adrenals, MRI #lupus

I went to see the nephrologist on Friday. I was her last appointment so we spent a lot of time talking. The office was really hot, so I spent a lot of time sweating too. She took a complete history. I told her about my high blood pressure and my extreme sensitivity to salt. She thought it was odd that I have such a huge negative reaction to it. I didn’t used to. In fact, Addison’s Disease requires a high salt diet. She also thought it was odd that even though my blood pressure isn’t dangerously high by clinical standards, that I feel so horrible from it. It makes me really dizzy, and causes shortness of breath, heart palpitations, and chest pain. Sometimes I even get irritated or confused. She thought maybe with the Addison’s disease that my body was just accustomed to having low blood pressure most of my life, and anything elevated would feel extremely high to me. She looked at my Doppler ultrasound and the blood flow and size of my kidneys looked normal. My bladder also looked normal (that’s another story). There was no evidence of narrowing arteries.

She seemed really interested in investigating why I’m so sensitive to salt, and why my blood pressure makes me so uncomfortable. She talked about the hydrocortisone I take for my Addison’s, and how anyone on long term steroids could potentially develop high blood pressure. That didn’t really make sense to me since it’s not prednisone, and since I’m taking a dose just to replace the cortisol that my adrenals should be making. I mentioned to her that my neurologist had wondered why no one investigated a pheochromocytoma before, which is an adrenal tumor (90% are noncancerous) that causes too much production of noradrenaline and adrenaline. Since my headaches are still pretty bad and are seemingly influenced by my blood pressure, it would make sense to look for a hormonal cause. She seemed to agree that we should look for it.

She gave me jugs to collect a 24-hour urine sample. I’ve done it before. Nothing makes you feel sexy like keeping your pee in the fridge. I was originally going to do it the night before my first infusion so we wouldn’t have to make a separate trip to LA just for a wee wee test. After thinking about it, and after talking to my rheumatologist, we decided together that it was necessary to investigate my adrenals before I start my first Actemra infusion. We are working on scheduling an MRI, hopefully for this week. The nephrologist doesn’t think there is any reason I should be taking florinef anymore, and to check with my endocrinologist about it. There was a time when I needed florinef, but at this point it may be adding to the problem. I don’t know why when my adrenals produce little/no aldosterone that I would suddenly not need medication for it anymore. It’s all been strange and miserable and I hope they sort it out.

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5 Comments

  1. I never had high blood pressure until I started on hydrocortisone. I’m am secondary adrenal insuff so I don’t take florinef, I tried it once during the hot summer but my bp went through the ceiling. So many things you have to keep track of…..I don’t know how you do it.

    • I started hydrocortisone in 2005, my bp was a bit on the low side before starting, and after it was completely normal up until about 3 years ago, then it was like someone flipped a switch. It does get a bit overwhelming at times. I’m going in to see more doctors and get more tests this year than I have in previous years trying to sort it all out. It beats having one doctor just shrug. Last time I did a 24 hour urine they didn’t give me enough jugs. I drink an obscene amount of water lol.

  2. I am primary and I wouldn’t mess too much with the florin gel. After the removal of my glands I was put on 200 once a day but that was reduced to 150 when I developed swollen feet and hands.

    You must really pissed off that no one is really getting a handle on your conditions : take care

    • I’m primary also. I took a break from florinef for a few days once to see what would happen. I didn’t really feel like my BP was lower. I felt more tired. I’d be willing to give it another go just to see what happens.
      It’s been a really slow process, as things seem to get more complicated as time goes. I’ve accepted that it might take a while. It does wear me down a bit sometimes.

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