[misswoosieParticipant]

Thank you. Health hasn’t been my normal for over a year now. I don’t know what the reuslt of the last blood and urine test for paraproteins was ( beginning of March). The GP surgery told me know further action was required when I called for the results, so I assumed there were no paraproteins. In Nov last year the serum electrophoresis report said there was a possible small band in the gamma region ans suggested the test was repeated in 3 months.

When the surgery called yesterday, they said the GP had asked them to call and get me to book an appt to get bloods rechecked. When I acted surprised/confused they said that the haematologist (where I had the first plasmaphoresis test done) had sent a letter in April saying that I needed to have my bloods done every 3 months for the first year. The GP receptionist said it looked as though they’d sent the March blood results to the Haematologist. I don’t understand what’s taken so long. I do know that after feeling quite good for about 6 months over the last 2 weeks I’m starting to feel exhausted, joints/bones ( hips, knees,shoulders) are painful and stiff again and I look like the proverbial.  My gums are also sore and inflamed and after improving seem now to be badly receeding again.I’m also experiencing problems with my balance and coordination and vision again. The last time I felt like this was about a year ago and my creatinine, although within normal ranges, was much higher than usual for me and my eGFR was about the same as my 80 year old mothers! That settled down within abiut 3 months and that coincided with me starting to feel better. As I mentioned in my first post on here, one of my blood clotting “times” was prolonged.GP tested that about 3 times over 2 months and it never normalised, however it was normal last November  at Haem’ appt. Personally for me (always ran with a haemaglobin of around 140) I’m anaemic at 124. My last red blood cell count was just in the normal range and my albumin was right on the lower end of normal. I think I’ve lost about a stone and a half in the last 18 months ( dropped 1-2 dress sizes) and I’m not trying at all. I also seem to have developed sensitivities whcih I’ve never had before. My scalp doesn’t seem to tolerate any shampoo. I’ve had coal tar for psoriasis, anti fungal/medicated for ? fungal /bacterial infection and none helped. I get red, painful spots which then become scabs. It hurts ans my hair is like straw and falls out.Again, this was really bad about a year ago and had settled down quite a lot and hair was looking and feeling so much better, but now in the last 2 weeks scalp is horrendous and hair is like it has no elasticity or anything.

Sorry to bang on, but I know I’m not well and it’s soooo frustrating. I’m the type of person who can get up at 8 am and work physically gardening or painting and decorating till 7pm. I have far  more energy usually than my husband who’s 9 years younger than me! 2 years ago we were in Portugal pruning 100 Olive trees with chain saws!

About 12 years ago I was misdiagnosed as having IBS which for a period of 2 years continued to gt worse despite a healthy diet , drinkig plenty of water etc etc. It got to the point where I was taking 2 days a month of work because I was in so much pain. Then I was rushed into hospital (the one I worked in as a Clinical Nurse Specialist)) with severe abdominal pain. They told me I had a pelvic  infection despite my temperature and all blood tests being normal and started antibiotics and sent me home. I said I wasn’t happy and that I wanted a scan. They told me to come back in 2 days. Bingo- ruptured ovarian cyst and torsion of ovary which was by then necrosing. All my bloods were abnormal-anaemic and kidney function severely compromised. 2 hour operation. Almost needed Intensive care. That’s one of the reasons I don’t trust that they’re always doing the best thing for you.

Anyway GP is calling me in the morning so I’ll ask if they’ll recheck my kidney function and Full blood count as well as the paraproteins. I’m going to call the Haematologist’s secretary and see if they’ll tell me what the letter said or ask for a copy.

Again sorry to go on.

[misswoosieParticipant]

I know this thread is older, but thiught I’d respond anyway.

The message “If the pp’s are above 5 after October 2016, then there could be a 20-30 per cent shown increase” would be from the Haematology Laboratory. They’ve probably changed their analyser (machine) that they use to do the blood tests on. The other option is that they’ve changed their reagent which is the substance that they add to the blood sample before they put it in the analyser. Usually if this happens and it makes a difference to the results then there will also be a change in the laboratory normal ranges. In this case it looks like the lower and upper ranges might go up by 20-30% . Hope this helps.

[misswoosieParticipant]

Hi there. Feeling somewhat shocked. Just received a phone call from GP’s surgery asking me to make an appointment to have bloods checked as they’ve had a letter from Haematologist saying that(according to receptionist) “bloods need to be checked 3 monthly in the first year”. Now I understood that’s the case with a positive test (although surgery told me no further action was required when I called for repeat blood results in March-see above post), but would they also check every 3 months for a year based on the blood test in January which showed a possible Gammopathy? Have asked GP to call me and she’s ringing on Wednesday morning. I’m still “not right”.

[misswoosieParticipant]

Hi and thank you Cygnet. I spoke to GP reception yesterday morning regarding bloods and was told GP had said no futher action required,so I assume that means no para protein. The haematologist (in letter to GP after my OP appt in Nov last year) suggested that GP should check blood and urine in 3 months time and re -refer to haematology if they were positive. I’m sure there’s something going on but without any “positive” blood results seem to be stuck. GP’s seem to be very good at putting evrything down to anxiety and “your female age” and , although you might think it would be helpful, the fact that someone was a nurse (practitioner latterly) for 27 years seems to be a hindrance. I wonder if in areas that still use the clasification of “smouldering myeloma” there’s a distinction between the monitoring and follow up for MGUS versus smoldering myeloma? I’ve lost a lot of faith in the NHS  over the last 15 years both as a nurse and a service user. Thanks again for your reply.

 

• This reply was modified 7 years, 8 months ago by  misswoosie.

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