Hi, hope I’ve posted this to the right group. Not sure if I’m looking for advice, reassurance or just need to get my feelings out somewhere. I’m female and in my early 40’s. In January, I noticed I have frothy urine quite often so I visited my GP who did a kidney blood test for eGFR and an albumin urine test. My eGFR was ‘ok’ but not great and was 80mmol/L. The albumin test came back negative. So I just assumed everything was ok as no further testing was mentioned. The foamy urine has continued and sometimes covers most of the toilet bowl. After doing a little bit of research on Google, I’m now terrified I have Myeloma because if the protein isn’t albumin I can only see that it could be ‘Bence Jones’. I’ve seen a couple of articles online and in Myeloma forums that say frothy/foamy urine was an early sign. I’ve been back to my GP and they are now ordering a 24 hour test and looking for other proteins. In the meantime, I am absolutely petrified. I feel ok in myself most of the time but I am now so stressed I just feel as though I’m on the verge of tears all the time and I daren’t let my family know, especially when I don’t have any diagnosis for anything yet. I guess what I would like to ask if anybody reads this is what were your first signs of Myeloma? Also, does anyone know if proteinuria not caused from albumin could be anything else other than Myeloma? I know I shouldn’t jump to conclusions but I’m so scared and I’m also very angry at my GP for not following anything up when the albumin was negative in my urine sample. Thanks in advance for any information, advice or just for taking the time to read this. The only other thing I have is a bit of shoulder pain which I’ve had for a couple of years but it’s just like random deep twinges rather that severe pain so I doubt it’s connected.
Anyway, thanks again
Emily xx
Hi @EmilyF40 a great big welcome, I certainly cannot answer your questions.
Perhaps an option is a 2nd opinion, either on the NHS or shop around for private one at your cost.
However what I can relate to the urge to ‘Google’ for answers. I have to say it is sometimes not reliable. The information gave me a 5-10yrs life expectancy and 19 yrs later I am definitely still here .
Also I definitely remember the thoughts and feelings you are having.
The waiting for answers and the anxiety of not knowing and horrible feelings, my life was on hold.
I realise a diagnosis takes time as it is a process of elimination and so many symptoms could be so many different causes, but that did not help me.
Feeling stressed and feeling petrified can feel paralysing to me and logically I know .is no good for my health.
Please do get your shoulder checked out as well.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
The main thing you can do whilst you are waiting is to really look after yourself and be very kind to yourself.
Please do let us know how you get on
Hi @Erica thank you for such a quick reply. Wow, 19 years, that in itself is fabulous to hear! It certainly provides a little more hope. I mentioned my shoulder a couple of years ago and was referred to physio. I had a few sessions and was told it was my rotator cuff but nothing was ever x-rayed. It certainly hasn’t got any worse in those 2 years, it’s actually less painful than it used to be. However I will definitely mention it when I speak to the GP about my 24 hour urine test results. I feel stupid for being so terrified of something I haven’t even been told I have but I cannot help it. I also feel a bit of a fraud being on here without a diagnosis, especially when I’ve read what so many other people are going through that have already been diagnosed but I don’t have anybody else to speak to and I’m so scared of what may be coming.
Emily x
Oh @EmilyF40 I certainly do not think you are stupid or a bit of a fraud.
You are now part of our forum family so you are never alone and it is completely natural to be scared of the unknown.
I have given you the support line number so please do use it if you feel the need, I have found that they are all lovely.
Everything you say in my mind is completely normal.
Try and do lovely things, spoil yourself or divert yourself. I love listening to music and going out for walks (a great pastime if you are nosey!!)
Please do keep posting as I look forward to hearing more about you.
So today my GP Surgery called to tell me the 24 hour bottle was ready to collect. I’m going to do this tomorrow so it can go back on Wednesday morning. I am so terrified of it coming back positive for Bence Jones protein. Part of me has even considered burying my head in the ground and not doing the test but I know if I don’t it will make my anxiety even worse.
Oh bless you
The sooner you get it done the sooner you will know what your dealing with and start living again hugs
I have had to do Bence Jones bottles a couple times I was diagnosed with myeloma in 2017
I can’t recall seeing frothy wee at the time
I was diagnosed after being admitted to A&E with a gall bladder infection and very anaemic consultant passed my bloods onto haematology
Myeloma bone pain is painful it doesn’t go away and is worse with movement. Rib/back pain is a common pain.
Touching the ribs can be excruciating because they can fracture
Myeloma is very treatable and since 2017 newer treatments have arrived.
Myeloma UK is a great place to find information.
Here is the guide for GPs which may help you know what they are looking for and tests etc.
It’s good to read that your GP is taking notice of you and getting you to do Bence Protein
Oh @EmilyF40 I feel for you, you will be anxious if you do supply the sample and even more anxious if you don’t.
Perhaps you might be answering your own question.
Please do let us know how you get on.
Fingers and toes crossed for you.
Be kind to yourself
Hi @2DB and thank you for taking time to read my message and reply. My shoulder pain is very mild and part of me wonders if it flares up with stress.
I’m paranoid about Bence Jones protein because albumin was previously ruled out and it is nearly a year since I first noticed the frothy urine and it is there pretty much every time.
I’ve also been looking what blood tests may possibly indicate Myeloma as I had some done very recently following a bad burn accident while I was at hospital but can’t see calcium or light chain ones.
I appreciate nobody on here is a medical expert but if anybody reading this can see anything that stands out which I should maybe discuss with my GP further I would be grateful. I know my white blood cell count was twice as high as it was when I had a routine Full Blood Count only a fortnight earlier so I assume it was burn related as my results did say “Abnormal but expected”.
Looking at figures in brackets I think most look fairly normal?
UREA & ELECTROLITES (Abnormal but expected)
Serum Sodium – 138 mmol/L (133.0-146.0)
Serum Potassium – 3.2 mmol/L (3.5-5.3)
Serum Creatinine – 76 umol/L (43.0-71.0)
eGFR- 82 mL/min
Serum Urea Level – 4.1 mmol/L (2.5-7.8)
LIVER FUNCTION TESTS (Normal)
Serum total bilirubin level – 8 umol/L (0.0-20.0)
Serum alkaline phosphatase level – 32 u/L (30.0-130.0)
Serum total protein level 67 g/L (57.0-76.0)
Serum albumin level – 44 g/L (35.0-50.0)
Serum globulin level – 23 g/L (18.0-32.0)
FULL BLOOD COUNT (Abnormal but expected)
Haemoglobin concentration – 129 g/L (119.0-149.0)
Total white blood count – 9.30 (3.7-10.0)
Platelet count observation – 438 (150.0-450.0)
Red blood cell count – 4.71 (3.85-4.9)
Haematocrit 0.38 L/L (0.35-0.46)
Mean cell volume – 81.3 f/L (82.0-100.0)
Mean cell haemoglobin level – 27.4 pg (27.0-32.5)
Mean cell haemoglobin concentration 337 g/L (316.0-365.0)
Red blood cell distribution width – 15.3 (12.2-15.4)
Neutrophil count – 5.4 (1.7-6.6)
Lymphocyte count – 3.1 (1.0-3.0)
Monocyte count – observation – 0.5 (0.2-0.8)
Eosinophil count – observation – 0.2 (0.05-0.45)
Basophil count – 0.0 (0.0-0.1)
Sorry for the long post. I’m so stressed and scared right now of what my 24 hour test will return and as I said, I’m just posting the results above on the chance somebody may see something I should speak to my GP about in more detail not for medical advice.
What has given me a little bit of comfort is reading on here how so many people are still going strong several years after their diagnosis. I feel as though I’m a bit of a fraud as I am scared without even being told I have this and yet I’m reading such inspiring, brave posts from people who are diagnosed many of which sound as though they are coping better than me who may not even have it, I’m just assuming right now.
Anyway, I’ll stop waffling now and thanks again to anybody who reads or comments on here. I daren’t mention my worries to my family.
Take care all of you,
Emily xx
I’m no Dr and this is my opinion only I cannot diagnose you. if they were my blood results I would be happy with those but you must discuss them with your GP and keep letting him know your concerns.
I would be asking why Urea and electrolytes are abnormal but expected and what does that mean
I wonder if you have had a little kidney infection
My platelets are 154
My neutrophils go between 1.1 and 1.4
My kidneys are normal (they were on the verge of collapse at diagnosis)
My HB at diagnosis was 88 it now ranges 128-134
Stress does cause inflammation in the body
Illness can alter your bloods too.
Myeloma blood tests will be looking for protein, light chains as well as HB, calcium and others tgst I don’t think about
My protein on diagnosis was 145 light chains 1200
I like to know what my bloods are doing and I keep an eye on my protein/light chains/neutrophils/platelets
I’m keeping positive thoughts that this will turn out something easily treatable for you
Hi @EmilyF40 I really do appreciate the amount of time you have taken writing out your post but it would not be right for any of us lay people to comment on your results.
Your healthcare professionals know your whole medical history, I think we are very complex beings, so they take a lot of different things into consideration when ruling in or out a diagnosis.
You have also got your urine issues and recent bad burn accident to take into account with your results. I have found my anxiety does not do my body any favours either.
However I will send you a link from the Blood Cancer UK website that might give you some ideas for questions
Just diagnosed with blood cancer: now what? | Blood Cancer UK
Do ask all your fears, they make the best questions as they are what you are anxious about.
Perhaps just really look after yourself and keep posting
Thanks @Erica I appreciate that. I only wondered if anything maybe jumped out as looking odd for me to go back to my GP and ask about. I don’t really understand blood works and which ones I should be looking out for etc.
I totally agree that nobody should be giving advice or trying to diagnose anything.
I’m going to try and keep myself busy over the next week or so to try and take my mind off it, easier said than done I know, especially when I’m reminded every time I go to the loo.
Emily xx
Dear @EmilyF40
Thank you for posting and I am so sorry that you are going through a time where things are uncertain. It is hard not to worry but I would encourage you to keep positive.
May I ask whether your GP has sent off your urine for Microscopy, Culture and Sensitivity? This test is used to diagnosis urinary tract infections which can lead to temporary kidney function abnormalities.
We are unable to interpret your blood results but I would expect that if there were anything significant then your GP or indeed the laboratory that evaluated them would highlight this and ask for a repeat.
When you are concerned about your health it is important to relay this to your GP and it really helps if it is presented to them with a clear time line as this can help find the cause. There is some information here around being worried about blood cancer: Blood cancer symptoms and signs | Blood Cancer UK
I do hope this helps and do call if you need to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hi @GemmaBloodCancerUK thank you for your kind reply. I first visited my GP about my foamy urine m in January and they did an albumin test which was negative and cultures then. I’ve also had urine cultures done again recently which were also normal.
To be honest, after I tested negative for albumin I assumed everything was ok. The foamy urine has never stopped though and I thought it must somehow be normal until I saw a story in the news about a lady who’d been late being diagnosed with myeloma but believed her first symptom to have been foamy urine.
I’ll be honest, reading the article sent my mind into panic instantly and I then began wondering if my shoulder pain that I’ve also had for ages could be linked too, although it’s only very mild.
Anyway, since reading that article, I have made myself really ill with health anxiety as I now can’t see any other cause for the frothy urine apart from Bence Jones protein as albumin has been ruled out both in January and in a routine test a couple of months ago. I know I shouldn’t jump to conclusions but I have read more and more online about BJP. I’m so scared and I daren’t let my family know or see how it’s made me feel which is how I ended up on this forum.
I’ve sent in a sample for a dipstick test and I’ve started my 24 hour collection today too which I’ll be dropping back off tomorrow.
Thank you again for taking time to read my post and replying.
Emily x
Your burn accident got me thinking and wondered if burns had an affect on the kidneys
It seems it can do so there’s a question for your GP
Did your burn incident cause a little bit of trauma to the kidneys?
Unfortunately I doubt it as my accident only happened a couple of months ago and I’ve had frothy wee since at least January. Also my eGFR has been the same for the last couple of years if not more, the last few blood tests over the 3 years I can see on my NHS app it’s been between 78-90 and creatinine has been the higher end of the 70’s (just out of range) xx
So the sample I took to my GP yesterday for a dipstick test has come back positive for protein :o( It says they’ve requested a protein/creatinine ratio (whatever that means).
More worried now about my 24 hour test, especially for Bence Jones Protein showing up.
Hope the results from the 24 hour test will be back soon to put me out of my misery xx
Yes, @EmilyF40 let’s hope your 24 hr test results come back swiftly.
Please do let us know how you get on and when you get your results
Be kind to yourself, waiting is horrible
Thank you @Erica. Reckon it will be next week when I hear something back and I’ve convinced myself even more (if that’s possible) that it is going to be the worst case scenario for me. I read on a site somewhere (can’t remember which one as I have looked at so so many) that if you have Bence Jones protein in your urine that it significantly lowers your life expectancy which makes me feel even worse.
Trying to keep my mind occupied as best I can whilst I’m waiting to find out but it’s not easy.
Emily xx
No @EmilyF40 it certainly cannot be easy waiting and why do our minds go to the worst scenarios, even when I get my test results I do not rejoice in the readings that appear to be in the normal ranges, oh, no, my mind catastrophises about the one reading that is out of range.
I am also brilliant at searching the internet for the ‘worst case scenario’. I ignore all the more positive information and obsess on the one piece of negative.
I think it is because we are human, but perhaps not let it rule our lives.
I did that with my leukaemia even though my GP said that I was more likely to die by being run over by a number 65 bus and believe me there were were quite a few of those buses in those days, they were also night buses.
Be ever so kind to yourself xx
Hopefully you’ll get more answers next week. But just fyi that while myeloma might be one potential outcome , there are various other conditions that could produce such symptoms . Also be aware that while multiple symptoms may point to a single disease , occasionally it can be down to separate and distinct issues, not necessarily related. I have had kidney disease for over 25 years so foamy urine is normal for me. I tested positive for Bence Jones back in 2020 but it was related to a type of slow growing lymphoma , not myeloma (I’d also had 2 negative Bence Jones tests in the two years previously).
As your doctors start to narrow down what it might be, also be aware there are likely to be more tests, scans and blood tests to come. It’s really hard waiting to get a diagnosis but try to take each step one at a time would be my only advice. Easier said than done I know! Good luck x