Proteinuria and Thyroid Both Rose Need some support.

[Bet117]

Many of you know me here as I have tried to provide you all support. Its my turn.

I have Membraneous Nephrology diagnosed formally in April of 2017 after first seeing a nephrologist in December.

My CAT with contrast and Cystoscopy were both normal.

I was also put on rouvastatin 5mg for cholesterol in September of 2016 and asked to be removed from it as it causes Proteinuria.

Reluctantly my endocrinologist took me off this in March with the intent to see if the rising protein would stable.

have been on Lisinopril since late February starting with 2.5 mg when the spilling increased to 1. the medication was increased to 2.5 am and pm. As I have normal to low normal blood pressure.

I was biopsied at 2 protein spilling with the rib issue. After the biopsy my endocrinologist gave me a choice rouvastatin as the Proteinuria was coming from the kidneys or arouvastatin.

I have been on the arouvastatin 10mg since and the pain continues. I discovered an article

documenting the back and side pain with this drug..which my doctor dismissed as rubbish. I am now off the drug temporarily.

I have no symptoms other than rising protein spilling and a come and go pain under my right rear rib cage.

I did see my GP about this in June, she did a thoracic xray which was negative.

My Lisinopril was increased to 10mg in September when Proteinuria rose to 2.4 -2.9.

I had my 3 month renal check last week. Proteinuria has risen to 3.8. My new and senior nephrologist increased the Lisinopril to 20mg.

My kidney function is.7 consistent and I am told normal.

My nephrologist prefers to monitor as my protein spilling is within normal statistical value and to to infuse me with Ritxutub, benefits must outweigh risks.

All other labs are normal other than my TSH connected with my hashimotos thryoidosis which has jumped up to 15.

I am taking calcium magnesium citrate + D3 for IBS..no change in timing for 4 years.

My endocrinologist, also senior staff and the physician who found the protein spilling, had no explanation for an 8 point rise in my thyroid other than drug interaction and insisted I wait 3 hours between synthroid and cal mag...done.

I eat kidney friendly..vegetarian and walk an hour a day.

I am seeing my new GP in December and will ask her to address the rib issue and the statin.

This is distressing me terribly and ready to fire both nephrologist and endocrinologist.

Support and thoughts are appreciated. Thank you.

[orangecity41 NKF Ambassador]

I was diagnosed at GFR 3 and had high cholesterol and low vitamin D. Doctor prescribed a renal diet, cholesterol non statin med Zetia (ezetimibe generic) and vitamin D. So far regimen of diet and exercise is working Sounds like you are getting proper treatment and meds for your conditions. Hope it all gets worked out for you.

[Bet117 NKF Ambassador in reply to orangecity41]

Orangecity,

Thanks so much for reaching out to me. Your concern helped.

I am delighted to hear that the adaptations that you have made have been successful for you! I am in your corner.

I will discuss the Zetia with my new GP when I see her in a few weeks, thanks! I am sure that it will be less abrasive than the two statins that they have tried with me.

My diet is kidney friendly, but I will look up renal diet. Please feel free to share.

With appreciation.

B

[orangecity41 NKF Ambassador in reply to Bet117]

You are welcome. The generic just came out for Zetia, it is ezetimibe, and much lower price. The renal diet I am on is called pre-dialysis diet. Imagine are different diets for kidney disease? Best to check with your Doctor on any diet change. Good fortune on your journey.

[Bet117 NKF Ambassador in reply to orangecity41]

Orangecity,

Thank you so much for your information and concern. It means alot.

I took down and read about the Zetia. When I meet with my new GP in December, I will discuss it with her.

My thyroid labs will be repeated in six weeks; that should indicate where we are there.

As far as the statin drugs,

I am sure it will be addressed at that time.

I did receive a patient note from him indicating that he will give me two choices; return to the atrovastatin ( Lipitor) which has the back ache as a side effect ( he dismissed that) or back to the rouvastatin ( Crestor) which he initially had me on.

He feels that the protienuria is coming from the kidney and the latter medication, which he promoted, would be his choice.

He feels that one thing has nothing to do with the other.

My issue is why take a drug which produces proteinuria when my protein spilling is on the rise?

I have seen this endocrinologist for about 14 years and trusted him. This is the first time that I have had any issue.

As far as the diet. I saw a RD at the hospital. She told me that at this point to watch the sodium, continue to eat alot of fresh or fresh frozen vegetables and fruit.

She did not restrict me to white bread or no whole grains. She said hummus was fine. I portion control.

Also that i could add in 3 eggs a week and 3oz chicken or fish if I liked.

I read the Davita material and am thinking of taking in a class for suggestions.

I don't fix fancy meals here.

I will look at the pre- dialysis diet and see what is offered.

Please keep in touch as the support is appreciated and goes both ways.

[Sirrahbed]

I am sorry you are feeling so frustrated Bet. I know with my husband, his proteinuria changes quite a bit. I ordered some urine test strips from Amazon, just for him to keep track. That may help you to see that fluctuations do happen? I buy Rapid Response brand and they check ten different parameters so good to monitor urine infections, etc as well. His thyroid also changed quite a bit through the disease process, TSH went from his normal of 1.5 up to 12 at one time, requiring changes to his Synthroid from 1.75 now down to 1.00 and yes, advised to take it on an empty stomach.

Membranous Nephropathy is pretty frustrating and hard to know when to treat it aggressively and when to wait and hope it resolves.

(((((Hugs)))) to you! Let us know what your GP suggests. Debbie

[Bet117 NKF Ambassador in reply to Sirrahbed]

Thanks so much for responding, Debbie! It helped!

This last set of tests caught me totally by surprise as I felt that the increase in the Lisinopril would stabilize the protein spilling, instead, it increased. I really wonder if it is the best drug for me, although widely used and well tolerated.

I will order some rapid response strips, Amazon is GREAT! Lets see where this goes.

The senior nephrologist that I now see told me MN can be like a picked fence. I do know that you and Dennis have been there.

I am happy that this man was attentive and kind when we spoke on the phone.

I was initially diagnosed as low risk as the only symptom I have is the protein spilling.

The thyroid..been taking synthroid for decades; on arising with H20 on an empty stomach and waiting at least a half hour before even taking a vitamin or breakfast.

I went from .17 to 7.5 to 15 between March and now..this was perplexing as I have done nothing differently. The doctor has no answer???

Keeping to a healthy diet and hoping this all slows up.

Please keep in touch and let me know how you are both doing as I care!

Certainly will let you know what my new PCP says. I am going to try to get in sooner once my records arrive.

The practice resignation of the woman who I previously saw came as a total shock to us. Never a good time for change.

Again, many thanks!

Betty

[Sirrahbed in reply to Bet117]

With MN you are going to spill some protein. Hubby is in remission and his protein still goes up and down...even during the course of a day.

I did not know you were having the back pain, could this be related to the IBS?

BTW I questioned his Nephro about a link between thyroid and CKD and he did not think so, though I Google and read that they are😀

In the meantime, my GFR has dropped to 19 and Nephro has no clue why, suggests scheduling a biopsy at my next visit.

It really sounds like you are quite stable and now being followed by someone who is more caring than your female Nephro.

Take care!

[Bet117 NKF Ambassador in reply to Sirrahbed]

Had slight back pain which came and went when the female traumatized me. David and I questioned the IBS and some repressed anxiety.

I read on I believe drugs.com that Lipitor can cause back and side pain. So I asked to be taken off this.

I didn't realize that your GFR was 19. See how it goes. None of us want a biopsy, but when faced with it, decided "Lets find out what this is..no guessing". I hope that perspective helps.

I will be here to support! 👍

Reach out!

...and thanks soo much for the hugs..they helped!

😊💕

[Sirrahbed]

Ritxutub? Are you taking this infusion or is it one the Nephrologist wants you try?

[Bet117 NKF Ambassador in reply to Sirrahbed]

No.

Actually, my nephrologist chose to raise the BP medication by 10mg more to try to get the protein spilling below 3.8 or stabilize.

I see him in 3 months for a face to face monitor. I am on 10mg twice per day as my BP is normal to low normal.

He explained his feelings were that as long as my kidney function was normal ( as well as my other labs were other than the thyroid)and I have no edema, that he prefers NOT to go to the heavy hitters. He feels the benefits have to outweigh the risks to give me cancer drugs.

Ritxutub would be his choice if we had to go that route. This is the most current with MN. Mayo Clinic thinks well of it. This would have been my choice as the prednisone can weaken the bones and I was just discharged for 2 years from my osteoporosis doctor, which was super..

[Zazzel]

Hi Bet,

I can't forget if you told me you had an Ultrasound of your kidney or not. As we've discussed, I had a cyst on my kidney last ultrasound and I believe that was causing me pain. Could that be a possible cause for you?

In any case, just checking in to show support. Hope you find answers soon!

[Bet117 NKF Ambassador]

Hi..

Have not had an ultrasound but had a contrast CAT scan. There is 1tiny cyst which is barely recognized.

If you touch my ribcage in the back. The discomfort is there.

Thoracic x ray in June was negative.

Thanks so much for responding and caring.

Speak Soon!

B

[Bet117 NKF Ambassador]

Mr. Kidney..

Are you out there?

[Hidden]

I'm alive and well. I've only posted a couple of times over the weekend. One of my dogs had surgery on Friday and while I was waiting to be called to pick her up the other one chased a couple of squirrels in the yard and pulled a ligament in her leg. She's been limping and the Vet gave me some pills to give her until tomorrow when they are going to take x-rays and see how bad she is. The beagle who had surgery is okay but goes back next week for removal of the stitches.

It's been a long weekend. Did I miss something?

[Bet117 NKF Ambassador in reply to Hidden]

Wow!

You have had quite a weekend!

Hope that the dogs are on the mend and not in any discomfort.

Scroll up as I reached out for support over the weekend, which is not like me. As you know I try to support here.

The folks on the site have been wonderful!

I went to Boston for my three month lab check; report not favorable.

Scroll all the way up and read my post

Proteinuria and Thyroid Both Rose Need Some Support.

It will fill you in.

Please let me know your thoughts. Feel free to post or message me. I have high respect for your opinion.

Thanks!

[Hidden]

I'm taking Atorvastatin. Originally, the doctor had me on 80 mg. When I questioned her about the dosage I was told that she knew what she was doing. My next doctor who is now the current one said that 80 mg. was too much and reduced it to 40 mg. The pain stopped and the protein spilling has dropped to within the normal range. Along with the kidney-friendly diet, that door for me is closed for the time being.

The other drugs mentioned are unknown to me and when I tried to look them up in drugs.com I had no luck finding them.

Hope that helps some.

[Bet117 NKF Ambassador]

So you changed doctors.

Initially, my endocrinologist put me on Rosuvastatin 5mg. which is the generic Crestor. This was in September.

In late February, I was put on Lisinopril 2.5 mg. by the lady nephrologist for the protein spilling.

Pharmacy pointed out that Rosuvastatin produces Proteinuria ( I also did my HW), I asked that I be given another statin at my early March endocrinologist appt.

Annoyed, he took me off the statin to see if the protein spilling would go down. No dice. Saw the woman nephrologist 2 weeks later and I was spilling 2.0..biopsy.

Remember, I am not diabetic, have low to low normal BP and no other symptoms.

After biopsy, endocrinologist wanted to put me back on the Rosuvastatin as he felt that due to the dx of membraneous nephropathy,the protein was coming from the kidneys.

My PCP suggested the Atorvastatin as she felt that it was a better drug and easier on the kidneys. Grumbling, endocrinologist put me on 10mg..back pain got worse.

Thyroid is Hashimotos Thyroid and I have been on Synthroid for years. I have always taken it on an empty stomach with water upon arising and waited 30 minutes or more before putting a thing in my mouth. Did not take the Calcium Magnesium Citrate for at least an hour after and never had a jump in my TSH results until now.

I am off the Atorvastatin and received a patient note informing me that I will be re-started on the Rosuvastatin once my thyroid is re-checked in 6 weeks.

So, I have rising Proteinuria, which the new nephrologist raised the Lisinopril to 20mg. and a high thyroid..doing the same thing.

You know I eat kidney friendly and drink my water. I found a davita class nearby and will attend on December 12th.

Common denominators of change: Lisinopril and Atorvastatin.

Lisinopril is supposed to reduce Proteinuria.

I questioned allergy.

Thoughts...

[Hidden]

I can't be objective here. The Lisinopril backfired on me. It sent my BP skyrocketing after only 11 days and I spent hours in an Emergency Room. My potassium spiked as well. They got the potassium down and stopped the Lisinopril. Another doctor started me on the Amlodipine and later on the Atorvastatin. Now taking the 10 mg of Amlodipine and only 40 mg of Atorvastatin (not the 80 mg) and my BP is normal, the spilling stopped and the side pain disappeared.

There are others in these forums who have been successful with Lisinopril but my issues were different and it didn't help me. Also, before they put me on the Atorvastatin they tried Simvastatin. I checked that one out first and it was not recommended for someone with CKD. Mentioned that and she switched to Atorvastatin but again the dosage was too high. Dr. didn't like my questioning her so I found a different doctor and she lowered the dosage to half. It's been working for me.

[Bet117 NKF Ambassador in reply to Hidden]

No, I totally agree with you.

I have been leary about the Lisinopril for a while now. It certainly has done nothing to stop the protein spilling. I have heard many people praise it, but it may not be effective for me. Another consideration is that I have a number of medication allergies. Who knows if this could be one. I am hoping that my new PCP will be one with ideas about the statins as endocrinologist won't hear of it, my two choices are in post above. I also heed your advice that if they don't like questioning and discussion find a different doctor.

Right now I have to look into this back pain again. When I had it checked in June, the NP covering for my then PCP checked me out, took me off the Atorvastatin for 2 weeks ( to the dismay of my endocrinologist) and had a thoracic xray done which was negative.

My Boston nephrologist recently told me that they use the ACE Inhibitors for this as a first line.or an ARB for protein spilling. If my next protein shows continued spilling, I plan to question the drug. Hopefully, this man will listen and use his experience to figure this out.

As far as the meds that you are on, I know them well as my dad was on the same BP med as you are and it was very effective. I read the same about the Simvastatin for CKD patients so that is out. ( dad was not a kidney patient and the statin was fine)

The whole mess has me unhappy. The PCP decision was made for me, I am hoping the new woman I chose will be a good choice with some good ideas. I am going to ask for more than an xray with the back as well as an overall thought on the whole mess.

I have the thyroid checked in six weeks. I may not want to resume the statin at that time.

I am hoping the "attitude" ceases.

Keep in touch..it helps!

Thanks...

[Hidden]

I agree and one other thing for everyone. The medication is the big issue but just as important once that is selected it is so critical that the dosage is a proper one for the individual. I've read several papers from Drs. at the Mayo Clinic and at Johns Hopkins and what I've read is to start small and increase dosages rather than start big and cut back. When the doctor I was dealing with jumped to 80 mg of Atorvastatin right off the bat I was shocked. I checked it out and found out it was way too strong. Never again will I let them order a script for me without first checking it out.

[Bet117 NKF Ambassador in reply to Hidden]

Agreed. Imperative! I have read the same as the body must learn to tolerate the medication and see if it is working.

As the patient you are entitled to discussion!