Question: I am 8 months post total thyroidectomy, i had a substernal mediastinal goiter that was as big as a grapefruit according to my ent, I went to the best teaching hospital in the world for this type of surgery according to my other doctors.i am still high tsh, low hemoglobin. severe constipation will be having colonscopy and upper endoscopy as another way to see if that could be cause of anemia. parathyroid were damaged on high calcium to compensate. very tired mentally confused stressed. thyroid was removed through neck and chest incision severe keloiding and constant incision site pain /swelling bones in chest always feel like they are grinding diaphragm hurts still can't take XXXXXXX breaths, voice impacted and comes and goes a lot. My strength is not returned and i can't drive still. during postop recovery room experienced sever leg and back cramps which has caused long term difficulty in walking and standing and straightening posture fully. neck and back pain very difficult to deal with and have been using a cane/walker since surgery to help with ambulation. balance very off. have normal bp mostly except severe spikes when ambulation or sitting and standing with resulting vertigo. this is an over view . The questions i have is though the tumor board decided the questionable cells nodules in my thyroid and isthmus as not being cancer. i have never really been given a diagnosis other than goiter and treatment of results of surgery. the goiter was found by accident though i had problems with chest palpitations and swollening for years which was chalked up to being in my mind and thyroid levels were always normal. I have family history of thyroid cancer and graves of maternal grand mother and 1st cousin, and second cousin on mother side. I m not feeling better got uped to 150 synthroid last week still tired hemoglobin levels are dropping with each test. when i asked within amonth post surgery if they were going to do another scan i was told no. when i went to er for chest pains and they found nothing they said go to your primary to have ct because we can't find anything, primary said well er should have done ct. I am beginning to feel like once more doctors i am paying are dropping the ball and they are missing the opportunity to treat me before things get worse. maternal aunt died of colon cancer and had liver disease i have had severe nausea before and since surgery that coupled with the sever constipation has made life hell. I hope colonscopy points to a direction but i am just concerned i am not feeling better. no one has done any XXXXXXX because they tumor board decided to not consider this cancer my research online has pointed to the opposite directionwith similarly located goiters and labwork. I am not feeling well and I am really getting tired of the wait and see. when in my research pre surgery i asked read about pet scan. They said it was unnecessary, the doctors will decide which scans. Back then i was thankful someone beleived that i had an actually problem and not just trying to write a script full of anti depressants, which wheni have tried to please the doctors always gives me severe palpitations and chest pain and when i complained they told me stop thinking about myself. well finding the goiter proved it was not in my head. post surgery i was admitted for 3 times for low calcium and high tsh levels one of the attending endocrine doctors saw me the last time and i asked about possiblity to make sure that had scanned post surgically because the thyroid i had never showed any abnormal lab values. only the ct showed i had a problem though i had symptoms, the ct led tothe thyroidectomy. post thyroidectomy they only took xrays never a ct or any other scan since then. which doctors ignored i have been afraid post surgically they would once more ignore once they had their empirical numbers making them happy but me still being physically unwell. that is happening right now. question is. what is the correlation between high tsh and low hemoglobin? what other tests or doctors should i see if still i am not getting better. I understand depression can make one feel tired but if bloodwork is continuing to showing low hemoglobin and i am taking iron supplements and numbers are still going down. and I am feeling like i am 80 years old and i am not getting back to myself even before surgery self . I can't work or concentrate on anything too complex,not able to return to work due to my voice instability. is it possible i have a cancer or something that is being untreated. I have had other problems like PCOS ovarian cysts and endometriosis in the past. no endo on the last lap to remove a cyst, and I also have had high insulin 2 years before this surgery, I am not diabetic and usually have suffered from hypoglycemia pre surgery. i am carb conscious and even calorie conscious. i have suffered from obesity and taking thyroid hormone is not improving anything just very careful diet is maintaining high but not gaining any weight, i try to not eat more than 1500 cal per day esp since i do not have high energy output exercise i can do. I am waiting until i can get the strength and ability to do high stress exercise. i still have palpitations and i get winded if i move to quickly or go up stairs too fast. my periods are more normal since surgery, that and being able to breath better have been the benefit of surgery. 9 months before surgery i was given met formin to help lose weight i stopped because it made my urine smell weird exactly like maple syrup when i searched that online never heard of adults having that problem only infants with maple syrup urine disease or even that being related to taking metformin. the higher the synthroid dosage i have been taking now in the last 2 months i notice that maple syrup/ sweet sick smell return from my urine. not my breath. urine tests are normal. when i search online the onlything i find is some people associate with people who have cancer or major illness and impend death. another thing i found is sometimes urine odors or weird body odors can come from late stage liver disease. which is concerning since i know liver disease happen to my aunt. I do not drink. I do not use tylenol. I feel f'd up and feel screwed over. I am really stressed and i do meditation to help. I really really need some guidance thanks as to where to go next to try to get help and what i should be asking my doctors about or should i see a different specialist?

Thanks, for your reply Dr. XXXXXXX
The problem is you are telling me what I already know. I understand that.
I am not worried so much about having colon cancer.

I am not currently taking metformin.
I stopped taking it months before surgery because the disgusting maple syrup smell it gave my urine and it did not help my gi.
since I started taking synthroid from taking cytomel .25 post surgery the dosages of synthroid have been increase from 100, 125, to now last week to 150mcg
at first it was just strong urine scent like urea. but now the scent my urine for the last 2 months is that same sickly sweet maple syrup odor. and now for the last month even that odor is changing to something different not just sweet but musty moldy its weird.

The reason why my aunt died was the colon cancer resulted from anti rejection medication due to having 2 liver transplants. the high steroids she had to take cause the colon cancer. and the liver disease she had was congenital, my grand mother told me its something she inherited from my grand mother but my grand mother never told me the name of the disease and she died 2 days before TD.
they have found liver cysts in me which have been considered benign. when i asked about them i was told its fairly common finding in adult ct's. i know several other relatives and even my brother have had problems with liver enzyme levels over the years. when i was younger before i had the blood clot in my arm i noticed when doctors were treating my endometriosis with birth control pills i always had right side pain. they always ignored it when i mention it. i guess lab work never really showed any problems. which iknow its good when the lab work doesn't show a problem. but it seems to me i am one of those people that labwork does not always show my issues. and i do not think the doctors can just rely on that in my situation but because they are trained that way thats how they are doing things. I think they need to take a different approach. My biochemical pathways seem altered and not as honest or straight forward as the standard. Medical standards are based on a normal healthy white male as the baseline in most western medicine. Not even a normal healthy white female.
This is not a question of even race because i am a hybrid race, multi racial background. Its a question of gender. and more than a question of gender its a question of me being unique and having unique rare problems that other people do not have.
I understand i have hormonal imbalances its a struggle just to put 2 words together and think.
but my gut feeling is something else is amiss. i do not want to feel that way. But time and experience has shown me ignoring this is just going to hurt me more financially down the line. i just want to be certain some other evil tumor is not going to pop up and make my life worse. what is the statistical odds of having 2 very rare, hard to detect tumors, in unusual areas that resulted and caused organ and structural damage to the body? what could be the biological or biochemical process thats underlying thats creating these hidden body monsters? what can be done to screen and detect other hidden illness so if i need treatment it can be done now while i am not working? Please understand i do not want to be more sick. But the fact i am feeling more sick and not progessing in recovery as i should makes me think there is more to this than just hormones. I have read about Multiple Myelomas, and have wondered is it possible that i am experiencing this. esp due to the long standing hormonal problems. another thing i forgot to mention is in 2007 (a lot happened that year) they also found a lump in myright breast and both right and left breasts were experiencing bleeding. they were going to schedule me to have surgery but i ended up having the emergency surgery for the ovarian cyst instead. By the time they were looking at the breast again and did followup mammograms the lump was no longer visible i have had occasional breast pain but not the bleeding and self exam and other exams have not shown anything. My mother currently has breast cancer and has had multiple breast cysts and tumors removed since her 40s. Her doctors suggested she go on tamoxifen but she is not taking that because the risk of CVA. they are not treating her other wise. The ultimate cause of my grandmother's death last august was CVA. high bp runs in the family in my mother;s case polycystic kidney's and renal failure are becoming the cause of her high BP. Now she is having thyroid nodule issues and pituitary cyst both are being monitored. her thyroid is starting to enlarge since last year. Like I said what happened to me is rare. In my family most of the women or men had thyroid problems in their later years.
My youngest brother had a goiter when he went through puberty then it went a way. now he is having more problems and will have to have surgery possibly similar to mine. That is something, he reminded me of recently because i had forgotten that had happened.

Its also possible its cancer with him, he smokes so it also could be a factor. I do not smoke nor have i ever smoked. he is 4 years younger than me.

i just recently found out another cousin is having thyroid issues, also maternal she and I are the same generation.
so it seems suddenly my generation is suddenly in the last 3 years all started having severe thyroid problems and at younger age than my grandmother's generation. My mother and her other siblings did not get thyroid problems but one of their cousins did.
I see a illness cluster happening. I do not know what to do about it.
I will be entering my 40s next march. I do not want more medical health drama. I want to prevent illness not have more Reactions to illness in my life and in my care.
What else can be done to Prevent/ stem/ reduce, ameliorate my conditions and try to avoid just the wait and see and then by the time something is seen its devastating to my life and my finances. Rather than just wait i want to actively find and get rid of any possible future problems. Life should not be about being sick i should have happiness. but unfortunately the majority of my life i have been nothing but sick. and i think a lot of it could have been avoided if they had detected the problems instead of giving me panaceas.
Please rethink and please help.