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Scared and trying to make sense of it all...
by getkristan, Nov 05, 2009 12:02PM
Hi Everybody!
I've posted once last week and I'll recap a bit..
I'm a 36 year old guy who had a total thyroidectomy about 10 years ago after they found a papillary carcinoma in a cyst on a thyroid lobe. Been on Synthroid and/or levothyroxine since. No big troubles... a few paranoid scares after missing pills, but nothing major.
Within the past year or so these following symptoms have materialized >> Little skin irregularities in "gland" areas (forehead, around nostrils, chest, groin) later developed pelvic pain followed by achey (achy) glands followed by actual inflammations on/ around the pubic area ... sore throat... swollen lymph nodes ..which led me to the doctor. They treated me for STDs or a viral infection... the sores seemed to subside (although now after months they are still visible)... but I thought that was the end of it.
Now after a blood test last week it turns out that my TSH level is 14. I'm guessing it has been that way for a while and I have been experiencing the symptoms of hypothyroidism. How long have I been so off? Months definitely. A year...?
Recently there seems to be a "wierdness" in my upper chest and specifically right lung. In retrospect it also seems like my vision has noticeably deteriorated in the past year. Perhaps unrelated... I had almost no grey hairs until this year... now I have many. Also been feeling increasingly arthritic in the past 6 months to year. Also noticed my limbs fall asleep really easily now. I just assumed age was finally catching up with me... didn't think about it too much.
So... now my doctor has told me I must see an endocrinologist immediately, although she would not adjust my synthroid to get my TSH down, preferring to leave that to the endo. The wait is not easy for me. My appointment is on Friday the 13th this month.
Couldn't they have made it a different day?
So that's that... in my head the picture is this... my high TSH has been stimulating growth. It is supposed to make thyroid tissue grow but is it possible that it also causes "general glandy area growth"? Maybe sometimes "random erratic glandy area growth" (ie skin irregularites / grey hairs / skin texture changes / lymph swelling... cancer? ). Hopefully the cancer hasn't been stimulated as well. And hopefully the pain in my pelvis and weirdness in my right lung are just symptoms of the hypothyroidism.
I'll find out in the next weeks.
But here is the question... I always thought of my cancer 10 years ago as a random "out of the blue" thing. But now after reading more about the whole endocrine system some things seem connected... here is my brief medical history..
-- food allergies when I was a baby
-- parents separated messily when I was 2 .. lots of stress as a baby (there seems to be correlation between trauma at young age and hypothalamus issues)
-- asthma as a teen
-- oily skin
-- creaky cracky joints
-- light tendency to gain weight in a "girly" way.. ie around hips and thighs as well as man-boobs (not serious, but still...)
-- fast hairloss in my mid twenties (accompanied by strange overactive sebum production on the scalp at the time)
-- followed by thyroid cancer
-- struggled with depression and anxiety my whole life
So now I'm thinking that the problem isn't originally with my thyroid... but further "upstream" .. the pituitary? A wonky hypothalamus? It seems interesting that I have a lot of issues that seem to be related to male/female hormones. I don't have any gender identification issues... but I have been called a very "girly" guy (nurturing /sensitive/ non-competitive /most friends are girls /etc) Additionally the whole thyroid problem / hairloss / fat distribution / pelvic pain / low sex drive..
I dunno.. it seems like there is something there doesn't it? Some hormonal or endocrine strangeness that has been affecting me since birth and the cancer was maybe only a *symptom*. Or maybe I'm just connecting imaginary dots?
Is there anyone wiser than I am who may have some ideas?
Thanks everybody... I'm really glad I have found this forum since getting my test results... it's helping me a lot!
Hugs to you all!
Kris
I've posted once last week and I'll recap a bit..
I'm a 36 year old guy who had a total thyroidectomy about 10 years ago after they found a papillary carcinoma in a cyst on a thyroid lobe. Been on Synthroid and/or levothyroxine since. No big troubles... a few paranoid scares after missing pills, but nothing major.
Within the past year or so these following symptoms have materialized >> Little skin irregularities in "gland" areas (forehead, around nostrils, chest, groin) later developed pelvic pain followed by achey (achy) glands followed by actual inflammations on/ around the pubic area ... sore throat... swollen lymph nodes ..which led me to the doctor. They treated me for STDs or a viral infection... the sores seemed to subside (although now after months they are still visible)... but I thought that was the end of it.
Now after a blood test last week it turns out that my TSH level is 14. I'm guessing it has been that way for a while and I have been experiencing the symptoms of hypothyroidism. How long have I been so off? Months definitely. A year...?
Recently there seems to be a "wierdness" in my upper chest and specifically right lung. In retrospect it also seems like my vision has noticeably deteriorated in the past year. Perhaps unrelated... I had almost no grey hairs until this year... now I have many. Also been feeling increasingly arthritic in the past 6 months to year. Also noticed my limbs fall asleep really easily now. I just assumed age was finally catching up with me... didn't think about it too much.
So... now my doctor has told me I must see an endocrinologist immediately, although she would not adjust my synthroid to get my TSH down, preferring to leave that to the endo. The wait is not easy for me. My appointment is on Friday the 13th this month.
Couldn't they have made it a different day?
So that's that... in my head the picture is this... my high TSH has been stimulating growth. It is supposed to make thyroid tissue grow but is it possible that it also causes "general glandy area growth"? Maybe sometimes "random erratic glandy area growth" (ie skin irregularites / grey hairs / skin texture changes / lymph swelling... cancer? ). Hopefully the cancer hasn't been stimulated as well. And hopefully the pain in my pelvis and weirdness in my right lung are just symptoms of the hypothyroidism.
I'll find out in the next weeks.
But here is the question... I always thought of my cancer 10 years ago as a random "out of the blue" thing. But now after reading more about the whole endocrine system some things seem connected... here is my brief medical history..
-- food allergies when I was a baby
-- parents separated messily when I was 2 .. lots of stress as a baby (there seems to be correlation between trauma at young age and hypothalamus issues)
-- asthma as a teen
-- oily skin
-- creaky cracky joints
-- light tendency to gain weight in a "girly" way.. ie around hips and thighs as well as man-boobs (not serious, but still...)
-- fast hairloss in my mid twenties (accompanied by strange overactive sebum production on the scalp at the time)
-- followed by thyroid cancer
-- struggled with depression and anxiety my whole life
So now I'm thinking that the problem isn't originally with my thyroid... but further "upstream" .. the pituitary? A wonky hypothalamus? It seems interesting that I have a lot of issues that seem to be related to male/female hormones. I don't have any gender identification issues... but I have been called a very "girly" guy (nurturing /sensitive/ non-competitive /most friends are girls /etc) Additionally the whole thyroid problem / hairloss / fat distribution / pelvic pain / low sex drive..
I dunno.. it seems like there is something there doesn't it? Some hormonal or endocrine strangeness that has been affecting me since birth and the cancer was maybe only a *symptom*. Or maybe I'm just connecting imaginary dots?
Is there anyone wiser than I am who may have some ideas?
Thanks everybody... I'm really glad I have found this forum since getting my test results... it's helping me a lot!
Hugs to you all!
Kris
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... um... that was *quite* a novel there, wasn't it?
...That's what happens when I write a post in three sittings!
Well I have been learning alot of things since finding this forum, and have been trying to educate myself, too. First thing is to try and get the meds in the proper range to control the thyroid numbers. I had a partial thyroidectomy 12 years ago, I discovered a lump in my throat about six months after my dad died of throat cancer and I freaked out. Turns out I have hashi's and nodules go with it. My nodule ended up being the size of a lemon when they finally took it out, I was choking. And not alot of thoughts about it until I developed another nodule on the right side four years ago. It's about a two incher now. But, I tried to put it out of my mind until I started going 'hyper'. Didn't realize what that was and have been suffering for several years hyper . . .started with heart palpitations. The Dr. never bothered to check my thyroid levels, he just gave me a tranquilizer and said I was under stress! Well, I had a major tachychardia episode in Sept. and the Dr. gave me a beta blocker that almost caused a heart attack, and to make a long story short it was discovered my thyroid was going hyper. So lowered the dose and feel lots better!!!! But since being on this forum and reading alot on the internet etc. about thyroids I am starting to get a bigger picture of all of it. One thing I can remember as a kid is having a really bad case of the mumps. I was never overweight until after that, then I was grossly obese as a teen etc. I wonder if that's what started the whole thing. BUT . . .there's more and maybe something you should consider . . .in fact I want to start a whole thread on vitamin deficiencies and thyroid problems. When I was hyper, my Dr. told me my magnesium levels and potassium levels were on the low side. hmmmm, that was interesting to me. So I started having more natural things, like bananas, spinach etc. to get those levels up. Also, after I started a lower dose of synthroid my lips felt chapped, red, cracked, painful, sometimes tingly like I had eaten a hot pepper. I learned on the internet that could be caused by a vitamin B deficiency. hmmmm. went out and got a B complex and it is MUCH improved although not gone yet. Then I read on this forum someone had a vitamin D deficiency and felt better in the sun. I have always felt very sun deprived in the winter and will make a point to try and get more rays and I can actually 'feel' my body soaking in the rays, I can't explain it!!!! so I am now thinking of getting a good vitamin . . . .I go through mood swings and maybe it is a vitamin/thryoid thing. So you might want to look into that. One of my favorites that I DO take everyday is primrose oil, takes the bloated feeling away. So now I am on a mission . . .the Dr. said to stay away from iodine, but read an interesting article on that from another poster on this forum. What I might do is find a really good holistic, nutrionist type person and run all my ailments by them. Yes, I have many of the same issues as you, cracking joints as a kid . . .overweight, chronic constipation, lack of energy, vision issues, heart arrhythmias, and on and on. Kathy
With your symptoms and just the few lab results you posted, I would bet you a good cup of coffee that when your FT3 is tested that it will be in the low end of its ref range, further confirming hypothyroidism and problems converting T4 to T3. If that is the case, you will need to supplement your meds with a source of T3. Then you will need for your doctor to continually test and adjust your Ft3 and Ft4 levels with whatever meds are required to alleviate your symptoms, without regard for the resultant TSH level.
Also, are you aware of the link between hypothyroidism and low testosterone? I had a good link to that but have misplaced it. Will keep looking.
http://jcem.endojournals.org/cgi/content/full/93/5/1815
And here's another on the effect of low Vitamin D, which is a common occurrence with hypothyroidism.
http://articlet.com/article7816.html