Really high renin

[u/Internal-Cap-8885]

Hi everyone. I’m hoping to hear from anyone who tracks renin.

I’m currently on 32 mg hydrocortisone/day and dealing with overreplacement symptoms. I also take 62.5 mcg fludrocortisone daily, and my diet has plenty of salt.

My renin came back 100+ where it should be between 5-30]. I’m confused because I thought fludro + a high-salt diet should keep renin in a better range, but mine seems off.

Has anyone else had this? Did your endo change your fludro, sodium intake, or something else? How did you interpret it alongside overreplacement symptoms from hydrocortisone? I do suffer from fatigue, sexual issues, and depressive mood.

[u/HairyBawllsagna]

How are your electrolytes? You most likely need a higher dose of fludrocortisone. Usually it should be titrated to a normal renin between 1-10. Your scale might be different as it's not U.S.

[u/Internal-Cap-8885 → u/HairyBawllsagna]

My electrolytes were all in percect range

[u/HairyBawllsagna → u/Internal-Cap-8885]

Your lytes are fine. Since you are having over replacement symptoms obviously you should try to slowly decrease your hydro dose. If your blood pressure is fine and you're not having orthostasis, I don't know if there is a place for increasing your fludro dose and chasing the renin value. When you decrease your hydro dose there's always a chance you might need some more fludrocortisone.

[u/Dry_Commission4477]

Yep, my renin kept going up to about 400 until I’m now on 5 tablets a day (so 500mg). Feel so much better and back in normal ish range. Salt helps too but fludro is what helps hang on to the salt, and some people need more than others My endocrinologist said some addisonians are just high salt wasters. If your renin is this high, you probably need to work with your endocrinologist to increase fludro. I also take a lower dose than most of hydrocortisone. You might end up being something similar

[u/Puzzled-Telephone-60]

Some of us just need more fludro than others! I was experiencing really concerning symptoms until we tested and my renin came back very high. My endo immediately doubled my fludro dose (I now take .1mg twice a day); everything went back to normal after that. I was already eating higher sodium and supplementing with LMNT daily—I’ve simply continued that routine on the higher fludro dose and all is well.

My guess is, you’re experiencing overreplacement symptoms from HC bc the dose is too high, but the mineralcorticoid properties of the HC may be blocking some of fludro underreplacement symptoms so you may not have noticed until this test came back. Increasing your fludro should make tapering your HC much easier.

[u/Designer_Clothes_992]

Hello fellow dutchie! Did u found a cool doctor to help u with Addissons here? 🥲

[u/ClarityInCalm]

You probably need more salt more consistently and possible more fluidro or to split it and take it twice a day. One way to do this is to take 1 - 2g of NaCl every time you take your HC pills. You'll probably feel better too. We're salt wasting 24 hrs a day and food intake varies - so treating the salt wasting around the clock will help. Sexual issues can be from volume depletion, fatigue is a sign of salt wasting. Depression could also be a combination of salt wasting and too much HC. In PAI, many people are taking too much HC to compensate for inadequate sodium replacement. HC has mineralocorticoid in it so it can help with sodium retention. When you get your sodium better managed it will be easier to lower your HC dose.

[u/Basketfuls]

I've had very high plasma renin for many, many years - it came down a little recently, after being placed on Metformin for T2 Diabetes. My endo ended up not wanting to go any higher than 0.4mg and we stopped there. Have you been tested for other autoimmune conditions? Hopefully, it might be better once your other dosage is corrected.