Aa
How many agree with me about TSH?
In another post I had asked some questions about my neck being extremely swollen and having all the symptoms of hypothyroidim. Anyway, my TSH was 3.79 and another lady is fighting with me that there is this is extremely normal and a great level to be at. I have heard countless things about anything over 3 not being ideal. My question is this though: I know what I feel. I KNOW I have something wrong with my thyroid. I am miserable. How many of you also felt bad with TSH around these levels. How many agree that this level is not ideal and can cause symptoms???
I heard of doctors not wanting to believe you have a thyroid problem, but the last thing I expected was to come here for help and have somebody tell me I am making things up. I am literally choking on my swollen thyroid (I get an ultrasound Monday). How can anyone tell me that I am imagining that???
I heard of doctors not wanting to believe you have a thyroid problem, but the last thing I expected was to come here for help and have somebody tell me I am making things up. I am literally choking on my swollen thyroid (I get an ultrasound Monday). How can anyone tell me that I am imagining that???
I was diagnosed with an enlarged thyroid in 2004. Testing showed a tsh level of 2.5 but anitibodies confirmed Hasimotos. When my levels spiked to 4.8 in 2006, I was put on medication.
Being 51 and peri-menopausal, I have common symptoms that could be blamed on either. My energy levels are pretty good. Weight is average for my height based on charts. My main problems are just not feeling quite right, fullness in neck, insomnia (Take Ambien), bloating in the stomach and most annoying, fat pads around base of my neck. Does anyone else have these??
I look in the mirror and swear my face looks different.
My current TSH is 2.42. I just went to a new endo at Hopkins the other day. He looked at some of my other blood work, cholesterol, HDL,etc. and said everything looked great - that I will probably live to be 100 - although I don't feel that way! My thyroid gland is still enlarged. Is medicine supposed to shrink it? He said that getting my TSH levels lower unnecessarily could be bad.
I have read The Thyroid Diet Book which is very good . THe author has Hasimoto's as well. I have also been taking supplements -dialy vitamin, CLA to reduce bloat, Dandelion Root for consipation, Progreens and a blend of CoQ10,L Carnitine and Alpha LipoicAcid. Plus following a diet to reduce inflamation in the body - also a ton of water. Exercise. Trying to be pro-active.
My last endo said to just take the medicine, that I would be on it for life, period!
Seems that they don't provide info on diet, supplementation, reference material, etc. It is sad that you are left on your own to figure it out.
Anyhow, I appreciate any feedback. Shelley
Being 51 and peri-menopausal, I have common symptoms that could be blamed on either. My energy levels are pretty good. Weight is average for my height based on charts. My main problems are just not feeling quite right, fullness in neck, insomnia (Take Ambien), bloating in the stomach and most annoying, fat pads around base of my neck. Does anyone else have these??
I look in the mirror and swear my face looks different.
My current TSH is 2.42. I just went to a new endo at Hopkins the other day. He looked at some of my other blood work, cholesterol, HDL,etc. and said everything looked great - that I will probably live to be 100 - although I don't feel that way! My thyroid gland is still enlarged. Is medicine supposed to shrink it? He said that getting my TSH levels lower unnecessarily could be bad.
I have read The Thyroid Diet Book which is very good . THe author has Hasimoto's as well. I have also been taking supplements -dialy vitamin, CLA to reduce bloat, Dandelion Root for consipation, Progreens and a blend of CoQ10,L Carnitine and Alpha LipoicAcid. Plus following a diet to reduce inflamation in the body - also a ton of water. Exercise. Trying to be pro-active.
My last endo said to just take the medicine, that I would be on it for life, period!
Seems that they don't provide info on diet, supplementation, reference material, etc. It is sad that you are left on your own to figure it out.
Anyhow, I appreciate any feedback. Shelley
We will all be thinking about you on Monday :-)
If you are lucky, the tech will consult the radiologist about your test afterwards like my tech did and you'll know something basic right after.
I am very sorry you have been having so many symptoms. It seems to make sense that whatever is going on in your throat could be the sole cause or at least the "instigator". It sounds dreadful. Cushing's also causes the neck to swell.
I have an enlarged thyroid, but my neck looks thin to an outside observer.
I wouldn't worry about the soy. It was a healthy choice and there is room for doubt that it causes goiters. Apparently there was one study done on Japanese women, that has never been replicated for confirmation, that showed it could cause goiters but studies also show that women in parts of Japan with high soy consumption have no higher incidence of goiter than anyone else.
It did promote goiter in iodine deficient rats, but idodine deficient Americans are not. I wouldn't think on it much.
My only real symtpom of consequence this whole time has been fatigue along with this "brain fog" where I forget the simplest things, almost like my sense "drops out" and leaves a hole or blank space in time, sometimes.
I have had some muscle/joint pain as well, but think it's just made more pronounced by the fatigue. I work out a lot and sometimes probably don't stretch adequately afterwards if I don't have time. That's probably what causes the muscle pain and the thyroid added in just makes a bad combination.
The cognitive decline has been the hardest thing to cope with. I used to be so sharp and competent, good at things. It's making me depressed for sure. I blew an easy easy audition ( I act part-time, or used to) for a national ad last week because I blanked out and followed a written stage direction that wasn't for an audition situation and which I knew wasn't. That's the weird part.
If my boss, on my regular job, tells me I look like teenager one more time I'll scream. I am NOT a teenager. I am just entering middle-age and am on levothyroxine and feel like an old lady. Yes, she's a few decades older than I am, but I have no doubt she feels better than I do now. LOLOLOLOL
Good luck Monday. Let us know how it goes.
If you are lucky, the tech will consult the radiologist about your test afterwards like my tech did and you'll know something basic right after.
I am very sorry you have been having so many symptoms. It seems to make sense that whatever is going on in your throat could be the sole cause or at least the "instigator". It sounds dreadful. Cushing's also causes the neck to swell.
I have an enlarged thyroid, but my neck looks thin to an outside observer.
I wouldn't worry about the soy. It was a healthy choice and there is room for doubt that it causes goiters. Apparently there was one study done on Japanese women, that has never been replicated for confirmation, that showed it could cause goiters but studies also show that women in parts of Japan with high soy consumption have no higher incidence of goiter than anyone else.
It did promote goiter in iodine deficient rats, but idodine deficient Americans are not. I wouldn't think on it much.
My only real symtpom of consequence this whole time has been fatigue along with this "brain fog" where I forget the simplest things, almost like my sense "drops out" and leaves a hole or blank space in time, sometimes.
I have had some muscle/joint pain as well, but think it's just made more pronounced by the fatigue. I work out a lot and sometimes probably don't stretch adequately afterwards if I don't have time. That's probably what causes the muscle pain and the thyroid added in just makes a bad combination.
The cognitive decline has been the hardest thing to cope with. I used to be so sharp and competent, good at things. It's making me depressed for sure. I blew an easy easy audition ( I act part-time, or used to) for a national ad last week because I blanked out and followed a written stage direction that wasn't for an audition situation and which I knew wasn't. That's the weird part.
If my boss, on my regular job, tells me I look like teenager one more time I'll scream. I am NOT a teenager. I am just entering middle-age and am on levothyroxine and feel like an old lady. Yes, she's a few decades older than I am, but I have no doubt she feels better than I do now. LOLOLOLOL
Good luck Monday. Let us know how it goes.
I'm going to wait for my ultrasound and then go from there. I know whatever is in my neck is causing these symptoms, I just hope it can help. I can't imagine going on like this. I can barely function and, if all that stuff was not bad enough, I have to look bloated and bald =(. AHH. I have much respect for the people dealing with this, if it is infact what I have. My deepest sympathies go out to everyone. I DON"T wat a disease trust me. I'm 28 and I'm scared out of my mind about what is in my neck. ESPECIALLY since I consumed so much soy over the years. My doc has ran numerous tests and every other avenue seemed fine. Seeing as my thyroid is enlarged, she told me she highly suspects it is causing all these symptoms. She told me that I have to have a goiter or a nodule because my neck cannot just enlarge. She said this in fact could be causing me symptoms. She looked at my hair and had this horrible look on her face because a handful fell out and its dry and breaking. She seems like a good doc, and she is trying to figure it all out for me. She just wants to see what is in the US first. It is in God's hands now, and this weekend is just so scary because Monday I get the US. I'll keep everyone updated on the results. I lucked out. My appointment was 3 days after the US, but the doc cancelled and moved me up to tuesday. So now I only have to wait a day after the US to get results. Keep me in your prayers everyone, and I will keep you in mine!
hi i'm too trying to learn about thryoid. i have a 5.2cm nodule (cold complex) and we tried the rai I131 pill to shrink it but unfortunely, in increased in size. my TSH was 111 about 3/4 months after the rai. i didn't know what was going on and i didn't call the dr till about 3wks into, i felt like ****!!! (06) by reading messages on this site i learning how it makes you feel. mine was just 30.4 , 6wks ago and now its 8.2 , don't see the dr till end of july. also, i have insonmia,. do you have pain in neck,ear, sore throat, hoarness? what are your symptoms? i hope things are going good and you get some answers.
As a subscriber to a private health insurer who sees her co-payments increasing yearly I am all for doctors using good judgment when ordering tests.
Everyone pays for everyone else's healthcare no matter what moniker the program has.
I have a friend who is a physician who told me flat out that it doesn't matter if I had a Hashi's antibody test or not, it's the same synthroid. I had a TSH over reference range which led to exam and nodules being felt, then an antibody test ( I don't have them) and an ultrasound for the nodules. US showed goiter , diffuse hetergeneous thyroid and two nodules noted with other smaller ones present.
I was not put on thyroid meds by the doc until a second test, taken several weeks later, came back with confirmed elevated TSH levels. Synthroid doesn't treat Hashis (nothing does). It treats TSH levels. I have no antibodies but I have elevated TSH. I never asked for meds. Doc called and told me I needed it and they wanted my pharmacy # . Having entered only my second week on them (and I know I am supposed to wait 6-8 weeks to judge ) my guess is that they may give me a lower TSH, but they will not take away the symptoms entirely.
I suspect people have all kinds of health issues and thyroids do take the blame for more than they cause. The common symptoms people report with thyroid are not unique to thyroid problems.
Good luck on your ultrasound. I hope it turns out to be something easily treatable (unlike Hashis). Try not to look to have a disease just to "be right". In my experience and observation (usually) nobody around you who has never had thyroid disease has a clue, so you don't even get much consideration.
Not even when you're tired enough to die, but just won't LOL. So, if you have it you'll have a sometimes practically debilitating illness that most people around you won't even view as extant.
If you do show Hashi's-like changes? Don't necessarily expect meds unless your levels warrant them. Sometimes this thyroiditis stuff corrects itself, so you may just go back to normal on your own.
Friends, neighbors and others are telling me they have been on the meds for years and it doesn't really solve anything. Some days are better than others.
Everyone pays for everyone else's healthcare no matter what moniker the program has.
I have a friend who is a physician who told me flat out that it doesn't matter if I had a Hashi's antibody test or not, it's the same synthroid. I had a TSH over reference range which led to exam and nodules being felt, then an antibody test ( I don't have them) and an ultrasound for the nodules. US showed goiter , diffuse hetergeneous thyroid and two nodules noted with other smaller ones present.
I was not put on thyroid meds by the doc until a second test, taken several weeks later, came back with confirmed elevated TSH levels. Synthroid doesn't treat Hashis (nothing does). It treats TSH levels. I have no antibodies but I have elevated TSH. I never asked for meds. Doc called and told me I needed it and they wanted my pharmacy # . Having entered only my second week on them (and I know I am supposed to wait 6-8 weeks to judge ) my guess is that they may give me a lower TSH, but they will not take away the symptoms entirely.
I suspect people have all kinds of health issues and thyroids do take the blame for more than they cause. The common symptoms people report with thyroid are not unique to thyroid problems.
Good luck on your ultrasound. I hope it turns out to be something easily treatable (unlike Hashis). Try not to look to have a disease just to "be right". In my experience and observation (usually) nobody around you who has never had thyroid disease has a clue, so you don't even get much consideration.
Not even when you're tired enough to die, but just won't LOL. So, if you have it you'll have a sometimes practically debilitating illness that most people around you won't even view as extant.
If you do show Hashi's-like changes? Don't necessarily expect meds unless your levels warrant them. Sometimes this thyroiditis stuff corrects itself, so you may just go back to normal on your own.
Friends, neighbors and others are telling me they have been on the meds for years and it doesn't really solve anything. Some days are better than others.
That scares me. That is why I want more testing after hearing cases like yours. It seems like something more needs to be done about thyroid testing, because it is not entirely accurate.
Same premise as with cancer supression .. take the Synthroid and the pituitary and thyroid stop working and thus nothing for stray cancer cells to feed off of, or nodules to thrive and get larger! That is my understanding .. basic difference from Hashi's is that if it was working before the Synthroid "most likely" it would work again if one stopped the Synthroid .. in my case won't happen as the gland has failed since surgery or was never working in the first place. Happens 30% of the time according to Dr. Lupo on the other board.
C~
C~
Hi All,
Interesting research below..
http://web.archive.org/web/20040606132447/http://www.thyroid.org.au/Information/NormalTSH.html
I can only speak from my own painful experience. I was showing symptoms in mid 2003. In jan 2004 my TSH was 4.1. No treatment offered. I was on my knees by mid 2005, TSH was 53! I now have adrenal insufficiency as well, have tried T4 only, Armour, T4/T3 combo and T3 only and am still battling to get well. It's been terrible but I know I need treatment way back in Jan 2004..if only the stupid Drs had checked antibodies....
Hi Jean,
About the autoimmune stuff - there are some plausible theories floating about. Here's some links to a three part series done by a well known Australian Doctor/Scientist (Medical Doctor & a Scientist) Dr Karl Kruszelnicki. They're not very long and it is easy to understand - it is a transcript of a radio segment he did.
You'd find it interesting that more women get autoimmune problems AND more women than men get thyroid problems in general too.
Part 1
http://www.abc.net.au/science/k2/moments/s992603.htm
Part 2
http://www.abc.net.au/science/k2/moments/s996867.htm
Part 3
http://www.abc.net.au/science/k2/moments/s1002754.htm
Happy reading!
Cheers,
~Jen
About the autoimmune stuff - there are some plausible theories floating about. Here's some links to a three part series done by a well known Australian Doctor/Scientist (Medical Doctor & a Scientist) Dr Karl Kruszelnicki. They're not very long and it is easy to understand - it is a transcript of a radio segment he did.
You'd find it interesting that more women get autoimmune problems AND more women than men get thyroid problems in general too.
Part 1
http://www.abc.net.au/science/k2/moments/s992603.htm
Part 2
http://www.abc.net.au/science/k2/moments/s996867.htm
Part 3
http://www.abc.net.au/science/k2/moments/s1002754.htm
Happy reading!
Cheers,
~Jen
bubblytoes
Sorry about any confusion - cost is only ONE factor - and probably more of a factor here in Australia than in U.S. because here public funds pay for approximately 85% of each bill for tests and doctors visits (out of hospital). Health insurance here only kicks in for hospital services (and some non-doctor related services such as dental and physio if you have selected this type of cover).
More importantly until a thyroid disorder is diagnosed a thyroid antibody test is just silly - I'd go so far as to say irresponsible. *To anyone reading this* - Before you get angry read that again - emphasis on the part "until a thyroid disorder is diagnosed"... this is just plain logic. BUT as we all know diagnosis of thyroid problems is controversial - hey this thread wouldn't be here if it wasn't!
I also had a goitre and normal labs and felt blah for many many years - now that I've had a TT (6 months ago) I am finally getting to the source of my health complaints as the doc's have been willing to investingate other causes as my thyroid is certainly not the cause. Turns out it was other stuff happening all along.
I wish you well and hope it doesn't take long to find that magic dose that makes your feel great.
and it wasn't until after my surgery did my Endo make the diagnosis and totally agree with me that I was having mega symptoms with a "NORMAL" TSH of 2.4 !!!!!! After the surgery my #'s rose and so did my symptoms .. they rose dramatically and I told my Endo of my findings B4 she told me the results of the TSH bloodwork so I couldn't have made them up!!!!!! I ended up on 2-3X the am't of laxative bcz of the TSH and muscle pain and cramps and other things, too .... finally all is resolving and I feel TERRIFIC at TSH of 1.1 ....... it took a change in symptoms corellated to my TSH for them to see the light AND I WAS CLUELESS thyroid could play such a major role!
C~
C~
My Endo starts treating with Synthroid at 3.0 if you have no antibody issues. I am about 4 months post partial thyroidectomy and my last TSH and FT4 were indicating that I am heading Hypo.
At the end of April I had a TSH of 2.85 (lab range .5 - 6.0) and FT4 of .8 (lab range .7 - 1.8) My endo says that these ranges include people with Thyroid antibody disorders and those without are Hypo with or without symptoms at about 3. I retest again at the end of July and if I am at 3 or over, and my FT4 is still low, we are starting on Synthroid.
I can tell you is that I am not feeling as perky and as energetic as I was prior to my surgery (multi nodular goiter with predominate 4cm nodule, no cancer in final pathology) when my TSH was 1.7 (range .35 - 5.5) and FT4 was 2.4 (lab range 1.2 - 4.9)
Bottom line, you are the expert on YOUR body, and if you know something isn't right be persistent!
At the end of April I had a TSH of 2.85 (lab range .5 - 6.0) and FT4 of .8 (lab range .7 - 1.8) My endo says that these ranges include people with Thyroid antibody disorders and those without are Hypo with or without symptoms at about 3. I retest again at the end of July and if I am at 3 or over, and my FT4 is still low, we are starting on Synthroid.
I can tell you is that I am not feeling as perky and as energetic as I was prior to my surgery (multi nodular goiter with predominate 4cm nodule, no cancer in final pathology) when my TSH was 1.7 (range .35 - 5.5) and FT4 was 2.4 (lab range 1.2 - 4.9)
Bottom line, you are the expert on YOUR body, and if you know something isn't right be persistent!
Most doctors are reluctant to order extra tests such as thyroid antibody until a thyroid problem has been detected. This is totally reasonable. All these tests are really expensive and a doctors may order many thousands of dollars worth over any given day - they are taught to keep ecconomy in mind. As a patient many people would appreciated that.
The thyroid antibody test can be positive even without thyroid disease eg. pernicious anaemia - but Vitamin B12 would also be very low and confirm this diagnosis.
The thyroid antibody test may show nothing but autoimmune disease can still be present - shows up on biopsy after surgical removal.
Even if you are positive to thyroid antibodies all it tells us is that your condition is possibly autoimmune (probably Hashimoto's in your case) and that only instructs us on the possible future course of progression. Antibodies cannot be treated. SO it is of limited therapeutic value.
So as you can see the thyroid antibody test only gives us reliable information once a thyroid disorder has been confirmed. Even then it is of limited usefullness - so most people will only get one (or just a few) tests for thyroid antibodies in their lives.
IF your scan shows a goitre and the doctor still refuses to do the antibody test then I too would advice to see another doctor - but until then your doctor is doing exactly what he should be doing by the book. Don't be too quick to write him/her off.
The thyroid antibody test can be positive even without thyroid disease eg. pernicious anaemia - but Vitamin B12 would also be very low and confirm this diagnosis.
The thyroid antibody test may show nothing but autoimmune disease can still be present - shows up on biopsy after surgical removal.
Even if you are positive to thyroid antibodies all it tells us is that your condition is possibly autoimmune (probably Hashimoto's in your case) and that only instructs us on the possible future course of progression. Antibodies cannot be treated. SO it is of limited therapeutic value.
So as you can see the thyroid antibody test only gives us reliable information once a thyroid disorder has been confirmed. Even then it is of limited usefullness - so most people will only get one (or just a few) tests for thyroid antibodies in their lives.
IF your scan shows a goitre and the doctor still refuses to do the antibody test then I too would advice to see another doctor - but until then your doctor is doing exactly what he should be doing by the book. Don't be too quick to write him/her off.
Thanks for all the info. I did not jump anyones head off by the way. I JUST WANTED help and was told I'm imagining my symptoms. My doc said it definitely was my thyroid that was swollen. I will wait for the ultrasound, I'm just going on what she said. I hadn't even known where a thyroid was before that. She is also testing me for a variety of things. I just know deep down that my thyroid being swollen is causing all these symptoms. I was tested for everything else, and those tests were fine. These included iron, and vitamin B12. I will get a new doc if she does not give me an antibody test and the ultrasound confirms something. I'm not trying to prove or disprove anyone, I just want to feel good again =(. I appreciate everyones help!!!
I agree self diagnosis is not a good thing but I can understand about feeling crappy all the time.. Whats that saying I am sick and tired of being sick and tired.
You think Dr.'s don't order test's because of cost..I totally disagree!! Why do we pay for medical insurance. or pay out of our pocket because we can't afford insurance. Or those who can't afford insurance and die needlessly. I am extremely grateful that I have excellent insurance but my employer pays 8,563 dollars a month, I pay nothing. I work for a world class areospace company.
I am 15 days post op for PT and biospy ( large calicfied tumor DR. said it was hard as bone) discovered I have Hashimoto's and probably have had it for years and years. My other half of thyroid is not working and I have to wait two months well 6 weeks now before they will even test my blood. I wasn't happy but understand after it was explained to me that I have stored hormones in my body. Feeling YUK everyday now. Use to have good and bad days. All my other TSH were in the normal range. I have felt like **** for many years but never knew what was wrong. Actually didn't even go to the Dr. except for yearly visit.. Just thought because I was getting older I was falling apart see what self diagnosis got me. I could have been diagnosed years ago..:)
danie17075rm, Hang in there and keep telling the Dr. your symptoms. Be patient and they will figure out whats wrong with you. Thats why they get paid the BIG bucks.. I do feel for you tho. Keep us updated..
You think Dr.'s don't order test's because of cost..I totally disagree!! Why do we pay for medical insurance. or pay out of our pocket because we can't afford insurance. Or those who can't afford insurance and die needlessly. I am extremely grateful that I have excellent insurance but my employer pays 8,563 dollars a month, I pay nothing. I work for a world class areospace company.
I am 15 days post op for PT and biospy ( large calicfied tumor DR. said it was hard as bone) discovered I have Hashimoto's and probably have had it for years and years. My other half of thyroid is not working and I have to wait two months well 6 weeks now before they will even test my blood. I wasn't happy but understand after it was explained to me that I have stored hormones in my body. Feeling YUK everyday now. Use to have good and bad days. All my other TSH were in the normal range. I have felt like **** for many years but never knew what was wrong. Actually didn't even go to the Dr. except for yearly visit.. Just thought because I was getting older I was falling apart see what self diagnosis got me. I could have been diagnosed years ago..:)
danie17075rm, Hang in there and keep telling the Dr. your symptoms. Be patient and they will figure out whats wrong with you. Thats why they get paid the BIG bucks.. I do feel for you tho. Keep us updated..
Even though many words were put in my mouth, I am not knocking anyone's illness or treatment. This is between you and your doctor. The issue turned debate was, TSH level -
to which was taken personally, out of contex and reality.
This might not be in the best of wordings, but I give it my best shot.
Doctors can tell autoimmune by levels in how they relate to each other and their direction in the Labs reference range.
Levels in how they relate to each other tell the doctor if the patients problem is:
late Hashi; early Hashi; Graves'; hyperthyroidism; T3 toxicosis/early hyperthyroidism; subclinical/ mild hypothyrodisim; overt hypothyroidism; hypothyroidism due to surgery (removal of thyroid) as a primary cause; hypothyrodism due to low pituitary function; excess T4 ingestion; sick euthyroid syndrome, sick euthyroid syndrome; adrenal fatigue; allergies/hormonal imbalance/yeast/; poor mitochoncrial, generalized ill health, conversion problems; chronic infection; even when taking dessicated thyroid such as Armour, as well as T4/T3 mixture as thyrolar, slow release T3 compound, pure fast release T-3 such as cytomel; etc., etc., and etc. Show up in levels, if there is a problem.
They all relate to each other in a different manner per their specific thyroid disorder.
Then antibodies are done to confirm what the levels relate, if your doctors needs the confirmation. if Labs are questionable s/he'll probably repeat thyroid test and if they state as before, then doctor might do antibodies. However, if s/he is confident in what s/he is doing, s/he will not need antibodies to confirm.
Its just not a matter of "my TSH is out and I need antibodies done." Or
"I'm not feeling well and have all the symptoms there is and I need antibodies be done." Or "I have all the symptoms there is and I must be hypo". Hey guess what, your levels already states what you and your thyroid are.
Its a matter on how all three levels relate to each other. i.e. all three together tells the thyroid story, of your thyroid disorder, and, more. Symptoms and Antibodies are only confirmation and most of the time, unnecessary and an extra added expense.
GL
to which was taken personally, out of contex and reality.
This might not be in the best of wordings, but I give it my best shot.
Doctors can tell autoimmune by levels in how they relate to each other and their direction in the Labs reference range.
Levels in how they relate to each other tell the doctor if the patients problem is:
late Hashi; early Hashi; Graves'; hyperthyroidism; T3 toxicosis/early hyperthyroidism; subclinical/ mild hypothyrodisim; overt hypothyroidism; hypothyroidism due to surgery (removal of thyroid) as a primary cause; hypothyrodism due to low pituitary function; excess T4 ingestion; sick euthyroid syndrome, sick euthyroid syndrome; adrenal fatigue; allergies/hormonal imbalance/yeast/; poor mitochoncrial, generalized ill health, conversion problems; chronic infection; even when taking dessicated thyroid such as Armour, as well as T4/T3 mixture as thyrolar, slow release T3 compound, pure fast release T-3 such as cytomel; etc., etc., and etc. Show up in levels, if there is a problem.
They all relate to each other in a different manner per their specific thyroid disorder.
Then antibodies are done to confirm what the levels relate, if your doctors needs the confirmation. if Labs are questionable s/he'll probably repeat thyroid test and if they state as before, then doctor might do antibodies. However, if s/he is confident in what s/he is doing, s/he will not need antibodies to confirm.
Its just not a matter of "my TSH is out and I need antibodies done." Or
"I'm not feeling well and have all the symptoms there is and I need antibodies be done." Or "I have all the symptoms there is and I must be hypo". Hey guess what, your levels already states what you and your thyroid are.
Its a matter on how all three levels relate to each other. i.e. all three together tells the thyroid story, of your thyroid disorder, and, more. Symptoms and Antibodies are only confirmation and most of the time, unnecessary and an extra added expense.
GL
It all makes sense. I wouldn't be pushing for anything, I just know there is a correlation to my enlarged thyroid and my symptoms. Otherwise, I would think it was something else. Also, I consumed soy heavily for many years (until I recently found out it was bad). I think this has caused my problems. The only test that came out questionable was my thyroid, and even my doctor noted that. She agrees that my thyroid, or whatever is in my neck is causing the symptoms. I just wanted to know if other people had symptoms at this level of tsh since it is so controversial. Or if any of you had a goiter or nodule with symptoms? I'm not giving myself a diagnosis, I just have to trust my intuition to some extent. I just want my antibodies tested because every other avenue has been pursued. I will not push that until they confirm what is in my neck however. Does anyone have experience with goiters? Does your neck enlage on both sides? I appreciate all the info here, and do not want to step on anyone's toes. I just want to know if it is a possibility to feel horrid at these levels.
I had a mild goiter with my 2 nodules ... all tests were within normal and I mean all of them .. the endo took ELEVEN yes, 11, vials of blood!!!!! No symptoms in my neck. Some hypo symptoms at 2.4 TSH that improved now that I am at the 1.1 goal.
Yes, there are hormone "stores" but mine went empty at about the 3 week mark when I was already on Synthroid and they were rising ... I had my first TSH taken at about 2 weeks post op and then about a week later or maybe 10 days later and they increased the Synthroid pretty fast and then leveled off to every 4 weeks. My other half was not functioning either which was a surprise to us all.
C~
Yes, there are hormone "stores" but mine went empty at about the 3 week mark when I was already on Synthroid and they were rising ... I had my first TSH taken at about 2 weeks post op and then about a week later or maybe 10 days later and they increased the Synthroid pretty fast and then leveled off to every 4 weeks. My other half was not functioning either which was a surprise to us all.
C~
I thought my 6 vials of blood was bad. I'm so afraid for the ultrasound. I wish I could say that my TSH levels were so high, and that may be what is causing my enlarged thyroid, but I can't. It's scary to not know what is in there. I just have to keep praying that it is nothing bad. I looked back at some old pics, and I think I noticed swelling even then.
1st to GL everything you have said is absolutely valid as always. You as always are the lab lady :).
2nd to danie...yes, it is possible to feel bad at any level. What is optimal for one person is not necessarily optimal for another.
That said...let me go on to say that you need to continue to explore the diagnosis process with your doctor to eliminate all other possiblilities. I can see that you are well on the way to that end. When your doc feels it is necessary for further screening with the antibody testing I am sure he/she will order those tests for you.
Unfortunately the diagnostic process is sometimes frustrating for the patient. I am one of those for whom it has been frustrating. I have Hashimoto's , an autoimmune thyroid disease. I had a rather large nodule that was causing compression problems and had a left lobectomy in Feb. I am subclinically hypo in that I have some hypo symptoms, but I am not on thyroid replacement hormones yet. My current TSH as of 2 weeks ago is still under 2.5, the point at which my endo will start treatment even for patients with diagnoses of Hashi's. I sometimes get frustrated with that, but you know, it is ok. I understand her reasoning and in the long run it is better for me. The right lobe is still functioning somewhat normally. Is it getting less efficient? yes it is. will it stop working altogether? eventually. That is what happens with Hashi's. I have to live with that. So whenever I need the replacement hormones, that is when she will prescribe them and not before. My symptoms may or may not be caused by the rise in the TSH. I also have other autoimmune problems which may be contributing to my not feeling optimal. I have Pernicious Anemia which sometimes goes hand in hand with Hashi's...this certainly contributes to my fatigue...as well as some other issues that I will go into here....but to let you know....I am sure your doctor is following protocol and trying to give you the best treatment available. BUT if at any point you do not feel that is the case, do not hesitate to "fire" him or her and consult another physician.
I am sorry if I rambled...I hope you find some crumbs in there that may help you.
and again to GL...we all appreciate everything you do here
Kathy
2nd to danie...yes, it is possible to feel bad at any level. What is optimal for one person is not necessarily optimal for another.
That said...let me go on to say that you need to continue to explore the diagnosis process with your doctor to eliminate all other possiblilities. I can see that you are well on the way to that end. When your doc feels it is necessary for further screening with the antibody testing I am sure he/she will order those tests for you.
Unfortunately the diagnostic process is sometimes frustrating for the patient. I am one of those for whom it has been frustrating. I have Hashimoto's , an autoimmune thyroid disease. I had a rather large nodule that was causing compression problems and had a left lobectomy in Feb. I am subclinically hypo in that I have some hypo symptoms, but I am not on thyroid replacement hormones yet. My current TSH as of 2 weeks ago is still under 2.5, the point at which my endo will start treatment even for patients with diagnoses of Hashi's. I sometimes get frustrated with that, but you know, it is ok. I understand her reasoning and in the long run it is better for me. The right lobe is still functioning somewhat normally. Is it getting less efficient? yes it is. will it stop working altogether? eventually. That is what happens with Hashi's. I have to live with that. So whenever I need the replacement hormones, that is when she will prescribe them and not before. My symptoms may or may not be caused by the rise in the TSH. I also have other autoimmune problems which may be contributing to my not feeling optimal. I have Pernicious Anemia which sometimes goes hand in hand with Hashi's...this certainly contributes to my fatigue...as well as some other issues that I will go into here....but to let you know....I am sure your doctor is following protocol and trying to give you the best treatment available. BUT if at any point you do not feel that is the case, do not hesitate to "fire" him or her and consult another physician.
I am sorry if I rambled...I hope you find some crumbs in there that may help you.
and again to GL...we all appreciate everything you do here
Kathy
Ah I understand now Australia. I live in the states but I have lived in Canada where the medical is a lot like yours. People die from cancer there because depending on what it is..there is a waiting list of sorts. There was huge debate about that when I was living there, because the provience I was living in didn't allow people to go to another provience for treatment unless they paid out of pocket. I can totally agree and understand now ( GL your great at explaining) that an antibody test is something they would do after diagnosis and just part of the confusing puzzle of the cursed thyroid.
The thing that has stuck with me since Dr. diagnosed me with Hashimoto's on 5-31-07 is he said we don't know what causes the immune system to attack the thyroid. One I was happy he was honest. Two I find it rather amazing that here we are in the 21st century and nobody has figured out why the little ole thyroid goes wacky. I wish I had a Dr. in the family to study the thyroid.:)
Artsyrose.. Oh my goodness. You gave me a clear picture to what I will be facing. I had my left lobe removed 5-23-07 and diagnosed with Hashimoto. Same as you large calcified nodule. I have many many symptoms for years. I have always had normal blood work over the years. I have done research and I printed just one Dr's opinion. he is talking in general too that must be taken in consideration. He does go on to say that treating the Hashi with meds that the thyroid will soon stop working as it will have no need to it's work. he says by taking meds we are tricking the pitutiary gland in the brain into believing that thyroid is working normally. he says once the thyroid stops working, it will sort of fall off the radar screen of the immune system and it will no longer send antibodies to attack the thyroid gland. Here is the link. I found it very interesting and wish it was that easy. http://www.thyroidcancer.com/hashimotos_thyroiditis.htm
This is a wonderful forum and I thank my lucky stars I have a place to go to talk and people actually understand what I am going threw. I don't feel crazy anymore.. What a relief that was.. lol.. Peace..Love.. and Joy to you ALL!!!
Jean
The thing that has stuck with me since Dr. diagnosed me with Hashimoto's on 5-31-07 is he said we don't know what causes the immune system to attack the thyroid. One I was happy he was honest. Two I find it rather amazing that here we are in the 21st century and nobody has figured out why the little ole thyroid goes wacky. I wish I had a Dr. in the family to study the thyroid.:)
Artsyrose.. Oh my goodness. You gave me a clear picture to what I will be facing. I had my left lobe removed 5-23-07 and diagnosed with Hashimoto. Same as you large calcified nodule. I have many many symptoms for years. I have always had normal blood work over the years. I have done research and I printed just one Dr's opinion. he is talking in general too that must be taken in consideration. He does go on to say that treating the Hashi with meds that the thyroid will soon stop working as it will have no need to it's work. he says by taking meds we are tricking the pitutiary gland in the brain into believing that thyroid is working normally. he says once the thyroid stops working, it will sort of fall off the radar screen of the immune system and it will no longer send antibodies to attack the thyroid gland. Here is the link. I found it very interesting and wish it was that easy. http://www.thyroidcancer.com/hashimotos_thyroiditis.htm
This is a wonderful forum and I thank my lucky stars I have a place to go to talk and people actually understand what I am going threw. I don't feel crazy anymore.. What a relief that was.. lol.. Peace..Love.. and Joy to you ALL!!!
Jean
that's ****. find a new doctor to write up the labwork request. there's no reason why your doctor can't order that! your doc sounds like the PCP i mentioned above....
Hi Danielle,
Look - the lady who disagrees with you has more years of experience with thyroid problems than anyone would like to have. So she has a different opinion to you - so what? It doesn't make any difference to you. Don't attack her for it - we are all entitled to an opinion - as are you. We are here to help each other - NOT hinder AND by offering a different opinion we are not trying to 'hinder' you BUT share years of experience and knowledge gained along the way. It's up to you - you can take it or leave it - but don't bite someone's head off for offering.
Once source of confusion seems to be this; The reference range for optimal treatment of thyroid disorders is quite different to the diagnostic range.
What I mean is if you were on total thyroid replacement then 3,79 would not be ideal replacement,
For someone who does not have a thyroid disorder a result of 3.79 is within the 'normal' range. So far you haven't been officially diagnosed with a thyroid disorder (except by yourself) - it is possible that the swelling in your neck has other causes such as lymph node involvement. The ultrasound scan on Monday will reveal all - and you may well say 'I told you so' BUT at the moment you can't see through skin and no one can say with certainty exactly what is going on. Even if you have a goitre - normally you wouldn't be treated by meds just yet.
Just remember people get TSH results of 15.5, 48, 37, 102 (and even higher) for example - no dispute - these people definately have a thyroid disorder. At the moment your results fall withing the 'black' for someone who does not already have a diagnosed thyroid disorder. By questioning this it is like saying "It should be blacker than black" - it is unlikely that you would get benefit from the tiny reduction it would take to bring your TSH under 3.0 as you belive should be 'normal'.
Even if you used the 0.3 - 3.0 reference range you are so close to it. 0.79 is not much of a difference - do you get what I'm saying?
If you have thyroiditis (a temporary condition that ususally resolves in 12 months give or take) they will not treat you with a TSH of 3.79
If you have a multinodular goitre or a simple goitre - it is highly unlikely you will be treated with medication until your labs go way out of range. I know this only too well after being observed for 10 years but no doctor willing to do anything with my labs which always fell withing the 'normal' range. Surgery for compression is not affected by what your labs are doing.
Even if you have a goitre, statistically it is not likely to be causing any problem with function - it is more likely that some other problem is causing your other symptoms like fatigue (compression symptoms obviously associated with swelling in neck -not yet diagnosed).
Maybe the ACCE has changed it's guidelines BUT as you'd be aware these guidelines have not been adopted universally by every doctor or lab. In fact I believe that the doctors who are using the new guidelines may be in the minority. You are not going to change this by yourself - and don't think that you can necessarily change your doctor's mind on this one. Think for a minute about how many patients that doctors see who have a internet diagnosis - yeah some might be right but it would be the majority.
REMEMBER IT IS STILL POSSIBLE THAT SOMETHING ELSE ENTIRELY IS CAUSING THE OTHER SYMPTOMS SUCH AS FATIGUE THAT YOU DESCRIBED ON OTHER POSTS.
I really think that you could be setting youself up for some very frustrating experiences with doctors by deciding that it is definately your thyroid that is causing your problems before getting a definative diagnosis. Your symptoms might match but so do the symptoms of many other disorders and defiency; iron anaemia, pernicious anaemia, cushings disorder, addisons disease - the list goes on and on and on.
Let the doctor steer your diagnosis. It is all well and good to have a feeling that it MAY be your thyroid - but be prepared that the doctor will and should do multiple tests for many other things to rule out potential differential diagnosis. My advice is to keep your thoughts to yourself when seeing your doctor until you have some solid evidence for a diagnosis.
It is a REALLY frustrating experience when something is wrong healthwise and you know it - the doctor probably knows it too - but is also just as frustrated by not having ordered the right tests to show clearly what is going on. Hang in there - it can be a rocky road, no matter what the final diagnosis is.
I have a really busy day today but I will look back here this evening.
Take it easy and don't stress to much - wait and see what your ultrasound scan reveals.
~Jen
Look - the lady who disagrees with you has more years of experience with thyroid problems than anyone would like to have. So she has a different opinion to you - so what? It doesn't make any difference to you. Don't attack her for it - we are all entitled to an opinion - as are you. We are here to help each other - NOT hinder AND by offering a different opinion we are not trying to 'hinder' you BUT share years of experience and knowledge gained along the way. It's up to you - you can take it or leave it - but don't bite someone's head off for offering.
Once source of confusion seems to be this; The reference range for optimal treatment of thyroid disorders is quite different to the diagnostic range.
What I mean is if you were on total thyroid replacement then 3,79 would not be ideal replacement,
For someone who does not have a thyroid disorder a result of 3.79 is within the 'normal' range. So far you haven't been officially diagnosed with a thyroid disorder (except by yourself) - it is possible that the swelling in your neck has other causes such as lymph node involvement. The ultrasound scan on Monday will reveal all - and you may well say 'I told you so' BUT at the moment you can't see through skin and no one can say with certainty exactly what is going on. Even if you have a goitre - normally you wouldn't be treated by meds just yet.
Just remember people get TSH results of 15.5, 48, 37, 102 (and even higher) for example - no dispute - these people definately have a thyroid disorder. At the moment your results fall withing the 'black' for someone who does not already have a diagnosed thyroid disorder. By questioning this it is like saying "It should be blacker than black" - it is unlikely that you would get benefit from the tiny reduction it would take to bring your TSH under 3.0 as you belive should be 'normal'.
Even if you used the 0.3 - 3.0 reference range you are so close to it. 0.79 is not much of a difference - do you get what I'm saying?
If you have thyroiditis (a temporary condition that ususally resolves in 12 months give or take) they will not treat you with a TSH of 3.79
If you have a multinodular goitre or a simple goitre - it is highly unlikely you will be treated with medication until your labs go way out of range. I know this only too well after being observed for 10 years but no doctor willing to do anything with my labs which always fell withing the 'normal' range. Surgery for compression is not affected by what your labs are doing.
Even if you have a goitre, statistically it is not likely to be causing any problem with function - it is more likely that some other problem is causing your other symptoms like fatigue (compression symptoms obviously associated with swelling in neck -not yet diagnosed).
Maybe the ACCE has changed it's guidelines BUT as you'd be aware these guidelines have not been adopted universally by every doctor or lab. In fact I believe that the doctors who are using the new guidelines may be in the minority. You are not going to change this by yourself - and don't think that you can necessarily change your doctor's mind on this one. Think for a minute about how many patients that doctors see who have a internet diagnosis - yeah some might be right but it would be the majority.
REMEMBER IT IS STILL POSSIBLE THAT SOMETHING ELSE ENTIRELY IS CAUSING THE OTHER SYMPTOMS SUCH AS FATIGUE THAT YOU DESCRIBED ON OTHER POSTS.
I really think that you could be setting youself up for some very frustrating experiences with doctors by deciding that it is definately your thyroid that is causing your problems before getting a definative diagnosis. Your symptoms might match but so do the symptoms of many other disorders and defiency; iron anaemia, pernicious anaemia, cushings disorder, addisons disease - the list goes on and on and on.
Let the doctor steer your diagnosis. It is all well and good to have a feeling that it MAY be your thyroid - but be prepared that the doctor will and should do multiple tests for many other things to rule out potential differential diagnosis. My advice is to keep your thoughts to yourself when seeing your doctor until you have some solid evidence for a diagnosis.
It is a REALLY frustrating experience when something is wrong healthwise and you know it - the doctor probably knows it too - but is also just as frustrated by not having ordered the right tests to show clearly what is going on. Hang in there - it can be a rocky road, no matter what the final diagnosis is.
I have a really busy day today but I will look back here this evening.
Take it easy and don't stress to much - wait and see what your ultrasound scan reveals.
~Jen
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