# Severe Edema and other symptoms



## TickledPinkTwice

Hi guys. I have been Hypothyroid for over a decade. Last year, they finally diagnosed me with Hashimotos. Currently, they are testing me for Adrenal and/or Pituitary problems(waiting to hear back from the doctor). I have had some strange symptoms as of late and believe me when I said I have had a whole range of symptoms the last 10 years (as most of you know). 
Of course, I am exhausted I sleep 9 hours at night and take two naps a day, which is not easy with 3 year old twins and a full time job. I have the hair thinning,extremem sensitivity to heat and cold....What has been the most bothersome is the headaches,dizziness, numbness, tingling and severe Edema in my hands and feet. A few weeks ago I was rushed to the ER for Syncope while at work. My blood pressure is extremely low but my ankles and hands are soooooo swollen (like when I was pregnant)and I'm a smaller woman. My hands and feet go numb and tingle like they are falling asleep. 
This is making it very hard to even function at home or while at work. Has anyone experiend any of this? I know this doesn't necessarily belong in this category but being that I do have Hashimotos maybe someone else has experienced this. Thank you!

ETA-The lastest labs show low TSH, low Free T4 AND low T3. Again, I am waiting on the results regarding my MRI, Aldosterone and Cortisol.


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## Octavia

I really wish I had some insights to share, but I just don't.

Are your kidneys working properly? Heart?

I truly hope you get to the bottom of it soon.


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## Andros

TickledPinkTwice said:


> Hi guys. I have been Hypothyroid for over a decade. Last year, they finally diagnosed me with Hashimotos. Currently, they are testing me for Adrenal and/or Pituitary problems(waiting to hear back from the doctor). I have had some strange symptoms as of late and believe me when I said I have had a whole range of symptoms the last 10 years (as most of you know).
> Of course, I am exhausted I sleep 9 hours at night and take two naps a day, which is not easy with 3 year old twins and a full time job. I have the hair thinning,extremem sensitivity to heat and cold....What has been the most bothersome is the headaches,dizziness, numbness, tingling and severe Edema in my hands and feet. A few weeks ago I was rushed to the ER for Syncope while at work. My blood pressure is extremely low but my ankles and hands are soooooo swollen (like when I was pregnant)and I'm a smaller woman. My hands and feet go numb and tingle like they are falling asleep.
> This is making it very hard to even function at home or while at work. Has anyone experiend any of this? I know this doesn't necessarily belong in this category but being that I do have Hashimotos maybe someone else has experienced this. Thank you!
> 
> ETA-The lastest labs show low TSH, low Free T4 AND low T3. Again, I am waiting on the results regarding my MRI, Aldosterone and Cortisol.


Sure would like to see those lab results for the TSH, FT3 and FT4 with the ranges.

Sounds to me like you may have mxyedema and would benefit perhaps from some T3.

And how is your glucose?


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## TickledPinkTwice

Octavia said:


> I really wish I had some insights to share, but I just don't.
> 
> Are your kidneys working properly? Heart?
> 
> I truly hope you get to the bottom of it soon.


Thank you. I am seeing a cardiologist, they are wanting me to have a 30 day cardiac event monitor placed. My first thought was Kidney's too. I'm so frustrated. I am so young and I can't seem to keep up with all of my problems.


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## TickledPinkTwice

Andros said:


> Sure would like to see those lab results for the TSH, FT3 and FT4 with the ranges.
> 
> Sounds to me like you may have mxyedema and would benefit perhaps from some T3.
> 
> And how is your glucose?


I hope you don't mind I copy and pasted.

Most Recent
TSH .07 range .4-4.5
FT4 .90 range .8-1.8 within normal but very low
T3 83 range 80-180 within normal but very low
*How are all three low?*

A few older lab results for comparison
all reference ranges are the same from this lab.
2/26/11
FT4-2.1 ranges .8-1.8
TSH-4.87 ranges .4-4.5
*Both are high*

8/21/10
FT4-1.3
TSH-1.44

6/4/2010
FT4- .9
TSH- 9.88

4/1/2010
FT4- .8
TSH- 41.69

10/7/2009
FT4- 1.1
TSH- 8.66

The only time I have had my Glucose tested was during my ER visit, I had eaten and the nurse said it was fine at 107.


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## TickledPinkTwice

Oh and they did an X-ray and no blood clots. My BP runs low, however my pulse gets high sometimes.


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## Andros

TickledPinkTwice said:


> Thank you. I am seeing a cardiologist, they are wanting me to have a 30 day cardiac event monitor placed. My first thought was Kidney's too. I'm so frustrated. I am so young and I can't seem to keep up with all of my problems.


9.4 PATHOLOGY OF HYPOTHYROIDISM
The characteristic pathologic finding in hypothyroidism is a peculiar mucinous nonpitting edema (myxedema), which is most obvious in the dermis but can be present in many organs. The myxedema is due to accumulation of hyaluronic acid and other glycosaminoglycans in interstitial tissue; these hydrophilic molecules attract much water (1). The deposits of glycosaminoglycans have been related to loss of the inhibitory effects of thyroid hormone on the synthesis of hyaluronate, fibronectin and collagen by fibroblasts (2,3).

Continue reading here:
http://www.thyroidmanager.org/chapter/adult-hypothyroidism/


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## TickledPinkTwice

Andros said:


> 9.4 PATHOLOGY OF HYPOTHYROIDISM
> The characteristic pathologic finding in hypothyroidism is a peculiar mucinous nonpitting edema (myxedema), which is most obvious in the dermis but can be present in many organs. The myxedema is due to accumulation of hyaluronic acid and other glycosaminoglycans in interstitial tissue; these hydrophilic molecules attract much water (1). The deposits of glycosaminoglycans have been related to loss of the inhibitory effects of thyroid hormone on the synthesis of hyaluronate, fibronectin and collagen by fibroblasts (2,3).
> 
> Continue reading here:
> http://www.thyroidmanager.org/chapter/adult-hypothyroidism/


Thank you, I will read on as I have not had pitting in the skin.


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## TickledPinkTwice

I hope that my Thyroid is not too far gone. At one point my TSH was 144 (.3-3.0)


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## TickledPinkTwice

I also have a spot on my right leg. It isn't a rash but it looks like a rash because it itches SO bad. What I mean is that it was itchy and I got bumps from scratching. My skin is very thick there now too.It is about 6 inches by 4 inches big. I try not to scratch it but it is unbelievable itchy. Again the doctors don't know what it would be from, had it for months and it isn't related to food, fabric softener....etc
Can I post pics here? This is actually very similar to what it looks like....
http://www.dermnet.com/dn2/allJPG3/pretibial-myxedema-12.jpg


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## sjmjuly

I have hashi's and my outside ankle bones get a pocket of fluid on them every afternoon. The rest of my feet are completely normal. It's just this little pocket of fluid around the bone. Somedays are worse than others, and the right is worse than the left. It's very frustrating.
I am trying to drink more water in hopes it will help. I also have a doctor's appt next week. I hear swollen parts of the body are common with thyroid disease.


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## Andros

TickledPinkTwice said:


> I also have a spot on my right leg. It isn't a rash but it looks like a rash because it itches SO bad. What I mean is that it was itchy and I got bumps from scratching. My skin is very thick there now too.It is about 6 inches by 4 inches big. I try not to scratch it but it is unbelievable itchy. Again the doctors don't know what it would be from, had it for months and it isn't related to food, fabric softener....etc
> Can I post pics here? This is actually very similar to what it looks like....
> http://www.dermnet.com/dn2/allJPG3/pretibial-myxedema-12.jpg


I do believe you have myxedema. The skin does thicken. Tch!! I hate this for you!

Myxedema is a condition marked by thickening and swelling of the skin caused by insufficient production of thyroid hormones by the thyroid gland.
http://www.localhealth.com/article/myxedema


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## TickledPinkTwice

sjmjuly said:


> I have hashi's and my outside ankle bones get a pocket of fluid on them every afternoon. The rest of my feet are completely normal. It's just this little pocket of fluid around the bone. Somedays are worse than others, and the right is worse than the left. It's very frustrating.
> I am trying to drink more water in hopes it will help. I also have a doctor's appt next week. I hear swollen parts of the body are common with thyroid disease.


Do let me know what you find out please. I think my biggest concern is the sudden start of some serious odd issues.


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## TickledPinkTwice

Andros said:


> I do believe you have myxedema. The skin does thicken. Tch!! I hate this for you!
> 
> Myxedema is a condition marked by thickening and swelling of the skin caused by insufficient production of thyroid hormones by the thyroid gland.
> http://www.localhealth.com/article/myxedema


The rash certainly looks like it and the symptoms match. I am definitely going to be mentioning this to the doctor. Thanks so much:hugs:


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## CA-Lynn

Do you lead a sedentary lifestyle? Spend a lot of time at the computer? If so, that might be the culprit.


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## Octavia

I've been thinking about this off and on since Andros suggested myxedema yesterday. I'm not exceedingly familiar with myxedema, but I did some reading on it, and I do believe Andros may be onto something.

So...let's assume, for the sake of argument, that it could be myxedema. I got the impression from the stuff I read that myxedema is a pretty serious condition that needs to be addressed right away to avoid myxedema coma, which has a very high mortality rate (30% to 50%, depending what you read), but generally has another underlying condition that brings it on.

My point is that if it is or could be myxedema, you need to talk to a doctor pretty much immediately, or maybe even go to the ER????

Andros, what additional thoughts do you have about this? I'm concerned...this woman is 27 years old, has been hypo for 10+ years...her labs are a bit confusing...etc.


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## TickledPinkTwice

CA-Lynn said:


> Do you lead a sedentary lifestyle? Spend a lot of time at the computer? If so, that might be the culprit.


You see that is the thing, I am always tired but I work out 5-6 times per week. I have a desk job but I take a walk every hour and I have been doing this for three years.


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## TickledPinkTwice

Octavia said:


> I've been thinking about this off and on since Andros suggested myxedema yesterday. I'm not exceedingly familiar with myxedema, but I did some reading on it, and I do believe Andros may be onto something.
> 
> So...let's assume, for the sake of argument, that it could be myxedema. I got the impression from the stuff I read that myxedema is a pretty serious condition that needs to be addressed right away to avoid myxedema coma, which has a very high mortality rate (30% to 50%, depending what you read), but generally has another underlying condition that brings it on.
> 
> My point is that if it is or could be myxedema, you need to talk to a doctor pretty much immediately, or maybe even go to the ER????
> 
> Andros, what additional thoughts do you have about this? I'm concerned...this woman is 27 years old, has been hypo for 10+ years...her labs are a bit confusing...etc.


I have been doing more research too and the symptoms certainly match but a lot the doctor will argue is just typical Hypo symptoms. The edema is what has been cause for alarm, I can deal with the rest, I have for years. If the doctor ever returns my call I am going to mention it, he even said it himself I seem to be worst case scenario. You guys are right, what if my Colon Surgery, my passing out, the swelling.... are all related. The whole picture needs to be looked at instead of just passing me on to another specialist. I really do appreciate all the help you have given mehugs1


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## Octavia

TickledPinkTwice said:


> ...I can deal with the rest, I have for years.


That's exactly it...if you have been dealing with hypo symptoms for YEARS, despite the replacement thyroid hormone, then it points even more strongly to the possibility of myxedema.

I think you need to do more than just "mention" it - seems to me it could be pretty serious.

How many different thyroid replacement meds have you tried?


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## TickledPinkTwice

Octavia said:


> That's exactly it...if you have been dealing with hypo symptoms for YEARS, despite the replacement thyroid hormone, then it points even more strongly to the possibility of myxedema.
> 
> I think you need to do more than just "mention" it - seems to me it could be pretty serious.
> 
> How many different thyroid replacement meds have you tried?


I just wish the doctor would respond. At my appointment, he was great but now they won't respond. I have only been on Synthroid or generic, they keep changing my dosage I have been as high as 200 and as low as 50, alternating....etc I am currently on 112 until my next labs.

If he doesn't respond I am going to contact the Mayo Clinic. It is so overwhelming because my medical history is so long, I have had so many problems, surgeries...etc Im not sure where to begin and what is important and pertinent and what isn't


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## Andros

Octavia said:


> I've been thinking about this off and on since Andros suggested myxedema yesterday. I'm not exceedingly familiar with myxedema, but I did some reading on it, and I do believe Andros may be onto something.
> 
> So...let's assume, for the sake of argument, that it could be myxedema. I got the impression from the stuff I read that myxedema is a pretty serious condition that needs to be addressed right away to avoid myxedema coma, which has a very high mortality rate (30% to 50%, depending what you read), but generally has another underlying condition that brings it on.
> 
> My point is that if it is or could be myxedema, you need to talk to a doctor pretty much immediately, or maybe even go to the ER????
> 
> Andros, what additional thoughts do you have about this? I'm concerned...this woman is 27 years old, has been hypo for 10+ years...her labs are a bit confusing...etc.


Thank you Octavia and right you are. This can be a life-threatening situation and needs to be addressed by a medical professional.

Here is further info.

http://www.medicinenet.com/myxedema_coma/article.htm

Myxedema coma is an extreme complication of hypothyroidism in which patients exhibit multiple organ abnormalities and progressive mental deterioration. The term myxedema is often used interchangeably with hypothyroidism and myxedema coma. Myxedema also refers to the swelling of the skin and soft tissue that occurs in patients who are hypothyroid. Myxedema coma occurs when the body's compensatory responses to hypothyroidism are overwhelmed by a precipitating factor such as infection.

Please finishing reading here...................
http://www.aafp.org/afp/2000/1201/p2485.html


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## TickledPinkTwice

Andros said:


> Thank you Octavia and right you are. This can be a life-threatening situation and needs to be addressed by a medical professional.
> 
> Here is further info.
> 
> http://www.medicinenet.com/myxedema_coma/article.htm
> 
> Myxedema coma is an extreme complication of hypothyroidism in which patients exhibit multiple organ abnormalities and progressive mental deterioration. The term myxedema is often used interchangeably with hypothyroidism and myxedema coma. Myxedema also refers to the swelling of the skin and soft tissue that occurs in patients who are hypothyroid. Myxedema coma occurs when the body's compensatory responses to hypothyroidism are overwhelmed by a precipitating factor such as infection.
> 
> Please finishing reading here...................
> http://www.aafp.org/afp/2000/1201/p2485.html


Speaking from experience, I doubt the doctor will even conside it as an option since I am not elderly and it isn't winter:/ My temperature is low as low as the 95's but not ever low enough for Hypothermia and normally high 96's is what they find out the doctors office. I completely understand there are exceptions to the norm, I just think it will be hard to get him on the same page to even see this as a possibility.


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## Octavia

TickledPinkTwice said:


> Speaking from experience, I doubt the doctor will even conside it as an option since I am not elderly and it isn't winter:/ My temperature is low as low as the 95's but not ever low enough for Hypothermia and normally high 96's is what they find out the doctors office. I completely understand there are exceptions to the norm, I just think it will be hard to get him on the same page to even see this as a possibility.


But you ARE female, and you HAVE been hypothyroid for 10+ years. AND you have so many symptoms. Would it be so wrong to consider the possibility? If it's not myxedema, then great...but if it _even remotely could be_, then aren't we better safe than sorry? It's rare, so maybe he hasn't seen it before, but it sounds like he has admitted that you are a puzzling case.

Bottom line is this doctor has not been able to get you healthier with the standard approaches, and in fact you are getting less healthy. Your labs are all over the place, and sometimes they don't make intuitive sense (T3, T4, and TSH all low, for instance). It's time to think outside the box and consider additional possibilities before you continue to get worse.

Do you have someone who can go see the doctor with you and advocate for you, as I wouldn't be surprised if you just don't have the energy to push too hard for yourself?

(And you mentioned a question earlier...what if your colon surgery was the result of hypothyroidism? I thought the very same thing when I read a few days ago that you had that surgery. Honestly, I was shocked about it, but I didn't want to get into that not knowing your full history. I would say it's entirely possible, though, that being hypo did bring on the colonic intertia.)


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## TickledPinkTwice

Octavia said:


> But you ARE female, and you HAVE been hypothyroid for 10+ years. AND you have so many symptoms. Would it be so wrong to consider the possibility? If it's not myxedema, then great...but if it _even remotely could be_, then aren't we better safe than sorry? It's rare, so maybe he hasn't seen it before, but it sounds like he has admitted that you are a puzzling case.
> 
> Bottom line is this doctor has not been able to get you healthier with the standard approaches, and in fact you are getting less healthy. Your labs are all over the place, and sometimes they don't make intuitive sense (T3, T4, and TSH all low, for instance). It's time to think outside the box and consider additional possibilities before you continue to get worse.
> 
> Do you have someone who can go see the doctor with you and advocate for you, as I wouldn't be surprised if you just don't have the energy to push too hard for yourself?
> 
> (And you mentioned a question earlier...what if your colon surgery was the result of hypothyroidism? I thought the very same thing when I read a few days ago that you had that surgery. Honestly, I was shocked about it, but I didn't want to get into that not knowing your full history. I would say it's entirely possible, though, that being hypo did bring on the colonic intertia.)


In person I am very aggressive and assertive and my questions get answered,but I have been back in forth with them so long I am just tired of dealing with it,especially over the phone. You are very correct he did say that I was a complicated patient, he should at least consider it. I will say I won't give up until I have answer. And my test results are making no sense and I keep getting worse. I refuse to live this way. I will find a doctor who will listen and help. I can't wait until it is too late because as you both said, it can be fatal. I have too much to live for for all the business and politics with the doctor and insurance company.


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## jenny v

I agree with Octavia and Andros. If it's even the possibility of myxedema, you need to have it addressed fairly quickly. Could you possibly print out a copy of the article or maybe find some medical articles online about myxedema you could take with you to the doctor?


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## TickledPinkTwice

jenny v said:


> I agree with Octavia and Andros. If it's even the possibility of myxedema, you need to have it addressed fairly quickly. Could you possibly print out a copy of the article or maybe find some medical articles online about myxedema you could take with you to the doctor?


I think that is the best option, I have to make sure it is legitimate, not wikipedia. If it is rare, it may automatically be written off. It won't hurt to try!


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## Fissy

Hi! Do you know if your edema is caused by blood or fluid pooling? Your edema combined with your gastroparesis, low BP and syncope sound a little bit like dysautonomia symptoms. I just thought I'd bring it up in case you and your doctor run out of ideas. My doctors thought I was going through myxedema crisis/severe hypothyroidism but I didn't improve after thyroxine treatment so we had to look at different things and I ended up being diagnosed with this after spending months in and out of the hospital.
Good luck and I hope you can find some answers soon!


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## Octavia

TickledPinkTwice said:


> If it is rare, it may automatically be written off.


And if you were dealing with somethng common, it would have been solved by now. (Just trying to give you some talking points.)


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## TickledPinkTwice

Fissy said:


> Hi! Do you know if your edema is caused by blood or fluid pooling? Your edema combined with your gastroparesis, low BP and syncope sound a little bit like dysautonomia symptoms. I just thought I'd bring it up in case you and your doctor run out of ideas. My doctors thought I was going through myxedema crisis/severe hypothyroidism but I didn't improve after thyroxine treatment so we had to look at different things and I ended up being diagnosed with this after spending months in and out of the hospital.
> Good luck and I hope you can find some answers soon!


Hello! My assumption is fluid but I am not sure, what exactly is that?


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## TickledPinkTwice

Octavia said:


> And if you were dealing with somethng common, it would have been solved by now. (Just trying to give you some talking points.)


Isn't that the truth!
I talked to the doctor on the phone and he seems very flustered:/ He is going to look more into the abnormal results of the MRI,the intesnse contrasted area. He is still suspecting adrenal insufficieny but doesn't want to start the Hydrocortisone quite yet. He said we will retest in a month (already been on this dose for two weeks)to see where my FT4 is and if I am still symptomatic he will try to treat the AI. He admitted I am not the typical case. He doesn't believe my edema has to do with anything hormonal or if it is is just a result of the low Thyroid but he isn't ruling anything out. So right now we are working on getting my T4 up and then going from there.


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## Andros

TickledPinkTwice said:


> I think that is the best option, I have to make sure it is legitimate, not wikipedia. If it is rare, it may automatically be written off. It won't hurt to try!


It can't get more legit than this. Doctors refer to this all the time.
http://www.thyroidmanager.org/chapter/adult-hypothyroidism/#toc-myxedematous-cachexia

scroll down to 9.9 also (myxedema coma)


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## TickledPinkTwice

Thank you very much, I added that to my favorites and will print it out for my next appointment!


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## Andros

TickledPinkTwice said:


> Thank you very much, I added that to my favorites and will print it out for my next appointment!


We are lucky to have free access to such a professional and credible site. You are very very welcome!


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## TickledPinkTwice

That is very true! Tomorrow is my 6 weeks lab, it will be interesting to see what they show as I'm still so exhausted and my hair is still falling out:/


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## Andros

TickledPinkTwice said:


> That is very true! Tomorrow is my 6 weeks lab, it will be interesting to see what they show as I'm still so exhausted and my hair is still falling out:/


Please let us know the outcome of your doctor's visit. You know we all are concerned about your medical status right now.


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## TickledPinkTwice

Andros said:


> Please let us know the outcome of your doctor's visit. You know we all are concerned about your medical status right now.


It was only labs: TSH, FT4 and FT3 again. Depending on those results(I hope I get them soon) will depend if he wants to run more tests, add on Hydrocortisone or change my dose again. Still completely exhausted, it just never ends. I can't even function anymore:sad0049:


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## Octavia

TickledPinkTwice said:


> It was only labs: TSH, FT4 and FT3 again. Depending on those results(I hope I get them soon) will depend if he wants to run more tests, add on Hydrocortisone or change my dose again. Still completely exhausted, it just never ends. I can't even function anymore:sad0049:


Those labs should be ready by now...can you call and check? :hugs:


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## TickledPinkTwice

You two are just fantastic!hugs1 I did call and am waiting for a response. They are horrible at responding fast but then again I call so much they probably recognize my voice.lol


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## TickledPinkTwice

Got the results, after 6 weeks of 112MCG
TSH .011 .3-3.0
FT4 1.3 .8-1.8
T3 114 80-180

last results
TSH .07 range .4-4.5
FT4 .90 range .8-1.8
T3 83 range 80-180


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## TickledPinkTwice

We are staying on 112MCG at least until my appointment on the 5th. I'm still completely exhausted despite my decent FT4. Seems like,even though the FT4 is good my pituitary isn't doing crap because my TSH is way low still. Again, I know that isn't the important lab but when you suspect a secondary adrenal insufficiency I would say it has meaning. Thoughts?Then we will discuss AI and whether we need to do Hydrocortisone.


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## TickledPinkTwice

Soooooooo tired, still cold, still losing hair and still craving actual salt so bad!


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## Andros

TickledPinkTwice said:


> Soooooooo tired, still cold, still losing hair and still craving actual salt so bad!


What is this, please? ( AI-might start Hydrocortisone) I am not good at acronyms.

Not happy to hear you have yet to achieve a diagnosis for all of this.

So not happy!


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## TickledPinkTwice

Andros said:


> What is this, please? ( AI-might start Hydrocortisone) I am not good at acronyms.
> 
> Not happy to hear you have yet to achieve a diagnosis for all of this.
> 
> So not happy!


Secondary Adrenal Insufficiency, just like all of my results my ACTH test didn't really make sense. He suspects the Adrenal Insufficiency but can not say for sure so he said we check my levels and when I go in for my appointment if I still feel bad (surprise I do, I haven't felt good in years) despite good levels we may start on the Corticosteroid.
Just so frustrated my Gastroparesis has had me so sick the last few weeks and have a Gastroenterology appointment coming up. All I do is visit the doctors. I want to go to the Mayo Clinic but I don't know where to begin and quite frankly am overwhelmed!


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## Andros

TickledPinkTwice said:


> Secondary Adrenal Insufficiency, just like all of my results my ACTH test didn't really make sense. He suspects the Adrenal Insufficiency but can not say for sure so he said we check my levels and when I go in for my appointment if I still feel bad (surprise I do, I haven't felt good in years) despite good levels we may start on the Corticosteroid.
> Just so frustrated my Gastroparesis has had me so sick the last few weeks and have a Gastroenterology appointment coming up. All I do is visit the doctors. I want to go to the Mayo Clinic but I don't know where to begin and quite frankly am overwhelmed!


I know you feel overwhelmed and I don't blame you one bit. It's pretty bad when the sick person has to research to diagnose their own illness. And then convince the doctor on top of it.

Did you say you do not have diabetes? Gastroparesis is often found in persons w/diabetes.


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## Octavia

Tickled... another member here is going to Mayo soon: http://www.thyroidboards.com/showthread.php?t=6315&highlight=mayo

Perhaps you two could PM each other so you can find out the ins and outs of getting an appointment. I think it's a great idea.


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## TickledPinkTwice

Andros said:


> I know you feel overwhelmed and I don't blame you one bit. It's pretty bad when the sick person has to research to diagnose their own illness. And then convince the doctor on top of it.
> 
> Did you say you do not have diabetes? Gastroparesis is often found in persons w/diabetes.


I never thought of that but you are completely correct! Maybe that is why I am researching going to med school.lol I am frustrated, years and years of this. I do not have diabetes, my blood sugar is quite good actually. All of my issues are always diagnosed as Idiopathic, which is another reason I think everything is tied together!


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## TickledPinkTwice

Octavia said:


> Tickled... another member here is going to Mayo soon: http://www.thyroidboards.com/showthread.php?t=6315&highlight=mayo
> 
> Perhaps you two could PM each other so you can find out the ins and outs of getting an appointment. I think it's a great idea.


Thank you, I will!


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## TickledPinkTwice

I sent a request to have the Mayo Clinic contact me and I sent a PM<3


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## Octavia

TickledPinkTwice said:


> I sent a request to have the Mayo Clinic contact me and I sent a PM<3


Excellent!!!!


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## TickledPinkTwice

I am certain I left out symptoms.lol


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## Octavia

TickledPinkTwice said:


> I am certain I left out symptoms.lol


What? You have symptoms????


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## TickledPinkTwice

Octavia said:


> What? You have symptoms????


You don't say?:tongue0013:
A whole list full!


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## TickledPinkTwice

Oh My Goodness!!! I found this!
The symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person's quality of life. Each patient with dysautonomia is different-some are affected only mildly, while others are left completely bed-ridden and disabled.

The primary symptoms present in patients with dysautonomia are:

Excessive fatigue-YES
Excessive thirst (polydipsia)-SOMETIMES 
Lightheadedness, dizziness or vertigo -YES
Feelings of anxiety or panic (not mentally induced[citation needed])-YES 
Rapid heart rate or slow heart rate-RAPID 
Orthostatic hypotension, sometimes resulting in syncope[1] (fainting)-WAS IN THE HOSPITAL IN JUNE FOR SYNCOPE 
Other symptoms frequently associated with dysautonomia include: *Gastroparesis *(delayed gastric emptying),* headaches*, pallor, *malaise,* facial flushing, *salt cravings,* *mydriasis* (abnormal dilation of the pupils)IM TOLD I LOOK LIKE I AM ON DRUGS:/, *constipation*, diarrhea, *nausea, acid reflux*, visual disturbances, orthostatic hypotension, *numbness*, nerve pain, *trouble breathing*, chest pains, in some cases loss of consciousness and seizures.[1] Dysautonomia can also present with orthostatic hypertension.[2] A full list of symptoms may be found at the Dysautonomia Information Network.[3]


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## Andros

TickledPinkTwice said:


> Oh My Goodness!!! I found this!
> The symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person's quality of life. Each patient with dysautonomia is different-some are affected only mildly, while others are left completely bed-ridden and disabled.
> 
> The primary symptoms present in patients with dysautonomia are:
> 
> Excessive fatigue-YES
> Excessive thirst (polydipsia)-SOMETIMES
> Lightheadedness, dizziness or vertigo -YES
> Feelings of anxiety or panic (not mentally induced[citation needed])-YES
> Rapid heart rate or slow heart rate-RAPID
> Orthostatic hypotension, sometimes resulting in syncope[1] (fainting)-WAS IN THE HOSPITAL IN JUNE FOR SYNCOPE
> Other symptoms frequently associated with dysautonomia include: *Gastroparesis *(delayed gastric emptying),* headaches*, pallor, *malaise,* facial flushing, *salt cravings,* *mydriasis* (abnormal dilation of the pupils)IM TOLD I LOOK LIKE I AM ON DRUGS:/, *constipation*, diarrhea, *nausea, acid reflux*, visual disturbances, orthostatic hypotension, *numbness*, nerve pain, *trouble breathing*, chest pains, in some cases loss of consciousness and seizures.[1] Dysautonomia can also present with orthostatic hypertension.[2] A full list of symptoms may be found at the Dysautonomia Information Network.[3]


OMG!!! You are totally *"The Bomb!"*

Now what? Who will you turn to for confirmation? I'll bet you feel some anger at this point. I know I did when I was in a similar situation always being fluffed off.


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## TickledPinkTwice

Andros said:


> OMG!!! You are totally *"The Bomb!"*
> 
> Now what? Who will you turn to for confirmation? I'll bet you feel some anger at this point. I know I did when I was in a similar situation always being fluffed off.


I'M KINDA EXCITED! I'm sure I will be written off but I will take it to the Mayo Clinic if I have to. I will bringing it up to my Endo,though it says it is managed by a Cardiologist. I have been angry for awhile and maybe it isn't this but it is alarming how much of this is me, especially since it encompasses the whole body which has been my big problem. Thank you guys for your support!!!!!!hugs1


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## TickledPinkTwice

The more I research the more I think this is it, restless leg syndrome, intolerance to head and cold, light sensitivity....the list goes on and on


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## TickledPinkTwice

Ok actually it is a neurologist that treats it, how do I just make an appointment with one if I can't prove that is what it is?
What if this darn Thyroid hasn't caused all of the problems??????


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## TickledPinkTwice

TickledPinkTwice said:


> Ok actually it is a neurologist that treats it, how do I just make an appointment with one if I can't prove that is what it is?
> What if this darn Thyroid hasn't caused all of the problems??????


I am hoping I will hear back from the Mayo Clinic soon but I did some research and found a specialist in this type of disease.He is all the way in Toledo Ohio, but unlike many doctors he knows about this condition and how to treat it. Fingers crossed, someone will at least see me!


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## Andros

TickledPinkTwice said:


> I'M KINDA EXCITED! I'm sure I will be written off but I will take it to the Mayo Clinic if I have to. I will bringing it up to my Endo,though it says it is managed by a Cardiologist. I have been angry for awhile and maybe it isn't this but it is alarming how much of this is me, especially since it encompasses the whole body which has been my big problem. Thank you guys for your support!!!!!!hugs1


Our "favorite thing" is to be able to support and validate!

Keep us in the loop as much as you are able. And you are in my prayers for all good things including a diagnosis.

Ironically, we would rather know than not know; right? Instead of being fluffed off as a hypochondriac or "whatever!"


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## Octavia

TickledPinkTwice said:


> I am hoping I will hear back from the Mayo Clinic soon but I did some research and found a specialist in this type of disease.He is all the way in Toledo Ohio, but unlike many doctors he knows about this condition and how to treat it. Fingers crossed, someone will at least see me!


I'm excited for you about this!


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## babyrex

I hope you will get answers soon! I looks like you are on the right track! Again, good luck to you!


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## TickledPinkTwice

Thank you so much ladies!!
Please keep me updated as well!


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## TickledPinkTwice

I know my posts are always so depressing, but I feel like I can't do this anymore. I am so tired of being sick and tired. I am going to get fired:sad0049: I feel like a horrible mother:sad0049: I feel worthless.


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## Andros

TickledPinkTwice said:


> I know my posts are always so depressing, but I feel like I can't do this anymore. I am so tired of being sick and tired. I am going to get fired:sad0049: I feel like a horrible mother:sad0049: I feel worthless.


Oh, my gosh!! Dear sweet friend! You are worn out, sick and frightened. Anybody would be in your shoes.

I do find your situation very worrisome but I have never ever found your posts depressing. I and everyone here takes you seriously to the enth degree and have been striving to give you the validation you need and deserve.

We "know" you have a medical problem; but how do we get help for you? If I had a magic wand; oh, I do wish!!

I am praying so hard for you. There has to be a doctor out there who "gets it!"

Don't you have parents or a sibling nearby who could advocate for you? It's awfully hard to do this when you feel so bad all the time!!!

{{{{{TickledPinkTwice}}}}}


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## TickledPinkTwice

Thank you so much! I am such a downer and I hate to be that way but I don't have anyone else who can actually understands how it is to feel bad all the time. My husband is a wonderful father and husband but even he sometimes(I think) can't truly understand. I have help, but I have guilt to my daughters and even more worried that I will lose my job, which I love, but can't bring myself to get anything done


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## Andros

TickledPinkTwice said:


> Thank you so much! I am such a downer and I hate to be that way but I don't have anyone else who can actually understands how it is to feel bad all the time. My husband is a wonderful father and husband but even he sometimes(I think) can't truly understand. I have help, but I have guilt to my daughters and even more worried that I will lose my job, which I love, but can't bring myself to get anything done


You are so right; unless that person has traveled the road you are on, they cannot fully understandbut they can damned sure try!

Thank God for good husbands!

You are beating yourself up for no good reason. There is not a soul on this earth that does not have a hard road from time to time and worse; some never ever know what a good road is they are in such dire straits and states of deprivation.

We are here for you; lean on us. We "do" understand!!! Truly!

It's the doctors that are making you feel worthless. It happened to me as well. Totally disregarded, mocked and fluffed off for over 20 years. I had to seek professional counseling to get myself put back together again.

My analogy was that I compared myself to the Humpty Dumpty nursery rhyme. All confidence was gone. Etc..


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## TickledPinkTwice

You are right, and he does try!
I think even more than the doctors, in my experience, it is the nurses who automatically dismiss me. It's just depressing feeling like a waste of oxygen. I'm not happy others have experienced it but at least I don't have to feel crazy. Thanks for being here for me, even if it the majority of my problems don't turn out to be Thyroid related!hugs1


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## Andros

TickledPinkTwice said:


> You are right, and he does try!
> I think even more than the doctors, in my experience, it is the nurses who automatically dismiss me. It's just depressing feeling like a waste of oxygen. I'm not happy others have experienced it but at least I don't have to feel crazy. Thanks for being here for me, even if it the majority of my problems don't turn out to be Thyroid related!hugs1


You know that people put down others in the illogical hope of making themselves look and feel superior.

I never quite got that concept. I always felt that if I denigrated someone, it would make me feel badly about myself. And it would.

Don't pay these people any mind. Putting it in proper perspective can make you feel sorry for them as well you should.


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## bigfoot

A lot of what you are describing sounds very familiar to me and I'm sure lots of the folks here on the boards. It's not easy for other people to understand how it feels or what your limitations are -- they see you walking and talking for five minutes and figure, "no big deal". That couldn't be further from the truth; what they fail to see is the hours, days, and weeks of miserable signs & symptoms, self-doubt, stress, difficulty getting ordinary tasks completed, and just trying to maintain an even keel in light of everything.

Fortunately you have been given a direction to head towards a diagnosis with some tangible evidence. Actually to my eye, you probably have multiple things going on -- thyroid and adrenal. They are both very closely tied together. The good, _make that excellent_, news is that once these things are addressed and properly treated you will feel like a million bucks! It may not be 110% of where you were, but it will be far, far closer than right now. Blood levels can be measured, ultrasounds and tests can be performed, and treatments prescribed or suggested. It will take time, it will be frustrating, you may have to doctor shop or be "that annoying patient", but so be it... you WILL get there!

The best thing to do is grab a cup of coffee or tea, hang out here, read a few old posts, do your own research on the side, and learn to advocate for yourself as much as possible. Rest, try to relax, do things that don't have a lot of stress attached, and put some things on hold. It won't be easy for family, friends, and co-workers to understand this. That's OK. You can make that up to them later... right now you need to focus on yourself a bit. Good luck on this journey and let us know how things go!

:anim_32:


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## TickledPinkTwice

Thanks guys but I'm stressing a bit. I just found out that I have two week long business trips, one in September and one in October. Now, I have plenty of vacation but since we are approaching the last quarter I really don't want to take a whole lot of time off. That's two weeks just with business stuff. With Mayoclinic that would probably be another week. I don't know what to do. My health is important but my performance has been down from feeling horrible all the time. Ugh!


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## bigfoot

I can totally understand and relate. This probably isn't the most helpful or positive example, but I went from being responsible for traveling solo in three or four states for field work down to barely being able to press the right keys to send an e-mail or drive across town. This wasn't necessarily thyroid-related, but I learned to do what I could, ask for help with the rest, and accept what was beyond my control.

Depending on where you work and how long you've been working, you might have access to short-term disability or long-term disability. It's something to consider and ask your HR department; even unpaid leave such as FMLA so that you can be gone for three months' time without losing your job. Worst case scenario is down the road if you think it might be longer than a year, ponder Social Security Disability (if you do, be sure to lawyer up). Making sure your doctors are enlightened as to how you are (or aren't) able to take care of daily activities is a good first step, and they need to be on the same page as you. Keep copies of your labs, notes and dates of your doctors' appointments, and how you feel each day. This will go a long way towards having documentation should you ever need it.

In the meantime try to de-stress as much as possible and focus on what you _can_ take care of and do.


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## TickledPinkTwice

Not thyroid related but I wanted to show you guys exactly who it is I am fighting for, these little girls deserve their mommy!


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## Andros

TickledPinkTwice said:


> Not thyroid related but I wanted to show you guys exactly who it is I am fighting for, these little girls deserve their mommy!


What beautiful, beautiful little girls. My heart is smiling. Yes................they deserve their mommy and much much more!


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## Octavia

Well, I don't think the reasons get any better than that!!! They are cuties for sure!


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## babyrex

Oh TickledPinkTwice, your little girls are so adorable! Please take care!


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## TickledPinkTwice

Thanks guys! They are my pride and joy but have kept me busy since they have both been sick. I had my Gastroenterologist appointment this morninger, they are going to try me on Domperidone and I have a referral to speak to a physican about a Gastric Neurostimulator Implant. Tomorrow is my follow up with my Endocrinologist. My levels are normal and I am still exhausted, dizzy......etc When I spoke to him last he mentioned trying me on Oral Hydrocortisone so I anticipate that is what he will have me do, so glad I can be a guinea pig. I sent in the paperwork to Mayo Clinic so hopefully I will hear back soon. Have a nice day, back to work or at least attempt to work.


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## TickledPinkTwice

Well, Mayo Clinic declined me:/ I guess I have to stick with the docs around here. I had another fainting spell this week, these are becoming more common. Yea, that is totally normal:sad0049: I am a bit bitter. I am having the 30 day cardiac event monitor placed Tuesday, I guess that is a start.


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## Octavia

WOW! Did they give a reason? Not that I know anything at all about how Mayo accepts patients, but I have to say I'm surprised, based on what you've shared here.

I wonder if it's one of those situations in which you have better luck if you reapply or "appeal" the rejection (and possibly send new/more information), as then they would know you're serious??? Grasping here...


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## CA-Lynn

Forget Mayo and just go to a medical school/teaching hospital.


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## TickledPinkTwice

No, I received no reasoning as to why I was denied. All my doctors are stumped but apparently it isn't a big deal. I was thinking of going to a teaching hospital, there is one in the city but I am not even sure what type of doctor to see since my Endo is doing a good job with my Thyroid and checking my Pituitary and Adrenals. I'm seeing a Cardiologist too. Maybe a Neurologist but how do I set an appointment without sounding like I have already diagnosed myself?


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## babyrex

I am stunned Mayo declined to see you! Wow! CA-Lynn is right. Medical School/Teaching Hospital was my first choice. But when I found out my anti-bodies did not suggest Hashi's, I knew there was something more. So, I just called Mayo and they immediately made me an appointment. My insurance is ok, 70/30. But all I did was make a phone call. I agree with Octavia, reapply.

Backstory:
I had to ASK for a referral from my PCP. She did willingly. But the endo in my rural town could not see me for some time. Then, I had to ask her for another referral in a MO Teaching Hospital. They could see me sooner. However, something kept nagging me to go to Mayo. I simply could not ask her for ANOTHER referral.

It turned out my insurance did not need a referral to Mayo. Who would have thunk it? I made the appointment. Here's the glitch. When I called again to confirm my appointment, the operator at my insurance company told me Mayo was not "in network". What? I called again a few minutes later and was assured Mayo was indeed "in network"!

Perhaps you should try again. Otherwise, do go with a teaching hospital!


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## Octavia

I think it's worth a try to reapply...or at the very least, find out why you were declined.

My ENT and Radiation Oncologist are at a teaching hospital...and while it is a very good hospital, I don't think it's anything like what you would get at Mayo. At Mayo, there are so many doctors that see you, one immediately after the other, and they coordinate your testing and care, etc. At the teaching hospital I go to, the "process" is just like any other hospital, but the care may be slightly better quality (I assume).


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## javynliz

I have the same thing with the swelling. I'm so frustrated right now. I am on 60 mg of Armor. I am tired and I swell pretty bad in my legs, ankle, and feet. It does pit though. I don't know if I have adrenal issues but I strongly suspect I do. I also suspect autoimmune disease. I changed Doctors and we will see if I get some answers or not. I'm still experiencing hypo symptoms plus bone pain, headaches, cold hands, feet, and bottom. I feel like I have the flu. I have swollen lymph nodes as well. Also pain and inflammation in my right breast. Had ultrasound and mammo and thy said its a lymph node. Idk. Frustrating


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## CA-Lynn

Have they run 8AM Cortisol test to check for adrenal function?


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## Fissy

TickledPinkTwice said:


> Hello! My assumption is fluid but I am not sure, what exactly is that?


Sorry it took me so long to respond, I have to admit that I sort of admit that I forgot i posted here! I'll blame brain fog, lol.. I'm sorry!

Dysautonomia means dysfunction of the autonomic nervous system. Typically most patients will have trouble retaining fluid (we pee all the damn time!) but I have heard of some who retain. I had a quick glance through your thread and I'm sorry to hear you haven't really found any answers yet! A tilt table test may come in handy and explain why you're experiencing syncope. I experience a lot of faints with the type of dysautonomia I have called POTS which may be worth looking into if you have trouble with tachycardia. Other culprit could be orthostatic hypotension if your blood pressure is not so great when you're upright.

All the best!


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## jojo55

TickledPinkTwice said:


> Hi guys. I have been Hypothyroid for over a decade. Last year, they finally diagnosed me with Hashimotos. Currently, they are testing me for Adrenal and/or Pituitary problems(waiting to hear back from the doctor). I have had some strange symptoms as of late and believe me when I said I have had a whole range of symptoms the last 10 years (as most of you know).
> Of course, I am exhausted I sleep 9 hours at night and take two naps a day, which is not easy with 3 year old twins and a full time job. I have the hair thinning,extremem sensitivity to heat and cold....What has been the most bothersome is the headaches,dizziness, numbness, tingling and severe Edema in my hands and feet. A few weeks ago I was rushed to the ER for Syncope while at work. My blood pressure is extremely low but my ankles and hands are soooooo swollen (like when I was pregnant)and I'm a smaller woman. My hands and feet go numb and tingle like they are falling asleep.
> This is making it very hard to even function at home or while at work. Has anyone experiend any of this? I know this doesn't necessarily belong in this category but being that I do have Hashimotos maybe someone else has experienced this. Thank you!
> 
> ETA-The lastest labs show low TSH, low Free T4 AND low T3. Again, I am waiting on the results regarding my MRI, Aldosterone and Cortisol.


Hi I am new here and I am in the process of researching Myxoedema or Myxedema Crisis. My husband is very ill with hypothyroidism along with hemachromatosis (it is where the body cannot rid itself of iron, that is being managed). I haven't even had a chance to post our story yet. From all of my research I am pretty certain this is his issue at this stage and has been for a long while now. When reading your post it sounds like my husband. He has, as I call it, comatose sleeping. It is so strange. I will try to post our story asap. It has been going on for at least 15 years. But is very severe now. We live in the Dallas area and you would think you could find a doctor interested in helping. He feels like he is loosing this battle.


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## jojo55

hello, I am very confused as you can see only a fraction of my newbie introduction was posted here under post by TickledPinkTwice. I posted full story under the newbie introduction to introduce myself and poof it disappeared. Don't know how to find it? Any suggestions. I sure don't want to have to try to type whole story over again. thanks for any assistance for a newbie.


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## Danniswirl

Water retention is a classic sign of hashi. Your T3 is low. Find another endo and take control of your health. They will not. Check your adrenals, Vit d, b12, and get an electroylite panel done. Get those test done! Hope you feel better soon! Best wishes..


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