So my Saliva Cortisol test came back and I am low on Cortisol in the morning and around noon.
I know my LLMD when I see him next will discuss going on low dose cortef.
I have read both good and bad things about it.
Bad Weight Gain Hard to get off
Good Feel better more energy
I am just scared of the long term affects.
Can people please share their experiences of low dose cortef?
I also should add I am on thyroid meds too for Hashimoto.
Thanks!
Posted by Lymetoo (Member # 743) on :
VERY hard to get off. Why not try some natural alternatives?
Adrenal Health by Gaia herbs is one that was mentioned here as being helpful.
(cortef did not make me gain weight, by the way)
Posted by emla999/Lyme (Member # 12606) on :
You may want to consider trying Paul Robinson's Circadian T3 method before taking Cortef.
I say that because several Hashimoto/hypopthyroid patients with adrenal fatigue seem to have had success at correcting their adrenal fatigue (low cortisol) and hashimoto/hypothyroid symptoms by using Paul Robinson's Circadian T3 method.
Paul Robinson had Hashimoto Disease and adrenal fatigue and he developed a protocol that involves administiring a T3 containing thyroid medication such as Cytomel that corrected his hypothyroidism and his adrenal fatigue (low cortisol). And other people with hypothyroidism and adrenal fatigue have also reported similar benefits from doing his circadian T3 protocol.
You can read more about this protocol on the links down bellow.
There is a yahoo group that is made up of people using the Circadian T3 method to correct adrenal fatigue by taking a T3 containing thyroid medication on a unique dosing schedule.
Paul Robinson found that your thyroid hormone production and cortisol production followed a circadian rhythm. And he also found that you can often correct adrenal insufficiency, cortisol production and hypothyroidism when you give a T3 containing thyroid medication in a way that is in tune with your body's natural circadian rhythm.
So, adrenal hormone production can apparently be effected by the health of your thyroid gland. And at least in some cases, correcting hypothyroidism can cause your adrenal gland function and cortisol production to return to normal.
And unfortunately most medical doctors (LLMD's included) do not seem to be aware of the Circadia T3 method. Nor do they seem to be aware of how your body's natural circadian rhythm can effect the production of cortisol and thyroid hormones and how your thyroid medication dosing schedule can dramtically alter your cortisol production.
.
Posted by MichaelTampa (Member # 24868) on :
Along with thyroid, has given me energy for the day. Haven't had any problems with it. Of course, I get it compounded with better ingredients than cortef, which has some junk in it.
Posted by kim812 (Member # 17644) on :
I was on 20mg cortef for 3 years...it was very difficult to wean off and took me almost a year.
I still have very low cortisol in morning and noon and am now only taking 5mg in the morning.
I was weaned off because the doctor wanted to re do all my testing and start from scratch. I also had the ACTH stim test along with saliva and blood cortisol.
My T3 levels are perfect so I am not taking cytomel..just levothyroxine 88mcg. I don't feel any different taking either of those meds.
The doctor I saw said that taking a small dose will not compromise the adrenals. It is when you get to the higher doses like the 20mg when it becomes difficult to stop. I had no side effects at all...no weight gain...or any other bad reactions.
Posted by faithful777 (Member # 22872) on :
I brought my adrenals back into balance using pregnenolone and ashwaganda daily. It took a while and I had to also support my thyroid and other hormones.
I also used L-theanine to help me stay calm.
Cortef made me feel sick.
Posted by Keebler (Member # 12673) on :
LymeNet Archives -
Posted by Indica440 (Member # 39461) on :
kim812 do you really know if its 20??? because i take 30-35 and i hope i do not surpress the immune systeme
Posted by kim812 (Member # 17644) on :
Yes it was 20mg per day..I was taking 5mg 4x a day. I don't remember the exact times but something like 8am..12pm..4pm..10pm.
He wanted me taking it at night in order to try and help my adrenals recover overnight. It never bothered me to take the night dose.
I think you are taking alot at 30-35mg. I believe they only give people that have Addison's that amount. It was extremely difficult to wean off the 20mg.
Posted by lpkayak (Member # 5230) on :
i seem to need it. was started with 15 mg once a day and now only take 10.
i also take armour. started at 45 and now on 15.
i crash if i stop either one.
Posted by VV (Member # 38828) on :
quote:Originally posted by kim812: Yes it was 20mg per day..I was taking 5mg 4x a day. I don't remember the exact times but something like 8am..12pm..4pm..10pm.
He wanted me taking it at night in order to try and help my adrenals recover overnight. It never bothered me to take the night dose.
This is a horrible dosing schedule!
Cortisol is not produced evenly throughout the day and dosing to mimic diurnal variation works much better.
The highest peak occurs before waking and anticipates the sun rise (7am).
There are two more peaks during the day then cortisol reaches it's lowest point in the evening.
Most people on replacement doses of HC take their largest dose at 6AM, and two smaller doses around 11AM-PM and 3-5PM.
An example of a full replacement dosing schedule:
12.5mg @ 6AM 7.5mg @ 11AM 5mg @ 4pm
Posted by kim812 (Member # 17644) on :
I don't really remember the exact times since it has been almost 4 years since I quit..I do remember the doses were equal though at 5mg each dose. I have no idea how he had come up with that schedule and I didn't know enough at the time to question it..I only knew I was very sick and just wanted some relief..
To this day according to saliva testing I am still basically flatline the entire day..the only normal reading I ever had was the night time one at 10pm..
Posted by VV (Member # 38828) on :
quote:Originally posted by kim812: I don't really remember the exact times since it has been almost 4 years since I quit..I do remember the doses were equal though at 5mg each dose. I have no idea how he had come up with that schedule and I didn't know enough at the time to question it..I only knew I was very sick and just wanted some relief..
To this day according to saliva testing I am still basically flatline the entire day..the only normal reading I ever had was the night time one at 10pm..
!!!
Are you experiencing any nausea, weight-loss or light-headedness? What about stomach cramps or skin-darkening?
Posted by Lymetoo (Member # 743) on :
My LLMD told me that our bodies produce about 30mg of hydrocortisone daily. (if we're healthy)
So I would try to stay under that amount.
I never took more than 20mg per day. 10 in the a.m. and 10 about 2-3 pm.
I now take 10 mg in the morning and that is it. I tried 4 years ago to get off and could not do it.
Posted by kim812 (Member # 17644) on :
I don't have any of those symptoms.... In fact it is extremely difficult for me to lose weight!I only take 5mg in the morning now but it really isn't making a difference. I am going to ask about coming off that dose.
Even when I was taking the 20mg I really don't think it had any impact on my energy or fatigue even though my saliva cortisol testing is always extremely low.
I have already had the STIM test and it even though my blood cortisol started out low (8) my adrenals were able to respond to the stress medication by the level going up to 23 in an hour.
It is really hard to get of this stuff especially the high doses.
Posted by emla999/Lyme (Member # 12606) on :
Kim812,
Having a normal T3 is not always a reliable indicator of what your T3 blood levels are throughout the day or whether or not you would benefit from taking a T3 containg thyroid medication. Nor is your T3 blood level always a reliable indicator of whether you have hypothyroidism or not.
So, there is possibilty that your symptoms such as the fatigue, difficulty in losing weight and low cotrisol levels may be due to undiagnosed hypothyroidism. And those symptoms may possibly improve if you were to take a T3 containg thyroid medication such as Cytomel. This may be especially so if you were to take your T3 thyroid medication via the Circadian T3 method.
Here is a yahoo group where people are taking T3 medication to correct their low cortisol levels and underlying hypothyroidism. And many of those people have "normal" thyroid blood levels.
Also, please read some of Paul Robinson's articles where he discusses the limitations and unreliabilty of thyroid hormone testing.
Paul Robinson and other people have had "normal" thyroid blood levels but they still claim to have seen tremendous improvement in their symptoms when they started to take a T3 containing medication.
****The Circadian T3 method seems to be especially beneficial for people that simutaneously have "adrenal fatigue" and low cortisol levels and hypothyroidism.
"There is no test for the actual level of cell regulation by thyroid hormone, relative to a healthy rate for us as individuals. Putting this more simply, there is no blood test that can indicate how well our bodies are actually responding to thyroid hormone. Let no one ever tell you otherwise."
"Simply looking at a blood artifact like FT3 or RT3 will not reveal a problem for some people. Since we have no useful laboratory tests to measure the actual level of regulation of cell function by thyroid hormone, then we can't know for sure what is really occurring within the tissues of the body"
"This research suggest that the current thyroid hormone blood tests of TSH, FT4 and FT3 fail to reflect actual levels of T3 in the body and that patients can continue to experience hypothyroidism even when thyroid hormone blood tests are normal. "
Also, your thyroid hormone levels can fluctuate every 30 minutes throughout the day and thus that can make diagnosing hypothyroidism with blood tests more difficult in some cases. One minute your blood thyroid hormone levels could look normal and thirty minutes latter your thyroid hormones can be low.
" A significant regular variation with a cycle length of half an hour was found in TSH, free T3 and free T4. This rhythm accounted for a significant part of the total variation in the levels of TSH, free T3 and free T4."
Paul Robinson, developed a method of administiring a T3 containing thyroid medication that corrected his hypothyroidism and his adrenal fatigue and other people with hypothyroidism and adrenal fatigue have also reported similar benefits from his circadian T3 protocol.
You can read more about this protocol on the links down bellow.
There is a yahoo group that is made up of people using the Circadian T3 method to correct "adrenal fatigue" by taking a T3 containing thyroid medication on a unique dosing schedule.
Paul Robinson found that your thyroid hormone production and cortisol production followed a circadian rhythm. And he also found that you can often correct adrenal insufficiency and cortisol production when you give a T3 containing thyroid medication in a way that is in tune with your body's natural circadian rhythm.
So, adrenal hormone production can apparently be effected by the health of your thyroid gland. And at least in some cases, correcting hypothyroidism can cause your adrenal gland function to return to normal.
.
Posted by kim812 (Member # 17644) on :
Thanks for all that great info...I want to say that I was on cytomel for years along with my levothyroxine. My LLMD had me on both and then I went to a regular endocrinologist because I had nodules on my thyroid and had to have a biopsy.
I know for sure that I have hypothyroidism because I was challenged with different doses over a period of a year and when the dose got too low my TSH spiked..
I do realize testing is not all that reliable but I really don't have a choice but to see an endo. He has tested my cortisol and T3 and says both are fine...I know they all only go by lab values.
I do have a very hard time losing weight...my cholesterol levels have gone up dramatically in the past 3 years...I am always cold etc...crave salt
I am seeing my LLMD next week and I know if I asked he would put me on cytome but I am not sure he would go against my endo..
I have been some of those links and they are very helpful but I also need to have a doctor who will agree with me...my LLMD would but not the endo.
I maybe should do the saliva test again since it has been over 2 years since the last one...
Posted by emla999/Lyme (Member # 12606) on :
I understand, it's not always easy to get our doctor to try a different method of diagnosing or treating a particular condition such as hypothyroidism, especially when this method differs significantly from the normal way of diagnosing and treating that condition.
But if you do happen to try Cytomel then you might want to try Paul Robinson's Circadian T3 dosing method. Research does seem to indicate that some people with hypothyroidism and low cortisol production need to take T3 medication during the early morning and a few hours prior to your usual morning awaken time.
Mr. Robinson claims that some people seem to have to take T3 medication approximately a few hours prior to their usual awakening time so their body will start the day off with enough T3 thyroid hormone to produce normal amounts of cortisol and to also keep them from having symptoms of hypothyroidism.
And yes, your symptoms would seem to indicate that you may have hypothyroidism.... fatigue, always feeling cold, high cholesterol, difficulting losing weight, low cortisol production and etc.
So hopefully, maybe one your doctors will ok you trying the Circadian T3 dosing method. That protocol may not help you but if your doctor is ok with it then trying that protocol may be worth a try.
.
Posted by Summer3 (Member # 35286) on :
I did it for a month. It was helping me to get through the day and then my LLMD wanted me to wean off it. My liver couldn't handle it at the time. I stupidly stopped it cold turkey instead of gradually. Then I felt really bad for about 2 weeks. After that I went back to my pre-cortef state of exhaustion and things have remained at that level. I was only taking 10mg: 5 in the a.m. and 5 at 1:00 or so.
What makes cortef difficult to get off? What would happen if I restarted it and took it long-term and then tried to stop it down the road?
Posted by kim812 (Member # 17644) on :
My LLMD is so open to me trying just about anything so I am going to do all my research on the Circadian T3 dosing so I will be able to talk knowledgeable about it. He might already know this method...He is the one who put me on cytomel back in 2007. I only quit it because the endocrinologist made me stop. I am willing to try anything at this point in my illness. Thank you so much for all that information because I had actually forgotten about cytomel and now maybe I can give it another go with the proper dosing schedule.
I suffer from chronic fatigue...unrefreshing sleep and low energy along with some other symptoms but those are my debilitating ones.
I see the doc on Feb 14 and will give an update then....thanx again!
Posted by kim812 (Member # 17644) on :
I am not really sure why it is hard to get off cortef...my adrenals were not compromised because of the dose I was on. I was just having wierd symptoms at times but I went very slow in the taper which reduced the problems I had. The doctor told me it would not be a picnic getting off it but I don't remember it being really bad....
Like I stated it took me a year to get fully off the 20mg.
Posted by emla999/Lyme (Member # 12606) on :
Here are a few more links discussing the Cirdcadian T3 method as a treatment for adrenal fatigue/low cortisol and hypothyroidism.
HOW T3, DOSED A CERTAIN WAY , CAN REVERSE YOUR ADRENAL FATIGUE AND HYPOTHYROIDISM.
Great info...thank you! I am very excited about talking with my doctor about trying cytomel again..
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by emla999/Lyme: Here are a few more links discussing the Cirdcadian T3 method as a treatment for adrenal fatigue/low cortisol and hypothyroidism.
HOW T3, DOSED A CERTAIN WAY , CAN REVERSE YOUR ADRENAL FATIGUE AND HYPOTHYROIDISM.
I've read these links, but don't think I really understand it. So then the person is taking T3 in the middle of the night long-term, or just during the weaning period? If they are already taking T3/T4 throughout the day, that would still be taken and needed, I assume?
Posted by emla999/Lyme (Member # 12606) on :
The Circadian T3 method usually requires that you take a T3 containing thyroid medication such as Cytomel a few hours before your normal awakening time long term and possibly for your entire life. This is called your "circadian dose" or your "CM dose".
For example, if you normally wake up at 8:00 AM in the morning then you will have to take your T3 dose a couple of hours prior to 8:00 AM. Normally people have to set an alarm clock but people are finding that they quickly fall back to sleep.
But if you normally wake up at 7:00 AM in the morning then you will have to take your T3 dose a couple of hours prior to 7:00 AM.
Plus, if needed, the Circadian T3 method also involves you taking a T3 containg thyroid medication at various times throughout the day. And a few supplements throughout the day... if needed.
The Circadian T3 method is a bit trial and error. And usually it seems to take several months to get your circadin T3 dosage, day time T3 dosage and dosage frequency correct. But people seem start feeling better fairly quickly once the T3 dosage and T3 dosage frequency is correct for them.
But based upon what I have read, many people with the combination adrenal fatigue/low morning cortisol and hypothyroidism seem to benefit from this method.
Actually, it seems as though most people that try the circadian T3 protocol have usually already tried some other form of thyroid medication and their doctor has told them that their blood thyroid hormones are fine and they are not hypothyroid.
But those same people still have many of symptoms that can be caused by hypothyroidism such as chronic fatigue, brain fog, low body temperature, cold hands and feet, headaches, dizziness, weight problems, depression, anxiety, sleeping problems, painful joints and muscles, high cholesterol and etc.
But many of those people seem to be finding that doing the circadian T3 protocol will cause often cause many if not all of those symptoms to go away or improve.
And many people will find that their circadin T3 dosage, day time T3 dosage and dosage frequency will be different from other people that are doing the circadian T3 method. And after you finally fine tune all of that your Circadin T3 protocol will be sort of unique to you.
[ 02-03-2013, 12:15 PM: Message edited by: emla999/Lyme ]
Posted by Pocono Lyme (Member # 5939) on :
I take Armour Thyroid and Hydrocortisone 15-10-10-5. Would taking Armour T in the middle of the night work and do you take the HC as prescribed at first?
Is there a way of knowing if you need just T3 or say T4? As you can see, I am totally lost in this.
I joined the groups but can't follow the format. Doing a search yields too many results so none show and I don't know what to ask to refine the search.
It's one of those things where if you know little about something you don't know what to ask.
I'm looking into ordering selenium. Thanks for the link to explain that. I also have immune deficiency.
Posted by marinel (Member # 33240) on :
I was started on Cortef for a Stage V adrenal insufficiency, and following my very first dose of 5 mg, I went into a psychosis that lasted for 48 hours! Needless to say, I haven't touched the stuff since.
Later, I was told by another ND that patients with long-standing adrenal insufficiency often have problems with Cortef. I envy those who have benefitted from it...
Posted by Annelet (Member # 13503) on :
My LLMD has started me on Cortef..... said to keep total dose 20mg or less. My ND said to take higher dose at 7am and then second dose at 11am, so I am doing 12.5mg and 7.5. After 3 months, ND said to taper off over 2 weeks, and then retest salivary cortisol levels 2 weeks later. My salivary levels were previously flat across the board.
Posted by hopeful4 (Member # 8486) on :
I take 5 mg cortef, in 4 doses before 3 pm. I've been on it several months, and it is helping me a lot. My energy is better and more evenly sustained, I am better able to handle stress, I can take care of more of my daily responsibilities, and I am having improved mental function.
Previously I have tried many kinds of supplemental adrenal support which helped, but was not enough.
Also, I have been on Armour Thyroid for several years. Even while on this, I continued to have fatigue and difficulty handling stress.
With the Cortef, I tried upping the dose to 10 mg., but it made me irritable, and I had heart palpitations. Back on the 5 mg., I'm pleased with the results.
Posted by LisaK (Member # 41384) on :
please tell me, what does everyone mean "hard to get off"
thanks
Posted by VV (Member # 38828) on :
quote:Originally posted by LisaK: please tell me, what does everyone mean "hard to get off"
thanks
It means you have to taper it very slowly in order to avoid an adrenal crisis. If you take 20mg a day and suddenly stop you will be in for trouble when your body is not prepared to make up for the lack of it.
It is not "hard to get off" as in addictive.
If you need it, you need it. It is a replacement hormone. Some people are deficient in cortisol due to adrenal problems (often caused by Lyme).
You may feel much better on it (ie closer to normal).
Posted by Keebler (Member # 12673) on :
- "hard to get off of" could also mean that the body could experience sudden and deep fatigue, anxiety or even go into a dangerous adrenal shock if tapered off too suddenly or if the body (after relying on it for some time) just can't adapt to less (or absence) of this at a particular time.
It may not yet be time, other support may need to be better in place, or . . . any number of other variables.
The bottom line is that, if your body requires this, it can be life saving. Yet, when it's time to let your own adrenals do all the work again, even at low dose (physiological replacement dose) tapering off would need to be in very tiny steps over quite a while. -
Posted by MannaMe (Member # 33330) on :
For those using adrenal support - like Dr. James Wilson's supps - could you take those a couple hours before you normally wake up?
Would that help the adrenals / cortisol levels stabilize?
This sounds very interesting!
Hubby isn't on any meds for adrenal or thyroid. His healthcare professional preferred using supplements to rebuild.
Posted by LisaK (Member # 41384) on :
well, now do I trust my llmd? if what all of you are saying about this is true, why is he telling me otherwise?
![[Frown]](frown.gif)