Adrenal insufficiency caused by Topical Steroids

I would like to know if applying potent topical steroids on my face like betamethasone valerate and clobetasol propionate over a year and a half and suddenly stopping it without tapering it cause adrenal insufficiency?

[chevyself]

just to add am not having hyperpigmentation and had a THS done which was normal.
My main symptoms are backache, legs and arms pains sometimes, dizziness when am standing with headaches, fatigue and shortness of breath which i had a normal chest xray so am thinking i have secondary adrenal insufficiency.
Told my doc about the topical steroids i was using but he dint take me seriously.
CAN SOMEONE PLEASE ADVICE ME ON THIS MATTER

[rumpled]

TSH is a pituitary test that indicates how it is signalling the pituitary. The cortisol equal is ACTH.

The first one I did not find much about side effects that to me as a layman would concern me about adrenal function but the clobetasol propionate says in the warnings that it can cause *Cushing's syndrome* so it has a potent dose of steroid. Cushing's is the opposite of AI. Symptoms can overlap though.

I would taper off that one. I would also talk to a pharmacist if the doctor is not helping you in regards to side effects as they can help you with a combination of medications and any others that you are on. So I suggest that you talk to your local pharmacist with a list of meds.

[chevyself]

I already stopped it for atleast 3 months now but it seems am having AI symptoms since then.. i've been feeling dizzy and lightheaded when standing, my head and whole body's been aching since then and i've been very depressed and lost 6kg of weight but what pisses me most is my doc isn't taking me seriously. he just did a couple of blood tests, CT scan of head, chest xray and said i was completely healthy, he thinks i have tension headaches which i know i dont have.

[rumpled]

Alas, doctors are not always so aware of the power of the steroids that the give and that some people are more effected than others.

They think of one aspect only not realizing corticosteroids effect a lot.

What blood tests were done besides TSH? Sodium would be a good indication. Your best option is to find an endo (although granted, it is hard to find a good one, you may luck out) or switch or another PCP and see if you find a better one.

[Buckupnow]

I have AI caused from steroids.  My symptoms were exhaustion, shortness of breath, irregular heartbeat, excruciating pain below the waiste, muscle deterioration and weakness, tearing and detaching tendons, Low back ache, neck aching, urinary frequency, craving salt, low potassium, hives behind my knees, blah, blah, blah.  My right leg was initially affected more than the left.  

[Buckupnow]

Many doctors choose to ignore AI....my own doctor admits this fact.  They are afraid of repercussions of treating with long term steroids because they are not educated in AI nd don't care to learn.  Most doctor's don't even realize how debilitating AI actually is....it is a life threatening condition which causes excruciating pain for those whose adrenal glands have been shut down by steroid medication.  The cause is exogenous steroid use and the medication to support life with AI are exogenous steroids.  
The doctors in my state ignored my AI and I almost died.  Find a doctor who will listen to you....a hormone specialist, endocrinologist, integrative practitioner, functional medicine doctor....anybody who will listen.

[chevyself]

@Buckupnow
I swear its like your reading all my symptoms out. am exactly feeling the way you felt and my right arm and leg seems to hurt the most.
So how did you get yours cured?

[chevyself]

Did all your symptoms including shortness of breath went away after treatment? And are you still on treatment? If not how long did it take for adrenal glands to recover?

[chevyself]

and i agree with you, not all docs are well educated on AI. my doc said just because i dont have hyperpigmentation then i dont have AI. Seems like he doesnt even know the differencies between primary, secondary and tertiary AI

[Buckupnow]

I do have secondary adrenal Insufficinecy caused from steroids so I have to take more steroids for life.  Many symptoms are relieved by the medications, but I'll never feel like I did before AI.  Hyper pigmentation is not a symptom of secondary adrenal Insufficinecy caused from steroids....it's only a symptom of primary adrenal Insufficiency - Addison's disease.  My adrenal glands have not ever recovered and it's been 3 years.  TSH tests are worthless when someone has adrenal Insufficiency.  FT3, FT4, and RT3 have to be tested for thyroid.  Where do you live?  I would suggest finding another doctor who is willing to refer you to an endocrinologist for cortisol testing, ACTH testing, etc. or find a functional medicine doctor (integrative doctor) who will listen and order the tests for you.  If I could undo what happened to me, I would use the steroids again and gradually taper off them to see if my adrenal glands would work.  

[Buckupnow]

Sorry it took so long for my response....I haven't been back on the site in a while.  The flu or something got me and I had a fever for 4 days.
My right leg was initially most affected but then both became equally painful.  Adrenal insufficiency destroys the connective tissues and for some reason the symptoms seem to be more exaggerated in people who have been damaged by steroids.  I've been dealing with this horrible condition for 3 + years and I'll be glad to help you in any way I can.  I was passed around to 17 different specialists including 2 endocrinologists before a neurologist diagnosed the AI and told me I would have to go out of state for treatment.

[chevyself]

OMG!! then this thing is serious. Thought that secondary adrenal insufficiency caused by steroids were reversible. How comes yours wasn't? Is it still the same with hpa axis supression? because its all over the net that its reversible after some months of cessation or a year.

[rumpled]

If you have *real* adrenal disease, it is permanent. Adrenals cannot be fixed, rested, or all that other stuff. They work, or they don't - but you can be borderline as they start to atrophy from the steroids. It is the same HPA axis. BTW this would be primary, not secondary. Secondary would be a pituitary tumor.

Once you replace on steroids, adrenals stop working as they sense enough replacements and go, great, I don't have to work, and go to sleep. Long enough, they shrink (look at the pathology pics in the health pages under adrenal insufficiency). This period of time is not defined... so it could be the first time you use, or take years in someone else.

Once the adrenals are not working, then usually ACTH will rise and the person will tan as the pituitary tries harder to signal to get more cortisol in the body.

[chevyself]

thought that its tertiary AI if it has to do with the HPA Axis. Do people recover from hpa axis supression not cause by diseases but steroids? and what maximum time does it take?

[chevyself]

It says on the leaflet that hpa axis recovery is generally prompt after steroid withdrawal

[Buckupnow]

Chevyself,  HPA axis recovery is possible for many people if they are put back on the steroids and then weaned very gradually.  I know several people who were fortunate enough to have doctors willing to help them and wean them off steroids.  I also know others who never succeeded.  I went for 2 years without treatment or diagnoses because of the negligence in the state I live in from the medical community.  They passed me around like a football over a 2 year period and I almost died.  I had so much muscle deterioration that I still haven't fully recovered after 8 months on hydrocortisone, thyroid medication, DHEA, and progesterone.  It's been a painful 3 years.  There is the possibility that I may try to wean off hydrocortisone in the next year, but my tissues have to heal some more.  I reached the point where both feet were in walking boot casts and my tendons and ligaments were tearing and detaching just from walking across a room.  Yes, it is very serious.  Younger people have an easier time of weaning off steroids and jump starting the HPA axis than older people do because the pain is not as unbearable in younger people.  Only those with tertiary (also called secondary) know the realities of it.  There is another support group where you could learn some info about it.  Are you using the topical steroids again and have you found a doctor?

[Buckupnow]

I have HPA axis suppression and am very knowledgable about it.....had it for 3 years.  Exogenous steroids are the number one cause of secondary adrenal Insufficiency in the US.  There are many types of adrenal dysfunction so don't be surprised if you get comments from others with different types of AI who do not have any knowledge of AI from steroid withdrawal.

[Buckupnow]

If you have questions you can message me or continue this thread.  So sorry you have this too.....you are young and can probably recover.

[chevyself]

No haven't used the steroid creams for almost 4months now and my symptoms seems to be dissapearing slowly. Am a lot more better than when i just stopped them. all my pains & aches have reduced, the lightheadness isn't as bad as when it just and i've gained almost 3kg back. Are all this sings of recovery? and am not on cortef, heard that its best to let the glands heal on their own naturally.

[chevyself]

i can't believe they selling these creams without prescription. This things are dangerous. the first time i bought them i read on the leaflet about hpa axis supression but never knew it could be this serious. they should really put a ban on steroid creams because they too can destroy lives. WHO THE HELL MADE THIS ANYWAY??????

[Buckupnow]

I agree!  I'm furious about a doctor giving me Prednisone and not telling me what could happen.  I was never told that I could get adrenal insufficiency.

[Buckupnow]

After 2 years my glands still did not work so I and to do something....I'm on Cortef and thyroid meds plus DHEA because it all quit working.

[kevieb]

I have been using betamethasone valerate on my skin for almost 40 years.  I have atopic dermatitis and this particular prescription is the one that has worked the best for me--however, I use a different corticosteroid cream on my eyelids and my lips, when i need it.  Also, I do not use it on a daily basis.

The last time I was given a prescription, it gave me 2 tubes and I had several refills----I never refilled the prescription in a years time.  I have learned to live with my skin condition and tend to only use the cream when my hands really hurt, or when i get a really bad rash that won't clear up.

Why were you given those two RXs to use on your face?

I do have secondary adrenal insufficiency, diagnosed by an ACTH stim test. I personally do not believe it had anything to do with my use of betamethasone valerate over the years, because I just don't use it often enough.

I did have some steroid shots in my heels before my stim test, which led one endocrinologist to pull me off hydrocortison---but my ACTH and cortisol levels had been almost bottomed out before I got the shots---I think that is why my first endo ran the stim test.  I also had two different doctors, and another endocrinologist who did not believe the shots would have shut my adrenals down completely--besides---I have enough other hormones that are out of whack that indicate my problems are coming from my pituitary.

I know that when I was pregnant, my obgyn didn't want me using the betamethasone, but I told him I had used it with all my otyher pregnancies--so he never said another word--and it didn't hurt any of my kids.

My guess, is that if you were using two strong corticosteroids on your face regularly for a year and a half---it could have affected your adrenals---especially since you are feeling better now that some time has passed.

as far as the cortisone creams that are sold without prescriptions---I think you would probably have to be spreading them all over your body everyday for awhile before they would hurt you---they aren't that strong.  i know they do very little for me.  I could be wrong about that, but I don't think the over the counter creams are something you need to worry about.

They have to put the warning on the label because using steroids can affect the HPA axis--they just don't differentiate between the use of physiological doses, which just replace what your body isn't producing, and the big doses that they use for autoimmune diseases and such.  This is why so many doctors don't understand the use of steroids.