Comments on: The agonies of being thyroidless http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/ Thyroid Treatment Scandal and Hypothyroid Mistreatment Thu, 29 Jul 2010 14:02:28 -0600 http://wordpress.org/?v=2.9.2 hourly 1 By: Soni http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-54440 Soni Wed, 05 May 2010 06:02:32 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-54440 I was forced by my endo to have RAI done for graves disease almost 2 years ago. Since then ive been on Levothyroxine (T4) and have gained about 15kg. I work out every day with a trainer aswell as doing cardio by myself. I recently took a week off work doing exercise for 5 hours a day for 6 days and have managed to lose a total of zilch. I feel so frustrated and totally regret ever having done RAI. My doctors in the uk refuse to put me on anything but T4. I have now ordered Cytomel from an online website and was wondering if anyone here had experienced weight loss with this? I was forced by my endo to have RAI done for graves disease almost 2 years ago.
Since then ive been on Levothyroxine (T4) and have gained about 15kg.
I work out every day with a trainer aswell as doing cardio by myself. I recently took a week off work doing exercise for 5 hours a day for 6 days and have managed to lose a total of zilch. I feel so frustrated and totally regret ever having done RAI. My doctors in the uk refuse to put me on anything but T4. I have now ordered Cytomel from an online website and was wondering if anyone here had experienced weight loss with this?

]]> By: LindaD http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47537 LindaD Sat, 16 Jan 2010 15:42:05 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47537 Yes, TgAb is thyroglobulin antibodies. :-) If you are positive for TgAb, then your Tg will not be a reliable tumor marker for thyca. :-( Linda Yes, TgAb is thyroglobulin antibodies. :-)

If you are positive for TgAb, then your Tg will not be a reliable tumor marker for thyca. :-(
Linda

]]> By: Abigail http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47358 Abigail Tue, 12 Jan 2010 05:31:04 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47358 I have tested positive for TPO antibodies. I will request a TG antibodies on my next blood draw. Is that thyroglobulin antibodies? I have tested positive for TPO antibodies. I will request a TG antibodies on my next blood draw. Is that thyroglobulin antibodies?

]]> By: Linda http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47204 Linda Sat, 09 Jan 2010 04:23:20 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47204 Hi Abigail, Yes adrenals need to be supported well so you can tolerate the T3. Perhaps you need more HC? Are you on any of the support groups? www.stopthethyroidmadness.com/talk-to-others Since you are hypo now, it is the optimal time to check your Tg. A scan before a year out from a treatment dose of RAI has the potential to make you RAI resistant. A good radiologist will know that it can take up to a year for old cancer cells to die off. There is so much in that sentence that probably is not clear to you and it is hard to discuss in this format. Ask Janie for my email adress if you want to discuss this further. Hi Abigail,

Yes adrenals need to be supported well so you can tolerate the T3. Perhaps you need more HC? Are you on any of the support groups?
http://www.stopthethyroidmadness.com/talk-to-others
Since you are hypo now, it is the optimal time to check your Tg. A scan before a year out from a treatment dose of RAI has the potential to make you RAI resistant. A good radiologist will know that it can take up to a year for old cancer cells to die off. There is so much in that sentence that probably is not clear to you and it is hard to discuss in this format. Ask Janie for my email adress if you want to discuss this further.

]]> By: Alyce http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47154 Alyce Thu, 07 Jan 2010 17:40:36 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47154 Dear Abigail, Yes, It does get better over time. I had mine out at 24 and am now 42. I too HATE doing scans! They stress me out so much. I finally had to take an Ativan before hand because I would lie there on the table sobbing like a baby. I too find myself wanting to block out the whole cancer thing. I mostly focus on working toward feeling good. After being on Synthroid for 15 years and not knowing why I felt so bad. My brother in law told me about natural thyroid medications and it's been life-changing. I can't speak highly enough about how much better I feel on them. It's very important to find a doctor who is willing to make recommendations based on how you feel not just what your labs say. It took a long time to find her but it's been well worth it. With the help of a good doctor, I'm feeling on top of the world. Best of luck to you in the future. Dear Abigail,
Yes, It does get better over time. I had mine out at 24 and am now 42. I too HATE doing scans! They stress me out so much. I finally had to take an Ativan before hand because I would lie there on the table sobbing like a baby.

I too find myself wanting to block out the whole cancer thing. I mostly focus on working toward feeling good. After being on Synthroid for 15 years and not knowing why I felt so bad. My brother in law told me about natural thyroid medications and it’s been life-changing. I can’t speak highly enough about how much better I feel on them.

It’s very important to find a doctor who is willing to make recommendations based on how you feel not just what your labs say. It took a long time to find her but it’s been well worth it. With the help of a good doctor, I’m feeling on top of the world.

Best of luck to you in the future.

]]> By: Abigail http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47118 Abigail Wed, 06 Jan 2010 03:05:33 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47118 Linda, thank you for posting. My doc seems aggressive. Possibly because it was stage 3 cancer? He said that because of my young age I will get the most aggressive treatment so as to avoid recurrence. So I got one dose of 150 radioactive iodine in June 2009. I don't want to go for scans at all. I hate them. I hate thinking of thyroid cancer. I just want to get my energy back and move on. Has anyone ever felt 'back to normal' after removal of thyroid? Depends if adrenal fatigue is an issue? Linda, thank you for posting. My doc seems aggressive. Possibly because it was stage 3 cancer?
He said that because of my young age I will get the most aggressive treatment so as to avoid recurrence. So I got one dose of 150 radioactive iodine in June 2009.
I don’t want to go for scans at all. I hate them. I hate thinking of thyroid cancer. I just want to get my energy back and move on.

Has anyone ever felt ‘back to normal’ after removal of thyroid? Depends if adrenal fatigue is an issue?

]]> By: Linda http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47095 Linda Tue, 05 Jan 2010 06:37:14 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47095 Abigail, Since it has not been a year out from your RAI, a body scan will not tell you anything at this point. It can take up to a year for the old cancer cells to die off. What would be prudent however, is an unsuppressed (hypo) Tg with TgAb. If you have no antibodies and your Tg is not rising, that is good. I am a 44 year thyroid cancer survivor who never scanned more frequently than yearly. You are doing the right things. You can read more here: http://www.naturalthyroidchoices.com/ThyroidNutrients.html Abigail, Since it has not been a year out from your RAI, a body scan will not tell you anything at this point. It can take up to a year for the old cancer cells to die off. What would be prudent however, is an unsuppressed (hypo) Tg with TgAb. If you have no antibodies and your Tg is not rising, that is good. I am a 44 year thyroid cancer survivor who never scanned more frequently than yearly. You are doing the right things. You can read more here: http://www.naturalthyroidchoices.com/ThyroidNutrients.html

]]> By: Abigail http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47028 Abigail Sun, 03 Jan 2010 18:18:40 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47028 I also want to mention, when I was on synthroid, I had symptoms I used to have while on gluten. I checked out synthroid's ingredients and gluten was not listed. Yet my endo at the time said it does contain small amounts of gluten. He tested my blood for antigliadin antibodies and transglutaminase antibodies and indeed they were mildly elevated due to the small amount of gluten in the synthroid. So he gave me levoxyl instead. Same crap. A short time later I fired this endo for refusing to recognize my adrenal fatigue and for refusing to give me cytomel, and for telling me my bloodwork and ACTH were fine, when the laboratory personnel indicated my levels were NOT fine. I also want to mention, when I was on synthroid, I had symptoms I used to have while on gluten. I checked out synthroid’s ingredients and gluten was not listed. Yet my endo at the time said it does contain small amounts of gluten. He tested my blood for antigliadin antibodies and transglutaminase antibodies and indeed they were mildly elevated due to the small amount of gluten in the synthroid. So he gave me levoxyl instead. Same crap. A short time later I fired this endo for refusing to recognize my adrenal fatigue and for refusing to give me cytomel, and for telling me my bloodwork and ACTH were fine, when the laboratory personnel indicated my levels were NOT fine.

]]> By: Abigail http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-47027 Abigail Sun, 03 Jan 2010 18:05:41 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-47027 Thank you for the link to the blog! I had no clue there was an alternative to surgery for removal of metastisized thyroid cancer. What would have been the alternative? I had surgery less than a year ago and treatment with synthoid left me feeling horrid. My doc refused to give me anything else, so I switched to an ND. The ND gave me cytomel (when I asked for armour he said let's first figure out how much cytomel works for you- on top of the synthroid- and then we'll do the conversion from cytome/synthoid to armour) Then I tested myself for RT3 and it was high. So I got myself onto cytomel-only treatment. As I cannot raise too much cytomel at a time (my cortisol reserves are low, and I'm working on that, taking HC) I'm underdosed on cytomel-only treatment, until I bring my dose up to adequate levels. Now my TSH is above 40 and surely a good time to do another iodine-uptake body scan :) TSH is supposed to be suppressed, they say. I wonder if they're right. At this point I don't know what to believe. With a high TSH, they say, any remaining thyroid cancer cells can reproduce. So how does one treat thyroid cancer naturally? I'm gluten free, sugar free, dairy free, taking 35 mg. cortef, and fludrocortisone for low aldosterone, and cytomel. Yes indeed, I have learned the hard way to finally put myself on top of the list of priorities. Thank you for the link to the blog! I had no clue there was an alternative to surgery for removal of metastisized thyroid cancer. What would have been the alternative?

I had surgery less than a year ago and treatment with synthoid left me feeling horrid. My doc refused to give me anything else, so I switched to an ND. The ND gave me cytomel (when I asked for armour he said let’s first figure out how much cytomel works for you– on top of the synthroid– and then we’ll do the conversion from cytome/synthoid to armour)

Then I tested myself for RT3 and it was high. So I got myself onto cytomel-only treatment.

As I cannot raise too much cytomel at a time (my cortisol reserves are low, and I’m working on that, taking HC) I’m underdosed on cytomel-only treatment, until I bring my dose up to adequate levels.

Now my TSH is above 40 and surely a good time to do another iodine-uptake body scan :)

TSH is supposed to be suppressed, they say. I wonder if they’re right. At this point I don’t know what to believe.

With a high TSH, they say, any remaining thyroid cancer cells can reproduce.

So how does one treat thyroid cancer naturally?
I’m gluten free, sugar free, dairy free, taking 35 mg. cortef, and fludrocortisone for low aldosterone, and cytomel.

Yes indeed, I have learned the hard way to finally put myself on top of the list of priorities.

]]> By: Sandra http://www.stopthethyroidmadness.com/2009/12/29/the-agonies-of-being-thyroidless/comment-page-1/#comment-46924 Sandra Fri, 01 Jan 2010 16:04:18 +0000 http://www.stopthethyroidmadness.com/?p=4367#comment-46924 Oh I forgot to mention that if you are trying to figure out is you should let them take your thyroid and put you on synthetic thyroid hormone you had better be prepared to spend thousands of dollars on naturopathic doctors who will look for every other thing to be the problem with your health and not your thyroid. Prior to finding this site only 6 months ago I have spent the last 4 years going to 6 different naturopaths and have exhaused our savings. Oh I forgot to mention that if you are trying to figure out is you should let them take your thyroid and put you on synthetic thyroid hormone you had better be prepared to spend thousands of dollars on naturopathic doctors who will look for every other thing to be the problem with your health and not your thyroid. Prior to finding this site only 6 months ago I have spent the last 4 years going to 6 different naturopaths and have exhaused our savings.

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