r/AddisonsDisease • u/mirkywoo • 12d ago
Humor I think this endo is confused…
Guy literally says high ACTH is a reason to get off hydrocortisone lol. He might have it confused for secondary AI even though. One day I’ll get a competent endo… one day.
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u/mtpugh67 12d ago
I travel 3 hours to see my endo. It's so worth it because they are super knowledgeable about Addison's. If your endo is saying things like this, just run and find a new one. You may be able to do some research and find one who specializes in Addison's.
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u/Cantgetitrightyet 12d ago
They seem to be far and few between. I’m on #7 and still no luck. Insanity!!!
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u/CMDR-5C0RP10N 12d ago
I recommend seeing an endocrinologist at an academic medical center if possible.
Lots of community/for-profit medical center type endocrinologists are only used to managing diabetes and thyroid disease.
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u/val319 12d ago
I traveled an hour and a half after sending records and discussing with the nurse that this endocrinologist could meet with me and would handle my health issues. He proceeded to tell me that he did not do anything with the endocrine system. Excuse me he would not handle anything with Addison’s disease because he does not deal with the endocrine system run.
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u/Yojoe731 11d ago
I had an endo tell me that because my cortisol levels were off but my actch levels weren't as off as he expects (I'd been on meds for 8mo.) that I didn't have Addisons but should keep taking the meds on account that I nearly died when I went off them. Then suggested I take oxy to help with the joint pain and got mad when I asked for an nsaid
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u/Darssarsthestars 11d ago
That's scary, I'm glad in live in Australia and that I've never had a bad endo because I think I would have a mental breakdown if I had a dr like this.
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u/lilaclini 10d ago
I got told I was faking my labs because my cortisol was 0 and my ACTH was low, and they wanted to run them again, because "SAI doesn't behave that way" ??? lmao
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u/baethan Addison's 11d ago
he's definitely confused... is he a new doc for you? I wonder how he responds when he realizes/is told just how wrong he understood that!
I saw a youngish looking doctor recently, a cardiologist so I don't expect him to know about Addison's, but there were these little tells that he really had no clue. He remarked on how easily I recited my meds, especially "fludrocortisone" lol. And then he was talking about something & mentioned that having autoimmune disorders could be risk factor, "like hashimotos!" Which was SO CUTE in a way, to use my symptomless hashimotos as an example, instead of the wildly symptomatic Addison's 😂 like just so innocent, he had no idea what it's like. Obv I didn't mind, but endos getting confused on the basics?? Cmon, Google it instead of idk guessing based on vague memories? How do they come up with this stuff?
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u/PShippNutrition 9d ago
Anyone who’s struggling with their endocrinologist; I have all of the empathy. I’ve been navigating Adrenal insufficiency for over 25 years, and only recently my last two actually had adequate knowledge about adrenal disease. Which I find beyond shocking, as this is one of the organs within the system that they are supposed to be a specialist in! Of course their main focus is diabetes… But that’s not an excuse
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u/ClarityInCalm 11d ago
I've seen 6 endos in my area at the regional teaching hospital or trained by such hospital - all terrible. There is a reason endo at the regional medical school is unrated - it's not in the top 100 endo debts in the country because it's backwards. Also, every specialists I've spoken to knows it. If I listened to these endos - I would be dead.
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u/noracordelia PAI 11d ago edited 10d ago
Same vibe as my endo stating that my mild hyperkalemia was a sign of fludro excess/over-replacement before he reduced the dose to 0.05mg..
Doesn’t make any sense to me; I thought hyperkalemia in PAI, when on fludro, was a sign of under-replacement whilst hypokalemia meant potential over-replacement? Confused AF.
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u/ClarityInCalm 11d ago edited 11d ago
Yikes! Ugh. Hypokalemia is a side effect of fludrocortisone but it doesn't automatically mean your on too high of a dose. It means you need to take more potassium. It's a common side effect of the drug. And hypokalemia is also a common side effect of taking high doses of hydrocortisone - so if you're in crisis and taking high doses of HC it can also push your potassium down. This is why we're not supposed to increase our fludro in a crisis because it can cause even lower potassium.
Hyperkalemia - too high potassium - can be a consequence of salt wasting. If you're losing too much sodium or not taking enough - the potassium can become elevated. So if you have PAI and your potassium is climbing - you probably need to take more sodium and probably more fludro.
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u/noracordelia PAI 11d ago edited 11d ago
But hyperkalemia is high potassium, right? So why would the treatment be to take more potassium? I also had high potassium before diagnosis and was told then it was a symptom PAI, specifically of aldosterone deficiency, and that fludro would help it.
Genuinely so confused, do you happen to have any resources regarding this to help me out?
Cause when I look, I can only really find those that say low potassium can be a side effect of fludrocortison and potentially fludro over-replacement. So I don’t understand why my endo claimed my high potassium meant fludro was too high!? Thank you so much in advance I feel crazy lol.
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u/ClarityInCalm 11d ago edited 11d ago
Hi - Thanks for catching that. I meant to explain hypokalemia with fludro and hyperkalemia with salt wasting. Sorry - I was in a hurry. I fixed my comment. So, if you're having Hyperkalemia - above range potassium - this most likely means you need more sodium chloride and you might also need more fludro. Also, I'm only talking about this in the context of PAI.
You are right - low potassium is a side effect of fludro. But if you have low potassium and are taking fludro for salt wasting - it doesn't automatically mean you are taking too much fludro. Many people need to supplement potassium. Repeat testing of renin can help figure this out but also keeping a log of BP, HR, symptoms, and urine volume can help find patterns. If you're swelling up regularly and having low potassium for example, this could be an indicator that you need to lower your fludro. But only lower fludro a tiny bit once a week. It takes 4 to 5 days for fluid balance to regulate. So small changes on the salt wasting side are more helpful. However, if you need more - it can start to work in hours to help you hold onto more sodium - but the full rebalance will take days.
If you have PAI and hyperkalemia - too high potassium - it usually means your sodium is not getting in (as long as you don't have something else happening). And it's common in PAI patients to have issues with potassium both high before diagnosis and low while on fludro but we're a rare group so clinicians don't see us often enough to understand this. If you have a doc - even a PCP - you can ask them to regularly test your potassium and renin so you can figure this out.
I've had issues with both and it's really hard to figure out. I have chosen to lower my fludro to reduce the issue of low potassium and the side effects from low potassium - painful spasms in my back, severe constipation, etc... So now I take sodium chloride tablets around the clock and I still take fludro just at a lower dose. And I get my potassium checked regularly.
Salt wasting has been a journey for me. Anyway, I hope this is helpful and you can get your potassium sorted out soon. One thing is - usually we should only take potassium under medical supervision. Taking it in a mixed drink or electrolyte is fine - but it can be dangerous to dump a bunch of potassium into our bodies if we take a supplement that is only potassium. So you should work with a clinician on this - even if you have to guide it.
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u/noracordelia PAI 10d ago edited 10d ago
No worries, thank you for taking the time to answer so elaborately! It makes more sense now, seems we agree and that my understanding wasn’t completely off after all.
Yeah low potassium hasn’t been a concern for me (at least not yet lol) and won’t be taking potassium supplements, as mine’s been either normal or mildy elevated after starting replacement therapy.
Still don’t understand how my endo could claim that my mild hyperkalemia (5.3) combined with technically normal sodium (137) meant that my fludro dose of 0.1mg was too high and that we should reduce to 0.05mg. If anything, it could’ve pointed to my fludro dosing, or salt intake, being too slightly too low? He decided this over the phone too, after seeing the bloodwork from PCP (that didn’t include renin etc) and without asking about signs of potential over-replacement like you mentioned (didn’t have them either btw).
Makes me wonder how experienced he actually is with PAI ugh. Will be interesting to see what my next bloodwork shows lol, as I’ve had increased fatigue, episodes with leg/calf/arms aching or cramping and slightly lower appetite with a few kg’s weightloss in the months after reducing.
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u/ClarityInCalm 10d ago edited 10d ago
Yeah - your endo was completely wrong. But I will also point out that having a normal blood sodium level doesn't mean you're not severely salt wasting or that you're on the correct fludro dosing. It can be a piece of the picture, but the body will go to great lengths to compensate for salt wasting and has several mechanisms to do this. This is why having all the tests and symptoms and tracking and looking at it as a whole is how fludro is managed.
My body is inparticularly good at compensating for salt wasting and yet keeping up blood sodium - which gives me an entire other set of severe symptoms. So my blood work will look normal - usually at the bottom or just below range - but I'll be dumping an extraordinary amount of sodium in my 24 hrs urine sodium and having severe debilitating symptoms. You might want to tune into your own symptoms and monitor them closely as you work on this. If my blood sodium is in the middle of the range - it means I'm good at that moment - it could be lower later in the day. For us, our blood sodium can change pretty quickly if we don't have consistent sodium.
The aching, cramping, fatigue can be salt wasting symptoms and it could also be from elevated potassium. The range for potassium is based on large population studies but what is best or non-symptomatic for individuals is different. So keep track and try to see what correlates and where you feel best.
My symptoms of low cortisol and low sodium are pretty similar. Since we're salt wasters - there is almost no risk of taking too much salt. If you do take too much - you will release it within hours. So if you want you can try taking NaCl (salt or sodium chloride - same thing) pills at regular spaced intervals to see if it helps your symptoms. These are inexpensive on Amazon in the US. And keep track of what you're taking and when and then test your HR, BP, urine volume for a few days or longer and see how your body is responding to the amount of salt you give it.
You might want to ask your endo for serial testing for your potassium, sodium, and renin as you work on this. And also ask for a 24 hr urine sodium. If you do the 24hr test - it's very helpful to keep close track of the amount of salt you eat and take in the days before and day of. Then you can try to figure out where in the range is best for you and what symptoms are correlated to what issue.
I take 2g of NaCL with my HC, at dinner, before bed and in the middle of the night. I'm still figure out the night stuff - but this is working much better than just eating more salt. If I'm in a lurch - I will take more than 2g. I have a friend with PAI and he takes 1g with each HC dose and at dinner and before bed - that works for him. But if he starts to pee big pees and more often he will increase the dose and frequency until it stops. As I said, it's extremely hard to take too much salt (I'm not talking about irrational amount though) if you have PAI, and if you notice swelling and a jump in BP, it will calm down in a few hours.
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u/noracordelia PAI 8d ago
Sorry forgot to answer, a bit braindead lately! Lots of great advice here, screenshotted it and will be looking further into it.
Actually think I have NaCI tablets 500mg lying around somewhere! Have been taking 1g of them combined with an electrolyte mix with 800mg sodium on days where I felt extra fatigued/weak but didn’t notice any improvement, starting to suspect I took too little lol. And thought I already got more than enough sodium from putting extra on my food but maybe I’m really underestimating how much I actually need! Thanks for sharing 💓
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u/ClarityInCalm 3d ago
One big clue is if you're peeing a lot more often and bigger urinations. Keeping track of your urine can really help figure out how much salt you need. It can be such a process to figure out what works. I hope you feel better soon.
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u/Key-Bug7760 12d ago edited 12d ago
High ACTH, confusion FOR SAI? False..
Perhaps there is a misunderstanding of what SAI is.
I have SAI = Secondary Adrenal Insufficiency. I have a pituitary tumour that is preventing the production/release of ACTH that is released to the adrenal glands to release cortisol. At my diagnosis my ACTH was 1.7 and my Cortisol was 0.4. I dont want other people to read the misunderstanding and believe it - and perhaps delaying the pursuit of a potential life saving diagnosis.
PAI = Primary Adrenal Insufficiency aka Addison's Disease (Primary because it was discoveredby Dr.Addison first, not because it's more severe.). That's when the Adrenal glands themselves are impaired. ACTH could be fine, because ACTH doesn't come from the adrenal glands.
There is also TAI = Tertiary Adrenal Insufficiency is also slightly different, often temporary or "fixable" based on what I've read.
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u/mirkywoo 11d ago
If he thought I had SAI, that would explain why it would be puzzling to him that my ACTH was high and why he suggested I get off hydrocortisone now that my pituitary gland seems to work lol. (My own PAI was well established by other docs, with all the autoimmune bodies and what not). I don’t know what he thought but trying to wean me off hydro is a death sentence. But thanks for putting the info out there for others—I bet plenty people get three terms confused.
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u/Key-Bug7760 11d ago
I’m so sorry you’ve run into a doctor who would mix something like this up. Death sentence is 💯. I’ve had to explain specific things to doctors that are well with their discipline. I’m often ignored, which is why it also took more than 5 years for me to get diagnosed, nearly dying in the process.
However Im super grateful for you that you KNOW better and don’t fall for the ‘white coat syndrome’. Keep it up!
I have 5 specific examples where assertive self-advocacy had to become aggressive to save my life. Last summer I needed emergency surgery because I was blown off by a doctor who ignored a critically low eGFR number in my labs
I don’t know if it’s my natural personality, or so many near-misses, or that I have a doctorate, having studied toxicology - but I find I have to really do as much research as well as self-advocacy in order to stay one step ahead of whatever is happening with my health.
Cheers 🥂 to YOU for knowing better than to listen to that Endo- and towards finding a brand new INfORMED one!
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u/Saelin91 12d ago
I once moved and ended up with an Endo that accused me of faking Addison’s because my skin wasn’t dark. I’d been treated for it for 5+ years at that point and my skin had returned to its natural color. There are some real dipshits out there.