My doctor has started me in the last month on low doses of hydrocortisone. He is doing this based on clinical evidence of insufficiency, but I'm getting a saliva test done soon.
I was wondering if there are others here on the same type of regimen?
The first three weeks it seemed to work wonder and greatly helped my stamina and problems with fatigue. But now I'm back to being extremely exhausted, even though my doctor upped my dose a tiny bit.
In case it helps people to respond with advice, here is a bit more on my situation: My problem, if it is a lack of naturally produced hydrocortisone (confirmation is pending the test results) is seconday; I've been sick for years from Lyme disease, which causes me symptoms such as those commonly associated with chronic fatigue and fibromyalgia. (I went years undiagnosed, so the infection spread and has become difficult to eradicate.)
Hydrocortisone has half life that you need to know - so not only do you have to take the right dose but you have to time it right.
Plus if you are taking replacements, HC may not be all you need - the body may also want the mineralcorticosteroid replacement that it needs to hold on to salt. Other supplements like dhea can help well-being too - so all those need to be tested for and used if needed.
One does not usually replace and then test - it is the other way around... as replacements cause atrophy. A saliva test is not sufficient for a lifetime of replacements but a formal stimulation test is needed to see the condition of the adrenals and how they react under stress.
If you have other issues then it is very hard to tell what symptoms come from where... but testing accurately and well can help but it seems your doc is not doing you a favor.
I can see why my doctor's actions seem suspect, but in defense of those actions, the dose he started me on was very very low (5 mg per day, which has been increased to 7.5 mg per day, 5 in the AM and 2.5 in afternoon) and intended to help me manage symptoms while waiting for tests to be carried out. As you note, hydrocortisone has a short half life in the body, so my doctor said that as long as I don't take it the day of testing (and the testing is done reasonably soon after starting) then the results won't be affected by my use.
My fatigue has been severe lately, jeopardizing my ability to work. And I have regular blood work that rules out other causes. (I've had some "barely out of range" thyroid results, but nothing that would explain the severity of my fatigue symptoms).
Also, it is not intended that I will require a lifetime of replacements, instead it is intended that I will only need this while treating my primary condition of Lyme disease. It is not uncommon for people with Lyme to experience (short-term) adrenal insufficiency. I don't know the physiological reason for why, I'll ask my doctor about it next time.
As for the testing, I will ask about a stimulation test. Hopefully the saliva test is at least a good place to get started.
Hydrocortisone is typically not an antidote to fatigue given the side effects. After all, when you take it you get the buzz, but it is not real energy and it has a detrimental effect on other hormones plus the bones, eyes, muscles... so unless you really know it is your adrenals, from my point of view, I think steroids are *evil*. I come at this point of view having had Cushing's disease and my body destroyed by the steroids - and my adrenals were removed to resolve the Cushing's and now I must take the steroids to live. It is now a balancing act to take what I need - too much and too little are bad.
Now, your dose is way below what is believed to be a normal replacement dose of 20mg (although new studies are coming out to show the new replacement dose should be much lower but it will be years before that is accepted).
Thyroid ranges changed years ago to .3 to 3.0 - so with that range - how is your TSH? If your doc just tested TSH and T4, he did not test enough. Also there could be other issues like vitamin D, b12, iron and other minerals and vitamins that may be low - have they all been tested? What about calcium etc?
Of course, adding Lyme to this mix makes things much more complex...
I'm sorry to hear about your bad experience and Cushing's. I agree that in general I don't like to use steroids, but I also don't like feeling too tired to hold up my head. I agree, I could just be feeling a positive response to the hydrocortisone even though my adrenals may not be the correct underlying problem, and that is of concern to me.
Before I was diagnosed with Lyme disease it was thought that I had an autoimmune condition, so I was given prednisone. That stuff made me feel great in the short term, but shut down my immune system and sent the Lyme into overdrive. Not as serious as your experience, but my own reason to feel cautious about steroid use.
My TSH varies from high 2's to low 3's, and my T4 is barely out of range in the hypo direction, and at one time I had a low positive for Hashi's antibodies. But when I took my test results (ordered by a general practitioner) to an endocrinologist, he told me that the severity of symptoms that I described didn't fit with my only slightly abnormal labs, and went on to say that he would not treat me for a thyroid condition. He basically laughed me out of his office, and it wasn't the first time that a doctor did so. (For example, most doctors don't believe that Lyme can have long lasting effects.)
As for other levels, my D has been very low (single digit, I don't recall the units but the normal range starts around 30) in the past but I supplement that now and it is regularly monitored, as are my b levels, vitamins and minerals. No other deficiencies have ever appeared. I do always show high c-reactive protein and/or high SED, but those are (to my understanding) non-specific inflammation markers, and could just be a sign of my ongoing issues with Lyme.
I'm extremely frustrated by my health, and when I first started the hydrocorisone it was the closest I felt to "normal" in years. I'm improved from my lowest health point, but I'm still sick a lot of the time, often struggling a great deal to get through the day. So I'm hopeful that there is a potential here to address a problem and improve my quality of life. But again, I appreciate you pointing out the risks need for caution.
I wanted to add on, in case it leads to other ideas or advice, a bit more detail about my fatigue and daily patterns.
Often I feel my best in the AM. I get up around 5 AM and I always drink coffee in the morning, and I often exercise in the AM. Sometimes, I'll feel great at the gym and do up to 1 hour of cardio. I'll continue to feel great immediately afterwards. However, often I then "crash," and become extremely lethargic. This can happen as early as late morning (10 AM) or later, around 2 PM. When this sort of "crash" occurs, I am often not able to be mentally productive for the rest of the day, and sometimes I need to go home and rest. I become mentally foggy, feel unusually heavy, and get all over body aches. I tend to "crash" like this less when I don't exercise, but it can happen even on days when I do not attempt to exercise.
On a good day, when I don't suddenly crash, I instead tend to deteriorate slowly and always feel sick by late afternoon. The type of symptoms I get include burning sensations in my skin, facial flushing, disorientation (or "brain fog"), tingling (mostly in my face, hands, feet), and stiffness (bilateral, hands and feet/knees are the worst).
Anyway, it makes me feel crazy that in a given day I can go between such extremes in my energy. I sometimes avoid exercise, but I guess I feel obligated to do it even if it does make me crash because I spend so much time in bed and feeling slugglish, I feel like I need those bursts of activity to compensate.
And again, for all of my complaining, I'm actually a lot better than I was a couple of years ago, when my symptoms were more severe. I work full time now (which I had to stop before when I was more sick), I just wish I could make more progress towards a full recovery.
So the only thyroid tests you have had are the silly panel which tells very little about the thyroid - for that you need the free tests... not even an ultrasound with a positive antibody test? Your docs have been rather sad but we all have those stories - why those endiots go into endocrinology and stop thinking defeats me. A good endo realizes a low TSH is better anyway.
My cushie cycles sounded a lot like you - energy comes and goes and it hurts. High inflammatory levels as well. Low D. Are you taking a lot of D3 to make up the shortfall?
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