I feel like someone is choking me

I did not have any symptoms of thyroid cancer until AFTER my FNB. I have almost all the symptoms of thyroid imbalance but my blood work has always been normal so no doctor has ever treated me. Over the past year the extreme fatigue has destroyed my life. I've been told the symptoms aren't related to the cancer but I'm hopeful they will improve. I am counting down the 20 days I have to wait for surgery but the new problems are driving me insane.

I now have a mild sore throat that doesn't clear, a rougher voice, a burning sensation at times, and a constant pressure around my throat that makes me feel like someone is choking me. I also have a stabbing pain in my right shoulder blade (have also had it in my left), have incredible neck tension, and daily headaches. I now wake up every few hours because I am so uncomfortable. Is this common?

I've already called to try to bump up my appointment but no luck.

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Hi,

I'm not sure where you live, but I highly suggest you go see Dr. Ridha Arem in Houston. He is considered the best thyroid specialist in the world. He is also Oprah's endo, but my family has been in his care far before that claim to fame.

I just had a right lobectomy Friday after getting a second opinion from him. My ENT surgeon in Las Vegas (where I live) said I needed a total thyroidectomy after two FNA biopsies came back the same with a right side follicular neoplasm and a left atypia of undetermined significance.

For how you feel, my Mom spent a decade feeling terrible. Her levels are slightly hypo, but no matter which doctor she saw, she still never felt right. She finally went to Dr. Arem in 2006 and has felt perfect since. His office makes their own bioidentical thyroid hormone compound to fit you. He also doesn't pay as much attention to your levels as much as how you feel.

He doesn't take insurance. My visit, with consult, blood work and ultrasound, all done in his office, was $1,200. If you do have an issue, he will take care of you. I saw him at 8am on a wednesday, and after we both agreed to the lobectomy, he had me meeting the Chief of Surgery for Houston Methodist Hospital by 2pm the same day. I was in surgery Friday, and had my pathology report Monday. All the while, Dr. Arem was in contact with my surgeon, who called the pathologist personally.

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Deb13 - It may well be that you will feel better after surgery. After healing up a bit, I felt much better. I also had the bad shoulder pain and neck tension, insomnia, as well as other problems, like swallowing problems and anxiety. The surgery added to the neck/shoulder pain, but a few professional shoulder massages worked wonders. I also had normal blood work, even though surgery revealed severe Hashimoto's along with two tumors, one quite large. After surgery, the problems went *poof* - it was like a miracle. I hope you will feel better, too!

Best of luck with your surgery, and I hope you will keep us posted.

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Ah, thanks for the words of encouragement, it is exactly what I need. It is my biggest fear that this is only going to add to my long list of problems instead of help to resolve them. I've been trying for about three years to find a doctor to treat me based on symptoms and not blood tests. I guess the cancer took care of that.

I am angry though that previous doctors never once touched my neck. The final straw was when I was told to take depression medication because of all of my complaints. I went to a new facility and found a wonderful doctor. Groping around my neck was the first thing she did at my initial visit. I didn't think much of it at the time but she may have found the answer.

Do you know how they find hashimotos through surgery?

My fatigue has been so severe over the past eight months that I live to work and I barely make it through the day. After work I make dinner and sit for the rest of the night often falling asleep by 7:30pm. It's quite depressing and hard on my family. Weekends generally include a two to three hour nap in which I never feel rested- the pain and tiredness just continue. Prior to this mystery I was up at five and on the go til bedtime. I never sat down.

I think the next twenty days will be the roughest part, just waiting around to get my life back. I may have to correct myself after the surgery but that pain will be temporary. I was also diagnosed with microscopic colitis in 2007 and have been trying to manage that which includes a very restricted diet due numerous food sensitivities. I don't remember what good health feels like so let the count down begin!

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Thank for the recommendations. I'm in Wisconsin so that won't work for me. He sounds like a gem of a doctor- wish there was one like that around here. I am, for once, happy with my team of doctors- maybe because they've been the first not to dismiss me as a hypochondriac.

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Deb, I think we live a parallel life. When reading your post I had to look back to make sure it wasn't me who posted and I just forgot. I still don't know why they use blood work as an indicator if it doesn't show up, for so many people,that there IS a problem. I also had FNA which came back suspicious but they chose to do nothing for 7 yrs. I now, because of the choking feeling, have had a TT and on the road of finding the right dosage of levothyroxine. Hang in there. For me, I think you need to stay informed of your situation and take charge of your treatments. You tell them what you need. If it doesn't feel right it probably isn't. You will of course need a good Endo doctor. Don't settle for just anybody. I've been through some pretty scary setbacks because of neglagiance. God has been so good to me. Even though I was mis diagnosed for 7-10 yrs it was perfect timing to find out I have cancer. I recommend a pamphlet to everyone. It has helped me beyond words to have peace. " Don't waste your cancer" by John Piper. May god be with you ....

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Deb,

I'm surprised someone has told you those symptoms are not from the tumor. They are all ones I've seen listed on websites discussing thyca, especially the voice change and choking sensation. As for me, I didn't realize I had nodule that made it hard to breathe while laying down until I had the surgery and noticed I could suddenly sleep with a pillow under my head again. I had shooting pains on the top of my shoulder that went away after I healed from the surgery.

I had undiagnosed Hashimoto's that was discovered after TT. Prior blood work was always normal, and no doctor checked for antibodies. I had suspected something was not right with my thyroid for years, but I didn't know to ask them to check for antibodies. During TT, they discovered my thyroid was really badly inflamed and stuck to my trachea. It made it very hard to remove, so the surgery took twice as long as planned. Pathology came back stating I had longstanding thyroiditis and the blood tests my endo ordered showed high antibodies.

I feel so much better post TT; I hope you will too.

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Deb--I am in Vegas but made the trip to Houston to get situated with Dr. Arem. Well worth it. Best money I ever spent.

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Deb, sympathy to you for all of what you are going through!

In my experience, Hashimoto's can cause hypothyroid symptoms even when thyroid hormone levels are normal. And such autoimmune diseases can cause fatigue from inflammation, beyond the thyroid impacts. Hashimoto's is detected by a blood test measuring anti-thyroglobulin antibodies (TgAb) and/or thyroid peroxidase antibodies (TPO Ab). The doctor's exam and surgical pathology can also observe the effects on the tissue. Thyroid cancer and Hashimoto's often co-occur, and the great news is that surgery for the cancer often resolves both problems over time.

If you might have Hashimoto's antibodies, I would highly recommend getting that blood test now, before your surgery. This is not only so that you'll know, but because the antibodies influence the long-term cancer followup, and having a pre-op level to compare against later is key.

All the best to you in your waiting, surgery and recovery!

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I agree that is would be a good idea to get antibodies checked before surgery. I wish I had done so.

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You know Deb13, I've been discussing the issue of food allergies with someone else on the THYCA site and during the year since my surgery, I have also found that any food allergies I had or didn't have, suddenly came out in full force!!! I would have something in the evening after supper whether it be ice cream or just fruit and WHAM!! sound asleep within minutes!! I made sandwiches using mayonnaise for years...suddenly my mouth was filling with thick saliva - found soy was a major ingredient! I have since stopped using mayo or any soy product (including vitamin D3 which was in a soy base!!!) and substitute avocados and I am not kidding - I feel 100% better. Also trying to keep gluten products away, and regular milk products. I think with thyroids gone, our bodies change, however, my dentist said my teeth were strong and healthy and had almost no plaque - first time I ever got that response!! So maybe try changing your diet around and subsituting avocados - they are great, and also great for your skin!!!

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Hi Deb13,

New here. I too have had extreme fatigue + muscle fatigue/pain, joint pain for over a year. In trying to find out the cause, it was discovered that I was subclinical hypo, had high TPO antibodies, high ANA, and had a nodule on my left thyroid via U/S. My FNA was suspicious for cancer so I had a PT on 8/13/2013--just found out a couple of days ago it was a papillary carcenoma, fully encapsulated, clear lymph nodes. The rest of my thyroid showed evidence of acute inflammation consistent with Hash's. I'm now scheduled for completion surgery on 10/1/13 and with have RAI afterwards.

I didn't realize I had any throat issues until after the PT as my voice is actually stronger, I'm also sleeping better. We'll see if the sore throats go away--so far so good.

My surgeon and endo also don't believe my thyroid issues are causing my fatigue--but my endo did say he's had a few people with similar severe symptoms with thyroid CA that improved "mysteriously" after treatment. Maybe it's getting rid of the inflamed thyroid that did it??? Sure hope it works for me, there is nothing I want more that to get my energy and strength back.

Best of luck to you!

Cathy

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Aikoann, I've had a rough road with doctors that had a god complex and weren't willing to listen to what I had to say about my body. I've finally found a good team and am hopeful the cooperative relationship will continue. I've never dealt with managing thyroid meds so I'm not sure what to expect and am trying to get educated. I learned a hard lesson with a series of GI's that sometimes they just aren't familiar certain conditions and their word can't always be taken as law. I found a support group, learned a ton about food sensitivities, and listened to my own body. I literally almost died by listening to the doctors' advise. I also believe that my compromised immune system lead to my thyroid problems but it doesn't pay to dwell on what I can't change. I agree wholeheartedly with you- we have to take control of our own health.

Utahgirl1970, food sensitivities are right up my alley- unfortunately. It's easier for me to tell you what I can eat vs what I can't. I eat primarily meat, vegetables, limited fruits, and nuts. I avoid all gluten, soy, dairy, and eggs based on testing I did through Enterolab in Texas. It has really helped. I would urge anyone facing food issues and GI problems to browse The Potty People website, there is a wealth of information there. I also believe I have mast cell and histamine issues. I avoid night shades and legumes whenever possible. I am still trying to get control over my microscopic colitis issues and was very frustrated to have another health problem to deal with.

Thank you to everyone else that posted..... Reading your stories have made me feel like I can get a grip on this and hopefully move to better health. I returned my pre-op questionnaire this afternoon and made the request o be tested for hashimotos.
19 more days!

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Great Deb13 - Get rested and try not to stress too much. I know it's hard!

My surgeon did test for antibodies during pre-op, then pathology confirmed "chronic thyroditis."

Boy, I feel like I've lived parallel lives with so many of you!

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Please read this.. http://www.mythyroid.com/psychologicalimpact.html

I used to experience panic attacks because I thought my airway was closing or because I felt my neck was too tight or sore etc. I would always think the cancer was back or spreading. These things happened even after having a scan and being cleared of no recurrence years ago. I was always having these neck aches until I read that article. I got so sick of doctors telling me it was anxiety when I just knew it had to be cancer! So now even with the recurrence I just faced I had little to no symptoms. I didn't even realize there was a tiny lump in my neck. My doctor caught it.

Specifically, pay attention to this part of the article:

"A common scenario preceding the initial diagnosis is for the usual patient to be in reasonably good health, not feel sick, and simply have a small thyroid nodule that usually does not cause any symptoms....

.... It is not unusual for patients to start to notice various sore throats, twinges, aches, tingling, numbness and pains, that previously may have gone unrecognized. Most of us have these inexplicable minor twinges, spasms, aches or body sensations all the time,; they are fleeting and they don't usually bother us. However, once a diagnosis of cancer has been made, patients may become nervous and more easily frightened when sore throats, tightness in the neck, choking sensations, or occasional tingling is noticed. Furthermore, during a severe throat, viral, bacterial or dental infections, lymph nodes may appear (a normal reaction to the infection) in the neck that be frightening for the patient with a history of thyroid cancer. The neck, voice, or throat area is frequently the source of unusual sensations in patients with anxiety."

So once you realize that anxiety starts in the neck area and you start to take control of it, it becomes apparent what's happening. I'm not saying there may not be other things going on since I am not your doctor. But this has helped me so much. After years of having neck spasms and freaking out, I am much more relaxed now and I wish I had read this years ago when I was first diagnosed! HTH!

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Also chances are that if you didn't have any symptoms before being diagnosed, then what you are feeling are not symptoms of that diagnosis, but anxiety as described above in the article/study I posted. I hope it brings you sound mind and strength!

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very good article, however, I started having laryngeal spasms only after my surgery, which totally shut down my ability to breathe in - AT ALL!!! Never had them before, they always come when I am so NOT stressed, they come out of nowhere, and I have 3 choices: get myself very, very calm so the spasm passes then I sound like I'm having a severe asthma attack as the air begins to flow again, but after 15 minutes I'm fine - a little sore and swollen in the neck, but able to work or continue what I was doing, 2. I can pass out which would relieve the spasm, or 3. which I will not go into at this time.....I stay away from vinegars of any kind, soy products, however it happened in the shower once, when water went up my nose!!!!

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might the colitis issues be associated with being hypo or hyper because I am constantly, and I mean constantly in the bathroom...

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RunningwithScissors - thanks for the article, good to keep in mind! I only want to add that for me the FNA/biopsy was quite rough. It swelled up inside my throat and landed me in the ER begging for oxygen, which of course was made much worse by panic! I did need a few Xanax to get through those days. Choking and not being able to breathe is the worst.

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Im posting this quote on various discussions because I think it is very appropriate for us and it gave me strength:
"This is what courage means: to keep fighting even in the darkness even when all but a sliver of hope is lost. An enemy can take your treasure, your land, even your life, but one thing he cannot take: your choice to fight back."

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Utahgirl1970, I can't speak for all GI diseases but I have microscopic colitis. There are two types: collagenous and lymphocytic. Mine is collagenous, and for us, we are seven times more prone to have thyroid issues. That is why I didn't give up the fight in trying to get treated. I've had diarrhea since 2007 and ave been trying to get it under control since my dx. The doctors know very little about it but I found a support group and learned how I could manage my diet in order to help. That forum has been a lifesaver. What the doctors told me is wrong so I don't bother arguing with them anymore. I still take corticosteroids to help with flares. I was able to recently stop them for about a month but I relapsed. It is a possibility that my thyroid is the reason I am unable to discontinue the meds. Being tied to the bathroom is life altering and not in a good way.

I have high hopes for the TT but am constantly thinking of how I may be let down.

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