Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
KeriBaker
Hi All,
I was hoping you all could give me some advice.
I woke up the morning of June 26, 2010 and my world has been turned upside down. I woke up that morning with a terrible headache, tremors, and trouble breathing. I went to the ER and was basically told that I had a panic attack and they sent me on my way home.
Ever since that day I have progressively gotten worse. I have been to at least 30 different specialists/doctors and they still can't figure out what is wrong with me. I have had ct scans, mri's, stress tests - you name it.
I have a gut feeling that this has something to do with my thyroid but the only thing that I have had tested so far is my TSH (1.45) and my free T4 (1.0). The doctor told me that these were normal enough to not cause any concern and would not do further testing.
The reason I am asking for advice is because I recently found a really excellent doctor in NYC. They actually call him "The Real Dr. House" and he solves medical mysteries. I just want to have some ideas of what this could possibly be so that I might be able to at least steer him in the right direction and get some relief as soon as possible.
My symptoms are -
-pounding heartbeat all the time with occasional palpitations, sometimes worse upon lying down
-chest pain with a feeling as if I can't get a full deep breathe in. Saw a pulmonary doc and they did a breathing test. I did badly while breathing out.
-constant anxiety (which I have never had before). Don't know if this is part of what is going on or if this is because I am so worried about what is wrong.
-a constant feeling as if my throat is being squeezed, as well as a lump when I swallow. I have pain on either side of my throat where my thyroid is located (worse on the right side). I recently felt 2 lumps on the side of my windpipe which one of my docs said were probably just lymph nodes but I feel as if they are actually attached to my thyroid.
-almost constant tremors and shaking. This causes frequent urination and diarrhea.
-almost no appetite at all. The first 2 weeks of being sick I lost 15 pounds. When I do eat I have a constant feeling on indigestion and I get full very quickly. I then feel as if I have to burp and while trying I feel like I can't breathe.
-I have extreme muscle pains and joint pains.
-When I lie down I feel as if my jugular distends - each side depending on what side I am lying down on.
-I am always cold and shivering but my body feels like it is on fire inside.
-I went 5 months with no period. I just recently got one 2 weeks ago but it only lasted 3 days. Although I still have menstrual cramps even when I'm not on my period.
-I can see veins in my body that were never visible before. This might sound ridiculous but I feel like I see spider webs all over my legs, hips, arms, chest and neck - and they ache.
-frequent migraines.
-most recently - eye pain. Red eyes with blurry vision. I feel like my eyes are popping out of their sockets.
- A feeling of pressure/pain around my sternum area that makes me nauseated almost all the time.
-Insomnia. The only thing that helps with this is Klonopin because it is a muscle relaxer. The first 2 weeks of being sick I didn't sleep at all - at one point I went for 4 whole nights.
I know this is ridiculously extensive and I am sure I am still missing something. I had surgery for scoliosis in 1999 and had Harrington Rods placed in my back. I had partial removing of the rods in 2002.
I have recently read about Thoracic Outlet Syndrome and was wondering if this could be something to look into as well.
I am not sure if I am experiencing Hyper of Hypothyroid symptoms. Is it possible to have either one but those 2 pieces of blood work come back normal?
My doctor is sending me this week for more thyroid blood work - T3 total, T4 total, TSH again, and T3 uptake? Does anybody know what these will show and is there any other tests I should be asking for?
He is also doing a full hormone blood work testing on me but I can't go to get this until the 21st day of my cycle (about another week and a half).
Sorry about the ridiculously long post . I just need any type of advice anybody can give. If I can see somebody's personal experience then I will have an idea of what tests I want to ask for.
I feel like 3 months ago my life was completely taken from me and I have been completely miserable since. I recently was married last October and I feel like I cannot even enjoy being a newlywed.
Everyday is a struggle and everyday I experience each and every one of these symptoms. I am so sick of doctors telling me I have anxiety and casting me off like I am crazy - it is the most frustrating and humiliating experience. Not that there is anything wrong with anxiety - but when you know something is physically wrong with your body you feel as if you are just being cast off.
I finally found this doctor and I want to make sure he checks everything that he can be checking. Each day that goes by and I still don't have an answer makes me cry. I can't take much more.
I would really appreciate any advice or insight anybody could give.
Thank you & God Bless.
Keri
I was hoping you all could give me some advice.
I woke up the morning of June 26, 2010 and my world has been turned upside down. I woke up that morning with a terrible headache, tremors, and trouble breathing. I went to the ER and was basically told that I had a panic attack and they sent me on my way home.
Ever since that day I have progressively gotten worse. I have been to at least 30 different specialists/doctors and they still can't figure out what is wrong with me. I have had ct scans, mri's, stress tests - you name it.
I have a gut feeling that this has something to do with my thyroid but the only thing that I have had tested so far is my TSH (1.45) and my free T4 (1.0). The doctor told me that these were normal enough to not cause any concern and would not do further testing.
The reason I am asking for advice is because I recently found a really excellent doctor in NYC. They actually call him "The Real Dr. House" and he solves medical mysteries. I just want to have some ideas of what this could possibly be so that I might be able to at least steer him in the right direction and get some relief as soon as possible.
My symptoms are -
-pounding heartbeat all the time with occasional palpitations, sometimes worse upon lying down
-chest pain with a feeling as if I can't get a full deep breathe in. Saw a pulmonary doc and they did a breathing test. I did badly while breathing out.
-constant anxiety (which I have never had before). Don't know if this is part of what is going on or if this is because I am so worried about what is wrong.
-a constant feeling as if my throat is being squeezed, as well as a lump when I swallow. I have pain on either side of my throat where my thyroid is located (worse on the right side). I recently felt 2 lumps on the side of my windpipe which one of my docs said were probably just lymph nodes but I feel as if they are actually attached to my thyroid.
-almost constant tremors and shaking. This causes frequent urination and diarrhea.
-almost no appetite at all. The first 2 weeks of being sick I lost 15 pounds. When I do eat I have a constant feeling on indigestion and I get full very quickly. I then feel as if I have to burp and while trying I feel like I can't breathe.
-I have extreme muscle pains and joint pains.
-When I lie down I feel as if my jugular distends - each side depending on what side I am lying down on.
-I am always cold and shivering but my body feels like it is on fire inside.
-I went 5 months with no period. I just recently got one 2 weeks ago but it only lasted 3 days. Although I still have menstrual cramps even when I'm not on my period.
-I can see veins in my body that were never visible before. This might sound ridiculous but I feel like I see spider webs all over my legs, hips, arms, chest and neck - and they ache.
-frequent migraines.
-most recently - eye pain. Red eyes with blurry vision. I feel like my eyes are popping out of their sockets.
- A feeling of pressure/pain around my sternum area that makes me nauseated almost all the time.
-Insomnia. The only thing that helps with this is Klonopin because it is a muscle relaxer. The first 2 weeks of being sick I didn't sleep at all - at one point I went for 4 whole nights.
I know this is ridiculously extensive and I am sure I am still missing something. I had surgery for scoliosis in 1999 and had Harrington Rods placed in my back. I had partial removing of the rods in 2002.
I have recently read about Thoracic Outlet Syndrome and was wondering if this could be something to look into as well.
I am not sure if I am experiencing Hyper of Hypothyroid symptoms. Is it possible to have either one but those 2 pieces of blood work come back normal?
My doctor is sending me this week for more thyroid blood work - T3 total, T4 total, TSH again, and T3 uptake? Does anybody know what these will show and is there any other tests I should be asking for?
He is also doing a full hormone blood work testing on me but I can't go to get this until the 21st day of my cycle (about another week and a half).
Sorry about the ridiculously long post . I just need any type of advice anybody can give. If I can see somebody's personal experience then I will have an idea of what tests I want to ask for.
I feel like 3 months ago my life was completely taken from me and I have been completely miserable since. I recently was married last October and I feel like I cannot even enjoy being a newlywed.
Everyday is a struggle and everyday I experience each and every one of these symptoms. I am so sick of doctors telling me I have anxiety and casting me off like I am crazy - it is the most frustrating and humiliating experience. Not that there is anything wrong with anxiety - but when you know something is physically wrong with your body you feel as if you are just being cast off.
I finally found this doctor and I want to make sure he checks everything that he can be checking. Each day that goes by and I still don't have an answer makes me cry. I can't take much more.
I would really appreciate any advice or insight anybody could give.
Thank you & God Bless.
Keri
However, I have been to a Gastro and had an endoscopy performed. I do not have GERD or a hiatial hernia.
I have also been to see a psychiatrist (at the request of my mother) and he will not diagnose me with anxiety because he believes I have something physically wrong with me.
Keri
http://www.endocrineweb.com/hyper1.html
Hyperthyroidism can actually be triggered by injuries, surgeries, illnesses etc... not just something in your genetics. If you are really having these symptoms, tell your doctor to check not only your free t4 and TSH, but Total T4, Total T3, Free T4, and Free T3. Ask for an ultrasound of your thyroid to confirm the nodules you seem to be feeling. You may have something else that is acting like hyperthyroidism, but you seem to have too many of the symptoms for that to be likely. I think you should definitely investigate it. If no one else seems to be listening, go to an endocrinologist!
Hope you find answers you are looking for! Ashley
Just from reading your post, I am very tempted to agree with you. Sounds very much like HYPER and all the impacts it can have.
Make a fuss, be heard. Don't let it linger for years, take my word on that!
Keep us posted too.
All the best.
Can I ask what you both have and how you were diagnosed?
I know some people go years not knowing what is wrong with them and I could not imagine that - hopefully that won't be my case! I have been like this for 3 months and I can't take it anymore!
It is the most frustrating thing in the world to feel something physically wrong with your body but everybody wants to point to anxiety.
I am so happy I found this group. It makes me feel like I am not alone.
I went in this morning for more blood work. They did TSH again, total T4, total T3 and T3 uptake - whatever that means. I will know in a few days if anything is going on there. As crazy as it sounds...I hope that they are way off just so I can get a diagnosis! Even if they come back normal I am going to ask for an ultrasound. I know I feel nodules or some kind of lumps in the area.
Thanks again ladies! Have a great evening!
If by chance ,you are diagnosed with Hashimotos, that means that your thyroid can go both hypo and hyper, and you might just be in the hyper swing at the moment. Good luck getting some answers, you will feel loads better when you do, no matter what the outcome.
Felicia
I am not doing so well this morning. This feeling in the side of my throat makes it hard to sleep normal. So I usually wind up sleeping quite a bit propped up. Well last night I must have pulled an extra muscle because now my neck, head and eyes are killing me because of this.
I'm just getting impatient. I want to get these results back as quickly as possible but now I am worried I am not even getting the right tests done. If I feel lumps in my neck I should definitely be getting my antibodies tested right? Does anybody know what T3 Uptake tests for?
Barbell - Did you notice the nodules on your thyroid gradually or did they come rapidly? I felt a little something when this first started and now 3 months into it I feel about 3 decent sized lumps on the right side of my thyroid.
In Hashimotos - this causes both hypo and hyper symptoms correct? What blood test diagnosed the Hashimotos, the antibodie?
I just want to make sure I ask my doctor for the right things.
Ninja - How are you diagnosed with adrenal fatigue? Is there a certain hormone that you would be high/low in? My doctor has ordered me a complete hormone panel but I have to wait to get blood taken until next Thursday because it has to be the 21st day of my cycle.
Felicia - What is an uptake scan? An ultrasound? I think that is my next step after these tests. I am sure I feel lumps on my thyroid and I wish my doctors would just skip all this other nonsense and take a look at it already.
I am so sorry to hear of everybody's struggles. It is so nice to be able to write to people who understand what you are going through and don't think you are crazy.
I am not a very religous person (well I haven't been since I was younger) but I went to mass on Sunday and my husband asked the priest to bless me. I am praying everyday that I get some answers and quickly. I will pray for all of you as well.
All these struggles just make us stronger :)
The link was kindly suggested by Barbell recently.
http://www.ei-resource.org/articles/related-conditions-articles/suggestions-for-an-approach-to-the-management-of-thyroid-deficiency/
I heard you say that you hadn't had a period in a few months? Have your female hormones checked as well..progesterone especially, estradiol, testosterone..the firely feeling inside sounds like my menopause.
I've had panic attacks before too..not saying that's what's wrong w you-I felt obcsssed about physical things, like I was going to die..was sick like you're describing, lost tons of weight..but w what you've said so far, trust your psychiatrist..there has to be something wrong physically-that's a no brainer for sure. You know the Mayo Clinic in Rochester is known for finding "mysterious" diagnoses and they hook right up to the Doubletree Hiilton property by a cross bridge connecting the 2. Keep searching, I know it's hard when you feel so rotten..also the hotel has hospital discounts..hoping you find an answer soon..hugs
I did a complete adrenal panel four times in one day. My cortisol was very low, nearly zero all four times. My DHEA was normal. I would definitely ask to have you cortisol checked, because if there is a problem with your adrenals then that has to be addressed before doing anything for your thyroid. there are a couple of good websites to look at for the adrenals. One is stopthethyroidmadness.com and adrenalfatigue.com
Beazer - I cannot tolerate caffeine one bit. And the funny thing is before this all started I used to drink 3 to 4 cups of coffee a day. Even just a sip of coffee will give me crazy crazy hyper symptoms.
Krissy - Thank you so much for the link. I will definitely take a look at this.
Tomcat - Thank you as well for the info. I recently had my estrogen and testosterone tested and I have almost double the amount of testosterone that I should. I am scheduled to do a full hormone panel next Thursday (the 21st day of my cycle).
Barbell - Thanks for the info. I feel as if my nodules are coming on quite slowly as well. However the past week or 2 I have been getting some pretty sharp pains on one side - not sure what that means?
Ninja - I am scheduled to do full panel of hormone testing next Thursday. My DHEA as well as my cortisol. I read up on Adrenal Fatigue and a lot of those symptoms sound like me as well. I have one question for you - Did you experience any circulation issues with the low cortisol? I have read that this can impact your circulation. I already have bad circulation to begin with but have been noticing it getting worse through all of this. I can't find anything relating to circulation and thyroid (which makes me worry that I have something more sinister going on) so I was happy to see something regarding circulation and cortisol.
So - I had a pretty bad day today and my week had been actually so so up until that point. I live in Queens and work in Manhattan so I take the subway to work every morning. I was standing this morning when out of nowhere I got tremors, extreme dizziness and everything got fuzzy. I nearly blacked out, fell to my knees and threw up on the subway in front of everybody (awesome). So my husband had to drive into the city and take me home. Thank goodness I have a job that has been understanding through all of this. I seriously feel as if I cannot function until I get a diagnosis and I am on the right meds.
The only thing that helps me in the meantime is Tylenol 500 (for my migraines and stiff muscles) and Klonopin. I originally got prescribed Klonopin from one of my original doctors that thought I was just crazy and actually found that this is the only thing that gets me to sleep. I hate that I take it because it is an addictive drug but I figure I can wean off of it when I am on the correct medication.
The anticipation and waiting is driving me crazy. If only blood tests came back sooner.
Thank you all again for your kind words and advice. It truly feels great so speak with people going through the same symptoms you are and feeling like you "belong" somewhere.
Keri
Now my temperature is more consistent.
I was always so dizzy. I would take it very slowly rising from laying, also if I had to stand I had to do so slowly. Just a few minutes ago I was dizzy and realized I missed my last dose of adrenal cortex. As soon as I took it I felt much better.
I hope all goes well for you tomorrow. Please let us know how it goes.