I'm Joining Stupid Thyroid-Owners.com

[Blrfl]

I've already shared this with a few other people, but it occurs to me that given some upcoming events, keeping a lid on it will be difficult.

During a routine visit to my doctor last month for something unrelated, I mentioned that I've been unable to get enough sleep lately and get winded easily. He decided that since I'd just turned 40, it would be a good idea to draw a gallon or two of blood and run a battery of lab work. Everything came back looking great except Thyroid Stimulating Hormone (TSH), which was a very small fraction of what it should be. That led to a visit with an endocrinologist. Last week, I was preliminarily diagnosed with a condition called Graves' disease. (Nobody panic; it's not as grave or diseasey as it sounds. You can't get rid of me that easily! :D) There's one test that will confirm it, but it takes awhile to do, and I should have the results sometime this week.

Your thyroid is a butterfly-shaped gland that sits in the front of your neck, just above your collar bones. Its job is to produce hormones called triiodothyronine (T3) and thyroxine (T4), which regulate metabolism in pretty much every cell in your body. Normally, your pituitary and hypothalamus keep an eye on how much T3 and T4 are in your system. If there's too little, the pituitary produces more TSH; if there's too much, it produces less. Graves' is an autoimmune condition that happens when your body starts producing antibodies that attach to the TSH receptors on the thyroid, which are its on/off switch. The thyroid thinks it should be on constantly and produces gobs of T3 and T4, even though the pituitary isn't producing TSH. Nobody's quite sure what triggers it. One theory is that the antibodies produced in fighting off some other ailment are compatible with the TSH receptors.

The condensed list of things this condition has done is that it's left me perennially exhausted, unable to get good sleep, unable to think clearly, with tremors in my hands, having palpitations, anxious and very irritable. (I've noticed that despite a lot of effort otherwise, the irritability has leaked into some of my postings lately. If I've cheesed anyone off, I apologize.) Looking back at things, I've probably had this for at least the last two years, but in the last 6-8 months it has become a lot worse. I'd chalked it up to being busy, stressed, jet-lagged, older, overweight and out of shape. In any case, I'm glad we caught it, because it can lead to heart failure of left untreated. :eek:

All of this has affected my riding for the worse. My performance has deteriorated over the last couple of years to the point where a number of people have noticed and said something. In recent weeks I've found myself much more concerned with what's around corners or the behavior of other drivers than usual, and I've had a number of incidents where I've had to talk myself through things that used to be reflexive. Even my commute, which I can practically do in my sleep, has become an effort. Everything came to a head last Saturday while attempting a U-turn on a wet downhill slope in front of a downed tree. The anxiety made it into a very difficult three- or four-point turn, and at one point I found myself using the engine to overcome the friction between my boots and the pavement. I'm pretty sure they don't teach the boots-as-brakes method in Riding and Street Skills or Total Control. It didn't help that a minute or two later Gene pulled us into a parking lot that required negotiating a wet, steep, blind, downhill right-hander to exit. It takes a lot to admit this, but for the first time in ten years of riding, I found myself terrified in the saddle. Fortunately, I was able to force myself through it and get myself home in one piece.

I don't feel that I can ride safely anymore, so the ST is parked until further notice. If I start showing up at RTEs and tech days on four wheels instead of two, that's the reason. On the plus side, I can disassemble the bike and do some of the projects I've been putting off.

Graves' disease is incurable, but it can be brought under control. They're probably going to put me on antithyroid medication for a few months, which causes the system to reset itself and work right in about 30% of cases. If that doesn't work, the next step will be radiation, which will destroy my thyroid and require that I take thyroid hormones for the rest of my life. Surgery is also an option but is rare these days because the medications and radiation work well. The endocrinologist offered to put me beta blockers, which will knock out some of the symptoms, but I've decided to forgo them so I can get a more immediate picture of how the treatment is working.

If anyone else has Graves' disease or Hashimoto's, its cousin, I'd like to hear from you.

--Mark

[illzoni]

Mark,

That's rough. I know (at least my wife tells me) I'm a better person when riding regularly. Sure hope this works out for you.

Jon

[pretbek]

Mark, I believe I have neither Hashimoto's or his cousin's's. I'm sorry that you do have the latter, but very happy that it is now finally diagnosed! Now it can be treated and brought under control, so that you can be brought back to the real Mark, not the jittery, irritable, overtired and nerdy Mark. Hmmmm, not sure about that last symptom, I think that one is actually a talent and if not then it is still untreatable.

Please throw us a post now and then on the progress, see how treatments improve the hormone equilibrium. I hope that relatively soon you are back in the saddle again.

[John Anthony]

Mark,

Maggie and I will keep you in our thoughts and prayers. Good for being smart enough to figure out that something was wrong and getting in for a check up. Too many guys are too macho when it comes to medical issues until it's frequently too late. Please keep us posted on your progress and recovery.

J&M

[Blrfl]

Now it can be treated and brought under control, so that you can be brought back to the real Mark, not the jittery, irritable, overtired and nerdy Mark. Hmmmm, not sure about that last symptom, I think that one is actually a talent and if not then it is still untreatable.

:crackup If I were single, I'd say it's nothing a good pair of prescription beer goggles wouldn't help! :capwin::beer3:

--Mark

[NoBull]

Mark, I too had Graves desease. I actually experienced a "Thyroid storm" which sent me to the Emer room and caused issues with my heart beat. Be patient it took awhile to get the doses right. I went from 235lbs to 164 in a few months during my bout. You will need to do your homework and take charge of your care, DO NOT leave it in your doctors hands. I take Levothyroxine daily and always will. I had to do weekly blood tests for 6 months or so. I still get them yearly, most recently was a month ago. My TSH levels were good for five years, and I recently had to change doses. So 3 tests a month apart was necessary. Anyway I feel your pain, good luck and if I can ever offer any info or anything let me know..

I guess I should add I had the radiation treatment which caused the Thyroid Storm, my email is listed if you have any other questions and such?

[Putt]

Just the opposite here Mark, low Thyroid output, have to take
Synthroid every day (Levothyroxine).. No big deal.. If they
do "deactivate" your thyroid, make sure you get the dose that makes
YOU feel right, forget what the doctor might recommend.. They do not
make a dose in the amount that makes me feel "right" so I have to split
a pill to get the right amount (56mg is my dose, so I take 1./2 of a 112 mg pill a day).

Putt...

[Trekker]

Mark, My Pat has an under achieving Thyroid due to treatment for her cancer (which is now under control). She takes Levoxyl (sp?) every day for the rest of her life... and is doing really well in spite of her distaste for daily meds. Exercise, a regular & proper diet, and yoga have her feeling very balanced most days. When it was first diagnosed, her Doctor insisted she also take anti-depressants, which coupled with her not liking having to take a daily med actually made her more irritable. Once off the king of American medications, she has found a reasonable balance.

Plus it helps to have a Boy Toy that takes care of her every need.

[STreaker]

Graves' disease is incurable, but it can be brought under control. They're probably going to put me on antithyroid medication for a few months, which causes the system to reset itself and work right in about 30% of cases. If that doesn't work, the next step will be radiation, which will destroy my thyroid and require that I take thyroid hormones for the rest of my life. Surgery is also an option but is rare these days because the medications and radiation work well. The endocrinologist offered to put me beta blockers, which will knock out some of the symptoms, but I've decided to forgo them so I can get a more immediate picture of how the treatment is working.


As a Nuclear Med. Technologist (I'm NOT a doctor), I've treated Graves for years. Take the I-131 treatment! You take a pill, feel no effect, and in a few days the overactive thyroid starts to die off. It does not alway kill all the thyroid, so everyone's post treatment dose varies. You also want the beta blockers until symptoms are under control, you can do long term damage by not being on them. I-131 is one of the surest bets in medicine for Graves. I'm personally on thyroid for life due to an underactive thyroid, and you will be so also if you do the I-131. Taking the thyroid with my vitamins, etc. is a no pain way to feel normal. Good luck!

[STreaker]

Just the opposite here Mark, low Thyroid output, have to take
Synthroid every day (Levothyroxine).. No big deal.. If they
do "deactivate" your thyroid, make sure you get the dose that makes
YOU feel right, forget what the doctor might recommend.. They do not
make a dose in the amount that makes me feel "right" so I have to split
a pill to get the right amount (56mg is my dose, so I take 1./2 of a 112 mg pill a day).

Putt...


You might be taking 1/2 of a 112 mcg (not mg), or .112 mg.:)

[Putt]

You might be taking 1/2 of a 112 mcg (not mg), or .112 mg.:)

Yup :)

Putt..

[Blrfl]

You also want the beta blockers until symptoms are under control, you can do long term damage by not being on them.

I'd wondered about that. My endo said he may recommend them when we sit down to plan out the treatment but didn't think another week or two without them was going to do any harm. The list of side effects of beta blockers seems to be about half of the Graves' symptoms I have now, so it seemed like a wash.

I-131 is one of the surest bets in medicine for Graves.

I'm sure it gets glowing reviews. (BADUMP! (http://www.instantrimshot.com))

Thanks for the additional info. The variety of things people around here do for a living never fails to amaze me.

--Mark

[tdeboeser]

Knowing what is wrong is always better. Not only does it allow you take action to treat it, its a mental relief.

My Thyriod just stopped working about 8 years ago, but I didn't get it diagnosed for about another year and half. That year and half is was I "self diagnosing" myself, which was a bad thing to do. I thought I could fix it myself. My condition isn't curable either, but treatment is simple and it really works.

[BigTom]

Quote by tdeboeser
Knowing what is wrong is always better. Not only does it allow you take action to treat it, its a mental relief.

Amen to that. I am way glad that you caught your condition, even more sad that your MC is parked. Is a brutal hard decision. Thankfully, you did it well.

I too, have an auto immune disorder. Have been dx'd for near 20 years. For me, it is reduced to "Oh yeah. I'll have to .....", an inconvenience and planning (life) factor. I chose mine pretty carefully....

[Lou65]

Mark....I would caution you against letting the Medical Industrial Complex tell you you have a gland that needs to be killed. Unfortunately they cannot always be trusted. I suggest doing your own research in the what is condescendingly called "alternative medicine" sector....also read the small print on the meds....

Good write-up

and good luck.

[Blrfl]

Just got back from the endo, and the news is pretty good.

The tests for the antibodies fell out in such a way that it doesn't look like I have Graves. Instead, I'm going through what's called Hashi-toxicosis*, which in some patients is a precursor to Hashimoto's thyroiditis. So I'm going to start taking methimazole, which could have me feeling normal in 2-4 weeks. After that, it could take as long as a year for this to flop over into Hashimoto's, after which I'll get off the antithyroid medications and switch to synthetic thyroid hormones. That means no radiation, no surgery, and no thyroid extraction with an ice cream scoop. :D

I'll post something a little more detailed as soon as I have some time to do some research and understand what it all means; just wanted to share the good news.

--Mark

*Hyphen added, because the board nanny insists that H-a-s-h-i-t-o-x-i-c-o-s-i-s is a bad word.

[st1300r]

Mark
Great news. Hope you get back to feeling normal (what ever that is):D

[Mellow]

Good news Mark...keep us updated.

[Mark]

Very nice to know you'll be back to your old self (:eek: what am I saying?!!!) soon.
Which I hope means you'll be over your PMS too, right?

Congrats!
Mark

[pretbek]

That is good news! I'm all for keeping ice-cream scoops for ice-cream too.

[jwayden]

Also being "busy, stressed, jet-lagged, older (57), overweight and out of shape", I can sympathize.

And you should feel glad that you found this in your 40's, before you reach my ancient age and naturally become "perennially exhausted, unable to get good sleep, unable to think clearly, with tremors in my hands, having palpitations, anxious and very irritable"!

Actually, it could have been MUCH worse. Back in 1986 at the ripe old age of 35, I was feeling tired all of the time and (to make a long story short) after a series of tests was diagnosed with papillary carcinoma of the thyroid. I had what they described as a total thyroidectomy and radical neck dissection, and have been taking daily thyroxine tablets ever since. I don't sleep as good as I should, and I can't seem to keep the weight off; but I'm still here, and I'm still riding! :hotpepper

So hang in there Blrfl, and think positive!! :wave1::wave1:
.
.

[John Anthony]

Hey, that's EXCELLENT news! Thanks for the update, Mark. Glad to hear things are moving in the right direction for you.

John

[George]

Mark, glad its going to be under control soon. Hope we get to cross paths soon.

Autoimmune disease? Isn't life an autoimmune disease?

[Trekker]

Doode! Does this mean you'll be back on 2 wheels before the year is over???

Someone mentioned Ice Cream! :)

[BigTom]

Yahoo! Good news MR. Blrfl:)

So. Mr. Techno person-guru. Aren't you the one officially in charge of the board nanny? And can't you tell it/her to keep her pesky opinions to her/it's self?

Just wondering. That is teriffic news.

[Blrfl]

Thanks to everybody for all of the good wishes and thyroid tales. I've been suffering along with this to some degree for at least two years, and I'll be glad to get rid of it.

Autoimmune disease? Isn't life an autoimmune disease?

Only if you stay away from cars. :rolleyes:

Doode! Does this mean you'll be back on 2 wheels before the year is over???

That's a distinct possibility. It will depend on how things to with the methimazole. I think that after my experiences over the last few months, I may need to do some confidence-rebuilding after I get back on. Or maybe not. We'll see how it goes.

So. Mr. Techno person-guru. Aren't you the one officially in charge of the board nanny?

That's El Jefe's department. Moderators get to do some things, administrators get to do everything. I just get to smack Dave when he gets out of line. :D

And can't you tell it/her to keep her pesky opinions to her/it's self?

Let's see if it works: Hey! Board Nanny! **** you! :cus:

Hm... Nope.

--Mark

[Blue STreak]

Good news, Mark. Hopefully the drugs have you tip-top in no time at all.

[tdeboeser]

Good news, Mark. Hopefully the drugs have you tip-top in no time at all.

+1, good to hear you won't have to go to any extremes.

[Tourin']

Some of us (and perhaps many) have several issues now, plus we never know what time we have before something makes life more uncomfortable. I know I have issues that make long riding problematic. But I'm trying to cram some saddle time in, in case I have to STop.:(

So, the only way for everyone to show they are concerned about this thyroid case and others, is to ride over to your favorite ice cream place. Hmmm, may have to call it a scoot and scoop or sump'n?:07biker:

[bnason]

I had Thyroid Cancer in 1995. They took out 3/4 of my Thyroid. I take Snythroid every day. One little pill a day. And I am the type that doesn’t like to take med's. I don't like to go to see Doc's either. But guess what ........ I do now. Every 6 months I see the Doc. and they check my blood.(I hate needles) I still don't like to see Doc's, but oh well. I was not a very good person in the Hospital. I didn't want to be there, and I told them so. (LOL@me) Well that’s a long story, and their isn't enough space on here to tell it all. But anyway, I came thru it. ( It's hard to be mean to people when they are being nice to you... LOL) I mean I was the type of person that told the nurse to take out my I-V because I didn't want it in me any more. And she said that it had to stay until the Doc say's it come out. So I told her that wasn't his choice, so I pulled it out right then. The Doc and I went around about that. He told them to put it back in. Well lets just say it didn't go back in. He was upset with me , I told him “OH WELL get over it! ... it’s NOT GOING TO HAPPEN.” ( I'm hard headed, I know) ...... Any way I have been clean of Cancer since then. ..... GLAD TO HEAR YOU ARE DOING FINE. ..... Bob.

[Blrfl]

A couple of people have asked, so here's an update:

Tuesday was the two-week mark on the anti-thyroid medication. I've been taking it at 7:30 p.m., and I get about 15 hours out of the dose I'm on. I'm sleeping a lot better, I don't wake up as tired and I do pretty well until about 11:00 a.m. After that it's a long descent into horrible; by 5:00 I'm back to most of the symptoms and haven't been able to think straight for a few hours. We'll probably adjust my dose in another couple of weeks when I go in for a followup. I do seem to be having more time when I feel "like me," which is a welcome change.

On the bike front: Last night I had a seat on the ST for the first time since I hung up my helmet a month ago. I'd had a very stressful afternoon and drive home and was kind of wound up. (That's one of the side effects of this thing: if you get wound up the symptoms get worse and it takes quite awhile to spin back down.) All of the anxiety from the "big bad ride" came rushing back, so I bailed out. Tried again tonight and it went a little better.

--Mark

[sennister]

I might be joining your club. Is there a membership card I need?

I went in for a typical physical and the Dr noted that my Thyroid was inflamed. She was a little concerned about how big it was so I am going in for more tests. They drew blood to run some tests and I have to go in for an ultrasound on my thyroid. Of course after she pointed out that there may be something going on there I noticed that it was a little sore when I would look down. If she hadn't said anything I would have likely never noticed it. Oh well I guess it is best to get it looked at.

[Brighteyesue]

My Mom had her thyroid removed and she has to take thyroid meds too. She is doing great now. Hope you are back to your feeling good self soon

[Blrfl]

I might be joining your club. Is there a membership card I need?

At this rate, we may have to have some made up. :D

--Mark

[gec343]

The last couple of years, I have been feeling quite fatigued, so decided to change doctors, since my old doctor was aloof, to say the least.

After a ton of blood tests, the new doctor found that my Testostrone level is way low, so I am starting testostrone injections of 3cc, starting this Tuesday. These injections will be once a month for three or four months.

I know the feeling of not feeling stable on the ST, since I was starting to feel that way, due to the fatigue. Howpefuuly, these injection will do the job.:03biker:

[bayoubear]

I sometimes experiance a sharp pain at the lower part of my throat when swallowing or when I look up and then that part of my throat will remain sore for a couple of days ....is this something anyone else as had as a syptom of a tyhroid proplem ?

[bayoubear]

plus I also have trouble sleeping and get out of breath pretty quick . while I can stand to lose a few pounds I'm not that overweight or at of shape .

[skidlid1300]

Plus I also have trouble sleeping and get out of breath pretty quick . while I can stand to lose a few pounds I'm not that overweight or at of shape .

Seriously, go see the doctor and let them know what's goin' on with you. A sore neck just from looking up / down? If it has been going on for a while, schedule an appointment... :) It could be something else, unrelated, but at least it's taken care of...

[gec343]

I have a friend who was having trouble swallowing food. He went to the doctor and found that he had throat cancer. It was found in the early stages, so he has recovered. Don't take any chances, get a check op!

[Blrfl]

I sometimes experiance a sharp pain at the lower part of my throat when swallowing or when I look up and then that part of my throat will remain sore for a couple of days ... plus I also have trouble sleeping and get out of breath pretty quick .

Yup, that sounds like it. Your doctor will test your TSH level if he's on the stick.

--Mark

[bayoubear]

I went to my doc and explained this and he didn't run any test for any tyroid anything

[bayoubear]

also can this affect blood pressure and sugar levels? ...because he put me on meds for both of those

[Blrfl]

(None of this is medical advice; just what I've found out in following my own problems. So it's potentially worth what you paid for it.)

It can increase your blood pressure, and did in my case. Thyroid hormones do regulate your glucose levels, but I don't know which way. The Hemoglobin A1c test is what they use to get a better feel for how your blood sugar has been over the longer term and determine whether or not you've developed diabetes.

Personally, if your GP was that quick to put you on diabetes medicine, I'd at least get a second opinion. Better, see an endocrinologist, because diabetes and thyroid problems both fall into that specialty.

--Mark

[bayoubear]

did the A1c test and said at higher risk for diabetes but not that I actually do have it .

[Blrfl]

It's been awhile since I posted an update and a few people have asked, so here's the latest...

In mid September, my T3 and T4 came back low, and my medication was cut in half. That actually worked out well for a few days, but over the next few weeks things went downhill again. A week or so ago, I tested low again, and my endo decided to go for the gusto and take me completely off the methimazole. (Which means I don't get to make "meth" jokes anymore. No big loss.)

After a week off the stuff, I'm still going downhill, batting about .600 on the list of symptoms. That and the trend in my test results are a pretty good indicator that my immune system is winning and my thyroid is starting to shut down. This means that phase two of this thing, honest-to-gosh Hashimoto's disease, is underway. At some point soon I will probably start taking thyroid hormones to make up for what's no longer being spewed into my system. I have a feeling it's going to be a moving target for awhile, but at least I'll have something to shoot at.

At the rate things are going, I think I'm going to have to write off this riding season completely. The cold weather isn't something that someone who's hypothyroid will stand up to very well, and I really don't have the metal acuity or the physical stamina to ride. I think I will be in dire need some range time to get my confidence back up, which will probably have to wait for the spring. The two times I've been out since all of this started were "okay," but I think I was trying to convince myself that they were better than they actually were.

So I'm kind of bummed out about all of this, but being bummed out is one of the symptoms of this thing and I'm not going to let it bother me too much.

--Mark

[Bones]

Thinking about you, dude. Hope this thing gets figured out soon. :-)

[BigTom]

Thanks for the update, Mark. I wish it were better, really glad it's not worse.

You are a better man than I am, Gunga Din. I've only quit riding when I had to decide ride or drink. I had to drink. Until I didn't, at which time I went back to riding. Which I'm sure you will when you are right and ready. I had to fall off a couple of times before I knew:)

[George]

Pfffftttttttttt, Tom. I can fall off _without_ drinking! :D

Mark, health is more important than bikes. Hang in and it'll all come around in due course.

[pretbek]

Sorry about your loss (the riding season), but I'm glad you are making progress. Good luck with the shooting, I hope you get some solid hits very soon.

[John Anthony]

Mark,

Thanks for the update. I totally agree with George. And besides if riding isn't right with your head right now, nothing goods going to come from saddling up. Springs not that far off.

John

[st1300r]

Mark
That plain sucks. At least you have a plan of attack, and hopefully you get your hormone levels balanced. If your body is telling you not to ride, listen to it. Spring isn't that far away. I wish you well.

[Blue STreak]

Bummer, but better to lose the riding season than life or limb trying to push the issue. You're still a young man---lots of riding seasons left.