Thryoid Question

[nuttmegs17]

Hi

I am getting so discouraged waiting and honestly becoming scared that I will not know why i feel this way and know HOW to stop this. The loss of control is maddening. anyways...it's been wearing me out...this is a very supportive place and I'm learning a ton....great to have this information as it seems many docs aren't up to snuff...

Sounds like many people here have experienced thyroid issues so i wanted to throw this out there

Did any of you get diagnosed with HYPO or Hashimotos even if you were w/in normal TSH range? I ask b/c i used to have graves (where i went from a small size to gaining 30 pounds within as many days....for me it wasn't a "skinny" disease) but once i got the proper hormone therapy it actually went into remission (took a while but it happened thankfully, spent most of that time in a fog so cant remember specifics). This was over 7 years ago and i have not had to take any hormones since then (despite surpressing thyroid hormone, my weight went back to normal and i almost forgot i ever had a problem!)....now my weight is creeping up despite eating healthier than ever (i train for half and full marathons, ride bikes 22 miles round trip in good weather etc...log calories in a food diary...I know myself well enough to know this isnt normal (I've catalogued my other symptoms elsewhere so I'll spare you)....I'd love to say this is muscle gain but it is clearly not (and if one more of my friends throws out: "have you tried adding weights or intervals to your workouts?" i'll scream, seriously. its insulting that people think i'm to blame for my symptoms....but that's another forum....)

I get tested every year and it's always been within about .05 of each reading (i understand it fluctuates)...now it's shot up a bit - the most i've seen shoot up in a while...however, technically it's still w/in "normal" range so my primary doc doesnt think it's my thyroid. When i pulled out all my past tests, I noticed a definite trend upward - once it went up a degree, it never was down again, each reading is higher and higher....I'm planning on going to an endo to get a full panel done but just curious how common this is....is it possible that the lab "normal" isn't my normal and could be explaining some of this? i have to be my own best advocate so am just trying to get a feel for other situations before i talk to an endo. Even if it's not technically hypo - isnt it worth it to try hormone therapy to get me back to a normal level to see if i feel any better? Anyone have experience with this?

Do many of you have both a thyroid problem and celiac?....if it's one, should i stop it's assuming it's the other (i truly hope it's one as i wont know where else to look to explain all my symptons)....just trying to piece this together

I've been posting a lot around here so thanks for bearing with me. i tend to get a bit anxious. its just that I remember all too well how much an autoimmune disease system can turn your world upside down, and it's scary seeing myself going down the same road. When I had graves i became so isolated b/c no one believed there was anything wrong with me...they thought I was eating too much chocolate! I went from being extremely athletic to barely being able to climb a flight of stairs...my heart kept me up all night and the insomnia made it so i couldn't function during the day....it was terrible and i had to drop out of college and quit work for years. I had virtually no friends (those i had didn't understand so I lost them). my doctor was amazing and fixed me up eventually (Thankfully he realized what was going on) and i had my parents love and support.....with these symptons, I'm already getting similar reactions (like i said above, as if the weight gain is bc i'm lazy or just not trying)

I really like where i am today - great job awesome friends and an incredible husband...i'm so fortunate, i'm just scared I'm about to lose it all again. I am scared I will just get sicker and sicker and not know what is happening.

[eatmeat4good]

Aww Nutmeg! I wish you didn't have to feel so awful. I understand the fear of regressing and losing it all. I have those thoughts too. I don't really have any thyroid answers for you, but I think you are right. One person's level is not the same as another's. I just read a bit about thyroid and it seems that some Dr.'s are now understanding this concept and may be willing to medicate not only by the numbers but according to how the patient feels. I'm hoping that is the case anyway. I have a "normal" TSH but have a swollen thyroid and fatigue that comes and goes but some days controls me.

Can you talk to the Dr. that helped you with the Graves?

CassP will be giving you a reply here in the near future. She has both Hashimoto and Graves. I consider her the thyroid expert. Well, one of them anyway!

I need to get checked for Hashimoto's too. I was hoping to be able to explain what you just did...that levels may be normal but not optimal. I can't see a specialist though.

Start with the full thyroid panel. I will be interested in what happens here. Thyroid is a big issue for several folks here.

Your posts are very well-written. Don't feel like you write too many. You may have anxiety going on, but it isn't unwarranted. You have been through a lot and you don't want things to get out of control. You are being proactive and taking care of yourself.

It is maddening to gain weight and not be able to contol your weight. I was there several times with this Celiac ordeal. I would not be able to exercise though, I was so weak. But all my family kept saying, You need to get out and walk. But I have heart palpitations and feel like my heart is going to explode I would say. Then the darn Dr. would say the same thing...You just need to exercise. Nothing showed on his ekg so I must be lazy.

Keep advocating for yourself until you find out. And please send me just a dash of your energy.

[burdee]

First of all, the 'normal' range for TSH changed in 2003. So the new range is .3 to 3.0, rather than .5 to 5.0. Many docs (esp. endocrinologists) prefer the top number be more like 1.5. So consider what range your doc uses.

Secondly, you need to consider several thyroid tests, such as free t4, free t3, total t4 and total t3, as well as thyroid peroxidase antibodies, which indicate Hashimoto's antibodies. If you have Hashimoto's your TSH, T3 and T4 scores can be normal, while your Hashimoto's antibodies are very high.

Consider seeing an endocrinologist, if your current doc won't give you the full panel of thyroid tests.

[nuttmegs17]

Good advice. I am trying to get into see an endo now. The thing that is upsetting me is that I told my primary doc from the beginning that I had graves disease and was concerned about my thryoid - I asked for a full panel then (said this well over a year ago). She tested me and said they were normal and indicated she had run the full panel as requested...when I got my hands on the results recently I realized she really hadnt been runnign the full panels this entire time!- just the T4 and TSH...which as you mentioned could completely overlook a prob with Hashimoto. So frustrating.

[cassP]

lol- love the shoutout- thanks for thinking of me as an "expert" i consider myself an expert in feeling like crap- but i honestly learn most of my stuff from all you guys

nutmeg: boy do we all know how you feel- i can hear the anxiety in your post- and can SO relate to that- i relate right now- i feel like my hypo AND hyper symptoms have been getting worse- just had a panel on monday- and am starting to create paranoid scenarios as to why my Endo hasnt called me yet to up my dose or translate the panel

anyways- i second Sue above- you have to find a good Endo who will test ALL your thyroid numbers- AND test ALL your antibodies from time to time. i originally was under my PCP's care- and it probably made my Grave's worse. she swore she could treat me- but she only would put me on Synthroid- and i had to beg her to test my Hashimoto's antibodies. now i have a good Endo who was openminded to test my Grave's antibodies & i also just got my Reverse T3 tested. she was also openminded enough to try me on Armour.

anyways- it is so important that you find a doc who will test ALL your numbers- because our conditions can be very difficult to treat. for example: with my Endo- we were able to see with the numbers- that when i was on Synthroid only- my T3 shot down even though my TSH was moving down to a healthy range...

i also plan to re-test all my antibodies yearly or biannually to see what's going on there.

weight gain & loss for me didnt vary too much- i seemed to adjust my eating to my intestinal motility... but i notice- without enough T3 i start swelling, getting constipated and getting real CRANKY

good luck to u- i hope u get to a good Endo soon

[nuttmegs17]

You guys are awesome - thanks for the support! I was definitely in need of a kinda of virtual hug that is for sure.

I'm curious - I will admit to ignorance about all the possible thyroid hormones to test. Are there specific ones I should be on them to test or watch?

you've mentioned antibodies? rervse T3s....if you can think of them, I'd like to know so I can be as specific as possible (apparently not all docs understand "complete thyroid panel") with this new endo. THANK YOU!!!

[eatmeat4good]

I'm going to tag along here.

I just scheduled an appointment for tomorrow morning.

Could one of you experts please list all the thyroid tests we should have run?

TSH

T3

T4

Reverse T3

Free T3

Free T4

Hashimoto's Antibodies

Peroxidase Antibodies

That is what I got so far from this post. What are the graves antibodies test called?

I'm sorry, I'know you have listed these elsewhere, but I have a migraine headache and cannot look them all up.

Thank you so much, really you guys are great.

[nuttmegs17]

I will be interested in this as well...wanna go in prepared

[cassP]

ok, im a little confused cause everytime i went for thyroid tests- they tested for different things- so i hope i jot everything down correctly:

Thyroid Peroxidase Ab (TPO) -> main Hashimoto's ab

Antithyroglobulin Ab -> present in both Hashi & graves

Thyroid Stimulating Immunoglobulin (TSI)-> Grave's ab

TSH

T4 free

T3 free

T3 uptake

Reverse T3

and 1 test i also got these: Total T4 (T1 & T4) & Free Thyroxine Index <-im not sure what these 2 tests do- and they only ordered those for me 1 time. ??

[eatmeat4good]

Thank you Cass. You are a gem. At least I can ask for these things you listed. Thanks again.

[parrfunkel]

T3 uptake and free thyroxine index are pretty uaelss as I understand them. They are essentially mathematical equations based on total T4 that attempt to estimate free T4 and free T3. Better to just test FT4 and FT3 than try to guess them.

[cassP]

T3 uptake and free thyroxine index are pretty uaelss as I understand them. They are essentially mathematical equations based on total T4 that attempt to estimate free T4 and free T3. Better to just test FT4 and FT3 than try to guess them.

hhmm interesting...

u mean the t3 uptake isnt useful? i was assuming that it meant how our body & cells are using the t3? but i could totally be making that up

[parrfunkel]

CassP

Here is a description I found on the T3 uptake test

T3 Resin Uptake or Thyroid Uptake. (T3RU) This is a test that confuses doctors, nurses, and patients. First, this is not a thyroid test, but a test on the proteins that carry thyroid around in your blood stream. Not only that, a high test number may indicate a low level of the protein! The method of reporting varies from lab to lab. The proper use of the test is to compute the free thyroxine index

Here is the source

Open Original Shared Link

[nuttmegs17]

Hi - I'm back it's been a rough go. I just continue to feel worse and worse. i feel soo lightheaded and dizzy most days and just down in general

I had the TPO test which came back today as abnormal and which indicates Hashimotos (less than 30 is normal, I was 250)...in addition, my thyroid level jumped up quite a bit again (! - quite a huge jump actually esp since the last number was taken only 2 weeks ago) but is still technically within normal range.

I'm frustrated b/c my symptoms point to hypo - yet my doc is resistent to do anything about it bc my TSH level is still "normal"...what it sounds like is that they want me to continue to feel bad, and in fact feel worse until the lab finally says i'm abnormal and then they will pay attention to it....this doesn't make sense to me! I'm having all these crazy symptons and they are telling me it's not my thyroid (and of course I haven't ruled out Celiac yet)...but honestly these results tell me IT IS MY THYROID (or at least partly my thryoid). I guess i'm just floored that my symptoms and the way i feel are completely discounted bc some "arbitrary" (and I say arbitrary bc they defined the normal range under questionable circumstances from what I have read and have re-figured "normal" more than once...) test says so?

I'm frustrated b/c if not for this board, I wouldnt have known enough to even push for the TPO test...I had to really fight for it, only to have it come back as showing hashi's yet nothing is wrong?....even still they didn't test for FreeT3.

I'm getting the urine test for cortisol this weekend (ruling out cushings or adrenal probs)

My Vit D and Ferrati were also "normal" by their standards but literally half a point or less from being too low...I will look into taking some supplments bc who knows, maybe that will help me some (had to push for these as well)

They are still waiting on the results of my celiac blood test. We shall see....however, I'm concerned b/c I have noticed hashi's and celiac often go hand in hand.....and in fact untreated hashis can induce celiac....so even if i dont have it now, i could very well get it later bc it's untreated. Also, i'm concerned by my dizziness/lightheadedness...last time with graves, I literally passed out at work and was diagnosed at that point...i really dont want to have to get that bad before a doctor listens to me.

Any thoughts or anyone have a similar situation? If in the Chicago area - do you have recommendations for a doc that can look beyond a lab result?

[Jatango]

I'm a hashi's patient too, you really need to read up on:

www.stopthethyroidmadness.com

Then join the yahoo group "Natural Thyroid Hormones," they'll get your head on straight. It's a bit busy, so keep on posting and someone WILL help you. I hope you improve soon!

[cassP]

CassP

Here is a description I found on the T3 uptake test

T3 Resin Uptake or Thyroid Uptake. (T3RU) This is a test that confuses doctors, nurses, and patients. First, this is not a thyroid test, but a test on the proteins that carry thyroid around in your blood stream. Not only that, a high test number may indicate a low level of the protein! The method of reporting varies from lab to lab. The proper use of the test is to compute the free thyroxine index

Here is the source

Open Original Shared Link

thanku! its all so confusing- and since our docs dont always do a great job helping us- we often have to learn all of this ourselves

[cassP]

Hi - I'm back it's been a rough go. I just continue to feel worse and worse. i feel soo lightheaded and dizzy most days and just down in general

it's untreated. Also, i'm concerned by my dizziness/lightheadedness...last time with graves, I literally passed out at work and was diagnosed at that point...i really dont want to have to get that bad before a doctor listens to me.

Any thoughts or anyone have a similar situation? If in the Chicago area - do you have recommendations for a doc that can look beyond a lab result?

WAIT WAIT Wait a second... you've already been dx with Grave's in the past????? does your current doc or Endo know this??

and im sorry- but your Hashimoto's antibodies are a solid positive- you need to find an endo who will treat you even tho your TSH is "normal" AND you need a good endo who understands the complexity of your situation-

i also think (as i plan to do in the future)-> in addition to thyroid panels & medicating the symptoms- carefully- it would be a good idea for you to get routine antibody tests for both Hashi & Graves- to see how they're dominating your health, and how you may be improving.

yes- Celiac &/or Gluten Intolerance go hand in hand in with autoimmune thyroid disease...

good luck to u- i hope you find the perfect doctor soon!

[nora-n]

Yes, yes, if you already have a diagnosis of graves disease, you should always be treated as a thyroid patient, and not be judged by an ordinary TSH screening test.

TSH triggers antibodies very much, and you could get another episode of graves for that reason.

Check here: Open Original Shared Link

by the way, how were you treated last time, what meds did you take?

Another thing, gltuen triggers thyrodi antibodies very much.

[nuttmegs17]

Thanks for your quick responses....it's nice to feel as though I'm not crazy. i mean to be hearing "it's not your thyroid" despite the fact that i recognize the symptons from my past....ugh. And then to get tests confirming hashimotos and for them to be ignored....how is this standard procedure?

Yes, both docs know about my graves which is why i'm kinda shocked that no one will touch me until i'm abnormal (huh? if we feel a cold coming on, do we not drink more Oj/take vitamins? what ever happened to Prevention?!) How much worse do I have to feel? When i had graves, I was completely out of work and school (I was in college at the time) for 2 years bc of how sick i got...the reason i got so sick is that i went so long wo a diagnosis. It was devastating and it took everything to get back to normal. That's why i've been so alarmed at feeling as though I'm sliding back

I was wondering about that - having my antibodies taken as often as my normal thyroid blood test to keep an eye on them. good advice.

I will most def check out the yahoo board group. Maybe they'll know of a good endo. I'm the only one of my friends with these issues so word of mouth is pointless. It's very hard from looking at doc profiles online to know if they are open minded or not.

The endo that i saw, to her credit -did seem concerned that the TSH was rapidly going up, but then told my doc, that she felt I should only be tested ONCE a year...my TSH has jumped that much in 2 weeks, and yet, i should just wait a year....she also said she wasn't surprised to see the antibodies for hashi's. Yet why isn't she listening to my symptons? she was like "everyone wants it to be their thyroid" ugh

I am in the process of having my graves records faxed to my docs bc she did at least indicate that she would like to see where i normalized. Bc if it was much lower than even my #s they have on record, then it could explain some things. We shall see.

i've been reading that site that was mentioned stopthethyroidmadness - VERY interesting. maybe it will help me find a doctor bc this needs to e addressed

also interesting point about gluten and hashimotos. Def worth going gluten-free if only to get some relief in my symptons

[nuttmegs17]

oh for graves I just took methmezole (spelling) for a couple of years, gradually decreasing until my thryoid levels normalized....haven't been on anything since...I went sympton free for over 7 years. now something is rearing its ugly head.

[cassP]

Thanks for your quick responses....it's nice to feel as though I'm not crazy. i mean to be hearing "it's not your thyroid" despite the fact that i recognize the symptons from my past....ugh. And then to get tests confirming hashimotos and for them to be ignored....how is this standard procedure?

Yes, both docs know about my graves which is why i'm kinda shocked that no one will touch me until i'm abnormal (huh? if we feel a cold coming on, do we not drink more Oj/take vitamins? what ever happened to Prevention?!) How much worse do I have to feel? When i had graves, I was completely out of work and school (I was in college at the time) for 2 years bc of how sick i got...the reason i got so sick is that i went so long wo a diagnosis. It was devastating and it took everything to get back to normal. That's why i've been so alarmed at feeling as though I'm sliding back

I was wondering about that - having my antibodies taken as often as my normal thyroid blood test to keep an eye on them. good advice.

I will most def check out the yahoo board group. Maybe they'll know of a good endo. I'm the only one of my friends with these issues so word of mouth is pointless. It's very hard from looking at doc profiles online to know if they are open minded or not.

The endo that i saw, to her credit -did seem concerned that the TSH was rapidly going up, but then told my doc, that she felt I should only be tested ONCE a year...my TSH has jumped that much in 2 weeks, and yet, i should just wait a year....she also said she wasn't surprised to see the antibodies for hashi's. Yet why isn't she listening to my symptons? she was like "everyone wants it to be their thyroid" ugh

I am in the process of having my graves records faxed to my docs bc she did at least indicate that she would like to see where i normalized. Bc if it was much lower than even my #s they have on record, then it could explain some things. We shall see.

i've been reading that site that was mentioned stopthethyroidmadness - VERY interesting. maybe it will help me find a doctor bc this needs to e addressed

also interesting point about gluten and hashimotos. Def worth going gluten-free if only to get some relief in my symptons

you need to be finding a really good openminded Endo. even tho mine is kind of frustrating me right now- she's pretty good- and i asked for my best friend- what she would do with a patient that had a "normal" TSH but a lot of symptoms- she said, she would then test for the antibodies (which u did)- and then consider meds.

also- you are not a normal text book hypothyroid patient only-> you need a test WAY MORE than 1x a year. my mom is Hashimoto's only- been for 18 years- and they just dropped her testing down to 2x a year. right now- im going every 6-8 weeks.

and YES-- gluten affects the Hashimoto's AND Grave's antibodies. i also recently read that Soy can aggravate Grave's ab. there are people on here who have had their medication & antibodies greatly reduced after 3-5 years on Gluten Free diet.

good luck and keep us posted

[burdee]

Hi - I'm back it's been a rough go. I just continue to feel worse and worse. i feel soo lightheaded and dizzy most days and just down in general

I had the TPO test which came back today as abnormal and which indicates Hashimotos (less than 30 is normal, I was 250)...in addition, my thyroid level jumped up quite a bit again (! - quite a huge jump actually esp since the last number was taken only 2 weeks ago) but is still technically within normal range.

I'm frustrated b/c my symptoms point to hypo - yet my doc is resistent to do anything about it bc my TSH level is still "normal"...what it sounds like is that they want me to continue to feel bad, and in fact feel worse until the lab finally says i'm abnormal and then they will pay attention to it....this doesn't make sense to me! I'm having all these crazy symptons and they are telling me it's not my thyroid (and of course I haven't ruled out Celiac yet)...but honestly these results tell me IT IS MY THYROID (or at least partly my thryoid). I guess i'm just floored that my symptoms and the way i feel are completely discounted bc some "arbitrary" (and I say arbitrary bc they defined the normal range under questionable circumstances from what I have read and have re-figured "normal" more than once...) test says so?

I'm frustrated b/c if not for this board, I wouldnt have known enough to even push for the TPO test...I had to really fight for it, only to have it come back as showing hashi's yet nothing is wrong?....even still they didn't test for FreeT3.

They are still waiting on the results of my celiac blood test. We shall see....however, I'm concerned b/c I have noticed hashi's and celiac often go hand in hand.....and in fact untreated hashis can induce celiac....so even if i dont have it now, i could very well get it later bc it's untreated. Also, i'm concerned by my dizziness/lightheadedness...last time with graves, I literally passed out at work and was diagnosed at that point...i really dont want to have to get that bad before a doctor listens to me.

Actually untreated celiac disease can cause Hashi's, because gluten antibodies can attack any organ or body system. So the best thing you can do for your Hashimoto's condition is abstain from gluten. Thyroid supplements can compensate for the limited hormone production by your damaged thyroid. However, people with Hashi's who take thyroid supplements and continue to consume gluten, continue to need more and more thyroid as the time passes (and thyroid damage continues).

Find a doc who understand's autoimmune thyroid conditions like Hashimoto's and Graves. You do need thyroid supplements, but you also need to abstain from gluten.

I wonder: what 'normal range for TSH' does your current doc use? That 'normal range' was revised downward in 2003, but many docs still use the old range and miss hypothyroid problems. Nevertheless, your TSH can be 'normal' while your TPOab score is very high. Also your free T4 score can be normal while your free T3 score is very low. Some people have difficulty converting T4 to T3. So they need T3 as well as T4 supplements. I'm doing well on only T3, but no T4.

[nora-n]

Can you get Elaine Moore

[nuttmegs17]

Wow, thank you guys for all this information. I swear if not for boards like this i dont know what I would do!

I have been researching good docs to go to in my area who understand the intricacies of all these things - hard to find! i think I might have found one, but we shall see.

That is a good point - i should be treated like a patient already on thryoid hormones.

I've been using the suggested links here and reading up and what you are saying and what I'm seeing out there makes sense. i can't stand being treated like a lab result.

i just hope I dont have to go too much longer without some attention to my thyroid.

I got a negative on the celiac test but am still following up with a dr at the celiac center for adults at rush on monday. I had gone gluten-free for 3 weeks and then got back on it a little less than a month ago. They also didn't run more than one test (and it looks like there are various ways to test)...so definitely worth checking out and seeing what is what.

one of the other things the dr said was "yeah, i expected to see you test positive for the antibodies but it doesnt change your treatment" (which is NO treatment)...what the heck does that even mean?!

[nuttmegs17]

so basically what i'm reading here (let me know if i am wrong) - leaving my hashi's untreated (even if it's w/in "normal" -whatever that means- range) could put me at risk for graves again?! Geesh! Is it possible to have both at once? How on earth do you treat it then?!

I'm beyond irriated b/c I have been so proactive (At least I thought I was) in asking that my thyroid be looked at just based on the warning I received when i was young about the possibility for ressurgance...Ive been sympton free as far as thyroid for years yet I always asked to be tested. I didnt even know about the hashi's antibodies b4 coming to this site.

Then over a year ago, I knew something was up, told i was normal and brushed aside. The whole reason i was so proactive is that i didnt want to allow the thyroid disease to ever get out of control to the point it did last round...but it sounds like the rule of thumb is for dr.s to wait until you are useless before they act. infuriating!

and now i have suspicious gluten allergies...fun!