Is this typical of your Endocrinologist visits?

Papillary thyroid cancer: TT on 7/16/2013, RAI (134 mci) 8/13/13. Advised to begin taking 125mcg of Levothyroxine the day after RAI.

I just got home from a check up with my Endocrinologist. He had zero interest in how I'm feeling or doing. He said that the blood work will show if we need to reflect my dosage. If the numbers look good, then it must be something else and I should see my GP to figure it out.

I am experiencing things now that I didn't have prior to my surgery. Very tired, nails aren't growing (for weeks now), headaches, weight gain, my hair is falling out by the handful, freezing cold most of the time (even when it's 80 degrees outside). I had nausea and major GI upset for 3 weeks after RAI, which he insists could not possible be caused by the RAI. Again, he said there must be something else going on and I should talk to my GP.

I'm so frustrated, and left my appointment in tears. But, I've spoken with a few other people I know that have thyroid issues, and they say their Endo's are the same way with them.

Is this typical, or should I start trying to find another doctor?

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Yes, this is typical. I think they all take a special class on how to alienate and humiliate patients. Then they turn it around and make it our fault somehow. You can try to address this with your endo, but he/she will just ignore it. Mine said I was "depressed". I clarified for him. I'd been on my couch for 8 months, synthetic hormones made my hair fall out, my weight sky rocket, my heart race. I told him, "I'm not depressed, I'm pissed off." Not very diplomatic or polite, but when a southern woman gets angry, all bets are off. I found a new doc. And my new endo. isn't much better. He's an a-----e too. But I'm ready for him. I've compiled tons of information for my next visit. And I'm prepared to walk in with a smile on my face and a bright, shiny attitude. Get a doc to prescribe natural desiccated thyroid.

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Definitely you want to get the Free t3 results and look into either cytomel plus T4 meds (reduced quite a bit to add cytomel) or just go natural desiccated thyroid which has T4 and T3. While T4 only works for a few eventually I believe many of those will show various symptoms too. For the long run of your life, it is wise to get off any plan that involves T4 only.

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It IS all related. I was not cold a day in my life until I had my TT. Now I freeze 6 months of the year. I tolerated RAI, but the 5mCi tracer 11 months later tore my stomach and esophagus to shreds. It has taken almost 2 years on Nexium to get the Barrett's Esopahagus back under control.

Begin to search for a doctor who will help you. My sister has found a naturopath who added Cytomel and compounded hormones. It is a pricey path but it has helped her a lot. I need T3 and my endo (#2) knows it. When I first went to him, I was on Armour. After RAI, he added T4 for a stable base to keep my TSH below .1. 19 months later, my T3 numbers were still not high enough and I felt crummy. We switched to Levoxyl + Cytomel. I began to feel better and to heal better. Now I'm dealing with the Levoxyl recall, and NDT (natural dessicated thyroid like Armour, NatureThroid, Westhroid-P and Erfa) is back on the table as an option.

Everyone's path is a little different. But I want (and have) a doctor who thinks of me as more than a set of numbers and is willing to try to address my symptoms. If Levoxyl comes back, I will have a brighter future with Levoxyl and Cytomel. I hope you can find help, too.

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I need to chime in with a more positive endo experience. From my very first appt, when the nodules were found, my doc has been been competent and kind. He has provided all the info I expected and what I did not know to ask. My latest appt was last week, the day of RAI. I discussed my concern on the amount of time it would take me to be 'unhypo'. He has started me on t4 plus t3 for the first 2 weeks to get me feeling better faster. I know this is early in the game and I have a way to go to find a hormone balance for the long term. However for now I feel very lucky to have this doc.

I did figure out early on that this guy will always be running a little late for his appts. Probably because he does spend so much time talking and listening to his patients. I have decided to consider him like a really fine dinning experience; worth the wait.

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sorry, I must have missed that class in medical school. You are painting with a pretty broad brush there, mm.

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My endo in uncomfortable doing anythng outside the box. I'm 6 years post TT and have an upcoming appointment that I'm have requested additional tests and have typed up talking points so I don't get frustrated get off track. I have a lot of reflux issues and one thing that has helped tremendously is Marshmallow Root (some just say Marshmallow). Nope, not the sweet thing we use for s'mores, it is an herb that you can take in capsule form. I was taking perscription meds and they were not cutting it and so a friend that is licensed in Chinese Herbs suggested the marshmallow because it actually helps to heal the lining of your stomach and esophogus. I bought mine at a health food store and have suggested it to others and they've had luck with it. You might try it. I started out taking it every day and now only have to take it once every couple of weeks if that. You do have to be careful though because it is a coating herb to not take it four hours either why of your thyroid meds.

Blessings

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I saw a new endo today. Her interest as advertised on the internet was obesity. She did give me Cytomel but WOULD NOT TEST FOR Free T3 OR FREE T4. Said it had no clinical value. Now that certainly is confusing. We talked about the fact that the T3 is responsible for metabolism and wouldn't that effect one's weight. She doesn't believe in managing weight with a T3 and I have read that before. Did not want to precipitate a cardiac event. What difference does it make if I don't lose weight I will have an MI eventually anyway. Half a dozen of one and six of another.

It's interesting that she would give me the cytomel but not Test for freeT3 or rvT3. She was a bit more attentive than my other endo. Hopefully, my PCP will test for freeT3.

But yes your visit is typical.

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That is exactly the way my endo was. I have a ton of other miserable symptoms-the worst being weight gain-a lot and sweating like a sumo wrestler who just completed a marathon-although I sweat like that making my bed or trying to get dressed. Every single time I mentioned the sweating or weight, he would shrug his shoulders BUT he watched my numbers and ordered scans. His goal was to make sure I stayed cancer free. He was on top of that. I have a poor quality of life and have been trying to find a different doctor but it's been almost 20 years. Surgery. Radiation. Close follow up with scans. I hate being fat and I the sweating is so intense I literally freak out and I have a lot of pain but I am alive. I think my doctor only cared about no recurrence. I think that's what your doctor is doing. I think they feel you should be grateful to be alive and put up with the rest. Having such a recent TT, I think you should expect to put up with a lot of inconveniences. It sucks. I know. BUT, you sound hypo-my heart was pounding out of my chest when I was first put on thyroid replacement/suppression. You need to be a little hyper in order to suppress any remaining cancer. Most people have a TSH under 1 after a TT. My doc liked mine at .2. Look into that.

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I don't think it is necessarily typical, but I do think doctors like to rely on numbers rather than just symptoms.

My endo spends an hour with me, gives me a complete physical, and talks to me about my symptoms and life in general. We stick with TSH and fee t4, but she'll look at free t3 if I am having symptoms (which I think is really important). Luckily for me, I'm one of the easy cases and can stick to just plain ol' synthroid.

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My experience with my endocrinologist is completely different. She has spent a lot of time talking to me and explaining the choices I have and her recommendations. She is the one who discovered they thyroid tumor--then cancer, then referred me to an excellent surgeon--and stayed involved all along. She is extremely competent, specializing in thyroid cancer but also young and enthusiastic. I wonder whether people get burned out later. At any rate, I feel lucky to have good care; it stops me from second guessing and worrying. I am only 6 wks post surgery. and heading for the RAI in a couple of weeks.

I hope you check around for recommendations for a good endocrinologist who also listens to you. I am sorry you have to cope with that. I've been there in other situations and it's a terrible experience.

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I think doctors are terrible and I am one. Thankfully my endocrinologist actually listened to me when I first went to him. I told him the problem was my thyroid and he did all the necessary bloodwork. Surprisingly, it was all normal. I insisted there was something wrong so he basically did an ultrasound to appease me and nodules were found. I wouldn't let it lie so they did a scan which showed no uptake and then we got a biopsy even though it was still appease me. The biopsy was inconclusive and the radiologist thankfully requested a gene expression test which showed malignancy. I hate to think what would have happened if they didn't want to appease me! Now however I am dealing with starting at a very low dose of thyroxine as he doesn't believe in starting at the higher doses for cancer patients. I am very drained and just want to get back to normal. I really don't care what my numbers say as they were normal to start with so clinical signs should guide the dose for some people. I am looking to switch doctors as I don't agree with the philosophy of starting super low and taking six months to get to a dose that may suppress your tsh enough to prevent recurrence. I would look for another doctor.

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SuePort Charlotte, I am glad you are looking further into it. What an amazing story--and also glad you did persist. I found mine because I casually went to a thyroid screening booth at a hospital "open house." (the great cake was the incentive!)

Although my regular doctor assured me that my thyroid was ok(after I complained about fatigue,etc), it turned out to be papillary carcinoma, tall cell, about to make lots of trouble (extrathyroidal extensions and vascular invasion).
In terms of the synthroid, they started me right away on 137mcg and I have been doing very well. Please keep checking. I hope you feel well soon.

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Sorry to hear about your experience. im in Aus and i have a lovely surgeon and endcrino and nuc med oncologist - they are all lovely.
Wish I could help.
Good luck and get another endocrin!

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I would say find another endo, since this is in no way indicative of how my endo works. He is always inquiring about the indicia of both hypo- and hyper-thyroidism. And, while he relies on the blood work in making his determination, he doesn't use that as the sole indicia. But, my endo is 79 years old and still comes out to the waiting room to personally usher his patients back to the examination room. You need an endo who not only knows about Thyca, but is responsive to the patient.

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chris432, Thank God you missed the class! If you're an endo and you're not insisting that synthetics are the only way to go and that most TT patients or hypothyroid patients, need antidepressants, then I applaud you. But if you read more of our stories, you'll see they're eerily similar. Both my endo's told me that my hair loss, brain fog and "depression" was NOT related to my TT or the synthetic hormones I was taking at the time. Then just dismissed almost all my questions and prescribed medications that would turn me into a zombie. A balding, tired, confused, zombie. I'm so tired of "explaining" myself to people. But I guess that comes with the territory. Hopefully, someday soon someone will stand up and conduct the research needed to better pinpoint the type of healthcare we need. Until then I'll continue to be my own advocate and speak out. And I'll continue to take charge in my own health care regimen.

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It's pretty typical apparently :( We have 6 hospitals here, one is a major medical college, and only about 5 endos for the whole dang town. I think they're so darn busy with diabetes, that poor thyroid cancer kids get the crap end of the deal.

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I have a great experience with my docs. In day 7 of post RAI, stomach aches has been my experience. I added apples, bananas and rice to calm things down. It's working.

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My mother's Endo is also like this. Having thyca alone is stressful and when you find the person who is supposed to guide you not caring it becomes even harder. From my experience it is the Nuclear Medicine doctor who has become my primary source of guidance and spearheads all decisions and the Endo is only secondary who we visit every 6 months, do blood tests and then he checks them and adjusts the medication. I suggest you also visit a Psychologist, my mother was depressed after the surgery and the treatments. She was given some mild anti-depressants to take for afew months, it had a tremendous effect on her and now she is much better.

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My first endo was terrible. He told me there was no way I had cancer despite knowing my lump was calcified (75% chance of malignancy with calcification, according to NIH). Then, after surgery and RAI, he told me none of my problems were related, despite the fact that all of these problems cropped up after the TT. I got a second endo after just a few months. This endo is better -- he takes the time to listen to me, at least, which is a huge step up from the first guy.

However, he won't test T3, because my T4 numbers are excellent. He doesn't dismiss the problems I'm having, but the first reason given for everything is, "You're 40 now." Apparently turning 40 magically makes your joints hurt, your hair fall out, your short-term memory to disappear, your vision to go and your gut to stop working properly. I fight that impulse of his, and I've made some progress -- he sent me to an opthamologist who diagnosed chronic dry eye caused by TT, and he changed my Synthroid dosage (which has solved some problems, but has caused new ones). But he's very reluctant to do much, he won't test me any further than TSH and T4, and the whole process is so slow and unhelpful. I see him today, and I'm already dreading it. I'm just so tired of fighting every step of the way. It shouldn't have to be like this.

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Well, I'm 35, had a TT, and I have all of your symptoms too, SEOM. So, what's the excuse now? I'm hoping that with this epidemic upon us, and our kids watching us suffer, that we'll grow a new crop of doctors that will take care of us like we need--if we don't all die from malpractice before then. I had a scan in July and went off meds May 20th, my scan wasn't until July 8th, and they didn't let me back on meds until July 17th because of someone's vacation. Seriously! I live in a city with two major hospitals, and they couldn't find a radiologist in town for a week? Anyway, my point is that when I went in for check up in August and my levels were still too low because I'd been off of meds to the point of cruel and unusual punishment, I was accused of not taking my Synthroid. I take that stuff religiously. I had to argue with my doc, and then remind her of my time off meds... Her response, "Wow, we left you off that long?"

She's the only Endo in town. So, if I want to shop for a new doc, I'll have to drive several hours in any direction. After cancer, surgery, meds, and loss of work, I'm almost financially wiped out. I only hope that some time soon we'll get a new, younger doctor that reads more than lab results and text books printed in 1975.

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