Source
r/AddisonsDisease•
linernotes

Newly diagnosed, looking for advice on questions for Endo

Personal Experience

Hi everyone! I’m recently diagnosed with Addison’s, and will be meeting with my endo in a couple of weeks. Ive been suffering for 10 months, and only got an Addisons diagnosis after my hyperpigmentation was noticed. It’s a new world for me, so I’m wondering if there are any other questions than the one’s listed below I should ask - or more specific questions, if you have anything to recommend. I’m a type 1 diabetic so I already have a relationship with this doctor, thankfully.

  • I’m on hydrocortisone (7am - 10mg, 2pm - 5mg). I feel better in the mornings but I crash around 3pm each day. Are there better/different dosings I should consider? Other drugs? What about schedules?
  • what other parts of bodily function are affected by addisons? E.g Hormones? Vitamins?
  • what to do in emergencies
  • I have a constant headache since starting hydrocortisone. Is this a common side effect?

I appreciate any insight the group has in what else to ask (or answers to the questions, if you have them!)

Posted Aug 21, 2019, 1:10 PM UTC

327
nspitzer•

First, sorry you are joining our fraternity but we are all here for you. When I first posted here I was directed to the Adrenal Insufficiency Support group on Facebook which has some really really good files on dosing and what to do when you are sick.

Below is some general advice I can give however IANAD and only your endo can really tell you everything. Also each person is different so it may take a little experimentation to figure out what works best for you.

​

  1. Are you on Fludrocortisone? In addition to cortisal and cortisone (which Hydrocortisone replaces) the adrenal glands also produce aldosterone which maintains your salt balance. Without that you run the risk of getting your salt and potassium balance way out of wack. In extreme cases it can cause stroke-like symptoms. That's actually how I was diagnosed with Adrenal insufficiency. My sodium/potassium levels got so out of wack my motor neurons couldn't work and I couldn't walk or talk.

2)Your natural levels of cortisone actually peak early in the morning (4-5am or so )and then slowly drop off. Personally I try to take my first dose no later then 6am but YMMV. One other thing is that if you have been feeling really really bad for months like I was the "little better" you feel in the morning may not actually be that great its just you feel better relatively to the 10 months of sucky you were feeling so it would not hurt to take maybe 15 in the morning and see if you feel even better. My endo said (and the general advice I see here) is you dose until you feel better. All my research seems to indicate anything below 25 or 30mg a day of Hc isn't going to have any negative side affects but again your endo is the best one to give dosing advice.

​

A couple of things that are extremely important to know:

  • It is unbelievably critical that in case you are injured first responders know you are adrenal insufficient. Since you are already diabetic I assume you already have a medical alert bracelet or necklace but you need to get a new one that states you are both diabetic and adrenal insufficient. In your case if you had an adrenal crises the first responders might spend time thinking you are having an issue with your suger level when its really an adrenal crisis and delay giving you the HC you need.
  • A fever over 101 is an automatic DR appointment or emergency room visit.
  • Make sure your endo gives you a prescription for a couple for Solu-Cortef emergency HC doses. These are an emergency 100MG dose of HC you can use in case of an emergency to enable you to be stabilized until you can get to an emergency room.
  • Getting the flu (real flu, not a common cold) is a very serious issue that has a good chance of landing you in the emergency room so make sure you get a flu shot.
  • Throwing up is bad also. If you throw up you need to take a double or triple dose of HC. If you keep throwing up you need to go to the emergency room.
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WikiTextBot•

Aldosterone

Aldosterone, the main mineralocorticoid hormone, is a steroid hormone produced by the zona glomerulosa of the adrenal cortex in the adrenal gland. It is essential for sodium conservation in the kidney, salivary glands, sweat glands and colon. It plays a central role in the homeostatic regulation of blood pressure, plasma sodium (Na+), and potassium (K+) levels. It does so primarily by acting on the mineralocorticoid receptors in the distal tubules and collecting ducts of the nephron.

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linernotesOP•

this is so informative, thank you! You make a great point on the "little better" being comparative to a shit 10 months. I was diagnosed by a different specialist, so I think he's hesitant to give me too much leeway with dosing until I see my endo, so I'm guessing that's why my starting dose was more conservative. I'm not a small person so I can easily see needing more.

re: throwing up: I also have a condition called gastroparesis which, when flaring up, causes me to throw up. Is the vomiting a concern simply because the meds won't get absorbed, or is there another reason to be concerned about throwing up?

I really appreciate you taking the time to share this knowledge. I was diagnosed with diabetes as a young adult, and the one thing I regret is not asking enough questions at the beginning. So this is really helpful to keep my appt on track and help get myself a bit more understanding.

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imjustjurking•

Vomiting is a double concern. With Addison's it is very easy to become dehydrated and if you can't take your meds then you will get very sick very quickly.

How often do you get flare ups of your gastroparesis?

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linernotesOP•

Ahh I didn’t think of dehydration.

Flare ups happen every couple of months, very severe ones a couple times a year (as in vomiting for days and not being able to have anything but liquids). I’ve been historically medicating with THC:CBD which has helped, but I stopped a few months ago while we tried to figure out what was wrong with me.

I’ll be sure to discuss this with my endo, and my GI doc. See if there are any other tools to help keep it at bay. It’s annoying because the best GP diet is the worst diabetes diet lol but I’m sure there’s a balance somewhere.

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rare_snark•

Throwing up is a concern because you're not absorbing the hydrocortisone, my general rule of thumb with sick days/times are

Cold/flu - double dose for 3 days and then fast taper Vomit once - double or triple dose Vomit more than once - hospital Diarrhoea 1-2 times - extra 10-20mg Diarrhoea more than twice - hospital Vomit and diarrhoea close together - hospital

There are other circumstances where you need to sick dose, for example I have IBS so when I have a flare I sick dose for 2 days.

Watch out for other symptoms that you need to sick dose also because they aren't always obvious and can sometimes be subtle. Some of mine are dull back pain, pins and needles, headache, feeling mentally retarded, sore jar/ear, generally getting the shits for no reason etc.

It's not just physical sickness you need to be careful about. Things like heat, lack of sleep, stress/anxiety could also warrant sick dosing but it's all up to your body and how it reacts to stress. You'll figure out your symptoms pretty quickly.

I was going to do a seperate post but Ill put it here. 15mg is a low conservative dose. I am on 38 up from 30 because I was feeling like ass on 30. My endo wants me to go down to 25 as a test so I'm slowly tapering down. I would ask the endo if your dose is appropriate. Once you find that sweet spot you'll be happy it's just getting there that's the issue. Mine is 20mg upon waking, 10mg 6-7 hours later and 8mg 3 hours before bed. I don't take them at certain times because my sleep schedule isn't solid due to work.

Make sure you always have access to hydro, put some in your car, in your hospital bag, in your purse, even with the local shopkeeper (joke). Because you never know when you'll need some and you'll always need it when you don't have access to them.

There is a pretty good support group on Facebook (someone linked it above) join it and have a read. It's very informative.

Get a medical alert bracelet

Pack a hospital bag because you'll need it. Keep it in your car with things like spare clothes, toothbrush and toothpaste, phone charger etc

Don't be afraid to updose, I was and still am but that's just me trying to be strong, it usually bites me in the ass.

Addison's is rare, some don't understand it or know what it is, I find it easier to say "I have an adrenal insufficiency"

Don't push yourself, if you feel like shit just rest, don't go out, don't mow the lawn, lay on the lounge and watch tv. If you don't rest when you need to you'll slip further and further into a crisis.

This fucking thing is shit, but you manage. In a year's time you'll give other people advice.

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linernotesOP•

Thanks so much for this.

It’s odd because I’m torn between being relieved to finally have a diagnosis, and being pissed off I have (another) life threatening disease to deal with. But I think back to when I was diagnosed with T1D and how far I’ve come since then, I feel less overwhelmed.

Thanks for the dosing information, and sick day guidelines. Also the subtle symptoms! All of which I have now (and have had since this all started months ago). It’s just been the norm for so long that I have no idea what to attribute to Addisons vs. My other crap 😂

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rare_snark•

Honestly the hardest part is trying to distinguish the symptoms, could it be addison's or is it something else, that's what I struggle with. I usually leave it too late to take an extra dose but as I said that's just me trying to battle through it.

Most of those subtle symptoms should subside with either longer corticosteroid use or a higher dose and I suspect the latter will help you more.

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nspitzer•

15mg is a low conservative dose.

When I wrote the original comment I was trying real hard not to say it as I felt it a little to close to giving medical advice but this is absolutely correct and especially if you haven't been given any fludrocortisone this is likely enough to just keep you going until you get to see your endo but not enough to actually make you feel better. Its also low enough even a minor illness could give you a crises. I am much closer to rare_snarks on my dosing.

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ibbleekto•

See if you can get a prescription for an anti-emitic, so that if you feel nauseated you can take them and it will make you less likely to vomit. I use ondansetron. Not sure what is suitable with your other conditions but if you can, it’s best to avoid vomiting.

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linernotesOP•

Yeah good call :) thanks.

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nspitzer•

Glad to help. One other thing to keep in mind is that even more then Type 1 Diabetes, you will quickly find that with Adrenal Insufficiency in regards to how your body reacts to stress and what you need you are the expert in most cases. Don't be afraid to take the lead on your care and speak up, whether its dosing or any other aspect.

I could have died before my diagnosis (no exaggeration) because day after day I just trudged along pushing myself until I literally couldn't anymore and it took 6 months and 2 endocrinologist to get me to the point where people said I was "back to normal". With Adrenal insufficiency being superman ( or woman) isn't really an option because you WILL end up with a crisis. If you are lucky enough to have a SO like me they will also quickly pick up subtle signals so you need to listen to them. My wife can now look at me and just by the minor coloration tell I need more HC. Unfortunately she is also a kindergarten teacher so playing sick so to speak doesn't work for me either :-)

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imjustjurking•

You sound like you're really on top of things already!

Your headache might be an indicator that your steroids are too low, 15mg is a low dose but if you're very slight then it might be enough for you. The headache can also be due to low sodium, with Addison's you will need to keep up your salt intake.

A common dose/schedule would be: 7am 10mg, 12pm 5mg and 5pm 5mg. Everyone is different though so you'll likely have to play around a bit and that might include trying different steroids.

Other hormones are often reduced with Addison's, aldosterone being one of the more important ones as it is involved with your blood pressure and sodium/potassium retention. Many people are vitamin deficient on diagnosis, its worth getting a check up on the common ones like B12, iron etc.

What you do in an emergency is something you'll need to speak to your endo about, depending on where you are you might be given an injection kit (Europe and the UK especially) and taught how to use it. A good rule of thumb is if you're feeling crap then take extra, these strict rules about fever over X amount is nice in theory but if you're ill then you'll likely need more.

Be even more vigilant in keeping an eye out for hypos! If you have a continuous glucose monitor then obviously you're covered.

Do you have a medic alert bracelet already?

As for questions to ask:

Is 15mg a day an appropriate dose for me?

What do I do if I feel unwell?

Do I need fludrocortisone at the moment? (You'll need to have had a blood test and your blood pressure checked)

Do I need to take any vitamin or mineral replacements? (This should be based on recent blood test results)

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linernotesOP•

Thank you! I already have a bunch of vitamin deficiencies (discovered while trying to figure out what was wrong with me) that we're working through. I take B12 injections and am starting iron infusions soon.

I'm in Canada, so my understanding is I'll need to build a kit myself but my doc should be fine with that.

I do wear a CGM (thank god) and a bracelet, but I've ordered new ones. I've definitely noticed more hypos, and needing less insulin. Although I also recently got a new pump that I think functions better than my last one, so it's hard to tell what the root cause is. I'll be chatting with my diabetes team about it.

Thanks again :)

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shoutsmoistly•

I was diagnosed in the last month so I am not far from where you are. I will echo the replies here:

Medical bracelet and emergency solu-cortef.

I keep a memo on my phone of questions I get as I think of them and read it to my Endo when I see them. I write down their replies as well in case I forget. Ask your Endo for "sick day rules" (as mine called them). I got a print out of how to updose or treat myself when ill and at what point I need to inject/go to ER.

You should get a blood pressure monitor for home. I have a small, wrist one I carry with me at all times, as that's a good indicator of when I'm having trouble. Same with a thermometer.

I also carry a small container of extra hydrocortisone and anti-diarrheal medicine/nausea medicine and some powdered electrolyte drink mix.

I printed out the signs of adrenal crisis and what I need in an emergency and gave them to EVERYONE. You need to make sure everyone you spend time with knows how to help you if you can't. I also took those print outs and put one in my purse, one on the fridge, one in our car, etc.

For myself, I was sick for 9 months, lost 40 lbs, and had hyponatremia so severe twice I was tested for a stroke. Luckily, I know my signs of crisis now and even with a sodium level of 116 and 117 and hypoglycemia, each time I was able to communicate and call 911 and advocate for myself. Unfortunately, some aren't and you need to prepare for that just to be on the safe side.

Another thing that might depend on where you live: I contacted my local EMS/Paramedic office and spoke with the trainer. They were receptive and took down my name/address/birthdate/number/medical information so if they get a call about me they know I need IV steroids and saline immediately.

Feel free to message me if you ever need to chat.

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linernotesOP•

This is SO helpful. Thank you for taking the time to write everything out!

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shoutsmoistly•

Not a problem. Forgot to mention something I'm also going to do asap - ask your general Dr to do a CBC on you to check for any vitamin/mineral deficiencies. I don't know about you but having been sick for so long and not eating/digesting well I wouldn't be shocked if I'm deficient in some areas. Also, I too was put on a dosing schedule of 2x a day. I've since realized most people dose 3-5x a day. This helped me a lot. I take my last, smallest dose of HC at 5:30pm.

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Little_Ms_Wise•

I highly recommend joining Adrenal Diseases Support Group (ADSG) https://www.facebook.com/groups/addisons.support

We have files with all those answers!

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linernotesOP•

Awesome, I will join!

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bandana-chan•

I think a dosage of 10-5-5 is better, with the times 7 am - 1 pm - 6 pm. But it's good to talk about that with your doctor, I think he will know a good dosage scheme if you tell him about how you feel throughout the day.

For people with Addison's disease, it's extra important to get enough vitamin D and calcium, because the medicine mostly works in peaks and that could affect your bones.

Also, really eat enough salt. There's no need to worry about eating too much salt, except when you're eating full spoons of course.

The headache could be a side effect, not so much from the medicine itself but maybe from the dosage scheme.

In emergencies you'll need an emergency injection, an SOS talisman and a phone number of your doctor (endocrinologist). You can find videos of how to use this injection on YouTube.

Also, it's important to prevent emergency situations as much as possible. When you know you'll be facing a long/difficult day, add 5mg to your normal dosage. You can do this one time or for the whole day, maybe even 2-3 days, but don't do it too long because long term exposure to high cortisol levels isn't healthy.

You'll find out soon enough which events/happenings stress you out, you'll feel a bit weird in the head, dizzy, maybe even nauseous. But this can be different for each person.

I really hope this helps a bit!

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linernotesOP•

That's very helpful, thank you! Just for clarification - by SOS talisman do you mean a medical ID bracelet? or something else?

It's amazing, I'm not a salt fan but I've been adding more to my diet and it's making such a difference in how I feel.

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bandana-chan•

Yes that is what I meant! Sorry, I'm not English/American.

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linernotesOP•

No prob, thanks for clarifying :)

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BeggarInSpain•
  1. Yes. Typical dosing schedule is 3 or 4 regiment. Another drug frequently used for AI is Predniso(lo)ne. It has longer biological half life, so it's possible to take just 1 dose in the morning.
  2. If you are primary, Cortisol obviously, Aldosterone (you should have Fludrocortisone), DHEA, Testosterone, Pregnenolone.
  3. Use an emergency kit or seek medical help immediately. Let medical staff know you have a rare disease and need Coluf-Cortef + IV fluids.
  4. Yes when being under or overdosed. If you feel cold or your body temp is low, you're likely under-dosed (but you shouldn't be after 10mg in the morning).

If you have DM T1 too, you might want to consider low-carb diet such as Atkin's or keto.

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linernotesOP•

re: #2: I am primary, so this is a very helpful list!

The diet's one I'm concerned about as well - I already have insulin resistance, so I'm concerned about adding steroids into the mix. I eat low-er arb, but I might need to drop it down even more.

Thank you! :)

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BeggarInSpain•

I'm at the lower end of carb intake too and I've read several papers that highly recommended keto diet for DM T1. Utilizing ketones as a fuel overcomes the problem with insuline resistance and blood sugar.

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linernotesOP•

Tbh my biggest challenge is I don’t have a gallbladder, so high fat is very hard for me to process. I’m a mess 😂

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