Thryoid Question

[Igg postive]

Anohter place for thyroid problems is Mary Shomon's (Open Original Shared Link) they have a forum Graves.

[nora-n]

Sounds like you only found doctors that look ONLY at the blood tests staring at them, without considering you already have a diagnosis. This usually happens if the doctor is from the MD school. (endos are also part of that school)

But there is a totally different medical direction, yes, and they have DO as their title, doctor of osteopathy.

They ahve thier own medical schools etc.

They typically have family practices.

They have a different philosophy, treat the whole patient, look at all the symptoms, and they have to consider that you do feel off. (despite of lab numbers inside the lab reference range, but wrong for you as an indiviual)

You can maybe as at the pharmacy which doctor prescribes Thyroid, like Armour Thyroid or Nature-throid or Westhroid, and from that list pick out the DO´s and those doctors should be knowledgeable about thyroid.

(some at the thyroid.about.com forum recommend going to a D.O.

About the thyroid.about.com forum, the forum host at the graves forum is the said Elaine Moore and she will answer if you ask her at hte forum. She is also on another forum somewhere. She wirks so she does not answer immediately. I am not talking about the graves and hyper folder in the main thyroid.about.com forum, but the separate one where Elaine is.

About how do you treat both: with an antithyroid drug, and thyroxine, it is called block and replace.

And, if you were off gluten for three weeks, this will cause negative blood tests and biopsies. The gut mucosa heals very quickly, like any wounds in your mouth....and celiac tsts are designed to only pick up severe damage, like total villous atrophy and severe tissue damage. The tisue transglutaminase test is not about gluten antibdies, but severe tissue damage, even other kinds of tissue damage like heart. So even a week or two off gluten can cause the ttg IgA test to come back negative. (the IgG version antibodies hang around much longer by the way so they usually do not use them...)

[nuttmegs17]

Thank you so much for the information: i found this guy on the good doc list for IL: dr. gary oberg, He's not too far outside of chicago and got on his schedule for the 31st.

Does he sound ok?

"

Gary R. Oberg, MD, Integrated Medicine: Allergies, Irritable Bowel Syndrome, ADD/ADHD, Candida, CFS/FMS, Migraines, Hormone imbalances including thyroid, PMS, menopause, 31 North Virginia Street, Crystal Lake, IL 60014, 815-455-1990 or fax 815-455-6780, http://www.garyoberg.yourmd.com, "Dr. Oberg is very knowledgeable and always looking to expand his ability to assist difficult patients. Dr. Oberg provides alternative medical treatments along with conventional medicine. Dr. Oberg prescribes Armour and Thyrolar as his first choice thyroid treatments. He looks at the person as a whole, and tries to identify not only what is going on, but also the root causes. Dr. Oberg provides complete and thorough medical care." (Added 4/04)

A reader writes:

"Dr. Oberg is amazing. I had Hashimotos for 20 years:10 untreated years, 2 Years on and off Synthroid, 5 years on Synthroid that felt the same as the 10 untreated years, 2 years an Thyrolar (feeling good), and thanks to Oberg 1 wonderfully normal year on Armor. The education and treatment I received from him was life changing. I referred a coworker with the same issues: 5 Years on Synthroid and feeling lousy-Tired-depressed. Now an Armour we both have a new thirst for life. He is one of the Thyroid top DR and it is well deserved." (July 2008)"

Dr. Epperly and Dr. Bain might also be possibilities if i need someone else....waiting to hear from Dr. Epperly's office just in case they have a quicker opening

[MsCurious]

Nuttmegs17, So sorry to hear you're feeling so bad, and having such a rough time with doctors. Your frustration is echoed in so many posts on this forum, that I wish all doctors would just sit down and read through them for an hour... they would be FLABBERGASTED... and embarrassed and ashamed! Nobody should have to feel bad and worse until their lab tests are sufficiently bad... why can't doctors just believe what patients tell them. Its awful that you've had to beg for tests.

What stage of celiac disease testing are you in? Its hard to keep track!

Hopefully, you will get some answers soon, but I agree with you... sometimes the wonderful people on this forum are the only understanding and supportive resources we have. Everybody else thinks we're whining, or crazy, or just want to find something wrong for kicks or something... that's frustrating!

After reading lots of replies from the others here with thyroid problems, I felt so totally ignorant about the topic, but apparently my new GI (the one that scheduled the endo biopsy for mid April) also ordered the following tests:

LIPID PANEL

SERUM IMMUNOELECTROPHORESIS

TSH

T4 FREE

After reading through the posts, I guess he must suspect thyroid issues? Can anybody that reads this tell me what those are for, specifically? The lipid panel I think is cholesterol (which in my case is always crazy good... which is an indication of celiac disease) ... maybe he didn't believe the last one lol Its always been between 131 and 151. I have no idea what the other three tests are for. Anybody know? Thanks in advance.

And Nuttmegs, you hang in there... and keep smiling... we're here for you!

[cassP]

I wish all doctors would just sit down and read through them for an hour... they would be FLABBERGASTED...

.......

LIPID PANEL

SERUM IMMUNOELECTROPHORESIS

TSH

T4 FREE

......

And Nuttmegs, you hang in there... and keep smiling... we're here for you!

um, i dont know how to break up the quote anyways- YES- i would love for all our docs to read these posts- they have no idea sometimes...

and your tests:

Lipid Panel= Cholesterol (should be HDL, LDL, and total #) and whatever else your lab includes

TSH is Thyroid Stimulating Hormone. i forget- either your pituitary or hypothalamus makes this- and when the thyroid isnt working properly- it makes more to signal the thyroid to work.

and

T4 free is T4 (Thiroxiine <-sp?)... its the precursor hormone your thyroid makes which should be turned into T3.

i REALLY think it's important for your labs to also include the T3 Free on every test too- this is a very important number- it indicates so much!

the other test- i have no idea what that is.

you might also want to ask your doctor to test ALL your Thyroid Antibodies!!! very important to see what's going on there!

keep us posted

[MsCurious]

um, i dont know how to break up the quote anyways- YES- i would love for all our docs to read these posts- they have no idea sometimes...

and your tests:

Lipid Panel= Cholesterol (should be HDL, LDL, and total #) and whatever else your lab includes

TSH is Thyroid Stimulating Hormone. i forget- either your pituitary or hypothalamus makes this- and when the thyroid isnt working properly- it makes more to signal the thyroid to work.

and

T4 free is T4 (Thiroxiine <-sp?)... its the precursor hormone your thyroid makes which should be turned into T3.

i REALLY think it's important for your labs to also include the T3 Free on every test too- this is a very important number- it indicates so much!

the other test- i have no idea what that is.

you might also want to ask your doctor to test ALL your Thyroid Antibodies!!! very important to see what's going on there!

keep us posted

Thanks cassP, I have no clue about anything related to thyroid.... and *crossing fingers* ... hope I really never need too learn much about it, at least relating to me! Apparently, my GI thinks there's a reason to check things, though. Personally, I think I'm gluten intolerant, and most likely NCGS. (not sure if I have celiac, but I know I don't have severe things like hair falling out, and rash, etc.... so I'm not sure about the celiac disease)... but I guess I'll find out mid-April about that. I sure wish I could get the doctor to do DGP test, but he said... its TOO NEW! OMG he actually said, they're only using that in the testing phase. I had to tell him, no, actually places like Mayo Clinic use that on a regular basis, and it has replaced the older tests. He sort of blew me off, but I think he was a little embarassed. Anyway, he didn't order it...said he didn't think it was available in their lab yet... pffffft. Why is is like pulling teeth to get these guys to do a full panel? I have had 2 tests and HLA, so I guess they think that's enough, but the two I had are often negative, so I'm still pretty much in limbo. Thanks again for the info, cassP!

[nuttmegs17]

i know, what is it with docs not running the tests you specifically ask for and blowing you off?

as for the lipid panel, I think there is some link between fat and cholesterol and it indicating either hashi's or graves...however I'm getting fuzzy....its good to see your doc is thinking outside the box a bit though!

i saw my gi guy at the celiac center today. I am already impressed. 1. HE LISTENED! 2. he knew more than i did (Which as snobby as it sounds, feels like a first) and 3. he had a great bedside manner. I did not feel talked down to or blown off. he even had a sense of humor. He took into account my history of graves, the hashi anitbodies and taught me a few things

He has me scheduled for a procedure in April He would have actually squeezed me in tomorrow (he was very eager and even asked the desk lady to find a spot for me asap) but unfortunately my work schedule is the problem. I think it's the endo procedure everyone mentions on here. He talked about varying levels of damage, and mentioned looking for bacterial overgrowth in addition to something else i never heard of. I actually feel like i am in good hands to have it ruled either in or out (and if it's out, he is already way ahead of me in thinking about what else it could be). he mentioned that the blood test i had doesnt really tell us anything at the end of the day at least as far as I am concerned (talked about varying levels of celiacs basically).

I am also set up to go for the integrated health guy on the 31st regarinding my thyroid and have an appt on the books with another one mid-april in case this guys stinks.

My celiac guy today actually paid attention to my Vit D and Ferratin levels and even told me my B12 was low for someone who isn't vegan (i didnt even catch that, haha despite all my research!)

Nice to be taken seriously.

I feel worse than every -the dizziness feeling inflammed/bloated, puffy is just getting worse, so I hope this all pans out!

[nuttmegs17]

For those with thyroid info...the endo finally wrote me about my test results...said my ferratin was low but D was normal...she's half right

anyways, she again stated I do not need treatment for hypo b/c

"You do have TPO antibodies present, which are the antibodies present in Hashimoto's. Patients who have had Graves' disease often have these antibodies as well; sometimes they develop hypothyroidism and sometimes they don't"

Is this true? Have i just had hashi' s the entire time and didn't know it? I guess i'm confused...is she saying i've had this the whole time?

[cassP]

For those with thyroid info...the endo finally wrote me about my test results...said my ferratin was low but D was normal...she's half right

anyways, she again stated I do not need treatment for hypo b/c

"You do have TPO antibodies present, which are the antibodies present in Hashimoto's. Patients who have had Graves' disease often have these antibodies as well; sometimes they develop hypothyroidism and sometimes they don't"

Is this true? Have i just had hashi' s the entire time and didn't know it? I guess i'm confused...is she saying i've had this the whole time?

no, it's not true. if you have TPO antibodies present- higher than "within range"- you DO have Hashimoto's. and you SHOULD be treated. you need to get yourself a different doctor.

it's the Antithyroglobulin Antibodies that can be present in both Hashimoto's and Grave's patients.

and then the TSI (Thyroid Stimulating Immunoglobulin Antibodies) are present in Grave's.

please find a different Endo

[cassP]

Thanks cassP, I have no clue about anything related to thyroid.... and *crossing fingers* ... hope I really never need too learn much about it, at least relating to me! Apparently, my GI thinks there's a reason to check things, though. Personally, I think I'm gluten intolerant, and most likely NCGS. (not sure if I have celiac, but I know I don't have severe things like hair falling out, and rash, etc.... so I'm not sure about the celiac disease)... but I guess I'll find out mid-April about that. I sure wish I could get the doctor to do DGP test, but he said... its TOO NEW! OMG he actually said, they're only using that in the testing phase. I had to tell him, no, actually places like Mayo Clinic use that on a regular basis, and it has replaced the older tests. He sort of blew me off, but I think he was a little embarassed. Anyway, he didn't order it...said he didn't think it was available in their lab yet... pffffft. Why is is like pulling teeth to get these guys to do a full panel? I have had 2 tests and HLA, so I guess they think that's enough, but the two I had are often negative, so I'm still pretty much in limbo. Thanks again for the info, cassP!

hey- my lab/docs didnt have the DGP test yet either... it is fairly new.

and keep on top of everything till u get the answers you need-

also- the hair falling out is more thyroid related (i guess it could be celiac related if you had really bad vitamin deficiencies). and the DH rash only occurs in 20% of Celiacs- so you dont have to have the rash either.

but then of course- Psoraisis & Excema, Acne, and Dandruff are all very very common in those with Wheat/Gluten Intolerance- regardless of whether u have celiac or NCGI.

its real fun isnt it- this journey to some sort of diagnosis... our med. system is so far behind on the gluten connection. and i just read yesterday that 97% of Celiacs in this country are undiagnosed. AND 47% of those with Thyroid Disease are undiagnosed. meaning- we kind of have to do all the legwork, huh

[MsCurious]

i know, what is it with docs not running the tests you specifically ask for and blowing you off?

as for the lipid panel, I think there is some link between fat and cholesterol and it indicating either hashi's or graves...however I'm getting fuzzy....its good to see your doc is thinking outside the box a bit though!

i saw my gi guy at the celiac center today. I am already impressed. 1. HE LISTENED! 2. he knew more than i did (Which as snobby as it sounds, feels like a first) and 3. he had a great bedside manner. I did not feel talked down to or blown off. he even had a sense of humor. He took into account my history of graves, the hashi anitbodies and taught me a few things

He has me scheduled for a procedure in April He would have actually squeezed me in tomorrow (he was very eager and even asked the desk lady to find a spot for me asap) but unfortunately my work schedule is the problem. I think it's the endo procedure everyone mentions on here. He talked about varying levels of damage, and mentioned looking for bacterial overgrowth in addition to something else i never heard of. I actually feel like i am in good hands to have it ruled either in or out (and if it's out, he is already way ahead of me in thinking about what else it could be). he mentioned that the blood test i had doesnt really tell us anything at the end of the day at least as far as I am concerned (talked about varying levels of celiacs basically).

I am also set up to go for the integrated health guy on the 31st regarinding my thyroid and have an appt on the books with another one mid-april in case this guys stinks.

My celiac guy today actually paid attention to my Vit D and Ferratin levels and even told me my B12 was low for someone who isn't vegan (i didnt even catch that, haha despite all my research!)

Nice to be taken seriously.

I feel worse than every -the dizziness feeling inflammed/bloated, puffy is just getting worse, so I hope this all pans out!

nuttmegs17, I'm SOOOOOO happy that you found a good GI!!!!!!! YAY! Finally something is going right for someone with a doctor that knows more than the people here! That's very good news for you! Thanks for sharing your positive experience! And, yes, hopefully you'll be feeling FABULOUS real soon!

[MsCurious]

hey- my lab/docs didnt have the DGP test yet either... it is fairly new.

and keep on top of everything till u get the answers you need-

also- the hair falling out is more thyroid related (i guess it could be celiac related if you had really bad vitamin deficiencies). and the DH rash only occurs in 20% of Celiacs- so you dont have to have the rash either.

but then of course- Psoraisis & Excema, Acne, and Dandruff are all very very common in those with Wheat/Gluten Intolerance- regardless of whether u have celiac or NCGI.

its real fun isnt it- this journey to some sort of diagnosis... our med. system is so far behind on the gluten connection. and i just read yesterday that 97% of Celiacs in this country are undiagnosed. AND 47% of those with Thyroid Disease are undiagnosed. meaning- we kind of have to do all the legwork, huh

I kind of don't think I have thyroid issues... but then again I have NO CLUE what kind of symptoms that causes. Ugh... I guess more research and studying is in order. I have never had eczema, but my brother and sister both do... one of them also has other celiac related issues.

Yeah, that figure was 98% undiagnosed... now its down to a whopping 97%... and truthfully, I would bet 96% of them have been tossed into the ... "we don't know what's wrong with you, so you have IBS" pool... and half of those have thyroid issues. Every medical institution should REQUIRE every doctor to attend a day long seminar of intense training on celiac disease and gluten intolerance in general!!! It should be a LAW~ ! You're such a day brightener cassP...

[nuttmegs17]

Yes, it feels good to know that i can trust my doc to some extend. i feel a bit like I wont have to study hard prior to a visit b/c he clearly knows more than i do which is fab. I'm going to talk to my boss about getting a day off even sooner. If it's the gluten making me feel worse/miserable, i'd like to get off of it asap

Thanks, Cass! Your information is so helpful....she again mentioned waiting until i'm out of range before treatment and said to test in 3months (which is an improvement over last time....then she told my doc to tell me to come in a year! ugh). I am definitely going elsewhere, bc even if she did treat me now for it, i have a feeling she'd stop as soon as the level went down and not base it on whether my symptons went down....just better to go elesewhere...I also have a feeling she'd only prescribe one type of med and i'm open to others if they are the right fit.

mscurious - even if it's not your problem, i would suggest being tested yearly or b-yearly for TSH, FREE T4, FREE T3 and the graves/hashi's anitbodies (Cass can prob give a better recommendation as to what to test on yearly but that's a start).....even if i don't have celiac, EVERYYEAR, I will at least do the blood test to keep somewhat of an eye one it. I will also always now ask for the graves and hashi's test, just to see if it's getting higher, if one is swinging harder than the other etc.

Too bad none of my docs knew enough to just do this already. but that is what boards like these are for

These autoimmune disease can trigger others and it's best to keep tabs on the most common.

My Gi doc was mentioned the prevalance of all these diseases -he said it's b/c they have changed over time (he got real specific with the TS cells and tissues,etc)...so they now attack more people (i always assumed that they were always just as present, just undiagnosed)....so he took time to educated and spoke really high level (ie, didn't assume i couldnt follow). Even if it's not celiac, i'm def sticking with this guy to sort me out! Dr. Mark DeMeo at Rush in Chicago (part of the adult celiac program).

Although i dont know how helpful the celiac test would be for me considering that even i dont have it, i will be cutting it out almost completely bc i just feel better w/o it

[parrfunkel]

According to what i've read TPO is present in both graves and hashimoto's so having positive TPO does not automatically indicate hashi's. TPO levels tend to be higher is Hashi's though. It's all wonderfully confusing isn't it?

A thyroid ultrasound or biopsy I believe can clarify what is going on in your thyroid. Graves has one type of tissue damage and hashi's another. If tests show both types of damage then that would indicate that you have been effected by both conditions actively.

Thyroid Peroxidase (TPO) Antibodies (TPOAb) / Antithyroid Peroxidase Antibodies

Thyroid Peroxidase (TPO) antibodies, are also known as Antithyroid Peroxidase Antibodies. (In the past, these antibodies were referred to as Antithyroid Microsomal Antibodies or Antimicrosomal Antibodies). These antibodies work against thyroid peroxidase, an enzyme that plays a part in the T4-to-T3 conversion and synthesis process. TPO antibodies can be evidence of tissue destruction, such as Hashimoto's disease, less commonly, in other forms of thyroiditis such as post-partum thyroiditis.

It

[MsCurious]

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.

Yikes! burdee, I read this post of yours with interest the other day, and since then have looked up a few things, including tests my doctor has scheduled, and my last TSH. I'm thinking I need to find a new internal medicine doctor. My new GI is the one who scheduled the new tests! My TSH from a year ago last fall was 3.85. According to what you're saying above... that's a bit above the "new" normal range, yes? What the heck does this mean? Sheesh, my regular GP is a nice guy, but I have found like FOUR tests that are out of normal range...and he just let them slide! With all that's going on with me, I think I'll go in tomorrow morning and request the rest of my lab test results. I haven't really paid much attention to the thyroid threads ... until this one, but I guess it is commonly linked to celiac disease? Sheesh, so much to learn! Is 3.85 anything to be concerned about? If not ... GREAT! I have enough to worry about.

[nora-n]

In Germany, they send suspected thyrodi patients to ultrasound, and if the gland is darkish, one gets the hashimotos diagnosis anyway. The TPO antibodies attack the gland and the gland is changed into inactive connective tissue which shows up dark on ultrasound.

Another way to diagnose is fine needle aspiration, and in Sweden patietns get sent to FNA and if they find changes, one gets the diagnosis.

Both are more sensitive than the blood tests, as the blood tests are known to miss 20% of cases.

So , if you have TPO antibodies, you HAVE hashimoto's. They attack your gland.

[nuttmegs17]

Thank you , Nora and everyone else! This is def very confusing. It's also confusing b/c somedays I have 99 of the 100 sypmtons and then other days some of the symptons calm down and it makes me think everything is all in my head.

MissCurious - Its def worth a second look. i do believe everyone has a different normal range so you should go by your symptoms. That is out of the new standard range so technically i do believe that would be considered hypo. However, if you aren't expressing symptons and otherwise feel fine, then you might be ok and just want to keep tabs (As in know your levels and watch if they go up as every doc may go by a different range)

and letting the borderline test results slide by seems to be standard practice these days! my mother told me that when i had grave i became very anemic and none of the doctors even mentioned it to us until we finally found a good one who had sense enough to tell us. i feel like i'm in the movie groundhog day with some of this stuff!

My mother and friend both had vit d levels higher than mine and yet were given prescription supplements to get their levels up.... when i asked my doc for a prescription the other day, she flatly refused. like i'm going to OD on Vit D! geesh. part of the reason I asked (which i explained) was that i wanted to avoid buying OTC b/c then I wouldnt be able to use my FSA card to buy them....she is sending me some OTC ones which is nice, but I mean, I'm BARELY in the normal range...how about getting me to optimum levels and not levels better suited to 90 year olds! i'm not even 30. ugh. sorry i just get mad

[cassP]

Yikes! burdee, I read this post of yours with interest the other day, and since then have looked up a few things, including tests my doctor has scheduled, and my last TSH. I'm thinking I need to find a new internal medicine doctor. My new GI is the one who scheduled the new tests! My TSH from a year ago last fall was 3.85. According to what you're saying above... that's a bit above the "new" normal range, yes? What the heck does this mean? Sheesh, my regular GP is a nice guy, but I have found like FOUR tests that are out of normal range...and he just let them slide! With all that's going on with me, I think I'll go in tomorrow morning and request the rest of my lab test results. I haven't really paid much attention to the thyroid threads ... until this one, but I guess it is commonly linked to celiac disease? Sheesh, so much to learn! Is 3.85 anything to be concerned about? If not ... GREAT! I have enough to worry about.

YES MsCurious- you definitely should always ask for a copy of your test results... i just developed this habit last year- and looking at everything they've missed in the past- i will ALWAYS get copies. in fact- 2 labs ago- i had them mail me my Thyroid results & Vit. D test- thank God i did- because otherwise i wouldnt have known that i was Vitamin D deficient!!! doc didnt think it was important i guess

so, ive been supplementing now- and already have less pain, cant wait to bring it up with her in april

[scottyg354]

Ugghhh. Thyroid issues. I'm hypo. It's a freakin Disaster. My TSH was at 8.5 when they found it. I was sleeping like 15 hours a day. Basically, wake up, work and sleep. I would work out, I would lose weight and gain it back almost instantly. I also had bad anxiety and fatigue, as well as brain fog. Aches and pains and stomach issues.

I started taking thyroid hormones (levothyroxine) and they seemed to help with my sleep problem. Everything else still lingers 4 months later, hence why I am on the celiac boards, because I know something else is going on.

Let me tell you though, your thyroid can definetely put you out big time. I've heard of people being lower then your TSH level and having major issues. I've also heard of people with TSH in the 15-20 ranges and not having any symptoms. All depends on the person. Right now I'm at like 3.2 and I can feel some difference.

[nuttmegs17]

Yes, thyroid problems are no joke. I remember as much when I had graves. The TSH controversy continues to facinate me.

In anticipation of my appt with a new doc coming up this week, I had my Mayo Clinic records faxed to me. I saught treatment for my graves way back then (2002-2004) and they successfully got my graves into remission. I was curious to see what thryoid tests they ran (and was also curious to see what my TSH was as I ended treatment to compare to now as all my docs keep referring how "normal" my TSH is) The results are hilarious.

My docs at the Mayo Clinic - over the course of YEARS, only tested my TSH about 2 times. I had a ton of labs to go through and had a tough time even finding my TSH levels - they ran about every other thryoid test under the sun EXCEPT the TSH. In all honest1y, based on the notes my doc barely pulled the TSH levels or even seem concerned with the levels! He was all about the antibodies, the Free T4, the Free T3s and what THEIR levels meanT. I find this funny considering that my current hospital ONLY goes by TSH to the point of extreme.

Clearly he was more concerned that I had SYMPTONS of graves (the eye problems, a resting heart rate of 120, insomnia ,etc) and with the other levels. At the time, they also tested me for hashi's and I was negative (I looked at the numbers so I could accurately compare them to the numbers I know now).

If need be, I'll will fly to FL to see that doc again - he could clearly see the bigger picture. For cost reasons, I'm hoping this new guy works out for me though. We'll see.

[cassP]

Yes, thyroid problems are no joke. I remember as much when I had graves. The TSH controversy continues to facinate me.

In anticipation of my appt with a new doc coming up this week, I had my Mayo Clinic records faxed to me. I saught treatment for my graves way back then (2002-2004) and they successfully got my graves into remission. I was curious to see what thryoid tests they ran (and was also curious to see what my TSH was as I ended treatment to compare to now as all my docs keep referring how "normal" my TSH is) The results are hilarious.

My docs at the Mayo Clinic - over the course of YEARS, only tested my TSH about 2 times. I had a ton of labs to go through and had a tough time even finding my TSH levels - they ran about every other thryoid test under the sun EXCEPT the TSH. In all honest1y, based on the notes my doc barely pulled the TSH levels or even seem concerned with the levels! He was all about the antibodies, the Free T4, the Free T3s and what THEIR levels meanT. I find this funny considering that my current hospital ONLY goes by TSH to the point of extreme.

Clearly he was more concerned that I had SYMPTONS of graves (the eye problems, a resting heart rate of 120, insomnia ,etc) and with the other levels. At the time, they also tested me for hashi's and I was negative (I looked at the numbers so I could accurately compare them to the numbers I know now).

If need be, I'll will fly to FL to see that doc again - he could clearly see the bigger picture. For cost reasons, I'm hoping this new guy works out for me though. We'll see.

what did the previous doc do to put your Grave's into remission?? im very curious. i have both right now and am nervous as to how i get better. they're medicating me now for the Hashi's. looking at the antibodies-> im Hashi dominant, but i do have some hyper symptoms too. sometimes it's worse since starting meds. my hyper symptoms got really bad when i was on synthroid only.

now i seem to be a little more normal, but right now im trying to write a stupid paper for school, and my heart has been fluttering all day

i am hoping that being gluten free will help bring all the antibodies down, and make me feel better. im also taking Royal Jelly- as it is supposed to calm the grave's.

im trying to get regular exercise in to calm my immune system.

but would love to hear what else could be done to calm the antibodies down ESPECIALLY the grave's

[nuttmegs17]

Sorry for the late response, I had to travel and work has been insane so havent been online as much

I'm not sure that he did anything special to put it in remission. Looking at the labs, I was on 120 dose of mythemozole (Spell?). It was knocking me out. He took me off all other meds i was on at the time (birth control, anitdepressant, beta blockers, etc) and broke up the dosage throughout the day which no doc had tried yet with me. Doing all that made a difference and I improved and went into remission.

Have you researched holistic things to do to manage the antibodies? About.com has a lot of great thyroid articles and someone else linked earlier in this discussion to a board about graves disease. Once I have a better idea of what is wrong with me (I have my endoscopy on wed so can then finally go back to being gluten-free) I am going to implement holistic approaches to staying as healthy as possible: ie, cutting out gluten and milk, eating certain foods, taking supplements (heard selenium can help with the antibodies?),etc

I hope you find relief, this is very difficult

[nuttmegs17]

I saw a new doc that seems promising. Found in him on the "good doc" list and he was progressive in his attitude about thryoid disease and celiac. He told me he didnt care about the blood test or the endoscopy (told me to skip it). Said that based on my symptons he would recommend me cutting out gluten immediately. I feel as though i've glutened up for this endoscopy and it's on Wed so I'm going to just see it through. It will be interesting to see the results and as i will go gluten-free after, will be my only real chance to do it as i do not plan on glutening up again. No way.

He was not shocked that my other docs wouldnt treat my hashis as he has seen it a million times before but was upset that they wanted me to continue to suffer. He again - similar to what I found in my Mayo records - downplayed the role of TSH in indicating anything. He basically said "you walk like a duck, talk like a duck, look like a duck, I'm going to treat you like a duck". He ordered more thyroid blood tests so he can get a good idea of what needs tweaking but will prescibe Armour as he said, synthroid might make me feel worse (he needs to look at the tests to be sure).

He said he wouldn't be surprised if I have been celiac or have the intolerance all my life which would have triggered my first episode with graves and now this hashis. No real way to know for sure though. He said he hopes for my sake that is my problem as it's a relatively easy fix; avoid gluten. If it doesnt help, he said he will get to the bottom of it, as there is no way at 29 years old, i should feel this bad. It was good to hear that he was willing to, you know, WORK to figure it out instead of just reading a lab result.

I ony wish he was located in the city as seeing him will require taking off half days of work - its of little consequence though if it helps!

This coming week should be interesting as I get the full thyroid panel results as well as the endoscopy.

He again, was shocked at my vitamin D, iron, and b12 levels. He said all of them exasperate thyroid symptoms so it's no wonder I feel lousy. He told me with in 5 minutes of talking to him, that I should fire my primary. Will do, but first I'm tackling this.

Oh - some of you might get a chuckle: I had seen a different endo, who said my thryoid was fine and that it was very likely that i had this 1 in a million metabolic disease/disorder that causes you to gain weight and that there is no test to prove and nothing you can do to treat it. Yes, bc that is so much more likely given my symptons and medical history (sarcasm).

I can say that with some humor now, but it was devastating when she told me that. i had no idea what could be wrong and when she said that i felt so doomed and hopeless. My husband had to basically talk me off of a ledge. That seems like a really irresonspible diagnosis to give a patient just bc you dont understand what is going on and lab doesnt give you the quick answer. Why are they so much more willing to jump to THAT conclusion than the thyroid thing?! Again this is a doctor at one of the "best" medical centers in the country.

[cassP]

nutmeg- glad u found a better doc! he sounds good- like i said, when i was on Synthroid ONLY-> my hyper symptoms got worse! big time... adding the Cytomel helped.. but now im on Armour- and i think it's better- but i need a higher dose.. some days are good, and some days, i get so angry that i have to wait for labs again and permission to raise the dose.. i ALREADY have had my life on hold for years from this undiagnosed crap.

anyways, yes i am taking Selenium-> in the form of 3 Brazil Nuts a day. you can overdose on selenium- so that's why 3 is my max. i read a study- that after 1 year- those with Hashimoto's antibodies had them greatly reduced.

i also read the Selenium calms the Graves too. Selenium helps your body convert the T4 to T3. im also taking Royal Jelly for the Grave's.

of course im 100% Gluten free- & also i am TRYING to avoid soy- as it can aggravate the Grave's.

still learning how to incorporate Regular exercise, enough sleep, and reducing stress-> all important to calm the immune system.

good luck to u too

[MsCurious]

I saw a new doc that seems promising. Found in him on the "good doc" list and he was progressive in his attitude about thryoid disease and celiac. He told me he didnt care about the blood test or the endoscopy (told me to skip it). Said that based on my symptons he would recommend me cutting out gluten immediately.

Good for you nuttmegs17! So good to hear you are having better luck with doc now! Hope you feel all better really soon.