I was diagnosed with this in January this year. To be honest I'm feeling a little better but still very anxious. I have had Type1 diabetes for 48 years, and one of my concerns is kidney disease, I've worked very hard to control my sugars levels. I also have autoimmune hypothyroidism
I just feel very overwhelmed by it all. Lost. Isolated. Unmotivated. Like my whole life has come to an end. Doctors contradictions are upsetting and confusing.
Anyone else been in a similar situation?
Any advice would be much appreciated.
Written by
Pawsedagain
To view profiles and participate in discussions please or .
We all feel that way at some point,your life is very valuable,you know your body better than your doctors,breathe,keep positive,you are not alone. "Imagination is half the disease, tranquility is half the remedy, and patience is the half beginning of the cure" Avicenna.
Welcome to our community. Here you will find a great group of compassionate and supportive people.
As far as your feeling lost , isolated and anxious are very normal. When any of us heard the words kidney disease our hearts skipped a beat as well.
I can well imagine that having diabetes from a young age, autoimmune thyroid issues and now Membraneous Nephropathy would be over whelming.
The good thing is that although each disorder has no cure, they can be controlled with medication diet and monitoring.
It is all a process and a few life style changes- remember that.
Although I am not diabetic, I have had Hashimotos Hypo Thyroidosis for years. I am sure that like you it plays games on me and I need a medication adjustment every so often.
In 2017, after a biopsy, it was confirmed that I have Idiopathic Primary Membraneous Nephropathy.
So, I know the feelings of being overwhelmed as I was totally " A Sympyomatic" so this came as a shock and fright to both myself and my family.
I am glad now that I asked my then endocrinologist to please run a glucose test and A1C for me annually as my brother is a severe type 2 insulin diabetic as well as a family history there.
Interestingly, my then PCP who has since retired, monitored only my creatinine level - I am not diabetic and he told me that it was not a part of routine physicals unless you are diabetic or over a certain age which I was not.
It was then that protein was discovered in my urine and after a repeat test, I was referred to a nephrologist and the rest is history.
In addition to being on insulin for your diabetes, and medication for your thyroid, you haven't mentioned a statin nor blood pressure medication. Is your BP normal?
Generally nephrologists put their patients on either Lisinopril, which belongs to a class of drugs known as an ACE inhibitor or Losartan which is angiotensin receptor blockers (ARBs).
They are the first line of drugs used to try to reduce protein spilling and also to protect the kidneys. Has this been discussed with you?
Let me introduce you to Drugs.com. Either Google it or download the APP. It provides a great explanation, side effects of drugs and interactions.
If you use the APP there is a place where you can lists all of your meds and it will alert you to any interactions be they mild, moderate or severe.
As a MN patient, I try to avoid foods which yield inflammation; sugar is one of them and foods which turn to glucose in your system.
Stress is another factor that can initiate an autoimmune response. We all have it, but I try to keep it at bay as best I can.
My thoughts are to ask your doctor for a referral to a renal dietician who will put together a list of foods which are both appetizing and will tend to both the diabetes and kidneys. This will be based on your labs.
As a kidney patient, I eat a kidney- friendly diet. Low sodium ( 1200- 2000mg per day) low protein; avoiding red meats and watch my potassium and phosphorous intakes.
I eat a lot of fresh or fresh frozen vegetables which I steam or roast with no sodium spices. I also eat beans and a lot of hummus as well as Fat Free Greek Yogurt with Chia Seeds, light wheat breads and Cream of Wheat ( Yellow box) as it has a lot of iron in it and fresh fruits.
This is just me. What works for one person, may not work for another.
I would put together a medical team who listens to you, communicates with you well and in basic terms, answers your questions and is willing to consult with the other members of your team so that everyone is on the same page; even if they are not with the same group.
Your doctor should be your first line of communication.
If you feel that you are not getting this, don't hesitate to seek another opinion and someone who will. It is done all of the time.
My nephrologist is not the first. Not simple but you are entitled to the best care.
Another thought that I have is I would keep track of your labs. I print a copy of the most recent before going into an appointment and add results from prior tests to it.
I check off any area which flags high or low as based on the ranges next to your results and ask. This way you don't leave the office feeling bewildered.
I also take a notebook and jot down possible questions and bullet point the discussion. If you have a family member who can scribe for you, all the better.
Membraneous Nephropathy is a bit different than CKD so your treatment plan will be different. Go one day at a time.
I am going send you a couple of links on MN and diet.
Ask your doctor questions as to where you are and his/her plan.
Please feel free to reach out at any time. If you prefer to send me a private message as I understand and would be happy to support you.
Thank you for your reply I am going to follow up on those links. I was not on any other medication as my blood pressure was on the low side. My endocrinologist was reluctant to give me any until protein started showing in my urine shortly before the nephrotic syndrome became apparent I was prescribed IsbetI was then diagnosed with this autoimmune/ primary /idiopathic membranous nephropathy. I had concerns about my kidneys but was never previously tested for anything. Because I think I am not overweight, have good blood pressure and manage my diabetes well its always been difficult for doctors to listen and to look beyond the diabetes and thyroid.
Of course I have a chronic disease therefore I must just be anxious because of that. That's the assumption.
To manage my diabetes I am on low carb diet. I avoid high gi foods I eat a lot of green vegetables and a mixture of pulses. I eat fish about twice per week. And some poultry or meat.
After 2 rituximab infusions and the daily tacrolimus, aspirin, vitamin d and atorvastin there have been improvements. Which is something to be positive about. I am just exhausted. I suppose its just coming to terms with this.
Thank you again I will follow up on your recommendations.
Please let me know how you are doing. One day at a time.
Your diet is great and you are attentive to what you need.
Due to the CKD the proteinuria is there but to find a glomerular disorder on top of it has to be frustrating. So I can see why you feel as you do.
Communicate with the members of your medical team. Let them know how you are feeling as they are your first line of communication. If they are dismissive, seek another opinion.
You are juggling many balls which takes tenacity as well as courage.
This is a journey and process. Even when discouraged, know that the balance takes time..
Please continue to reach out as we will always reach back.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A very fit healthy person diagnosed IgA nephropathy out of blue ! 
Newly Dx IGA Nephropathy 
FNP of a husband with diabetic nephropathy
New Treatment for IGA Nephropathy 
