I have Addison's disease, I am pregnant and my sodium is low. All other blood values are fine and I take medication as usual 0.2mg of Fludrocortisone. Has anyone had this issue? Should I increase Fludrocortisone? I seem to get sick with sodium levels of 131 which is within the normal range which means that I wait until I am really sick before I go to hospital to ensure that I get treatment (I am sent home with a level of 130 and above). My endocrinologist is of no use. Does anyone have any advice?
30 May 2010
hi mmeagher, I have had Addisons Disease for 29 years now, and I've experienced it all. When I am low on sodium, I eat lots of dill pickles, Fritos, and olives. This has always worked just fine, and I can tell when I don't need to anymore, as I feel much better (more on the normal side). I know being pregnant, you're not supposed to eat much in the way of salty foods, but remember, we are not "normal". What others shouldn't do we should. If it concerns you, start out slowly, with Fritos. It may not take much; you won't know until you try. This will bring your sodium back up, but you will have to play around a little to see how much works for you. That could change often depending on how much your body needs. Then, the next time you go to your OB or Endocrinologist, let them know what you are doing. Just don't "do" in excess. Your body will tell you how much it needs. If it needs a lot of sodium to feel normal, it will tell you.
Trust your body to inform you. When I first got Addisons, my Doctor told me "within 1 year you will know more about Addisons Disease than anyone, including your Doctors." That is because we are in constant communication with our bodies. It is sending you messages all the time and it is the greatest teacher. That is the sum total. Trust your body to tell you what and how much it needs. You can choose whether to do a smaller continual sodium intake, or just when you start feeling that feeling you get when you need more. I personally eat those things when I start feeling that particular kind of "bad". I have always tended for the minimum needed of anything. Whatever you do DO NOT TAKE SALT TABLETS. That is very bad!! It will throw your body completely off. Being pregnant, you might go for the smallest amount you can to avoid the swelling thing, but if your sodium is low, that can be as damaging to you as the salt. And if you do everything in moderation, you will have one "happy" body. I am not telling you to ignore the Doctor's advice. I am just saying that sometimes, we do know more of what we need more than they do, because Addisons "belongs" to us, not them. They can study all they want, but in the end, you will know how much, how little, in almost every aspect. If you combine their knowledge with yours, you will be ok. Hope this helps. It's kind of nice to talk to someone else with this "thing" we have. It can be a very "lonely" disease, being so rare. And as time goes by, you will find that Doctors will all have different opinions on what you should do, what kinds of meds to take, etc. That's one reason it's nice to talk to someone with AD. We get the benefits of the experiences they have had, and what they do to get by. When your cortisone is low, what symptoms do you get? Mine vary and can be from a little nausea to mental anxieties, "mood" changes, dizziness, fatigue etc. I feel like I am in a "fog" so to speak. How about you? It's a strange disease isn't it? It's like opening a surprise package every morning. Wow, a different present (so to speak) every day, and not necessarily a welcome one. Does your pregnancy have any affect on you? Do you need to take more cortisone daily? When I first got AD so long ago, the Doctors didn't know much about it, and they all wanted to use me as a guinea pig (you know; to see what would happen if I did this or that) for free treatment of course. The one thing they all agreed upon though is that I should not have any more children: that would cause too much stress for my body to handle. Luckily, I had enough kids already, so that was ok, but I've always wondered what kind of problems it would cause and what would you have to do if pregnant to remain safe yourself, especially through your labor and the actual birth. And what kind of effects. if any, would the baby go through. How far along are you? First baby? I guess I'd best stop writing. I could go on forever, it's so great to talk to someone who understands me and my constant "friend" (lol) AD. If it's ok, I will make you my friend, and then you will be notified if anything comes in from me and I, from you. I hope to hear from you and God bless and keep you and your baby safe and happy (I know He will). I am beanmarie
12 Mar 2010
I'm not an expert in this area ... if you think your endocrinologist is not good it is probably a good idea to talk to you gynecologist/obstetrician ... they should know what to do.
Please join the forum ... someone there may have similar experiences and may be able to help you.
- Fludrocortisone Information for Consumers
- Fludrocortisone Information for Healthcare Professionals (includes dosage details)
- Side Effects of Fludrocortisone (detailed)
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