My primary care doctor doesn't think I need to see a nephrologist My eGFR is 50. I have restless legs, bruising, and get hives when I ingest any type of medication, prescribed or over the counter. I'm tired, mostly because I have to get up to urinate 3 or 4 times a night. Do you think I need to see a nephrologist? If so, what can they do for me?
Do I need to see a specialist?: My primary... - Kidney Disease
Do I need to see a specialist?
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Barbee44
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40 Replies
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If it's YOUR health we are talking about why are you only listening to a PCP? Not only would I see a nephrologist but I'd also see a Urologist. They are specialists because they have more detailed knowledge about specific conditions. Don't put up with any physician who won't help you get to the bottom of your health concerns. Contact a Nephrologist about your CKD and a Urologist about the frequent wake-ups for urinating at night. Your Care Team for your health should be made up of many types of doctors. On mine, I have a PCP, Nephrologist, Urologist, Cardiologist, Optometrist, Retinal Specialist, Podiatrist, Dentist, and a Renal Dietitian. They work for me and with me under my terms or they become ex-members on my Care Team. You obtain the best advice from them and you make the final decision. Remember, it's your life, your health, and your decision.
Barbee44• in reply to
Great advice. My problem is they all want to prescribe medications and I suddenly (just this past year) have broken out in hives, restless legs, or bruising from almost all medications. I can tolerate my BP pills, a water pill but that's about all. Can't tolerate statins at all and my chloresterol is high.
• in reply toBarbee44
Who (specialists) is prescribing what exactly? Yes, some doctors do believe in a pill for every condition. That's why you have to be in charge of your Care Team. Each doctor on my team has the name and contact information of everyone else on the team. They also get an updated list of meds and dosages at every appointment. Yet, it is still up to me at every visit to remind them of all my health issues.
It isn't wise to suffer thru these health issues without consulting others regarding non-med ways to deal with the problems. Sometimes a pill is necessary, but only for a short term.
Hi Barbee44,
When you go to your doctor, do they review EACH time your medication list. Ask for that and make sure they explain why you are taking them if you are unsure. Then make sure your doctor is aware of the side effects you're having. If there is a side effect to have, then I usually get it. But I don't tolerate it. My doctors, I have a team, work to find something that does work. For example, I went through over 7 biologics (very strong medication for PsA) in three years until I finally found one that worked.
Also, what Mr. Kidney said is correct. You wouldn't keep an employee who is not working for you so why keep a doctor who isn't either?
As far as frequent urination at night, there are many things that can cause that and it can be as serious as diabetes and as simple as drinking too much water in the evening. Also certain medications will also do that. Its a puzzle which you and your doctor/health team need to put all the pieces together to see how they fit.
Hi Barbee,
Honestly, I agree with both of these terrific people.
I would make a point of reviewing your current medication list, including any supplements, vitamins and something as simple as a tbsp. of mineral oil with your doctors at each appointment; particularly your PCP who should be hearing from each specialist at least by e-mail or fax after a visit. I agree that there must be team work as you are a whole person.
If you are offered a medication, ask the purpose, directions and reactions when prescribed. Take notes. These people are paid well to answer your questions. You can refuse it and ask for an alternative as well.
A doctor who is not listening to me; ignoring my concerns or is not thorough is soon history as they are not properly doing their job. Even one who I saw for 14 years and lost his shelf life so to say.
I had a severe reaction to statin drugs. The prescribing endocrinologist refused to believe me, saying he has never heard of such a thing. My PCP saw the physical effects of this drug and deemed it an allergy. She was willing to look at the reaction printout from Drugs.com that I brought to her, in severe pain. I fired the endocrinologist.
Drugs.com. is an excellent site which not only describes the medication, but will tell you severe, moderate and mild drug interactions and side effects. It is now available as an APP on your phone. Your pharmacist is also another resource.
At this point, seeing a nephrologist is a good idea as if for no other reason putting your mind at ease about your frequent urination. As Bassetmommer said it could be something very simple, but if you don't investigate it, you won't know.
You know your own body and must advocate for your own health.
Just know that one of us is always here to support.
Reach out at anytime!
I fill out their form... not sure if they look at it. Most of my doctors are in the same group... it's huge and they have their own labs and xrays. It's all very convenient, but their doctors aren't all that good. Most are foreign...not that I have anything against foreign docs, but I fear I won't be able to understand them when they give me important information. It's happened before.
Barbee44• in reply to
My doctor refuses to refer me to a nephrologist. My insurance provider said I didn't need a referral. So, I called a good nephrologist to make an appt. and they said without a doctor's referral, they can't see me. So where does that leave me? I don't get another blood test until July! I feel lost and neglected. Why would they wait until the disease gets worse? I would think nipping it in the bud would be the way to go. I don't know if I should be eating differently or what. I'm stage 3 GRF at 50. Previously it was 56, then 54 and now 50.
I called a new Primary Care doc they took down all my information and then the secretary said it had to be approved my the doctor before I could get an appt. Who knows how long that will take. I feel like I'm being held hostage.
It's 3 am and I'm so upset I can't sleep.
• in reply toBarbee44
Not sure where you live but it sounds like the UK. I say that because they appear to have a very restrictive National Health system (based on comments from others on this forum that live here). If that is incorrect and you do live in the USA then you must have health insurance that is equally restrictive. Either way, I've got some suggestions for you.
In the USA, go to davita.com and look for the link to register for a free, 90-minute Kidney Smart class held in your area. It is taught by a kidney specialist and will provide you with a wealth of information on CKD. If you live outside the USA go to kidneyschool.org and you'll find a group of 16 modules on CKD. These will be informative and provide you with a lot of information on being proactive in dealing with CKD.
Additionally, on the DaVita website, there is a tab for RECIPES. Look at the many offerings for you to begin a kidney-friendly meal plan. You need to cut back on many things that are not beneficial to you with CKD. If you don't have copies of your last years worth of blood and urine labs, go to the doctors' office that took the labs and ask for hard copies of the lab values. You need to cut way back on sodium for starters and cut out smoking and cut way back on alcohol if you smoke or drink.
Attend the class or watch the modules and know that it isn't going to be easy without a physicians guidance but you can do this.
I'm sure that you'll have a lot of questions on things as you move through this process, but the good news is that there are many knowledgeable folks here that can help you through the more difficult aspects of CKD. You can slow the progression of CKD by being proactive and the best way is to take control of it as soon as you can. It's sad that the doctor isn't supportive. They all take an oath that states, "First, do no harm." Your insurance should also be supportive of seeing a specialist and learning all you need to do to hold off dialysis and ESRD. Best of luck.
Barbee44• in reply to
Going there today. I'm USA.
RonaldoResuelto• in reply to
Good info. There's a class near me coming up. Thanks.
Barbee44• in reply to
Oh, guess what? I was searching Kidney things on the DeVita site you gave me, lo and behold there's a Kidney Smart Class... you put in your zip code and it finds one near you. Would you believe the very group my Primary Care (who doesn't care), never referred me to this and it is in the very same group as she's in!!!!!!! She's history. My husband and I are going on Jan. 31st. Thank you, Mr. Kidney. I'll let you know how it went.
Time for a new GP. If the current one leaves everything so confused and cryptic, they may be way over their head - or lazy (which is worse). The problem with too many specialists is too many people who believe they are always right. You need someone who just can look at the big picture and think. Good luck.
Yes, I. Believe you should see a Nephrologist.
You have her pegged right. My health insurance is sending me a list of nephrologists and their top primary care docs.
Hi,
Everyone has confirmed that you need specialists. Some insurance companies reward PCPs for doing fewer referrals.
Also, for the sake of your body and to lower your cholesterol kindly, combine resveratrol, garlic, and slow release niacin while you wean off Lipitor or whatever Rx you're taking.
I'm at 45 gfr and that's a serious number. I'm careful to follow the kidneys friendly diet and avoid all NSAIDS.
• in reply toDangermom13
With all due respect, don't suggest mixing meds with any other supplements without physicians knowledge and approval. What worked for you, hopefully with doctors approval, may not work for someone else and it's irresponsible to offer it as a solution for someone else without knowing their history.
It's helpful to know. I've written it down and when I get to see a nephrologist I'll suggest it. Thank you.
I totally agree with Mr Kidney and the others. It is your life and don't underestimate the importance and impact things like diet and lifestyle in the health of your kidneys and a good nephrologist and renal dietician can really help. I would certainly heed all this advice and go and start building up that team that Mr Kidney has spoken about. I talk from experience as I was diagnosed with CKD at 18% four years ago so it was already too late for me and I have had very poor support in the UK from lacklustre doctors whom I initially trusted with my best interests. I was given 3 to 6 months by the doctors before needing dialysis yet through my own research and lifestyle modifications I was able to stretch that to 4 years. Now I am at 10% and have to start dialysis shortly. I am convinced that with the right medical support that the progression of my kidney disease could have been slowed down even further and I should have sort out better doctors and insisted on seeing a dietician. With your eGFR of 50% if you get hold of this now there is every chance that you can remain stable but don't delay.
Thank you, and God bless you! I'll say a prayer tonight for you. I am a strong believer in prayer and I think it helped me find this site which has helped me to overcome my panic.
Hello Barbee44, I see from your post that you take a diuretic tablet, and wonder if that could be the cause of your having to get to the bathroom 3 or 4 times a night. I had that experience 30 years ago when a diuretic was prescribed, and I found I was getting up only twice a night and found it v. exhausting, so I can sympathise with your situation.
I would go back to whoever prescribed the water tablet and tell him/her of your problem so they can prescribe something else (in my case it was a first step to trying to lower my high blood pressure figures, but, after my experience, this was quickly, and successfully, changed to a low dose blood pressure tablet). We all react to drugs in different ways and any good doctor, whatever their speciality, should recognise this and prescribe something more suitable for you. Good luck - Curleytop1
It was prescribed to help lower my BP and because my feet and legs swelled so bad in the summer. I'm afraid to drink too much water and stop drinking about 6 pm. But it doesn't help. I don't mind getting up but after the 4 am one, I can't get back to sleep. So I'm averaging about 4 hr sleep a night. Yawn.
Part of the problem is that specialists wont see a patient without a referral from a regular doc and the regular doc wont give one for whatever obscure reason. The only solution then is to find a new regular doc who will make a referral.
I asked to see an immunologist since I'm allergic to all the meds prescribed. She said I should go back to my spinal doctor and ask for another med for pain and if I had a reaction again she'd refer me to one. I've already tried 6 of types of pain pills, and I told her that on my last visit. My health insurance told me Medicare doesn't need a referral. I can see any specialist I want. She's history.
I had statin problems as well and my doctor changed to a newer statin that is only 4 milligrams. I can tolerate that one and the doctor will know the name of the drug.
She prescribed a nonstatin drug and I got restless legs x 10. I get 3 reactions from almost all medications: hives, restless legs, and bruising. They tried me on Parkinson's medication for the restless legs, but they made me sick. I can't win.
Well I wish you the best with any medications then.
Hi Barbee44, I have just been re-reading your post about the side effects you suffer from medications, and if you have not yet had any improvement, I wonder if you would get some ideas from just looking it up by putting 'how to deal with the side effects of (insert the name of your particular medication here)' into your browser? I just did this and lots of sites came up, obviously some sites and advice will be unsuitable but it might be possible to find something reliable which works. Another idea would be to talk to whoever supplies your medications - in the UK we have very knowledgeable pharmacists who we can consult but I am not sure if this is the case in USA. Hope these ideas will help you - Curleytop1.
I saw my new doctor and just love him. He ordered new bloods and my GFR went from 50 to 51 by just cutting salt and fried foods from my diet. He even send me this message: Hi Mrs Goss,
Your blood work came back. Kidney function did improve with GFR going up to 51.
Everything else looks okay, even the things that are slightly off. Let me know if you have any questions. Your potassium is okay and lets have you continue to hold it. I know you werent tolerating the pill anyway.
In terms of seeing a nephrologist, that is up to you. It couldnt hurt just to see dr. Alex just to make sure nothing else is going on.
Let me know if you have any questions
-Dr. ======
He listens.... he doesn't rush you and make you feel he's anxious to get out of the room like some doctors.
I'm fairly use it's an allergic reaction, at least the hives are. I've gone for 3 wks without taking a thing other than my BP med and no hives. My restless legs are ongoing, but worsen with medications. I'm see a new doctor on the 11th. He has DO after his name and I think he might be perfect. “The osteopathic philosophy involves treating the mind, the body, and the spirit. It’s a more holistic approach,” says Michael Jonesco, DO, of Wexner Medical Center at Ohio State University in Columbus. “For the patient, the osteopathic approach is less about prescribing medications and medical procedures and more on the body trying to heal itself.”
Hi Barbee44, Glad to see you will be seeing a new doctor in a couple of days' time, I am in the same position as a new GP, I have not met before at my Surgery, ordered a new (for me) blood pressure test, which lasted for 24 hours. The bp. machine is carried on one's body and the cuff is strapped to an arm in the usual way, and the machine automatically takes the bp. reading every 30 minutes, then these figures are averaged out to get a more accurate idea of what is happening to the bp. She does seem more 'clued up' about CKD than my previous GP so I am hoping to get more insight into what is happening!
Please let us know how you get on at your appointment and I will do the same with mine.
Good luck - Curleytop1.
I will!
My appt is Monday.
UPDATE: I saw my new doctor and really like him a lot. He listens. He explained stage 3 CKD thoroughly. I understand it so much better. He also referred me to a nephrologist who I see tomorrow. After one week on the Davita kidney diet my GFR went from 50 to 51. I don't miss the foods I can no longer have. I found Skinny Pops popcorn and a lot of foods on the good food list. I feel so much better. Thank you all for your support. It really helps to belong to a group like this. No one else understands.
Cholesterol is 248 and I can't tolerate statins. I get restless legs x 10.
Was it you who recommended magnesium citrate? I can't find the post. If so, I tried it last night and slept like a baby. Thanks.
My triglycerides are good. I'll try it.
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