Avatar universal

Fatigue, muscle tension, and pain... how long am I sapposed to suffer?

I had my initial thyroidectomy due to papillary thyroid cancer on 01/19/2010 when I was 28, half my thyroid was cancerous with a big lump sticking out of my neck but I felt fine/normal.  Since then I have been plagued with continuous pain, fatigue, and muscle tension (especially my back where the ribs connect to the spine, the tension and pain make it hard to breath)... my endocrine specialist is if anything special ed and definitely not what I would call a specialist in any since of the word.

No doctor seems to believe me when I talk to them about my situation or they don't care, I have since been prescribed 10mg cyclobenzaprine (Primary care) once a day, 500mg naproxen sodium (podiatrist... bunion, arthritis, hyper elastic tendons causing the joints in my feet to collapse under pressure) every 12hrs, 100mg gabapentin 3 times a day from my neurologist for "minor neuropathy caused by improper long term levothyroxine levels... none of which really does much.

I've never been a stranger to pain, I trained for 5 years in martial arts and not the "stop before you make contact" type either.  Also since then my external since of pain is decreased, I can punch myself in the leg or elsewhere as hard as I can or get cut and I can feel it but it doesn't really hurt.

My mental acuity is greatly decreased along with memory.  I can still remember things in detail from before the surgery but can barely remember anything since...  I used to be able to do 4 or 6 digit arithmetic in my head and can now barely manage 2 to digit.  Used to be able to hold 2 simultaneous conversations in my college philosophy class and now I can barely manage one basic conversation...

Does anyone have any brilliant ideas about getting to feeling like I used to?  One can only endure for so long.
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Avatar universal
I understand your concern regarding your symptoms. While hormone changes may be be a factor in these symptoms, this could also be due to medication side effect as well as underlying medical issues. It is important that regular follow-up with your attending physician is done and discuss these symptoms for proper management. While this could be frustrating at times, hang on and stay positive always.Take care and best regards.
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Avatar universal
I have been mentioning it to my physicians all of them actually and as I said in my post none of them want to do anything about it.  My meds listed was recent to my post about a month before my last post, but for the years since the surgery till I made the post all I had was my levothyroxine...  since the last post I saw my endocrine doctor and he said my TSH was ok but my T4 was still out of normal so he said that he was just going to leave my medication where it was.  When I asked him if there was anything he could or would do for my symptoms and he said that his job is to just regulate my levothyroxine to where he thinks it should be and that's it.  and that's what I should expect from a specialist???  what's to be gained from a so-called specialist like this instead of my general physician?
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That was not right about what your endo said. That would encourage me to debate or find another endo
Avatar universal
I am right here with you.  I am going through the same thing.  I am working with a general doctor who is doing all he can but admits he has to consult with other specialists because endo is not his area.  When I do go to an endo they see that I am on a suppression dose of levo for cancer (which I was cleared for in August) and they are done with me when my TSH is where they want it.  Generals want to mask the symptoms (Cymbalta eg.) or find another causes for sysmptoms.  Currently I'm being referred to a specialist for RA even though my symptoms don't fit.  They are grasping at straws.  I keep complaining of muscle/joint issues which seem to be common on these thyroid forums but my endos are dumb-founded by my symptoms.  I have vowed to search for a doctor that is willing to help and I encourage you to do the same.  There are success stories out there and there's no reason we can't be one of them someday. You are not alone - keep educating yourself and fighting for your health.  Good luck.
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Avatar universal
I had same surgery and problems. Found that the 'cancer' was two of my parathyroids had grown into half my thyroid. PT should be the size of rice and are free floating by a thin strand blood supply (thinner than human hair) and can be easily damaged or 'killed'. I had a third removed during surgery as it was the size a pea. Doc couldn't find the fourth (they free float) but more likely the blood supply was cut off. My blood calcium went from 170 to 3 I'm 5 days. Of course I ended up in emergency with major muscle spasms. We cannot live without them! After 5 days I was released at a '5-6' but it should be between 10-14. The problems before surgery were my kidneys (failed suddenly) foot pain like walking on stone bruises. I thot it was neuropathy but was diagnosed with 'planters faciitis'. I took naproxen sodium 600 mg per day for 20 years. That combined with PT (high blood calcium) was destroying my kidneys. After much study on this "sudden and inexplicable' renal failure...what!? One month of dialysis and two years of light to skin sensitivity and uncontrollable itching (puritis). Now I have to take Calcitriol (Rocatrol) .50 mcg twice a day. My blood calcium is now around 9.8 and kidneys (creatinine) level should be 1.0 to 1.5 and GFR 60 or above. All is well. Off HBP meds, cyclobenziprine,  naproxen (kidney killers) and gabapentin (neurontin) and Lyrica (all memory killers) made me crazy and depressed. I finally found a doc who would listen (DO) and after a year my body is working properly! I've been able to lose 65 lbs in one year. I am 58 years old. I do not take ANYTHING without intense research. Doc said I could die if my blood calcium stayed to low-severe muscle spasms in large muscles occur without it. The heart is a muscle. I eat mostly vegetarian and beef. No nuts, wheats or sugar. Especially 'sugar free'. No high fructose, anything with 'ose' after it is sugar. I cannot eat high complex sugars like corn, pasta and junk foods or processed meats. I hope you find a doc to treat you with Calcitriol to bring your BC levels back up. Over the counter calcium will not do it-I've tried. No more steroids! So dangerous! We are just guinea pigs-why they call it "The Practice"
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Avatar universal
Oh and levothyroxine caused major T3 dumping. Thot I was having s heart attack! Went off that to. I take Thyroid Helper since I wouldn't let doc take my whole thyroid out. My hair loss stopped. Actually have finger nails now!  Start here for research by Doctors-not bloggers.
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Avatar universal
Wow....and I thought I was the only thyroidectomy for cancer patient that has needlessly suffers at the hands of horrible Endos....I have been house bound off and on for 2.5 yrs with horrible ankle,feet,calves, knee and hip pains. I have tried everything just about to get rid of these constant reminders of what a bad mistake I made having this thyroidectomy I rather lived with cancer ...honestly this isn't living....I'm 48yrs old and my lower body hurts so bad I shuffle when I walk because I feel like I'm walking on glass.  I was also diagnoised with Psoriatic Arthritis last year they believe this is the cause of my pains .....yeah not buying it I was fine until they yanked my thyroid out.... now I'm 48 going on 98.    

I think my pains are from being under medicated because the accountant of the medical field Endocrinologist think labs are king and what your feeling is your unwillingness to move on....yup here this line of garbage from one of my 4 fired endos.  I'm bitter because I'm just existing not living.
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Grace,  There isn't a day that goes by that I don't deeply regret my TT for Pap carcinoma.  I delayed the surgery for nine months trying to find any other solution  other than TT and to find a compassionate surgeon if I did have to go through with it.  Well, this was all in vain.  The following is a review I posted about my surgery experience on social media:

I regret that my surgeon, Dr. Michael Campbell, did not put as much time and effort into my post-op care as he put into selling his skills and UC Davis's merits at my pre-op. I now have to go to elsewhere for cancer care (including routine ultrasounds) because UCD lacks the resources and, frankly, the desire to help me further. I've also had to spend quite a bit of time amending my inaccurate and biased medical records. My records depict conversations that never took place, statements that were taken out of context, and appointments with specialists that I never had.

When I chose UCD for my cancer treatment, I thought I had found an ally in my battle against cancer. I thought UCD would have my best interests at heart and would provide me with compassionate and comprehensive care. I couldn't have been more wrong. I've spent more time and energy battling UCD (and trying to recover from my treatment here) than the cancer itself.

On the morning of my surgery when I was having second thoughts, rather than respecting my wishes or calling a time-out to regroup, my medical team coerced me into the procedure anyway. No one noticed that I hadn't signed an advanced directive after I had requested it. They couldn't keep the oxygen mask on my face on the operating table because I was hyperventilating. The anesthesiology resident disconnected the tube from the mask and tried to push the tube into my mouth. I thought she was going to break my teeth and I told her that she was hurting me. That was the last thing I recall.

When I awoke from anesthesia, the nurses chose to tell me the results of my surgery right away while I was still disoriented and then proceeded to criticize me for crying. I couldn't get water, pain meds, or assistance with the restroom the day after my surgery because the hospital was reportedly understaffed.

Other than one brief post-op appointment with Dr. Campbell, I had little to no other care, resources, or contact from UCD in the weeks after my surgery. Once I was out of sight, I was out of mind. Dr. Campbell never informed me of my cancer stage and he denied my request for a referral for radiation treatment right after he told me that I should consider radio active iodine.

As for emotional support, keep your expectations low. UCD does not practice integrative whole patient care. Dr. Campbell acted as though I was asking for something unreasonable or excessive when I requested additional time off from work at my post-op appointment to psychologically process the final pathology (lymph node metastasis) and to get a game plan for radiation treatment. At the time of my surgery, UCD's Cancer Resource Center (a tiny self-serve room located inside the Cancer Center) didn't have any information on my type of cancer/endocrine disorders. The Resource Center is staffed with part-time volunteers and not trained medical professionals. UCD doesn't have cancer nurse navigators or counselors of any kind. Their social worker, Jena Cooreman, will refer you back to the Resource Center if you reach out for support. The Cancer Center's website makes it look like they offer more resources for cancer patients than they actually do.

Three years after my surgery, I'm now left on my own trying to figure out what to do with the cancerous lymph nodes I still have that can't be easily treated with surgery or radiation. Dr. Campbell told me that potential complications from further lymph node surgery could leave me disabled. He admitted that he does very few of these types of procedures yet he couldn't (or wouldn't) refer me to another surgeon with more expertise (not even for a basic consult) and he was unapologetic about it. I have no choice but to look for cancer care outside of the UC Davis health system and I'm left wondering exactly what part of my experience here at the Comprehensive Cancer Center was supposed to have been, "comprehensive."

The bottom line: Don't be too influenced by the positive reviews here, by a smooth-talking surgeon, or by UCD's self-aggrandizing image. I made those mistakes. Do yourself a favor and shop around. There are better surgeons and better facilities out there. There are certainly more compassionate and less profit-focused places than UCD if you have a serious illness. Having cancer is hard. UCD will only make your situation even harder.
Wow, that's really lousy medical care you had...so sorry.  What was your outcome did the Dr. Get in trouble?

Fortunately I had a very good surgeon all my idiots came in the form of endocrinologist after surgery and once I hit those magical lab numbers I was thrown away like trash and no matter how much I complained about gaining 50lbs in a short time after surgery and struggled to function like a normal person....If only I had a time machine.
I filed complaints with patient relations to no real benefit.  I'm now a patient of another medical facility out of the area because UCD kept screwing up.  They routinely couldn't find a cancerous lymph node on ultrasound so I finally got fed up and went elsewhere...a hell of a note for a patient like myself who is highly educated, did their  homework, and thought they had chosen wisely in their surgeon and facility.  Oh, and when I expressed concerns about post op weight gain and a visible neck scar, they slapped me with an eating disorder diagnosis and, "cognitive distortions."  Never mind the fact that I have been of average weight my entire life and my primary care doctor of over ten years never noted any such things in his summations of me.  My conclusion: Most doctors lack the social/emotional intelligence and the time necessary to perform their jobs well.  I was treated like I had infected tonsils rather than a vital cancerous body part removed.  My post-op concerns were disregarded and trivialized.  I'm now hell bent on making sure any other prospective patients of UCD know exactly what they're in for.  Knowledge is power.
Good ...people should know about poor health care.   What meds are you taking for hypothyroidism?  I take 2 grains of Armour Thyroid and still wreck with so much pain and your correct when Doctor label you when you complain about weight gain. I filed a grievance on one endocrinologist who called me up out of the blue without my request and he wasn't even my Doctor told me my thyroid numbers are too low and I'm going to die of Heart disease and my bones are going to crumble...I was shocked filed complaint next day barred him from ever calling me or looking at my health record...I'm still annoyed at that.
I take 112 mcg of Synthroid daily and I'm supposedly at "target" level.  I just had a full blood panel done and my Vit D is low so I'm on supplements for that.  Super tired all the time.  My endo wanted me to have full blood work done before reworking my thyroid meds which is fair.  I do worry about being on these meds the rest of my life.  I just go through the motions of life now.  I used to be ridiculously healthy and active.  My thyroid situation coupled with a very stressful job has changed me.  I don't recognize myself any more and I can't believe I have to live like this the rest of my life.  I also can't believe how badly my medical situation was handled from day one.  I had to be my own doctor over and over again.  I caught multiple doctor errors and had to advocate and defend myself against the medical community while concurrently working an unforgiving and unsupportive job.  I feel like I've lost my innocence along the way.  
I can totally relate. I lost my health and my life in a blink and seriously don't know if I can recover since walking and standing are almost impossible due to the hideous pains it feels like I'm walking on glass most of the time and not my endo, Rheumotologist,neurologist, orthopedic or my Functional medicine doctor can slove my problem, I'm still convinced my thyroid levels are to blame for my pains inspite what those labs say I believe I should be given a higher dose of Armour Thyroid.  

I do get tested for T3,FreeT3,FreeT4,T4 and TSH (I fight for the FT3,4 testing) of course endos seem to disagree with Ft3,4 testing they believe tsh is king . Endo also don't seem to understand my medication immunosuppressive therapy I do monthly for my psoriatic arthritis and hormone therapy for surgical menopause... I get sever aniexty when I have deal with Endos and my meds ....if they had it their way I would be on no meds without a thyroid....as they reduce my meds based on tsh...ridiculously bad medicine.

I believe endos beliefs in thyroid testing are out dated and they need to start treating the patients by what the patients are feeling as well as by labs not just labs...I understand my body better then any blood test or endo.  

I too have low levels of Vitamin D and supplement at least until my winter goes away and I start sunning myself.  Do you have B12, Ferritin tested along with your vitamin D? These too have been suggested by many people.
Hi y'all
Because I take calcitriol (D3) i cannot take any other types of calcium, B vitamins, magnesium or iron supplements. I researched and found that any of these interact with it. It explicitly says NOT to take any of these. Although the Endos and docs were giving me them ;/ sigh!
I know how hard it is to find a doc that will listen to you.  They hate it when you say 'research' knowing you went to the internet drives them nuts! Lol. After all, they don't want to hear it! I do not pay any attention to TSH numbers. They don't mean anything-how you 'feel' is your indicator. Most docs-when you mention pain, think you're only trying to get pain drugs and discount it! There IS real pain when our bodies are depleted of blood calcium and our thyroids not working or missing. Luckily my D. O. Doc does understand this. I am on pain meds for hip, leg and foot pain and clonozepam for anxiety. (I'm 59 and this started 10 years ago) The Calcitriol takes care of muscle and joint pain. I eat differently now to control pain by avoiding foods that cause inflammation. Which helped me lose weight. I have to be very careful about my kidneys. Since the surgery, change in diet (whole foods, no sugar, and as gluten free as possible) my energy level is up and my stage 4 kidney disease is now stage one. Foods heal, herbal is better than most drugs, but commitment to health has to be #1. Find what works and stick with it. It takes awhile to see results on some things. Change one thing at a time so you know what is helping or hurting. I suggest a nutritionist approach to better your health and manage  your symptoms. Good luck :-)
Hi Ginger
I never read anything about D3 shouldn't be taken with B12, Magnesium I actually take a D3 with Magnesium from Solgar.  I never the got impression that my Endo,Rheumotologist or my primary care doctor thought I was looking for drugs however, one of my 4 endos thought my muscle and joint pains were me being unhappy with my weight gain even though I have been house bound off and on since thyroidectomy 2 yrs ago....he was a stupid little man...haven't had much luck with the other 3 stooges either they just don't care once the magic lab numbers are reach they discard you like trash.....

What type of thyroid meds and dose are you on and have you gained any weight?
Avatar universal
You're not alone. I had all sorts of vague medical problems like you described and spent almost a year having my primary physician play detective until they found a mass in my left thyroid lobe entirely by accident that turned out to be PTC. Now, my primary takes me more seriously than simply throwing meds at me because she has something to work with.

My endo on the other hand....I'm in the same boat you are. A "specialist" in name only.

Luckily, my surgical oncologist was top-notch. Probably the only thing my endo got right. He was a surgeon who specializes in neck and thoracic surgeries and also happened to be the Chief of Surgery for the medical center I went to. He did his own ultrasound, reviewed the FNA results and other studies, and determined that only half the thyroid needed to go due to PTC. He told my wife and I that many surgeons still opt to cut the entire organ out even when medical evidence doesn't support it because that's been common medical practice for so long. 30 minutes later, we felt assured I was in good hands. He even looked at my prior medical history and saw I had a lumbar laminectomy completed a month beforehand and assured me that, compared to such an invasive, painful procedure that this was going to be a walk for me. He also had no problem when asked reviewing his credentials and experience with thyroid surgeries to reassure us he knew what he was doing.

A month later, I feel like a new man.
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