i am at my wit's end with all of this pain after my thyroidectomy last year
Posted , 41 users are following.
I had my throid removed 13 months ago because i had a nodule that was pressing on my windpipe. I was put on Levothyroxine. (prior to this i hardly ever got sick or had any ailments) All of a sudden I started getting severe headaches..to the point they thought it was temporal arteritis & sliced my head open to find out thats not what it was. the headaches are not nearly severe but prior to this i got a headache once a year if i was lucky. (I am now going to a rhemotolgist because of all of body pain> he tells me both my shoulders are frozen. i have pain in shoulders. knees, tailbone, knees sometimes, wrists feels like someone is constantly kicking me in my ribs & now my feet are horrible especially the left one. they thought it was a stress fracture but they said no. I have never been in so much pain in my life every day. I am a very strong person emotionally. This week alone I have cried myself to sleep three different times. And if all that isn't bad enough. I am only getting about 2.5 hours of sleep a night. not by choice. i can not stay asleep. i have been looking online for days for a forum like this just to be able to have others to talk to who can understand & appreciated how you feel...any one else have any similar story or any suggestions??
4 likes, 58 replies
sue71351 sweetpea2936
Posted
Anyone who has had a TT should read this. It saddens me that I and many others have been over treated. https://www.nytimes.com/2016/04/15/health/thyroid-tumor-cancer-reclassification.html?mcubz=0[/b]
MtViewCatherine sue71351
Posted
Very sad.
courtney5543 sweetpea2936
Posted
I have been on levythyroxine going on 3 years now. Every once in a while my dosage will go up. I'm currently taking 118 mg however the Dr told me I needed to be moved up to a 125 mg I started taking it 2 days ago and had a horrible spell headache, dizziness, heart rate increased. He says there is no way that little bit of a dosage would have affected me in that way... I'm not crazy I know it did. However the 118 is not strong enough I have the shocking feeling at night, tiredness joint aches flu type feeling. Has this ever happened with some one is it better to have this thing removed? What if it's cancer. I'm only 29 this is horrible I forget things all the time. I am not always clear minded what should I do????
marsmntmyr sweetpea2936
Posted
hello, Can i ask? what are the better alternatives or replaçement for levothyroxine? and suggestions about the pains specially joint,knees,shoulder etc. to reduce or remove the pain every night.. it actually hurts a lot everyday. please help..
MtViewCatherine marsmntmyr
Posted
Hi Mars... if you've had your thyroid removed, your best bet is ThyroGold. This is a bovine glandular: made from the thyroid gland of a cow that has been freeze-dried. This is a better choice because the ratios of T4 and T3 are closer to humans than what you get with prescription NDT. So it's less likely to trigger panick attacks or irregular heart rate.
If you still gave a thyroid gland, you can try high doses of essential amino acids. I have advanced thyroid disease. I've had good results pairing the amino with acupuncture.
If you want to go the holistic natural route, you can go to a gluten free paleo diet, and incorporate regular cleansing into your lifestyle.
These are some of the things I've found helpful in healing my thyroid disease. Hope you find this helpful!
MtViewCatherine marsmntmyr
Posted
jan.h sweetpea2936
Posted
My sympathies X you're not alone ....I had a thyroidectomy this year. I'm on levothyroxine 100 mcg. I had a blood clot, and have to take heparin for a while now.
I am keeping a diary of my symptoms, but my Endocrinologisr dismisses anything and says it's not my thyroid now!
i get bad gpheadaches every other day, which lay me low and make me so miserable,
i had 2 hours sleep every night for days, like you, I can't sleep, yet I'm so tired.
my hair Isi thinner and a bit frizzy.
My tsh is now 0.74 ( was 0.01 when I was really ill) free T4 is 12.2 .
no mention of T3 .
im due to be signed off from endocrine help now as I'm " doing great"
its a new party of illnes in my view and I'm very perturbed, I so hoped to feel better after surgery.
anyone else advise???
andee43686 sweetpea2936
Posted
HI ALL,
looking at these dates I pray someone is still on... I had a total thyroidectomy 2 months ago and I FEEL HORRIBLE! Severe headaches my upper body ( CHEST, BACK AND ARMS) left side is intense) is in such pain I pop an asprin because im afraid of heart attack. had 2 EKG's and labs no heart attack but the pain! Before thyroid issues I was healthy! i had enlarged thyroid, large nodules and hypothyroid.
2 months ago had TT and now on 125 LEVOTHYROXINE. My back, chest and shoulders and jaw often ache. ITS SO SCARY! Even shooting pains on my arms.I'm newly 38. Im tired of being looked at by docs who shrug there shoulders. I have never heard of frozen shoulder... what are thise symptoms? I have apointments with specialists coming up but i feel so bad. DAY AFTER DAY no let up with pain. IM grateful that I found this forum! Anyone else had upoer body pain so bad they thought it was a heart attack?
anna35188 andee43686
Posted
I just had mine removed less than I month ago and thought I this was allnstrange I have an appointment hopefully soon. Hoping doctor can help in will let you know
MtViewCatherine anna35188
Posted
After reading posts from people who've had their thyroid removed, it seems apparent that thyroidectomy should only be done as a last resort.
Lilly07 andee43686
Posted
hi
I had a TT 2 months ago. I'm 42 y.o. I was diagnosed with papillary cancer stage 1. my main concern before and after surgery are the pains and panicking attacks that took me to the ER more than 4 times plus i had to call the rescue like 3 times to my house because i thought i was having a heart attack. Now i know the symptoms better and can control it a little bit but I'm always in fear that i could be mistaken the symptoms and actually be having a heart attack, to the point that i went to see a cardiologist and had a stress test and echo with normal results. i feel foggie must of the times. i can barely sleep, i have pain in my left side, arm, armpit, ribs, breast like a pain with burning sensation. some times a dull headache and a little bit of palpitations. i just don't feel like myself anymore and on top of that depression. i feel like crying all the time. i started on a 200 mg dose, i felt like that and when i thought i was getting better on these symptoms my Dr. lower my dose to 175 mg. and i feel like I'm starting again to battle this until my body adjusts to the dose. i know when the time comes to adjust the Med again hopefully it won't be this bad. i did a research on Levothyroxine side effects and it is scary all the side effects that may cause. But at the same time i feel like it was the best way, i had 4 malignant nodules growing and some others as well as Hashimoto's. reading these blogs and looking for answers i know I'm not the only one. And what all of you say about the Drs you r right. my surgeon was like " this is going to be a little painfull after surgery you r going to be cured." nothing on what to expect after the surgery and how your body will/ might react. at least to give a heads up of what was coming. I'm always praying and wishing to go back to at least of half of how i was before this.
anna35188 Lilly07
Posted
i had. tt sept 26 2018 and just starting to feel better last 2 days. had severe anxiety before tt 24 hours a day had no relief now on effexor. i had papillary cancer and had new lymph nodes appear in throat area ultra sound confirmed begnin. im terrified its a daily battle.
anna35188 Lilly07
Posted
i also forgot to mention i have also had ecg and echo and waiting for results. i really understand your anxiety. like i said i hate that i had to rely on antidepressants but the constant worry was draining and caused more panic and anxiety. i hope this helps you.
jaunette99167 sweetpea2936
Posted
Hi sweetpea,
I had a partial thyroidectomy March 2019. I was told that my neck stiffness would be temporary as its a part of the surgery issues; that it would last only a few weeks. Here I am 8 months post op and i have days were i cant turn my neck and my voice goes completely out. I used to go to Physical Therapy to try to get proper range of motion in my neck and it helped. I also used dry needling which is where great improvement was seen. It appears that still, the stiffness in the cold weather and aches in the upper neck area are constant. I do have mood swings and a little weight gain but its hard to cut coffee cold turkey so I am working on that. I wouldn't suggest anyone do levothyroxine as i had to swing to the Synthroid brand as the generic was causing me to have severe rashes and welts. i have to make sure i take xyzal when I take my thyroid meds because my skin problem is starting to be too much. I'm praying for a great change as this surgery was said to make it better, sentence.