33 replies to this topic

[roamingdoc83]

Thyroid is basically 'normal'... Testosterone is very low now... my 'old' oncologist has never heard of the 'connections' between testosterone deficiency and TKIs (TREY! That has to be amazing...).  A broad based study here is amazing (remember, I am not saying that any of the TKIs are "bad" in the sense of intentional or anything like that - excepting cost of course, that is intentional ;^)  ... read this:          http://www.ncbi.nlm....les/PMC3039175/

 

So my Testosterone is going lower, Thyroid is (currently) normal, Cortisol is a tiny bit elevated (stress, etc)... and all my cholesterols are good... but I'm buying dresses now and into a B cup...  all be safe, I need to go shave my legs.

[roamingdoc83]

Okay, one last link to a 'late' report using MALES and not rats.... "you dirty rat" (in my best Jimmy Gagney voice!)... EVERY SINGLE MALE ON THIS forum should read this and make sure your Onc reads it too!

 

                                     (agree to the stip on opening to view)

                           https://ash.confex.c...Paper46216.html

 

These are men, age 40s, who saw a 1/3 drop in their Testosterone upon just 4 months of treatment with the TKIs.

 

"Our study suggests that in patients with CML TKIs are associated with significant decrease of sperm parameters and decreased concentrations of serum T, LH, FSH. These potentially toxic effects on spermatogenesis are less prominent in patients treated with Dasatinib compared to Imatinib and Nilotinib."

[Red Cross Kirk]

Okay, one last link to a 'late' report using MALES and not rats.... "you dirty rat" (in my best Jimmy Gagney voice!)... EVERY SINGLE MALE ON THIS forum should read this and make sure your Onc reads it too!

 

                                     (agree to the stip on opening to view)

 

These are men, age 40s, who saw a 1/3 drop in their Testosterone upon just 4 months of treatment with the TKIs.

 

"Our study suggests that in patients with CML TKIs are associated with significant decrease of sperm parameters and decreased concentrations of serum T, LH, FSH. These potentially toxic effects on spermatogenesis are less prominent in patients treated with Dasatinib compared to Imatinib and Nilotinib."

 

 

I don't see the link. Could you try posting it again. Thanks!

[roamingdoc83]

Sorry RCK... that is in fact one of the side effects of low testosterone, the inability to focus, concentrate, recall. The link is amazing in that, across the board, younger men with moderate to high levels of free Testosterone find nearly 1/3 to 1/2 drop after four months of any TKI!

 

I can say this... the old ideal (not the hippocratic oath but one coined by Thomas Inman) of "At First do no harm" has been replaced...

it is now  "At first...do no thing!"   I cannot get a single health care professional to get off his dime and help me because, even though all my blood tests show an abysmally low (not low normal, but LOW! Below LOW!) Testosterone level and I am becoming more and more handicapped daily (fatigue, sleeplessness, weakness, forgetfulness - what was I saying?) and ALL the other countless BLOOD TESTS show nothing out of the ordinary, they simply don't know "what is causing the problem" so they won't move. What fools... fireman to fireaman.."Wonder what called this four alarmer?", "I don't know but who cares, let's put it out and then figure the rest out!"

[roamingdoc83]

Finally, in middle April,  found a NP that looked at the Blood work and said, "You need T therapy now"... I have been using a small topically administered (with DMSO and an oil based T prescription) for nearly two months...

 

Much more energy. Losing weight. Far less fatigue in the afternoon, can now do the 'honey do' list, sleeping through the night, less grumpy 'she says', have some 'interest' in things again and no more fogginess, loss of memory, concentration, etc... BUT!!! And here is what many do not know... with Low T your 'blood pressure goes up", "your Cholesterol goes up", "Your arteries harden (while most other things soften!), and the likelihood of death is markedly increased in men with low T.

 

My count is about middle normal. I have no side effects. Will do all blood again in early July... NP said I would need it always.

Go get yours checked.

[JPD]

so there are no issues with combining t therapy and our TKIs?  No interactions?

 

I think mines fine, but will get it checked in a couple weeks just the same

[gerry]

Apparently you'll be able to read maps again without turning them round to the direction you're going.

http://www.abc.net.a...t/testosterone/

[roamingdoc83]

JPD - No, I've had not a single issue with the supplement. Remember T is a normal product in the body... small doses daily, as I am doing, are not the same as what many associate with Testosterone (giant weight lifters who take 400 to 800mbs "daily!"), I am getting about 4mgs daily. The symptoms of "low testosterone" were listed in this thread earlier, see if they apply? If they don't, you can still get a blood test and see, but it would be unlikely if you have absolutely 'no' symptoms... I had plenty.

 

Mr. Tee - Doctors are supposed to 'listen' to their patients. When one complains of signs and symptoms (that is the medical term) they are supposed to seek out a cause first and then, second, a solution. I did my own blood work (I can order blood work as a licensed health care DC in CA) first 'after' I noted these signs and symptoms in myself. I did send two of the links to my Onc and he said, "Oh, not enough represetation in numbers" and more or less dismissed it. But I say that, when you study even just 20 men and all notice a drop then perhaps there is something to it... of course even the manufactureres indicate 'rare'side effects including 'a drop in testosterone' levels so they know as well... but I would be more than 10% are being effected...

JUST demand the blood work, "free testosterone" is what you want checked... 

[roamingdoc83]

Apparently you'll be able to read maps again without turning them round to the direction you're going.

http://www.abc.net.a...t/testosterone/

Over the years I've read a lot on Testosterone... mostly because, without knowing the cause, I had a lower than normal amount (while on TKIs - then off TKIs for two years, normal, then, recently back on, low and lower).

First, the prostate issue is now largely contested by many doctors. Men who have prostate issues are usually older or elderly. The levels of Test are lower in that age bracket, not high. The young men with 'higher' levels of Testosterone do not (generally) get prostate cancer (generally!). A proper level of testosterone may be preventative. In any case do a google search for the links and you will see that many doctors are looking for some other trigger that is not necessarily T related. I do know that the study first linking (supposedly) testosterone and prostate CA was done many years ago. Read this interesting article about it - http://tinyurl.com/oxllcfy

and then read this article about testosterone in general -  http://tinyurl.com/6mm54sr  -  both are reflective of the changing thoughts on the connection.

Low testosterone elevates a person's 'likelihood' of death - greatly!  http://www.webmd.com...one-early-death   -  88% increase!  Another article -  http://www.terrapape...s.com/?p=37719  -  significantly one should realize that major changes in the body occur from low Testosterone. Higher BP, higher cholesterol, hardening of the arteries (which is complicit in the BP), issues with immune system, heart function, so forth... it really is a major player. Check into your levels.    

[tazdad08]

I am on Tasigna, but low T has been an issue for a couple of years now. I am 43, diagnosed at 39. I do have to get my shot every other week now. 

[roamingdoc83]

I am on Tasigna, but low T has been an issue for a couple of years now. I am 43, diagnosed at 39. I do have to get my shot every other week now. 

 

I thought of injections and was offerred that alternative but decided to go with a 'mix' applied topically. Takes less than a minute and no disposal of needles, etc. I use DMSO as it really brings over 90% across the skin barrier and has less change of 'rubbing' off (not at all greasy). But keeping the T normal is the main goal so "however..." 

[scuba]

Interesting thread - my T level was low side of normal a few years ago - no need to add T according to my PCP, but he told me it may be necessary in a year or so.

 

At the same time I had my T measured, I also measured a very low vitamin D (near Rickets level!) level. I was just getting ready to get back to running and get in shape (the reason I decided to visit my PCP in a long long time). One year later (2014), my vitamin D level climbed to high normal and I returned to my normal weight and back in shape. At my one year physical, my T had increased to normal. My doctor wasn't surprised - but said most of his patients don't exercise much and need the extra T he prescribes. And he told me about the importance of vitamin D in creating T.

 

There is a correlation between low vitamin D and low T. Vitamin D is used in the production of Testosterone (and a bunch of other hormones as well).

 

http://www.ncbi.nlm....les/PMC3712348/

 

If you are overweight  (and low T is a negative feedback loop on that as well) - start exercising to lose weight. Lifting some weights in the afternoon will naturally increase T - but needs to be a habit. In addition to running most every day, I do some sprinting to increase intensity. I lift free weights but not often enough.

 

http://www.webmd.com...nd-testosterone

 

As we get older, it is tougher to maintain T levels so patches or extra T may be necessary. But start first with measuring your vitamin D to make sure it is in the normal to high normal range and get some exercise to shed weight.

 

And the old adage applies - use it or lose it. 

[snowboots]

I am now thinking that maybe my Gleevec 400 is causing thyroid problems - that could be why my hair is falling out! Have a doc appt. next week and will ask for a check.

[roamingdoc83]

[Scuba]

Right, D3 is significantly important... actually many nutrients can be out of balance as we get older (less exercise in some, less outdoor time in some, so forth). I am outdoors in the sun about 3 hours daily (and use sunshade and that can effect D3)... But the significance of all the tested male subjects in the link above (mine) having "lowered" testosterone after 4 months of TKI use is certainly pretty clear. And I am going in for more blood work. I lift almost every day... have since I was 12 along with other exercises so I should have at least normal T, but it was drastically low. I will keep blood work up every four months and will add D3 into the mix, see how that is doing DHEA is another often lowered element in men as they age. It can be taken in 25mg doses "if" low... and will help too.

[Snowboots]

Alopecia (clumps falling out) has numerous causes but thyroid certainly could be an issue. One of the links I provided in this thread speaks to 'which' TKIs have the most effect on Thyroid. Remember, lots of doctors see "low normal" as acceptable. It can be, but in many people that level is not sufficient for 'happy' life... we've created so many inputs into our lives with all the various chemicals in the environment, foods, etc... well, just saying 'low normal' may not be the best benchmark. Clinical signs of low thyroid are: dry skin, cracking hair, cracking fingernails, variations in bowels, fatigue (sometimes extreme), low libido or interest in anything, and lack of concentration. Of course you want to know what your T3 levels are... good luck.