Aa
Doctors dismissive of suggestion of subclinical hypothyroidism/Hashimotos?
I am 37 years old, female. I discovered thyroid nodules in the mirror recently, large enough to see. Since then, I learned I have a family history of thyroid problems (grandmother had thyroid removed at ~40), my aunt also has nodules. I went to PCP and was diagnosed by palpation with nontoxic multinodular goiter.
Blood test results:
TSH 3.44 (0.450-4.500)
FT4 1.44 (0.82-1.77)
FT3 3.2 (2.0-4.4)
And an ultrasound (summary):
Right lobe: 6x2.4x2.3 cm. Heterogeneous with background diffuse nodularity. There are isoechoic nodules measuring up to 1.9cm. There is also a hypoechoic solid nodule posteriorly measuring 1.4cm.
Left lobe: 5.8x3.1x3 cm. Background diffuse nodularity. Solid isoechoic 2.2cm nodule with some internal vascularity, smaller nodule 1.4cm.
I saw an ENT for the first time today, and am awaiting scheduling for a fine needle biopsy (this is what I expected). I also asked them about hypothyroidism because a.) I have a few symptoms including periods of fatigue, weight gain (I've lost it now, but it happened), heavy/long periods, dry hair and skin, and I am cold all the time for probably last 20 years and b.) The ultrasound results state: enlarged thyroid and diffuse nodularity which from what I can tell is associated with Hashimoto's or an inflammation state (and not normal thyroid tissue).
The resident who saw me first basically said that my thyroid hormone levels are fine, that she's cold too, and I'm skinny so that's why I'm cold, and lots of things can cause those symptoms, and I don't have a family history of Hashimoto's and that they would know it if I had major symptoms. She said it's probably not Hashimoto's and even if it is, they wouldn't treat it because it's below their TSH threshold. I asked if the hormone could be fluctuating or has periods of hypo/thyroid growth, and got a "let's just focus on the nodules first" response, and was told to stop reading things on the internet. I agree the nodules need to be evaluated for cancer, but I'd also like to know the reason why my thyroid is so big in the first place (and if a thyroid issue is causing some of my symptoms).
The ENT doctor reluctantly wrote me an order to get the antibodies tested, probably for my peace of mind, but also told me that if it is Hashimoto's the doctor/pathologist doing the FNB will be able to tell from the tissue samples. I need to figure out where to go to get the blood test done or if my PCP can do it, and left the office feeling pretty frustrated with how they dismissed my concerns.
I just want to understand what is going on with my thyroid - if it is thyroiditis/Hashimoto's there may be things that I'm doing or eating that are negatively affecting the disease and causing nodule growth. I like to run, almost every day, and will often do a 2.5hr + run once a week, sometimes another 2hr run the same week - I've seen some websites suggesting extreme endurance (marathon running) negatively influencing thyroid function, especially in people with a genetic predisposition. Doctor and resident both said basically keep doing what I'm doing, but I have a feeling I may be destroying my thyroid with the long runs and not enough recovery time.
Has anyone else received a lot of pushback for trying to figure out what is going on or doctors being dismissive of their symptoms? I'm trying to figure out if I should just have the antibody screen done soon or wait until I get the results from the FNB - I'm feeling pretty negative about the whole thing right now.
Blood test results:
TSH 3.44 (0.450-4.500)
FT4 1.44 (0.82-1.77)
FT3 3.2 (2.0-4.4)
And an ultrasound (summary):
Right lobe: 6x2.4x2.3 cm. Heterogeneous with background diffuse nodularity. There are isoechoic nodules measuring up to 1.9cm. There is also a hypoechoic solid nodule posteriorly measuring 1.4cm.
Left lobe: 5.8x3.1x3 cm. Background diffuse nodularity. Solid isoechoic 2.2cm nodule with some internal vascularity, smaller nodule 1.4cm.
I saw an ENT for the first time today, and am awaiting scheduling for a fine needle biopsy (this is what I expected). I also asked them about hypothyroidism because a.) I have a few symptoms including periods of fatigue, weight gain (I've lost it now, but it happened), heavy/long periods, dry hair and skin, and I am cold all the time for probably last 20 years and b.) The ultrasound results state: enlarged thyroid and diffuse nodularity which from what I can tell is associated with Hashimoto's or an inflammation state (and not normal thyroid tissue).
The resident who saw me first basically said that my thyroid hormone levels are fine, that she's cold too, and I'm skinny so that's why I'm cold, and lots of things can cause those symptoms, and I don't have a family history of Hashimoto's and that they would know it if I had major symptoms. She said it's probably not Hashimoto's and even if it is, they wouldn't treat it because it's below their TSH threshold. I asked if the hormone could be fluctuating or has periods of hypo/thyroid growth, and got a "let's just focus on the nodules first" response, and was told to stop reading things on the internet. I agree the nodules need to be evaluated for cancer, but I'd also like to know the reason why my thyroid is so big in the first place (and if a thyroid issue is causing some of my symptoms).
The ENT doctor reluctantly wrote me an order to get the antibodies tested, probably for my peace of mind, but also told me that if it is Hashimoto's the doctor/pathologist doing the FNB will be able to tell from the tissue samples. I need to figure out where to go to get the blood test done or if my PCP can do it, and left the office feeling pretty frustrated with how they dismissed my concerns.
I just want to understand what is going on with my thyroid - if it is thyroiditis/Hashimoto's there may be things that I'm doing or eating that are negatively affecting the disease and causing nodule growth. I like to run, almost every day, and will often do a 2.5hr + run once a week, sometimes another 2hr run the same week - I've seen some websites suggesting extreme endurance (marathon running) negatively influencing thyroid function, especially in people with a genetic predisposition. Doctor and resident both said basically keep doing what I'm doing, but I have a feeling I may be destroying my thyroid with the long runs and not enough recovery time.
Has anyone else received a lot of pushback for trying to figure out what is going on or doctors being dismissive of their symptoms? I'm trying to figure out if I should just have the antibody screen done soon or wait until I get the results from the FNB - I'm feeling pretty negative about the whole thing right now.
Well at least your moving forward.
The surgery, what is being done? Is it complete thyroid removal. In which case you will be totally dependent and not just a "trial" of thyroid meds in order to feel well.
Even without the removal of thyroid, Hashi's will sooner or later totally "kill" the thyroid production and you will ultimately be totally relient upon thyroid meds anyhow. So the end result is probably the same.
Hashi's acts differently and at different speeds for everyone. the immune reaction and antibodies somewhat have a mind of their own.
As far as the exercise, I also don't think that it "causes" the thyroid gland issues. I think it could contribute to cellular issues with getting enough thyroid. Cortisol plays a role and messes up thyroid, and the long distance running could have shot up Cortisol and is maybe why you have had Hypo symptoms, even though you had what appeared ample thyroid hormone in the blood. But if the hormone doesn't get into the cell. It is no better than a sprots car that is full of gas, but the gas line to the engine partially or completely plugged. It doesn't matter how much is in the tank if it isn't getting to the engine. Same with thyroid in the blood, if it isn't getting into the cell it is essentially worthless.
Keep us posted on progress.
Remember that if you are prescribed only a T4 medication such as synthroid or Levvo etc, it takes 6 WEEKS to build up and stabilize in the bloodstream. So do NOT expect immediate results. do NOT expect the first dose to be the optimized dose. if anything, don't be surprised if you actually feel WORSE for a time. As your body adjusts to getting more thyroid and settles out over time.
Thyroid and all hormone replacement is pretty tricky. Low and slow is the way to go. it can be frustrating but starting low doses and small increments and waiting weeks in between is the name of the game and is the best approach. It absolutely IS frustrating however, because we all want to feel well ASAP. But with hormones it is the slow and steady wins the race.
Things to do:
1) absolutely DO keep a medical diary, journal log, whatever you call it. You MUST keep track at a minimum of these things A) the blood lab results B) The dosage and medications you are on at the time C) the symptoms you are feeling at the time of the blood draw.Keeping the above log will provide "proof" over time of how you felt with DIRECT correlation with blood labs and dosages. This is particularly invaluable if you ever have to change doctors for any reason. So that years down the road and you have a dosage that works, another Dr. won't freak out at the TSH level or some such thing and yank you off your meds. You will have a log "proving" what that would do to you.
2) Do be your own strongest advocate. You can see from this thread post how standing up for what you thought was right paid off! Don't stop. the medical industry is so "by the numbers" and afraid of being sued that they don't think. They simply look at the lab result and unless it is way out of line they don't do a t hing. if it is out of line they only do enough to get it back into the lawyer proof safe zone and nothing more. Regardless of whether or not you are well. They only do what the lawyers and insurance companies allow them do do. Now not EVERY doctor is like that. however it seems to be more and more the normal situation and the good doctors are harder and harder to find. But they do exist. Regardless, you HAVE to look out for yourself.
Things to NOT do:
1) do NOT take your medication, especially if you have any T3 medication or Natural desiccated thyroid (NDT) such as Armour before you had you blood drawn. Wait until AFTER you have blood drawn to take your thyroid medications. I always try to make sure I set up the lab appointment early in the morning.
2) Do not freak out about diet. There is to my knowledge little to support that diet does or has any huge effects. Sure Coniferous veggies are bad for a goiter, but really how much cabbage do you eat every day? Also gluten free etc you will read a ton about with regard to Hashi's. Again, I'm not convinced that gluten necessarily affects the antibody count. Maybe it does have an effect, but at best I see this as moderating the antibodies, it won't stop Hashi's. It MAY slow the progress or how fast it attacks the thyroid. But it won't stop it. If you feel better on gluten free diet, well it may be because you are gluten intolerant and that would be a good reason to continue gluten free. But if you g gluten free for several months and really don't feel any different. Well you can judge whether or not you want to continue gluten free.
The surgery, what is being done? Is it complete thyroid removal. In which case you will be totally dependent and not just a "trial" of thyroid meds in order to feel well.
Even without the removal of thyroid, Hashi's will sooner or later totally "kill" the thyroid production and you will ultimately be totally relient upon thyroid meds anyhow. So the end result is probably the same.
Hashi's acts differently and at different speeds for everyone. the immune reaction and antibodies somewhat have a mind of their own.
As far as the exercise, I also don't think that it "causes" the thyroid gland issues. I think it could contribute to cellular issues with getting enough thyroid. Cortisol plays a role and messes up thyroid, and the long distance running could have shot up Cortisol and is maybe why you have had Hypo symptoms, even though you had what appeared ample thyroid hormone in the blood. But if the hormone doesn't get into the cell. It is no better than a sprots car that is full of gas, but the gas line to the engine partially or completely plugged. It doesn't matter how much is in the tank if it isn't getting to the engine. Same with thyroid in the blood, if it isn't getting into the cell it is essentially worthless.
Keep us posted on progress.
Remember that if you are prescribed only a T4 medication such as synthroid or Levvo etc, it takes 6 WEEKS to build up and stabilize in the bloodstream. So do NOT expect immediate results. do NOT expect the first dose to be the optimized dose. if anything, don't be surprised if you actually feel WORSE for a time. As your body adjusts to getting more thyroid and settles out over time.
Thyroid and all hormone replacement is pretty tricky. Low and slow is the way to go. it can be frustrating but starting low doses and small increments and waiting weeks in between is the name of the game and is the best approach. It absolutely IS frustrating however, because we all want to feel well ASAP. But with hormones it is the slow and steady wins the race.
Things to do:
1) absolutely DO keep a medical diary, journal log, whatever you call it. You MUST keep track at a minimum of these things A) the blood lab results B) The dosage and medications you are on at the time C) the symptoms you are feeling at the time of the blood draw.Keeping the above log will provide "proof" over time of how you felt with DIRECT correlation with blood labs and dosages. This is particularly invaluable if you ever have to change doctors for any reason. So that years down the road and you have a dosage that works, another Dr. won't freak out at the TSH level or some such thing and yank you off your meds. You will have a log "proving" what that would do to you.
2) Do be your own strongest advocate. You can see from this thread post how standing up for what you thought was right paid off! Don't stop. the medical industry is so "by the numbers" and afraid of being sued that they don't think. They simply look at the lab result and unless it is way out of line they don't do a t hing. if it is out of line they only do enough to get it back into the lawyer proof safe zone and nothing more. Regardless of whether or not you are well. They only do what the lawyers and insurance companies allow them do do. Now not EVERY doctor is like that. however it seems to be more and more the normal situation and the good doctors are harder and harder to find. But they do exist. Regardless, you HAVE to look out for yourself.
Things to NOT do:
1) do NOT take your medication, especially if you have any T3 medication or Natural desiccated thyroid (NDT) such as Armour before you had you blood drawn. Wait until AFTER you have blood drawn to take your thyroid medications. I always try to make sure I set up the lab appointment early in the morning.
2) Do not freak out about diet. There is to my knowledge little to support that diet does or has any huge effects. Sure Coniferous veggies are bad for a goiter, but really how much cabbage do you eat every day? Also gluten free etc you will read a ton about with regard to Hashi's. Again, I'm not convinced that gluten necessarily affects the antibody count. Maybe it does have an effect, but at best I see this as moderating the antibodies, it won't stop Hashi's. It MAY slow the progress or how fast it attacks the thyroid. But it won't stop it. If you feel better on gluten free diet, well it may be because you are gluten intolerant and that would be a good reason to continue gluten free. But if you g gluten free for several months and really don't feel any different. Well you can judge whether or not you want to continue gluten free.
4 Comments
flyingfool,
Thank you so much for your comment! I greatly appreciate the advice because it does look like I will need thyroid hormone in the near future.
I do not know if my ENT wants to do a total thyroidectomy or just a lobectomy for my suspicious nodule - if I am going to have to get the other half removed eventually because my thyroid is sick, I think I would rather have it done in one surgery than two (just my thoughts/not super excited about surgery in the first place). I am currently looking into a second opinion to make sure surgery is the best option (odds are high that my nodule is not cancerous, but if I can't eliminate the 25-30% risk then I still definitely want the surgery). I have some time to consider all the options which is a good thing.
I feel so much better when I exercise/run - in fact if I don't go running for 2-3 days I get moody and anxious - I think maybe my running has actually been masking some hypo symptoms for a very long time (since 2001-ish?). I think I will cut back on the extremely long runs until at least I start hormone whether that's before or after my surgery because it's highly likely my very long runs do impair uptake of hormone into the cells. I took a two week break from running end of March/beginning of April when I was worried all my thyroid issues were due to running - and my anxiety was the highest its been in 4 years (I'm currently taking low-dose Zoloft because I was feeling so anxious about this). I'm back to running (4-5 times per week, nothing over 90 minutes and only that long once a week), and I'm doing so much better - it could be the Zoloft working but I think running is my best anti-anxiety medication personally.
I love the idea of keeping a medical journal - I already keep a "bullet journal" where I've started to record my medical appointments/test results, but I will start a dedicated medical journal to keep track of thyroid hormone levels and symptoms.
Before I saw you comment I have already looked at a lot of the Hashimoto's diet suggestions and boy are there a lot of suggestions out there of foods to eliminate. I eat a bagel for lunch 90% of the time, so if I do go gluten-free that is going to be a big diet change for me (bagel is one of my favorite foods). I think I have decided that I can eliminate iodized salt and soy and soy-products and at least reduce my gluten intake in the short term. A lot of the diet recommendations are to reduce bad cholesterol which can cause hypertension, increase risk of heart problems, and cause "leaky gut" - I'm not sure what leaky gut is, but I've been mammal protein free since 1996 (16) , and feel really crappy/have serious digestive problems after eating any sort of fried foods like French fries or fried chicken and try to avoid saturated fats for this reason - maybe that's an indication that I do have leaky gut?? Anyway, I'm with you - I don't want to do a total diet overhaul, but I'm willing to make some diet changes for at least until my thyroid is gone or I start to get treatment. I will still eat vegetables because I don't eat that much cabbage to begin with and it appears to be ok if eaten in moderation ( and I don't really like broccoli or Brussel sprouts but will occasionally have a little broccoli, I can easily "eliminate" Brussel sprouts from my diet forever).
Again thank you so much for your helpful comment. I am very new to knowing I have thyroid problem and I realize it takes a while to get the hormone dosage figured out. At least now I know there is a reason why I've had all those symptoms for so long and can hopefully get some of them to go away in the long term.
Thank you so much for your comment! I greatly appreciate the advice because it does look like I will need thyroid hormone in the near future.
I do not know if my ENT wants to do a total thyroidectomy or just a lobectomy for my suspicious nodule - if I am going to have to get the other half removed eventually because my thyroid is sick, I think I would rather have it done in one surgery than two (just my thoughts/not super excited about surgery in the first place). I am currently looking into a second opinion to make sure surgery is the best option (odds are high that my nodule is not cancerous, but if I can't eliminate the 25-30% risk then I still definitely want the surgery). I have some time to consider all the options which is a good thing.
I feel so much better when I exercise/run - in fact if I don't go running for 2-3 days I get moody and anxious - I think maybe my running has actually been masking some hypo symptoms for a very long time (since 2001-ish?). I think I will cut back on the extremely long runs until at least I start hormone whether that's before or after my surgery because it's highly likely my very long runs do impair uptake of hormone into the cells. I took a two week break from running end of March/beginning of April when I was worried all my thyroid issues were due to running - and my anxiety was the highest its been in 4 years (I'm currently taking low-dose Zoloft because I was feeling so anxious about this). I'm back to running (4-5 times per week, nothing over 90 minutes and only that long once a week), and I'm doing so much better - it could be the Zoloft working but I think running is my best anti-anxiety medication personally.
I love the idea of keeping a medical journal - I already keep a "bullet journal" where I've started to record my medical appointments/test results, but I will start a dedicated medical journal to keep track of thyroid hormone levels and symptoms.
Before I saw you comment I have already looked at a lot of the Hashimoto's diet suggestions and boy are there a lot of suggestions out there of foods to eliminate. I eat a bagel for lunch 90% of the time, so if I do go gluten-free that is going to be a big diet change for me (bagel is one of my favorite foods). I think I have decided that I can eliminate iodized salt and soy and soy-products and at least reduce my gluten intake in the short term. A lot of the diet recommendations are to reduce bad cholesterol which can cause hypertension, increase risk of heart problems, and cause "leaky gut" - I'm not sure what leaky gut is, but I've been mammal protein free since 1996 (16) , and feel really crappy/have serious digestive problems after eating any sort of fried foods like French fries or fried chicken and try to avoid saturated fats for this reason - maybe that's an indication that I do have leaky gut?? Anyway, I'm with you - I don't want to do a total diet overhaul, but I'm willing to make some diet changes for at least until my thyroid is gone or I start to get treatment. I will still eat vegetables because I don't eat that much cabbage to begin with and it appears to be ok if eaten in moderation ( and I don't really like broccoli or Brussel sprouts but will occasionally have a little broccoli, I can easily "eliminate" Brussel sprouts from my diet forever).
Again thank you so much for your helpful comment. I am very new to knowing I have thyroid problem and I realize it takes a while to get the hormone dosage figured out. At least now I know there is a reason why I've had all those symptoms for so long and can hopefully get some of them to go away in the long term.
Update:
Finally I have my antibody numbers (they were never sent, but I met with my ENT for pre-op appointment and asked for them).
Thyroglobulin antibodies: ranges: 1.10 positive. Mine is 7.98 H (out of range)
Thyroid peroxidase antibodies: ranges: 250 positive. Mine is >1000 H (out of range), so apparently it is off the charts!
I do not know what the H means.
I also found out today that my doctor just wants to remove the lobe with the suspicious nodule. Despite having hypothyroidism symptoms and an enlarged thyroid with lots of nodules, removing half the thyroid and not taking any thyroid hormone medication is the right course of action for me. I think that I will wait until post-op and see if I can get my PCP to help address my hypothyroidism symptoms.
I'm ok with just doing the lobectomy since risk of complications is much lower and recovery will hopefully be faster, I just hope I can get my Hashi's and hypo symptoms sorted. I think my running/exercise regime actually helps keep a lot of the hypo symptoms suppressed so I can deal with my mild hypo symptoms for a little bit longer I guess. And now things are moving forward I think I am in a much less anxious position than when I didn't know what's going on.
On the very good side of things, I've lucked out in finding a doctor who performs thyroid surgery weekly/multiple times a week, knows to look for central compartment lymph nodes (if it is cancer), and has a lower complication rate of laryngeal nerve damage, etc. than the national average which is good. Also, surgery for the lobectomy usually doesn't require overnight hospital stay, just 2.5 hr of observation afterwards, so hopefully all will go well!
Finally I have my antibody numbers (they were never sent, but I met with my ENT for pre-op appointment and asked for them).
Thyroglobulin antibodies: ranges: 1.10 positive. Mine is 7.98 H (out of range)
Thyroid peroxidase antibodies: ranges: 250 positive. Mine is >1000 H (out of range), so apparently it is off the charts!
I do not know what the H means.
I also found out today that my doctor just wants to remove the lobe with the suspicious nodule. Despite having hypothyroidism symptoms and an enlarged thyroid with lots of nodules, removing half the thyroid and not taking any thyroid hormone medication is the right course of action for me. I think that I will wait until post-op and see if I can get my PCP to help address my hypothyroidism symptoms.
I'm ok with just doing the lobectomy since risk of complications is much lower and recovery will hopefully be faster, I just hope I can get my Hashi's and hypo symptoms sorted. I think my running/exercise regime actually helps keep a lot of the hypo symptoms suppressed so I can deal with my mild hypo symptoms for a little bit longer I guess. And now things are moving forward I think I am in a much less anxious position than when I didn't know what's going on.
On the very good side of things, I've lucked out in finding a doctor who performs thyroid surgery weekly/multiple times a week, knows to look for central compartment lymph nodes (if it is cancer), and has a lower complication rate of laryngeal nerve damage, etc. than the national average which is good. Also, surgery for the lobectomy usually doesn't require overnight hospital stay, just 2.5 hr of observation afterwards, so hopefully all will go well!
Whoops, somehow I deleted some of the ranges...they were there before! Should read:
Thyroglobulin antibodies: ranges: 1.10 positive. Mine is 7.98 H (out of range)
Thyroid peroxidase antibodies: ranges: 250 positive. Mine is >1000 H (out of range), so apparently it is off the charts!
I do not know what the H means.
Thyroglobulin antibodies: ranges: 1.10 positive. Mine is 7.98 H (out of range)
Thyroid peroxidase antibodies: ranges: 250 positive. Mine is >1000 H (out of range), so apparently it is off the charts!
I do not know what the H means.
Ok, third times the charm? I think the less than and greater than sign screwed things up. Will try again.
Thyroglobulin antibodies: ranges: less than 0.90 negative, 0.91-1.09 equivocal, greater than 1.10 positive. Mine is 7.98 H (out of range)
Thyroid peroxidase antibodies: ranges: less than or equal to 250 negative, greater than 250 positive. Mine is >1000 H (out of range), so apparently it is off the charts!
I do not know what the H means.
Thyroglobulin antibodies: ranges: less than 0.90 negative, 0.91-1.09 equivocal, greater than 1.10 positive. Mine is 7.98 H (out of range)
Thyroid peroxidase antibodies: ranges: less than or equal to 250 negative, greater than 250 positive. Mine is >1000 H (out of range), so apparently it is off the charts!
I do not know what the H means.
Update #2.
I found out today that I do have Hashimoto's thyroiditis. (I will post the actual antibody numbers as a comment below when I have them, apparently they are being mailed to me.)
I also have a suspicious nodule that may mean I need surgery (I am considering other options - my ENT has already scheduled me for surgery but I have some time to get a second opinion), but at least I know now that I have Hashimoto's and can consider diet changes and other steps to address the Hashimoto's.
When the resident at my ENT's office kind of laughed off my Hashimoto's/hypothyroid symptoms and told me that despite my multinodular goiter that I was perfectly fine and just need to investigate my nodules, I thought I was being paranoid/making it all up in my head. It's nice to finally start to have some answers about what is going on.
Also - I don't think my long endurance runs "caused" Hashimoto's or my multinodular goiter (they may have exacerbated them, who knows?), which means I can slowly get back in to going for long runs but maybe cut back on how many I do per week (to one long run, several shorter runs) for now.
I found out today that I do have Hashimoto's thyroiditis. (I will post the actual antibody numbers as a comment below when I have them, apparently they are being mailed to me.)
I also have a suspicious nodule that may mean I need surgery (I am considering other options - my ENT has already scheduled me for surgery but I have some time to get a second opinion), but at least I know now that I have Hashimoto's and can consider diet changes and other steps to address the Hashimoto's.
When the resident at my ENT's office kind of laughed off my Hashimoto's/hypothyroid symptoms and told me that despite my multinodular goiter that I was perfectly fine and just need to investigate my nodules, I thought I was being paranoid/making it all up in my head. It's nice to finally start to have some answers about what is going on.
Also - I don't think my long endurance runs "caused" Hashimoto's or my multinodular goiter (they may have exacerbated them, who knows?), which means I can slowly get back in to going for long runs but maybe cut back on how many I do per week (to one long run, several shorter runs) for now.
Update:
I discussed my concerns with my nurse practitioner PCP - I am going to wait until after the biopsies to make sure everything is ok, then we are going to do the antibody test.
If it is Hashi's, she's willing to do a trial of hormone to see if it helps with the symptoms I'm having, which is really great because it sounds like a lot of doctors won't treat unless your TSH is a lot higher than mine. If it's just I've made my thyroid grow larger from long endurance training abuse, I'll have to consider adapting my running in some way to prevent further damage/growth.
Anyway, I am feeling a lot better about the situation now that I have a plan to follow up and someone willing to listen to my symptoms and help me figure out what is going on.
I discussed my concerns with my nurse practitioner PCP - I am going to wait until after the biopsies to make sure everything is ok, then we are going to do the antibody test.
If it is Hashi's, she's willing to do a trial of hormone to see if it helps with the symptoms I'm having, which is really great because it sounds like a lot of doctors won't treat unless your TSH is a lot higher than mine. If it's just I've made my thyroid grow larger from long endurance training abuse, I'll have to consider adapting my running in some way to prevent further damage/growth.
Anyway, I am feeling a lot better about the situation now that I have a plan to follow up and someone willing to listen to my symptoms and help me figure out what is going on.
1 Comments
Great to hear. It is difficult to be treated with "normal" TSH. My TSH was 1.4 to 1.6 for decades until Hashi's arrived. At my diagnosis my TSH was mid 2's. And I felt the difference which is why I pushed for testing. Over 95% of healthy people have a TSH under 2.5. Over 2 is a red flag of thyroid issues. I actually have to halve my thyroid dosage when I go to the gym. Exercise increases endorphins and this improves immune function. But excess endurance training is a cause of oxidative stress. Check out the article - "What thyroid patients should know about Oxidative Stress."
your blood labs for thyroid do look pretty darn good and many people here would kill to have labs like that.
HOWEVER.
One thing to consider is that excessive exercise (Marathon runners and endurance running etc) which you list running frequently for 2.5 hours at a shot might include.
Excessive exercise can lead to the situation where the thyroid resists going into the cells themselves. So despite having sufficient serum blood levels of thyroid, the thyroid hormone is NOT entering the cells so you are still hypo.
That is about the extent that I know about this. I believe it has to do with the enzymes involved and it may take time to re-find the article that I had read years ago about this phenomena. But in your specific case, it may be something to look into further.
Have you had your vitamin D3, Iron and Ferritin levels checked? Ferritin is required for proper metabolizing of thryoid hormone.
Have you checked your basal body temp? This is the temp IMMEDIATELY upon waking even before you get out of bed. For a female it should be 97.9 or better. this is oral under the tounge temp. if below that, it would suggest thryoid deficiency. Most Dr will disregard this simple test, but frankly it is a true measure of your body's furnace. and it is t hyorid that is the fuel for the furnace. If body temps low, none of the hormones and enzymes work properly. We are warm blooded for a reason. and all our body functions are dependant upon the proper body temp and work in a very specific body temp range. If cooler than this range, EVERYTHING will be slowed down and n ot work effectively.
HOWEVER.
One thing to consider is that excessive exercise (Marathon runners and endurance running etc) which you list running frequently for 2.5 hours at a shot might include.
Excessive exercise can lead to the situation where the thyroid resists going into the cells themselves. So despite having sufficient serum blood levels of thyroid, the thyroid hormone is NOT entering the cells so you are still hypo.
That is about the extent that I know about this. I believe it has to do with the enzymes involved and it may take time to re-find the article that I had read years ago about this phenomena. But in your specific case, it may be something to look into further.
Have you had your vitamin D3, Iron and Ferritin levels checked? Ferritin is required for proper metabolizing of thryoid hormone.
Have you checked your basal body temp? This is the temp IMMEDIATELY upon waking even before you get out of bed. For a female it should be 97.9 or better. this is oral under the tounge temp. if below that, it would suggest thryoid deficiency. Most Dr will disregard this simple test, but frankly it is a true measure of your body's furnace. and it is t hyorid that is the fuel for the furnace. If body temps low, none of the hormones and enzymes work properly. We are warm blooded for a reason. and all our body functions are dependant upon the proper body temp and work in a very specific body temp range. If cooler than this range, EVERYTHING will be slowed down and n ot work effectively.
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Thanks flyingfool,
I have not checked temperature or had vitamin D3, Iron, or ferritin levels done, but will look into that.
I just found several articles about thyroid function being disrupted in athletes after especially strenuous/prolonged exercise - I'm wondering if I go through periods (like recovering from long run) where T3 conversion isn't working properly for a period of time, stimulating thyroid growth, and then the levels go back to normal - over a long period of time (I've been running half marathons since 2002, whole marathons or distance for fun since 2012), this could cause my thyroid morphology but might not be Hashimoto's or autoimmune at all.
I have a family history of nodules, so maybe a burst of TSH after prolonged run recovery combined with stress has stimulated growth of both the thyroid and nodules...
I mentioned the endurance exercise to my doctor because I've found articles which mention a lot of elite marathon runners being treated for hypothyroidism -and this is probably the main reason I was looking in to Hashimoto's, because if I am doing something to damage my thyroid, I'd like to know so I can modify my behavior. Both the resident and the ENT said to keep doing what I'm doing, but I'm hesitant to run much more than 1 hour right now until I have a better understanding of what's going on.
I have not checked temperature or had vitamin D3, Iron, or ferritin levels done, but will look into that.
I just found several articles about thyroid function being disrupted in athletes after especially strenuous/prolonged exercise - I'm wondering if I go through periods (like recovering from long run) where T3 conversion isn't working properly for a period of time, stimulating thyroid growth, and then the levels go back to normal - over a long period of time (I've been running half marathons since 2002, whole marathons or distance for fun since 2012), this could cause my thyroid morphology but might not be Hashimoto's or autoimmune at all.
I have a family history of nodules, so maybe a burst of TSH after prolonged run recovery combined with stress has stimulated growth of both the thyroid and nodules...
I mentioned the endurance exercise to my doctor because I've found articles which mention a lot of elite marathon runners being treated for hypothyroidism -and this is probably the main reason I was looking in to Hashimoto's, because if I am doing something to damage my thyroid, I'd like to know so I can modify my behavior. Both the resident and the ENT said to keep doing what I'm doing, but I'm hesitant to run much more than 1 hour right now until I have a better understanding of what's going on.
My doctor told me I didn't have Hashimoto's thyroiditis so I went to another doctor to request tests showing both antibodies elevated. I went back to the first doctor who had a sour look on her face when I showed her the labs. Did she care about my symptoms? No. Did she prescribe medication? No. Did I have to wait and suffer for 4 years until a doctor would treat me? Sadly yes.
1 Comments
Thanks Red_Star - I have a feeling I have felt hypothyroidism symptoms for several years and just ignored them because I didn't know what thyroid symptoms were, and just thought circumstances (stress, moving to UK then back to US, job difficulties, etc.) were driving my lethargy and other problems. Now I have large nodules and an enlarged thyroid so I think something must be going on, and I felt so frustrated when I got "60-70% of people have nodules" as a response. Not everyone has lots of nodules, some 2cm large that they can see in the mirror. (I know I should be concerned about a cancer diagnosis, but at this point I know either it's cancer and the thyroid comes out, or more likely it's not and we just watch the nodules).
I'm hoping my PCP, who listens to me (even if she has already talked me out of the antibody test once), will help with this once the biopsy results come back...
I know ENTs are more interested in the nodules/cancer side, but I thought I'd ask about Hashi's and thought they'd at least acknowledge it as a possibility based on the ultrasound... I don't think they actually care if it's Hashi's or not, and they said they wouldn't treat it anyway because my TSH is "fine". I just don't want my goiter and nodules to keep growing if there is something I could be doing to prevent it.
I'm hoping my PCP, who listens to me (even if she has already talked me out of the antibody test once), will help with this once the biopsy results come back...
I know ENTs are more interested in the nodules/cancer side, but I thought I'd ask about Hashi's and thought they'd at least acknowledge it as a possibility based on the ultrasound... I don't think they actually care if it's Hashi's or not, and they said they wouldn't treat it anyway because my TSH is "fine". I just don't want my goiter and nodules to keep growing if there is something I could be doing to prevent it.
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