Is it "normal" to have extreme fatigue/sleepiness with Cortef taper?

Gingergrrl

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I was wondering if it is "normal" to experience extreme fatigue and sleepiness (like you could literally sleep 24/7) when doing a Cortef taper?

Fatigue & sleepiness are not my usual symptoms and the symptoms that literally disabled me for 4+ years, and led to me using a wheelchair, were actual muscle weakness (of my lungs, diaphragm, arms, neck, etc), shortness of breath, POTS/ Dysautonomia, and then MCAS/ allergic reactions/ anaphylaxis. None of that has returned (which I am thrilled about) and this is a new thing.

I can't figure out what is causing it unless it is the Cortef taper. I had taken 15 mg of Cortef for 3.5 years (for MCAS/ allergic reactions) and my prior two tapers were epic failures. In the first attempt, I became allergic to food within one week, and with the second attempt, I almost had a full adrenal crisis, so both were stopped. Both of those were prior to my overall remission from treatment.

My Endo (who treats my Hashimoto's) literally did not think it would be possible for me to get off Cortef (ever) b/c it had triggered secondary adrenal insufficiency. But I created an incredibly SLOW taper schedule that would last between 1 to 1.5 YEARS! In a little over six months I have tapered from 15 mg/day to 7.5 mg/day with no issues.

I am now almost done with the next phase of the taper (to 6.25 mg/day) and in about two more weeks, I will be at a daily dose of 6.25 mg. Because everything was going so well, I had shortened each phase of the taper from seven weeks, to six weeks, and now to five weeks. I have no intention of shortening it beyond five weeks for the remaining phases of the taper.

I Googled the symptoms of an adrenal crisis (to remind myself what happened with the second failed taper b/c it is a bit of a blur now) and that absolutely is not happening now. What I am experiencing now is pure fatigue, lethargy, and actual sleepiness where if I lie down, I literally fall asleep for hours. So I set my alarm so I do not nap over two hours b/c I don't want to mess up my sleep cycle.

I did blood work yesterday morning (thyroid, adrenals, cortisol, ACTH, iron, etc) and if the numbers are bad, I am sure my Endo will tell me to slow down the taper (even though it is already at a snail's pace 🐌). I did e-mail him but I suspect he is waiting to reply until he receives the results of the blood work (which should be around Mon or Tues of next week).

I wanted to add that this current issue is not due to stress or depression (in spite of my dad recently being diagnosed with cancer only one year after my mom dying of cancer). I am very aware of what I am feeling emotionally but this is purely physical fatigue and actual sleepiness. (I just wanted to throw that in since it is a logical question to ask given the situation with my dad and taking him to several appts last week, arranging his surgery, etc). But this feels like it is from the Cortef taper b/c I have not changed any other meds or supplements.

So far, I can push through it and am having dinner w/a good friend tonight as planned (but she is picking me up and driving which is great). If the muscle weakness, shortness of breath & POTS had returned, then I would feel that we have stretched the Rituximab interval too far. But none of that has returned, and this is a new symptom for me, so I don't think it is related to stretching out the Rituximab interval and the only thing I can think of as the cause is the Cortef taper.

But why would I be able to taper from 15 mg to 7.5 mg of Cortef per day w/no issues and then in this next step to 6.25 mg/day, would I suddenly have issues? I REALLY want to be off Cortef so I can stop wearing the bracelet that says "Adrenal Insufficiency: Needs Cortef" (if someone found me in an emergency). I also want to stop it b/c of the weight gain :mad:. I'm no longer gaining weight but am completely unable to lose any of the weight that I gained from the Cortef no matter how strict I diet. The adrenal insufficiency is secondary to the Cortef and my Endo said that it will reverse itself once I am off the Cortef and my brain will start making it's own hydrocortisone again.

I'd love to hear any feedback on this and need to be functional for my dad's upcoming surgery and other planned events in April and May. I hope I do not sound too whiney or complainy... I just want to figure out what is going on and what to do about it. As usual, I wrote a novel :xeyes:
 

Judee

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Can you go back up to the last level you were at to see if the new symptoms abate? That might tell you if even this very slow taper is too fast.

I'm just thinking that you might have to stay at certain levels longer than others to allow your body to adjust. It seems like you do have a lot of stress for your body to cope with right now so maybe you will have to go into a holding pattern on the taper for a while before continuing it.

I know...not what you want to hear...two steps forward; one step back. :(

Don't get discouraged. You are making progress. You just don't want to make the whole house of cards topple when you are doing so much better overall. Just my opinion.

Of course, make sure to clear everything with your endo first.
 

Gingergrrl

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Can you go back up to the last level you were at to see if the new symptoms abate? That might tell you if even this very slow taper is too fast. I'm just thinking that you might have to stay at certain levels longer than others to allow your body to adjust. It seems like you do have a lot of stress for your body to cope with right now so maybe you will have to go into a holding pattern on the taper for a while before continuing it.
Thank you so much for your reply @Judee and I am going out in a few minutes in case I don't reply again tonight. I really like what you said though and it makes a lot of sense. It is not that the current stress I am experiencing is "causing" the fatigue vs. that maybe with this additional stress, my body needs the current level of Cortef (which is already 50% of what it was before) and is not yet ready for the next cut in the taper?

I have never had to do "stress dosing" with Cortef but I know this is commonly done. I definitely do not want to increase the Cortef but am now wondering if in two weeks when I am at a daily dose of 6.25 mg, if I should put the taper on hold and just stay at that dose before starting the next phase which would be to reduce to 5 mg per day (over the next 5-7 weeks).

I know...not what you want to hear...two steps forward; one step back. :(
:bang-head::bang-head::bang-head:

Don't get discouraged. You are making progress. You just don't want to make the whole house of cards topple when you are doing so much better overall. Just my opinion.
I don't feel discouraged so much as confused and I don't want to to ANYTHING that could topple this whole house of cards (to use your term which is a good description of my situation). I use the term "remission" for lack of a better word but it still feels very fragile to me I do not want to mess it up.

Of course, make sure to clear everything with your endo first.
Strangely enough, he just sent a brief reply to my e-mail and said that all of my labs "looked good" and that it was okay to continue to Cortef taper. I am shocked that he got the labs so quickly b/c I just did them at Lab Corp yesterday. I sent him a quick reply asking if I could have a copy of them for my records and to send to my main doctor, and also asked him if he felt this new fatigue was related to the Cortef taper. If the labs are all okay, it is very tempting to just continue as planned.
 

Judee

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The only thing is I was on low dose DHEA. My doctor actually wanted me to titrate up to as much as 40mg a day. I could only handle 5mg and stayed on that for years but he never told me that my SHBG levels went very low while I was on it.

For women that can be a precursor to diabetes. I only found out after I needed to get copies of my records from him that my levels were low.

I had a feeling that the DHEA was what was causing that and so I self-weaned off of it and retested some time later. My levels were back in the normal range.

Some other symptoms went away as well such a lot fewer hypoglycemic incidents. Plus, before weaning, I couldn't sleep on my right side because the moment I turned over, I would experience something I called "spiral down." It was like I was about to faint. That completely went away after going off the DHEA.

I know DHEA helps some but just wanted to mention my experience as something for people to be aware of. For me at least, I find I am super-sensitive to things. Not sure what the mechanism is. I suspect it causes a release of too much norepinephrine for me and that burns out my system more quickly leading to other issues as well as a crash. That doesn't mean it wouldn't work for someone else. It just didn't help me.
 

brenda

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@Gingergrrl

I would not underestimate the stress you have been through in the past year, as it all adds up and losing a parent, going through a divorce, dealing with the serious illness of another parent, the sickness of your pet, at the same time as dealing with your own illness, add up to quite a few points on the scale, and I would advise increasing your dosage for now.
 

Gingergrrl

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Thank you all for the replies :hug:

@Gingergrrl -- You may want to check out this thread I started several years ago. I don't recall much of it at this time, but If you want to quote anything I said over there, feel free to bring it back here to keep it in this discussion:
I looked through your thread @Wayne and like @Judee, I actually don't tolerate DHEA. A former naturopath recommended it for me in 2014 (this was over a year before I ever started Cortef) and I tried 5 mg/day but it caused me agitation, worsened tachycardia/POTS, insomnia, etc. I know many people tolerate it well but I wasn't one of them! About a year later I made another attempt (just in case it could be useful) but got the same reaction.

The only thing is I was on low dose DHEA. My doctor actually wanted me to titrate up to as much as 40mg a day. I could only handle 5mg and stayed on that for years but he never told me that my SHBG levels went very low while I was on it. For women that can be a precursor to diabetes. I only found out after I needed to get copies of my records from him that my levels were low. I had a feeling that the DHEA was what was causing that and so I self-weaned off of it and retested some time later. My levels were back in the normal range.
I did not know about it being a precursor to diabetes (and Cortef is also in that category). In addition, I have the GAD65 autoantibody which can also lead to diabetes. In my case, my Endo has tested me for every known diabetes marker known to man and I am negative and my blood sugar runs low on the hypoglycemia side. My Endo said I am not at risk of diabetes now, but it is another (long-term) reason for me to get off Cortef. My main reasons are to stop the secondary adrenal insufficiency (which was acquired from Cortef and I don't have primary adrenal insufficiency or Addison's), and to make it easier to lose the weight that I gained from Cortef.

My Endo replied to my e-mail today and said that his office will e-mail me my blood test results tomorrow. He said that he did not think my fatigue/ sleepiness was from the Cortef taper b/c my current blood Cortisol level was 9.5 and last time we tested (about 3-4 mos ago) it was 7.3. The "normal" range for Cortisol at Lab Corp is 6.2 to 19.4, so I am still on the lower side, but it is going up while doing the taper so that is a relief.

I am curious what my ACTH level is now and will find out when I get the results from his office. Last time (3-4 mos ago), my ACTH level was only 11.3 (and the "normal" range is 7.2 to 63.3) so it was in range but very low. I am hoping that it has gone up but don't know yet.

I think my main question for anyone reading this thread (and I'm putting it in red just to make it easier to see) is:

Is it "normal" to feel fatigue/ sleepiness during a Cortef taper (meaning it is possible that this is a temporary side effect of the taper that will go away)?

If it is considered safe and temporary, I can live with it. I just want to make sure I am not causing any harm. Per my Endo, my tests were normal and I should continue the taper. He feels the long-term risk of being on Cortef is very dangerous, and he wants me off of it, but he just didn't think it was possible based on my first two failed tapers (but they were WAY too fast and this one is ridiculously slow).

I realized that I misspoke in the first post and in only one more week, I will be at a daily dose of 6.25 mg Cortef. My plan for now is to re-evaluate how I am feeling once I am at that daily dose (6.25 mg) and if I should then stay at that dose a little longer (for my brain to acclimate to it) or start the next cut to 5 mg (which will take about 6 wks).

I would not underestimate the stress you have been through in the past year, as it all adds up and losing a parent, going through a divorce, dealing with the serious illness of another parent, the sickness of your pet, at the same time as dealing with your own illness, add up to quite a few points on the scale, and I would advise increasing your dosage for now.
I don't underestimate the stress of my situation at all and see a therapist weekly and have a lot of support. I'm not trying to minimize anything that I have been through in the last 5-6 yrs and often don't even know how I survived it all. But this current issue feels physiological from the Cortef taper. That is why I was curious if fatigue is considered a "normal" or "common" (yet safe) side effect of a Cortef taper?

I'm guessing that there are different levels of the taper, and this must be the point where it becomes more challenging than the earlier parts, b/c my brain has to create more hydrocortisone on it's own. I don't plan to increase the dose unless my allergic reactions returned or I had signs of an adrenal crisis (and then I would of course increase it and don't want to do anything dangerous).

Thank you again to everyone for all of your feedback!
 

Wayne

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@Gingergrrl -- Have you by any chance considered whether pregnenolone might be helpful as you go through your taper? Here's a link to a Mercola article entitled, "Understanding Adrenal Function". Below is the introduction:

The benefit I see from supplementing with pregnenolone is that it makes the body's raw materials needed for the body making cortisol more readily available. If you don't need extra cortisol however, your body won't make it.

From what I've read in the past, the body apparently has a high tolerance for even elevated pregnenolone supplementation, and will just sort of ignore it if it doesn't need it. (That's how I recall it anyway--not that my recall is always very good!) :rolleyes:

STORY AT-A-GLANCE
  • Pregnenolone is a steroidal hormone manufactured primarily in your adrenal glands from its precursor, cholesterol, and has a number of beneficial effects, including enhancing your memory and reducing stress-induced fatigue
  • Pregnenolone is the precursor from which nearly all other steroid hormones are made, including DHEA, progesterone, testosterone, estrogens, and cortisol
  • If your adrenal glands are stressed, your pregnenolone levels will drop; there are many causes of adrenal stress, including psychological stress, inadequate exercise or sleep, illness or injury, or inadequate nutrition
  • Symptoms of adrenal stress include low body temperature, weakness, irritability, depression, poor concentration, excess hunger, insomnia, and a number of others
  • Maintaining strong adrenal function is important for optimizing your cortisol level, controlling blood sugar, insulin levels, and overall physical fitness
 

Gingergrrl

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@Gingergrrl -- Have you by any chance considered whether pregnenolone might be helpful as you go through your taper? Here's a link to a Mercola article entitled, "Understanding Adrenal Function". Below is the introduction:
I will definitely take a look at this and have never tried Pregnenolone and have no idea if I would react badly to it like the DHEA. I would ask my Endo and/or my main doctor before trying anything new though. If Pregnenolone would require another long taper off of it in the future though, I would lean toward not trying it.

Symptoms of adrenal stress include low body temperature, weakness, irritability, depression, poor concentration, excess hunger, insomnia, and a number of others
That is interesting and I have had very low body temperature for several years (from Hashimoto's and dysautonomia) so that symptom is not new for me. I am not having any muscle weakness (which used to be one of my #1 symptoms) vs. actual fatigue which is new for me. I don't think I am having any of the other symptoms and definitely am not having insomnia and slept 12 hours last night from being so fatigued from this Cortef taper (in spite of having coffee last night after dinner w/my friend).
 

bertiedog

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@Gingergrrl

I would not underestimate the stress you have been through in the past year, as it all adds up and losing a parent, going through a divorce, dealing with the serious illness of another parent, the sickness of your pet, at the same time as dealing with your own illness, add up to quite a few points on the scale, and I would advise increasing your dosage for now.
As someone who needs 6 mg Prednisolone plus 2.5 mg h/c daily I really do agree with Brenda. I wouldn't under estimate what prolonged periods of stress can do to one's need for cortisol, be it natural or in the form of Cortef.

I had two separate adrenal crisis when I had stopped my steroid way back in 2005 and ended up passing out on the toilet with uncontrolled vomiting and diarrhoea after about 3 months of being off the steroid and could have died if I had been alone. Don't want to scare you @Gingergrrl but feel I should mention what can happen and it really isn't worth risking it at the present time when you have the stress of your Dad to deal with.

Of course it doesn't mean you cannot go on with your taper once everything has settled down as I am sure it will and I don't mean to be negative either! You know that I think you have done fantastically well.

Pam
 

Gingergrrl

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I wouldn't under estimate what prolonged periods of stress can do to one's need for cortisol, be it natural or in the form of Cortef.
I agree and don't want to underestimate it either and it is the reason I e-mailed my Endo (who has treated me since 2013 for Hashimoto's). I was surprised when he felt that the fatigue was not related to the Cortef taper b/c I feel strongly that it is and am curious what my ACTH level is. He told me to continue w/the taper but I am now thinking that I will remain longer at the 6.25 mg dose before making the next cut in the taper so I can acclimate to this dose.

I had two separate adrenal crisis when I had stopped my steroid way back in 2005 and ended up passing out on the toilet with uncontrolled vomiting and diarrhoea after about 3 months of being off the steroid and could have died if I had been alone. Don't want to scare you @Gingergrrl but feel I should mention what can happen and it really isn't worth risking it at the present time when you have the stress of your Dad to deal with.
When I started to have symptoms of an adrenal crisis (with my second taper attempt a few years ago that was an epic failure), I paged my Endo which was the first and only time that I have ever paged him. He told me to immediately stop the taper and told me that I could have died from it (so I know that he takes this very seriously).

He is the one who told me that I must wear a Medic Alert bracelet that says "Adrenal Insufficiency: Needs Cortef" so I had my bracelet re-made to say this (I already had one that said "anaphylaxis risk" and some other stuff). He believed that I would never be able to taper off Cortef and that the MCAS reactions would return but so far they have not and it is just fatigue.

I have no allergic reactions, nausea, diarrhea, muscle weakness, confusion, agitation or anything of concern. But fatigue is so unusual for me that I am monitoring it closely. I do suspect, which was confirmed by a friend, that once I got below 7.5 mg of daily Cortef, that it triggered this fatigue.

Of course it doesn't mean you cannot go on with your taper once everything has settled down as I am sure it will and I don't mean to be negative either! You know that I think you have done fantastically well.
You do not sound negative at all, and I do not take anything in this thread as negativity or criticism, so please do not even worry about that! If I have to stop the taper, I will, I just prefer not to if I am not in any danger and can live with temporary fatigue and taking naps during the day (if that is the worst of it).
 

Gingergrrl

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I wanted to post an update that I spoke to a close friend who has taken Cortef for many years and he felt that my very recent fatigue/ sleepiness was due to reaching this stage of my Cortef taper. He explained that since I’d taken 15 mg of Cortef for 3.5 yrs, it reduced the number of glucocorticoid receptors (I'm hoping that is the right term :xeyes:) so even though my Cortisol blood test was in the "normal" range, I am not yet able to utilize all of it which causes the fatigue.

I know I did not explain that well but I replied to the e-mail from my Endo (with that new info that I learned re: the receptors) and he agreed! He said that he now does think my fatigue is from the Cortef taper going too quickly (once I reached below 7.5 mg) since I have not changed any other factors that could lead to the fatigue.

He agreed that I should slow down the taper (vs. initially telling me to continue with it since my blood Cortisol was 9.5 which is in the normal range). So instead of stopping this phase of the taper (6.25 mg) at five weeks, I am going to continue at the 6.25 mg level for a minimum of two more weeks and then re-evaluate the fatigue.

If it has improved and I feel “normal” again in two weeks, I will start the next phase of the taper. If it has not improved, I will continue with the 6.25 mg even longer, or maybe alternate every other day between 6.25 mg and 7.5 mg. But, if it has actually gotten worse (with additional adrenal symptoms besides fatigue), then I will go back up to the 7.5 mg every day. It is frustrating but I want to do this taper safely and maybe with each new phase, I now need to make it longer vs. shorter. It's all a bit of trial and error but my ultimate goal is to get off Cortef and it will happen.

Thank you all so much for your feedback and support. I have never had such difficulty tapering down on any med in my entire life as Cortef! I wish I had never started it but back in 2015, we were so desperate to find anything that could help control my allergic reactions and anaphylaxis that I understand why we did (and it was not this Endo who initially prescribed it but is now monitoring the taper).
 
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Wayne

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If it has not improved, I will continue with the 6.25 mg even longer, or maybe alternate every other day between 6.25 mg and 7.5 mg.
@Gingergrrl -- Here's another thought: While I take 20 mg. Cortef/day, I occasionally take more if I feel I'm doing more than normal, or I'm feeling more stressed than normal. The normal increase is about 5mg-10mg, and usually for a day or so, and I've never had a difficult time returning to baseline.

There were times however--usually when trying to do a cross country trip in years past--where I'd have to take extra Cortef for several days. My first day would start at abouit 30mg, 2nd day 40mg, 3rd day 50, etc. A couple of times I took as much as 70-80 mg. When I finally got back to Oregon, I'd taper in reverse order, but at a slightly faster rate: like 75 to 60, 60 to 45, 45-30, then to 25, then to 20. Only took a few days.

Again, I never had a problem returning to baseline. You describe your thoughts on adjusting your taper as going from one set amount to another for a matter of weeks. I wonder if it might work to only increase it for a day or two, and then go back to your taper schedule. -- Like I say, just a thought. I'm hoping to someday do a taper of my own, but I don't feel I have things "situated" in my body yet to seriously consider that at this time. I feel I need to somehow put a few other pieces in order first--not sure whether that will happen however. :rolleyes:
'
 

Gingergrrl

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The normal increase is about 5mg-10mg, and usually for a day or so, and I've never had a difficult time returning to baseline.
For whatever reason, my body/ brain is extremely sensitive to the tiniest changes in the Cortef and it was only a reduction of 2.5 mg (one day per week) that led to my two prior failed Cortef tapers several years ago.

So for this taper, each reduction was only 1/4 pill (1.25 mg) and I started with just one day (Monday) and then took the full dose on the other six days per week. Then the second week, I did the reduced dose for 2 days per week. Ultimately, it took seven weeks to reduce to all 7 days of the week at the new dose (and then I would stay at that new dose for a full week). I would never be able to make a dose change of 5 to 10 mg at a time and it would just be too large for me. I know this must sound very strange!

A couple of times I took as much as 70-80 mg. When I finally got back to Oregon, I'd taper in reverse order, but at a slightly faster rate: like 75 to 60, 60 to 45, 45-30, then to 25, then to 20. Only took a few days.
I think we just have very different levels of what we are able to tolerate. My entire dose was 15 mg and each cut is 1.25 mg over a seven week period. I was trying to reduce each cut to a five week period (vs. seven) but am no longer going to do that b/c it was too fast and resulted in this insane fatigue & sleepiness.

It sounds like you were able to cut by 15 mg over a few days and then return to your baseline which would be impossible for me. I don't know if it relates to brain chemistry, or the number of glucocorticoid receptors, or some other factor?

Again, I never had a problem returning to baseline.
I wish that was the case for me!

I'm hoping to someday do a taper of my own, but I don't feel I have things "situated" in my body yet to seriously consider that at this time. I feel I need to somehow put a few other pieces in order first--not sure whether that will happen however. :rolleyes:
I don't think you should feel in any rush to do a taper and each person should listen to their own body. In my case b/c the Cortef triggered secondary adrenal insufficiency, my doctors wanted me off of it b/c my MCAS was in remission and it was not really serving the purpose for what it was originally prescribed. In my case, it was not prescribed for Addison's or any type of fatigue vs. for allergic reactions/ anaphylaxis.

I also had to get many other things in place before this (third) attempt at a taper was even possible. And I wasn't even sure if this attempt would be possible but I made it from 15 mg to 7.5 mg with no issues. It wasn't until this most recent reduction to 6.25 mg that I started having this intense fatigue and sleepiness. I am now at a daily dose of 6.25 mg but have no intention of reducing it any farther for now. I will stay at this dose for two more weeks and then re-evaluate the fatigue. If any new adrenal symptoms appear, I will have to go back up to 7.5 mg although I really hope not to have to do so!

I do have a question for you (and for anyone else following this thread) now that I have gotten my labs back from my Endo this morning. My Cortisol and ACTH are both within the "normal" range, my thyroid numbers are good, my iron is good (no longer anemic) and even my Vitamin D is decent at "36".

However, my "DHEA Sulfate" (which I assume is the same DHEA that you were mentioning @Wayne) was flagged as low at 18.4 and the range is 41.2 to 243.7 :eek: ... I e-mailed my Endo to see what he thinks of this but I am now concerned and also confused b/c I don't think I really understand the connection between DHEA and Cortef (Hydrocortisone). I checked my last labs from Dec and my DHEA was at 55 which is well inside the range so it has gone down. Could this be the reason for my fatigue?

I did not tolerate even 5 mg of DHEA back in 2014 but it is possible I could tolerate it now. I am going to Google this shortly but am unclear if it is something like HC where once you start it, it could keep you in secondary adrenal insufficiency and would require a massive taper to come off of it. My goal is to come off of a lot of the meds that I am on (and none of them require tapers like the Cortef) so I don't want to start anything new that requires a taper. I hope I am making sense!
 

Gingergrrl

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Instead of creating a new thread, I wanted to post an update (in this thread that I started back in April) that I have decided to re-start my Cortef taper tomorrow.

I had stopped the taper on approx April 6 (2019) as I explained in the posts above and I stayed at 7.5 mg/day for the rest of April, all of May, and all of June. I did not have any further problems and I am hoping that my brain has fully adapted to the 7.5 mg/day dose so that I can safely re-start the taper.

I am going to do it extremely slowly so each stage of the taper takes a full seven weeks. If I am successful, in seven weeks from tomorrow, I will have reduced my dose from 7.5 mg/day to 6.25 mg/day. My end goal is to completely get off Cortef, no matter how long it takes. My original dose (that I took for approx 3.5 years before starting this taper) was 15 mg/day.

I was able to reduce the dose (very slowly) from 15 mg/day to 7.5 mg/day but that is where I got stuck and started having symptoms of an adrenal crisis when I tried to go lower. But now that this has completely stabilized, and I stayed at the 7.5 mg/day dose for almost three months, I am hoping that I can re-start this taper. If it does not work, I will have to find a way to do it even slower :bang-head:
 

Gingergrrl

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I wanted to post an update in my thread that I have successfully completed the most recent step of my Cortef taper and am now taking 6.25 mg all seven days per week! I'll be doing blood-work tomorrow morning to check all my levels and will stay at the 6.25 mg dose for one more week before starting the next cut to reach 5 mg per day (which will take approx another seven wks).

I'm hoping that there is not anything in my lab results that would make my Endo stop the taper but I'm expecting everything to be okay. He increased my Armour dose a few weeks ago from 15 mg/day to 30 mg/day but I don't think it is related to the Cortef taper. We want to keep my TSH level between 1-2 and it had gotten above 3 and we didn't want it to go any higher b/c I do better when it is between 1-2.

We are checking all of my thyroid levels tomorrow, as well as Cortisol, ACTH, Iron, Vit D, etc, and some other tests that I requested like Leptin (and my Endo is always open to checking whatever I want as long as it is not too weird :xeyes:) At this rate, I will be completely off Cortef in about 7-8 months which would make me VERY happy!
 

Gingergrrl

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I've decided to keep updating this thread until I have finished my Cortef taper (but no one needs to reply unless they want to :)). Last week I successfully completed the 8th phase of the taper where I am taking 5 mg per day so this week I've started the 9th phase (to reach 3.75 mg per day) which will take approx 6-7 weeks.

I still have a way to go but when I am FINALLY off Cortef, my Endo is going to wait about a month and then have me do the ACTH Stim test to make sure that I can indeed create hydrocortisone on my own. If I can, then I no longer have to wear this bracelet that says: Adrenal Insufficiency: Needs Cortef and I will feel much safer to (eventually) travel.

My Endo increased my thyroid med (Armour) to 45 mg/day and I re-did my thyroid blood work yesterday. Depending on the results, I'll either stay at 45 mg or will increase to 60 mg/day. I've also been seeing a dietician at my Endo's office and have lost ten lbs! I'm seeing her once a month and feel like things are heading in the right direction. I am thrilled at the idea that I will (eventually) be off Cortef even though this taper will have taken about 2 yrs by the time it is over! My Endo did not think it was possible, but now he does, b/c I have done the taper so slowly (I need a snail emoji :_)