Tammy67

Hello I am a female 39 who has had symptoms ranging from visual disturbance, fatigue, weight gain, inability to lose weight, mental fatigue including memory, confusion, (brain fog) headaches, tingling hands up to shoulders at night when trying to sleep and tingling in feet also (sometimes even just sitting in a certain position) sensitivity to cold, & light, racing heart while idle, low blood pressure 90/60 and more recently tight feeling in chest, choking, trouble clearing my throat, hoarseness, I started to tell my doctor of my symptoms a few months after the birth of my third child three years ago. My optometrist said I had swollen vessels behind my eyes, she said it was a warning sign of something to go to my doctor. he did the usual blood tests (normal) sent me to an eye doctor
eye doctor called it some kind of optical migraine. as my symptoms got worse I started to feel depressed went back to my Doc this Jan told him I was not comfortable with diagnosis of migraine. agreed I was a little depressed was given wellbutrin I told him I wanted to see a neurologist he agreed referred me and set up a ct scan of my head test showed cyst in my brain but doctor said it was nothing, went to neurologist upon examining me in his office told me he didn't think anything was wrong with me, but was sending me for a couple tests blood, e.e.g. and cartoid ultrasound. the tech who performed cartoid ultrasound, decided to also do a thyroid ultrasound and found I have multi nodules on my thyroid one of them being 1 inch in size and having both cyst and solid tissue. My thyroid is also very enlarged. My doctor insists this is a total coincidental finding and that my symptoms are not caused by my thyroid because my TSH level is a 1 so my thyroid is working fine I asked him to test my antibodies and he did I don't know my exact numbers but the nurse did tell me one came back high, I am so scared that I could have thyroid cancer. My doctor has made a ref to a Endocron for me but I am terrified, If anyone has any similar situations I would like to here from you.

[SuzieQTT]

WOW!  this is all so familiar...all the symptoms you talked about are just like mine. I am a 45 yr old mother of 3, ages 23,20 and 7. Even my blood pressure was 98/68.  For the last two years my symptoms have gone from mild, moderate to severe.  Along with these symptoms I also have an enlarged tongue, tingling and numbness in my lips and irregular heavy periods.  I am on Zoloft for depression. I was told I had migraines and my doctor took my glasses and contacts away stating that didn't need them.  Confusing! Especially since I still have blurred vision but will revisit this after my surgery and treatment.

My doctor sent me to one endo that wouldn't listen or discuss my numbers with me and also discounted a lot of my symptoms...he stated they are not caused by my thyroid problems. After being unsatisfied  with him I switched to another female Endo who immediately ordered numerous tests to rule out hormone imbalance and vitamin deficiencies (especially B12 and iron) thyroid levels and antibodies.  She then sent me for a nuclear scan of my thyroid.  

What I have since found out is that my thyroid is extremely enlarged and is wrapping against my windpipe, pressing against arteries and nerves in my neck, which causes alot of problems with my fingers and wrists being numb, tingling and swollen and limits my ability to turn my head left or right.  My face is puffy and swollen my eyes are puffy and I feel alot of pressure in my face, eyes, hands and arms.   I have a tumor on the right side of my thyroid which is as big as a ping pong ball (surgeons words not mine) and I have 5 nodules on the left side.  My thyroid has become substernal which means it is about 4 inches below my collarbone. The goiter in my neck is the size of a large grapefruit (once again surgeons words) 4 inches on the left an about the same on the right with the 2 inch space in the middle, but you can't see that part from the outside which means it has gone inward and thus causing all the pressure and problems. I don't know what all of my TSH levels are but my endo advised that she would discuss with me in great detail at my next visit.  I am not in menopause as I was told by my last endo...even though he didn't test for the FSH and other hormones.  She did tell me that I was hypo with occasional times of hyper which accounts for "normal" levels in the past. She also advised that she needed to see my B12 and iron levels and filed the paperwork to get past tests from my other docs.  She strongly stated that prolonged B12 deficiencies can cause major problems...permanent periphial neuropathy which can present as stiff limbs, severe headaches, confusion and numbness in limbs.  B12 as well as other vitamin deficiencies sometimes happen after given birth.  Even though my last child was born almost 8 years ago she stated that it could have started then.

My new endo, who I think is fabulous by the way, advised me that all of my problems ARE related to my thyroid,  She even thinks that the pressure and ringing I am feeling in my ears could be caused by it as well but will test that more later after surgery.
Through our discussions we decided that it would be in my best interest to remove the thyroid totally.  Upon second opinion it was advised this would be the best decision for me and my situation.  I am scheduled for a Total Thyroidectomy on Tuesday, June 26th at11:30.  At that time they will perform a biopsy on the tumor and nodules as will as other tissue as needed.  I should hear something from that in a few weeks.  

I have been so scared of what is coming up but I will tell you that I have gotten so much information and support from this forum that it has helped so much.  I have learned most of all if you don't feel comfortable with a doctors opinion or diagnosis...follow your gut instinct and talk to someone else for a second opinion or even third if need be until you are confident that you are receiving the care you need.  It is your life, your health and there are docs out there that really know what they are doing when it comes to the thyroid.

One thing I started doing some time ago is taking a Voice Activated Recorder into the exam room with me.  I tell them it is because I forget some things and need it to refer back to.  My docs haven't had a problem with it so far.  
Sorry if I seem to be rambling...it is late and I wanted to say so much and it just seemed to come out.  Hope this helps somewhat.  Best of luck!
Sue

[SuzieQTT]

[Tammy67]

Thanks for writing back, I'm sorry you are going through all of this and I wish you all the best with your surgery.  but I grateful to here that someone else has these symptoms too! and that I'm not crazy like my family doctor has been making me feel, I went to my O.b./Gyn today and had him look at my ultrasound results and blood work for thyroid antibodies, My TSH again was 1 but Anti-thyroid P was high 100 IU/ml he noticed that my free T4 was not tested and ordered this test he also explained a little to my about multinodular goiter and offered to call the endo that I was ref to see if he can get me in sooner.  my b12 and all my other blood work has been fine so far it was tested last month, I will find out about the free T4 in a couple days, in the mean time I will be thinking of you and praying for a speedy recovery, please let me know how you make out!
God Bless and take care
Tammy

[MareB37]

Hello all. I'm so glad I found this forum to find out that I'm not alone in this. I was diagnosed with a hypothyroidism after I went through a very expensive sleep study to try and figure out why I was getting sleep apnea. It turns out that I don't have sleep apnea because I didn't stop breathing more than 3-4 times during the study, only 2-3.  So that didn't help, but they did discover my goiter.  Since then (about 8 years ago) I've been taking 88mcg of synthroid but I still have problems with my goiter. I occasionally have bouts of sleep apnea, trouble swallowing solids at times, fatigue and depression, dry brittle hair and sensitivity to cold and heat.  I sweat profusely when everyone else around me is fine. It's really embarrasing and depressing.  I also have a problem with having huge lacrimal glands where my eye doctor thought they were some kind of tumor behind my eyelids.
I'm most concerned with my swallowing/choking problems.  I think I have a substernal goiter because of all of this.  I have occasional pain in my right clavicle (collar bone) and it feels like a heart attack. I too have a racing heart when I'm resting.   Should I persue this substernal goiter?  I just got back from an ENT who wants to do a swallowing study. I just want to go and get a CT scan of my neck.  I feel like giving up sometimes because the doctors don't think I have a problem.   Does anyone have any suggestions to what I should do next? HELP! Your advice and comments are very much appreciated in advance. Thanks.  Mare

[skymax2000]

MareB37, unfortunately, with thyroid disease you have to be your own advocate and push for treatment. Demand an ultrasound of your thyroid. Go to another doctor if you have to. When you read these forums, what you'll find is that many people with thyroid disease KNOW there is something wrong with them but then went against there own instincts and trusted their doctors only to misdiagnosed or not diagnosed for years. Please do something today! I lived with Graves disease and hyperthyroidiam for over 10 years and my doctor still doesn't think that I could have had it for over 10 years. Although, I spent most of my twenties sick, tired, and depressed with all the symptoms of hyperthyroidism.

[Tammy67]

I agree you do have to advocate for yourself or you'll get no where! I have been suffering with symptoms now for two and a half years and am just finding out now that I have a problem with thyroid and they still don't think my symptoms are related, don't give up ask for an ultrasound on your thyroid and see what happens from there!  Good luck!
Tammy

[MareB37]

Thanks for the advice! It helps to hear it from people who have been suffering through it too.   I will keep pushing for someone to give me an answer.  Mare

[skymax2000]

Also, something else to pursue...Ask if your medication could be making you hyperthyroid. Because overheating, eye problems, rapid heartbeat sound like hyperthyroidism. I'm not an expert but I had those symptoms.