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
Your story is my story. As I read I thought I was reading my own. I had my thyroid out in 2010. Same body pain from head to toe, with frozen shoulder on my right side, and find it hard to walk. I can barely touch my achilles heal without going through the roof. I look like an MS patient when I get up in the morning until I get moving. I havent sleep well at all since the surgery and I die from overheating, and I was always one to be cold pre-surgery. All I can say is I'm sorry. Physicians dont realize the impact a complete thyroidectomy has on entire being mentally and physically. I was the same as you a vibrant unstoppable woman with maybe a cold once a year. I was always so healthy. I am a little bitter. My endrocrinologist has said there is no corrolation with my ailments and my thyroidectomy. Cleary there is. I am on natural thyroid medication, so i am not sure if the Levothyroixe is your calprit. I was sent to a rheumatologist and she felt it was metabolic,. My suggestion is keep moving forward, excercise and dont let it get the best of you. I have had to accept the new normal. I wish I could be more optimistic.
susan38558 sweetpea2936
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Hi everyone, I'm 35 and have been healthy all of my life! Was always on the go never ran out of energy. I had a Total Thyroidectomy 2 weeks ago and have been miserable every since!! The worst part is nobody really explained much to me it was a rushed thing. I went to see my surgeon last week and he told me everything was looking great and retired that day! To top it off my Endocrinologist is out of town for the next month! So my appt isn't until Oct 6, the surgeon started me on 100mg of levothyroxine. I have had no blood work or anything! I can't sleep, I have constant pain in my left ear? And I feel like an 80 year old, I can barely drive my kids to school! If I had it to do over again I would have never had the surgery! I would rather die than keep feeling this way, I know my husband is at his wits end BC it seems like all I ever do is lay around a complain. I really am glad I found this page and it isn't all in my head! I have terrible hot flashes one minute and I'm freezing the next? Every day it feels like another part of my body is added to the growing list of problems, my regular doctor acted like I was crazy the other day and her replay was maybe you just need to give it some more time and see how you feel in another week or so...Really!?
MtViewCatherine susan38558
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Hi Susan, your story is typical. Interesting that you mention being all rushed, things weren't explained, doctors act like you're the crazy one. Simply follow the money and observe the system. EVERYBODY GETS PAID WHEN SOMEONE HAS SURGERY!!
Start here: get it? The system is dysfunctional. If they really explained everything, no one would get the surgery. It's too risky and causes more problems than the disease.
On top of it, none of the meds work right bc none are bioidentical. This is the truth of what thyroid disease is, so if you want to get well, you have to understand the problem.
mary60071 sweetpea2936
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Hello sweetpea2936.
I have been on levothyroxine for the past 2 years. I haven't had surgery but I have had all the same problems, headaches, frozen shoulder, tingling in fingertips & toes, painful allover body. Morning I could hardly walk for the first hour of getting up. Bedtime I actually would suffer from hip / leg pain and bouts of feeling very overheated. I had bouts of problems during swallowing and felt as if everything was getting stuck in my throat. All of this and more and now couldn't imagine what it would be like having surgery and dealing with anymore problems. My energy levels was so low, that just to get up from sitting was major work for me. Sleeping at night was almost impossible, but during the day while the children was in school, I would sleep off and on to the point I had to force myself to get up (most days I fell at that). I also was having problems with vision, BP, etc. ... taking meds for everything. My doctor decided to send me to a sleep doctor due to my red blood cells being so high and couldn't figure out why. Come to find out I would stop breathing 37 times an hour while sleeping plus my oxygen level would drop from 98 to 80 and my heart rate would rise to 106. I now wear a mask at night that opens my airway up while sleeping or napping. This was causing all my problems, and slowly I'm getting back to normal and I'm almost back to taking only meds for my thyroid only. Starting to feel less tired, more energy, sleeping better and spending time while children are at school getting my house back in order instead of sleeping. You might want to have this checked out. Not saying this could be what it is, but I would have never thought not sleeping restful could cause so many medical problems. Good luck!
jo77707 sweetpea2936
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Hi sweetpea
I also had a total thyroidectomy last oct 2015. I had a deviated trachea and my surgeon removed my whole thyroid. Before this I wasn't on any medication and I felt good.
About 4/5 months after my op whilst on 100mg of Levo medication I was in total pain in my joints, putting on weight ( I had never been overweight) also constipated and foggy thinking. I had a job to live my life. I never had headaches though like you have.
Enough was enough I saw an endo who was useless so I decided to treat myself.
I didn't want to live that way.
I bought NDT from abroad in June 2016 and now take 2 grains per day and I feel 85% back to normal. Weight OK sleeping OK doing my Yoga again.
It can take several months to adjust the dose but it's worth it. Hope this helps.
By the way my sister is still on Levo and is not good.
MtViewCatherine jo77707
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Jo, you're absolutely right! I'm much better now that I've chucked this toxic levo!
I know the damage from 2 years on the levo will likely take 10 to recover from. A horrible prognosis at any age.
Once on the levo, my thinking was so cloudy, and my body so bloated that I couldn't think straight enough to figure anything out. I'm not sure why doctors don't want to recognize the dangers and ineffectiveness of these drugs.
j82545 sweetpea2936
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MtViewCatherine j82545
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Hello J82545,
Do the math, as they say. I have severe thyroid disease. After reading the many posts here, I would never under any circumstances consider a thyroidectomy. There are many alternatives for surepgery, as thyroid disease is autoimmune disease. Autoimmune disease is caused by toxicity (simply put). Start from there and put a wellness plan together for yourself.
You are fortunate. You are in good health and have normal thyroid function. That tells you that you also have a lot of very healthy thyroid tissue, that you wouldn't want to lose.
Unfortunately, as surgical procedures go in and out of fashion, one of the current trends is thyroidectomies.
I encourage you to follow your gut. Don't sit back and do nothing. Do some research and find some healthy solutions you feel will work. Thyroid disease take years in the making, so remember that healing also takes time. It's important that you take preventative action if you wish to slow the progression of the disease because you have a large cyst, which indicates a problem. Unfortunately, with thyroid disease, you can't always go just by blood levels as an indication of thyroid health. If you read through the many posts here, you'll find that normal thyroid levels opinion the blood can often accompany advanced thyroid disease.
The T3 you ask about is a short acting, but much more powerful form of thyroxin than T4. Your body makes many forms of thyroxin, and all work together, though T4 and T3 are most prominent. T4 is believed to be the primary thyroxin produced by the thyroid, with conversion to T3 happening in various cells in the body, predominantly the gut and liver. T4 last 2 weeks in the body and is not as powerful a form as T3. T3 only lasts 4 hours in the body. And in fact, rT3, reverse T3 is actually another form of thyroxin that binds up highly active T3 to help make sure the levels stay in balance. The various forms of thyroxin work together in your body, along with the rest of the endocrine system to regulate your hormones and energy levels. This system is extremely delicate, more so in women, and is therefore also extremely difficult to balance, once thrown off.
Although there are many choices for thyroid medications, there is no truly bioidentical form available. Since only a slight change in thyroxin produces a very different functioning molecule in our bodies, you can see why these non bioidentical treatments are not going to work the same as your own thyroxin.
haley31203 sweetpea2936
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I had my thyroid removed on Feb 9, I know I am just in the beginning stages compared to you; but I am having the foot pain as well. I have seeked out 6 different doctors, all telling me it takes time because I have low calcium. They continue to tell be due to the procedure calcium is naturally an issue could be short term, but could be long term. I thankfully have had no other consequences other than the foot pain but it is very bad. It acts up daily and gets worse when I am cold, with the natural symptoms of the thyroid issues itself I find myself cold very often so this is like a losing battle. One doctor I saw was a podiatrist, I actually saw two podiatrist but the first one seemed to have no idea what he was talking about. The second podiatrist was very imofrmative, even though he still blamed the calcium levels he suggested I try out shoe inserts, never walking barefoot and only wearing supportive sneakers with the inserts in them. He also suggested rolling them (like they would suggest for plantar fasiticis) and ice packs. I do not do the ice because honestly, I can't tolerate it, but the inserts have helped provide some relief. I use a tens unit from time to time, simetimes it works sometimes it doesnt.
Another thing I have noticed about myself is I am absolutley never hungry. I have to force myself to eat daily, so I eat when I need to take supplements of calcium as it helps it absorb in your system.
I use a heating pad on my feet (complete opposite of ice I know) but it has shown to provide relief multiple times.
Sadly, I dont think I can provide you with a solid suggestion other than continuing to search for various doctors who will finally help you.
Also if you have a facebook I can not stress enough joining "Thyriodectomy Group" It's a closed group but I have recieved so much support and various suggestions and ideas on it.
We are all in this battle together, I hope you find relief.
MtViewCatherine haley31203
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Haley, if your feet are hurting, take it seriously. I was on the levo for two years and NDT three. I'd never had a broken bone in my life. But wound up with multiple breaks in my metatarsals, resulting in over a year and a half of not being able to walk. I don't know what the solution is, but I felt the foot problems were related to the meds and went off them, in lieu of less harmful treatment.
I also care for my mother who's had her thyroid removed. I switched her to ThyroGold with amino acid supplements. I read that tyrosine deficiency can result in both kidney and thyroid problems, both which she has. I've found the amino acids extremely helpful for myself as well, as they seem to alleviate all the gut problems we thyroid patients seem to have.
laura80983 sweetpea2936
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I've just had partial thyroid out 3 days ago I'm dizzy falling over and sleeping constantly I'm not sure if this is normal can anyone help they say my blood tests are normal
katie22660 laura80983
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sophieannejune sweetpea2936
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Hi..I'm wondering how you're doing now.
This discussion is scary to me as I've just seen a surgeon about doing a total thyroidectomy. I was going to do RAI but the though of radiation was too much. I can't take ATM's as they put my body into constant pain. The surgery is because of 2 toxic nodules. Doesn't seem there are any other alterntives..are thre?
katie22660 sophieannejune
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MtViewCatherine sophieannejune
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Everything I've read in the thousands of posts here indicate thyroidectiomy and radiation only as a last resort alternative to death.
sophieannejune katie22660
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sophieannejune MtViewCatherine
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So I have to ask what the alternatives are, if you can't take medication and are having many symptoms that make daily living next to impossible.
MtViewCatherine sophieannejune
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Sophie, hypothyroid disease is autoimmune. Your thyroid sits smack dab in the center tif the highest concentration of immune activity in your whole body. Thyroid disease generally involves inflammation, cysts and other irregular cell activity.
So, the alternative is to treat the immune system. Immune disease is caused by exposure to radiation, chemicals and microbes. So to calm the immune system, start by cleaning up your diet, then add cleansing the body of built up chemicals.
Eliminate gluten completely from your diet. Try to eliminate grains completely. Find herbs and supplements to support your system.
The supplements I've found most surprisingly helpful are boron, essential amino acids, liquid chlorophyll from mulberry leaves, turmeric, activated charcoal. You'll meds also want a good quality multimineral and multivitamin.
If your thyroid is out, your adrrnals and the rest of you're endocrine system also need support. There are many books on hormones. I know nobody want some to read a Hormone book. But there's are some good one side out there.
If you need sources for good quality supplements or for a good read, I can pm you.
katie22660 sophieannejune
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I just wanted to make sure you did not worry about the RAI if you had that done as it is really no big deal.
sophieannejune MtViewCatherine
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Hi Catherine. Thank you for the information. In my case I have hyperthyroidism that was not caused by an autoimmune disease (i was tested). I have a goiter with a toxic nodule. The endo said meds maystop the symptoms but the nodule will never go away and she said i wouldn't want to stay on the meds forever due to potential for liver dmage, etc.
sophieannejune katie22660
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Thanks Katie, I appreciate you sharing your situation. It's so hard when the surgeon says, you do the surgery, go on meds and life goes on. Never any mention that it can take time to get the right dose. My mind is spinning right now, with things to consider. I am glad you're doing well.
MtViewCatherine sophieannejune
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HinSoohie, I wouldn't be so quick to dismiss autoimmune disease... I also tested negative for antibodies. However, I can assure you that I have autoimmune disease, and YES!!! The toxic nodule!
My sense is that, organs will store toxicity. I was able to reduce the nodule size substantially and was able to completely get rid of the calcified portion of the cyst. The calcified portion was extremely toxic, and when it released, I was pretty sick from the toxicity. But it passed. Better to have it gone than hold onto the poison.
The toxic production, yes, I feel like my thyroid was making really toxic stuff for a while. It doesn't seem to be so bad now.I I feel the production of toxic stuff is a combination of insufficient/incorrect precurser nutrients and buildup of stored toxins, as the thyroid absorbs them and takes them out of circulation to protect the body.
Give it some thought, as this approach of detoxing/supplement with Traditional Chinese Medicine has worked for me and has been far more effective than anything else... and I have severe, lifelong thyroid disease.
sophieannejune MtViewCatherine
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Hi Catherine. Now I'm very interested. How long did it take you to detox the bad nodule? Were you having bad symptoms? I'm dizzy all the time. Were you ever retreated for autoimmune? And you take no meds? I would be very interested in reading about the Traditional Chinese Medicine..please PM me...i would really appreciate it and thank you!!!!!
MtViewCatherine katie22660
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Hi Katie, fibromialgya often accompanies thyroid disease. However, please do notice that one of the many side effects of is fibromyalgia. Check the manufacturer's website or the insert from the pharmacist.