Hello again. I am sure this has been discussed before but with 234 pages of posts to sift through maybe you all can put me in the fast lane.
I am a little over 3 months out of treatment and went to see my GP for an overdue physical. Blood work showed low TSH (0.384 ulU/ml), high B 12 (1018 pg/ml), low vitamin D (29.7 Ng/ml) and low free testosterone (5.5 pg/ml).
My GP wants to retest the TSH levels in 2 months and my urologist is putting me on a testosterone gel.
While I am over that bone rattling fatigue from treatment I get moments of intense sleepiness and just nod off. I will wake up at my desk at work or on my couch at home and don't remember falling asleep. Can't stand the cold and NOW I am getting some hair loss. I have a ton of hair but after a shower it is all over the towel and my hands. I had no hair loss during treatment except for the beard.
I don't see my oncologist and radiologist till next week for the 3 month follow up. I am no Einstien but it sounds like I fried my thyroid during radiation. The B 12 levels concern me. I had Hep C for an unknown period of time (probably a couple of decades) and was only cured in 2013. Was also a pretty heavy hitter on the bottle before quitting 5 years ago which is why I am in the mess I am in now.
I know you guys are not medical professionals but any input would be appreciated. As usual I get all twisted over this and waiting for an answer drives me batty.
Thanks
Ed
Ed, a lot of patients end up with low TSH after radiation. I don't know how common low testosterone level is but my husband had erectile dysfunction as well as the low TSH after radiation. His conditions were monitored by his GP. This was okay for us as we could get in to see him any time we needed but an appointment with the oncologist would mean a longer wait. Anyway, I think it was the expectation of the oncologist that we should go to the GP, who, of course, could consult with the oncologist if the need arose.
Do you know if you have sleep apnea? You might want to ask for a referral to see a respiratologist and get tested in a sleep lab.
I know this is cold comfort to you but I do hope you are somewhat reassured.
Thanks Gloria. My GP did mention getting tested for sleep apnea. Thanks for jogging my memory on that.
Good to know that others have experienced the same thing. I appreciate the response!
Ed
Make an appointment with an Endocrinologist and get your thyroid checked out.
Personally, I would hold off on the testosterone medication until the thyroid issues have been better defined.
The reaction to cold temps and the fatigue are standard thyroid markers for issues. Hot flashes?
The thyroids are tiny and are usually in the line of fire during radiation treatments.
Good Luck
Ed,
I've had some of these, but my TSH levels are high from radiation, indicating hypothyroidism, causing coldness as one of the symptoms, but when the TSH levels are low, it can be hyperthyroidism, caused by a number of factors, but secondary hypothyroidism can occur too from radiation when TSH levels are low, maybe more to do with the pituitary gland, so maybe you may want to clarify that.
My vitamin D, which is actually not a vitamin, I still call it so, is low sometimes. It's from not being in the sun too much in my case, diet, and from CKD, since I believe it's released by the kidneys. Occasionally. I had to take prescription dose vitamin D or D3, 50,000 units a few days, then I take or supposed to take 1,000 units OTC D3 daily. They say above 5,000 units a day should be monitored by blood work to help prevent toxicity buildup, which may be difficult, so I heard.
I have had low vitamin B12, not high, which can cause hair loss. When mine was low I injected myself with B12 I was prescribed. I'm borderline now, and has something to do with RBC production, which is sometimes low, but my hemoglobin is consistently low. High B12 can indicate other conditions or mean nothing, so maybe you want to look into that also.
As far as testosterone, they have oral pills, gels, and injectables to help. I was taking some, but after a recurrence in 2012, I didn't want to take them anymore, not that it can cause cancer, but incase I still had microscopic cancer and cause it to enlarge and or grow at a faster rate. Low testosterone has their own health conditions too.
I see a nephrologist, oncologist/hematologist, besides others, and between them my blood work is being monitored and treated, often with 18-25 out of range areas, but are only concerned with a few or when there is sudden change, but say I'm doing good. They also test the T3 and T4 levels, which can help in diagnoses and confirmation of certain conditions, like thyroid. I stopped seeing an endocrinologist for diabetes years ago since the doctor often had a 6 hour wait, but that's another specialist some may see.
Good luck
Good luck
Thanks for the reply bjm!
I will start snooping around for a good endocrinologist. I'll see if my oncologist can recommend one. Not getting any hot flashes but the cold just kills me.
Thanks!
Ed
A 6 hour wait?! That's insane. I would have stopped going to.
From what I have read, the high B12 can be a marker for cancer. I just wonder if it would be high because I had cancer already. My T4 is within range but on the lower end.
I guess I have to be a little more proactive with seeking out different medical advice from professionals. As opposed to waiting 2 months for a retest.
Thanks for the input Paul!
Im not aware of oral cancer being diagnosed with a blood test. After going thru OC chemo treatments, patients can expect their blood counts to be "off". This can take a very long time to return to normal or they may have a new normal. Testosterone and thyroid numbers are ones that are most commonly affected. This is why I always advise patients to have a blood test done including thyroid and for men testosterone levels prior to having any treatment. Its important to get the correct numbers so doctors have that as a baseline to compare with after treatment numbers.
Being 2 months post treatment you can expect your blood test numbers to be off. Chemo for OC can have a major impact on blood counts. This is especially true for the white counts. Usually the testosterone and thyroid numbers are affected during the recovery phase. Its so important to avoid crowds, public places, wash and/or sanitize hands frequently during and after treatments as your immune system isnt functioning as well as before treatments. Recovery can be a very frustrating and long road. Patients can never recover as fast as they think they should. Unfortunately a complete recovery from OC and its barbaric treatments can take an entire 2 years. Most patients will make their biggest improvements within the first 6 months after treatment ends. Patients can expect to see smaller improvements with dry mouth and sense of taste until about the 2 year post rads mark.
Heres a link from the main OCF site that explains after treatment complications. I think this may help you to better understand everything you have been thru and how it can affect you for a very long time after treatments end. Some of the side affects mentioned in the above posts are related to your treatments and not from low testosterone or thyroid. They need to be relayed to your current treatment team so they have complete knowledge of whats going on post rads. Cold sensitivity and poor circulation after having chemo is common for OC patients. It could be a signal for a bigger issue like neuropathy. I suggest you may want to hold off seeking out a specialist for your blood counts until you are further out in your recovery. An endocrinologist probably does not see many oral cancer patients (if any) who have just finished treatments. Your ENT and oncologists should be monitoring your blood counts every so often and prescribing any medications you need to correct anything that is not normal.
OCF main site --- After treatment complications
Thanks Christine.
2 years, huh. I had asked my Dr a couple of times when I could expect to start feeling normal again and never got a good answer. I see my oncologist & radiologist next week. I'll give them the blood work I have and let them figure it out. Good to hear that this could still be the Chemo affects. I am just getting a little confused as to how proactive I should or shouldn't be with seeing Drs
"Patients can never recover as fast as they think they should." That hits home big time Christine. Talk about the long and winding road. 😳
Ed, from your other brother Ed, what you describe is fairly common from radiation on, for life and even sporadically. If you like to read, read about the H-P-A axis. It's not clear if it's the trauma of everything in cancer world being cumulative but ongoing stress triggers a lot of chemical reactions in our blood.
As the body adjusts, the data to the brain and the instructions from the brain travel through severely damaged nerves from radiation. Find a good family doctor that analyzes blood to determine health status and as the body settles, try and keep track of how you feel and what the labs say. Things may feel fine but be skewed but it also helps in pinpointing strange things happening. What was normal before may not be the same.
Do you eat a lot of soy products by chance? That can increase B12 and also lower LH hormone levels that are used to produce testosterone. I stumbled on that once and once taking Megalace when I lost intestinal motility. Both a heavy soy diet and Megalace did the same thing. Here's all the high B12 foods: eggs, milk, cheese, milk products, meat, fish, shellfish and poultry...pretty much everything I eat. I have to keep track of my B12 regularly.
I started taking D3 in the winter about 5 years ago because of a sudden drop. I really stay on top of that for many reasons mostly because it makes me feel better. I use drops in my (feeding tube) breakfast blends every day, 5,000 iu now, up from 3,000 for a long time. I have most things checked every 3 months. My last set of labs were the best in 30 years even being on a feeding tube for 9 months. My LDL was 106 and fasting glucose 109 with everything else fine.
Thanks for the reply Ed. I had answered you a couple of days ago but I don't see the thread here anymore. Guess I never sent it or pushed the wrong button.
The diet is an eye opener. Everything you mentioned is what I eat and the 530 cal Boost drinks are soy based and contain 60% RDA vitamin B per box.
None of my cancer doctors seemed concerned by any of my work ups. I think I am just going to concentrate on staying as healthy as I can and stop worrying about everything. Obviously the combination of cancer, Chemo and radiation is going to affect me for quite a while.
Ed, I'll help you to check the posts you have made. On any post, click on the user name thats on the left of a post. On the drop down window, click on the last option view posts. That will open a window that shows all of the posts that member has made. It works on checking your own posts too.