Stage 3 CKD for 2 years and my Rheumatologist did not tell me!

[Jo883]

Hi everyone,

I went for a medical review just recently and happened to see a Dr I have not seen before. I thought it would be a quick in and out, but he really was very thorough. He then asked me about recent blood tests, so I told him that I have them regularly and the Rheumy had said all was fine and she was happy with all my bloods. I had been on a diet being careful what I was eating and my blood sugars, cholesterol etc were really good, and that's what I told the Dr. So he brought them up on the screen and said yes, all except your creatinine, it is consistent with stage 3 CKD. I said to him that I had a high reading awhile (2 years or more) ago brought it up with the Rheumatologist and I remember saying to her 'well in light of what you think is wrong with me shouldn't you be checking it' at which point they all scurried about to get my wee dipped for protein. I was told that was ok. But the Dr said no it has been consistent right across the board for 2 years!!

I am a bit upset about all this because I believe if you have the right info, there are things you can do to help yourself. Also the Dr said that I should be having my wee dipped regularly, I have only had it done once. I have to say I'm quite stunned at not being told this info. I used to get all my blood tests printed from the Dr but my surgery is in another village and now my prescriptions are just beamed through to my chemist so don't tend to go into my Drs very often.

I also have Trigeminal Neuralgia which I've had for awhile but didn't know what it was and questioned him about it as I was worried about flying. This has been rearing it's head again with my flares. I had it quite a lot when I was really ill, then once everything became stable not so often. Just recently it has been rearing up again and it is excruciating.

I still have no official diagnosis- I am down as Sero negative connective tissue disease and Chronic fatigue syndrome. I flare each month (!) with my menstral cycle which is actually every 3 weeks. I'm lucky if I'm well-ish for a week of that. But I have to say I am at a place now that I feel stable and this is as good as it's going to get, and I am grateful for that, because I can take care of my family. I did have a good 2 years of being completely incapacitated. It was a long black tunnel. I take 10mg steroids daily, Hydroxy and Neurontin.

I have all the symptoms of lupus, malar rash, temperatures, night sweats (not so bad atm) Ive had hair loss, and lost a lot of it and had patches missing, ulcers, mouth, nose, eyes, joint pain in most joints to the point where I feel broken and it hurts to breathe, I have neuro problems where my legs give out randomly, chronic fatigue, cognitive dysfunction, speech problems the muscles in my face drop - the list goes on and on. Thankfully I have always kept a diary else I wouldn't remember everything.

I still have no solid diagnosis as my bloods remain negative!!!!!

A lot of Lupies seem to get Trigeminal Neuralgia- I wonder about the connection.

Also, when a Dr is nice to you, takes his time, doesn't want to rush out the door and treat's you as a human being - that's quite a refreshing change isn't it?!

I just needed a bit of a rant really!

Well wishes to you all xx

[EOLHPC]

Am so glad you posted Jo: GRRRRREAT post 🌟🌟🌟🌟...of course I wish none of this bad stuff was happening to you..but you put the experiences & feelings into words so well that you're speaking for all of us...and I especially smiled at your lovely comment re Drs who don't rush us etc 😏...am so glad you saw a True Detective doctor for this review

I'd be stunned too at your kidney status: you deserve more timely & open communication about your results 😠...hope your medics now know this is not on: time to change their ways, with you in the driver's seat...I go in to my surgery to get blood test result print outs on demand....and my lupus clinic includes them in reports

I'm seroneg too...and on a fairly typical cocktail of combined therapy lupus meds...which means am unlikely to become positive as long as my meds continue to be so effective...I'm lucky that my lupus & Vasculitis clinicians are great experts capable of seeing beyond sero negativity 😉

👍👍👍👍glad you're keeping that diary: REALLY helpful to both you & your medics

🍀🍀🍀🍀 coco

[Jo883 in reply to EOLHPC]

Thank you Coco

It's funny because I read all the posts here but feel like a bit of a charlatan through lack of proper diagnosis. Although not on paper the Rheumy refers to my 'Lupus'

Looking back there was a point where my blood pressure was quite high and the Rheumy was up in arms about it, if it doesn't come down we will have to give you meds! I told her it's not usually high. But after being so badly treated over the years I have a bit of a phobia of Drs. I can feel my stress levels go through the roof. That feeling where you psyche yourself up to do battle. At the time she wanted to reduce my steroids - I can tell you now 10mg of steroids have given me some of my life back. I realise looking back that high blood pressure and kidney function are linked. Now she is happy to keep me on the steroids, no more talk of getting them down. Funny that! In the grand scheme of things she is quite pleasant.

Needless to say I have a lot of questions and have an appointment booked with this nice Dr. I shall ask to see a Nephrologist. I have also ordered a Kidney diet book as this is the only way to keep them as well as I can.

It has taken a little while to sink in bit I have my battle armour ready again.

Well wishes xx

[EOLHPC in reply to Jo883]

Go for it 🍀👍🍀👍🍀👍😘

[PMRpro]

You might find this interesting and helpful

renal.org/information-resou...

I imagine every blood test your GP has done in the last 2 years has come back with an eGFR, an electronically calculated estimate of glomerular filtration rate - and if it was at the top end of the range the GP was just "observing", There has been a lot of dispute about these figures - the experts never wanted them handed to GPs/non-renal specialists on the grounds they wouldn't know what to do with them. All too often they tell patients with level 2 they have renal disease when it is normal ageing - and as you have experienced, ignore the patient they should be monitoring.

[Jo883 in reply to PMRpro]

Thank you for your reply PMRpro

I was thinking to myself quite recently that I was quite lucky as I didn't have any organ involvement!! I'm still trying to get my head around it and I have been having a little read my eGFR on my blood tests came back with this is equivalent to stage 3 CKD 2 years ago and I pulled my Rheumy on it, dipped my wee which was fine and that was it, nothing more said, they have been out of range consistently- I don't get why this was not mentioned. My Rheumy would get blood tests up on the screen and Flick through ever so quickly, too quickly for me to catch a glimpse but not so quickly that I couldn't see a few illuminated out of reference green results. I trusted her to tell me the necessary. my Dr said I was quite young to have this.

I will keep an open mind. But I shall ask to see a Kidney specialist so I can take matters into my own hands.

Well wishes xx

[PMRpro in reply to Jo883]

It really does back up our right to see and have copies of all results - where I live in Italy it isn't an issue: we are almost expected to collect our own results, not just blood tests but CTs MRIs and x-rays etc which can be burned onto a DVD for 5 euros to take away! A very different world to the UK - and one which does tend to mean that doctors don't ignore such things. They aren't perfect - but it is better.

Hopefully now you can access a better level of care

[Footygirl in reply to PMRpro]

Guru. Pick up my jaw from the floor. What a service! Dya want a lodger? 😎😎😀😀😀😂😂😂😂😂😂😂😂😂😂😂

Seriously, I envy your medical care. Embrace it and love it!

Seriously green

🐸🐸🐸🐸🐸🐸🐸🐸🐸🐸🐸

⚽️

Ps and the right to a specialist opinion without being discharged for doing it! X

[PMRpro in reply to Footygirl]

He-he! Just working on being able to stay there post-Brexit - the husband is fine, he's got an Italian pension already and healthcare is part of that, I will only have one when I'm 67 - so the longer Brexit takes the better...

[Jo883 in reply to PMRpro]

Thank you! And that is awesome care. I shall get back on it. it has made me doubt a few things x

[Footygirl]

Hi Jo

As Bc said, you nailed our experiences. Spot on. Depressing isnt it? This is ssooo familiar. I would venture to say, given govt pressure etc etc, being kind, that most of these people we see are just plain lazy people. To go into a profession where its very nature is to be curious. To want to solve unexplained results. To want to see your patient as well as can be. And not bother? No words.

Now that this has been brought to light, I hope your doc has requested an early appointment for you to go and discuss this long standing problem that has not been followed up.

I am just so cynical now. I take NO-ONES WORD at face value. I want proof, referrals tests to prove or disprove my symptoms dont mean yet another auto immune disease.

Good luck. We truly are our only advocates, you cannot rely on anyone to watch your back, medically speaking. Unless you are one of the few who have docs who are interested true detectives as Bc said.

Gird thy loins, take your diary, demand past results and stand your corner and insist on relevant, fast referral to your next specialist.

We are with you. Let us know how you get on.

Hugs

⚽️

[Jo883 in reply to Footygirl]

Thank you for your reply Footygirl

Well thankfully this Dr has brought it to light otherwise it may of been worse! I can stand my ground when I need to, I hate the stress and the feeling of going into battle when you have to see a Dr to be heard, taken seriously and actually being well enough to remember everything important. Although I do make lists of questions. It's like unraveling spaghetti!! But I think you are right. I had been making sure I got all the copies of my blood tests up until the last year probably, and all because my Drs is in another village and my repeat prescriptions are beamed through to chemist. I assumed wrongly that my Rheumy would tell me if there was anything to be concerned about!! Lol! I won't make that mistake again!! I will ask to be referred to a Nephrologist, Drs is booked and I'm waiting for urine test results.

Thank you for taking the time to reply. I don't moan much but I do feel a little bit shocked still. Truth is, only others in the same boat can really empathise. I keep a lid on it most the time. Keep on moving forward.

Well wishes xx

[Footygirl in reply to Jo883]

As you say, we do keep it in a lot of the time but you found exactly the right place. We all have a vent now and then. I had one this morning re my Rheumy. It does seem to go on and on. Your bright attitude is an inspiration. I wish I could be more upbeat but I think at times Im just plain beat lol😀😀😂😂

And yes we all do understand.

It is so hard sometimes.

Another battle on Friday deep breath!

Best wishes, go gettum girl!

Love

⚽️

[Hidden]

Hi Jo883. Firstly I'm shocked for you about not being told about the stage 3 CKD - that is terrible! But hopefully now this has been revealed you will be able to monitor your own blood results as well and take no nonsense if anyone is obstructive about this.

Also regarding your comment about feeling bogus being here - this is really so far from being the case.

I don't have Lupus, and have only just had confirmation that I do have a connective tissue disease, Sjogren's Syndrome. Before that my only diagnosis was made five years ago and this was seronegative RA. But I never felt I belonged to the RA HU community because people were so often talking about drugs I am not allowed to take or about joint deformities and erosions I have never suffered - and even my arthritis isn't that bad now. Whereas my neuro symptoms are more Lupus like and I have made such lovely, wise friends here. So I mostly come here now because the thing about Lupus is that no one person's disease is exactly the same as another's. There is nearly always someone who has experienced something similar.

Also there are lots of people here with various other seropositive and seronegative presentations of other connective tissue diseases - or overlap diseases. So please keep comimg and let us know how you get on.

Twitchy

[Jo883 in reply to Hidden]

Wise words Twitchy! Thank you for replying

Its still sinking in at the moment, I was told about a month ago just before I went on my holiday's. I was a little stunned, as I was trying to convince the Dr that all my bloods were fine, as that is what the Rheumatologist had told me. She concentrated on my cholesterol, blood sugars told me how pleased she was. The Dr brought all the results up on the screen over a 2 plus year period to show me, I wonder if the Dr thought I knew already, I do get copies of the letters that the Rhuemy sends to my Drs but they are usually quite vague and nothing has ever been written to him about my Kidney's that I have ever got a copy of! So I went off on holiday to have a think about it all, as now I have lots of questions. I have no doubt the Dr will give me copies of any blood test results that I am missing as he's said it was my right to have them. It will be awhile before I see Rheumatologist now, March next year. I'm glad you are finally getting somewhere with your diagnosis, it is such a long drawn out battle at time's but if you know what you are up against and you feel it fits I guess your half way to getting the right help and Meds you need. So for that I am happy for you xx I too have quite debilitating Neuro symptoms that have never been fully explained but are quite debilitating. They usually flare up with everything else so it's all interconnected somehow. It's time to speak to this lovely Dr and fire a few questions at him and see what he has to say. Meanwhile I will try to do a bit more research so I have a better understanding of everything. Take care Twitchy - well wishes xx

[Hidden in reply to Jo883]

I can relate to your infuriation and bewilderment even though, so far, I don't have CKD.

No one ever told me I have microscopic haematuria or hypertension or has every bothered to monitor my very large, irregular renal cyst.

When I've asked them to they just say that it's something that probably needs monitoring but then no one actually monitors it. I've never had a dexa scan despite having taken steroids for very long periods of my life.

So I have learned to at least get copies of my blood results regularly and letters too now. Having a few long term conditions seems to mean it's often a case of DIY in order to make sure nothing important slips through the net.

But I've been moving around and rheumy teams have changed three times this year so I think this is just the only way of having any kind of continuity, spotting any irregularities which new doctors will inevitably fail to pick up on otherwise.

Mycophenolate might be worth mentioning to your doctors as it would perhaps help slow down or even stop your CKD from progressing while modifying your connective tissue disease? Twitchy x

[Jo883 in reply to Hidden]

Twitchy

It's funny you mention renal cysts, I am having my hormones checked but the blood test has to be done on the exact day of the month, and so far this has been on the weekends so despite trying I've not managed to have the blood tests as no plebotanists work at the weekends. Anyway my Rheumy slipped up a bit as she said to me your Dr wants you to have these tests done as he thinks you have polycystic kidney disease. When I said pardon, she corrected herself and said polycystic ovary syndrome, I thought that was quite odd as this doesn't fit me at all, but maybe she inadvertently tripped up, is what I'm now thinking...(?!?)

I have to say I'm surprised they have never given you a dexa scan - I'm due my second next year I think the last one was a year ago, maybe a year and a half tops though. This is the very least they should be doing as you are on Steroids.

I will have a look into Mycopenolate - it is not a drug I am familiar with. But I will certainly have a read up. So thank you for that

I'm not even sure how quickly this progress's but I did get all my blood tests out the other day, from the very first Rheumy appt in 2012 and they seemed ok then, but I'm going to double check that now and chart the decline if I can.

Best wishes xx

[Hidden in reply to Jo883]

Renal cysts are dead common I'm told but a nephrologist told me last year that mine was very large and irregular so should be monitored yearly for changes. I will try to ask rheumy tomorrow - it's on my list!

Best of luck with everything - lots of people here are on Mycophonlate including severel with seronegative Lupus and UCTD. Xx

[Jo883 in reply to Hidden]

Many thanks Twitchy x