As some of you know, I've had (as with many others on here) bouts with extreme CRF (cancer related fatigue) and have struggled for the last year and some change with my energy levels.

I have posted several times on here for advice on this condition and due to the advice have been tested for my thyroid (still not testing in low range), testosterone levels (tested low, thanks Brian) and have had multiple blood draws to find culprits for the issue so far out of radiation. Where my life has been drastically changed by the cancer (I know, welcome to the club there) my quality of life has been so negatively affected by the fatigue my frustration levels have gone through the roof.

As a former athlete and younger guy, I prided myself in my physical conditioning before cancer. I still ran several miles a few times weekly, coached wrestling and continued to train myself and my boys in mixed martial arts. During treatment I lost 70lbs of mostly lean muscle mass and have had a horrible time putting that weight back on. After Brian suggested my testosterone levels be checked and found to be extremely low (125 where norm is between 225-1100 I believe) I was put on Androderm patches and was able to gain some weight back. The patches helped me to gain weight but also recover from physical activity, which would usually put me down for days afterwards, however had little impact on my energy levels to start with. My PCP believes it's my thyroid but due to not testing low, I'm unable to get on synthyroid to see if that helps relieve the issue.

As I am still on opiate pain medication, I found that I could take a few 5mg oxycodone tabs (not recommended by the way but I was desperate)along with coffee and I would be able to function for about 4 or 5 hours or so before crashing, usually very hard. I found myself in a situation where I needed to drive to Seattle (7hr trip) alone and getting hopped up on opiates just didn't sound like a good idea (I'm slow, I know). As a former Seattleite, I'm happily addicted to good coffee and never feel the caffiene boosts anymore, so I knew that I would not benefit from vivarin or tons of coffee (tried this several times), but needed something that would get me through it.

Enter 5 Hour Energy, (this is not a paid advertisement, I'll list the downsides to it here shortly) I had seen the tv ads and never even considered it before, however at this point I was willing to try it. After perusing the ingredients and being shocked at the amounts of B vitamins in it (not a good thing) noticed it wasn't full of sugar though so really thought if I had two handy I'd be able to make the trip.

Normally when I'm fatigued, I have a really weak feeling in my legs and they are rather shaky and I'm mentally tired, a few moments after drinking this truly awful tasting 2oz shot, the feeling in my legs subsided and I felt mentally sharp. I ended up cruising through the roadtrip without incidence AND in record time...without feeling jittery or anxious at all AND on only one shot of this horrid elixer. No crash, energy wise or vehicular!

In my week in Seattle I used it only one other time (to go shopping before making the trip back) and again, the fatigue/exhaustion issues faded from my legs and mentally. In fact just before writing this I was experiencing the crushing fatigue/exhaustion and took a shot and voila, energy. I had picked up a 6pack at Wally's for under $12, I think I paid above $3 per shot at a gas station.

Now the bad on this product. It uses caffiene ("equivelant to a cup of premium coffee", around 200mg) and a huge amount of B vitamins (3,6,9 &12) to deliver this energy. You can OD on large amounts of B vitamins if taken over time and not properly flushing your system with water and the effects of OD can be quite nasty, I'm sure there are people on this forum more knowledgeable then I in these matters and I hope for their input here.

To wrap this up, the product worked for me and is a better solution then what I was dangerously doing before. The other "energy drinks" like RedBull etc...I have no experience with but would like to hear if anyone has tried it and if it helps CRF. Until they get to the bottom of my fatigue issues or my body gets passed them, I've at least found a short term solution in pressing situations.

Please give me your input, but lets keep this civil to. I've admitted to abusing my pain meds here (dangerously so and I do understand I have an issue there) and that puts me in the idiot box, I know this so please save the verbal lashings.

Eric

Eric,
I can't comment on what is in this stuff, but I am glad you have found something that works for you.

I can totally relate to the fatique. For me the doctor's prescriptions was "get to the gym". Low testosterone level and all, it worked for me; but I was the only guy there with a PEG tube!

I was told the thyroid usually doesn't go haywire for at least a year and mine seems to still be holding its own.

Caffeine still works for me, at least in the AM, however a second boost of Sbucks at lunch only gives me the jitters, and while certainly awake,I sense myself being agitated, or short in attitude, probably not mentally pleasant to be around. (Some might say that is my normal state anyway, so Megan or someone else should offer the observations if my afternoons on a "push" of caffeine are real or my perception of how things are).

I would welcome finding an alternative that works. I too have seen the commercials, and now with reading this I am going to try it as well to see if it actually works. My hours at OCF are a far cry from an 8 hour day, more like 12-14, and I can't afford to just nap in the afternoon.

I don't know much about the downsides of B vitamins, and I thought they were water soluble so that ODing on them would be difficult, especially with those of us that drink tons of water all day long to deal with xerostomia. At one point in a doctors appointment, I revealed to them how much water I drink, as I am on the phone all the time with patients and more,and need it to talk let alone swallow, and the docs thought that it was actually detrimental to drink that much, as it flushed all the electrolytes out of my system. Clearly if this was true, I could drink one of those sports drinks to replace them, but chasing radiation induced caries all the time, I am reluctant to be rinsing my teeth in sugar water with regularity.

Anyone else who tries this stuff please post your impressions, I will also. If someone knows more about the B vitamin issue, I'd be interested in hearing it.

It seems that there is a problem with Vit B overdose:

http://www.acu-cell.com/bx.html

http://www.yohimbebark.net/vitaminb.html

http://en.wikipedia.org/wiki/Vitamin_poisoning

Don, I too hit the gym, I've got a personal one setup in my garage with weights, heavy bag, speed bag etc. Due to low testosterone levels it takes me forever to recover from my workouts though.

Brian, the B vitamins are water soluble however with the dosages involved with people that take these drinks daily they don't drink enough water afterwards to properly flush their system and that's how they get into trouble with them. Ultima Replenisher is a sugar free sports drink that will help replenish electrolytes etc...

Thanks for the replies and input and the links Pete

Hey, it's a guy thing. (first thread on OCF I have ever seen with only male posters). Before Cancer, we were like the Energizer Bunny commercials, and suddenly after radiation we are more like the 90 pound weakling in the Charles Atlas ads of the comics of my youth. Very very interesting and I await Brian's evaluation of this energy drink. I have just been able to quit taking afternoon naps yet still am nowhere near my former energy levels. The gym does help. I did find this review on MSNBC that downplays the Vitamin B issue:
Does it Work? MSNBC
Don: I too am the only one in the gym with a PEG but I use it as an excuse to preach about early detection of OCF while in the steam room or shower.
Eric, your "abuse" was just recreational use back in the day but I never drove on them, just stumbled back to my off campus apartment.
Pete: Interesting links, I did like the wiki note that no reports of any death due to vitamin poisoning. I had always read that we have the most vitamin loaded urine in the world,
Brian, good to hear that I am not alone in going back to caffeine. I will ask to have my testosterone checked next visit with my CCC after my upcoming MRI.
Now all we need is for DavidCPA to join in and share his tips on regaining energy as he is biking just like before his cancer.

OK, my thyroid crapped out before my 4th month post Tx and one synthyroid pill a day takes care of it. So just like everything else associated with our cancer, it's Tx, our side effects and our recovery there are no hard and fast rules that we can rely on. I personally don't have much respect for the science behind the hypothyroid problem "cure" since it seems the range of acceptable TSH levels is too great when prescribing a dosage of synthyroid to bring you back in line so to speak.

Even with a few more years off my clock I still have a high energy level as I too work long 6 day weeks and I still am able to ride my miles (currently I ride between 70 and 100 miles each week) and at a pretty good clip. I can still keep up with many young punks (that's the jealously creeping out) who are half my age.

I feel for you Eric. Are you being seen by a Endocrinologists?

Charm, David, thanks for weighing in. To be clear, I didn't drive on oxy...at least not far, definetly not a 7hr trip.

I have seen an Endo, with not much success there. As you said, the range in levels is just stupid and without a base reading from before, who knows what "low" is and without a lower then low read...I can't get synthyroid.

I am hoping and waiting for the day when I'm no longer on the opiates and my energy levels are at least somewhat stable.

David,

What happened to you when your thyroid went south? I am ten weeks out and am still losing a little weight each week, although am eating, have shakey hands, get very light headed on occasion, always cold.
My family Dr is sending me back to the Oncologist to see if my thyroid was affected during radiation. My blood test came back very low in the THS department and I never had a problem before.
Do you think it is thyroid problems? I think my Dr said he believes it to be overactive?

WFC

Hey Guys,
I hope you don't mind me chiming in being a female and breaking man thread...
I went with my mom today to see her lymphedema therapist, Kim. I had printed out the posts in regards to the energy drink and read them to her as she was working on my mom. She said that not being a doctor she wasn't absolute but felt strongly that you should check with your oncologist before drinking any more of these drinks. She said that the chemo you received could possibly still be in your system and it could cause an adverse reaction. She then went on to tell me that a woman who had had breast cancer and went through her treatments successfully went and purchased some vitamins. She said the woman died soon after she had began taking these vitamins,all of her doctors got together and reviewed everything and decided they believed it wasn't that the cancer came back, I think she said all her scans were clear but because of chemo and vitamin she was taking - she had never cleared it with her onc first. She said that the doctors did a mass emailing to spread the word so I suppose it could be found somewhere on the net. (I would look now but I have to leave soon for a job interview.) I would definitely ask your MO prior to drinking any more of this. I would also think that with your being so exhausted that to consume that drink would be very hard on your heart. I know that my mom is still wiped out at times, but seems to be getting stronger and stronger. (I'm always afraid to admit that.) She's finally able to do a lot of the things that she wants to do, she has gone back part time to her cleaning business and when she comes home from that she just crashes for about a day and a half. I blame part of her exhaustion that she still has on her lymphedema, she really has a hard time moving her head around from her bi-lat neck dissection. Just a thought, her therapist has done wonders for my mom, and though she feels tired for a short time after her appointments overall I think it helps her regain her strength. Have you seen a lymphedema therapist after having your neck dissection? Mom had several who had worked on her, we finally found one that is fantastic and to me is like a miracle worker. Kim says that someone who has had a neck dissection should see a lymph specialist immediately after to assess their condition.
You are all amazing to me, I don't know how you push so hard day after day...Super Heroes!!
I hope your strength returns soon.
Donna

wfc,

The symptoms of hypo (to little production) or hyperthyroidism are basically the same if I remember but what I noticed was I was always cold (in Fl in late summer and early fall when it's way way hot) but I would sweat enough to wet the bed. I lacked energy but who wouldn't after concurrent rad and chemo.

Eric,

Don't understand what you mean when you say you can't get synthyroid?

I am just reading and not about to join in this conversation LOL I shot my energy hand digging my garden for spring this evening. Took everything except tomatoes and green beans to my pile. Yep, whipped like an old mule in a coal mine now.

wfc - you must have misunderstood your doc. I have never heard of a head and neck cancer patient that went hyper and not hypo. You have typical symptoms of low thyroid output. Low energy, and inability to stay warm are the most common.

I posted this before, but just to hit the point again the pituitary gland is the master and commander of all your glands, and it is near the field of radiation and definitely gets some damaging scatter radiation. This can be immediate or years after treatment at onset depending on the amount of damage and its proximity to the field hit. An endocrinologist will look at all your hormone functions, and I had none that were not out of whack by year 4. Getting things right again takes a lot of time, and it is like shooting at a moving target as they continue to vary as time elapses, and when you adjust one it can impact the others. Lots of blood work, dose changes, and when you think you have it right, retesting shows something else is off. Pain in the ass, but necessary to get some normalcy back into your world.

Eric- even with no baseline for you to go from ( I didn't have one either) and your relationship with your docs, you should be able to get synthroid or the generic. The downsides to taking it are minimal and the impact of raising it is profound. I got energy from that and the ability to add lean body mass from the Androderm. At my high milage, the impact is not profound, but with three days at the club per week ( 1.5 hour each), one boxing and 2 with free weights, I have abs again, and arms that I am not completely embarrassed by like a couple of years ago. My biggest issue is lack of ability to do aerobics since the top third of both my lungs is fibrotic from the radiation, and lots of mouth breathing really irritates my xerostomia. Add to that the carotid occluding from the radiation scar tissue, and I get faint if I keep my heart rate too high for too long. So I am waiting to hear how David does the long bike rides....

Dan's blood tests came back showing hyperactive thyroid 20 months post treatment.

He had issues w/ not being able to gain weight, major fatigue, racing heart...and a host of other symptoms. Turns out it was toxic nodules that had grown on top of the healthy thyroid tissue. So, technically his thyroid was fine but the nodules were causing the symptoms.

After many months of debating about surgery or radioactive treatment...he finally got the radioactive treatment. This will kill the nodules and potentially some of the healthy thyroid tissues...which may mean he will end up on the synthetic thyroid.

Doctors aren't saying that radiation caused this...and, they aren't saying that it didn't.

Dry mouth surprisingly has not ever been an issue with me when I bike ride and believe me at the speeds I must ride to stay with the pack I have my mouth open all the time. The only problem I have is trying to carry on a conversation while riding. Really don't understand how some of these people can pull up next to me going 25 mph and want to talk!! At that speed it's all I can do to suck enough air in my mouth to keep peddling. Anyway as I try to prove that I am just as fit as he is that will dry me out in a a few sentences.

One thing that I do is make sure I have a piece of Biotene gum in my mouth. I don't chew it until the last 5 miles or so but it seems to help just dissolving. Of course I'm always hydrating throughout the ride.

In the vein that doctors most of the time can't say for sure what caused what, I am not surprised at their comment or lack there of. Thyroid nodules are common enough in non radiated populations to not put this outcome on the treatments. But at least in most of these cases, hypo or hyper, the resolution is simple, it is just the constant monitoring and adjustments after the fact that are a pain.

Sorry I wasn't clear. My insurance will not pick up a prescription for synthyroid unless I test below normal ranges. I've been using 5hr energy for the last week to supplement my energy levels with success however I haven't tried to work out with it yet...just the rigors of traveling etc and I've been able to keep up.

Martin used Feroglobin (recommended in the health food shop,but apporved by out consultant) one spoon a day. It seemed to help a bit. he also likes it because it lubricates the throat. It helps with low iron and low red cell counts.

Eric,
Since your TSH is running on the hyper side, I don't think they would want you on synthroid which will lower even more. What do they give people that are out of range on the hyper side? I would think that is what they would give you.

Take care,
Eileen

Eileen,

Hyper means that the thyroid is producing to much hormone and Hypo means the opposite. Most, if not all, of us that suffer from radiation damage to our thyroid develop Hypothyroidism.

Synthyroid corrects the Hypo problem by increasing the hormone level. An antithyroid medicine like Tapazole does the opposite and is prescribed for Hyperthyroidism.

Curiously enough the symptoms of either can be the same like feeling tired and the sweats so that's why it's important that the blood work be evaluated by a specialist.

David,
I know that hyper means it is producing too much hormone and if I remember correctly Eric's TSH is around .6, so he is very close to hyper which is why I said he did NOT want to take synthroid. The problem is he doesn't know what his TSH was before treatment, making it difficult to determine if it is really a thyroid problem or not.

Take care,
Eileen

actually my TSH was showing norm, I wouldn't mind taking synthyroid if that would cure the energy issues. For now I think I have them under control, the 5 Hour Energy works for me and I keep hydrated like we all do so I'm not to worried about a B vitamin OD. I couldn't get on synthyroid because my insurance won't pay until I test low.

I just got my testosterone rechecked and I was REALLY low, even with a 10mg/day Androderm dose, so I've been upped to 15mg/day. I don't mind it, I'll say I'm gaining muscle like a pro baseball player and I'm starting to look like my old self again and with the energy issues fading I'm starting to feel like my old self again.