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??
Hi Sweetpea- Yes. I had headaches so bad I thought I was going to have a seisure. Maybe I was having seizures. Hard to tell, since I could hardly get out of bed the whole time I was on the stuff, muscle and joint pain, fibromialgia type symptoms where everything hurts. This stuff didn't work for me and made things way worse. I got back on a compounded NDT and after 6 months and some cleansing, I'm starting to feel like myself again. The stuff seems to stay in the system a long time, and really wreaks havoc with the immune system and the hormone system.
To recover, I also did acupuncture, major cleansing, completely gluten-free diet, boron supplementation, and of course the Natural Dessicated Thyroid without any allergenic additives. Turneric or turmneric with bromelin will help with the inflamation and all over pain.
Hope that helps. No, you aren't crazy. Yes, this stuff causes major problems. I've never met anyone who could take the synthetic. They all say it doesn't work. The drug companies basically take a natural product and tweek it so they can get a patent and make it in the lab. So by definition (a tweeked hormone) it can't possibly work properly. One argument is that the synthetic is better regulated for the dosage concentration. Totally not true, since (at least her in the US), drug companies are allowed to have a 10% variation in the concentration, so you could get as much as a 20% difference in dosage (with the synthetic) between batches. So even the dosage argument isn't valid.
From my experience, I'd say get off the synthetic ASAP and onto a prescription natural dessicated Thyroid. If your doctor won't work with you, find one who will. At the time I was first dealing with my thyroid issue I was also going to a counselor, who advised me to shop doctors unitl I found one who could help me. That was great advise! Don't waste time on doctors who aren't helping. Your health is too important!
Good luck!
Catherine
Hi i have been on levo for 22 years and also suffered some joint pain but mainly mega headaches 10 years for pain, last year i tried NDT it cured the joint pain some what but the headaches remained and i also had alot of breathlessness and heart flutters on the NDT so i decided it was not good for my heart so I have returned to levo 100mg, but instead of taking it all at once i take 50 before i get out of bed and 50 at night as i get into bed you must be consistant with hormones and I cant beleive it I dont get any more headaches its a mirical . my brain can not tolorate 100mgs all at once try it it may work for you give it time to settle please let me know how you get on with the split dosing good luck by the way are you in range the insomnia sounds like hypothyroid also stop all caffinated drinks ie coffee tea coke cut out cheese nuts and chocolate these will give me headaches even with split doseing the levo or try Natural dessicated thyriod NDT also if you are on too much levo for your body not on paper ie blood test results, you can build up RT3s wich will stop t3 getting to your cell causeing all your joint problems im sure thats what happend to me because im quite ok now
Hi Sweetpea2936!
I also had a total thyroidectomy in June (10 months ago) also due to Multi nodule goitre, I had many many nodes on my thyroid gland almost so many that doctors were surprised, and over a 10 year check up process initially from 4 nodes increasing to countless amounts where it was putting pressure on my windpipe, so I opt for a thyroidectomy.
And ever since my life has basically been HELL!
NOT TO MENTION THE ILL TREATMENT FROM MY GP!
My Energy levels are low. Mood is low. Body always aching. Unstable emotions, feel sad a blue. Hair slightly thinning. gaining weight and I've just recently found out my liver function tests have come back abnormal.
I mean I'm only 23 and I almost feel like I'm 63!
I feel like these symptoms have only started after my totally thyroidectomy.
I really hope you feel better and do you have any tips which make you feel better ?
one thing i forgot to add...my joints are almost normal in the morning but at night starting around 4:00 they really start hurting & by about 8:00 I am in almost excruciating pain. this has become a nightly ritual for a few weeks now. any one else experience similar issue?
Hi SweetPea, When I first opened this discussion, I thought I was reading my own post. I too had a large nodule pressing on my windpipe and was healthly vibrant woman who was unstoppable prior to my surgery. Just recently I had frozen shoulder for 10 months that was so painful, I could not sleep, Your issues are very similar to mine. I have to laugh , because I was also sent to rhemotologist. There are so many of us with the same issues on synthroid you would think that all the intelligent physicians would realize that there is a link to all these ailments and our metobolic system. When I first had my thyroid removed, I couldnt walk. That was 4 years ago, and to this day cannot touch my achilles heal or calves with any pressure. My dear sweetpea, I feel your pain!!, and I understand it puts you in a state of chronic depression. I have read replies you have received regarding NDT. I tried NDT but got worse headaches and couldnt tolerate it...that was just me. Everyone is different but worth a try. After 10 months of suffering with frozen shoulder I asked my doctor to put me on cytomel. I take 15 mcgs of cytomel during the day and 88 mg of synthroid at night. When I first started taking cytomel within a week my frozen shoulder got better & 80% mobility back within 2 weeks, I couldnt believe it!! I had to wonder if it was just a coincidence. I had truly suffered from pain and discomfort for a long time. I went to see a shoulder specialist and asked her about the link between hormones and frozen shoulder. She did tell me that many of her patients have some kind of thyroid issues and there is a link but she wasnt sure why. I would say either try NDT or cytomel and see if there is a difference. I am sorry you are going through all this. I wish I would have been more knowledgable regarding thyroid before I had it removed. There is so much that doctors dont know or dont tell us.
Hello Sue- Thanks for mentioning the frozen shoulder. I have had repeated problems with my right shoulder for many years. It never occured to me that it could be related to my years of thyroid problems. Looking back, when the fromzen shoulder first started, I thought it was a residual effect of a car accident I'd had several years prior, but I'm realizing it actually coincided with a time period when I know that my thyroid was very low. Does anyone else have a correllation between shoulder and thyroid? Really it isn't a big stretch, since anatomically, the shoulder is very close to the neck.
Hi Sweetpea - Don't know if you've seen my posts. But my doctor put me on a very small dose of this stuff some months back. I'm 65 and felt brilliant before I started taking this stuff. After a month of it I went back to my doctor and told him it was making me feel ill (you can see my ealier posts for symptons) but he persuaded me to give some time and started to prescribe one more drug to ease one of the effects.
After that I made the decision to come off the whole lot because it was affecting my quality of life severely. It's now a month on from when I stopped taking this stuff but I'm now back to normal (p.s. I power walk. run about 18 miles a week and do a whole load of other outdoor activities). It's probably going to affect me down the road but my quality of life is great once again.
P.s. I wouldn't advise that you do what I've done though for obvious reasons.
Best wishes
DW
hi Dawn. no i have not seen your earlier posts. I am new to this forum. just discovered it a few days ago. how can i find them
I have been using NDT (Armour thyroid 60mg) for about 8 years and over that time I muscle and joint pain, fatigue etc have got worse and finally they said I also have fibromyalgia. I am 63 years old and the doctor have said that NDTs can give older people heart problems. My blood test have shown that my thyroid levels are good, but still I am having similar problems to you. Recently I have just had surgery on my second shoulder to try and reduce the pain.
A week ago I changed my thyroid medication from Armour thyroid (NDT) to Synthroid for two reasons, one because the Armour is not preventing fatigue, sleeping problems, pain, lack of concentration etc and the second my concern that it could cause heart problems (which is the last thing I need).
After reading comments about Synthroid and my experience with Armour, I get the feeling that alot of the so called specialist doctors do not have a clue on how to treat these problems. They seem to go through a few steps of treatment without fully understanding or thinking each patients individual syptoms.
I hope things start getting better for you, if you find any combination of drugs which help you, could you please post them here so that I can get my doctor to try them.
Thanks Dave
I Can totally relate to you,and honestly feel your pain.I ve been diagnosed with graves disease,(along with a prior diagnosis of fibromyalgia).In October 2015,I had a total thyroidectomy.After surgery I was placed on 175mg of levithoroxin,and 10 mg of cytomel daily.I felt better before the surgery,than after.I have constant headaches(along with a brain fog), daily.My finger tips and toes stay tingley and numb. Constant shooting pain in my throat,head,knees and back,just to name a few...I'm always extremely exhausted, due to lack of sleep.I'm lucky if I'm able to get 2 decent hours of sleep(when I do expirence twitching and muscle spasms).My skin is extremely dry,and I have lost a considerable amount of hair.My eyes have even changed drastically.To top if off,I have gained 25lbs in 6 months.I can go on and on....I would like to know are there others expirencing the same complications such as myself.And also are there any other medications and or recommendations someone could suggest.I really feel as though I'm by myself.I'm mentally and physically exhausted!!!!
Hi have you had your calcium levels checked as I've just had my total thyroidectomy and after surgery while still in the hospital I started to get really bad pins and needles in my feet and hands and they done some further test and discovered that my calcium levels were dropping dramatically because they had removed my calcium glands as well one of the risk of surgery and they put me straight on calcium tablets and another tablet. But they went through with me all the symptoms of not having the glands and the biggest warning sign is pins and needles but other symptoms are hair thinning and bone problems among other stuff and after a few days on the calcium tablets I feel loads better still got some bone pain but pins and needles have gone and heart beat doesn't feel strange but I have been told I will be on these calcium tablets for life and any sign of pins and needles to get straight to doctors as it's one of the symptoms of my calcium levels dropping x hope this helps x
Hi all,
My story is very similar and for years after the surgery I was in deep pain, insomnia, depression and mood swings. I managed to improve my well being by taking t3 hormones along side with t4 and splitting the dose in 3 (morning lunch and evening). One of the worst was the insomnia and it got better after i started to take hormones in the evening - i believe it was caused by hypothyroidism in the night as the hormones were consumed during the day.
Other things that help is physiotherapy, exercise (stretching and core muscle exercises), light healthy diet (veggies fruits, less sugar and fried stuff) and being around positive people 
.
For me it is more like a journey to improve my life quality day by day. I do not expect to get back to my old self as that just adds pressure on me but would be nice if i can get there.
Good luck and i am hoping that my experience can be of help to you.
you have described my symptoms aches and pains right to a T. I'm yrs old had a complete thyroidectomy 18 mths ago and been experiencing this since then. Actually I had some of this before but not to the extent and severity as now. Had Graves disese along with Hyperthyroidism with goiter and nodules. They did the radioactive iodine killed the thyroid but not the nodules. The nodules took over and I still had hyper as well as hypo symptoms. It was a nightmare. I am taking mcg of levothyroxine every day as well as calcium, D3 and Termeric. I am almost always in pain especially my feet, especially the left one. hips, legs, knees, wrists and hands just about my whole body. I am active swim 3 times a week ride a stationary bike 4 to 6 times a week for 10 miles each time. Used to walk 2 to 4 miles a day. I can no longer do this as my feet hurt so much it's unbearable. Been pretty depressed, been to a doctore and he wants me to go to therapy for my back?....I'm tired most of the time don't sleep well and never feel rested when I wake up. I attributed all of this to aging and arthritus. I'm told I don't have arthritus except maby in my lower back area. Have been active all my life. Have gained over 30lbs since surgery no matter how little I eat. have not eaten gluten in 6 yrs. do not eat processed foods or anything that isn't organic. I'm miserable and irratable as hell sometimes feeling that life is not liveable anymore. I'm not feeling sorry for myself but am tired of being in pain all the time. Have no idea what to do about it and feel that the docs aren't on board.
Hi Tonie, I sent you a PM. Hope it's helpful.
thank you so much Catherine. I've been so desperate to get back to my old energy levels and pain free. Have actually been reluctant to discuss this with my Doctors or anyone for fear of being told it was "all in my head", Had that experience once before and I almost bled to death when one of the Docs ( the 6th) took one look at me and ordered a a blood count. They immediately rushed my into emergency and gave me 7 pints of blood and then they stopped to let my body make the rest. Still bled and had to have an emergency hysterectomy. One of the doctors said it was allergies even though the test said no. So I'm a bit gun shy so to speak. I try not to take any perscription drugs and usually refuse them. So I guess I'm a difficult patient I will look into your suggestions starting today. Thanks again
The docs are mostly morons, taught what to think, not how to think. I was turned away when I went to the doc for appendicitis, broken foot, pretty much anything I've tried to get treatment for, the protocol is diagnose nothing, do a bunch of expensive and invasive tests, still diagnose nothing, send me to gyno, more tests, freak out about cysts on ovaries, diagnose nothing. Oh, by the way, my appendix burst and I had ten years of paritonitis, which caused the escalation of the thyroid disease, oh and of course, those ovarian cysts that kept alternating side? Oh yeah, that's what ovaries are supposed to do when they make eggs.
i recently stayed with my mom in hospital and rehab. I was on a knee scooter with a broken foot, In a month they didn't get a single day right of either her meals or her meds. Constantly gave her unnecessary meds, got the doses way too high, wouldn't stop without docs permission, tons of drugs for poo and pee... Completely ridiculous!
So,
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.
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!?
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.