[watsonsh]

Hi guys,

I wanted to pass along some first hand learning (my own) and some thoughts or connections that I have made.

Please know that this post applies to my situation and in no way am I suggesting that anyone's situation is similar nor should they do what I did.

But it is interesting...why because many of us TOSers also have a thryoid problem...many of us have Hashimotos.

In a previous post Johanna pointed out that thyroid is well known to cause nerve problems specifically carpal tunnel.

Well I often thought that my thyroid problem was connected to my TOS and possibly aggravated it. Now looking back I can trace my thyroid problem back 10 years. And I remember a convo with Dr saxton where she told me about a man with TOS and a goiter where the goiter eventually merged with the muscles in his neck and made his TOS worse and not treatable by surgery.

And in all my PT sessions Joyce always thought the goiter (from a space occupying sense in my neck) and the inflammation from the hashi's contributed to my TOS and posture problems. Minimally the goiter put pressure on the muscles there but its the inflammation from the thyroid antibodies attacking that area that I think made my brahcial plexus vulnerable and inflammed.

I had a goiter or enlarged thyroid. And I had Hashimotos. Hashi's slowly destroys the thyroid over the course of many years making the person eventually hypothyroid. And Hashi's is really a thyroiditis...itis meaning inflammation in the thyroid area. And any inflammation in that area near the neck and brachial plexus is inflammation no TOSer needs. We have enough to contend with.

Additoinally I always felt worse in the long run on the thyroid meds. I tried them several times and each time the first couple of weeks I would feel better and then progressively worse until each time I became hyper and had to stop. Other people seemed the tolerate them and the docs had no idea why I could not.

The last time this happened was in July. I got so hyper from the meds that I went to the ER multiple times.

And on the thyroids meds my symptoms got even worse....muscle weakness (shoulder and pelvis) , nerve problems. IBS, twitching, tremors and boy were my emotions whacked...crying anxiety and just total emotional overload. The twitching and tremors made me think I was dying at some points. Plus the heart tachycardia at random times. also the malabsorption issues from the IBS and how my thyroid was affecting my glucose and insulin and sex hormones etc.

Oh and the excess thyroid stressed my adrenal glands too. Your hormones are like a three legged stool...thyroid, adrenal and sex hormones. If one if off the stool is off balance. And if your thyroid or specifically thyroxine levels are too high....it makes your adrenals work harder, exhausting them eventually.

Why did the meds make me hyper and why could they not control the thryoid with meds? Well my gland was not uniformly destroyed. One part was 90% gone the other less than 70% gone which meant that the meds helped the more hypo part but made the functioning side more hyper. So add thryoid meds on top of a partial functioning thryoid that is being destroyed and releasing its own thryoid hormones unevenly as it was destroyed making me feel like crap and making me worse. It was not controllable by meds.

And the goiter was 3x its normal size and choking me and making the TOS worse. Another intersting thing about the area around my thyroid was all the TOS docs were puzzled why all the muscles in that area became fibrotic and rock hard. Dr Filler even noted the unusual fibrotic muscles in his injection reports. I have also found a connection to the thryroid that can have the effect of tissue fibrosis, mainly fibrosis to the thryoid but its all in the same area.

But all the endocrinologists were like no no no no we never take out a hashi's thyroid. But in my heart I knew the thyroid was bad and tried several docs and two surgeons. And finally someone took it out.

And after 8 weeks the difference is amazing and getting better. My muscles are coming back slowly but better. And my mood ...wow i am so much more even...anxiety is down and the paranoia and the tears are down. I even find myself happy.

So what have I learned. Its called thyrotoxicosis or hashi's toxicosis and thyro -myopathy. Read some of the things the doc gave me that made such sense.

And the doc said that thyrotoxicosis is hard to diagnose because most people have normal blood tests and they then attibute it to other things like Fibro (not in anyway saying that fibro is not real but interestingly can mimic this and vice versa). Of course its hard to dx. Its transitory as your thyroid destroys the follicles and releases too much thyroxine. Hard to line that up with a random blood test on any given day. So the docs think you are normal and the thyroid meds are working. And for some yes it might. But its too much of a connection that TOSers have HAshi's. And oh yeah the thyroid is innervated by the C7/C8 nerves....so when they are compromised the thyroid does not work as well and then its a vicious circle of downwar spiral. Coincidence nope.

This thyrotoxicosis or hashi's toxicosis is like little mini attacks on your muscles and nerves and has to atleast contribute to making TOS worse. And given how long it takes for Hashis to destroy the thryoid (like 10 years) we cannot catch a break. Years and years of silently affecting your muscles and nerves.

So take a read. In no way am I advocating that anyone have their thyroid taken out but the connections for me struck a chord...

Many of the articles reference hyperthyroidism. I was not hyperthyroid naturally nor did I have Graves...no the meds that were supposed to help me put too much thyroxine in my system and aggravated everything. My blood tests rarely showed hyper thyroid unless I was on the drugs for a while. For the most part my blood tests showed normal...yet I got worse and more hyper. Nope docs said I just had simple Hashi's. And some said fibro too. And all it took was small doses of thryoid meds to make me worse.

So I chalked it up to TOS and tried like hell to do PT and be gentle but strengthen my muscles...but they would not comply and I think based on below I know why for me.


Thyrotoxic myopathy is a neuromuscular disorder that occurs due to overproduction of thyroid hormone and is characterized by excessive fatigability, muscle wasting and weakness. It mainly affects muscles of the shoulder, hips and hands. The adverse effects of thyroid hormone on the structure and function of muscles gives rise to this myopathy. Although diagnosis can be tricky, this disorder is reversible with appropriate treatment.

In hyperthyroidism, there is an accelerated production of ATP and reuptake of calcium. This leads to very rapid contraction and relaxation. When this occurs repetitively, the structure and mechanics of the slow fiber is changed to that of a fast fiber. Hyperthyroidism increases the body's basal metabolic rate and much of this energy is inefficiently used for muscle contraction. In turn, the muscles lose their endurance, fatigue easily, and become weak and wasted.Hyperthyroidism can occur due to several causes. Of these, only two are commonly associated with myopathy. One of them is multinodular goiter, when the thyroid gland becomes studded with nodules, enlarges and overproduces thyroxine. The other is Graves disease, where the body launches an autoimmune attack on the thyroid gland and causes it to produce excess thyroxine.
A hyperthyroid person who has muscle weakness may or may not have other recognizable manifestations of hyperthyroidism. Myopathy can sometimes be the first presentation of the underlying hyperthyroid state. There are several types depending on the rapidity of symptom development and patterns of muscle involvement.

CHRONIC THYROTOXIC MYOPATHY The symptom onset is very insidious, so much so that patients very often do not notice the wasting or weakness. An average of six months elapses before the diagnosis is made, as the symptoms are subtle and the progress is very gradual. As mentioned earlier, only around 30% of patients complain of neuromuscular symptoms whereas around 80% show muscle weakness on testing. Patients complain of low exercise tolerance, easy fatigability, difficulty in doing certain tasks, muscle stiffness, muscle twitching and sometimes muscle wasting. Shoulder, hand and then pelvic muscles are affected and tasks like climbing stairs, getting up from a low chair or lifting arms above the shoulders become strenuous. Due to the weakness, movements become clumsy and effortful. The degree of wasting varies among individuals. It is usually mild to moderate but on occasions can be so severe that the scapulae look "winged." Despite a remarkable degree of wasting and weakness, patients remain ambulatory. If the myopathy progresses untreated, then facial muscles, swallowing, and respiratory muscles are involved with resultant difficulty swallowing and breathing. Muscles that control eye movement can also be affected, leading to double vision and squint.


Here is another link where in the end it says it affects the muscles of the shoulders and pelvis

http://books.google.com/books?id=JYF...PF8Jlhr1lVXlcE


Here is another one

A clinician may, however, wrongly believe that a patient who is "thyrotoxic" has fibromyalgia. The word "thyrotoxic" refers to tissue overstimulation by excess thyroid hormone. Hyperthyroid patients usually have thyrotoxic muscles. (So do hypothyroid patients who are overstimulated by taking too much thyroid hormone medication.) Weakness is the main symptom of thyrotoxic muscles, and some patients also have muscle pain. It is the patient with both muscle weakness and pain that the clinician may mistakenly diagnose as having fibromyalgia. Pain is the hallmark of fibromyalgia, and most patients also have chronic fatigue. A misdiagnosis is likely if the thyrotoxic patient describes her muscle weakness as fatigue rather than weakness. The clinician may mistakenly consider this evidence of fibromyalgia. The muscle weakness of the thyrotoxic patient, however, is easily distinguished from the general fatigue and low motor drive of the fibromyalgia patient. The fibromyalgia patient’s muscles are usually not weak in relation to her level of physical conditioning. Clinicians, including rheumatologists, must be careful to make this distinction or risk making a misdiagnosis of fibromyalgia.

Another one...


Thyrotoxic myopathy is a neuromuscular disorder that may accompany hyperthyroidism (Graves' disease, caused by overproduction of the thyroid hormone thyroxine). Symptoms may include muscle weakness, wasting of the pelvic girdle and shoulder muscles, fatigue, and heat intolerance. Muscle breakdown may occur in acute cases. Physical acts such as climbing stairs may be difficult. Patients may develop muscle damage to the eyes and eyelids, which may affect mobility of the eye muscles, and temporary, but severe, attacks of muscle weakness known as periodic paralysis.
Is there any treatment?
Treatment is based on treatment for hyperthyroidism and may include prescription of iodine and other drugs, beta-blockers, and surgery. Myopathy may improve by restoring normal thyroid function. Complete or partial removal of the thyroid may be required in severe cases.

Anyway do with this what you all want. I just thought I would pass it along.

Funny....thyroid gone...twitching gone, tremors gone, off beta blockers and heart issues down significantly. Muscles getting better slowly and nerve issues better and range of motion better. I still have a way to go because the damage was done but I feel I atleast made a good choice for me.

Plus with that goiter gone I have so much more room in that ole neck.

Maybe not a cure but it has made my TOS more maneagble. But I truly think there was a connection between the thyroid and the muscle problems and the resulting cascade of problems.

Seriously how are we TOSers supposed to improve if our muscles and nerves are being attacked by our own bodies autoimmune problems. If the thyroid compromises our muscle strength particularly in our shoulders how can we get better...the TOS can only get worse if our muscles continue to be compromised. But this thyrotoxicosis is silent and insidious. But its there and I see the connection. Mine was just more severe plus the goiter made it easier for me to get thyroid surgery.

And remember that you need to stay diligent in watching your blood results while on the thyroid meds. I educated myself about what each meant.

And know that if after a while on the meds you feel worse its possibly a clue of thyromyopathy.

And last dont forget the connection between the thyroid, the meds and calcium. Too much thryoid meds on top of your own disfunctioning thyroid that is still producing thyroxine will call calcium reabsorption and eventually osteoporosis....great first muscles can't hold us up and then the bones. We can't win.

I still have bad days and pain but I am a bit more optimistic based on my surgery. They say it takes a year for the muscles to recover from too much thyroxine but I can tell teh difference despite the pain.

[Jomar]

Awesome info!
thanks for posting it for us

glad you are feeling better too

[johannakat]

and you think i am so smart...
nice find!!!

[Stardust]

thanks for this. I'm "multinodular" and have been borderline hyperthyroid for years (results always fall just inside the "normal" range). I've always wondered if there was any connection between my thyroid situation and the TOS....I've read a number of articles, but these are particularly informative.

[tshadow]

I was diagnosed Hashi's about 6 years prior to the TOS diagnosis.

I am too sick to read your whole post right now, so I am going to print it out and really study it. This is a valuable post.

Thank you so much Shelley and God bless you and your recovery.

Are we going to meet you at Johanna's?

[watsonsh]

I will totally be at Kit Kat's for the meeting. Looking forward to seeing everyone again.

And thanks everyone I wanted to post the above not because I think the thryoid is causing the TOS but because it certainly was contributing to my muscle weakness and ability to get better.

And to Stardust...what I found intersting is that one of the articles said that thyrotoxic myopathy (muscle weakenss from too much thryoxine) was hard to diagnose and often people tested normal. I sure did but it certainly has been a contributing factor.