Adrenal Insufficiency Community
I am so tired
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I am so tired

i am so incredibly tired I am almost non-functional.  I stopped taking my vyvanse (diagnosed ADD at 40) because it was making me shake so bad after several years of taking it with no problem.  I have switched to a different stimulant that is short acting--it works sort of----I take soma and norco with 1/2 of a caffeine pill for pain--in the past, taking my meds used to actually hype me up for about 1/2 hour--but now I just feel like I am dragging.

I am on 5 grains of NP Thyroid and 30 mgs of hydrocortisone---and multiple supplements.  I am wondering if I should be taking my HC differently.  I have been taking it most recently 10 am 10 lunchtime and 10 3-4 pm.

My DHEA and testosterone and ferritin were all lower than my doctor wanted as of last lab work in october.

I had allergy testing done recently and the doc ran a CBC.   My RBC looked like it was right about in the middle---but almost everything else having to do with red blood cells was on the low end--it has been this way ever since i had my hysterectomy.  I wonder if tghe low end of normal is just too low for ME.  I have been on iron supplements for 6 months.

Any thoughts?
18 Comments Post a Comment
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Avatar_m_tn
I can only address the Hydrocortisone question as I was on it for 18 mths,
You say you're taking 10 mg 3x a day. Before following what I say, you should double check  with a Dr if this will impact on your other meds.

I was on 10mg to 70 mg of HC over 18 mths and remember feeling bad often. Very tired. Very much on edge.

I told the the guy who put me on it, my neurosurgeon, that I thought I would feel better if I spread the dosage more evenly over the day. He replied: what is important is the amount per day you take and not when.
he said: go ahead and vary the dosage times.

I found I performed better by spreading the dose over the day and took it 4x a day: 8am 11am 2 pm and 4pm

Remember never to take much in the late afternoon as it will disturb your sleep. I think 4pm or 5pm should be the last dose and make it small.

Assuming you wake up regularly at 7am or so, why not try

8am 10mg
12pm 7.5mg
3pm   7.5 mg
5pm   5 mg

I don't know if you'll feel a million dollars but I bet you'll feel better than you do now and that is a start :-)

Good luck and get well soon.
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Avatar_n_tn
the dosing schedule you show makes a little mores sense than 7.5 3 x a day,  My doc had originally given me two options of how to take it--but i couldn't remember what the 4x a day one was--so I kind of stuck to 3x a day, occasionally taking a little extra.  He told me that he would tell people the 3x dosing because most people can't remember to take meds 4x a day---i take so many meds all day long that I should be able to figure it out.

Why do you think the schedule you showed me woudl make me feel better

I temporarily can't ask my doctor about my meds--he has been very ill--but the slight change you are suggesting in how I take it shouldn't matter, i would think, since it is so close to what he told me.

thanks--I'll see if it helps.  Should I expect several days before i would notice a difference?
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Avatar_m_tn
Why would changing the times you take the dose help you? Well everyone is different. It was explained to me like headache tablets. Sometimes a bad headache needs 2 tablets every few hours or 4 half tablets if that works better for you. The total consumption is the same so you're not overdoing it with the change in HOW you take it.

I am not a clinician and have no idea how HC works but I can assure you the morning after you  start a new schedule you will feel a bit better. And a few days later you will function better.

Do as I did. CARRY the HC with you all the time. So you'll never forget to take the dose.
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657231_tn?1390151580
A normal body has cortisol peak in the morning and drop throughout the day - so keeping a steady even dose through the day is not normal - and may create a Cushing's type situation.

How you take it does matter. That is why even people who take, for instance, the same equivalent dose in long-acting corticosteroids vs cortef have way more side effects - the body does not get the rest and restorative time it needs at time to make bone, recover, heal etc.
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Avatar_n_tn
I already blew it today with my dosing schedule--forgot wht the times were that you said.  So...I'll do the best I can for the rest of the day and start over again.

yopu said if I normal get up at 7am to start dosing at 8 am--why is that?  is it because that is teh time cortisol is supposed to be at it's highest?

I don't sleep well, so I am often awake long before 7 am--but I usually sit in my recliner and rest--so, I am often up around 6:30---I don't suppose that should make any difference in the dosing since I am trying to copy that * am highest level--am i right?

carrrying my HC with me at all times is a really good idea--I never thought of that, but I have quite a bit because the doc wrote the script out to allow for doubling for illness---so I should be able to carry plenty around with me.

I realize that I have been taking my HC kind of randomly and changing it from day to day--probably not the best idea.

I need a little more clarification.  You said the morning after I started the new schedule that I would feel a bit better--I assume you mean the next morning after dosing it with the schedule you showed me, which would be more close to how my body would be releasing it if I didn't have this problem, so my body would hopefully maybe have slept a little better and have been kept a little more level during the day--the next day I would feel the benefit---Is that what you meant?

Also, you say that a few days later I would function better---why would it take a few days to function better--is this another matter of my body getting used to the idea that it is getting a more natural dosing of cortisol---do the effects of proper dosing take time to take effect?

sorry for the dumb questions--I'm just trying to figure out why I feel so crappy and so tired---and why I rarely ever sleep through the night---part of the poor sleep has to do with several other issues, though, I think.  I sometimes think I wake up from pain, often I wake up because my bladder can't make it through a full night, I also think that my reflux might have something to do with me waking up--but those are all separate issues i am dealing with.
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Avatar_n_tn
rumpled---I have a question about something I once heard you say.  You said something about cortisol coming and going causing pain--what did you mean by that?       I have no real diagnosis  for my chronic pain--we have just been calling it fibromyalgia--but my personal belief is that fibromyalgia is real, but that it is caused by different things for different people.

I am wondering if I dose my HC more naturally to what my body would do if it might make a difference in my pain--probably a long shot, but something to think about.  How much do you take and how do you dose yours?

low cortisol--you mentioned 2 different timing schedules--8,11,2, and 4---and then suggested i try 8,12,3 and 5.  How did you comeup with your dosing schedule that worked best for you?

Getting up in the morning is very difficult for me, and I get really tired anywhere from 11---on.  I sometimes try to grab a nap--really more of a closed-eye rest before my kids get home at 3:30.  I have very little energy or desire to do much during the day and I hate to leave my house.

Does any of that information give you a better idea of what might work better for me as far as dosing scheduling?

I have to take a stimulant every morning or I will find it next to impossible to do much more than sleep all morning once my kids get off to school.
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Avatar_m_tn
When I said to take the HC at 8am and asked if you're up at 7am then that was a typo. Take the HC say 4x during the day with the biggest dose in the morning when you wake up. And I assume you wake up at 7 or 8am. If you're waking up much earlier due to sleep issues then take your 3
pm/4pm dose an hr later and when you start waking up at 7 or 8 then start this regimen.

You say you're up early and have problems getting of of bed. I bet you have NO problems falling asleep as at the end of the day you're exhausted? True? You are exhausted because either the times you take the doses don't deal with your adrenal insufficiency or the doses in all are not enough.

Rumpled is right when she talks of the steady state of cortisol during the day not being normal. With that in mid please try

7am or when you walk up 13mg
11pm 7mg
2pm   5 mg
5pm   5 mg

The fact that you dont sleep well and have great problems getting out of bed, reminds me of my history. May be you are taking the HC too early in the afternoon? Also I dont understand why you're taking 10 mg at 10am given by then its been 19 hrs since you last took HC.

I recommend the above 4 dose regimen. Try it for a few days and see if you feel better. Vary the times to suit you but dont take more than say 5mg after 5 pm or your sleep will suffer (more). I

Hopefully  the changed dosing will work for you. The alternative is to raise your dose which isnt the best thing.
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Avatar_n_tn
I didn't realize I said I took 10 mgs at 10---i meant 10mgs in the morning when I said 10 mgs am------sorry for the confusion.

I actually quite often have trouble going to sleep until almost 11:30 or later---I have to try and drug myself with several things to get to sleep.  part of the problem is chronic pain, which often makes my neck very uncomfortable and either hurts my neck or my head when i try to lie down----then I have to sit in the recliner---plus my husband often watches TV until late into the night, and I have severe reflux---I also wake up during the night either from pain or from a full bladder.

However, if my pain is sufficiently controlled and I feel really sleepy, i can fall asleep with the TV running if it is not too loud---but I rarely sleep through the night and almost always wake up in pain in the morning.

How do I figure 13 mgs?  just do my best to break the 1/2 pill slightly uneven?

Even though I often wake at 4 am or so, i usually sit in the recliner and just rest and doze---never really falling back asleep---so I don't want to take the first dose then, obviously.  I'm getting out of bed, but not really functioning yet, usually between a little after 6 and 6;45.

Why did you say it would take several days before I would function better, if I feel like this way of dosing works better for me?

How would I know if I needed a raised dose?  I already feel like I'm on the higher end at 30 mgs---but I have heard of people being on 35.  Not thrilled with the idea of having to do that----I'm hoping that a better dosing schedule will do the trick for me.

Is a short nap around 2 pm or so alright if I feel sleepy?  I don't really fall asleep, i kind of lean back in my rocker, close my eyes and semi-doze while I rock gently.
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Avatar_m_tn
A few things:

You have many ailments and it is easy to misdiagnose a condition as being something when it is something else.

When I had AI that was all I had. So I know what symptoms  AI causes.

So at night, at the and of another long day, having only small HC supplements at 5pm, I was beat. I rarely had issues sleeping. GETTING up in the morning was a HUGE problem however,

If I were you I would investigate if the chronic pain you have in your head and neck (and the meds taken to deal with them) is causing sleeping problems. Quite possibly they stimulate you or they work poorly with HC, making getting to sleep hard.

If so then you may have to vary the doses or times of when you take those meds.

You ask how to get 13 mgs? I found that HC is sold in pills of 10 mg; 5 mg and 1mg. Don't cut the pills yourself unless they are scored (ie have lines where a pill cutter can cut). You are best off buying HC in the different does sizes.

The fact that you nap is understandable. You are not well.
I too take short naps 3x a WEEK. I got worried - as this developed a month AFTER I stopped HC - and underwent a sleep study that confirmed YES I do fall asleep in the afternoons EVEN though I get enough night time sleep. Why I fall asleep nobody knows!

You nap because you dont get enough night time sleep (in terms of time and quality), so that your napping makes sense.

Are you seeing a very good endo? That is the key.
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Avatar_n_tn
we don't have good endos in Idaho
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Avatar_m_tn
Well if I were you I would consider visiting LA or SF as soon as you can and seeing an endo affiliated with a leading university hospital. Look for hospitals that have outstanding pituitary centers as you wan a neuro-endocriniologist or at least an endo with pituitary experience who would be familiar with your symptoms..

The fact is that a great endo will diagnose you properly, give you the right
meds and willmtreat you so you're on the meds for the LEAST time required. This was my experience after I tossed to the curb the "well respected" endo who misdiagnosed me and almost had me readmitted to hospital because of his LACK of experience.
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657231_tn?1390151580
When I took cortef (I am on a long acting now - hate it) - I took it on waking and then another dose at 2 or 3pm. I took 20mg - so I took 15mg on waking, and 5mg in the afternoon.

I know some people break it up in tiny doses - but I just could not do that - it was just too invasive. I found the afternoon dose a pain in my...

I am on a once a day dose now - and my cushie symptoms are back.

Re pain - (you typed so much I got lost - so I may have missed some!), yes, cortisol coming and going does cause pain. Like when you wean from a high dose it hurts and if you have a cyclical case of Cushing's, the changes your body does is crazy painful as the anti-inflammatory properties come and go at a whim. I don't think it happens so much on a replacement dose as the dose is normal - as in what a normal body does. If you have that, then something else is going on - dosing, your body etc.

Agree on the neuro-endo.
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Avatar_n_tn
the closest univeristy hospital we have is the university of utah---I don't what their endocrinologists are like--but i know that they have a separate endocrinology lab.
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Avatar_m_tn
I just looked up (on the US News website)  three facilities:

Two in Los Angeles:

Ronald Reagan UCLA Medical Centre
Ceders Sinai Medical Centre

One in San Francisco

UCSF Medical Centre

All are according to the website very well regarded.

No endo facility in Utah rates comes close in reputation to these 3.

If I were you I would look up the above website to find names of top endos. and call all three facilities explaining your need to visit.
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Avatar_n_tn
money is a major issue---we couldn't afford the trip there follow up visits, unless they would follow up by email and phone.  also, If they are not on our insurance network, my coverage would be considerably less.  we are already in debt up to our eyeballs.

It's sad that such important decisions in your life have to be based on money.

I think my husband needs and endocrinologist, also.  I posted on the thyroid site because I didn't know where to post--but I'm sure he has low testosterone.

He had two failed hydrocele surgeries which eventually led to having the testicle removed.  His testosterone was tested before the removel (removal) of the testicle and his levels were 6 points above the bottom of the lab range--but the doctor said he could not legally do anything until he hit below the lab range because it is an anabolic steroid.

He has so many symptoms of low testosterone----I wish they would look at him as a human being, and at his symptoms, instead of at a number on a piece of paper!!!!!

he was told to take DHEA 25 mgs twice a day and they would test his testosterone in 6 months!!!!!  nThe guy was really low-normal with two testicles--now he only has one.  He also only has half of a thyroid.

The urologist said if he has low T that he probably has an estrogen dominance---but no other tests were run.

Our local doc told him to wait until the health fair (March) to get his thyroid checked--it is fairly cheap---but they will only test FT4 and TSH.  Our insurance coverage is so good for blood work, I see no reason to wait--but I'm not sure I can get a doctor to test all of his hormones --I think getting the thyroid tests won't be a problem.

Sorry about the extra complaints---we just had a really bad night involving my husband and a 24 yr old son who is still at home, and struggling with life--and the 24 yr old and his 30 yr old brother. Hard to tell who is telling the real versions since both boys had been drinking--and my husband and 24 yr old both have anger issues.
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Avatar_m_tn
Hi

I appreciate that money is a crucial factor especially if you need follow up appointment/s when a facility is not on your insurance policy.

But more important than money is information.

Without information you are not getting better; not getting stronger and not going to get well any time soon. That is a fact as AI is a very specialised niche.

Thinking over your case I would - in your position - go to LA or SF to meet an excellent endo.

Go initially for one thorough visit.
Do not book trough the hospital.
Contact the endo himself/herself after finding his/her name from the US News & World Report website.

Email him your problems.
Tell him/her where you live and that you have had no luck with local endos.
Tell him that your insurance will not pay to visit him but you will pay, so ask him how much is it?

I speak from experience.
I was on HC for 18 mths.
The wrong endo (on my insurance) misdiagnosed me and prescribed the wrong doses. I was in pain/tired for at least 8 of those 18 mths UNNECESSARILY.

I found the right endo finally, but he was not cheap.

1.The right endo is the key.
2. Ideally you'll find a great endo on your insurance and located nearby.

But if you cannot find (2) then I urge you to contact an endo  in LA or SF.
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Avatar_n_tn
low cortisol--you and rumpled have been so much help.  i don't know if you saw that i mentioned (I think opn a different thread0  that the different schedule you told me to try for taking my cortisol seems to be helping me a bit.

My GI mentioned a particular Endo in a totally different town that he wanted me to try.  i told him i knew the father had an excellent reputation--but this is the son, and i haven't heard as good of reports about him---but then, Ihaven't heard very many reports about him, either.

The GI I see is excellent, he recognized almost immediatly what my endocrine problem was when i mentioned several hormones that were off, besides my AI and my thyroid---he knew immediatly that i have central hypothyroidism.

I didn't realize that it was actually a rare form of hypopituitarism---although i was aware that my problems were coming from my pituitary---don't ask me why I didn't make the connection.  I had completely forgotten that central hypothyroidism was the first diagnosis I had been given---I don't think the endo told me it was actually hypopituitarism.

I have realized that when i talk to other people, that my deficiencies are a little different---and when talking to someone once about thyroid and cortisol problems, I mentioned that i had secondary AI---and someone told me that i was dealing with something different than most of the people on the group were.

I will probably try the endo my GI has mentioned, since I have a lot of faith in my GI---and i know that with a diagnosis of cental hypothyroidism that i don't have to worry about them screwing me up by trying to "normalize' my TSH, since it will never be normal or reliable.

If I don't get the right kind of help from this guy, I will look in to the places you have recommended---i might be lucky and they could possibly be on my insurance---we are on a number of different networks for doctors.

Thanks for the info on how to contact them.
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Avatar_m_tn
No I did not see the other thread where you say my changed dosage times is helping. Good to hear!

As to the GI's recommendation, I agree why not try him, see if he helps. I assume the GI knows your condition  well and isnt sending you to just any endo he knows of.

Can I suggest you prepare a page with a table that has 4 columns:

DATE   SYMPTOMS    TREATMENT APPLIED     RECOMMENDED BY


Fill in the table with dates you experienced symptoms;
state how severe were the symptoms;
how long they lasted;
what you did to treat them and
who recommended the treatment.

If you can summarise this clearly then you'll be helping your endo (whoever you see) a heck of a lot. Because you'll have your case in writing where you can pass him a copy and you keep a copy to assist you in the visit.
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