Choking Feeling - Tightness in Neck

[ceedeekay]

After reading a few threads, this is something I've been suffering with since Oct 2001 and no doctor has been able to give me an answer.  This is the cliff notes version.

I've seen THREE endocrinologists (going on 4), an Immunologist, ENT (who pointed towards the thyroid more than once), Allergist, a dentist specializing in TMJ and even a chiropractor which felt like it was irritating my neck with adjustments.

It started with a choking feeling in my neck. I came home from work ripping off my turtle neck and having dry choking heaves. After that I couldn't wear anything around my neck including necklaces, turtlenecks, or my hair touching it.

About two months later, I was diagnosed with mono and was in bed from Jan 2002 to March 2002. During this time I gained 50lbs in those months going from 140 to 190lbs.

I saw an endocrinologist in April in Rochester NY who said I had "Fibromyalgia of the thyroid" and that there was nothing wrong with me.

I went to another endo. in Buffalo NY. She looked at my blood work and said "There is nothing wrong with you."  
I said: Why do I have this feeling in my neck?  
She said: Don't know.
-- and  sent me on my way

I had an ultrasound in 2002 that showed some nodules on the thyroid. No doctor addressed it.

I continued to have this feeling in my neck.  My shirts are all pulled out, I wear V necks, I put my hair up, I can't wear necklaces and I also cannot touch the front of my neck. It's hard to find a comfortable spot when sleeping because pressure below my jaw radiates.  I can't wear a scarf or a winter coat with a high collar because it rubs on the sides of my neck.

I began to live with this as annoying as it was.

Last year, I went to another endocrinologist regarding some other problem and stressed that I had this issue since Oct 2001.  She did another thyroid test and found my leves were off. Gave me synthroid.

She did an ultrasound and took a biopsy of the nodules. No cancer. Thyroid was a little enlarged.
I was told to live with the feeling in my neck.

I CAN'T DO THIS ANYMORE!!!!  Right now the neck is too tight, I have keep taking Advil which is not good to relieve this tightness. I feel like no doctor cares to help and that I'm the only person in the area with this problem.
It all started around the time I was experiencing symptoms of mono before I was diagnosed.

I see another endo in November. What else can I ask for to see if this problem can be solved (aside from having the thyroid removed).  I'm at my wit's end!

Thank you for any help!

[just_a_cna_and_nursing_student]

i dont think she was missing the symptom she was trying to help, that is what you wanted were ideas. I hope that you found or find an answer. anytime anything touches my throat i feel as if i'm choking, but i was also born with reflux, i also have what looks to be a goiter and a buffalo hump. I am only 24 and have had these issues for quite a few years now. so i understand the frustration of the dr. not paying attention thinking that it is something small.  

[MommyDiane]

Will do and thank you. I'm just waiting for an apt to be scheduled.  

[ScorpioLove]

I really wanna know if you finally found what was wrong because I have a lot of similar issues and sometimes I feel like I'm gonna have an anyrism.I think it's either nerve damage or Tarlov cysts on my spine filling with spinal fluid and pressing on my nerves and my skull and I don't wanna go through all the crazy tests just for them to tell me nothing is wrong when my pain level is at a10 most of the time..Please tell me you have found your miracle Dr or you are closer to the solution.

[ceedeekay]

In november 2014 I found out what I had for 13 years! It started with me having mono in Oct 2001.  

I went to a new ENT in November 2014 after I had a massage therapist tell me that my neck felt "weird" and there felt like there was a lump or growth on it under my chin.  

I went to him with all my tests and history and he knew exactly what I had just based on my symptoms. The first one in 13 years and I was seeing another ENT during this time who scoped my nose into my throat.  

He told me I had Lingual tonsillitis which was so inflamed that it was pushing out my hyoid bone.  The hyoid bone is very sensitive which is why I felt anything touching my neck would send me through the roof.  The choking feeling was partially from the tonsils being really inflamed and the hyoid bone protruding.

I had three weeks of antibiotics (augmentin), high doses of prednisone and prilosec as he saw some acid reflux.  After the medicine, the feeling in my neck went away. I cannot figure out why my initial ENT didn't see this - and he had the history of my symptoms since day 1.  

[gimel]

TSH is a pituitary hormone that is affected by so many things that at beset it is only an indicator, to be considered along with more importnat indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T3 and Free T4.  The main value for TSH is to distinguish between primary hypothyroidism (Hashimoto's Thyroiditis), and central hypothyroidism (hypothalamus/pituitary related).  I'd say that you have central hypothyroidism.  I say that based on your symptoms, and your minimal test result for Total T4 that is below the range.  

A Total T4 or T3 test represents the total amount of those in your blood.  Only a small portion of that total is free of protein molecules, thus called Free.  Only the small, Free portion, is biologically active.  So you should make sure they always test you for both Free T3 and Free T4 each time you go in for tests.  If the doctor resists, just insist on it and don't take no for an answer.  And I suggest that you should go in right away and get those done.  While you are there it would also be a good idea to test for Vitamin D, B12 and ferritin.  Hypo patients are frequently too low in the ranges for those as well.  

When you have new test results, please get a copy of the lab report and post results, along with reference ranges.  If your Free T4 and Free T3 are in the lower half of their ranges, that frequently results in hypo symptoms.  That is because the ranges are far too broad to be functional for many people.  

Keep in mind that a good thyroid doctor will treat a hypo patient clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important for you, not just test results.  When you see your doctor it would be a good idea to find out if he is going to be willing to treat clinically as described.  If not, then you will need to find a good thyroid doctor that will do so.

[MommyDiane]

im not much for going to doctors, no do I take a lot of meds, pain meds. And I never use narcs. I have one prescript and that is the BP meds my doctor put me on about a month ago.

[MommyDiane]

I can remember the TSH was 0.5-5.0 and mine was 1.7. I only remember the low range for the T4 and that was 95-??? And mine was 94. 1 point below normal.

[gimel]

Please post your T4 result, along with reference range shown on the lab report.