Post Thyroidectomy Problems

Partial thyroid removal Unbearable tingling hands feet Nausea Weakness Fainting Commenced 6 weeks post sx Anyone else out there?

I had my total thyroidectomy back in 2010. I don't want you guys to have nope hope at all after reading my post, but I will give you my story. I was diagnosed with thyroid cancer, long story short, I had a total thyroidectomy, and it turned out I never even had cancer... A MIS-DIAGNOSIS! I urge anyone to get a 2nd, or even a 3rd opinion before doing it, but I'm no doctor to give advice. Post surgery I had the following problems.. Breathing Major fatigue Muscle cramps Mood swing chest pains High blood pressure Weight gain Cholesterol problems Cough when I look down (damage to neck somehow) Depression Night sweats Not able to sleep well Forget things Can't concentrate No desire to do anything Unable to work The sad part is, I have not gotten any better. 3 years later I am here struggling with my problems. Been through countless tests, many doctors, and still nobody has an answer. Every doctor eventually gets to the conclusion of, there is something wrong with you cause by the surgery but don't know what it is. I was in great health prior to surgery. Most doctors told me that they have never seen anything like this, yet here I read week after week people talking about the same problems or similar ones. I almost feel like we are an experiment. One thing that helped slightly, and I mean very slightly is my thyroid medication. I was put on Tirosint, which is the best thyroid replacement thus far for me. Sadly it has not helped me get anywhere near even slightly better. I'm slowly starting to accept the fact that no doctor had figures out what causes us to feel this way. I also am starting to accept that this is how I will be for the rest of my life. I pray daily to get even 50% betfer, but it just isn't happening. If anyone has these problems and got better please share. I am looking for any life line I can get. Don't accept any doctor telling you its over, keep fighting for your health. I know some people have great luck after surgery, and make a fast and full recovery only taking mess and that is it. But the rest of us suffering need answers!!!!!!!!!!!!! I might have missed some stuff, as my memory isn't what it used to be. I want to feel like I did before my surgery :~( Best wishes to everyone

Sorry for the spelling and grammer. Wrote on phone.

how are you doing now?

I had a total thyroidectomy in July 2013. I am on 300 mg of Levothyroxine. I still have severe cramps, very fatigued, and my weight stays about the same within 3-5 pounds. My joints hurt all the time. I get depressed at times, but I keep hoping that they can find the right dose for me.

I've been in the same situation as you! The problem with synthetic thyroid hormone drugs (patented in 1950's?) are that they're instant release so they might work great upon dispensing, but then they will fizzle out by early to mid afternoon (fatigue sets in). A doc might suggest taking a second dose in the afternoon because of this, but the bottom line is that the thyroid gland does not work this way because it releases hormones as the body requires them so an extended release is the key component that's missing. Internet search Specialty Compound Pharmacies in your area then speak directly with the compound pharmacist to ask him/her which are the top docs in your area who prescribe specialty compound T4/T3 hormone prescriptions. Your T4/T3 prescription can be compounded with extended release! Be sure your serum labs include T4 Free, T3 Free, and Reverse T3. If a doc is just ordering TSH, T4 Total, and T3 Total, run. Best wishes for better health.

I've been in the same situation as you! The problem with synthetic thyroid hormone drugs (patented in 1950's?) are that they're instant release so they might work great upon dispensing, but then they will fizzle out by early to mid afternoon (fatigue sets in). A doc might suggest taking a second dose in the afternoon because of this, but the bottom line is that the thyroid gland does not work this way because it releases hormones as the body requires them so an extended release is the key component that's missing. Internet search Specialty Compound Pharmacies in your area then speak directly with the compound pharmacist to ask him/her which are the top docs in your area who prescribe specialty compound T4/T3 hormone prescriptions. Your T4/T3 prescription can be compounded with extended release! Be sure your serum labs include T4 Free, T3 Free, and Reverse T3. If a doc is just ordering TSH, T4 Total, and T3 Total, run. T3 is the gas pedal to your body's proper functioning (It's the active hormone!) and you're only taking T4 which must convert to T3 so possibly your body is not converting which causes a myriad of symptoms. Best wishes for better health.

The problem with synthetic thyroid hormone drugs (patented in 1950's?) are that they're instant release so they might work great upon dispensing, but then they will fizzle out by early to mid afternoon (fatigue sets in). A doc might suggest taking a second dose in the afternoon because of this, but the bottom line is that the thyroid gland does not work this way because it releases hormones as the body requires them so an extended release is the key component that's missing. Internet search Specialty Compound Pharmacies in your area then speak directly with the compound pharmacist to ask him/her which are the top docs in your area who prescribe specialty compound T4/T3 hormone prescriptions. Your T4/T3 prescription can be compounded with extended release! Be sure your serum labs include T4 Free, T3 Free, and Reverse T3. If a doc is just ordering TSH, T4 Total, and T3 Total, run. Best wishes for better health.

i have little faith left in docs and endocrinologists.. I find them useless. wtf did they learn in school? I know more from googling for years

yes I did and was told at the time that it was female issues yet my hormone levels were fine. I am still having early morning sweats and it has been all most 5 years!!!

I too am having similar symptoms after my thyroidectomy In January and today it's April and still I am having issues. The issues are fatigue, weakness, anxiety, mood swings, hot flashes, and migranes, just an over all heavy lathargy. After surgery I have doubled my caloric burn by walking an avg 20miles a week. Yet I can't lose the weight gained through out this transition. Doctor tells me I have become insulin resistant and my T levels should be at a max of 2-3 but mine were at 7.8 last visit. My Endo, to prevent shock to my system, bumped me from 100MCG Levothyroxine to 112MCG synthroid because I noticed it was more effective than the generic when I got to sample it. When I first got the surgery I was on Levothyroxine 125 and it really caused me to pass out and heavy chest pains. Hence the slow adjustmrnts that take 6 weeks to see its affects. My primary doctor told me this will be a 6 month process to dial the meds in the right when I went for a second opinion and he stated I should not stress (tell that to my credit report that says bills are going unpaid). This is so hard on me because in the past I get sick only one time a year and lately the inconsistencies in my health have me in fear of going back to work due to safety issues. I am seeing more good days than bad but this week has been a tough week. I did not have enough energy to exercise much. I am glad to see I am not going crazy and that I am not the only one with this but you would think it there would be a faster solution. I thank you for your post because I really thought it may be other issues not just my thyroidectomy. So it seems my doctors are right, it's just being patient and taking it easy until the right dosage is determined. Good luck.

Hi.. i wish have some new posting in here, i'm going true the same things you had a year ago and i wish you still checking this page so i could know how you are doing...

I Have a Total Thryroidectomy about 2 weeks ago and i'm having lot's of changes, and pains and different things happening to me, i wich more people could talk about their experience and help me

Ask your GP to do TSH PTH LFT ESR CRP FULL BLOOD COUNT from the ESR and CRP you see if you have inflammation and how your immune works , the TSH the thyroid test and T3 T2 T1 what ever there PTH IS YouR parathyroid glands small 4 pea size glands located behind your throat stack I your thyroid , if low or high , it is complex case , I have complete thyroid removal and I know how it feels , I was having cancer there , certain other blood pressure medicines may cause interactions and blood thinners , investigate with your doctor close ,B12 injection can help I use it to boost your blood up , does more than boosting all the B group vitamins , do some diet ie well I found that my bloding is a cause of diverticular Colon use more fibre in your diet , calcium intake carbonate or citrate and D need to be monitor with your doctor found one good doctor and stay with him , in today's western society this is a challenge, but it is possible , I get hot flashes , irritability , hot and burning sensation on the colon , anxiety , pins and needles left side often , sometimes normal sometimes up and down , the unwise doctors will tell you have anxiety and you are mental no is no true they are mental and greedy , the thyroid is a main gear for metabolism and control lots of functions as the parathyoids make sure you do not have papillary I was not aware for more than a year and doctors was telling me mental anxiety , easy diagnosis , hormones are chemicals who affecting the total well been of us like watch dogs inside a house as the body is a house the brain is located on that house reside on that house the word you and me , any imbalance in that house and we feel the difference on the spot , we made this way by the manufacturer, drink lots of fresh water is well and do the test if you are hypothyroid, or do ultrasound what ever it takes , avoid worry , what you do do it wisely just as a builder building a good house from time to time do some remedial massage Chinese are very good on that , eat small regular meals , and walk lots instead of watch movies as many do , if your mind say I do not fixing the problem, respond we looking in to it and we found it soon , respond to your subconscious mind , in a simple way what ever it takes with the assistance of a good doctor which is not easy to found those days , unless you have fat wallet , some do help but the system is Made for the wealthy not for elderly or poor , so try your best take care

My doctor will not prescribe the Armour. Who do I see to get this changed?