Have Hashimoto's

[Hashi-Me]

I am a 42y F.OBGYN put me on Levothroid 50 mcg after annual blood work with TSH of 5.38. Symptoms did not go away.I decided on my own (after some research) to see an Endo 12/06.  He did more blood work and a thyroid scan. thyroid was lumpy.  Results:
Thyroid Scan: Multinodular Goiter
T4 Free  1.28 (.89 - 1.76 ng/dl)
TSH Sensative 2.62 (.47 - 4.8 miu/ml)after 6wks 50 mcg Levothroid
T-Transglutaminase Iga 5.26 (<20 Units)Negative
C-Peptide 2.1 (.9-4.0 ng/ml)
C-Reactive Protein Ultra .69 (.07-4.94 mg/l)
Anti-Microsome (TPO) >1000 (0-34 iu/ml)

Diagnosed with Hashimoto's Thyroiditis 1/18/07.  Increased my Levothroid to 75 mcg and sent me home.

PROBLEM: Soon after seeing Endo in Dec. I had severe tightness in neck area (both sides)from behind ears to base of neck.  To this day it remains on my left side and is very tight.  I still have HYPO sympt including Panic Attacks and Heart Palps.  I mentioned this to Endo and he told me symptoms have nothing to due with Hashi's and go see a GP.

NEW Symptom: The past 3 days I have been experiencing light-headedness/faint, weak feelings prior to eating breakfast/lunch  like Hypoglycemic feelings.  Once I start feeling a little better I get a headache which increases the tightness to my jaw and neck.  

HELP: I don't know where to go from here.  I went to see a Cardiologist in Jan 07.  Checked my heart/stress/test/Echo/EKG all turned out OK.  I am really tired and depressed because I am scared and feel terrible and can't really function as I used to. I have a hard time sleeping and my neck really bothers me.

[Mark Lupo, M.D.]

Panic attacks and palpitations are more associated with hyper than hypo -- it may be an issue of getting accustomed to the new higher T4 dose (75mcg).  FBA/biopsy of the nodules may be indicated to confirm it's just inflammation from the hashimotos.  Often the goiter will decrease in size with a few months of optimal T4 treatment (goal TSH of around 1.0).  There is occassionally some tenderness in hashimotos - ibuprofen can help with this.  surgery is rarely needed unless there are severe symptoms or suspicious findings on biopsy.

[Hashi-Me]

Charley1986:  It's funny how people react to things that they can't understand (i.e., Sleep Paralysis).  I know that this is something that has been going on with people for a very long time. And for me since I was in my late teens. From what I have read it is not dangerous, however, it is VERY REAL and SCARY. Being aware of your surroundings and not being able to move in no better words "SUCKS". I have instructed my family members to wake me up immediately if I am twitching or making strange sounds (I know you know what I mean) I have noticed that since I started taking my thyroid meds (past 3 months)...I have not had the paralysis (ditto on the knock on wood!).  I am happy to hear that you also use prayer to help you through the tough times, sometimes I feel that is all we have to count on.

As for Perimenopause..I have repeatedly asked my OBGYN, whom is very caring and listens..he says "NO".  I have regular monthly cycles (heavy on the first two days)and my hormones, aside from my TSH, are normal. I do have XANAX and would like to use it, but when I told my ENDO he said "Get ride of those...throw them in the trash now!..XANAX causes seizures!!!"  I still have XANAX but now I'm scared to use it.

Yeah-"HYPERVENTILATING IN YOUR SLEEP OR ACID REFLUX" what a joke...this is why I've made an apt with another DR. that has been highly recommended, however waiting 2 more weeks will be tough!  Thank you Charley for responding and caring.  It's funny how (2-years ago)I took living a fun-filled carefree life for granted.  Traveled when I wanted, shopped for hours, played sports, ran...etc.. and now I'm a couch potato who stares out of the window wondering if I'll ever be the same as I once was.  Thank you again for your support!

[kellebelle4]

Hello,

I too know the constant worrying about my symptoms. I discovered I had Hashimoto's in 2000 after having precervial cancer. I kept having trouble with spotting before my period. My regular family doc is the first person to ever run the antibodies test. Anyway in a nutshell I started having panic attacks in 1994 and they have waxed and waned over the years. I am now 45 years old and recently have trouble with waking up in the middle of the night with my heart racing. I too have palps. My doctor sent me for a holter monitor and the results were nothing serious just pac's and my heart was racing at 160bpm at 1:30am. "Nothing you are going to die from" is what my doctor said. Anyway recently they checked my thyroid and the numbers were fine. In august they were bordrline hypo range. Sorry to ramble here but I am getting tired of  my midnight wake up calls, etc.Questions????? Have you experienced the sinus tach in the middle of the night?? Could this be my thyroid?? I will see a new Endo in March. I have a goiter about 20grams I think is what they said. Anyway I have always been scared to try the thyroid meds since a lot of the docters said my panic attack symptoms could flare up. Thanks for your input and for listening just trying to figure out which way to go since they pretty much said my heart is okay. Thank-you. Kelly

[Hashi-Me]

"Nothing you are going to die from" don't you wish the doc's could live in your body for one week...I bet they'd make changes lickity split! Most of my Panic attacks are throughout the day. It's as if any slight stress can set them off.  I'm curious who told you that you had a Goiter? I'm am newly on meds so I don't know if I can help regarding an increase in attacks...My meds don't seem to have made a difference.  Just when I think there working (4-5 good days) then WHAMO (4 bad days in row).  

I'm tired of the "Maybe it's phsychological"..I'm at the point where I'm telling the doc's "Look I have good insurance...Please run whatever test you think you need to" "I am not looking for sympathy...I had a great life..I just want it back!"

Sorry-I know this does not answer your questions, but maybe your ENDO appt will give you some answers.  Take care,

[charley1986]

Hey,
It started with sleep paralysis.  I would wake up from a nap or in the morning and I would be paralyzed for about 2 minutes or so.  There was a horrible feeling of 'impending doom'. Then I started having numbness and tingling on my left side - sometimes just decreased sensations on that side.  I went to a neurologist and they did and eeg and they diagnosed me with epilepsy - not grand mal seizures but petit mal.  I didn't believe that diagnosis and did lots of research and found out that there is a slight correlation between thyroid diseases and some neurological symptoms.  Although I have to tell you that the doctor here and my endo did not believe that to be the case.  I can only tell you that once my thyroid was gone, I have had NO neurological symptoms whatsoever.  I believe that a lack of B12 also aggravated my symptoms so i am also taking a supplement now.  The heart racing sounds like hyperthyroid which is likely if you have a goiter - although I am not an expert on that since I was hypothyroid.  I feel your pain about wanting to be you again.  I mourned the loss of myself and my health for almost three years - it was the most horrible time in my life and I suffered severe depression because of it.  I can only tell you to hang in there and soon you will have some answers - it is so hard with the whole waiting thing when you want to be normal again RIGHT NOW.  I will keep you in my thoughts and prayers.  Keep fighting for your health and don't give up until your problem is resolved.  I wish you the very best!
Charley

[charley1986]

Hey,
Me again....
I'm so glad you know what I am talking about with the whole sleep paralysis thing....some folks really thought I was nuts - but it is very very scarry - I wouldn't wish it on anyone.  Thankfully, I haven't had that since my thyroid was taken out (knock on wood)
I even "saw something" one night - and my doctor thinks that sleep paralysis can cause hallucinations - I saw a white mist - I followed it with my eyes (that's the only thing that could move) and it disappeared into the wall.  Ok...I must add here that my sister is "sensitive" and I have some "sensativities" myself.  I CHOOSE to believe that it was my angel sent to comfort me since the paralysis thing is so frightening.  I had also prayed before going to sleep that God would send comfort to me and would place a wall of protection around me and my son (had other things going on as well...but that's another story)...so I really need to believe that it was God's way of giving comfort - although I also have to say that it kind of freaked me out for a couple of minutes.  I finally was able to move and I sat up in bed - heart pounding - and saying to myself...ok, I didn't see that.....ok, yes I did...Finally got up and read and went back to sleep and all was fine.  My sister and my doc are the only ones - besides you now, that I have shared that with b/c I KNOW my friends would think I've lost my mind (really, its been gone a while!!!lol )
You said that you have noticed being "snappy" too - I saw you are 42 - could you be in perimenopause?  Have you had your hormone levels checked?  Duh - I'm sure you did since your GYN is the one who did your thyroid panel, too.  I just know that I am in perimenopause now - supposedly - and that happens to me ALOT!!!!  A glass of wine seems to help - and so does xanax!
I'm by no means a doctor - this is just my opinion - but I think you should find another endo - or atleast see one.  With your thyroid being lumpy like that and the symptoms you have - it makes me mad that he's not listening to you.  You shouldn't have to live like this.  THIS IS NOT NORMAL!!!  Call your gp and ask for another referral if you have to - you have that right.
The other neurological symptoms you are describing sounds just like some of the things that I experienced myself.
OK - HYPERVENTILATING IN YOUR SLEEP OR ACID REFLUX?!?!?!?!!??!?!?! GIVE ME A BREAK!!!  Find someone who will listen to you, chick - you don't HAVE to live like this - I hope it doesn't take you as long as it took me, and I am surprised - very surprised - that your doc hasn't atleast done another ultrasound of your neck and done possible FNA.  I hope that you get some relief soon - but you're in a good spot for support - so keep venting here and let us know how it goes!
Take care,
Charley

[Hashi-Me]

Thank you both for your replies.  I will re-do my thyroid scan (via my OBGYN) to see if the goiter has increased in size causing my neck tightness. As for the biopsy my Endo said there was no need for one...he pretty much poo pooed me, gave me meds and said G-day see you in a year. I am very disappointed that he did not listen to me regarding my symptoms that have not lessened after being on meds for 3 months.  I know that it could take awhile but come on I don't feel any better than I did when I first saw him.

Charly1986:  I too have Sleep Paralysis and was a little freaked when you mentioned it because unless you've experienced it people just think it's too strange.  My mother and my sister also have it.  I don't even take naps any more nor do I try to go back to sleep after I slightly wake up in the morning because of it.  It really reaks havoc on you when you are exhausted because of hashi's and you don't nap.  I have also experienced waking up with numbness down both arms into my pinky and ring fingers. And numbness or cold(icy) feeling down my right arm and leg that can last more than a few minutes.

I have read how you can by hyper then hypo.  My symptoms seem mostly hypo with the exception of the panic attacks and heart palps also I've noticed that the slightest thing can set me off and become extremely snappy.  I will be seeing an internal Dr. in March, but I'm thinking I will make an appt with SanSum Clinic in Santa Barbara CA and just let them run tests from head to toe.

Cynthiaann:  Did you have a multi-nodular goiter or what prompted the Dr. to request a biopsy? My Endo didn't seem concerned even though I told him that I felt like something was around my neck, tongue felt tingly and sore, I felt like something was in my throat and that I have woken up a couple of times gagging.  He stated "your probably just hyperventilating in your sleep or have acid reflux".

I'm just tired of being sick and tired, nauseated all the time, and panicky ;(

[cynthiaann]

I had a complete thyroidectomy last may. I had hashis, with nodules, and it turned out to be pappillary cancer (very curable). I had sudden tiredness, lightheadedness, heart racing...etc. hashi's makes your thyroid act hyper sometimes and hypo others until it finally kills off your thyroid completely...about.com has a thyroid section that may give you more info, and the mayo clinic. I had a great recovery from surgery and it took a while to straighten out the synthroid, but now I am great! it can be confusing, and while you are unwell, harder to concentrate (they told me it was menapause!) but consider seeing if your endo should do a biopsy of your goiter, and see what the results are. ASK LOTS OF QUESTIONS! good luck!

[Hashi-Me]

Thank you for your reply.  I'm curious what neurological symptoms you had.  This tightness in my neck and racing heart is so disturbing that I have a hard time relaxing.  It is almost as if I am on overload, but have no explanation for feeling this way.  When I'm in that hypoglycemic state I feel as if I am out of my own body (a dreamlike state).  And the constant dull headache is bothersome.

I hate this.  I need answers. I have scheduled an appt with a new doctor, but can't get in till 3/6/07.

This tightness in my neck did not start until the Endo started pushing on it.

I just want to be me again ;(

[charley1986]

Hey,
I was also diagnosed with hashi but only after I found out that I had thyroid cancer.  I had some other symptoms too like neurological symptoms - and found out after the fact that a pinched nerve was involved.  I am by NO MEANS a doctor - so this is just an opinion - but I have a friend who had a goiter and she experienced symptoms similar to yours - re: tightness in the neck.  She had another ultrasound done and her goiter had gotten bigger - real quick.  They did surgery and RAI and now she is doing so much better.  This is just a thought, but maybe you should ask for another ultrasound.  Only you know how you feel - not everyone is a textbook case.  Don't stop searching until you find someone to listen.  I wish you the best!
Charley