I’m wondering if I should be concerned, I’m 38 and my most recent egfr was 71 and my creatinine just slightly raised. My egfr has continued to decline for quite a few years but my creatinine hasn’t been out of range before. I have Sjogrens Syndrome, Anti- phospholipid syndrome and other autoimmune diseases. Also, I have recently tested positive for C1q antibodies that appears to be linked to lupus nephritis.
Am I worrying over nothing or should I be pursuing other tests etc?
Any help is appreciated ☺️
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EllaRuby
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Welcome to a great and supportive community; you are among friends.
Your feelings of concern are absolutely normal especially when you are seeing what you feel is a decline in your test results.
My thoughts, at this point are to print out your labs; adding in the last two results next to your present.
Check off areas of concern or anything which reflect a decline and note that which is stable.
List any questions and concerns that you have and make an appointment with your nephrologist, or the ordering doctor and discuss your concerns as well as your health action plan going forward to keep your conditions as stable as possible.
This will include testing, medication, diet, etc as your doctor should be your first line of communication as he/ she knows both you and your case best.
Hearing what your doctor has to say and negotiating any further tests if you have a debate is a gift that you will give yourself; peace of mind.
It's all a process!
Please reach out again and let us know what your doctor has to say. I promise that someone will always reach back.
Thank you for getting back to me, all that info is v helpful. It was a rheumatologist that ordered these tests and am seeing them in June.
I want to be prepared before I see them and to know if I should be asking for more tests or not as in my experience doctors have let me down and it’s me that needs to educate myself. I don’t want to push for anything if these results are nothing to worry about.
The fact that for quite a few years now my eGFR has been in the stage 2 ckd category, the number has been declining and no doctor has mentioned it makes me think I’m worrying over nothing.
Can people have an eGFR of 71 at 38 years old and slightly raised creatinine and it be ok for a doctor to say this is ok and nothing to worry about, there is no need to do anything?
You have every right to ask questions as you are the patient and paying the doctor well to treat your condition.
Unfortunately, things have come down to our being advocates for our own health as many doctors are way too dismissive of test results until they plummet.
I have dealt with this myself and presently am with an osteo - endocrinologist from a metro teaching hospital who I have seen for years. My PCP and I feel that it is time for a change. It's not easy.
I feel that a doctor should be willing to listen to you and discuss tests and options with you, stay on top of your personal history and family history as well as communicate clearly with you in basic layman's terms and be willing to consult with the other members of your medical team or their services need to be terminated in lieu of someone who will.
If your egfr is declining and there is a disconnect between that and your creatinine level, than I would certainly question it.
Have you seen a nephrologist for the kidney issues?
That might be a thought as they will run specialized tests to assess your case and give you a better feel for what direction that is going and relieve your concerns. Yes, you are listed as stage 2, which is great, but what is being done to prevent progression?
How are your other labs such as BUN, Anion Gap, as well your electrolytes such as sodium, potassium, phosphorous, calcium, and your CBC? How is your albumin level, as well as your ACR ( albumin-creatinine ratio which indicates possible protein spilling? All part of the big picture.
You can also ask about a list of food choices and a referral to a dietician who will look at your labs and put together a list of food choices which will be appetizing, nutritious and address all of your medical conditions.
Give it some thought as you have time to put the plan into action before your June appointment.
I know that it is a nuisance but it will give you peace of mind and a stronger direction.
If you read anything, use Mayo Clinic, NephCure, Drugs.com which is excellent as they will show you possible reactions, low, moderate and high interactions. If you list your medications they will tell you if meds interact and to what level.
This will give you a basis for research as Dr. Google and some sites are not always the most accurate.
Please reach out again and I will do the same. Take a breath and think about another opinion.
Oh my Bet, thank you so much for getting back to me again and giving me so much useful information 🙏
I’m in the UK, so I doubt v much my GP would refer to a kidney specialist. I only know that my eGFR levels have deteriorated over the years as I requested a copy of my medical records. No doctor has mentioned this to me. It’s only that I again requested a copy of these recent labs that I now know my creatinine is raised also!
I have ordered a urine test privately, I think it’s creatinine/albumin ratio, should have the results by next week. No one has ever tested my urine.
I have persistently low urine calcium even though supplementing 3000mg a day. I have been diagnosed with secondary hyperparathyroidism causing osteomalacia in the past. I’m wondering now if my kidneys are the cause of this. All other bloods are ok but have had low blood and urine phosphate in the past too and no doctor could answer the cause of it.
I’m sorry you’re not getting the best treatment either and hope you find someone that can help you.
After ‘chatting’ with you I’m thinking it may be worth paying for a private consult with a nephrologist and getting his take on it.
My logic is I’m only 38 something must be causing my kidneys to be the equivalent of a 70 year old! And with my autoimmune history I would like to make sure they are not under attack!!
Hi Ella, Crazy day today - answered other message before I saw this response.
I feel badly that you had to get an ACR done as if the doctor was checking your creatinine and egfr, I wish that it had been covered and he/ she was thorough.
With the parathyroid issues and thyroid I am glad that you are looking into the best medical care.
Here we can obtain lab results on the patient portal and bring them to an appointment. I would get copies of your labs and bring a copy when you see your doctor or consultant.
I would definately look into a Nephrology consultant. Make sure that you are well hydrated prior to having your next set of labs drawn and do not do any strenuous exercise the day before as that " could" effect your egfr as "could" medications.
Remember that this is all a process which takes time to put in line.
Let me know what the process looks like. I will always respond.
EllaIf you are in the UK tests universally use MDRD for egfr. In the USA they tend to use CKD EPI calculations. MDRD underestimates egfr, CKD EPI is significantly more accurate for people with egfr a greater than 60. Use a calculator on the net and you may get a more accurate reflection if your egfr.
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