light bulb moment...very long ramble

[webster2]

Now that my brain fog has cleared up a bit, I am re-thinking my journey of the last two years in which thyroid disease was not diagnosed as a probable cause of any of the strange symptoms (physical and emotional) and recurring bouts of pneumonia that I was experiencing. I find that so unbelievable since I had been hyperthyroid in the past.

I have had pneumonia 5 times in the last 2 years. Three of these times shingles was also diagnosed. After the pneumonia had passed.. the lingering pain on my scalp , where the shingles were alleged, was diagnosed as postherpetic neuralgia. Also, my scalp had these painful nasty lesions on it for years that would flare up at times. I now know that thyroid disease has complications of neuralgia. Since having surgery, my scalp has cleared up & is pain free!

My last bout of "pneumonia" was a misdiagnosed thyroid storm. When the medical folks finally decided that is what it might have been; the worst was certainly over, but I sure thought I was dying. I was fortunate to find this message board shortly after that.

I also had lesions on my legs that one doctor said that looks like thyroid....and nothing was pursued there either. I could have insisted that tests be run then, but at that time I didn't know, that as a patient we have to be proactive in our quest for good health and proper medical care (even when we don't feel well). I still was under the impression that the doctor knows best and will help me feel better. Now I know that we, as patients, need to be informed and proactive.

I am not sure how to go about getting thyroid testing moved up in the line of possible causes of people's symptoms but it sure needs to be done. Too many people suffer and are led to believe there's nothing wrong, or if the patient is a woman around the age of menopause, that 's the culprit.

I had surgery to remove the remaining half of my thyroid, and I can't begin to tell you how much better I feel, even in the hospital I could feel things improving, like my scalp and the lesions on my legs. Those unsightly little buggars are gone! My joints no longer ache. It is a pleasure to get up and move around instead of a pain filled experience. I am not even sure if my levo is at the correct dose yet, and I feel better. Thursday I will have the first blood test.


The point of my ramble...is, what? Gratitude! This board is wonderfully supportive, empowering, and full of great knowledge (ammo to use at the dr's office...just don't say online...support group is what I say). My wish that people suffering will get the attention they need. My appreciation for all of the help and support I have received to get to the place I am now. Thank you, everyone...and for those just beginning...hang in there!

[Octavia]

What a wonderful post, for so many reasons!

It is so unfortunate that so many people have to live this nightmare for so long before truly getting the right help. I completely agree with you...thyroid needs to be "moved up" in line. Honestly, it seems like thyroid problems are almost epidemic, and yet so ingnored at the same time. The incidence of thyroid problems honestly makes me wonder what we are doing differently in life that people didn't do before...it there something in our foods? In our water? In our air? ??? Who knows, at this point...

[Andros]

Now that my brain fog has cleared up a bit, I am re-thinking my journey of the last two years in which thyroid disease was not diagnosed as a probable cause of any of the strange symptoms (physical and emotional) and recurring bouts of pneumonia that I was experiencing. I find that so unbelievable since I had been hyperthyroid in the past.

I have had pneumonia 5 times in the last 2 years. Three of these times shingles was also diagnosed. After the pneumonia had passed.. the lingering pain on my scalp , where the shingles were alleged, was diagnosed as postherpetic neuralgia. Also, my scalp had these painful nasty lesions on it for years that would flare up at times. I now know that thyroid disease has complications of neuralgia. Since having surgery, my scalp has cleared up & is pain free!

My last bout of "pneumonia" was a misdiagnosed thyroid storm. When the medical folks finally decided that is what it might have been; the worst was certainly over, but I sure thought I was dying. I was fortunate to find this message board shortly after that.

I also had lesions on my legs that one doctor said that looks like thyroid....and nothing was pursued there either. I could have insisted that tests be run then, but at that time I didn't know, that as a patient we have to be proactive in our quest for good health and proper medical care (even when we don't feel well). I still was under the impression that the doctor knows best and will help me feel better. Now I know that we, as patients, need to be informed and proactive.

I am not sure how to go about getting thyroid testing moved up in the line of possible causes of people's symptoms but it sure needs to be done. Too many people suffer and are led to believe there's nothing wrong, or if the patient is a woman around the age of menopause, that 's the culprit.

I had surgery to remove the remaining half of my thyroid, and I can't begin to tell you how much better I feel, even in the hospital I could feel things improving, like my scalp and the lesions on my legs. Those unsightly little buggars are gone! My joints no longer ache. It is a pleasure to get up and move around instead of a pain filled experience. I am not even sure if my levo is at the correct dose yet, and I feel better. Thursday I will have the first blood test.


The point of my ramble...is, what? Gratitude! This board is wonderfully supportive, empowering, and full of great knowledge (ammo to use at the dr's office...just don't say online...support group is what I say). My wish that people suffering will get the attention they need. My appreciation for all of the help and support I have received to get to the place I am now. Thank you, everyone...and for those just beginning...hang in there!

What a wonderful suggestion about saying, "Support Group" instead of I read it on-line. Awesome!!!

Thank you for that and thank you for being who and what you are. In spite of your own problems, you have been a major contributor to the health and well being of the folks who post on this board.

And......................I also have a tip! "For those who are gluten-free, make sure your shampoo is gluten-free!" I had some serious sores on my scalp myself and attributed it to Lupus. This was an on-going problem for a few years. I always used Biolage Shampoo. Something prompted me to read the ingredients about 6 months ago. WHEAT!!! OMG!!! I change to a wheat-free shampoo and the sores are forever gone; believe that or not!!!

I still use the Biolage but I use the Peppermint Shampoo which does not have Wheat. LOL!!!

You reminded me when you mentioned the scalp sores.

http://i992.photobucket.com/albums/af50/dedeh_photos/Thank%20You/Thank_you_animated_gif.gif for this very encouraging post.

[webster2]

Thank you,

The incidence of thyroid problems honestly makes me wonder what we are doing differently in life that people didn't do before...it there something in our foods? In our water? In our air? ??? Who knows, at this point...

Scary isn't it? The amount of thyroid imbalances and cancer does seem like an epidemic. And, think of the ones not tested, or treated. There must be a link somewhere.

And......................I also have a tip! "For those who are gluten-free, make sure your shampoo is gluten-free!" I had some serious sores on my scalp myself and attributed it to Lupus. This was an on-going problem for a few years. I always used Biolage Shampoo. Something prompted me to read the ingredients about 6 months ago. WHEAT!!! OMG!!! I change to a wheat-free shampoo and the sores are forever gone; believe that or not!!!

I still use the Biolage but I use the Peppermint Shampoo which does not have Wheat. LOL!!!

You reminded me when you mentioned the scalp sores.


I just ran in and checked my shampoo, gluten free! Very good tip! I am convinced more and more everyday that gluten free will help. I feel very good. A gluten free diet has not been difficult at all to follow. I have not purchased foods specifically marketed as GF because of the price. Many foods have always been GF, it takes a little investigating. I am still looking for the Thai noodles.

Thank you all, I am very grateful to feel good again. Thank you for being my support group!

[Andros]

Thank you,

The incidence of thyroid problems honestly makes me wonder what we are doing differently in life that people didn't do before...it there something in our foods? In our water? In our air? ??? Who knows, at this point...

Scary isn't it? The amount of thyroid imbalances and cancer does seem like an epidemic. And, think of the ones not tested, or treated. There must be a link somewhere.

And......................I also have a tip! "For those who are gluten-free, make sure your shampoo is gluten-free!" I had some serious sores on my scalp myself and attributed it to Lupus. This was an on-going problem for a few years. I always used Biolage Shampoo. Something prompted me to read the ingredients about 6 months ago. WHEAT!!! OMG!!! I change to a wheat-free shampoo and the sores are forever gone; believe that or not!!!

I still use the Biolage but I use the Peppermint Shampoo which does not have Wheat. LOL!!!

You reminded me when you mentioned the scalp sores.


I just ran in and checked my shampoo, gluten free! Very good tip! I am convinced more and more everyday that gluten free will help. I feel very good. A gluten free diet has not been difficult at all to follow. I have not purchased foods specifically marketed as GF because of the price. Many foods have always been GF, it takes a little investigating. I am still looking for the Thai noodles.

Thank you all, I am very grateful to feel good again. Thank you for being my support group!

We eat simple and basic and also do not purchase gluten-free ready made foods. Price is a very strong consideration and also maintaining weight is uppermost. So..................simple, basic, pure and good foods!!!

We don't feel at all deprived.

So so glad you are feeling better.

[bigfoot]

Many thanks for your post, your help, and the assistance of everyone here on the boards!

As someone just starting out down this road, this "support group" has been instrumental in being able to advocate for myself and find a good doctor. In the past I shared the same mentality as you; "the doctor knows all". It's hard to question the doctors and take control of your health.

I can only hope that many other folks who are trying to figure out their own puzzle are able to discover these boards and the great folks here!

So glad you are feeling better!:anim_32: