# Some advice please



## StaciB (Feb 4, 2010)

I have been on this board for about a month and it has helped me in the fact that I know I am not alone in my issues with thyroid disease and for this I am so thankful! 
However, (there is always a however) I am no closer to feeling better or finding a decent doctor. And to be honest over the past couple of weeks I have just given in, laid on the sofa, feeling awful and let life just pass by and really didn't care much about anything. I am so tired and depressed and have such bad brain fog I can't think! But then the other day I was half heartedly watching Oprah, she had on Roger Ebert. I had no idea he had pappilary thyroid cancer (in 2002), had his thyroid removed and was cancer free at the time , but later developed cancer in his salivary gland, which he had surgery and treatment for and later cancer in his jaw bone. He has lost his ability to speak, eat, drink and taste. While watching this I was crying and became so scared. Could this be me if I continue to do nothing?!
I have hypo, Hashi's and a large goiter. The last doctor I went to outright refused to do more then a TSH test. He said that was all that I needed for my treatment as far as he is concerned. The last ultrasound I had was six months ago, there were nodules, he said not cancerous, but can you tell from an ultrasound done in the doctor's office? I asked him to run a full blood panel, including Free T3 and Free T4 and a Thyroid Scan for my goiter...I was refused. I had to find out I had a very low iron count from my gastro doctor! I don't get it, I have insurance, he was paid, it costs him nothing to request these tests to make sure everything is really ok, that I am getting the right treatment and to ease my mind. I have called my family and gastro doctors asking for recommendations for other endos, I called the recommended drs and asked their receptionist/assistant/nurse questions about the doctors' style of treatment....I was laughed at, hung up on and yelled at! I am at my wits end! I don't have the money to keep "trying" different endos. And quite frankly I don't want to, I am freakin' tired!! 
My question.....what do I do? I know I can get blood work done myself, again, more money, but I know this is an option to get the blood work done to know what is up there, but I also read that if you have Hashi's then your other blood work is most likely inaccurate, true? 
Any thoughts would be greatly appreciated!!
Thanks!


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## Andros (Aug 26, 2009)

StaciB said:


> I have been on this board for about a month and it has helped me in the fact that I know I am not alone in my issues with thyroid disease and for this I am so thankful!
> However, (there is always a however) I am no closer to feeling better or finding a decent doctor. And to be honest over the past couple of weeks I have just given in, laid on the sofa, feeling awful and let life just pass by and really didn't care much about anything. I am so tired and depressed and have such bad brain fog I can't think! But then the other day I was half heartedly watching Oprah, she had on Roger Ebert. I had no idea he had pappilary thyroid cancer (in 2002), had his thyroid removed and was cancer free at the time , but later developed cancer in his salivary gland, which he had surgery and treatment for and later cancer in his jaw bone. He has lost his ability to speak, eat, drink and taste. While watching this I was crying and became so scared. Could this be me if I continue to do nothing?!
> I have hypo, Hashi's and a large goiter. The last doctor I went to outright refused to do more then a TSH test. He said that was all that I needed for my treatment as far as he is concerned. The last ultrasound I had was six months ago, there were nodules, he said not cancerous, but can you tell from an ultrasound done in the doctor's office? I asked him to run a full blood panel, including Free T3 and Free T4 and a Thyroid Scan for my goiter...I was refused. I had to find out I had a very low iron count from my gastro doctor! I don't get it, I have insurance, he was paid, it costs him nothing to request these tests to make sure everything is really ok, that I am getting the right treatment and to ease my mind. I have called my family and gastro doctors asking for recommendations for other endos, I called the recommended drs and asked their receptionist/assistant/nurse questions about the doctors' style of treatment....I was laughed at, hung up on and yelled at! I am at my wits end! I don't have the money to keep "trying" different endos. And quite frankly I don't want to, I am freakin' tired!!
> My question.....what do I do? I know I can get blood work done myself, again, more money, but I know this is an option to get the blood work done to know what is up there, but I also read that if you have Hashi's then your other blood work is most likely inaccurate, true?
> ...


Gee, Stacy!! You are such a sweet lady and I wish for you so badly to get the medical intervention you need.

You do not have to go to an endo. And you and I have discussed the possibility of cancer before.

If you can find the energy and the desire, please try to find a GP, DO, Rheumatologist (my choice) or even your ob/gyn to help you.

You need at the very least a radioactive uptake scan. We also talked about this,I believe.

From my end,I can only keep you in my prayers which I will do and try to help you best I can.

I never heard that about Hashi's. I did hear that Thyroglobulin Ab can sometimes be skewed by other antibodies.

A thyroglobulin antibody (TgAb) test is typically ordered along with the thyroglobulin test. Thyroglobulin antibodies are proteins produced by the body's immune system to attack thyroglobulin. These antibodies can develop at any time. When they are present, they bind to any thyroglobulin that may be present in the blood and interfere with the interpretation of the thyroglobulin test. Once they have developed, they will not go away and from that point forward will affect the usefulness of the thyroglobulin test.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html


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## StaciB (Feb 4, 2010)

Andros said:


> Gee, Stacy!! You are such a sweet lady and I wish for you so badly to get the medical intervention you need.
> 
> You do not have to go to an endo. And you and I have discussed the possibility of cancer before.
> 
> ...


Andros, Thank you for the response!! (once again) I tried using my GP, she will not treat for anything but general issues, she referred me to an endo. I called different rheumatogogists, and the soonest appointment I could get is for the second week in April. I didn't think of the ob/gyn, I will call there and see if she can help sooner. I am also waiting to speak to the wife of an aquaintance of my husband, she had thyroid cancer and had her thyroid removed. They live about an hour and a half from us, so maybe she can recommend her doctor. I (and my family) just cannot believe how bad the doctors are here in Miami, how the concern is really to do the minimum and to make sure they cover their rear ends! When I called my family doctor I had to speak to her literally thru her assistant, I would ask a question, her assistant would tell me to hold on, I could hear him ask the doctor my question and he would relay her answer, after 3 questions, I said to him, can the doctor come to the phone and speak to me directly? He was sorry but no. This whole situation is just madening! It is so hard to believe! I have already decided when I am feeling better I will be writing many letters to the Florida Medical License Board or whomever it is to tell them how things really are! I have not given up for good, I know I can't, it's not in me to do that, on good days I have been journaling, I want to write a book about my journey, about the effects of thyroid disease and Hashi's, weight gain/loss, nutrition and it's effect on thyroid disease, and how to find a decent doctors. I am hoping this will help someone who is where I am today get thru. All this can't be for nothing! 
I forget where I read the info about hashi's and the blood test, I will find and post it.
Thanks again!


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## Lovlkn (Dec 20, 2009)

StaciB,

What medication are you on and what is your dose?

Have you ever had your FT*4 and Ft*3 done?


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## StaciB (Feb 4, 2010)

Lovlkn said:


> StaciB,
> 
> What medication are you on and what is your dose?
> 
> Have you ever had your FT*4 and Ft*3 done?


I am currently taking Synthroid .125mcg.
My results were from last blood work, done in Sept. '09. 
FT4 result was 1.3 considered in the "normal" range
FT3 was 293, in "normal" range
TSH was 2.95, in "normal" range
Thyroid Peroxidase antibodies was just listed as >1000 
Thyroglobin Antibodies 37.
My total cholesterol was also high, 248, HDL at 52 and LDL at 165. I have never had high cholesterol and I now also have high BP, average around 140/90
Most recently, the endo I was using will only order a TSH test, which I have not gotten done. 
I used to be on a combo of Synthroid and Cytomel, my numbers were better, no high cholesterol or BP, I felt great and was about 40 lbs less!!


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## Andros (Aug 26, 2009)

StaciB said:


> I am currently taking Synthroid .125mcg.
> My results were from last blood work, done in Sept. '09.
> FT4 result was 1.3 considered in the "normal" range
> FT3 was 293, in "normal" range
> ...


So, why were you taken off the Cytomel? Also, you are way overdue for labs. At best, when one is "stabilized", labs should be done quarterly.

And thank you for all the above info. We do need the ranges so next time, please try to get hard copyies so you have the ranges also. Different labs use different ranges. Sadly, it would only be a guess w/o the ranges. Some things are obvious,of course. Your high TPO is one of them.


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## StaciB (Feb 4, 2010)

Andros said:


> So, why were you taken off the Cytomel? Also, you are way overdue for labs. At best, when one is "stabilized", labs should be done quarterly.
> 
> And thank you for all the above info. We do need the ranges so next time,try to get hard copys so you have the ranges also. Different labs use different ranges. Sadly, it would only be a guess w/o the ranges. Soem things are obvious,of course. Your high TPO is one of them.


I know I am overdue for labs, this is the "fight" I was going thru with the last endo, he wants to test only my TSH levels.
I do have a hard copy of my test results, it doesn't have specific ranges, it has the results listed in two columns, "in range" and "out of range" and for Thyroid Peroxidase Antibodies, out of range, expected <35. I used the ranges that I found at http://thyroid.about.com/library/howto/htthyroid*test.htm to interpret for myself. Do you think that's giving myself incorrect interpretations? I guess I have to contact the lab to see if they can tell me their specific ranges. I thought there was a universal range for these tests.

I moved to Miami about 2 years ago and the first endo I saw didn't believe in treating with both T3 and T4 and would not renew my Cytomel. And because my old doc was only licensed in PA, he couldn't write me a script to fill here on maintenance meds. And the other two endos I have seen also don't do dual therapy. Like I have said in a past post, I can get generic T3 online from a pharma in Europe w/o a script, I just don't know what the dosage would be.
Before moving I was taking .100mcg generic T4 and 25mcg generic T3 and feeling and looking great. Because of the BP issue I am alittle concerned about self medicating. I just want to feel good again! I busted my butt to look good in a bikini for the first time in my life, eating cleanly and working out like a woman possessed and now I am 40lbs heavier and feel like a tired mess ALLTHE TIME!! Sorry, just venting! :anim_03::anim_03:


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## Andros (Aug 26, 2009)

StaciB said:


> I know I am overdue for labs, this is the "fight" I was going thru with the last endo, he wants to test only my TSH levels.
> I do have a hard copy of my test results, it doesn't have specific ranges, it has the results listed in two columns, "in range" and "out of range" and for Thyroid Peroxidase Antibodies, out of range, expected <35. I used the ranges that I found at http://thyroid.about.com/library/howto/htthyroid*test.htm to interpret for myself. Do you think that's giving myself incorrect interpretations? I guess I have to contact the lab to see if they can tell me their specific ranges. I thought there was a universal range for these tests.
> 
> I moved to Miami about 2 years ago and the first endo I saw didn't believe in treating with both T3 and T4 and would not renew my Cytomel. And because my old doc was only licensed in PA, he couldn't write me a script to fill here on maintenance meds. And the other two endos I have seen also don't do dual therapy. Like I have said in a past post, I can get generic T3 online from a pharma in Europe w/o a script, I just don't know what the dosage would be.
> Before moving I was taking .100mcg generic T4 and 25mcg generic T3 and feeling and looking great. Because of the BP issue I am alittle concerned about self medicating. I just want to feel good again! I busted my butt to look good in a bikini for the first time in my life, eating cleanly and working out like a woman possessed and now I am 40lbs heavier and feel like a tired mess ALLTHE TIME!! Sorry, just venting! :anim_03::anim_03:


Sometimes you just have to vent and I feel your angst. It's okay; that is part and parcel of what we are here for . You have to have someone to talk to that understands.

You could find a GP, Internist, Rheumatologist (mine), DO .................to handle your meds, your labs and what not. You don't really need an endo. Most specialize in diabetes. Hope you can find someone to think outside the box on your behalf. I had a devil of a time w/ that here in Ga. as well. I don't convert;I need T3 for god's sakes!

No....................the lab ranges are not universal and the reason why is different labs use different methods. You would think something so vital and so important would be universal but it is not.

Sounds like you do also.

Lived in Broward Co. for years; hurricanes scared us out. Miss Florida.............a lot!


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