thyroid question

Sure, I go see him exactly one month from today!

My Dr. is Christian Tuan, studied under the "world's foremost expert" in all things endocrine at Stanford. As far as the weight loss, CT would prefer I not go under 130 (I read your posts to figure out why you might not agree with his rationale). Most weight loss in patients, if any, comes from the bloat. I swear I was carrying 15 pounds in my eyes.

As for the TSH range, my lab considers .33 - 5.5 as normal. CT knowing that anything over 3.+ might be borderline for the individual might be using 1 as a mid-range number. I've never had problems keeping weight off, usually the opposite. But I'll ask him.

Feel free to email any other ?'s. -- kk

Hi noname- was out of the country when you last posted to me on this thread. I have not had much success with treatment. Despite upping my dosage my TSH levels rose! And, what I thought was sleeplessness due to overmedication is not. My Doc feels it's likely sensitivity to the meds because with a TSH of almost 7 I'm certainly not hyper. I have another blood test in 2 weeks and then an appt. with the doc. Honestly, I'm not pleased with how my treatment is going and am seeking a second opinion. He also never gave me an definitive answer on the Reynauds. He dismissed it as not serious enough to be Reynaud's Syndrome- said it was likely Reynaud's Phenomenon, which is not an autoimmune disease but mirrors the symptoms of such. Do you know if there is a test that can be done? Glad to hear you're doing so much better!

RB

Ps: Kathryn- I'm glad your treatment is working for you! Good luck this year!

Hi Runnerbabe,

Here is something i got off of webMD.com..."There are two kinds of Raynaud's phenomenon. Primary Raynaud's, also known as Raynaud's disease, occurs by itself and is the most common form. Secondary Raynaud's, also called Raynaud's syndrome, occurs as part of another disease and usually begins after age 35".

So, if you got it after before age 35, it's something that you just have that is probably not a sign of any other problem...but if you got it after age 35, it's possible that you have some other condition that is associated with this.

now, what if you get it at age 36? (like i did), you wonder which it is. I was tested for several autoimmune markers that came out negative except for the ANA, which is not a good indicator of anything specific and could be positive simply due to having autoimmune hypothyroidism.

I know that raynauds occurs more often in people with hypothyroidism than in the general population. When i first came down with both of these, i found published case studies where people with raynaud's, who were subsequently diaganosed and treated for hypothyroidism had their raynauds go away. I was so sure this would work for me but it didn't.

Then i found an article (randomized study) that found high doses of t3 (in normal people) got rid of their raynauds. so i asked my doc to supplement my levoxyl with t3...this didn't work either.

But, i always wondered, if my TSH were held steady at around 1.00 for any length of time if i could get results from this. even when treated, my lowest recorded TSH is about 2.9.

a side note - rei has finally come out with a windstop mitten, with mini heaters, i can finally deal with winter mornings < 40 and these are okay alone from about 50-60 degrees (when all my friends have to take their gloves off for speed work cause their hands get too hot).

btw...does your raynauds get worse when you are running hard?

Thanks for the clarification. I did start experiencing my symptoms after age 35 and the tests done for other autoimmune markers were negative (though I'd have to check the ANA.) So far my symptoms are pretty mild but occasionally I have a bad episode- painful!!!!! Also, I don't have problems with it being worse when I run hard, and often it sets in after I'm done and out of the cold! Weird.

Thyroid problems = just one of the many funky autoimmune problems that endurance athletes commonly have.

Your immune systems is outta wack and attacking your body !

lupner wrote:

Thyroid problems = just one of the many funky autoimmune problems that endurance athletes commonly have.

Your immune systems is outta wack and attacking your body !

WRONG ANSWER!!!

I think because people post on this list about autoimmune disorders, it's easy to think that they are more common in runners than in the general population. But, i don't think there is any evidence to support this. It's kind of like thinking that the top disease in women is breast cancer. In reality, it's heart disease but breast cancer gets so much more press time.

Hi

sorry to drag up an old post, but I've recently been diagnosed with this and my running is completely destroyed. Running is literally my life so I'm determined to sort it out and get back to normal. There is so little information about hypothyroidism's effect on running, I'm just so glad I found this thread. More info here than I've found in months looking everywhere else. Thanks so much to the people who've posted and shared the info they have - gives me hope!

I've got two questions:

1) Did anyone else find they're heart was racing and then skipping beats when they first started taking levothryroxine? Particularly at when running and at night, making it difficult to sleep?

2) Those runner's who've had success with taking additional T3 - did you find it best to get your Synthroid levels sorted first and then add a small dose of T3 to that, or do you think its better to add a small dose of T3 right from the start?

Any replies greatly received - I'm going out of my mind with this.

I remember this thread. It takes me back.....

Well, moving on. I am not sure if it was stated before but one thing I noticed is that you should never take your medicine the morning of a race. When I was in college I had just started on Synthroid and things were looking up for me. I was taking it in the morning and working out in the afternoon and getting into really good shape. The only downfall was that when I raced in the morinings I was horrible. I felt horrible, my heart raced, and I was getting destroyed by people that should not have ever been beating me.

I then talked to another runner with the condition who told me that he never took his meds the morning of a race. He would either skip that day or take it in the afternoon. The next race I tried it out and Bingo I ran fast and up to my training at that point.

Since then I have been up and down, (as is sadly the case with this condition) but I have never raced that poorly again.

Now days I am working out in the morning so I run and then take my meds before I hit the shower. If I race, I take it not long after the race. This is limiting though because you can't eat much for an hour or two after taking the pill as it says in the directions. To feel better and race better though, I am ok with it.

Thanks for that info - when I'm back up to being able to race again that's definitely something I'm going to try. I train on an evening and races are always in the morning, so its something I'll definitely keep to mind. Nothing more frustrating than putting the training in and not getting the results you know you should have!

Do you take any t3 with your meds?

I sure don't. The synthoroid brought me back to where I was before so I never really asked questions. My doc was a runner too and I trusted his judgement.

night wrote:

Hi

sorry to drag up an old post, but I've recently been diagnosed with this and my running is completely destroyed.

I've got two questions:

1) Did anyone else find they're heart was racing and then skipping beats when they first started taking levothryroxine? Particularly at when running and at night, making it difficult to sleep?

2) Those runner's who've had success with taking additional T3 - did you find it best to get your Synthroid levels sorted first and then add a small dose of T3 to that, or do you think its better to add a small dose of T3 right from the start?

1) I played around with when to take my meds and came to the conclusion that the middle of the night worked best for me. sounds strange but there are very few night where i don't have to get up in the middle of the night to pee. so, i take it then. it's usually at around 2 or 3 am and then i fall back to sleep and never seem to have a problem. i tried the night time thing but you really want to take them on an empty stomach for maximum absorption. i haven't experienced the heart racing.

i found published case studies where people with raynaud's, who were subsequently diaganosed and treated for hypothyroidism had their raynauds go away. I was so sure this would work for me but it didn't.

2) I have raynauds and i found an article (randomized study) that found high doses of t3 (in normal people) got rid of their raynauds. so i asked my doc to supplement my levoxyl with t3...this didn't work so i asked the doc to up my levoxyl levels and go off of the t3...a few months later i crashed. you know what i mean?? tired, always minor injuries, couldn't do the training i wanted. so i went back on the t3 and after about 6 months starting coming back. i followed kriegers advice (another poster on the thread) on getting the TSH to 1.0 and that seems to work for me.

What i learned from this is to not mess with your meds. i basically did an experienment on my self with n=1. my doc was open to me trying this stuff since i did a good amount of research before i went in there. but i'm not sure that it's the t3 that helped as much as it as getting the TSH close to 1.00 because when i dropped the t3, i got the levoxyl dose uppped, but i gotta wonder if it wasn't upped enough which is why i fell apart. once i got back on the t3 things started falling into place. my advisce is to stick with just the synthoid/levoxyl first and getting stable but ask the doc to get a free t3 and total t3 test and see where you land on the scale.

based on my ups and downs in dosages and how i felt, i think you are better getting stable enough where you never have to decrease your dose. my experience with the decrease was that after about 2 months, i was probably hypo again but of couse, i attributed it to training like i did for the years before i was diagnosed! grrrh.

so you're better off being a stable dose, telling the doc that you want to be close to 1.00 and upping the dose bit by bit till you are there. but, it seems to take about 6-8 weeks before are stable on the new dose.

glad you posted so this gets to the top of the list and maybe someone more knowledgble will post. i'm waiting for some reseach to come out that validates k. krieger's doc's advise so that we can all hand this to our general practicioners and say "i want to be at 1.00".

Thanks for the detailed reply! If I find any other new info or research related to running I'll post it here, and I'll post any meds success too. For those interested in figures: current TSH is 7.04 and I've just started on 50mcg levothyroxine over the last few weeks, but don't feel well at all. Running has been pretty much impossible over the last 4 months which is what sent me to the doctor in the first place.

At first I thought I'd just overtrained/caught a virus, so I thought I'd just stop running for a week or two to give my body chance to recover. When the weeks became months and I couldn't drag myself out of bed in a morning, and every day felt like I'd been running back to back marathons, I knew I was in trouble. Took another 2 months to diagnose though, and in the meantime I also lost all concentration, had to cut my working hours right back, lost my short-term memory and got really depressed. Thought I must be having some kind of breakdown to be honest.

Just a few weeks taking levothyroxine has returned concentration/memory/mood pretty much back to normal, but the exhaustion and muscle weakness hasn't been so quick to shift and my running is totally down the toilet. Feel really unwell generally, but reading the previous posts makes me realise that it can take a while and patience is needed! From reading stuff posted on the internet I also realise I'm really lucky to have had it diagnosed relatively quickly. I wouldn't wish those months of falling apart and not knowing why on anyone.

7.04 TSH? That is actually not too far off normal. When I was finally diagnosed my level was 43.8.

Did you have trouble getting your doc to prescribe the meds for you? While 7.04 is above normal, it is just slightly above normal.

I bet you come back just fine, but it will not be a major change in your metabolism.

Am I right on this? I'm thinking most people who have a problem with this have a major difference in TSH.

43???are you sure that wasnt your T3 Uptake??

nope...my original tsh was 7.99. but the result besides the physical symptoms was that my LDL and total cholesterol were above normal. 1 year of treatment brought them back to normal. it also caused some abnomal values on the CBC.

i found that after a few weeks of treatment, the day to day stuff started feeling better - things that i raelly didn't realize were that wrong to begin with. for example, i didn't realize that i shouldn't have been out of breath walking up stairs - stuff like that. but, it took a good 6-months to get the running feeling somewhat normal again.

here are a couple of interesting articles:

the first one talks about how exercise can unmask problems that might not be found in sedentary people.

http://www.physsportsmed.com/issues/1998/03mar/eichner.htm

the second one is about hypothyroidism that was discovered in a triathlete only after he kept getting tendonitis. it makes an argument that athletes without a history of cardiovascular disease should actually be started on a dose of 1.00 of sythoid.

http://www.physsportsmed.com/issues/1997/01jan/knopp.htm

Thanks for the great links Noname - really interesting studies. 6 months sure sounds like a long time to wait for normal running to resume. Was that 6 months after you got your synthroid dosage upped to 1.00? How long did it take to get your TSH down near to 1 from 7.99?

night wrote:

Thanks for the great links Noname - really interesting studies. 6 months sure sounds like a long time to wait for normal running to resume. Was that 6 months after you got your synthroid dosage upped to 1.00? How long did it take to get your TSH down near to 1 from 7.99?

my doc started me off on a very conservative .025 dose of levoxyl and this was in may of 2002. in july of 02 my tsh was at 3.35. i asked my doc if i could up the dose since i knew that the normal range was .33-5.5 and that article i linked above suggeseted that a 1.0 dose would be fine for an athlete with no previous condition. after doing some research, i asked a peds endocrinologist doc i know if he'd be willing to prescribe me some t3 to try and get rid of my raynauds - a condition that is more prevelent in people with hypothroidism. i showed him the articles and the cases studies where people with raynaud's who were subsequently diagnosed as hypothyroid had their raynauds go away with treatment. he agreed so i started adding a small amount of T3 with my levoxyl. that was nov 02. in jan 03, things started feeling better and i was able to train and get back to times that more resembled where i was 5-6 years earlier.

i'm thinking that the length of time to normal running depends on how long you went without diagnosis. i suspect i went from 1998-2002 without knowing what the problem was. i had the best running year of my life in 1997. but, starting in middle of 1998, i started getting all of these weird injuries when i'd been a fairly injury-free runner for the pervious 9 years. i had the PF and shin splints but nothing that knocked me down. starting in 1998, i pulled hamstrings multiple times, my low back, piriformis, and hips hurt all the time, i had what i finally called "weird knee thing" a couple times where a PT thought that my quad mucsle had gotten weak at a specific spot and it cause my knee to go off track. i kept getting colds and i was wearing thermal underwear under my jeans when it was below 60. i also would try and train like i used to but one speed workout left me thrashed for a week. but, everyone including myself convinced me that it was all due to nomal aging (i was in my mid 30s), running for 16+ years, and it was low body fat that caused me to be cold all the time.

my point is that with hypothroidism comes muscle break down aka rhabdomylosis (sp??) because your thyroid hormones stimulate recovery. when muscles break down, you get injured. i think that if i had a clue back in 1998 as to what the problem was, and got treated then, i would have come back much more quickly...but after 4+ years, it took a lot longer to get back on track. i also think that if i had started on a higher dose to being with, i would have come back faster.

i'm just waiting for the study to come out that says that endurance athletes need to have a tsh of 1.0. my sister also has hypo and has been trying to train for a marathon for 5 years now and keeps getting hurt and sick. her tsh is 2.9 and it would be nice for people like her her to have something to show to her doc that says that she's being under treated.

okay - just noticed i was a bit long winded...but since hypothyroidism seems to the be hot topic on letsrun these days..i won't edit.

Thanks for the info. Sorry for asking personal details but its just your TSH was similar to mine when you were diagnosed, so I was interested to know how long I can expect to be down for. Getting my bloods checked next week and from reading around I know what to look for this time. The more I read about it the more determined I am that I'm going to get it completely sorted so I can have my life back. Not too much to ask is it?!!