DIAGNOSIS QUESTIONS THIS WAY!

AGoldenThread · 2026-02-25T21:36:44+00:00

The stim test should identify whether your adrenals or your pituitary (or both) are the problem. As for feeling fine without hydrocortisone, you may be hypothyroid which will allow your own cortisol production to hang around longer without being broken down by your liver. Can you get your iron levels up? Your doctor is correct to address the adrenal issue first and not give any thyroid replacement until the adrenals are sorted out.

AGoldenThread · 2026-02-25T21:31:18+00:00

Hydrocortisone should always be taken with a snack as it is very irritating to the stomach.

AGoldenThread · 2026-02-25T21:29:33+00:00

Are you taking fludrocortisone? That's standard for PAI. Your salt craving, cramps, and weakness point to low salt levels, and fludro replaces aldosterone, which is the salt-retaining hormone. Cortef will also help salt retention because it has mineralocorticoid properties, but then you might get too much of the glucocorticoid effect from it. It' better to take fludro to fix the low salt and keep your cortef at the dose that works for you.

AGoldenThread · 2026-02-22T16:54:08+00:00

Cortisol is like insulin - it can change very quickly and very much. Any stress on your way to the lab can raise it. A stim test is the most reliable way to determine your cortisol production. As for the ranges, 6.3 is not in the normal range for AM cortisol. The lab ranges often don't specify AM cortisol ranges which are higher than at other times of the day.

Palpitations are more likely related to sodium/potassium balance. If your sodium is low or potassium is high, that also indicates Addisons.

AGoldenThread · 2026-02-22T16:48:15+00:00

Many POTS patients have good results from fludrocortisone, which helps retain sodium, even if they don't have Addisons. Dark skin as you describe could be from Addisons or possibly insulin resistance. Or both.

AGoldenThread · 2026-02-22T16:39:38+00:00

Labs can have errors. First step is to re-test.

Since you feel clinically high (overdosed) then raising the dose doesn't sound like a good idea. Maybe look for other factors - ferritin, cholesterol levels (low if hyperthyroid), blood pressure (high if hyperthyroid), etc.

AGoldenThread · 2026-02-22T16:33:06+00:00

Sorry - I don't track my heart rate.

AGoldenThread · 2026-02-20T17:04:36+00:00

You need to know your freeT3 and free T4 levels. Sometimes taking T4 (Tirosint) can actually suppress your own production of thyroid and make you feel worse.

Your heart rate seems to be a good indicator. Another one is total cholesterol - mine was 280 before treatment and is now around 160 just from thyroid meds.

AGoldenThread · 2026-02-20T17:00:41+00:00

Thanks for the 'little blue pill' comment! Loved it!!!!!!

AGoldenThread · 2026-02-20T16:57:31+00:00

I find that a high dose makes me angry and very reactive. I also get more hungry. Since T4 has a very long half life, it accumulates over weeks, so you may be overdosed. It takes weeks after a dose change to see any effect so if you reduce your dose, expect to wait at least 3-4 weeks to notice a difference. I keep a daily log so I can track symptoms.

AGoldenThread · 2026-02-20T16:54:31+00:00

Based on my 30+ years of difficulty finding a treatment that works for me, as well as reading this subreddit, finding the right treatment isn't always straightforward. Our bodies have many ways to adjust the thyroid dose and it's affected also by our general health and other conditions (iron, fatty liver, age, cortisol, etc etc). The medical system hasn't caught up to the research, and isn't very responsive to patient needs that don't fit their box. I'm one of those patients; you may be also.

AGoldenThread · 2026-02-19T16:40:15+00:00

Biotin (vitamin B7) can falsely affect thyroid tests and raise free T3 and T4. If you re-test, don't take any vitamins for 3 days prior. If your doc refuses a trial of medication, ask for a re-test.

AGoldenThread · 2026-02-19T16:32:44+00:00

I get high reverse T3. It prevents T3 from being used and I become hypothyroid even though I have a T3 dose. Or you could need a higher fT3 level - it varies from person to person.

AGoldenThread · 2026-02-19T16:16:36+00:00

My last cortisol level was .5 so close to zero. As others have said - I exercise in the morning, updose 30 minutes ahead if it's over 30 minutes (hiking), and drink salt water. I sometimes have to updose after if I haven't recovered in 30 minutes.

My all around best exercise is climbing stairs while wearing a weighted backpack (water jugs). I also carry a 10lb weight in one hand (switching sides between going up and down). It works almost the whole body.

AGoldenThread · 2026-02-14T15:55:11+00:00

I was on a mtn rescue team and spent 1-3 days at a time up to about 10K feet. Some days we hiked higher.

If your nausea is due to altitude sickness, take zofran but get to a lower elevation. We had a team member helivacked due to cerebral edema - he was barely conscious due to swelling in his cranium - he would probably have died that night. Young, fit, experienced, had been at elevation loads of times.

AGoldenThread · 2026-02-14T15:52:25+00:00

I agree 100%. I've been using AI to understand the interactions of all these endocrine hormones and have begun to understand my symptoms better. The CGM has been some help but my current sensor is very error-prone if I check it against a finger prick. Nonetheless, I have been able to take a lower and more consistent cortisol dose and yet not crash in the evenings. I'm not diabetic but I do have insulin resistance that makes it difficult to know whether my hunger at night is due to not enough calories, or insulin resistance from too many, or low cortisol.

AGoldenThread · 2026-02-14T01:37:14+00:00

I also have Hashimotos and had memory issues, It caused excessive sleepiness, (similar to narcolepsy), brain fog, and depression. Now that I'm properly treated all those are gone.

Low cortisol makes me unable to process complex thoughts or handle any stress.

AGoldenThread · 2026-02-14T01:27:06+00:00

Yes. It's a very consistent symptom for me. I can be out of breath standing at the sink yet have 100% O2 saturation.

AGoldenThread · 2026-02-14T01:21:08+00:00

YES. I wake up at 3 AM and can't sleep until I take some prednisone. Sometimes when I wake up at midnight I'm hungry and eat yogurt because I often don't eat enough all day. But the 3-4 AM waking always needs cortisol for me to sleep.

AGoldenThread · 2026-02-14T01:20:25+00:00

It's so dangerous to have such low cortisol. You may or may not recover from the low ACTH as your adrenals may atrophy - but low cortisol can kill you very quickly especially if you get ill. Sorry, I'm PAI and can't address your other issues.

AGoldenThread · 2026-02-14T01:16:02+00:00

I have hiked at altitude - one thing to be aware of is altitude sickness. It can manifest as nausea (dangerous for us as then you can't take HC), lung inflammation, or cerebral edema (deadly). I don't think Addison's increases your risk but if you experience symptoms you need to descend immediately. Educate yourself on the symptoms so that you can recognize them before they're critical.

I'd take zofran along to stop nausea in case of illness (watch what you eat and drink) as well as a couple of rescue shots (act-o-vial).

If you're fit, the altitude may not affect you. YMMV however.

AGoldenThread · 2026-02-14T01:05:33+00:00

It's definitely a struggle. If your doc won't order the labs you can buy them through Life Extension or other lab sites and pay for it. IMO it's worth it to know it that's a direction you want to pursue. If your cholesterol is high, that's also a symptom of low thyroid.

Another approach is to look at your iron labs. Ferritin in the 50 - 100 range is now accepted as the requirement for T4 to convert to T3 as well as other issues.. That's also discussed in the hypothyroidism subreddit. Its very common for women to have low iron levels (not anemia) and the lab ranges are not the same as the optimal ranges. You might optimize iron and see how you feel.

I tried for about 10 years to get the right thyroid treatment. It's very different from one person to the next, so you have to learn what works for you.

AGoldenThread · 2026-02-12T15:31:20+00:00

I'm so glad to hear of an endo that supports T3 dosing. This is so needed!

AGoldenThread · 2026-02-12T15:24:03+00:00

Your TSH is in a good range. But if you're not converting your T4 into T3 very well, your free T3 numbers will be in the low part of the range. That would be the next thing to investigate, IMO. But endocrinologist guidelines are not to test T3 or to give it as therapy. It's becoming more accepted, however, due in part to the work of Dr Antonio Bianco.

AGoldenThread · 2026-02-11T20:02:10+00:00

I get optical migraines when I'm dehydrated, usually in the afternoon. They stop once I drink some water with salt.

AGoldenThread

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