Fatigue as a sole indicator of recurrence?

[lpas]

Over the past 2-3 months, I've had increasing issues with fatigue despite normal blood work. My CEA and CA19-9 (drawn last week) both seem fine. Hematocrit and red blood count are a little low, but that's been true since I finished chemo almost 2 years ago. My iron is normal. I take thyroid medication but latest TSH is normal too. No fever that I can tell. My August CT was clean and I have another one set for tomorrow afternoon.

All sounds good, right? But this fatigue is killing me and no one can explain why I'm so tired. It's that weird kind of fatigue where sleep doesn't help. If anything, naps make it worse. This definitely isn't normal. I'd blame residual issues from the chemo, but the problem just started a few months ago.

Has anyone had fatigue like this as a recurrence symptom? I can't help worrying this could be something small that just isn't affecting my tumor markers (and may or may not be visible on CT). A distant node, maybe?

Thanks for humoring my paranoia...

[Redtexa5]

Have you done a sleep study? Try to get your primary care to refer you for one. They diagnosed me with apnea and I am on a CPAP and it has made a world of difference.
Don't get too focused on cancer as the cause of all your health problems, time still marches on and all the normal decrepitude that come with age will be coming on down the pike. Having survived cancer doesn't give you a pass.

[teri3]

I've read were sometimes chemo can cause fatigue for quite a while after your last treatment. I agree with Redtexas get a sleep study done, sleep apnea causes those symptoms. Good luck I hope you get some relief.
Hugs,
Teri

[MissMolly]

Lpas:
Anyone who has had chemotherapy with the addition of corticosteroids (dexamethanone, most commonly) who has unrelenting fatigue should be screened for the possibility of secondary adrenal insufficiency.

Exogenous corticosteroids at high doses or over long periods of time can suppress the pituitary-adrenal gland dyad. The results is insufficient production of cortisol, a life-essential hormone produced by the adrenal glands. Secondary adrenal insufficiency is the clinical term given to pituitary suppression of ACTH and subsequent inadequate production of cortisol by the adrenal glands.

Have your physician order a morning baseline cortisol and morning baseline ACTH. The test result range is specific to a morning blood draw, 7 to 8 am. Be certain to have your blood draw within the 7 - 8 am time frame.

If the morning baseline cortisol and ACTH test results are even low-normal, I would recommend a consultation with an endocrinologist. Secondary adrenal insufficiency is not well understood by the vast majority of physicians.

Symptoms of secondary adrenal insufficiency: Unrelenting fatigue, not relieve by rest; generalized muscle and joint pain, moderate to severe; nausea with or without periodic vomiting; low appetite; low blood pressure, especially with change of position as from sit to stand; sensitivity to lights and sounds, headaches; able to functional one day . . . the next day needing to be in bed - waxing and waning ability to up and participating in life.
- Karen -

[ANDRETEXAS]

I don't know if this is a positive after having FOLFOX, but even after getting 7-8 hours sleep, I can lie down and fall asleep at almost any time. Not that I do, but I can. And when I wake up in the middle of the night, I can fall back to sleep within 2 minutes.

[lpas]

Lpas:
Anyone who has had chemotherapy with the addition of corticosteroids (dexamethanone, most commonly) who has unrelenting fatigue should be screened for the possibility of secondary adrenal insufficiency.

Exogenous corticosteroids at high doses or over long periods of time can suppress the pituitary-adrenal gland dyad. The results is insufficient production of cortisol, a life-essential hormone produced by the adrenal glands. Secondary adrenal insufficiency is the clinical term given to pituitary suppression of ACTH and subsequent inadequate production of cortisol by the adrenal glands.

Have your physician order a morning baseline cortisol and morning baseline ACTH. The test result range is specific to a morning blood draw, 7 to 8 am. Be certain to have your blood draw within the 7 - 8 am time frame.

If the morning baseline cortisol and ACTH test results are even low-normal, I would recommend a consultation with an endocrinologist. Secondary adrenal insufficiency is not well understood by the vast majority of physicians.

Symptoms of secondary adrenal insufficiency: Unrelenting fatigue, not relieve by rest; generalized muscle and joint pain, moderate to severe; nausea with or without periodic vomiting; low appetite; low blood pressure, especially with change of position as from sit to stand; sensitivity to lights and sounds, headaches; able to functional one day . . . the next day needing to be in bed - waxing and waning ability to up and participating in life.
- Karen -

Thanks so much, Karen. A lot of this really rings true for me--especially the waxing and waning part. I took dexamethasone on and off for several years when I was pregnant/trying to conceive in addition to all the dex I had with chemo, so I've had quite a lot of steroids over the past 5-7 years. My ND thinks it could be cortisol too and he ordered a saliva/urine test that covers several points throughout the day, but I haven't had a chance to get it done yet. Do you know if there are any effective treatments for secondary adrenal insufficiency? Thanks again.

[lpas]

Thanks so much, everyone. I'm happy to report that today's CT was clear, so that makes me feel a little better (love, love, love how my oncologist always emails the report within hours.) Will definitely look into these suggestions. Am hopeful that maybe the fatigue will improve as I get further out from chemo.

Thanks again.

[chrissyrice]

Thanks for letting us know that your ct scan came back clean.
Very good news.

I had the sleep study done... seems I stopped breathing 47 times per hour!!!

I knew that I had sleep apnea ... but wow what a difference with my cpap machine... they are not like the old days ... very small unit, very quiet and comfortable... no huge face mask just a very comfortable nose pillow device.

I feel much better using the sleep machine.

Chrissy

[DarknessEmbraced]

I'm glad your ct scan was clear and hope you can find something to help with the fatigue!*hugs*

[MissMolly]

A lot of this really rings true for me--especially the waxing and waning part. I took dexamethasone on and off for several years when I was pregnant/trying to conceive in addition to all the dex I had with chemo, so I've had quite a lot of steroids over the past 5-7 years

Your prior exposure to exogenous corticosteroids + dexamethasone with chemotherapy does increase the probability that you have a degree of pituitary suppression.

Here's the deal . . . the body produces about 15-20 mg of cortisol a day. Cortisol is produced by the adrenal glands in communication with the pituitary gland in a negative feedback loop. The pituitary gland produces the hormone ACTH (adrenocorticotrophic hormone) that stimulates the adrenal glands to produce cortisol. As the adrenal glands secrete cortisol, the rising level of cortisol in the bloodstream serves as feedback to the pituitary to scale back production of ACTH. This feedback loop coordinates the level of cortisol to meet the body's needs and demands.

In the presence of exogenous corticosteroids - corticosteroids taken by mouth as an oral medication or as an inhaler (as for asthma) or by IV as an intravenous medication (dexamethasone as a pre-med for chemotherapy) - the pituitary gland correctly interprets that there is more than adequate cortisol in the bloodstream and responds by shutting down production of the hormone ACTH. When the use of corticosteroids is over a long-period of time (ex. several weeks) and/or the use of corticosteroids is of a relatively high dosage (ex. exceeding 30 mg cortisol equivalency), the pituitary gland effectively goes into hibernation with low/no pituitary hormone production. The taking of exogenous corticosteroids causes pituitary suppression.

The problem comes when the external/exogenous corticosteroid dosing stops. When an individual stops taking corticosteroids that heretofore have been dosed/administered at a fairly regular interval (ex. as with chemotherapy administered ever 2-3 weeks with dexamethasone as a pre-medication), the pituitary gland and/or adrenal glands fail to re-boot.

One or both of the pituitary gland and/or the adrenal glands remain inactive and in hibernation. The pituitary gland remains suppressed and fails to secrete ACTH. The adrenal glands, having been inactive due to freely circulating corticosteorids provided as an oral or IV medication, often atrophy and shrink - further negating their ability to re-boot and get back "on-line" and physiologically function.

Cortisol is a life-essential hormone. All hormones are basically chemical messengers. Cortisol is unique in that it is needed by every cell in the body. Every cell. Every brain cell, every muscle cell, every bone cell, every cell of the digestive tract/digestive system, every nerve cell, et. al - every cell needs cortisol to survive. This is one reason why the symptoms of adrenal insufficiency are so pervasive and vague and seem to have similarities with a wide swath of other possible illnesses/conditions. Every physiological function of the body depends on cortisol for its basic functioning. Digestion, metabolism, skin, cognition/thinking, the body's framework of bone and muscle, and more depend on adequate cortisol for optimal function and performance.

Without cortisol, life begins to slow to a crawl.

The onset of adrenal insufficiency is not acute like the turning off of a light switch. Rather, the symptoms of
secondary adrenal insufficiency will appear insidiously over time, slowly and gradually. Symptoms will also wax and wane - a person being able to function fairly normally one day, the next day collapsed and relegated to the couch/bed where even fixing a cup of soup can be a Herculean effort. This is because the HPA axis (hypothalamus-pituitary-adreanal gland) is able to compensate and draw on the body's available resources, providing intermittent but short-lived peaks of cortisol. The waxing and waning presentation can be disconcerting to family and friends who begin to question the stricken individual's legitimacy. How is it that their loved one can be relatively OK one day and a virtual zombie the next day?

A person with undiagnosed adrenal insufficiency will usually have 2-3 symptoms of adrenal insufficiency that are more prominent and more consistent over time. That is, 2-3 symptoms of the wide symptom profile will resonate as problematic and recurrent for that particular individual.

Symptom profile of secondary adrenal insufficiency:
1. Unrelenting fatigue, not relieved by rest. The fatigue is profound, deep, and pervasive. A person's arms or legs, for instance, may feel like a slab of concrete. Standing at a kitchen sink for more than 5 minutes is genuinely exhausting, propelling the person to amble back to bed to lie down. Many people with secondary adrenal insufficiency are incorrectly labeled with chronic fatigue syndrome and/or Lyme disease.
2. Varied gastrointestinal distress. The GI tract has embedded receptors for cortisol along its length, so symptoms of GI distress are verily prevalent. Nausea. Vomiting. Low/poor appetite. Low interest in food.
Generally queasy feeling.
3. Moderate to severe bone and muscle pain. Cortisol is the body's main anti-inflammatory agent. Low serum cortisol will have immediate effect on bones, joints, tendons and ligaments. Many people with secondary adrenal insufficiency are incorrectly labeled with fibromyalgia. Cortisol plays a vital role in keeping inflammatory processes in check. Low cortisol = increased systemic inflammation = increased body pain.
4. Sensitivity to overhead lights, sounds, clothing textures, and otherwise hyper sensitivity to sensory input.
5. Low blood pressure. Especially vulnerable to orthostatic low blood pressure, positional low blood pressure when changing positions from lying down to standing up.
6. General malaise, feeling as though one has the flu x 100.
7. Brain fog. General slowing of higher level thinking skills, difficulties with focused concentration.
8. Sleep disruption. Cortisol production in the body follows a diurnal patter. Cortisol production is highest in the early morning, preparing the body for the busyness of the day. Cortisol is lowest in the hours of the deep night. HPA disruption and cortisol dysfunction is often seen as an inability to get a rested nights' sleep with periods of insomnia and restlessness.

As you can see, secondary adrenal insufficiency is a complex and complicated disorder with broad impact on the body and the body's well-being. It is not a medical condition to be taken lightly or discounted. It is a condition that needs to be carefully monitored by a knowledgeable endocrinologist, specifically an endocrinologist with speciality interest in the pituitary and/or HPA axis. An endocrinologist who treats patients with diabetes as the bread and butter of his/her practice is not well suited to treating
secondar AI.

I noticed that you are seeing a naturopathic physician. Kudos. Naturopathic physicians have a solid understanding of the HPA axis and the diurnal cortisol pattern.

A saliva and 24 hour urine study, as has been recommended to you by your naturopath, is oft a better initial testing arena than is the baseline serum/blood cortisol that I recommended in an earlier post.

The saliva study, in particular, is able to identify potential high and low cortisol values in a 24 hour time period. Again, cortisol does not have a fixed or static level in the bloodstream. Cortisol secretion varies through the day and night - highest in the early morning and lowest in the deep night. A 24 hour saliva study is superior to a one-time blood draw in that it has the ability to detect aberrant cortisol value(s) at 6 to 8 specific times when a saliva sample is taken.

Do make it a point to get the saliva cortisol study done. This will give you a glimpse into your pituitary and adrenal gland function and communication with one-another. Do get the saliva study. It will be worth your while.

If your cortisol values are low as shown by the saliva study, DO NOT agree to a program of supplements that may be offered to you by the naturopath. Mushrooms and adrenal extract from pigs are oft touted as remedies for adrenal dysfunction. The supplements have little to no clinical benefit.

If your cortisol values are low as shown by the saliva study, do high tail it to an endocrinologist with explicit pituitary speciality. Secondary adrenal insufficiency is a serious condition that requires careful monitoring and treatment with oral replacement corticosteroids (and, often, androgens).

This is a long post . . . too long . . . but I know of 4 people on this forum that have come back to me sharing that they were diagnosed with secondary adrenal insufficiency only after seeking evaluation based on information shared here, as I am doing again. Possibly another person will be accurately diagnosed and spared additional heartache based on an opening up of conversation here.

I have Addison's disease (primary adrenal gland failure). It is no picnic. Adrenal insufficiency is a relatively rare disorder which makes its diagnosis and identification more challenging.
- Karen -

[Lydia666]

Glad all is well. Big sigh of relief! To me it sounds thyroid related.

[CRguy]

Has anyone had fatigue like this as a recurrence symptom?

I had fatigue after my initial resection ( chemo/rad/surgery/chemo ) BUTT no particular fatigue or changes between ileostomy takedown and diagnosis of lung met. I still don't have the energy levels I had prior to resection BUTT I am also 10 years older now
Chemo / radiation / surgery and recovery will all take their toll on your system and take a lotta time to "normalize" IMO.

BUTT ...... MissMolly's discussions about HPA / endocrinologists / further testing etc. = VERY GOOD ADVICE ... IME.
and Lydia666's point on monitoring your thyroid is well received also.... sometimes regular things still need to be tweaked.
( I've had my cortisols and thyroids checked as well as regular bloods )

I think THE take home message from this topic would have to be .. again IMO ....

ONCE we are stable / in remission / cured and out of active cancer Tx and follow up,
THOSE specialists kind of move along on their case load ... NO disrespect = it is no longer their job.

Getting an open minded general practitioner who will work WITH you to follow up with specialists and quarterback further testing for you is the Holy Grail for CRC patient after care .. that is both IMO and IME !
That is the path I am now following ... so far ... so good
AND don't forget to keep up with the regular monitoring for recurrences .... clear CTs 'R US !!!!!

Best wishes
CRguy

[peanut_8]

This thread has so much good information, I'm reminded again why Colon Talk ROCKS!

Hope you start feeling better soon, lpas.
peanut

[peanut_8]

oops double post

Colon Talk is actually twice as fabulous as I previously noted.

[MissMolly]

Am hopeful that maybe the fatigue will improve as I get further out from chemo.

lpas:
I would definitely pursue the saliva cortisol study as recommended by your naturopath to begin to establish whether or not you may be experience hypocortisolism (secondary adrenal insufficiency). The 24 hour urine study is more often used as a early indicator of hypercortisolism (Cushing's syndrome), which I would doubt to be the case for you given your prior exposure to corticosteroids and the greater likelihood of pituitary suppression and hypocortisolism.

Here's the deal about hypocortisolism (secondary adrenal insufficiency) . . . if indeed you do have hypocortisolism, it will not "get better" on its own. The passage of time, in and of itself will not, will not be of a healing effect as can be the case with other side effects of chemotherapy.

Hypocortisolism is like a sludgy gall bladder. A gall bladder that is filled with bile stones and enzyme sludge will not get better with time. An ailing gall bladder will become more problematic with time, eventually requiring surgery to remove the gall bladder. A pituitary gland that has been sufficiently suppressed by external corticosteroid use that it is no longer producing the hormone ACTH or that is producing only a drop of ACTH, will not generally "get better" and regain full physiological functionality with time. Time does not heal a demonstrably suppressed pituitary gland and atrophied adrenal glands.

What you will find is that you slowly get sicker and sicker over time. Over the ensuring weeks and months, the symptoms will become more pronounced and more frequent. It is less an acute light-bulb moment of feeling unwell and more a slow and insidious finding that you feel more and more unwell over time and become less and less able to compensate for feeling "crappy."

Adrenal insufficiency, because it is a rare endocrine condition, is not routinely on the radar of primary care physicians.

The incidence of adrenal insufficiency is one the rise, however, as cancer has become more prevalent and more and more people undergo chemotherapy with dexamethasone as a pre-medication. The incidence of adrenal insufficiency is making a true presence as more people with advanced staging undertake chemotherapy on a longer-term basis (ex. chemotherapy for life). Long-term chemotherapy was less common years ago than it is now . . . patients are exposed to dexamethasone for longer time periods and a higher doses than was previously the standard of care. Cancer patients are more at risk for developing secondary adrenal insufficiency without full awareness and watchful monitoring of prescribing oncologists.

It can be easy to blame fatigue on the effects of chemotherapy. For anyone who has is undergoing or completed chemotherapy where the fatigue is literally over the moon, it is prudent to explore testing for secondary adrenal insufficiency.

Adrenal insufficiency is a serious disorder.

It would be a travesty to have survived cancer treatment only to suffer the disabling fatigue and multi-organ damaging effects of undiagnosed secondary adrenal insufficiency without identifying the underlying cause and being able to seek effective treatment that can restore one's quality of life.

I can best describe living with adrenal failure as living with a horrible case of the flu . . . every day. The fatigue is drowning. You cannot will yourself or positive think yourself to find even an ounce of energy. The brain fog makes reading even the morning newspaper difficult. Words and ideas run into one another. One's digestive system is constantly queasy. Nothing tastes good. Eating is a chore.

The treatment for adrenal insufficiency is the taking of prescription corticosteroids (prednisone or hydrocortisone) to replace what the body would naturally be producing but is not. Some individuals also require replacement of aldosterone. There is an art and science to taking the prescription replacement corticosteroids, as one has to try to mimic the body's natural replacement. So it is not quite as easy as taking a pill twice a day and then going about your day.

Bottom Line: Anyone who is one chemotherapy or who has completed chemotherapy (especially someone who has been on chemotherapy on a long-term basis over months and possibly years) should keep the possibly of secondary adrenal insufficiency in the foreground of their minds. Unresolved fatigue, general gastrointestinal distress, low blood pressure, brain fog, sensory hypersensitivity . . . if present, discuss with your physician laboratory testing or saliva testing to measure baseline cortisol and 24 hour cortisol production. You will need to bring the possibility to your physician, as the disorder is not on the radar of most physicians.

If this information helps even one more person get accurately diagnosed, then that is reason enough for this thread. I certainly never say Addison's disease on my life's trajectory, and yet, I have it.
- Karen -