Jenn121 Posted June 28, 2016 Share Posted June 28, 2016 (edited) I have many many symptoms of thyroid issues and have been trying for many years to get it addressed. Well, now my thyroid is enlarged and can be felt in a physical exam. My Dr. tested my TSH (2.05) and free T4 (1) and since they were within normal range she had me take additional heartburn med to see if my newest symptoms (neck pressure, hoarseness, and cough) were silent reflux. I did it because I was tired of arguing and after 2 weeks no change. SO now I have been referred to a Endo and I am very apprehensive that I will be told there is nothing wrong. Can any of you that have BTDT help me with what to ask and how to handle this appointment? I am afraid to be hopeful about it. I am overweight and have been dismissed before with the "lose weight and it will get better" crap. Also, my Dad was a medical professional in the military my whole childhood so the 'Don't question" attitude is something I also deal with. Thanks. Edited for typos Edited June 28, 2016 by Jenn121 Quote Link to comment Share on other sites More sharing options...
Guest Posted June 28, 2016 Share Posted June 28, 2016 Ellie! Where are you?!! :) If Ellie doesn't reply, you should PM her. She's an expert at this stuff and left me very well informed for my first endocrinologist appointment. Quote Link to comment Share on other sites More sharing options...
Jenn121 Posted June 28, 2016 Author Share Posted June 28, 2016 Ellie! Where are you?!! :) If Ellie doesn't reply, you should PM her. She's an expert at this stuff and left me very well informed for my first endocrinologist appointment. Thank you! Quote Link to comment Share on other sites More sharing options...
J-rap Posted June 28, 2016 Share Posted June 28, 2016 (edited) If your thyroid is enlarged, I can't imagine that a good Endo doc would just ignore it. I'd think they would check for other things too, not just TSH levels. It could be a goiter or nodules or something. Hopefully you'll have an answer soon, so you can start feeling better! Edited June 28, 2016 by J-rap 4 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted June 28, 2016 Share Posted June 28, 2016 (edited) http://www.wellbeyond55.com/wp-content/uploads/2014/10/thyroidLevels_chart.jpg this is the chart. I'm sorry I just got home - stopthethyroidmadness - online and in book form will tell you what tests teh dr needs to run to be effective, and what are appropriate treatments. elle and soror have good info. free t3, free t4, reverse t3, iron, cortisol are all things that affect thyroid. tsh is *worthless*. "total" is *worthless*. Edited June 28, 2016 by gardenmom5 2 Quote Link to comment Share on other sites More sharing options...
hornblower Posted June 28, 2016 Share Posted June 28, 2016 I have an enlarged thyroid which was just noticed last Dec. It's not an unusual thing to have. My labs came back all normal (several times). The care standards here for an enlarged thyroid are a thyroid ultrasound. The ultrasound showed I have several very large nodules. That is also not an unusual thing to have but the diagnostic protocol is to fine needle biopsy. I did that. Everyone said odds are overwhelming that it's nothing & the results would be totally fine. One of mine came back suspicious so now I'm going to have 1/2 my thyroid removed. We still don't know if it's benign or not & won't until it's removed. I would get an ultrasound. The ultrasound is totally non invasive & easy peasy. If it's just an enlarged goiter without nodules, & your thyroid is working fine, you need do nothing & just moniter your goiter. If there are nodules, depending on the size, you may end up having to do a biopsy. The biopsies are actually not bad either.There are some excellent evidence based guidelines (recently updated) for the assessment and treatment of goiter and I suggest you have a look & ensure your endo follows them. 2 Quote Link to comment Share on other sites More sharing options...
Soror Posted June 28, 2016 Share Posted June 28, 2016 (edited) Just like any profession there are good and bad endos. The first step should be an ultrasound, then depending on what shows they might do a fine needle aspiration. As hornblower said treatment guidelines have changed- https://www.mskcc.org/blog/new-thyroid-guidelines-reflect-altered-treatment-landscape. Nodules on your thyroid are actually not uncommon and in the vast majority of cases are not of concern. I'd want to be tested for Hashimotos, which requires the testing of antibodies. Read up yourself on Stop the Thyroid Madness so you understand everything. The current guidelines for TSH is that it should be under 3, although studies show normal people have a TSH around 1. Of course guidelines keep getting lowered and an increasing number of dr.'s and even Endos are realizing that TSH over 1 is problematic. To see full full thyroid function you would want: Free T3 (the amount of thyroid hormone available in your body to use) Free T4 (your body makes T4 among other things which is primarily converted to T3 to use) RT3 to check conversion- you don't want this number high as it means your body is converting to a form you are unable to use and studies show RT3 is a potent thyroid inhibitor IIRC the usual range for FT4 is .8-1.8, so you are just barely in range on that. It is a crap shot as to whether or not he would even treat you, although if you look at the studies treatment of euthyroid patients betters outcomes for various things(including heart issues which often occur w/ thyroid issues). If he does want to treat you then it is likely he will put you on synthetic T4. The problem is many people don't convert T4 into T3 well and the thyroid produces more than T4. I would ask for naturally dessicated thyroid- there are several brands- Naturethroid, WP Thyroid among them- also Armour but it does not have good reviews since it was reformulated and the price rose substantially. This site has some good info and links to different studies. I keep forgetting to bookmark different ones after I look it up. So, it isn't just about how you feel but reducing your risk for other issues and stalling the progression of the disease and the deterioration of the thyroid. http://jeffreydachmd.com/tsh-wars-part-one/ Edited June 28, 2016 by soror 3 Quote Link to comment Share on other sites More sharing options...
Soror Posted June 28, 2016 Share Posted June 28, 2016 Also, at a minimum you should have a full iron panel done. Your body needs iron to utilize thyroid hormone but low hormone reduces our ability to absorb nutritents, it is a horrible cycle. Ferritin TIBC Total Iron Saturation When I was diagnosed with Hashi's they also found nodules. My numbers were subclinical at the time and my iron was in the toilet, I have to keep an eye on my D and B levels too, those things alone make a big difference in how you feel too. 1 Quote Link to comment Share on other sites More sharing options...
J-rap Posted June 28, 2016 Share Posted June 28, 2016 I have an enlarged thyroid which was just noticed last Dec. It's not an unusual thing to have. My labs came back all normal (several times). The care standards here for an enlarged thyroid are a thyroid ultrasound. The ultrasound showed I have several very large nodules. That is also not an unusual thing to have but the diagnostic protocol is to fine needle biopsy. I did that. Everyone said odds are overwhelming that it's nothing & the results would be totally fine. One of mine came back suspicious so now I'm going to have 1/2 my thyroid removed. We still don't know if it's benign or not & won't until it's removed. I would get an ultrasound. The ultrasound is totally non invasive & easy peasy. If it's just an enlarged goiter without nodules, & your thyroid is working fine, you need do nothing & just moniter your goiter. If there are nodules, depending on the size, you may end up having to do a biopsy. The biopsies are actually not bad either. There are some excellent evidence based guidelines (recently updated) for the assessment and treatment of goiter and I suggest you have a look & ensure your endo follows them. This same thing happened to me, a long time ago now! Maybe 20 years ago. My biopsy showed that it most likely was cancer though, so I was scheduled for a complete thyroidectomy. During the surgery, they determined that it was not cancer after all, but that there were a lot of pre-cancer cells in it that looked like they could change. So, to be absolutely safe, they still went through with the thyroidectomy. My body seemed to adapt to synthroid extremely easily and I've never had a single odd symptom or problem. Very easy! Anyway...just to encourage you! :) 3 Quote Link to comment Share on other sites More sharing options...
hornblower Posted June 28, 2016 Share Posted June 28, 2016 This same thing happened to me, a long time ago now! Maybe 20 years ago. My biopsy showed that it most likely was cancer though, so I was scheduled for a complete thyroidectomy. During the surgery, they determined that it was not cancer after all, but that there were a lot of pre-cancer cells in it that looked like they could change. So, to be absolutely safe, they still went through with the thyroidectomy. My body seemed to adapt to synthroid extremely easily and I've never had a single odd symptom or problem. Very easy! Anyway...just to encourage you! :) Thank you! I'll be putting this in my happy thoughts folder to read again when I get closer to the surgery date :) 3 Quote Link to comment Share on other sites More sharing options...
Jenn121 Posted June 28, 2016 Author Share Posted June 28, 2016 Thank you all for the support and information. I have a lot of reading to do. :D Through this I have felt at time like I was crazy. 1 Quote Link to comment Share on other sites More sharing options...
Ellie Posted June 28, 2016 Share Posted June 28, 2016 I have many many symptoms of thyroid issues and have been trying for many years to get it addressed. Well, now my thyroid is enlarged and can be felt in a physical exam. My Dr. tested my TSH (2.05) and free T4 (1) and since they were within normal range she had me take additional heartburn med to see if my newest symptoms (neck pressure, hoarseness, and cough) were silent reflux. I did it because I was tired of arguing and after 2 weeks no change. SO now I have been referred to a Endo and I am very apprehensive that I will be told there is nothing wrong. Can any of you that have BTDT help me with what to ask and how to handle this appointment? I am afraid to be hopeful about it. I am overweight and have been dismissed before with the "lose weight and it will get better" crap. Also, my Dad was a medical professional in the military my whole childhood so the 'Don't question" attitude is something I also deal with. Thanks. Edited for typos Your TSH is too high, and your FT4 is, gosh, rock bottom. Your doctor shouldn't be treating thyroid issues because she does not know what she's doing. Sorry. These are the labs you want: Your thyroid levels need to be OPTIMAL: Upper fourth for Free T3, upper half for Free T4, lower fourth for TSH. DO NOT let anyone tell you that your levels are "in range" or "normal." That's poppycock. They must give you a hard copy of your results, and they must test FT3, FT4, Reverse T3, and TSH every.single.time. You should test your adrenals. The most effective is a 24-hr. saliva test, and you'll probably have to order it yourself. If your endo (and be forewarned: among long-time thryoid-sufferers, endos have a really bad rep) wants to start you on meds, implore him to prescribe NDT (natural desiccated thyroid) such as Armour, NatureThroid, or WP Thyroid. If he refuses, thank him, leave the office, and never go back. Find an endo who will. Don't waste your time trying to work with him. It's your health. And finally, don't underestimate how much your diet affects how you feel. You might consider the Autoimmune Protocol (AIP), which is initially an elimination diet. So many people report feeling better when they followed AIP (many lose weight, not all do; it isn't a weight-loss program). 2 Quote Link to comment Share on other sites More sharing options...
Jenn121 Posted June 28, 2016 Author Share Posted June 28, 2016 Thank you so much. I will look all this over and write out what to ask for! I will to better with a list. :D Your TSH is too high, and your FT4 is, gosh, rock bottom. Your doctor shouldn't be treating thyroid issues because she does not know what she's doing. Sorry. These are the labs you want: Your thyroid levels need to be OPTIMAL: Upper fourth for Free T3, upper half for Free T4, lower fourth for TSH. DO NOT let anyone tell you that your levels are "in range" or "normal." That's poppycock. They must give you a hard copy of your results, and they must test FT3, FT4, Reverse T3, and TSH every.single.time. You should test your adrenals. The most effective is a 24-hr. saliva test, and you'll probably have to order it yourself. If your endo (and be forewarned: among long-time thryoid-sufferers, endos have a really bad rep) wants to start you on meds, implore him to prescribe NDT (natural desiccated thyroid) such as Armour, NatureThroid, or WP Thyroid. If he refuses, thank him, leave the office, and never go back. Find an endo who will. Don't waste your time trying to work with him. It's your health. And finally, don't underestimate how much your diet affects how you feel. You might consider the Autoimmune Protocol (AIP), which is initially an elimination diet. So many people report feeling better when they followed AIP (many lose weight, not all do; it isn't a weight-loss program). Quote Link to comment Share on other sites More sharing options...
Jenn121 Posted July 1, 2016 Author Share Posted July 1, 2016 So it went poorly. My thyroid is not enlarged but has a unusual texture and an unusual shape. One lobe is long. He mentioned granular hashimotos but did not diagnose that. He said I am as risk to thyroid disfunction and we should watch it. My TPO was at 20 which was when he started casually mentioned the hashimotos. I am disappointed and I have Kaiser which mean finding another Dr. difficult. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Caraway Posted July 2, 2016 Share Posted July 2, 2016 What was the lab range for TPO? Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
hornblower Posted July 2, 2016 Share Posted July 2, 2016 So it went poorly. My thyroid is not enlarged but has a unusual texture and an unusual shape. One lobe is long. Was this on ultrasound? Quote Link to comment Share on other sites More sharing options...
Sara in AZ Posted July 2, 2016 Share Posted July 2, 2016 So sorry if didn't go well! I still remember the 45 minutes I spent crying on the phone to my mother after the endocrinologist I thought would help me told me I had "thyroiditis" that would clear up on it's own. When I asked him what to do about all my debilitating symptoms he said, "It has to get worse before it can get better." 😢😢😢😢 Then I went home and spent a lot of time on Stop the Thyroid Madness and found a list of recommended doctors. I was able to find a fantastic, caring naturopath who helped me get better. We did the saliva testing and discovered some adrenal issues, as well. The care was night and day. Had to pay out of pocket, but it was worth every penny. Does anyone know if Stop the Thyroid Madness still has a referral linked? 4 Quote Link to comment Share on other sites More sharing options...
Peaceful Isle Posted July 2, 2016 Share Posted July 2, 2016 So sorry if didn't go well! I still remember the 45 minutes I spent crying on the phone to my mother after the endocrinologist I thought would help me told me I had "thyroiditis" that would clear up on it's own. When I asked him what to do about all my debilitating symptoms he said, "It has to get worse before it can get better." 😢😢😢😢 Then I went home and spent a lot of time on Stop the Thyroid Madness and found a list of recommended doctors. I was able to find a fantastic, caring naturopath who helped me get better. We did the saliva testing and discovered some adrenal issues, as well. The care was night and day. Had to pay out of pocket, but it was worth every penny. Does anyone know if Stop the Thyroid Madness still has a referral linked? I agree with paying out of pocket. If you have it, it is so worth it. I finally have a Dr that listens to me. They are not all out of reach expensive. Mine is $50 a visit. Yes, more than my insurance Dr, but what is she worth if she can't help me? Good luck!! 3 Quote Link to comment Share on other sites More sharing options...
Ellie Posted July 2, 2016 Share Posted July 2, 2016 So it went poorly. My thyroid is not enlarged but has a unusual texture and an unusual shape. One lobe is long. He mentioned granular hashimotos but did not diagnose that. He said I am as risk to thyroid disfunction and we should watch it. My TPO was at 20 which was when he started casually mentioned the hashimotos. I am disappointed and I have Kaiser which mean finding another Dr. difficult. Sent from my iPhone using Tapatalk What an idiot. Although Kaiser was good for our family overall, it tends to suck when it comes to any thyroid issues. I was undermedicated for 20 years because of Kaiser. :cursing: There are several Hashimoto's FB pages, if you do FB. It would be good for you to join a couple of them. Also, Stop the Thyroid Madness has links for places to do your own labs; you'll still need a doctor (of some kind) to write scripts for you if you need them, but at least you can get a full panel of tests. 1 Quote Link to comment Share on other sites More sharing options...
Jenn121 Posted July 2, 2016 Author Share Posted July 2, 2016 What was the lab range for TPO? <= 35 Sent from my iPhone using Tapatalk Was this on ultrasound? Yes Quote Link to comment Share on other sites More sharing options...
Jenn121 Posted July 2, 2016 Author Share Posted July 2, 2016 What an idiot. Although Kaiser was good for our family overall, it tends to suck when it comes to any thyroid issues. I was undermedicated for 20 years because of Kaiser. :cursing: There are several Hashimoto's FB pages, if you do FB. It would be good for you to join a couple of them. Also, Stop the Thyroid Madness has links for places to do your own labs; you'll still need a doctor (of some kind) to write scripts for you if you need them, but at least you can get a full panel of tests. I agree. Overall, I like Kaiser. They are very responsive to the children. Oh and I figured out that TPO test result was from last September. I emailed him when I was calm and asked for a updated round of tests and listed out ALL the other symptom I have and asked that we start treatment and if it does not work then we move on but I can't just sit and do nothing. I have been reading and it seems that it is darn near impossible to get Thyroid issues diagnosed when in the early less damaging stages. It IS madness. :( Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted July 2, 2016 Share Posted July 2, 2016 What an idiot. Although Kaiser was good for our family overall, it tends to suck when it comes to any thyroid issues. I was undermedicated for 20 years because of Kaiser. :cursing: There are several Hashimoto's FB pages, if you do FB. It would be good for you to join a couple of them. Also, Stop the Thyroid Madness has links for places to do your own labs; you'll still need a doctor (of some kind) to write scripts for you if you need them, but at least you can get a full panel of tests. It's not just kaiser - that's seems to be the standard of care. I've been with many drs, many insurance cos, and two different major hospital associated providers. it's all the same - as little t4 as they can get away with prescribing and only running a tsh. Quote Link to comment Share on other sites More sharing options...
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