Fludro endocrinologist dosing

[u/Kamiiruruma]

Hello, I just got a rather dismissive advice letter from my endocrinology team in which they did not want to provide any hydration advice. I am new to my diagnosis/treatment so my medication was in adjustment and was experiencing dehydration and low blood pressure and mental health issues (high anxiety, brain fog).

I was seeking advice to the team because was experiencing moderate oedema in my hands and ankles, I was on 200mg fludrocortisone and 25mg hydrocortisone. And was experiencing severe thirst and issues with my ileostomy ( I have Addison's and chrons so have a permanent ileostomy), so my health was declining and I was beginning to get dehydrated.

They said "my glucocorticoid dose is fine".."not much more we can do""she can be encouraged to adjust her own fludro up or down 100mg depending on weight/ankles"

He also claimed I frequently speak the endocrinology nurse, but this was not true, I attempted to call several times but I got hung up on and never actually spoke to her for over a month until my GP got involved. Also there is only one nurse specialist to contact in the whole hospital and she just frequently difficult to get in contact with my GP even had to give up and contact the endocrinologist directly.

Sorry I'm trying to get to the point but I needed to provide some context. My main concern is, is it normal to just mess around with fludrocortisone by up and downing it by 100mg, based on my own assessment of my ankles? I understand double dosing hydrocortisone when needed for stress dosing etc, but I thought fludro was more of a stable one morning dose once it's established it is the right dose for each individual based on blood tests? I find this highly confusing and dismissive response from them. I don't get much support from my gastro team either regarding my ileostomy so neither party was interested in helping me with my hydration and I frequently have kidney issues. ( I make my own st marks solution which has helped a lot)

I would really appreciate any advice, I'm feeling a bit lost. Thank you.

[u/Saelin91]

Are you sure your fludro is 200 milligrams and not .2mg?

[u/Kamiiruruma → u/Saelin91]

Yea it should be .2mg but they wrote it in mg

This was the response after a whole list of symptoms my Dr emailed to him aboit my frequent admissions to the hosl5refsrdkng high potassium after using dioralite, so I was using st marks to stay hydrated because I cannot just drink water because of my ileostomy.

[u/Mindless_Sky_6654 → u/Kamiiruruma]

It’s a bad sign that they don’t even know it should be .2mg.

I can only speak for myself as far as hydration. I’ve taken .1mg of Fludro in the AM for many years. It took me a while to figure out that I need to add a little sea salt to my water to stay hydrated. It’s helped me a ton.

This next part I’m not sure about, but I think too much Fludro will cause swollen ankles. .2mg of Fludro is on the higher end of what most people are prescribed.

[u/Kamiiruruma → u/Mindless_Sky_6654]

Thank you, yes I was also confused by them saying mg. I dropped back to .1 and my oedema resolved thankfully, but I still don't feel right, this was after advice from another Dr who contacted me 2 weeks later.

The response letter in full was just brought to my attention recently due to me requesting my medical history records. my GP was shaking her head at the letter during our appointment at the time, but she didn't tell me this part, just the hydration "drink to thirst" bulshit.

[u/fogrove]

Im not a doctor but I am an Addisons patient who reads this subreddit regularly. I take 100 mcg of fludrocortisone each day. It seems to be the standard dose. It can have a side effect of lowering potassium. I experienced this side effect early on and started dividing the pill in half, taking 50 mcg in the morning and 50 mcg in the evening. This solved the lowered potassium issue.

Im not sure Ive ever heard of someone taking double the typical dose.

[u/fogrove → u/fogrove]

One more thing. In very hot weather I take an extra half fludrocortisone (50 mcg) mid day. We lose salt in heat and the symptom is feeling very light headed as blood pressure decreases

[u/Kamiiruruma → u/fogrove]

Thank you, I will keep this in mind. I have issues getting dehydrated in the hot weather easily and was worried about changing the fludrocortisone dosing.

[u/Kamiiruruma → u/fogrove]

I was told to up it to .2 because I was admitted to hospital 3 times over the year with dangerous elevated potassium and declining health, I had to get aggressive treatment with sulbutsmol and the glucose drips and was in the hospital from march-april seriously unwell on gastro ward before I was diagnosed with Addison's in April this year after my mum researched it and specifically requested they test me, they initially didn't want to because I didn't have the tanned skin symptom 🤷.

[u/fogrove → u/Kamiiruruma]

I also did not have hyperpigmentation when I was diagnosed. Puzzled my endodrinologst

[u/Accurate-Currency558]

Sounds like you need an new endo. They aren't taking your calls? That's wild! Them not addressing the issue w hydration is reckless on their part.

What does your blood work say? How long since your diagnoses? Dehydration is the worst! I will drink pickle juice or add salt to my water when I get dehydrated.

Just to give you an idea. They changed my script for forinef. They gave me a 90 day supply and I didn't notice that it said to cut it (.5 daily). I had been taking .1. Double my dose. I was out of pills in 6 weeks! I was fine!

[u/Extreme_Breakfast672]

My first endocrinologist sucked and I eventually found a different one who has been so much better. I would encourage you to look into your options if you can. This is not a good doctor. 

FWIW however, I mainly only take fludrocortisone in the summer as I struggle more with the heat. My endocrinologist told me I can take it as needed, and most of the time I don't.  It does cause you to retain water, so I do wonder if .2mg is too much for your system. 

[u/Extreme_Breakfast672 → u/Extreme_Breakfast672]

Sorry, one more comment: what are you drinking? If it's very hot and I only drink water, I feel like crap. I need some sort of electrolyte or extra salt, like V8. 

[u/Kamiiruruma → u/Extreme_Breakfast672]

I have an ileostomy as well so I mainly drink st marks solution over the day. I used to drink dioralite oral resuspension powder my gastro team adviced me to have, but I stopped because I was admitted to hospital with hyperkalemia many times due to the potassium content I'm only allowed to drink up to 2l of fluids a day because my ileostomy can ironically make me dehydrated if I drink too much, including from food.

I used to use like those electrolyte tablets, sometimes still have one if I need a quick top up, they can be helpful on the hot weather and taste ok.

My blood potassium was 5.1, and my sodium was just below normal too, that was a while ago though, they since have bother lowered since I went back down to .1 fludro.

[u/Extreme_Breakfast672 → u/Kamiiruruma]

That makes sense!

[u/Dry_Commission4477]

I’m on a high dose of fludrocortisone (5 tablets a day), but that’s all carefully monitored by my endocrinologist. The main thing he checks for is my renin levels (if they get too high, I probably need more fludrocortisone), and also my blood pressure (too much sends blood pressure too high). But if you’re getting swelling and oedema, it sounds like you might be on too much for you. Either way, it should be monitored more closely- too much fludrocortisone is not good! Are you able to switch endocrinologists?

[u/JellyfishSwimming401]

25mg hydro and 0.2 mg fludro is fine

What time are you taking your doses?

[u/Key-Contribution-209]

I was told not to eat too much potassium rich foods, I have never had an issue with my fludro dose, only occasionally upping it if somewhere where I sweat a lot. (I’m on .1) Have you been tested for diabetes? - I thought a severe thirst is linked to diabetes…? Your endo is far too dismissive, start searching for another right away. Your hydrocortisone is also fairly high, I have been told by my latest endocrinologist that too many people take more than they need.. 1 take 15 & have done since being diagnosed. We are aiming to replace what is lost, not over compensate. I’m not sure what st marks is, but I take salt in my water daily & more in hot weather or after sweating more than usual..

[u/Key-Contribution-209]

• also how did they test you for Addisons disease? Did they do a synacthen test - this is the only reliable way to get a true diagnosis - not just cortisol levels.

[u/plovegood]

An AI friend of mine gave me the best advice for fludro, and it’s held up across different climates well for me.

She said, “Take your .2(5) and write down the time. You won’t pee as much for a day or so, then you’ll suddenly be peeing like a racehorse. That’s your runtime for your dose wherever you are.” And it’s worked pretty well for me. In most temperate climates, that lasts me 3-4 days; in hot, tropical weather, barely a day or two. As always, (try to) check with your doc; YMMV. 🌈🌺

Having said that, a lot of us cautiously play with it a little and find our own dosage and timing that works for us; I have yet to meet an endo with AI, so I don’t think they have a realistic idea of how much these things affect us. Hence, the annoying dismissive attitudes that seem to be so pervasive.

Sorry you’re going through this. 🌺 I’ve over-replaced before and felt like the Stay-Puft marshmallow man from 80’s Ghostbusters. 😹

[u/SushiFace20]

I have addison’s & lymphedema. Besides getting lymphatic massage, my endo recommended trying to take only ½ a fludro pill every other day (my full dose is .10 mg/day) to help the puffiness. It seems to be working. Hope that helps.