Swollen hands and feet?

[Idaho Dusty]

Anyone get swollen feet and hands even with a consistent dose of florinef?  My feet are usually more swollen when I get migraines.

[Wanda]

That's interesting Dusty.  Seems I have read that extra fluid can cause a migraine.  Having addisons makes it difficult to try cutting florinef & fluids to see if the migraines are less frequent.  Have you had migraines since I saw you in CO?

I sometimes get lines from my socks.  Guess that means I'm swollen.......or fat!!  

[Idaho Dusty]

I didn't know that about fluid causing migraines.  I got a massage the other day and the therapist said, "Did you realize your ankles are congested?"  I seem to have chronic swelling but sometimes it's worse than others.

No migraines since CO BUT I am due next week.  :(  

I will do some research on the fluid retention and migraines.  Thanks for the new lead!!

Dusty

[Mary Anne]

My hands and feet have been swelling.  I thought it was due to some doubling of my HC.  My endo says "it is not related to Addison's".  Think I need a new endo!!

[Idaho Dusty]

Hi Mary Anne,

I know this sounds really grumpy but I don't believe a thing doctors say about Addison's anymore.  It seems like they come up with strange theories that are not backed by any research or science that I can find!  That being said, how much florinef do you take?  I take .05 (half a pill) in the winter and a whole one in the summer.  I may need more because although it's winter, I'm starting to have some cramping issues.  

Do you notice any pattern to your swelling?  Does it coincide with your female cycles?  HC dosage? Florinef dosage?  I only ask because I don't see a pattern to mine yet.

Dusty

[Mary Anne]

I take one florinef in the morning and one in the evening.  So I have a total of .2mcg a day.  Mine is generic fludrocortisone.  I have not noticed any pattern to my swelling yet, it started with a recent period of doubling HC.  After that, the doctor also doubled the florinef which I have kept doubled.  

I really need a new endocrinologist who knows more about Addison's.
So right now, I take 15 mg of HC in the morning  and 5 in the afternoon plus the above florinef dosage.
I will watch for patterns and let you know what I figure out.

[Idaho Dusty]

Can you sleep when you take the florinef at night?  I am completely unable to sleep.  I can't remember why I was taking the Florinef at night.

Good endos are so hard to find.  In the 7+ years I've had Addison's, I've relied completely on my fantastic GPs in my rural area.  I do A LOT of research and we work together.  I am definitely nervous about finding a new doc when I move out of this snow pit!

[Sue in Naples]

ok heres the deal ... more often than not addison's has a friend... hypothryoid...  when thyroid levels dip... swollen hands happen...  check out schmidts syndrome ... polyglandular autoimmune syndrome 2    Dusty this is my first post... thanks for the awesome resource here...

[Idaho Dusty]

Welcome Sue!

My thyroxine has stayed the same at 88 mcg/day.  I'm not sure what would make the levels dip as I take the med at the same time every night, avoid soy, etc...

:)

[Idaho Dusty]

Got up this morning and have gradually increasing swelling.  Went to bed at a reasonable hour, no booze, same meds.  Weird.

[Julie M]

Hi - Do you think it has anything to do with winter and not sweating as much as you do in the summer - so you swell a bit more.  For me I think it is too much Florinef that makes me swell -but that is just my observation.    For me, I tend to not take a half dose of Florinef (.05) when I am not exercising alot and 1. mgs on a good exercise day.  

You are amazing that manage this blog.. this is a ton of work...  But, thank you for doing it.  Take care.  Julie (from Salt Lake)

[Idaho Dusty]

Julie,

Thanks for the suggestion.  It might have something to do with the Florinef but I think I might need more during the PMS week.  For the third month in a row, I'm noticing my feet swell almost a size and my rings need to be removed this week.  In addition, I'm light headed, salty faced and dehydrated during and after exercise.  I'm on .05 but I think I'm going to try .1. I realize this is the opposite of what you said but I think I could be swelling from dehydration.

Thanks for getting me to think about the Florinef issue!!!  

I appreciate the complements!

:) Dusty

[Julie M]

I agree with you - (even though it is the opposite of what I said :  )    Before I was diagnosed with Addison's  I used to get a great salt beard on my face, - along with salty legs, etc, etc.  I don't sweat quite like that anymore . You might try alternating the does of Florinef every other day of .1 and .05 .    Of course, what do I know... this probably won't do anything for your swelling.... Good luck... and chat soon.  Julie

[Idaho Dusty]

Julie,

I forgot to mention that I live at 6,000 feet and do most of my running between 6,000 and 8,000 feet.  Dehydration at this altitude causes swelling.  Whoops about that omission!  Sorry.   I've got all of the symptoms of dehydration during this week in my cycle:  salt spilling, swelling, low bp, light headedness.  This week I'll alternate like you said and see how that works.  Great suggestion!  I went over to my med cabinet and took .05 extra just now and I kept the pills out to put in the pill case later.

Thanks!!!

:) Dusty

[Idaho Dusty]

I got a migraine yesterday and before I got it I noticed that my eyes were swollen in addition to my hands and feet.  This morning my eyes are swollen again.  I did take double florinef one day and regular dose on alt. days.

What the heck?!  You'd think after nearly 30 years of this I'd have it figured out!  NOT!

[Michael O]

I've noticed in the last month or two I have been getting swollen hands after additional stress or activity.  It's usually associated with stiffness in the joints of my hands, wrists, knees, and ankles.  I'm not sure if it's because of too little HC (I have been at 10 to 12.5 mg per day) or dehydration.  The dehydration comes to mind after reading this discussion.  

The most recent happening was a week ago.  I had taken 7.5 mg in the morning, drove 2.5 hrs to NYC, took 2.5 mg around 1 PM.  Then I was walking in NYC with my family and after walking 20 blocks I started to get the stiffness, swelling and sore tight muscles in my legs and back.  We jumped a cab to our next destination and I took another 2.5 mg around 5 PM.  We then walked another 18 blocks to the hotel and I could feel my whole body seizing up with every block.  I couldn't keep pace with my kids and they kept having to wait for me.  My hands felt like baseball mitts by the time I got to the hotel.  I popped another 5 mg around 7 PM when we got to the hotel and I had to lay in bed for 2 hours before I could comfortably get around the room.  I didn't sleep well that night.

I took 15 mg the next day and we subwayed to Central Park and did the zoo and walked for hours.  My legs were a little sore but I didn't get the stiffness and swelling like the day before.

Mike

[ashley]

I also get increases swelling after intense exercise or any other form of stress...still haven't figured out why.

[Idaho Dusty]

Sometimes I get swollen immediately upon starting exercise and sometimes during.

I was in heat this weekend and I felt a lot better when my husband's hands were swollen when mine were.  Perhaps some swelling is normal.

Right before a migraine my sinus, gums and soft palate seem to swell.

Weird!

[shellyanm]

I have swollen and feet and hands. Mostly my feet are what is bad. Makes it difficult to walk properly. I also have really bad cramps on my calves in the mornings when I wake. Not sure why. Docs dont seem to know how to fix the leg problem. But it was there before my diagnosis with addisons and before the cortisol and the florinef. SO i dont think this is why - i think it is related to my thyroid or is a function of addisons - but does not resolve with meds. unless i need diff dosages. but my feet have been swollen for 9 months. and i have been unable to walk properly for all this time. it is a painful and terrible thing because i cannot excercise and am 10 llbs now overweight. and am considerably bloated. dont know how to get rid of this. if anyone has been able to resolve this problem let me know.

[ShannonD]

Dusty,
let me know what you figure out.
Here are my thoughts....and questions.

Before I got diagnosed, and when I was in denial and taking too little med, I would compensate by increasing my salt intake.  So when I finally increased my florinef to a "normal" dosage, I have been able to cut back on salt (still alot, but not tablets or glasses of salt water), and now I do not swell as much.  I definitely notice that I swell more when I take in more salt....I also noted the paradoxical reaction.  

Are you drinking a lot of water.....are you taking in more salt so that you can drink water?

I take 0.05mg of florinef on regular days.....0.075mg if I am going to get sweaty with exercies, and if it is summer, hot going to be outside for a long time.....I take 0.1mg

Before I was diagnosed I WAY over drank water (which I think sped the demise of my adrenals).....I was having those pressure headaches.....One thing that addison's can do is cause SIADH (syndrome of inappropriate antidiuretic hormone secretion).  I had that.  So currently I do not drink much water (part of the treatment for the SIADH I'd developed).  I hope some day that I am able to drink at what I consider a healthier amount of water.  Currently I drink 1.5 (maybe 2) liters of water a day.....I might increase by 500ml/hr exercise.  

I do not know if you remember some of my first entries here but I was obsessed with the "plumpness" of my veins.  If my veins were plump, my head felt good, and if the were not plump (I was usually retaining water) and my head felt bad......Believe it or not......I am better hydrated with less water.

So my current regimen is florinef as above....little bit of salt water or small V8 in am, and salt on my food.  But only 1.5 liters of water a day.....and for whatever reason...that keeps my veins plump and better hydration.

Regarding thyroid....I did have swollen eyelids....and was a bit swolllen.....the give away on the thyroid for me was the coarse hair, husky voice.....feeling of pressure below my adams apple....and choking on my saliva all the time.  So if you have thyroidish symptoms, perhaps dose needs to be upped.

Let us know what you figure out!!  If it does not get btter with minor adjutments, get electrolyte n renal function tested.

take care,
shannon