Question for everyone

daisy76

Regular Member

Joined : Nov 2011

Posts : 218

Posted 11/12/2011 5:35 AM (GMT -7)

Hi Everyone,

Thank you in advance for any reply's. I'm new to this forum and had a question. I wondered how many, if any of you, were diagnosed with any form of thyroid disorder through any other means besides bloodwork??

Right now, my Doctor has me on a trial period of a medication used for fibromyalgia to see how I respond.

I have almost every symptom of hypothyroid but have had it tested numerous times and it always comes back negative. Since many symptoms of hypothyroid also are symtoms of other endocrine problems, my Dr sent me to an endocrinologist. All test on my adrenal glands etc came back normal.

Alot of these symtoms are also fibromyalgia symtoms and since there's no definitive test for fibro, it's usually diagnosed when everything else is ruled out. So that's where I'm at now.

But I still get this nagging feeling that somehow they're wrong, I've had it for years. I really feel like it's my thyroid. I'm trying to educate myself as best I can as I've been dismissed by so many Dr's when it comes to any kind of diagnosis other than to suggest that it's due to depression since all of my bloodwork comes back normal.

The reason I ask is that I ran accross a few thing's that made me second guess the Dr's. The first just my own research and finding sites such as this where countless people said that it went undetected in them for years.

Some people said that it was only dx after a saliva test. I've asked 2 Dr's I've seen about this and they said they don't do them.

Then I found this video online where these two Dr's said that Dr's should be going by the patients symptoms and not just numbers and how so it's being missed in so many people because Dr's only look at bloodwork ranges.

I also knew a women who had it but she told me that to this day it will not show up on bloodwork, it was only after an eye Dr diagnosed her that she began taking synthroid which she resonded well to and has been on for years.

I'm so frustrated and have been suffering from alot of these symptoms for over 10 years and they've only continued to get worse so that I am barely able to function. I am exhausted 24/7.

I just want to get to the bottom of what's really wrong with me and get on medication to treat it and then get back to living.

Thank you again for any info. or for sharing some of your personal stories with me. I greatly appreciate any feedback!

mscrowbar

Veteran Member

Joined : Nov 2010

Posts : 877

Posted 11/15/2011 1:59 PM (GMT -7)

I have had several unexplained symptoms in the past several years and am still trying to find out the whats and whys.

It all started with sleep issues and a constant sore throat/sinus/ear ache.

This is the easiest way without so much wording:

1)went to docs due to total exhaustion - diagnosed with low b-12. get shots every month, suggested to see a rheumy

2)diagnosed with fibro by rheumy.

3)still not feeling well - new blood work says low iron, doc says due to b-12 deficiency. several docs argued over this. I do not have pernicious anemia due to low b-12, I have iron deficiency, and low b-12.

4)still not well - suggested I see ENT and neurologist. neuro found nothing. ENT found large thyroid with nodules. nodules tested and found to be benign but had to have thyroid out regardless due to size. Testing after removal found cancer. Had therapy.

5)so hopefull that getting thyroid out would end sore throat/ear ache but it did not. still not feeling well. getting stiff and always very dry. Now I am on meds for fibro, synthroid, b-12, iron, and vitamin D (which was also very low). It is suggested that I go back to ENT but I still have not.

6)Rheumy, during exam and looking at recent blood work, now says that I have RA. This would help explain the stiffness, lack of sleep, the dryness, and several other things but still I wonder what could be next? He also added plaquenil and prednisone to my already bulging pill list. I have been on the plaquenil for over 4 months now and the stiffness and aches in my joints seems to be worse not better.

Now I wonder? was it all along RA, do I still have fibro, will I always have issues with malabsortion of b-12, iron, and vit.D? Will there be others?

Each symptom/diagnosis feels like a bump in the road and there is still many miles to travel. Where, and when, is this trip finally going to end?

Denita
**************************************
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

daisy76

Regular Member

Joined : Nov 2011

Posts : 218

Posted 11/15/2011 4:41 PM (GMT -7)

Hi Denita,

Thank you so much for replying. I completely understand how frustrating it can be to constantly not feel well and to feel like you're always searching for answers. At times I've almost just given up and resigned myself to just living with whatever this is due to sheer exhaustion and frustration.

It's especially frustrating as in your case, to have Dr's give so many conflicting answers.

I just recently joined the fibro forum and read a topic not too long ago that came to mind when you mentioned some of your symptoms. It was about sjogrens' syndrome (hope i'm spelling that right) It's often misdiagnosed as fibro because the symptoms can be very similar. You mentioned dryness. Is that in your eyes/mouth? That is one of the telling symptoms. Just something that might be worth looking into. I'll check later to see if I can find the article again and post the link for you.

Again, thank you for your response. Was at the Dr today and he did test's to check for a B12 deficiancy as well as Vitamin D as apparently that is common with fibro. I hope that you can find out what is causing you to have a sore throat and not to feel well. Maybe that link will be helpful. I hope. Will post it a bit later. Take care!!

daisy76

Regular Member

Joined : Nov 2011

Posts : 218

Posted 11/15/2011 4:44 PM (GMT -7)

Hi again,

After I posted that I noticed that you've already been dx with sjogrens'.

Is it possible that being dry could be the cause of your sore throat? I know when I get dry due to allergies I get a sore throat too.

mscrowbar

Veteran Member

Joined : Nov 2010

Posts : 877

Posted 11/16/2011 8:02 AM (GMT -7)

I'm not really sure. I cannot get any one doctor to answer that question or to recognize the symptoms for what they are and put the diagnosis to it.

I have been asking any one that would listen if all my "sinus/allergy" type symptoms could be from the sjogrens and none will say "yes" it could be. I just don't think there is enough info on it and very few have it that no one recognizes it for what it is.

I have extremely dry eyes, nose, throat and "other" region. My teeth have all started going bad at an alarming rate, I have had infections and sores in my mouth and my sore throats/ear aches never progress to full blown colds. I sit on this side of "I think I am coming down with something", something that never comes.

I use eye drops and sip drinks all day but I still continue to have that sore throat/ear ache. I am sure it is the sjogrens but what else is there to do for it? I see my rheumy on the 28th. I am going to go over this new diagnosis with him and all my symptoms and see if we can determine what is the fibro, what is the RA and what is the Sjogrens.

Denita
**************************************
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

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