Prednisone helps my fatigue

cujet

Active Member
I'm a former athlete with severe/crippling fatigue and exercise intolerance for 5 years. I get some short fatigue relief from energy (especially Amino Energy) products and then feel normal, but they do nothing to relieve the exercise intolerance. Up until recently, I was falling asleep 3-6 times per day.

Did two 10mg pred/day cycles (1 month) and got real relief after about 2 weeks. No lasting benefit.

Did a 4 month cycle of pred and got real relief that lasted after the cycle for 4+ months. Yes, there was some decline after 3 months, but far better than before. Still very exercise intolerant. At least I'm no longer passing out constantly.

Tried different types of thyroid and doses. Tried eliminating T replacement and heavy T use. No change in fatigue/tiredness/exercise intolerance.

Cardiac workup good, 0% calcium score, nuke stress test shows proper heart perfusion.

Has anyone here gotten real relief from prednisone? Did the relief last?


I am:
56, male, Hashimoto's for 25 years. Low T for 20+ years.
Synthroid, 75mcg/day
NP (natural) thyroid 135mg/day
Topical T applied daily, level = 600
Thyroid levels mid-upper normal range, Both T3 and T4. TSH = 0.4

3 years of Cleveland Clinic has been no help, they never treated my fatigue. My dermatologist prescribed the Pred, knowing it would help.
 
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Pgrovetom

Member
Was your HPA axis ( cortisol control system) tested prior to starting Prednisone?

+ The most basic tests involve checking your AM cortisol and ACTH at about 8AM. This makes sure you are producing adequate cortisol first thing in the morning. You stop producing cortisol while sleeping and about 6AM, your HPA axis ( hypothalamus -> Pituitary-> Adrenal gland) produces the largest amount of the day which then tapers off. This cycle runs every day.

+The next involves testing your cortisol AM/PM which means checking it at 8AM and again on the same day at about 4PM. This checks if the production taper looks about right. One can do a cortisol saliva check 3 - 5 times during the day to check the whole curve but if the AM/PM looks ok, its doubtful its causing your severe fatigue.

+ The final regular test involves using synthetic ACTH to directly measure the amount of cortisol your adrenals produce when stimulated by ACTH which is the hormone the Pituitary uses to stimulate adrenal production of cortisol. Its called the ACTH stimulation test.

These tests will probably catch any severe mis-behavior of the HPA axis. When you take Prednisone, it replaces cortisol thereby boosting your cortisol levels irrespective of the HPA axis. Over time, Prednisone or hydrocortisone ( cortisol's name) will mess up the HPA axis control loop which can cause long term HPA axis problems.

A major effect of just taking Prednisone is suppressing the immune system. Its not a clean suppression of specific elements but rather its a immune system suppression shotgun. One important function of the HPA axis is to turn down the immune system and any inflammation its causing. If Prednisone is helping your fatigue, a reasonable mechanism would be the reduction of inflammation or other immune system effects on your central nervous system.

The possibilities of the actual underlying reason for the immune system's effect on your CNS and resulting fatigue are numerous and complex. I posted an update on my believed cause of fatigue which is caused by my immune system and Prednisone has been helpful for me but it wears off.

Just to give you an idea of how crazy it can get tracking down the real cause - check out my post from this morning called CFS/FMS with IBS Gut triggers
Pgrovetom posted Today at 8:24 AM

Prednisone has far reaching effects on the body with the immune system down regulation being among the largest. So if it helps you, that's great but the possibility "tree" is immense and it would take lots of testing to systematically rule in and out the many possibilities. What other symptoms do you have? Are you taking any medications that can effect the HPA axis such as opioids? Opioids also shut down testosterone and the HPG axis ( hypothalamus -> Pituitary-> Gonads). What has been ruled out? Are there any other odd test results that are suspected as being related to the fatigue? There are a million questions.
 

cujet

Active Member
Thanks for the detailed response. (note, not diabetic, never any high BG)

Synthroid 75mcg/d
NP thyroid 135mg/d
baby aspirin/d
Testosterone, currently compound 10% cream, .75 gram/d (or injections) (seems not to matter what so ever, other than libido)

Current symptoms: (scale 1-10, with 10 = worst)
1) Fatigue 6
2) Exercise intolerance 9
3) Hypoglycemia between meals or when fasting. Gets severe. BG reaches 55 or so. Severity 5 because can be managed by eating.
4) Odd pressure headache, not really painful, feels swollen. Aft, lower part of head. (Not neck) Seems to tie in with a bad day.
5) Rapid/intermittent squish, squish, squish, squish noise in head (center bottom of brain) upon waking. Not related to heart rate. I can hear/feel it. Used to go away when I opened eyes. Now it goes away in a few mins.

Previous issues over the last 5 years:
1) Fatigue 10. Sleep 12 hours night, 6x during the day.
2) Exercise intolerance 10. Unable to walk 500 feet.
3) Tingling feet, lasted about a month (BG OK)
4) Complete loss of taste, lasted 6 months.
5) Left eye pain, but behind eye, far worse when moving it. Did some damage to vision. Doc gave me pred drops which did nothing.
6) Regular inner ear infections that clear up with antibiotics.
7) Difficulty standing up from a chair or floor.

Regular exercise was part of my life. Bicycle miles went from a regular 30-50 miles per ride down to 6 miles in a matter of a year. Despite pushing as hard as I could. Good n bad days/months as I failed in fits and starts. Can't do 1 set at the gym, even with no weights, not to mention 3. If I do nothing for a week, I'll be capable of a short ride without failing and I'll feel well all day. But the next day I can't exercise and feel awful.

Weight gain has been a problem in the last few years. Partly due to the need to eat to fix hypoglycemia and fatigue. Partly due to lack of exercise and movement. I'm up to 230 pounds, 5-10" relatively muscular but losing tone rapidly now.
 

cujet

Active Member
That's me on the left, just before all this started. Even with Hashimoto's, I was able to maintain my weight and keep fit. Now, it's impossible.

[bimg=no-lightbox]http://cujet.com/assets/images/pilatus_resize.jpg[/bimg]
 

Pgrovetom

Member
That's me on the left, just before all this started. Even with Hashimoto's, I was able to maintain my weight and keep fit. Now, it's impossible.

[bimg=no-lightbox]http://cujet.com/assets/images/pilatus_resize.jpg[/bimg]
I'm not a doctor so my comments are intended to give you ideas that you can take to the doctors. My experience is that weird problems like yours and mine don't easily translate into what specialist is best. That has caused me to get run around and around. You probably have experienced the same just like me. I have an engineering background in system engineering and I try and go about the guiding of the diagnosis process in a systematic manner. The symptoms, history, other known conditions and abnormal test results are clues in isolating the cause. Your problem and existing older problems are all the arena for an endocrinologist. You need to start with a good endocrinologist.

The Hashimoto's seems well controlled and Low T ( also controlled) are 20+ years while the current condition is about 5 years old. Did they ever determine what was causing the hypogonadism ( Low T) ? Did these symptoms come on quickly? Were you relatively your old normal self and then something went wrong or did it creep up slowly over years?

You said you have been to the Cleveland Clinic. What specialists did you see, what did they say and were there any other tests that came back abnormal? They must have looked into the Hypoglycemia and what did they say? Describe what happens with your exercise intolerance?

The Hypoglycemia can cause lots of symptoms and seems the logical place to start. An HPA axis problem with cortisol regulation could also explain both the Hypoglycemia, fatigue exercise intolerance and the other odd symptoms. I would ask your doctor to do the testing I suggested in my earlier post. Its a good area to rule out.

There are many possible causes of Hypoglycemia without diabetes. I would insist on having your doctor investigate this. You need to see a good University caliber endocrinologist. Why are you sure about not being diabetic? Have you considered going to the Mayo Clinic in Rochester. I went there and if you have a good quality thorough referral, they are excellent. My problem was too weird and elusive for them.

Those are my initial thoughts.
 

debs

Member
Oh, cujet, just an aside, have you been tested for Celiac? There are stories of people reversing Hashimoto's with diet.
 
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cujet

Active Member
CC tested me for just about everything they could dream up with regard to simple blood and urine tests. They even sent samples to the lab in CA.

AM cortisol tested multiple times. PRIOR to any pred use. Unfortunately, it was tested on days I'm feeling well. Even so, on one test, cortisol was 4.7 and ACTH was low. The highest AM cortisol was 10.

Dex suppression test resulted in V low cort and ACTH. And it brought on an episode of severe fatigue for 2 days.

I've had a couple of episodes last year, where I went into what I think was mild shock after leaving work. Heartbeat was fast and very weak, breathing very shallow, dizzy feeling. Felt weak enough to call 911, but was so tired I instead crawled in bed, passed out instantly and recovered to a normal tired state in about 4 hours. I did not recognize it as shock at the time. But I've read that a thready pulse and rapid really shallow breathing can be shock.

I think I mentioned that hydrocortisone 10mg, 4x day seems to provide good relief too.

I do have a couple of brown/black lines in my thumbnail concurrent with this fatigue. Which I understand could be due to low cortisol.
 
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Pgrovetom

Member
CC tested me for just about everything they could dream up with regard to simple blood and urine tests. They even sent samples to the lab in CA.
Did they find anything of note?
Can you list what they tested for and anything that was abnormal?
What did they send to CA for?

AM cortisol tested multiple times. PRIOR to any pred use. Unfortunately, it was tested on days I'm feeling well. Even so, on one test, cortisol was 4.7 and ACTH was low. The highest AM cortisol was 10.
I too had some unusual Cortisol problems where it was erratic.

Now that you are taking Prednisone, there is no way to evaluate or look for a problem. You will need to stop/taper off if you want to evaluate this. How long have you been taking either Prednisone or Hydrocortisone?
You need to get off it and get tested on a bad day or just test every morning for a week.
4.7 is low.

Dex suppression test resulted in V low cort and ACTH. And it brought on an episode of severe fatigue for 2 days.
That's what it is supposed to do. It results in your Hypothalamus and Pituitary telling your adrenals to shut down. Its a test for Cushings - too much Cortisol - not too little. Did they do an ACTH test? - this checks if your adrenals can produce Cortisol in response to ACTH which normally comes from the Pituitary.

I've had a couple of episodes last year, where I went into what I think was mild shock after leaving work. Heartbeat was fast and very weak, breathing very shallow, dizzy feeling. Felt weak enough to call 911, but was so tired I instead crawled in bed, passed out instantly and recovered to a normal tired state in about 4 hours. I did not recognize it as shock at the time. But I've read that a thready pulse and rapid really shallow breathing can be shock.
That does sound like what adrenal crisis does. Did you have back pain and low blood pressure? It can be dangerous. Did you faint? Laying down can help regulate your blood pressure.

I think I mentioned that hydrocortisone 10mg, 4x day seems to provide good relief too.

I do have a couple of brown/black lines in my thumbnail concurrent with this fatigue. Which I understand could be due to low cortisol.
40mg of Hydrocortisone is about the equivalent to 10mg of Prednisone. It better to do a daily taper of something like 15mg upon awakening, 10mg at noon and 5mg at dinner. A taper mimics the normal daily cycle.

If its not your adrenals, taking Prednisone daily can mess up your Adrenals. To get to the bottom of it, you will need to taper off, wait a few weeks and test it daily and especially on a day you feel bad. If you do this, you will want to have Prednisone just in case you do have an adrenal crisis. You really need an Endocrinologist to carefully work through this safely and systematically. Doctors don't like doing things thorough that takes days to complete when its based on your views. They don't like to collect evidence but without evidence they don't like to do anything - it sucks. You need to press them

Since you have been tested and both normal and abnormal Cortisol has been seen, that suggests an erratic Cortisol problem. The most likely cause for something like that is a drug or exposure that also varies. There are drugs that cause Cortisol to drop. Its not likely a tumor since that would be fixed. I'll investigate what other causes are variable..

Have you been tested for DHEA?
 
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cujet

Active Member
Thank you for the responses!!


Note: I don't and have never taken any other drugs, and no illegal stuff either, ever. So it's not likely that low ACTH and Cortisol are due to me taking something improperly. Thyroid pills and low Cort are somehow related.

I have not taken Pred since May 2019 (today is Oct 22, 2019) . That was a 4 month cycle of Pred 10mg/1 d. After tapering off, I felt pretty normal for 3 months. Now 5 months later, I'm getting my old symptoms back. Interestingly, they are not as severe. I'm also not passing out (fatigue so severe I must stop what I'm doing and sleep) 5-6 times per day.

I'm going to CC for an ACTH stim test this Friday. I suspect it will be normal. As anytime cort tested low, ACTH was also low.

The list of testing is pretty epic. I'll note the oddball ones.

Cortisol 4.2 (lab range 6-22)
ACTH 7.2 (lab range 7-63) (note every time ACTH is tested, it's 10 or lower)
Positive ANA
RNP Antibodies 7.6 (Lab range 0.0-0.9 AI) Flag H (subsequent test in CA did not exceed the lab threshold of 10.

The thing is, I have high blood pressure, not low. And I'm no longer skinny. All due to utter lack of energy and needing to eat.
 

Pgrovetom

Member
Note: I don't and have never taken any other drugs, and no illegal stuff either, ever. So it's not likely that low ACTH and Cortisol are due to me taking something improperly. Thyroid pills and low Cort are somehow related.
I wasn't implying the inappropriate use of drugs but asking if you can think of some exposure in your environment that could be interesting with the HPA axis. This could be a medication you take, a supplement, a toxin exposure ( solvent, mold, food, water etc..) that varies day to day leading to varied cortisol regulation. Cortisol is regulated by the HPA axis based on the circadian rhythm, cortisol levels and stress.

But other things can interfere such as the drugs I mentioned. You are taking Thyroid medication and Testosterone which are hormones in closely related systems ( HPT and HPG axis). The Hypothalamus is at the base of the brain and is the gland that participates in the regulation of all of these hormones regulation. That makes me suspicious along with wondering if your Cortisol levels vary day to day suggesting some "external" interference with the HPA axis regulation.

The Pituitary produces ACTH in response to CRF being produced by the Hypothalamus. Based on your having seen low ACTH AND low Cortisol, that suggests its NOT your Adrenals but caused by the Pituitary or Hypothalamus.

If you tested your Cortisol and ACTH for an entire week at 8AM, you normally should not see a large variation unless there is some outside influence or significant stress ( an outside influence). If you do see a large variance, you would ask the question, what did you do differently that might be that outside influence.

For example, say you were painting your bedroom one day and saw the ACTH/Cort low the next morning. That would alert you that something in the paint such as a the a solvent exposure might be the problem. This is only an example to get you to think about what you did that might expose you to some outside interference to the HPA axis. It also explains why testing every day for a least a few days is crucial in determining whether your ACTH/Cort is fluctuating.

I have not taken Pred since May 2019 (today is Oct 22, 2019) . That was a 4 month cycle of Pred 10mg/1 d. After tapering off, I felt pretty normal for 3 months. Now 5 months later, I'm getting my old symptoms back. Interestingly, they are not as severe. I'm also not passing out (fatigue so severe I must stop what I'm doing and sleep) 5-6 times per day.
So now is the time to ask to get tested for multiple days. Just this comment suggests your HPA axis response is blunted and gradually your Cortisol production is declining.

I'm going to CC for an ACTH stim test this Friday. I suspect it will be normal. As anytime cort tested low, ACTH was also low.
Good. Is this being monitored by a Endocrinologist? Its too bad you can't check ACTH and Cortisol every day till Friday. Low ACTH suggests is secondary and not the Adrenals themselves. But does it vary or does it just slowly decline till you have symptoms? Have they done any scans such as an MRI to look for a tumor near your Hypothalamus or Pituitary?

Given you have problems with Thyroid ( HPT axis) and Testosterone ( HPG axis )also, I'd be very curious if there is some structural problem around your Hypothalamus. That's why I asked if they ever found the cause of the HPG axis problem ( low T)? Now you have a possible HPA axis problem. The "H" (Hypothalamus) seems a common denominator.

The list of testing is pretty epic. I'll note the oddball ones.

Cortisol 4.2 (lab range 6-22)
ACTH 7.2 (lab range 7-63) (note every time ACTH is tested, it's 10 or lower)
Positive ANA
RNP Antibodies 7.6 (Lab range 0.0-0.9 AI) Flag H (subsequent test in CA did not exceed the lab threshold of 10.
Even though an Endocrinologist is the obvious specialist you need to focus on, you mentioned earlier the Thyroid problems might be autoimmune in nature. The positive ANA and RNP are suggestive a possible autoimmune disorder which also points at a Rheumatologist ( Autoimmune specialist) as another specialist.

My experience is that when two disparate specialists are suggested, it gets complicated and its easy to get lost between them. Specialists do better when its solidly in their camp rather than a mystery straddling both areas.

The thing is, I have high blood pressure, not low. And I'm no longer skinny. All due to utter lack of energy and needing to eat.
What I meant is when you got dizzy, you might have been an adrenal crisis. An adrenal crisis causes your blood pressure to drop suddenly and its dangerous. You could have high blood pressure most of the time but when your Cortisol is very low for some time, you enter an adrenal crisis, your blood pressure drops very low and you get dizzy and can faint or black out.

Do you have a desire for salt? Do you crave carbohydrates that are salty? Low Cortisol makes you crave salt which obviously will cause weight gain if its chips or other salty carbs. Do you ever have low back pain that doesn't seem to be your spine? That's another adrenal insufficiency indicator along with the salt craving.

If you get dizzy, sit down and check your blood pressure. If its very low, unusually low, that's dangerous and you should go to the ER and mention your adrenal insufficiency and have them do a Cortisol test.

I'm not sure where you live but you might consider getting a referral to the Mayo Clinic in Rochester so you can see an Endocrinologist, Rheumatologist and Infectious Disease specialist all together. They will do the appropriate MRI to make sure there is no physical cause to these problems and look for a infection cause. Are you aware of any chronic infections you might have like EBV?
 

debs

Member
cujet, I am also a former athlete, weird Hashimoto's case, with non-diabetic hypoglycemia. Female, however. I stopped eating wheat three years after i found out I had Hashimoto's. (Back then there was less credible info out there and you were crazy for trying to put 2 and 2 together.) The ANA can be caused by the Hashimoto's. (Mine apparently is. ) If I were you, I would skip right to cutting all grains out of your diet, at least all except rice and corn, and eventually those, too. Also cut back on as much carbs as possible without making yourself uncomfortable. I've tried the low carb diets (never got close to zero carb or keto) but the hypoglycemia almost kills me every time. So be smart, you know yourself. Get rid of grains, eat loads of meat, fish, eggs, and veges and see if that helps. Also eat more salt and stay equally hydrated. As much as you can stand. I'm not kidding, try it. Btw, i eat as i advised you, and i weigh the same i weighed in high school, same frame.
 
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cujet

Active Member
Once again, thanks for the detailed answers!

The Hashimoto's was brought on by a very nasty bout of EBV at age 33.

At CC, I have an 2 Endo's, Rhum, Neuro, and various really qualified PA's.

Some clues:

When I used to be able to get a good workout in, I'd feel well the rest of the day, but unwell the next day. (a good workout raises cortisol)

When I get really stressed, I feel very odd. Difficult to describe, other than to say that I feel incredibly strange and unwell. This is a more recent thing, concurrent with my recent fatigue.

Yes, some salty cravings. Cashews, pretzels etc. That's new too.

Eating a big meal sometimes helps. While I am often hypoglycemic, I know what that feels like and it's relieved by sugar or carbs. Fatigue requires a big meal for partial relief.

I used to be able to get sudden relief from Amino Energy or oral spray vitamins energy spray. That tells me it's "treatable" and that something is missing. Amino Energy still helps, but it must be along with a big meal.
 
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cujet

Active Member
Debs,

Thanks for the input. I a a careful eater, and know how to eat for Hashimoto's. In fact I was doing this for the last 20 years with good results. Clearly, this is way beyond diet. I'm unable to get a workout in, or even ride my racing bicycle 3 miles before running out of energy so completely, I must lie on the floor!

I've done the vegan/gluten free and V-Low carb thing. No change with this issue what so ever. I'm not a burgers and fries kind of guy. I'm a salads n fish type person.

Something is horribly wrong and the Cleveland Clinic has been unwilling to try to treat me with anything.
 

Merida

Well-Known Member
@cujet
I read that your illness started with EBV at age 33. My son started having problems at age 5, 1986, after well - documented ( IgM / IgG panels ) case of EBV. He is still having issues with stress and otherwise today. EBV is known to target thyroid gland.

But here is another issue : my brother ( in Penna.) is having all of the same symptoms as we are all reporting. He never recalls being bitten by a tick, but tested positive for Lyme 1 month ago. He is improving after 3 weeks of IV antibiotics.

My symptoms started with a neck/ pelvis injury in 1998. But in 2010 I was visiting Virginia and got 1 tick bite. My infectious disease doc here did screening test - negative. But in 2017 I saw a naturopath. He did the complete Western Blot panels, and there it was - five IgG positive bands, CDC positive. ( tested by Lab Corp) I may also have Bartonella - there are many coinfections traveling in ticks. And I have read that there May be an interaction between EBV and Lyme Borrelia - that Borrelia may reactivate EBV, which virtually all of us have had by the time we reach 50 years to so.

I too have blood sugar, hormonal issues, blood pressure is high in am, normal in day, very low in evening/ nite. A confusing mess.

So, if you have ever had some kind of neck injury - consider that this might be important. ( the best neck person I know of is Jerry Hesch, doctorate of PT, Colorado). The relationship between the top of the neck and lower skull is critical - and misalignment can cause spinal fluid pressure build up in the lower brainstem/ cranial nerve/ hypothalamus and pituitary area. Infective organisms always take advantage of areas with low blood / spinal fluid flow.

Also, if there is any chance you have bitten by a tick please look at the Lyme and coinfection situation. NorVect conference, Dr. Alan McDonald, etc. It is appreciated that Borrelia May pass through the placenta, and may also be sexually transmitted.

We are all searching for answers to this great enigma. Hope you find them !
 

debs

Member
@cujet
I read that your illness started with EBV at age 33. My son started having problems at age 5, 1986, after well - documented ( IgM / IgG panels ) case of EBV. He is still having issues with stress and otherwise today. EBV is known to target thyroid gland.

But here is another issue : my brother ( in Penna.) is having all of the same symptoms as we are all reporting. He never recalls being bitten by a tick, but tested positive for Lyme 1 month ago. He is improving after 3 weeks of IV antibiotics.
I live in central PA. Everyone has, had, or knows someone (or a pet) with Lyme disease and/or co-infections. Everyone - bar none. I can guarantee you that ticks are not the only insects spreading these nasty infections.
 

Merida

Well-Known Member
I live in central PA. Everyone has, had, or knows someone (or a pet) with Lyme disease and/or co-infections. Everyone - bar none. I can guarantee you that ticks are not the only insects spreading these nasty infections.
@debs
Oh, I think you are so right. I have been here in San Fernando Valley ( northern L.A.) for 45 years - hot, dry - only a few local Culex mosquitos in early spring after a rainy year. My husband and I sit outside each afternoon. During the week of Sept. 30, 2018 ( after 5-6 months of NO rain, hot, dry weather !! ) I observed a swarm ( !!!) of tiny mosquitos around my husband's and my ankles and backs of arms. I caught a few - very hard to do as they are stealthy, elusive, but persistent in biting. I identified Aedes species !!! 2 species !! albopictus ( native to south east Asia ) and aegypti ( native to Africa ). WHAT ?!

I had 20 bites, as did neighbors. Called friends 5-10 miles away - same story, same week, swarms of these tiny mosquitos. Called Vector Control ( I am a biologist). They tried to convince me that they arrived in bamboo from southeast Asia - into El Monte ( about 25 -30 miles from me ) and there has been a gradual spread from there. But the observations did not fit this. There had to be millions of mosquitos arriving here in the San Fernando Valley the same week. Impossible. Especially considering these are tropical/subtropical species that need moisture and only fly 650 feet from hatching area.

So, we are having problems ( as are friends around the Valley) again in the past few weeks - again, no rain for many months, extremely hot and dry - certainly NOT tropical mosquito weather.

So what is going on ? Someone dumped these bugs. Who ? Why ? Aedes carry many of the big tropical diseases ( except malaria), so what is next ??
 

cujet

Active Member
I'm so glad for all the input, it's much more than I expected.


@cujet

So, if you have ever had some kind of neck injury....

Also, if there is any chance you have bitten by a tick please look at the Lyme and coinfection situation.

No neck injuries and no neck problems of any kind. The issues I have are located inside my skull at the bottom of the brain. Pressure feeling. Fast squish noise too, upon waking up, I hesitate to say this but it sounds EXACTLY like an orgasm feels. The fast contractions.

I've been bitten by ticks, and got Ehrlichiosis 15 years ago, which was treated with 100mg Doxycycline 2x/d for 1 month. I test negative for Lyme. Although I understand testing may not be accurate. I will ask for additional testing. The symptoms don't fit perfectly.

The symptoms do fit secondary adrenal insufficiency quite well.

NOTE: Suppression of the adrenals with steroids ALWAYS brings on the exact symptoms I get. In other words, stopping pred suddenly or the dexamethasone suppression test bring on the symptoms. As mentioned above, the pred cycle helped immensely. But there was week after I stopped taking pred where I had symptoms. Followed by a nice recovery.

I'm back to symptoms again. 3 nearly involuntary naps today, having a hard time standing up, weak, very very tired, slow movements, etc.
 

debs

Member
@Merida, Thanks for the info, that was very interesting. There are a lot of things we cannot explain and leave us asking a lot of questions.

@cujet, I understood from your symptoms about the adrenal insufficiency, and I can tell you've done your homework. I apologize if you were offended by the unsolicited dietary advice, but I really meant it: no wheat at all, and eat red meat and more salt. I will tell you my theory, having lived through long-term blood loss from a uterine fibroid and years of chronic dehydration following. They are supposed to fix people in developed countries before they bleed half to death or dehydrate. If at any time we lose blood or restrict our salt intake and our adrenals are struggling (mineralcorticoids), our system elegantly adjusts the entire blood volume down, because cellular and intracellular business depends on delicate balances. The unfortunate thing is that we feel like death but medical tests find nothing, because the body has so perfectly down-scaled the system. Have you had SED rate done? Otherwise known as ESR?
Btw. I had Ehrlichiosis.
Steroids and infections is generally not a good idea, so while the prednisone might make you feel better, if you have a latent infection, you're giving it a chance to do a sneak attack in the future. .
 
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cujet

Active Member
Did the ACTH stimulation test today. Where they pulled bloodwork first, injected me and tested 30 and 60 minutes after the injection. As expected 9AM base cortisol was on the low side of normal at 7.0. Just walking into the hospital, I was half the speed of everyone else.

About 15 minutes after the intramuscular injection of cortrosyn (synthetic ACTH) I felt normal. And I mean normal. No shaking, no stimulated feeling, just a normal human being. They had me sitting, so I could not do a "real world test" and walk around. Even the air in my lungs went in cool and easy like it should. I never wheeze or anything like that, but I was breathing a bit better too.

However, when the last blood draw was complete, I felt well and walked to my car at normal speed. No longer dragging an anchor behind me. But by 3PM I was really fatigued and gave in, took 10mg prednisone. Which helped in about an hour.

Also of interest, free T4 was on the low side. I've never seen this before. Normally it is 2/3 up the normal range. No change in dose in a few years.

Component Your Value Standard Range Flag
Cortisol Basal 7.0 ug/dL ug/dL
Cortisol Reference Ranges: 7-10 AM = 6.2-19.4 ug/dL, 4-8 PM = 2.3-11.9 ug/dL
Cortisol 30 min 17.8 ug/dL ug/dL
Cortisol 60 min 21.2 ug/dL ug/dL
Interpretation (ACTHST) A peak value of at least 18 ug/dL is a normal response to cortrosyn stimulation.
 

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