Aa
Getting ready to give up
4 months ago my GP sent me to see a surgeon cause my thyroid is swollen. The surgeon did an ultrasound (I had already had an iodine uptake (?) thing done ... sorry ... brain not working today) and my thyroid is just swollen ... no nodules or anything. He put me on synthroid and gave me paperwork to have more labs done in 4 months and an appt to come back to see him. I discussed with him the necessity of having a FREE T3 and FREE T4 and not just a T3 and T4. He agreed.
Anyways, today was my return appt. Would you believe I was only tested for TSH and T4? They also did a WBC because when I went to pick up my paperwork for the lab (I had asked them to keep it knowing I would lose it in 4 months time) I had another bad earache so I wanted a White blood count done and the nurse added it to the paperwork). I can't believe it. I am so angry right now ... and so depressed ... I just can't stand it! I am so tired of hick doctors!
My results:
WBC 12.3 (4.0-11.7)
T4 10.1 (4.5-12)
TSH 3.99 (0.27-4.2)
So, the surgeon did another ultrasound and said my thyroid was swollen but looks fine. He said he will send the labs to my GP and let him know he has ruled out the thyroid as being my problem.
So, I guess I am now back to square one and no diagnosis. Actually ... worse ... 20 or more different diagnosis! My blood pressure when I first got to the surgeons office was 170/102 I bet it was a lot worse by the time I left! I ended up bawling in the exam room and left out the back door so the other patients wouldn't see me.
Although I fit nearly every symptom of hypothyroidism my labs say otherwise. ??? I know, I know ... it could be MS especially with all the muscle probs I have and the very swollen eyelids ... but I don't think they have ever tested for that and to be honest ... not sure I would trust them anyways.
Now I am hoping this thing will actually post after it has taken me so long to write it (I had to stop twice to vomit ... prob just from being so upset).
I am tired, I am in a lot of pain, and I am cranky as heck. Thanks for letting me vent. Anyone else here feel like you just wish you could die and get it over with?
Anyways, today was my return appt. Would you believe I was only tested for TSH and T4? They also did a WBC because when I went to pick up my paperwork for the lab (I had asked them to keep it knowing I would lose it in 4 months time) I had another bad earache so I wanted a White blood count done and the nurse added it to the paperwork). I can't believe it. I am so angry right now ... and so depressed ... I just can't stand it! I am so tired of hick doctors!
My results:
WBC 12.3 (4.0-11.7)
T4 10.1 (4.5-12)
TSH 3.99 (0.27-4.2)
So, the surgeon did another ultrasound and said my thyroid was swollen but looks fine. He said he will send the labs to my GP and let him know he has ruled out the thyroid as being my problem.
So, I guess I am now back to square one and no diagnosis. Actually ... worse ... 20 or more different diagnosis! My blood pressure when I first got to the surgeons office was 170/102 I bet it was a lot worse by the time I left! I ended up bawling in the exam room and left out the back door so the other patients wouldn't see me.
Although I fit nearly every symptom of hypothyroidism my labs say otherwise. ??? I know, I know ... it could be MS especially with all the muscle probs I have and the very swollen eyelids ... but I don't think they have ever tested for that and to be honest ... not sure I would trust them anyways.
Now I am hoping this thing will actually post after it has taken me so long to write it (I had to stop twice to vomit ... prob just from being so upset).
I am tired, I am in a lot of pain, and I am cranky as heck. Thanks for letting me vent. Anyone else here feel like you just wish you could die and get it over with?
I am curious what kind of help you get for your eye disease?
Did the TT help at all? How long have you had eye issues? Are there meds. for this?
My eyes have been a little weird recently. Like there is a pulsating sensation---mild not strong---on my lids.
What a stressful condition! Thanks..
Did the TT help at all? How long have you had eye issues? Are there meds. for this?
My eyes have been a little weird recently. Like there is a pulsating sensation---mild not strong---on my lids.
What a stressful condition! Thanks..
You asked why a TT when my levels had evened out? The recommendation for Tapazole is to use it for up to a year to see if remission of Graves disease can be achieved - it happens sometimes, but often does not. Further, Tapazole has some rare occurance of side effects on the liver and the ability to fight infections, so it isn't viable long term under conventional medical wisdom.
The alternate treatments are RAI (treatment with radioactive iodine) and thyroidectomy. I looked at it two ways - I didn't feel like RAI was for me, and it would get me to the same place as TT. Either way I would be taking replacement thyroid hormone for the rest of my life. Also, I have Graves Eye Disease, and RAI is at least anectodatly linked to worsening of the eye symptoms - as my doctor said, if it is true and you do RAI, it can't be undone. TT seemed less risky for my situation.
The alternate treatments are RAI (treatment with radioactive iodine) and thyroidectomy. I looked at it two ways - I didn't feel like RAI was for me, and it would get me to the same place as TT. Either way I would be taking replacement thyroid hormone for the rest of my life. Also, I have Graves Eye Disease, and RAI is at least anectodatly linked to worsening of the eye symptoms - as my doctor said, if it is true and you do RAI, it can't be undone. TT seemed less risky for my situation.
I honestly don't. I know that B vitamins and Vitamin C are important for keeping our immune systems strong and help our body be able to deal with stress. So I think they're good to take. There is a book that other people have recommended "The Thyroid Diet" by Mary Shomonon (or something like that). I really didn't bother with a diet when I was hyper because I was dropping weight despite eating a whole bunch :-)
Thanks-- helpful info as my GP hasn't much of a clue about Grave's, but she is referring me to an endo.MD.
In the meantime, does anyone know of supplemental (to Tapazole) therapy...vitamins, herbs, diet??
Mary
In the meantime, does anyone know of supplemental (to Tapazole) therapy...vitamins, herbs, diet??
Mary
To Moonchild - Darn my fingers. I meant to type "it is *not* uncommon to have..." Where do you live? One of us may be able to give you a referral to an endo we trust.
To Greenroad - Welcome to the forum. And I agree with everything tm514 said. I had multinodular goiter causing subclinical hyperthyroidism w/ underlying Grave's; at times my tsh was as low as yours or even undetectable. I finally had my TT when I came out of remission (it had gone into remission after 1 year on tapazole) and by then my goiter was visible to even a non-medical person. It took me a couple of months for my tsh to get "normal" while on tapazole and even the second time around I was only put on 5mg so I was still slightly hyper by the time I had the surgery. Some people get the TT despite being on a therapeutic dose of tapazole for the reason I did - nodules or a goiter that has gotten really large and it causing problems (mine was pushing on my airway when I slept and was pushing it to the side when I was upright); others do it because they're diagnosed with thyroid cancer; still others do it because they have a combination of 2 autoimmune disorders (both hashimoto's and grave's) which causes their tsh to swing wildly and makes it difficult to find the correct medication dose. I hope this answers some of your questions and again, welcome to the board.
To Greenroad - Welcome to the forum. And I agree with everything tm514 said. I had multinodular goiter causing subclinical hyperthyroidism w/ underlying Grave's; at times my tsh was as low as yours or even undetectable. I finally had my TT when I came out of remission (it had gone into remission after 1 year on tapazole) and by then my goiter was visible to even a non-medical person. It took me a couple of months for my tsh to get "normal" while on tapazole and even the second time around I was only put on 5mg so I was still slightly hyper by the time I had the surgery. Some people get the TT despite being on a therapeutic dose of tapazole for the reason I did - nodules or a goiter that has gotten really large and it causing problems (mine was pushing on my airway when I slept and was pushing it to the side when I was upright); others do it because they're diagnosed with thyroid cancer; still others do it because they have a combination of 2 autoimmune disorders (both hashimoto's and grave's) which causes their tsh to swing wildly and makes it difficult to find the correct medication dose. I hope this answers some of your questions and again, welcome to the board.
Thanks very much for your insightful comments. I'll learn in a couple of days about the antibody test for GD. I think I have it.
I wonder why you had to have a TT when your levels evened out? Also, what were your symtoms initially which made you feel something was wrong?
Thanks, I'm glad I've joined this blog.
I wonder why you had to have a TT when your levels evened out? Also, what were your symtoms initially which made you feel something was wrong?
Thanks, I'm glad I've joined this blog.
Welcome,
To answer your questions: Not all hyperthyroid disease is Graves disease, but Graves is the most common cause of hyperthyroidism. Graves is an autoimmune disease in which your body starts manufacturing antibodies that attack the thyroid, causing it to overproduce thyroid hormones, which end up supressing the TSH levels. The antibody test will be able to let you know if you have the antibodies that cause Graves (they have a name, but I can't keep them straight from the antibodies that cause hypothyroid disease).
As far as the dosage goes, it is hard to say what is enough for you. It likely depends on your body size and how out of whack your levels are in the grand scheme of things. I was started on a much higher dose, but my TSH was non-existent and my T4 and T3 levels were "impressive" according to the doctor. I was tapered off to about 10 mg after about a month, then was on an alternating dose of 5 mg one day and 10 mg the next day until I chose Total Thyroidectomy as a permanent fix. I remember it taking about a month to feel better, but I had been so sick and had ignored symptoms for months, I could barely remember what feeling good was like. While you want to feel better in a hurry, you don't want to go hypothyroid, that will just cause a whole bunch of different problems.
Just as an aside - if you do turn out to have Graves, pay attention to changes in your eyes, for there are another type of anitbodies associated with Graves that cause eye problems - not terribly common, I think it occurs in about 5% of Graves patients, but I had absolutely no clue. I thought the first eye problems were allergies - lots of tearing and a constant "gritty" feel. If you have symptoms like this, make sure you get referred to an ophthalmologist who treats Graves Eye disease. I don't mean to scare you, but I would have fared better had I had the slightest clue that my eye problems were not just allergies. I had never heard of Graves Disease or Graves Eye disease until I was diagnosed. Talk about surprised!
Good luck with your treatment.
To answer your questions: Not all hyperthyroid disease is Graves disease, but Graves is the most common cause of hyperthyroidism. Graves is an autoimmune disease in which your body starts manufacturing antibodies that attack the thyroid, causing it to overproduce thyroid hormones, which end up supressing the TSH levels. The antibody test will be able to let you know if you have the antibodies that cause Graves (they have a name, but I can't keep them straight from the antibodies that cause hypothyroid disease).
As far as the dosage goes, it is hard to say what is enough for you. It likely depends on your body size and how out of whack your levels are in the grand scheme of things. I was started on a much higher dose, but my TSH was non-existent and my T4 and T3 levels were "impressive" according to the doctor. I was tapered off to about 10 mg after about a month, then was on an alternating dose of 5 mg one day and 10 mg the next day until I chose Total Thyroidectomy as a permanent fix. I remember it taking about a month to feel better, but I had been so sick and had ignored symptoms for months, I could barely remember what feeling good was like. While you want to feel better in a hurry, you don't want to go hypothyroid, that will just cause a whole bunch of different problems.
Just as an aside - if you do turn out to have Graves, pay attention to changes in your eyes, for there are another type of anitbodies associated with Graves that cause eye problems - not terribly common, I think it occurs in about 5% of Graves patients, but I had absolutely no clue. I thought the first eye problems were allergies - lots of tearing and a constant "gritty" feel. If you have symptoms like this, make sure you get referred to an ophthalmologist who treats Graves Eye disease. I don't mean to scare you, but I would have fared better had I had the slightest clue that my eye problems were not just allergies. I had never heard of Graves Disease or Graves Eye disease until I was diagnosed. Talk about surprised!
Good luck with your treatment.
Hello, I am new here but would appreciate anyone's feedback!
I just got my thyroid tests back, as I have been feeling ill for over 2 weeks now and my TSH is .001 and freeT4 =14. Results point to hyperthyroidism, and doc has just ordered more tests for antibodies to Grave's.
She has put me on Tapizole 15mg day. Just started today.
Question #1 Don't my above numbers mean I have Grave's? If so, why an "antibodies" test for it? What will latter test indicate that first test hasn't?
# 2 Do people think 15mg Tap. is sufficient dose to get my TSH level up?? How long do people think that will take?
Thanks so much for any input, I am very worried and feel really rotten.
Mary
I just got my thyroid tests back, as I have been feeling ill for over 2 weeks now and my TSH is .001 and freeT4 =14. Results point to hyperthyroidism, and doc has just ordered more tests for antibodies to Grave's.
She has put me on Tapizole 15mg day. Just started today.
Question #1 Don't my above numbers mean I have Grave's? If so, why an "antibodies" test for it? What will latter test indicate that first test hasn't?
# 2 Do people think 15mg Tap. is sufficient dose to get my TSH level up?? How long do people think that will take?
Thanks so much for any input, I am very worried and feel really rotten.
Mary
The first question I have is why you are seeing a surgeon and not an endocrinologist. Maybe I have missed that in your post but it seems to me that your GP should send you to an endo doctor and then he would send you out and interpret your lab results. In my case, the only time I saw a surgeon is when I was having my TT.
Thank you all for the support!
No, he didn't check for antibodies though he and I had discussed it and he said he would ... along with the FREE T3 and FREE T4 .. yet they didn't test for any of those. That is why I am so frustrated. The lab results above or what I got AFTER being on generic synthroid for 4 months. I am thankful at least that my GP believes in treating the patien and not just the labs so he put down I have subclinical hypothyroidism. Unfortuantely, through talking with online different people who have the same probs they said I most likely have Hashimoto's ... which we will never know if they never do the right tests.
rayneweather ... you said "But it is uncommon to have more than one autoimmune disorder at a time". ??? That is really confusing for me because I have been diagnosed with a lot of autoimmune disorders. Fibromyalgia, rheumatoid arthritis, Reynauds, Cold Urticaria, etc. See ... that is why I need a really good doctor.
DLA, I know ... you are right regarding "hick doctors". I know that but still felt like saying it ... needed to vent. LOL If it were the high priced city docs I was dealing with I am sure I would have been cursing "those danged over-priced, high falootin', know-it-all yet no-nothing, nose-in-their-books and not on their patients, city doctors". LOL
Well, I feel better emotionally today. Being able to come here and vent helps a lot. There was a time when I was quite suicidal ... and occasionally now ... like during the middle of a full blown migraine (the kind that make you vomit everytime an eyelash moves) ... that I still think about it. However, now I pray a lot and I think about all the good things I would have missed so far if I had been sucessful in my attempt years ago (such as my 4 wonderful g-babes) ... and I get through it.
I was so tired and sleepy yesterday after I posted here. I lay down and cried for about 2 hours ... due to the emotional wreck I was from all that above and because my legs ached so much I could barely stand it. When I woke up, I felt better though still a bit tearful. Today I am a LOT better.
Thank you all !!! My pity party is over and I feel Blessed to have rec'd comfort from you folks!
Lynn
No, he didn't check for antibodies though he and I had discussed it and he said he would ... along with the FREE T3 and FREE T4 .. yet they didn't test for any of those. That is why I am so frustrated. The lab results above or what I got AFTER being on generic synthroid for 4 months. I am thankful at least that my GP believes in treating the patien and not just the labs so he put down I have subclinical hypothyroidism. Unfortuantely, through talking with online different people who have the same probs they said I most likely have Hashimoto's ... which we will never know if they never do the right tests.
rayneweather ... you said "But it is uncommon to have more than one autoimmune disorder at a time". ??? That is really confusing for me because I have been diagnosed with a lot of autoimmune disorders. Fibromyalgia, rheumatoid arthritis, Reynauds, Cold Urticaria, etc. See ... that is why I need a really good doctor.
DLA, I know ... you are right regarding "hick doctors". I know that but still felt like saying it ... needed to vent. LOL If it were the high priced city docs I was dealing with I am sure I would have been cursing "those danged over-priced, high falootin', know-it-all yet no-nothing, nose-in-their-books and not on their patients, city doctors". LOL
Well, I feel better emotionally today. Being able to come here and vent helps a lot. There was a time when I was quite suicidal ... and occasionally now ... like during the middle of a full blown migraine (the kind that make you vomit everytime an eyelash moves) ... that I still think about it. However, now I pray a lot and I think about all the good things I would have missed so far if I had been sucessful in my attempt years ago (such as my 4 wonderful g-babes) ... and I get through it.
I was so tired and sleepy yesterday after I posted here. I lay down and cried for about 2 hours ... due to the emotional wreck I was from all that above and because my legs ached so much I could barely stand it. When I woke up, I felt better though still a bit tearful. Today I am a LOT better.
Thank you all !!! My pity party is over and I feel Blessed to have rec'd comfort from you folks!
Lynn
Have they checked your adrenal glands by any chance? My mother is having high blood pressure issues out of nowhere that her cardiologist is sure is related to the cyst she has in her adrenal glands (however, her endo swears her adrenals are fine and it's due to her cardiovascular system). But it is uncommon to have more than one autoimmune disorder at a time and there are several adrenal diseases that can cause high blood pressure. I hope you find a doctor soon that will listen to you.
Rayne
Rayne
Welcome to the board .. so sorry so much is going on right now. R U 3.99 on the synthroid or before you began the synthroid. With the range you noted you could easily be having subclinical hypo symptoms ... either starting Synthroid may help some or a higher dose will help them more ... let us know how you are doing.
Cheryl
Cheryl
Hang in there, we're here for you. We have almost all been down this road to some extent.
You can't always blame it on the "hick" drs. =) It was a hick dr who found my Graves before anyone else even suspected as much and now a hick endo who is finally getting me better, bit by bit. The big-time-city endo's that I went to and paid out the nose for their very expensive plaques on their walls were too busy and knew too much to have much use for me if I wouldn't just shut up and do as told. HAHA I don't do that! If I did I'd be in a heck of a mess now. ;)
There are days when all of us just feel useless and want to crawl under that rock and die, but we keep going and fighting and knowing that maybe some of our struggle will help someone else.
Anytime you need to vent or anything, just come here. Someone is always here.
I'm praying that God gives you the strength to get thru this.
Dac
You can't always blame it on the "hick" drs. =) It was a hick dr who found my Graves before anyone else even suspected as much and now a hick endo who is finally getting me better, bit by bit. The big-time-city endo's that I went to and paid out the nose for their very expensive plaques on their walls were too busy and knew too much to have much use for me if I wouldn't just shut up and do as told. HAHA I don't do that! If I did I'd be in a heck of a mess now. ;)
There are days when all of us just feel useless and want to crawl under that rock and die, but we keep going and fighting and knowing that maybe some of our struggle will help someone else.
Anytime you need to vent or anything, just come here. Someone is always here.
I'm praying that God gives you the strength to get thru this.
Dac
Suzie is right. Many of us have been where you are. I've been so tired and useless I just wanted it to crawl under a rock and die. But then I have a good day and I'm happy to be alive. You're just down temporarily. Tomorrow find another doctor. We're here for you.
Don't give up! Many of us on this forum (im a noobie) have faced this problem and have gone from doctor to doctor, year after year without relief. I have finally found a doctor that I feel good about. I am not really familiar with the numbers in your results but there are those here that will have information for you.
Did they check you for thyroid antibodies? My diagnosis was finally Hashimoto's Thyroiditis. Which means that my body was attacking and killing my thyroid as something "foreign". I had all the other symptoms as well as the late stage symptoms of tingling finger and face, swollen face and eyes...with my eyes feeling like they were going to bug out of my head. Keep talking until someone listens.
There are times that I have felt so bad that I thought I was going to die but never wanted to just get it over with. If you haven't already, read back on some of the posts here...you will get a new perspective on things...there are people on this forum that are facing cancer diagnosis and treatment as well as a multitude of other problems both physical and financial. There are problems dealing with bosses that aren't so understandable, to funny stories about dealing with toddlers who get out of hand. This is a great group of people and I think you will like all that you learn here.
Take care and let us know how it goes.
Suzie
Did they check you for thyroid antibodies? My diagnosis was finally Hashimoto's Thyroiditis. Which means that my body was attacking and killing my thyroid as something "foreign". I had all the other symptoms as well as the late stage symptoms of tingling finger and face, swollen face and eyes...with my eyes feeling like they were going to bug out of my head. Keep talking until someone listens.
There are times that I have felt so bad that I thought I was going to die but never wanted to just get it over with. If you haven't already, read back on some of the posts here...you will get a new perspective on things...there are people on this forum that are facing cancer diagnosis and treatment as well as a multitude of other problems both physical and financial. There are problems dealing with bosses that aren't so understandable, to funny stories about dealing with toddlers who get out of hand. This is a great group of people and I think you will like all that you learn here.
Take care and let us know how it goes.
Suzie
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