a Consultation next week when I hope I’ll discover what treatment is planned, if any. Having said that I know that at least two more scans are intended which haven’t been fixed up yet.
I am caught between blood test results rapidly worsening to an alarming extent, an increasing series of scans and tests serving as obstacles to anything happening and the possibility that results will become so bad, there is no treatment option; not that I’m relishing the thought of chemotherapy, should it ever happen. I have reached this situation under Leicester Haematology’s continuous monitoring in spite of my concerns voiced at the beginning of the year. I am not amused.
I finally received the diagnosis last Thursday that I was expecting – I have ‘AL Amyloidosis’ and I will therefore transfer this thread to the Amyloidosis section to keep things tidy.
The truth is that you are legally entitled to know your results. There ARE rare circumstances in which they may withhold them but it’s unlikely to apply to you.
Look up the hospital on the internet where you gave your blood test and search for ‘Subject Access Request’ and it will tell you how to apply. It’s a simple free letter you send and the hospital is legally obliged to provide the information requested.
It’s something I have done many times. I was MGUS for over 10 years and, to be fair, most times I was told the results. I kept a spreadsheet and it was reassuring. Very recently I noticed something the hospital hadn’t picked up and I’m now deluged with hospital appointments. Almost inevitably it’s amyloidosis.
Do it once or twice and they’ll realise it’s easier to give you the results in the first instance.
Things have advanced dramatically since my last post. Though I am still officially MGUS, my current blood test forms have handwritten notations of ‘amyloidosis.
I have an appointment for Nephrology in early August and I have received a torrent of associated hospital appointments. I had a PET scan last week and that didn’t go according to plan (not my fault).
I have an echo cardiogram and a bone marrow biopsy arranged in short order before I go back to LRI Haematology late in August.
My latest results were
eGFR 45
SFLLC 950
Ratio 0.01
PP 10.0
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.
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.
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.
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.
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.
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.
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.
