frustrated with kidney dr: I am stage... - Early CKD Support

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frustrated with kidney dr

boycie profile image
13 Replies

I am stage 4 and visited dr yesterday, I told him my symptoms, low blood presure constant muscle weakness, constant fatigue, and weight loss due to bad taste in mouth, he is still insisting that these symptoms have nothing to do with kidneys ( I only have one) it really is upsetting, does anyone have the same symptoms and dr who insists that none of symptoms are caused by ckd. I really do not want to go and see him anymore as it is so depressing.

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boycie profile image
boycie
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13 Replies
bowler profile image
bowler

Have you, or do you see a kidney specialist ? and has your GFR been tested recently.?

I think low blood pressure is better for you than high.

boycie profile image
boycie in reply tobowler

Hi I have gfr 22-28 I do have a kidney specialist it was he who told me none of my symptoms were due to CKD , although it doesn't make any difference I do only have 1kidney the other one is dead

boycie profile image
boycie

Hi yes I do have kidney specialist it was he who said my symptoms were nothing to do with kidneys. My gfr is between 22-28.

bowler profile image
bowler in reply toboycie

Thanks for your reply, when you said you saw a Dr. I assumed it was your GP. Maybe you should ask to see a diffferent specialist for a second opinion

jillab profile image
jillab

Hello Boycie, I'm fairly new on here, but I do look in a lot, I too have only 1 kidney, other one taken out last year as it was useless, I'm sure a lot of so called specialists have no idea of all the side effects that a lot of us go through, I was told for 40 odd years that I had I.B.S in fact that's how my bad kidney was found, by my G.P. sending me to have a colonoscopy to prove to me I had IBS,well to cut a very long story short it didn't and showed up the kidney instead, and I must say that after having the left one removed I felt a lot better even though I only have 25% use of the remaining one, that is till this December when I had pains again, G.P. again saying it was IBS but again cutting a long story short I was taken into hospital boxing day, after lots of different X.Ray and investigations they now say I have Diverticulitis and after 6 days was sent home on antibiotics to wait for it to calm down and I will be called back in for a barium enema, (not looking forward to that). to see if any polyps need to be removed, and they also found a cyst on my left ovary which again I will have to have checked again to see if an op. will be needed. Hence this is why I have no trust left in Dr.s opinions. Sorry Boycie having a moan of my own when you were asking for help, but at least you know you are not on your own, but I am lucky in the fact that I have a very good kidney specialist who puts things to you plain and straight and if you don't understand will explain until you do, but he pulls no punches either and tells you straight if he thinks you aren't helping yourself , but I prefer that. Where abouts are you, I'm in Weston super Mare and the specialist comes from Bristol, if you are anywhere near I could gie you his name. Hope you feel better soon. Jill.B.

essex48 profile image
essex48

Hi, I'm stage 5 CKD, gfr11, I go to renal. Unit every 8 weeks and am asked how I'm feeling and when I say unwell and what problems I'm having I am told its nothing to do with my kidneys, it does make you feel very depressed when you feel your not believed, try chatting with your renal nurse who in my case are more understanding and willing to listen when your feeling unwell and down, good luck and hope you feel better.

phillen profile image
phillen

that is so annoying you need a change of gp & specialist at stage 4 my hubby had loads of symptoms itching tiredness etcexactly the same as you its disgusting when they can say these things to you when he was stage 4 going into 5 he could barely do anything he used to love hill walking he struggled to even walk a few yards & fell to sleep as soon as he sat down in stage 5 before dialysis he could barely get out the house had no energy terrible itching although he still has no energy & itching subsided (mainly due to phosphate binders) he is much better & manages daily life better he still can't do any walking through tiredness so don't let them fob you of swop gps & consultants! go on to NKF website or BKP & you will see that you do get these symptoms

Mgt8 profile image
Mgt8

Hello, I'm at stage 4, gfr 23, creatin 199, and I too went through a stage of my doctor not being convinced of my CKD symptoms. It does nothing for your general well being. Changed my doctor and even though I am more ill now than before, having a doctor who is on my side improves my feeling of well being as I know everything is being done that can be done.

It sounds from your symptoms, that they could each be atributed to CKD. My advice is to change your doctor.

As my new doctor said to me, "I'm the doctor, but its your body."

Good luck with it, hope it turns out well for you.

boycie profile image
boycie

Thank you for your help . I have tried to change kidney Dr but gp says he is the only one near me, as I live not too far from London I have tried to see a kidneydr there, gp won't refer me there either. I will try again.

wingsofadove profile image
wingsofadove

When I suffered a severe upper chest infection last autumn I was prescribed clarithromycin. A few days into the treatment I was so ill that I spoke to my doc on the phone and he told me to stop taking it. When I told him the effects it was also having on my bladder and urine he said that Clarithromycin was not the cause. When I finally had lab tests I was summoned to the surgery for consultation, during which my new doc told me that she must be very careful with medication from now on and clarithromycin was definitely out, and she had made a note to that effect on my file. My body had already told me never to touch the stuff again. I'm sorry your doctor seems to be of little help, one of the main things CKD patients need is reassurance. I have most of your symptoms and the attitude until recently has been quite casual. All the best, hope the depression lifts, Boycie, I understand that too and it makes you so miserable.

angelasutton51 profile image
angelasutton51

Hello I am stage 3b ckd I have seen to specialist my ow go and a Dr in A&E and none of them say my symptoms are down to ckd they are blinkered by the text book hope you get sorted all the best Angela

judystuddard profile image
judystuddard

Yes, I have that terrible taste in my mouth, low blood pressure, weak as a kitten some days,itching all over, and smaller amount of urine!!!!

buddygramma profile image
buddygramma

Well, I too, have CKD stage 3b, I have great Blood Pressure, they put me on oxygen at night. I amd 76 I feel great, I would love to lose another 20 lbs. Had 4 different cancers, right kidney removed. I do not have any of those symptoms that you have. I was tired all the time because of the low oxygen at night. Ask for that simple test. Good luck XXOO

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