Very frustrated!

I had my TT on April 24, 2013. After a canceled appointment I was finally seen for my first follow up with my Endo at 5 1/2 weeks postop. My surgeon had given me my pathology report the week before, I had micropapillary carcinoma. The tumor was only .26 cm so I did not have to have RAI (thank god.) I had only went in to have the left lobe removed due to a goiter and a growing nodule that had a inconclusive biopsy. I was assured by my Endo that 90% of inconclusive biopsies come out as non cancerous. I did not ask a lot of questions about" what if" they removed the whole thyroid. I was on a roller coaster afterwards! I was feeling depressed, lethargic and my body was buzzing! After they cancelled my appointment I fell apart a little because I was trying to keep it together till the appointment. I asked the nurse if there was anything I could do to help with the symptoms till the dr saw me. She heard my 2 year old in the background and suggested I get a sitter. That really hit me wrong and I just got off the phone and got through another week. He started me on 88mcg of synthroid and I was still taking 1200mg calcium with vit D. A week later I started having burning pains in my hands at night. I had an appointment with my Chiropractor and he suggested I take potassium because I felt there was some swelling. I called and left a message with the nurse. I just wanted to okay it with them before I started the potassium. No one called me back so I called the next day and left a message with the nurse and still no return call. I started the potassium and by the third night my symptoms were gone but started having visible swelling in my feet and tingling toes and fingers. I called and talked to the office manager and told her I had trouble communicating with the nurse and needed to know what I should do. The nurse called while I was putting my daughter down for a nap and left me a message saying the drs notes stated I should not have my script filled for the synthroid so I should not be taking any meds. It was my first follow up appointment and he actually gave me samples to get me through to my next appointment with bloodwork. He did write me a script and told me not to fill it untill my labs were checked. I guess the part with the samples were omitted in the notes. So I called and left that on a voice mail for the nurse and asked her to call me back about he tingling. It has been two days and nothing. I upped my own calcium and the symptoms have subsided. I like my dr but I'm fed up with the nurse. What else can I do but switch drs?!

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I feel your pain. I too have had issues with my Drs. office not responding to my communication. From the very beginning, I was told that the best way of communicating with them was by email, so on a couple of occasions I followed their directions and sent an email with some questions I had. I received an email fairly promptly the first time. The next time I got an email telling me that other than the time spent with me in the office, they didn't have any more time to give to me. Can you imagine that? I couldn't believe it. I know my doctor is good at ordering tests etc, but he is totally lacking in understanding that he is dealing with people who have cancer that are scared to death of what's next. I don't know. I'm on the fence about whether or not to change doctors or not. We'll see, sooner rather than later. Maybe you ought to think about switching to another doctor too. Good luck and keep me posted.

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I too have struggled with the buzzing/tingling thing. I'm not sure but some supplements seemed to help me. Lots of vitamin b--Bcomplex and B6, vitamin d, Calcium, magnesium, and fish oil are the ones I took for the buzzing/tingling. It seemed to help. Some of that though can be from your levels not being correct. Be patient. I can say that for the most part, the tingling I had has subsided. Some days I feel some, but most of the time I'm pretty good. As far as the nurse situation, that is hard, because you like your doctor! Remember that most of the symtoms and communication regarding levels is going to be during these initial months. As time goes on, you'll need less communication. Eventually it will be once or twice a year! So if you like you doctor, I'd probably not switch. However, one thing I appreciate about my doctor's office (Mayo Clinic) is the nurses and staff are extremely nice, understanding and prompt. It always helps, as I don't exactly enjoy anytime I have to call regarding my health situation (rather not have it if you know what I mean). :) Feel free to message me about the buzzing/tingling symptoms If I can help further. I definitely struggled with that for a good while....

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At the end of your next appointment, you need to let the doctor know of your concerns about phone communication. I'm kind of hypo right now and can't think of how I have worded it in the past, but it needs to not be accusatory but yet it needs to be informative, expressing your concern about it and clear that X number of phone calls have gone unanswered and that you have been worried about your symptoms (which you will have just discussed with the doctor). Calcium issues are nothing to mess around with. The doctor needs to know when his staff is failing, because it is a direct reflection on him and his practice. I complained about one nurse who was (IMO) dangerously incompetent. She could not even schedule my WBS when I gave her the instructions. I did it nicely, and the response from my endo was, "I know. Thank you for telling me. Here is the cell number for the head of nurses for the practice. Call her when you have an issue." The incompetent nurse disappeared about a month or two later and my relief was enormous.

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I had to switch Endos even though I liked my doctor becuz I could not deal with ongoing issues with communication. I am really glad that I did. The new doc upped my post op dose of 88 mg immediately to 125 and last week to 150. Huge difference. I had slept for 4 weeks after my surgery March 25th and the new Endo was shocked at the lack of follow up on the part of the first one.

BTW, had I listened to my first lymph node cancer may not have been discovered for awhile. The new Endo ordered tests on my neck right away and on June 22 I go for a bilateral and central neck dissection. A life saving procedure they tell me. First Endo never ordered a neck study!

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I agree with Cabro in that you need to have a conversation with your doctor about your concerns with communication and his office staff. If you like him, at least try this first before giving up on him but if it is not going to work, then by all means change doctors. Remember they are working for you and need to be there for you when you need them. When my daughter met her endo for the first time post TT, one of the first things I asked him was for his email address and if I emailed him with questions would he respond? He gave it to me no questions asked and I have already emailed him several times. We had a problem when she switched from taking generic Synthroid to Cytomel only in preparation for RAI at the end of June. My daughter was having severe headaches (throwing up, seeing spots, etc. that would last for hours at a time) because of the medicine change. After 5 days and 3 severe migrane episodes I emailed him at 9:30 at night because my daughter begged me to do so. I explained to the doctor what had been going on and asked if this was normal. I expected him to see it in the morning when he got to work, but within a half and hour he had emailed me back saying this was not normal, to put her back on her regular Thyroid Meds and we would find another way. We switched back to her regular meds and she is doing great. Now she will be getting Thryogen shots at the end of the month instead of going hypo the old fashion way. I wish you the best of luck and really hope you can start to feel better soon. Be careful with the calcium issues, it is definitely not something to mess around with.

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I sympathize. Had to change PCP because of so much trouble with his scheduler, many months went by before I could really have an FNA and even after surgery I was left 4 or 5 months waiting for an Endocrinologist and without thyroid hormones, I had no brain left, pockets under me eyes, etc. It took the help of an energetic Case Manager from the hospital in which I had the surgery done to scare the Doctor and his office to finally find someone.

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Thank you everyone for all your support and feedback! I got an unexpected call from the nurse on Friday at 3:50. His regular nurse had been off for a week and they had 2 temps that we're apparently lack luster. The nurse got about 1/3 my message. So after I spoke with her and told her all my symptoms and that I had already added potassium and upped my calcium she said she would call Monday after speaking to the dr.because he had already left to do rounds. Feeling a little better knowing the situation.

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That's a relief and I hope you can get some answers and guidance now.

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