Prednisone helps my fatigue

[debs]

@cujet I have to admit I am jealous when I see people posting about having these tests done. Someone is taking you seriously and knows what tests to order. Every time I've suggested having my adrenal function checked they give me "that look", glance at my skin (for signs of Addison's), ask me how much I alcohol I drink (I don't), then send me to the lab to rule out Cushing's. And I never return to their office. Is this an endocrinologist who is treating you?

 

[cujet]

Yes, it's the "endocrinology" department at Cleveland Clinic that ordered the testing, which includes multiple endo's and physicians assistants. The order was by my endo, and seconded by the PA.

Don't be jealous, they ABSOLUTELY REFUSE TO TREAT ME.
It's hard to express just how awful I do without treatment.

I met with my Dr. friend today at the airport and he yelled at me. Told me to do what I need to do to feel better. Which of course is to take prednisone. He reviewed the labs and wants me to take 10mg AM and 5mg PM for 3 weeks. Then 10mg AM from then on.

I feel better already. Not perfect, but I did not fall asleep today!!!

 

[debs]

Yes, it's the "endocrinology" department at Cleveland Clinic that ordered the testing, which includes multiple endo's and physicians assistants. The order was by my endo, and seconded by the PA.

Don't be jealous, they ABSOLUTELY REFUSE TO TREAT ME.
It's hard to express just how awful I do without treatment.

I met with my Dr. friend today at the airport and he yelled at me. Told me to do what I need to do to feel better. Which of course is to take prednisone. He reviewed the labs and wants me to take 10mg AM and 5mg PM for 3 weeks. Then 10mg AM from then on.

I feel better already. Not perfect, but I did not fall asleep today!!!

I am glad to hear that it's helping!
I don't understand, though, when you say they refuse to treat you. You were tested and got a prescription. I would call that "treatment". No?

 

[cujet]

Debs, over the last 6 years, I tested at below or at the lower limit for AM cortisol. The Cleveland Clinic has continued to re-test me over and over again. Twice, my AM cortisol levels rose a fraction above the lower limit and they said they were "encouraged". ACTH has always remained low range, around 10 or so on a scale of 10 to 60.

However, those 2 "encouraging" tests were unfortunately run on days I felt less awful. Despite this, any exercise or activity would push me into crippling fatigue.

My Dr. Friend (a pilot) saw me pass out a few times while at the hangar. He reviewed my lab results and is the one who yelled at me to take prednisone. I have not been prescribed anything and I get prednisone from the aircraft first aid kit.

Maybe my Dr. Friend is right, or maybe I need some other treatment. But the pred helps immensely, that's for sure. I may try a bicycle ride this morning.

 

[debs]

@cujet, Ok, now I really get what you're saying. I am surprised, honestly. I thought they only treated women like this.
You will likely find helpful info on the thyroid forums about adrenal fatigue. Adrenal exhaustion is a better word IMO. There is no magic bullet. I have used licorice root (tea), it does help. They say if we have one autoimmune disease may get another. Find an 80-year old rheumatologist, why? because they've seen it all. Tell him/her everything you've been though. And if I were you, I would get antibiotics and take them while you're taking steroids. I took a course of budesonide not knowing, and I sure did learn alot about tick-borne infections following that.

The tests never seem to catch the lows. I was sooo sure my AM cortisol would be "off the chart low" my first test (years ago), but just as we approached the lab, I watched as my side of the car was nearly T-boned at 45 mph. The adrenaline rush had me feeling almost normal, as my blood was drawn 10 minutes later. My cortisol test turned out to be low normal. Sigh.

oh, in my experience, if the lab work is outside normal range but within 10-15%, they're like "meh, you're fine".

 

[cujet]

Just heard from the Cleveland Clinic. No treatment offered.

My endo there quit, so I must start again as a "New Patient". They have not been helpful and only want to test me. Never to try to treat me.

Debs, your idea to find an older experienced Rheum is a great idea. I will do exactly that.

Also, with my untreated condition, I'm unable to work effectively. I've been getting away with a lot due to me being the boss. But things have changed there. Early retirement is in the works.

 

[debs]

Just heard from the Cleveland Clinic. No treatment offered.

My endo there quit, so I must start again as a "New Patient". They have not been helpful and only want to test me. Never to try to treat me.

Debs, your idea to find an older experienced Rheum is a great idea. I will do exactly that.

Also, with my untreated condition, I'm unable to work effectively. I've been getting away with a lot due to me being the boss. But things have changed there. Early retirement is in the works.

Your HPA axis is being suppressed. For 6 years, you've been slowly deteriorating, without progressing to adrenal failure, which is what they've been waiting for. You're still making these hormones, just tiny amounts of them. I went through this too. It feels like death. You will get through it. Something is suppressing your HPA axis. ( I remind you, no wheat, you have Hashi's. Eat red meat, and all the salt you want. Low carb, because your adrenals can't handle it, but some carb, because your adrenals can't handle it. Ironic, I know. I am living this myself. ) Antibiotics are the cheapest and quickest way to find out if you have a sneaky bacterial infection. (which is what I suspect)

 

[cujet]

1) Your HPA axis is being suppressed.

2) Antibiotics are the cheapest and quickest way to find out if you have a sneaky bacterial infection

1) I think that's correct. Probably autoimmune related.

2) I've been on various doses of antibiotics over the last few years for infections, skin conditions and as preventative measures after dentistry. No change what so ever. Even a month of Doxy did nothing helpful.


I've been back on pred since friday and I feel 80% better. It's a big clue as far as I am concerned.

 

[debs]

1) I think that's correct. Probably autoimmune related.

2) I've been on various doses of antibiotics over the last few years for infections, skin conditions and as preventative measures after dentistry. No change what so ever. Even a month of Doxy did nothing helpful.


I've been back on pred since friday and I feel 80% better. It's a big clue as far as I am concerned.

Go find that old Rheumy! Hope you find some answers soon and relief!

 

[jaminhealth]

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For me at 81, I've cut my iburprofen in half to 1 every 6 hr.
Cut thyroid support in half, I take Naturthyroid. Took 120mg for years, now take 60mg.

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This could be a real changer for you. It's not a quick fix, but we didn't get old and damaged overnight.

I would NOT use those steroids...personally, they do more damage. Let me know if you want to know more. j

 

[jaminhealth]

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