please someone help me PLEASE!!!

[kimber529]

Hello to anyone out there that can hear me. I have been diagnosis with hoshimotos for almost 16 years and the past 5 years I have been sick and it is one thing after another. I am sick of being sick and my friends, family and coworks are thinking I am a hypocondrac (sorry on spelling) See this is my story in short.  My story starts out as me thinking I was coming down with the flu that so far has lasted for five years getting worse every day. My symptoms are: intolerence to cold, mood swings( horrible), Facial hair, tremors (that are driving me crazy), unable to sleep (I just recently stayed awake for more then 50 hours but I mostly get about 3 hours a sleep a night), palpatations (have ended up in the ER twice in the past 2 years for chest pain the last episoide caused me to have two leaky valve and two heart mumors and was told the chest pain is related to my hashimotos), I can focus, I AM GETTING VERY DEPRESSED VERY DEPRESSED, my vision is becoming foggy, I have difficulty swollowing, I feel like I am walking around with someones hand around the front of my neck chocking me, my periods are horrible, I am having severe joint pain (knees, hips and back), and just recently I am sweating excessively, these are a few of my problems. I am tired of seeing doctors who dont know what to tell me. When they check my T3 and T4 they are within normal range but my antibodies are extremely high and they tell my thyroid is producing normally so as soon as it is not they will do something. Well I also have multinodulars on my thyroid that just keep getting larger. Last year they sent me for a biopsy because on my thyroid scan it showed some nodulas that could potentially be or become cancerous. Well when the doctor doing the biopsy open my neck he told me that he felt that the dotor that wrote the order ment to request the right side to be biopsied instead of the left. He also said that he would get a couple of the left side and send it because that is what they wrote but he was also going to sent some of the right side because he felt that is where there was concern. Well he got the first vial tissue and the pain was so bad that I was sweating perfussely and shaking uncontrollabley. They stopped the biopsy then I lost my voice I could not talk for more then four hours and they thought they cut my voical cords. Well my voice came back but for the following months I couldnt talk more then a wisper and then it would come and go. Well the doctor doing the biopsy told me they sent what they got but not being able to get to the side he seen concern in I would need to come back and have it repeated. Well my doctor got the report from the one he sent which showed Hashimotos and he felt that it didnt need repeating because it came from the side that he wrote to be biopsied. I keet getting worse with no help........I have went to another Endocronogist and he told me my problems were not my thyroid but my addreal glands and set me up for a 24 hour urine which was fine basicly treated me like I was a hyporcondract. I am not one I JUST WANT TO FEEL NORMAL AGAIN. CAN SOMEONE PLEASE HELP ME FIND A DOCTOR THAT IS UP TODATE ON TREATING HASHIMOTOS. I AM TO YOUNG TO FEEL LIKE GIVING UP. I

[kimber529]

Hello I was wondering how you are doing? Have you had your surgery?

[kimber529]

I know it has been a while but I was just wondering if you are still on here and was wondering how you are doing?

[msfergy]

Wow thats just what I want to hear!! I hope it works for me..........I see you had the real high antibodies to, and where was all your pain? I have a major problem in my ankles and right leg right now, i have argued with the orthapedic surgeon over it because he acts like it is my thyoid and said well nothing is touching your nerves according to mri, also i get like water drop feeling and just wierd stuff all the time. Did you have all that to?

[kipland]

Wow.  What a rollercoaster you've been on!!  I feel so bad that you had to go through so much to get where you are today.  I'm so glad that you ended up at U of M, though.  They're awesome there, although I'm really tired of traveling there this week!  I get today off, but am back there tomorrow for another scan to see what the radioactive iodine is doing.

Please keep us posted as to what pathology has to say.  If you end up having to do the RAI treatment, let me know if I can answer any questions for you as I am in the process of going through it as I type.  In fact, I'm in my "isolation" period right now.  It's not bad, though.  And the thoughts of being on the meds now and starting to feel better has given me a whole new outlook.

God bless you for pushing on until you found the right doc's.  I'm quite sure you're on your way to feeling better than you have in years!!!  

Lori

[kimber529]

DEAR TINA, I dont know if I call you how the surgery help me yet I had a total thyroidectomy and it was dont 6 days ago. I was told that it will take at least 2 weeks for all the swelling in my neck from the surgery to go do so I still have the choking feeling. Then they have to stablize my thyroid hormones with medication so I go back on oct 2nd for repeat blood work which also includes a calcuim level because I also have to be concern with that now. Then they have me on so many pills right now I am on a steroid, a beta blocker along with calcium multi vit. (and vits have made me sick for years I have had a really hard time finding any vit. that I can keep down) then motrin for pain then armothyroid so I have been not feeling so great but I think it is mostly due to the pills and I will be off the steroid and beta blocker in a couple of weeks and I think those are the two that are making me feel sick. But my pain is completely gone other the the discomfort from the surgery swelling which gets better everyday. I will keep you all up todate on the progress. Just dont give up.
Kim

[msfergy]

So how are you doing now? I am in the same situtaion as you but they have me scheduled to have my left lobe taken out then if needed they will do the rest, so did it take away all the horrible symptoms? I have extremely high antibodies to, so I found out after making another apointment with my original doc office i been going to and found out they have been in the thousands since 2005 and they never done nothing about it except prescribed me levothyroxine 25 mcg. well as you know i got real sick at the beginning of this yr. and now going on 9 months still trying to get everything taken care of! I have the noduals which are small and the one on the left was the one they want because it wasnt a definite cold one, and i have goiter to, also my tounge has been way bigger and always looks white drives me nuts.So anyway I was just wanting to know how much the surgery helped you and what they came up with in pathology. Thanks
Tina

[zaksmom]

Thanks for your helpful hints and thoughts.  I really do appreciate it!  I'm glad that your surgery was a success, and that you're feeling better.  You are so right -- everything you said just hit the nail on the head!  I'm still waiting for my referral info --- the gal who sets all that up at my primary care doc's office is a real B---H -- she called me at home last Thursday, she wanted to discuss if this was something I really felt was necessary.  After much arguing, I told her point blank, YES, I would like a referral to U of M.  she just said "fine, I'll work on it".  Well, that was Thursday, it is now Tuesday -- I'm quite sure that it really doesn't take that long to get something like this accomplished.  Can realistically be done in a 5-10 minute phone call.  I'm going to call this morning to find out where everything is at - and if necessary - as for her supervisor.  This particular woman acts like She is the one who chooses your healthcare, not the doctor.  Unfortunately, that is the type of person I've been dealing with the entire time I've been working on trying to find out what is the root of my problems -- the doctor would run a test and tell me that they will call with results and set up further testing based on results.  I'd call 3-4 weeks later, and unfortunately you have to talk to this gal -- she'd just say "yes, you're fine, test is normal" -- I'd explain to her what doc had told me, she just kind of sneers and says "well, he didn't tell me that - so - looks like you're perfectly fine" and she'd end the call.  My primary doc is really really nice, takes lots of time and listens -- has run numerous tests to make sure other items were not the culprit, but doesn't have experience in thyroid.  He has such a large patient load it literally takes 2-3 months to schedule an appointment -- and he does lack the follow thru (and does not have the support staff to follow his own instructions in chart).    People like that really force the "it's all in your head" theory.  

Yes, from here on out, I am taking your advice!  I do have copies of my labs and ultrasounds -- I guess that is what made me so upset this time.  I "can" read, I'm not the idiot that the gal at the doc office thinks I am -- the radioligist rept. on my ultrasound clearly states the issues -- why did the endo (jerk I was referred to) refuse to explain or do anything?  We'll just see what U of M says!!  I just want to feel better!

Thanks again for your thoughts!  I really appreciate it.  Keep me posted on how your doing -- and when your RAI is.

betsy

[kipland]

Hey you ~ I don't have time this morning to read all of your posts, as I'm heading to U of M myself today.  BUT, I'll try to catch up when I get home later to see what's going on with you.  If you need anything, let me know.  
Hugs!
Lori
PS - they ARE wonderful at U of M, aren't they?  ;-)

[kimber529]

Hello Betsy, I seen Dr. Miller there and she was great, listen to my problems, truely listen to my problems and understood my concerns and the need to feel normal. She did some test and at the end of my appointment she scheduled me for surger for a total thyroidectomy. The surgery was on 9/14 and EVERYONE AT U OF M WAS GREAT AND TREATED ME WONDERFUL I COULD NOT SAY ENOUGH GOOD THINGS ABOUT THAT HOSPITAL. The surgery took about 3 hours everything went great I was kept over night  and now I wait for the pathology report which I was told will take 10 days to get. During the surgery I didnt lose some of my parathyroid which they try to avoid but with my form of thyroid problem one of the parathyroid had enbedded in my thryoid nodule tissue and the surgegeon was unable to retrieve it and replant it. Though I was told that I would do fine with just one even better out look with the 3 of 4 still inplace. It is still to soon to know if it help due to all the swelling in my neck but I can tell you I have already noticed many of my sypmtoms are much better. Saturday mooring was the first time in four years that I woke up with out a trace of even one tremor though all the doctors refuse to admit is related to my thyroid. Yet they are gone no longer feeling like my insides are on a washer spin cycle.
Betsy, I understand your frustration with how you feel and it gets worse the more you try to find help. You start to wonder if the doctors were all right and that it is in your head, and maybe it isnt your thyroid but depression so you take the pills that dont work so you try another one which doesnt work then you go to the next and the next till you find the one that really dont fix the problem but makes you feel like oh well and you just drag through life  "blah". What kind of life is that and then when you you still know inside that something is wrong and that you are not that person you have always been and you want it so bad but no one will listen. They look at their books, your labs, your test and tell you that with the results you have dont line up with your labs/test results so the problems is not your thryroid and that you are depressed. But what if your body does not like to function at the levels that are recorded by the lab or the findings on the test and scans. What if your body is "DIFFERENT FROM EVERYONE ELSE AND DOES NOT RESPOND THE WAY THEIR BOOKS SAY THEY SHOULD". Such as they tell us that not all persons body responds to medications the same way so why should our bodys respond to illiness and health problems the same way????? Does this concept make any sense. Plus when if you do any research on your sypmtoms and things keep pointing to one condition but the doctors all disagree then what do you do. Do you believe the doctors who read the books that you used to research your symptoms or do you believe the books/and website that these same doctors use to search for help. I tell you what you do, DO NOT LEAVE YOUR HELP UP TO YOUR DOCTORS, IF YOU FEEL THAT THERE IS SOMETHING WRONG DO NOT GIVE UP KEEP YELLING TILL SOMEONE HEARS YOU. DO NOT ALWAYS TAKE WHAT THEY DOCTORS GIVE YOU AS TRUTH. QUESTION THEM EVERY STEP OF THE WAY. MAKE THEM WORK FOR YOU AS YOU ARE TO. BUT YOU ALSO HAVE TO HELP THEM TOO. DOCTORS TODAY ARE FORCED TO TAKE TO MANY PATIENTS AND DONT HAVE ENOUGH TIME IN THE DAY TO REMEMBER EVERY SYMPTOM OR TEST OR ILLINESS. KEEP TRACK OF EVERYTHING FOR YOURSELF. I TELL YOU WHAT I HAVE DONE. EVERY TIME I GO FOR A TEST/BLOOD WORK/ CONSULTATION EVERYTHING I GET A COPY OF IT AND I HAVE A CHART AT HOME. I ALSO INCLUDE A SECTION OF THE CHART FOR MY NOTES ON MY RESEARCH MY SYMPTOMS EVERY SYMPTOM NO MATTER HOW LITTLE THEM MAY SEEM THE LITTLE ONES CAN ADD UP TO SOMETHING THAT MIGHT TRIGGER SOMETHING WITH THE DOCTOR. ALSO I TOOK THIS CHART WITH ME TO U OF M. This will help you when you go to knew doctors to keep from ordering repeated unnessary test and labs. This will also have them something to compare the repeat test to. I also have a section for actual copies of the films. I always get a copy of the films. It is nice now they put them on DVD great for storing expceially in my chart at home.
Betsy, I wish you the best of luck and will hold you in my prayers and hope that you will find your true self again. So you can be healthy and happy again.
I had a girl-friend who took what her doctor was treating her for and even though she question him and took his answer and for a year was treated for a urinary tract infection that never went away and after being in his office once a week for almost a year she was in his office and pissed because it was not going away and was yelling at him, his response was that she was a nemphomaniac and that if she would stop having sex and give the infection time to clear up it would go away...... Well with a 5 year old and a 9month old baby at home and working sex was not at the top of her list expecially with the abdominal pain for almost a year she barely was having sex a couple times a month and that was to pasify her husband. She left his office very pissed off and ended up getting into a car accident on her way home. Though the accident was not life threating she was treated in the ER still complaining of the abdnomal pain the ER doctor did a catscan and found colon tumors and after a colonscopy she found that she had colon cancer at age 30 instead of a uninary tract infection. She battled the cancer which was a horrible battle for 3 1/2 years and it was the absolute worst funeral I have ever been too. So I have will never take what the doctors are telling me, question, push them be part of your health and healing. If you dont your doctors are not to blame. You know there is something wrong I believe that and when you have that gut feeling dont give up. I know that there are some people who are hyprocondreacts but I dont believe that there are that many of them in the world. Good luck and sorry about the babbling but I truely know how you feel.

[zaksmom]

I am so glad you're getting help!  I haven't gotten my appointment with U of M yet -- hoping to hear something today or tomorrow (have to have a referral from primary doc -- who's office staff treat me like total dog meat - attitude of it's all in my head).  If I don't hear by tomorrow when my appointment is, I'm going to call them and find out what is up.  Who did you see at U of M ??? I'm curious, since I'll be there soon.  I'm going thru pretty much the same things as you, and really am hoping for something positive to happen -- I hate not feeling "normal" -- don't know if I even remember what that is!  I'm just so happy for you - to finally receive the needed treatment!  I hope this is a positive end to your problems!

I'll be thinking of you tomorrow -- keep us posted on your surgery and recovery!

betsy

[kimber529]

TO ALL THANK YOU SO MUCH FOR LISTENING TO ME AND BEING SO SUPORTIVE, I WISH I COULD GET SUCH SUPORT FROM MY FAMILY OR EVEN A RESPONSE FROM THEM WOULD BE GREAT. WELL TO LET ALL MY SUPPORTERS KNOW I WAS AT U OF M THYROID CANCER CLINIC ON TUES 9/11 AND WAS TOLD THAT MY THYROID HAD TO COME OUT AND AS FAR AS IT BEING CANCER WE WILL NOT KNOW TILL IT IS OUT AND SENT TO PATHOLOGY. THEY ARE TAKING IT OUT DUE TO THE PAIN IT IS CAUSING ME, THE DIFFICULTY BREATHING AND SWALLOWING IT IS CAUSING. I CANT WAIT TILL IT IS OUT IT HURTS SO BAD. SURGERY IS THIS FRIDAY 9/14 I WILL LET YOU ALL KNOW HOW IT GOES. THANKS AGAIN FOR BEING THERE AND LETTING ME VENT AND HOLDING MY HAND AND PUSHING ME ON WITH YOUR SUPPORT.

[msfergy]

I had alot of problems and my 7th trip to the ER I said I am not leaving till we find out what is wrong! I told them the docs cant figure it out after being ill 5months, my BP was 70/40 at the time though and i was admitted withing 15 minute however it was the adrenal gland along with thyroiditis I had tremors and all sorts of wierd things going on!  They said they get alot of people where the docs cant figure it out, now the urine test is not the only test for adrenals the is a blood test that has to be done a certian way for diagnose, at 4am they just started pulling my blood and had it all figured out by the end of the day, just get aggreasive and go to a good ER and let them know. When you have 1 autoimmune problem you likely have another, and these things can trigger so many wierd things in the body I tell ya, I thought I had MS and was going paralized. God be with you and hang in there! Just do what I said and let me know how it turned out please.

[ChitChatNine]

Maybe all these idiot @*@&$&$% Docs *especially ER Docs* should have a TT themselves .. then they will know it is a "biggie" .. My ENT surgeon had  his removed as a child he told me .. had a TT ... that was luck on my side.........

Cheryl

[DarlaLOU]

I am not much help here but feel so badly for you. I hope you can find a Dr (SOON) that can help you out. It seems that a lot of folks with thyroid issues tend to get ignored and treated like they are hypochondriacs and it is just nuts!!
Somehow someone somewhere got it in their head that thyroid issues are "no biggie" and it seems to be a way of thinking for society anymore....... so wrong if you ask me!
Best wishes to you!

Darla

[kimber529]

Hello Betsy, I actually just got back from my doctor who is my family doctor because I cant stand it any more. I have done nothing but cry the last three days because it hurt and the only one that would see me is my family doctor who dont really know a whole lot about the thyroid but **** i think most endocrinologist dont know much about it either. I HURTS SO BAD RIGHT NOW. I CAME HOME AND CALLED U OF M ENDO/SURG CLINIC AND THEY CANT SEE ME FOR TWO WEEKS. I CANT WAIT TWO WEEKS I DONT KNOW WHAT TO DO. WHY IS THERE SO MANY OF US HAVING SUCH PROBLEMS WITH SO CALLED SPECIALIST WHO CAN HELP US. THANKS BETSY. KEEP LET ME KNOW HOW YOUR APPOINTMENT GOES
KIM

[Newbee2000]

Have you tried going to an ENT doctor instead of endocrinologist. ENT might be more helpful w/ the windpipe issues. Good luck!!!  Hang in there, you will find the right doctor!! It's just so frustrating when you're sick and still looking.

[zaksmom]

Kimber - since you're in Michigan.. here's a little info.  I'm having alot of trouble getting the current endo I'm seeing to listen to me.  Story is similar to yours in that I have a multinodular goiter, feel like total C R A P , yet levels are normal so he won't do anything.  He won't even biopsy, says it's fine -- really, then how come I can see my thyroid on the right side just looking in the mirror!???  OK, anyways, I just this week went to see my gyno.  she's suggesting that I go to U of M in Ann Arbor because they have a great, great endocrine center.  See if you can get a referral there.

Hey, maybe we can get our friend KIPLAND on here.  Lori just had her thyroid removed at U of M -- she's been a great person to get info from for me.  Especially with the U of M questions.

betsy

[kimber529]

Thanks for all the encouragement and support that I AM NOT CRAZY. I have been to so many different endocrinologist and I have research so many. I am just tried and REALLY GETTING WORSE TO THE POINT IF I COULD I WOULD SERIOUSLY REMOVE THE DAMN THING MYSELF. I know it is the my problems and why wont anyone listen to me. I have been asking for years to just remove it and I dont get anywhere but more test. Now today the tumors or nodulas are so getting large had last thyroid ultrasound a couple months ago but they feel even bigger since then. I can hardly swallow, I cant hardly breath if I look down for to long of a time, I have a constant need to clear my throat not because something is there but my thyroid is pushing on it my eshopgase and irritating it. Then I was having episoides of where I could feel the nodulas get stuck around my esphogase to where I could pop it out by swallowing or moving my head a little. BUT NOW IT IS HAPPENING AT LEAST 3 TIMES A DAY AND TO MOVE IT I HAVE TO WRAP MY FINGERS AROUNG MY WIND PIPE AND MOVE IT TILL IT IS NO LONGER STUCK AND IT HURTS LIKE HELL. MATTER OF FACT IT HURTS ALL THE TIME JUST TOUCHING MY NECK BRINGS TEARS TO MY EYES **** IT HURTS WHEN NOTHING IS TOUCHING IT. THEN THE PAIN RUNS UP INTO MY JAW, MY EARS DOWN INTO MY CHEST (IT IS NOT A CARDIAC PAIN I KNOW THAT SINCE I HAVE HAD 3 HEART ATTACKS IN THE PAST). I FEEL LIKE I AM AT MY END IF SOMEONE DOES NOT LISTEN TO ME SOON I FEEL LIKE THIS IS GOING TO TAKE ME TO MY END AND I AM TO YOUNG FOR THAT. I ALSO FOUND OUT THAT MY FATHERS GRANDMOTHER DIED BECAUSE OF A THYROID GOITER GOT SO BIG THE IT TRAVELED ALONG THE LYMP. SYSTEM AND DAMAGED HER HEART AND ON  TOP OF THAT IT WAS CANCER. SHE KEPT GOING TO THE DOCTOR BUT THEY WOULD NOT LISTEN TO HER EITHER HER STACKS OF DOCTORS JUST KEPT TELLING HER THE THYROID LEVELS WERE FINE AND TREATING HER FOR DEPRESSION UNTIL ONE DAY SHE ENDED UP IN THE ER FOR A HEART ATTACK AND WHEN THEY TOOK HER TO SURGERY THEY FOUNT THE HUGE GOITER STRECHING FROM HER THYROID WRAPPED AROUND HER AROTA.  I JUST HAVE A REALLY REALLY BAD GUT FEELING THAT IT IS CANCER AND THEY WILL NOT LISTEN AND I REALLY DONT FEEL LIKE I HAVE THE TIME TO SEARCH DOCTORS TILL I FIND THAT ONE THAT WILL LISTEN TO ME. WHY DONT SOMEONE REGULATE THESE DOCTORS. WHAT SUCK IS I HAVE WORKED IN THE HOSPITAL FOR 17 YEARS FROM AND ER/NURSE TECH TO NURSING. I AM IN OAKLAND COUNTY MICHIGAN AND WILL TRAVEL TO ANYWHERE TO SEE A DOCTOR IF HE/SHE CAN TRUELY HELP ME.

[NYNY2020]

I've also been told my by STUPID endocrinologist that many of my symptoms are not thyroid related, BUT they can't find anything else wrong with me!! And I have read other posters on this forum with the same symptoms due to thyroid. The thyroid and endocrine system are VERY complicated, and produce a vast variety of symptoms. I also strongly suggest that you keep searching for a MD who can help you. I know that sounds frustrating, but you have to be strong and have faith that there is a MD out there that will help you!!!!! You might call  hospitals in your area and ask for a referral for a VERY GOOD, experienced, attending physician who mainly treats thyroid! If you can travel to a major medical center or teaching hospital, even better. Good luck!!!!!!

[SuzieQTT]

Your symptoms are so much like mine!  I understand the frustration but I want to impress upon you the importance of not waiting...get a second, third or fourth or even more opinion until you feel comfortable with your treatment.  I went undiagnosed and untreated for so long that my thyroid was the size of "a very large grapefruit or 1/3 of a loaf of bread".  I know weird descriptions but that is what the surgeon said.  I ended up having to have mine removed so that I could eat, breath and sleep again.  I am 3 weeks post op for Total Thyroidectomy and am just now going through the first phase of my Synthroid regulation.  It has not been easy or fun by any means so keep asking questions and keep diggin for answers.

Take Care and good luck
Suzie

[Sc00ter1808]

Sounds like you need an Endocrinologist.  Find one that has specialty in thyoid cases.

Hope to you health!

Cheers,
Scott

[Nicki1433]

It sounds like you need a new doctor.  Plain and simple...find someone who will listen.  Many of us on this board have gone through a number of doctors before we found one to listen and take action.  This is definitely a condition that is really left up to the patient to notice and be insistent upon.  

Good luck!

[DLA]

It would help us interpret if you would put your test results with you labs ranges on them.  Some of the people on here are really good with these numbers and would be able to tell you more what they meant.

Also if you will tell us where you or are near maybe someone can come up with a good endo for you.  Also if you will go to the American Thyroid Associtiation they have a place to look up an endo who specializes in thyroid or a thyroid specialist.

You sound perfectly sane to me.  There are tons of stories just like yours on this forum.  Hang in there and remember that unfortunately they say it takes 6 endos before you find a good one.  Most of us have been there, done that.  So good luck and keep us posted.

Dac