[hashigirl]

I was misdiagnosed as panic disorder and it almost killed cause I had Addison's Disease. I hope this doesn't happen to anyone else. Remember Molder, search for the truth.

 

[Andros]

I was misdiagnosed as panic disorder and it almost killed cause I had Addison's Disease. I hope this doesn't happen to anyone else. Remember Molder, search for the truth.

I am new here and just read this. Oh, my gosh!! That is a very very huge mistake!

How and when did you finally get diagnosed?

If you are checking in, please let us know how you are doing! This has to be complicated treating Hashimoto's and Addisons' at the same time.

Andros

 

[hashigirl]

The heart palpitations began at age 7 but I didn't tell anyone, i was just scared and would for them to go away. Then I was told at 18 they were panic attacks. But, it was my heart the darn time, it was beating too fast and I would get dizzy and faint if that sounds familiar to anyone. I got diagnosed with Hashi's in 2005, but...got even worse after being put on synthroid i became very very sick, i don't think i would even be alive if my adrenal problem (Addison's Disease) was figured out in time, my friend put in the car and took me to my doctor and said do something! And the next thing I new I was put on Fludrocortisone. To control my Tachycardia and Othrostatic Hypotension being caused by Adrenal Failure, that was seven months. No more abdominal pain, IBS, life is much better, my heart barely bothers me on the Addison's Medication, but I do have to a cardiologist. I hope this story helps, I believe what I have is called Schmitts Syndrome, Hashimoto's, Positive TSI's, and Addisons are Schmitts Syndrome, rare but out there. I am doing good, but there is a lot of maintenance involved with this, it's no fun, but I ain't gonna die either!

 

[chopper]

Just curious, as you were beginning to get a proper diagnosis, what were your thyroid labs like?

How about your cortisol?

Rather, what test did they do to confirm your diagnosis? ACTH?

I too have high TSI, high TPO, high TG, high Ferritin, high TSH but borderline low Ft4 and Ft3. I get heart palps all the time and also have a fairly high heart rate. I'm supposedly hypo and the docs want me on Synthroid but the last 3 times I tried taking it I felt REALLY jittery - like it sent me instantly hyper. I have a script now and have been putting off taking it for months now.

 

[Andros]

The heart palpitations began at age 7 but I didn't tell anyone, i was just scared and would for them to go away. Then I was told at 18 they were panic attacks. But, it was my heart the darn time, it was beating too fast and I would get dizzy and faint if that sounds familiar to anyone. I got diagnosed with Hashi's in 2005, but...got even worse after being put on synthroid i became very very sick, i don't think i would even be alive if my adrenal problem (Addison's Disease) was figured out in time, my friend put in the car and took me to my doctor and said do something! And the next thing I new I was put on Fludrocortisone. To control my Tachycardia and Othrostatic Hypotension being caused by Adrenal Failure, that was seven months. No more abdominal pain, IBS, life is much better, my heart barely bothers me on the Addison's Medication, but I do have to a cardiologist. I hope this story helps, I believe what I have is called Schmitts Syndrome, Hashimoto's, Positive TSI's, and Addisons are Schmitts Syndrome, rare but out there. I am doing good, but there is a lot of maintenance involved with this, it's no fun, but I ain't gonna die either!

Oh, Hashigirl!!! This had to be so scary prior to diagnosis and you have suffered nearly all your life. You can't have had much of a childhood, that is for sure. {{{{Hashigirl}}}}

I have heard of Schmitt's Syndrome; yes indeed. There is a lot of maintenance but on the plus side, those of us who have autoimmune challenges and "do" take care of ourselves have a tendency to live not only longer but have a better quality of life than those who do not. So there!! Ha, ha!! Something nice to look forward to.

Is it necessary for you to be on a beta-blocker or does the cortisone control that as well?

Andros

 

[Andros]

The heart palpitations began at age 7 but I didn't tell anyone, i was just scared and would for them to go away. Then I was told at 18 they were panic attacks. But, it was my heart the darn time, it was beating too fast and I would get dizzy and faint if that sounds familiar to anyone. I got diagnosed with Hashi's in 2005, but...got even worse after being put on synthroid i became very very sick, i don't think i would even be alive if my adrenal problem (Addison's Disease) was figured out in time, my friend put in the car and took me to my doctor and said do something! And the next thing I new I was put on Fludrocortisone. To control my Tachycardia and Othrostatic Hypotension being caused by Adrenal Failure, that was seven months. No more abdominal pain, IBS, life is much better, my heart barely bothers me on the Addison's Medication, but I do have to a cardiologist. I hope this story helps, I believe what I have is called Schmitts Syndrome, Hashimoto's, Positive TSI's, and Addisons are Schmitts Syndrome, rare but out there. I am doing good, but there is a lot of maintenance involved with this, it's no fun, but I ain't gonna die either!

How is the fibro? If you want to talk about it, I might have some "tips!"

Andros

 

[Andros]

Just curious, as you were beginning to get a proper diagnosis, what were your thyroid labs like?

How about your cortisol?

Rather, what test did they do to confirm your diagnosis? ACTH?

I too have high TSI, high TPO, high TG, high Ferritin, high TSH but borderline low Ft4 and Ft3. I get heart palps all the time and also have a fairly high heart rate. I'm supposedly hypo and the docs want me on Synthroid but the last 3 times I tried taking it I felt REALLY jittery - like it sent me instantly hyper. I have a script now and have been putting off taking it for months now.

I just read this. I am wondering............have you had an ulta-sound or an uptake scan? High Tg can be "suggestive" of thyroid cancer and as you know TSI is "definitive" for Hyperthyroid.

No wonder you get jittery if you take thyroxine replacement.

High TGab is found in cancer and hyperthyroidism. Here is some info on that.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

Also, the patient should have NO TSI and if the patient does, that is "definitive" for hyperthyoid.

What do the test results mean?
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that this abnormal antibody is responsible for causing the person's hyperthyroidism.

http://uimc.discoveryhospital.com/main.php?t=enc&id=1516

Now, this gets tricky as you can see but I do have to tell you that I have seen many situations such as yours and if you have not had the radioactive uptake scan, I urge you to do so. Sonograms are good to a certain degree but if the nodules are less than a certain size, the sonogram does not pick them up and also a "lot" depends on the skill of the person doing the sonogram whereas radioactive uptake is rather cut and dried.

Glad you meet you and I love your little and very homey forum.

Andros

 

[chopper]

I've had several sonos at this point but never the RAI uptake. Sonos come back "mildly enlarged, heterogeneous multi nodular goiter consistent with hashi's"

I've seen my sonos as they do it and the tech girl said last time "it's ugly" whereas the thyroid should look soft and fleshy, mine looked like the bumpy side of the moon with craters and divots everywhere. It was in fact an ugly thyroid on its way out.

Now to add to the mix, I'm a guy. My mother had partial thyroidectomy for Hashi's / nodules but the doc was premature to remove her gland in my opinion or maybe not but she never had a chance to progress with symptoms.

Ironically, just 3 weeks ago, my 50-something year old uncle (my mother's brother) just found out he had Graves.

Since I've been involved with these boards for many years, I knew many of the symptoms and told my mother about 4 years ago that her brother had Graves but no one listened to me. He in fact was "classic Graves" - high heart rate, BP, high thyroid levels, low TSH, etc. Im not so fortunate. I have a perfectly divided case it seems - hyper feelings many of the times with overweight, tired, hot, very sensitive to heat and sun, puffy and until very recently, my thyroid numbers were always near dead center of the range with high and wildly fluctuating TSH. Just very recently my FT4 dropped below the normal range - just barely. FT3 was still lower quadrant normal.

If you took a classic graves person and mixed him with a classic hypo person, you would have me.

 

[Andros]

I've had several sonos at this point but never the RAI uptake. Sonos come back "mildly enlarged, heterogeneous multi nodular goiter consistent with hashi's"

I've seen my sonos as they do it and the tech girl said last time "it's ugly" whereas the thyroid should look soft and fleshy, mine looked like the bumpy side of the moon with craters and divots everywhere. It was in fact an ugly thyroid on its way out.

Now to add to the mix, I'm a guy. My mother had partial thyroidectomy for Hashi's / nodules but the doc was premature to remove her gland in my opinion or maybe not but she never had a chance to progress with symptoms.

Ironically, just 3 weeks ago, my 50-something year old uncle (my mother's brother) just found out he had Graves.

Since I've been involved with these boards for many years, I knew many of the symptoms and told my mother about 4 years ago that her brother had Graves but no one listened to me. He in fact was "classic Graves" - high heart rate, BP, high thyroid levels, low TSH, etc. Im not so fortunate. I have a perfectly divided case it seems - hyper feelings many of the times with overweight, tired, hot, very sensitive to heat and sun, puffy and until very recently, my thyroid numbers were always near dead center of the range with high and wildly fluctuating TSH. Just very recently my FT4 dropped below the normal range - just barely. FT3 was still lower quadrant normal.

If you took a classic graves person and mixed him with a classic hypo person, you would have me.

And myself. I was the same for many many years and just ever so sick until finally I had a thyroid storm and almost kicked the bucket. Then I was diagnosed. But I was hypo for many many years. Had a goiter, had GED..........no one ever thought to run antibodies and my labs for thyroid panel always came back in range. As far as symptoms go at that time, I was also classically hypothyroid.

You have my empathy and I really mean that. I know. I lost the best years of my adult life over this.

Wonder why your ferritin is so high? Do you donate blood? Have you been diagnosed w/ hemochromatosis? How high is your ferritin? The range is higher for men, I believe.

There are some cases when a high ferritin is specific to a disease, such as in body iron overload (i.e.- hemochromatosis). In the case of cancer, a high ferritin is a nonspecific result of the cancer affects on the body and is not a cause of the cancer.

I "wish" you would get a radioactive uptake scan; I truly do. I am a worry wart.
Especially with the Thyroglobulin in the thousands! Eeeeeeeeks.
Andros

 

[chopper]

My Ferritin has been in the 390's on several tests but my TIBC comes back normal so they were not yet concerned about iron overload.

Also to note is my testosterone is very low - 190 - 204 for my age. The range is something like 240 - 900 and I should be around 600 for my age (39).

I don't quite understand your progression. You were hypo or hyper or both? You went hypo after RAI I assume but before that you were classic graves?

How do you feel now?

I should just take that damned Synthroid pill with some regularity and see if it solves my problems but Im so nervous cause of all the heart palps and hyper feelings all the time. It is said that you can have heart palps being classic hypo too.

 

[hashigirl]

Well, 3-4 years my am cortisol was taken and came back 6 (normal range 4-22). But that is low for in the morning cause you start out with the most cortisol when you wake up and drops continuously throughout the day. Then I had ACTH test, the test was drawn too late, and the results were botched and invalid. I continue to have cortisol and ACTH tests done until I was seen for my heart problems on emergency basis with a cardiologist and I was placed on Fludrocortisone immediately without testing cause the risk was too get to take the risk with my life by holding back the medication and waiting form confirmation with blood tests. Ulitimately, the medication changed my whole life, I had no idea that day i walked into cardio, my problems for years were going to be solved without tests, but yes, the medication is AWESOME!!! I never get dizzy anymore, no IBS issues, no breathing problems, no palpitations. My doctor was able to diagnose quickly because his sister had it and he said he was very familiar with the problem!!! I lucked out!!!! Now, I barely notice my thyroid, as a matter of fact. I have TPO's at 2,000/ml and TSI's and I don't take any thyroid meds, it's awesome, and I thank my lucky stars everyday i wake up!!

Just curious, as you were beginning to get a proper diagnosis, what were your thyroid labs like?

How about your cortisol?

Rather, what test did they do to confirm your diagnosis? ACTH?

I too have high TSI, high TPO, high TG, high Ferritin, high TSH but borderline low Ft4 and Ft3. I get heart palps all the time and also have a fairly high heart rate. I'm supposedly hypo and the docs want me on Synthroid but the last 3 times I tried taking it I felt REALLY jittery - like it sent me instantly hyper. I have a script now and have been putting off taking it for months now.

 

[chopper]

Can the RAI uptake show cancer? I thought it just showed the amount of "juice" flowing through my gland. Don't you need a biopsy for definitive cancer dx?

 

[hashigirl]

Did you know there is a blood test to detect thyroid cancer? I had it two years ago, my grandmother had thyroid cancer, your endo can run it on you if you ask. No need for a biopsy unless the blood test comes back bad. I can't remember the name, but I can look for it if you doctor isn't familiar with it.

 

[hashigirl]

Well. As far as the fibro goes, I just get neck pain, myofascial pain and migraines, I question my fibro diagnosis...I think if my hydcortisone for the Addison's was acurrately dealt with, I think my fibro my fibro symptoms might go away. I think Addison's has caused my more grief than anymore of my health conditions, including the thyroid. I can tell you the Anxiety pills didn't do anything for my heart palplitations alone, the only thing that worked was Florinef, awesome stuff if you need it, I definitely have Schmitt's and I think that it could do all this. I have even been misdiagnosed with LUPUS. I can tell you my kidneys and heart have been banged around alot due to lack of diagnosis in a timely manner. I have blood in my urine frequently but no infection. BUT I don't miss the torturous breathing problems in the middle of the night, i think that was coming from my kidney and heart or one of the them. My advice, never give up until you are HAPPY with your health and can function. I rode my doctors like a cheap suit to get this far. :.

How is the fibro? If you want to talk about it, I might have some "tips!"

Andros

 

[Andros]

Well. As far as the fibro goes, I just get neck pain, myofascial pain and migraines, I question my fibro diagnosis...I think if my hydcortisone for the Addison's was acurrately dealt with, I think my fibro my fibro symptoms might go away. I think Addison's has caused my more grief than anymore of my health conditions, including the thyroid. I can tell you the Anxiety pills didn't do anything for my heart palplitations alone, the only thing that worked was Florinef, awesome stuff if you need it, I definitely have Schmitt's and I think that it could do all this. I have even been misdiagnosed with LUPUS. I can tell you my kidneys and heart have been banged around alot due to lack of diagnosis in a timely manner. I have blood in my urine frequently but no infection. BUT I don't miss the torturous breathing problems in the middle of the night, i think that was coming from my kidney and heart or one of the them. My advice, never give up until you are HAPPY with your health and can function. I rode my doctors like a cheap suit to get this far. :.

You sure have been through hell and back!!

Definitive lab tests for Lupus are Anti-DNA, C3, C4. If you have ANA or even if you don't have it that does not mean you do or don't have Lupus. ANA is "suggestive" of a myriad of autoimmune diseases.

Here is what I have found. Most of us with autoimmune diseases can no longer tolerate (process) things (substances) like others w/o autoimmune diseases.

That would include glutens, artificial sweeteners, MSG and a whole bunch of other chemicals commonly found in processed foods. Also "pesticides" are big on the hit list.

At one time, I was in agony from "supposed" fibro and I began eliminating these things from my diet and surroundings. I am totally pain-free 99% of the time given the fact that I am 67 and one would have to expect some pains from time to time.

So, if you have not done so, you may wish to consider the above.

How have you been feeling right now? Pretty good, I hope?
Andros

 

[hashigirl]

Certainly does seem like a i have food allergies, you are correct about that. As far as the Lupus goes, I did have a positive Anti-DNA test that was flagged High. Interesting my PCP seems to think I have Lupus, but the Rhuemy thinks it just Fibro. Also, I do test positive for the Lupus Anticoagulant, any thoughts on that? I had A TIA a few months ago, wondering if the Lupus Anticoagulant might have had anything to do with that? Feeling ok.

 

[Andros]

Certainly does seem like a i have food allergies, you are correct about that. As far as the Lupus goes, I did have a positive Anti-DNA test that was flagged High. Interesting my PCP seems to think I have Lupus, but the Rhuemy thinks it just Fibro. Also, I do test positive for the Lupus Anticoagulant, any thoughts on that? I had A TIA a few months ago, wondering if the Lupus Anticoagulant might have had anything to do with that? Feeling ok.

Oh, my goodness. Anti-DNA is most suspicious of Lupus and you may wish to discuss this further with your doctor.

Re the Lupus Anticoagulant; if you are not having any problems such as phlebitis or miscarriages, no treatment is necessary but you should be closely monitered for blood clots. And perhaps the TIA was caused by that; oh dear!

Do you think you should be on a blood thinner?

Andros

 

[hashigirl]

Serious, you think i got it? It would make more sense than fibro, cause my neck hurts bad and my head always hurt and my kidneys are always getting pounced around, and I HAVE had swollen lymph nodes in my arm pits, pluerisy, heart inflammation, a couple of TIA's, a few heart attacks, i have died and been brought back...the list goes on
Anymore thoughts, should i get a different Rhuemy maybe? He doesn't seem very concerned about the postive DNA-antibody test? or the Lupus Anticoagulant. And I keep blaming the TIA's on it.:rolleyes:

Oh, my goodness. Anti-DNA is most defintely "definitive" for Lupus. You do have Lupus.

Re the Lupus Anticoagulant; if you are not having any problems such as phlebitis or miscarriages, no treatment is necessary but you should be closely monitered for blood clots. And perhaps the TIA was caused by that; oh dear!

Do you think you should be on a blood thinner?

Andros

 

[hashigirl]

My PCP wanted me Coumadin a few months and then nothing about and nobody ever did anything. Do you just forget about a TIA and assume you won't have a stroke in the future?

Oh, my goodness. Anti-DNA is most defintely "definitive" for Lupus. You do have Lupus.

Re the Lupus Anticoagulant; if you are not having any problems such as phlebitis or miscarriages, no treatment is necessary but you should be closely monitered for blood clots. And perhaps the TIA was caused by that; oh dear!

Do you think you should be on a blood thinner?

Andros

 

[Andros]

Serious, you think i got it? It would make more sense than fibro, cause my neck hurts bad and my head always hurt and my kidneys are always getting pounced around, and I HAVE had swollen lymph nodes in my arm pits, pluerisy, heart inflammation, a couple of TIA's, a few heart attacks, i have died and been brought back...the list goes on
Anymore thoughts, should i get a different Rhuemy maybe? He doesn't seem very concerned about the postive DNA-antibody test? or the Lupus Anticoagulant. And I keep blaming the TIA's on it.:rolleyes:

Oh, definitely yes. You have it. And I must say that my Rheumatologist/immunologist would jump right on this. She is the one that suspected I had Lupus and ran the Anti-DNA, C3 and C4. All of it was through the roof.

Now things are very very quiet due to diet and life-style improvements. Just had the tests run in June and the antibodies for Lupus were barely detectible.

So, I do agree............you need a rheumatologist who is on this. Your other doctor has nailed it.

And if you want, I can help you with diet changes and "stuff." The only med I take is my Armour. And yes, the pain could be from the Lupus. It most likely is. Also, I have to get kidney labs every three months and you should also as Lupus is insidiously hard on the kidneys.

I have had the pleurisy so many times, costalchondritis and a whole myriad of painful symptoms prior to my Lupus diagnosis. Huge swollen lymphs in the neck, arm pits and groin area. Of course the lymph system is so vast and you feel the pain but you cannot see the swollen lymph.

{{{{Hashigirl}}}}; I sure know what you are going through.

Andros