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473850 tn?1208829306

I am in need of advice

I am going to the Mayo Clinic this week actually on Wednesday, I am so scared that I will get up there and they will say sorry but this is all in your head and you need to exercise 5 days a week for at least 60 minutes.  Okay so my head thinks yes you need to do this but my body says I am exhausted.  I have the developments of Hashimoto's Thyroidistis.  This will be my third attempt to try to see if there is something that can be done to help me regain engery, help my concentration, fluid retention, the list goes on and on as you all know.  What I am in need of is some early prep, what quesitons to ask ect.  Thanks for your help.
19 Responses
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213044 tn?1236527460
As I said, you may have a positive experience there. I wanted to go there badly. I have had relatives receive wonderful care there. But not in the Endo department.

Iowa City has a teaching hospital attached to the university. It is also the state hospital for the uninsured. It is also large. You can have an exam and if the doctor decides to give you a CT scan or something, you get it the same day. No waiting.

They have two large clinics, one mainly for cancer patients, the other for the lucky ones. They have the same miserable six-twelve week waiting list for appointments.

I got treated there. It wasn't a huge puzzle, and I'm sure Mayo could have figured it out. Six vials of blood and five pages of tests and the doctor knew exactly what was going on. A week after my initial appointment I was on meds.

I have a journal that goes into all the gory details. My big mistake at that time was not calling them more frequently after treatment started.

It's too far for me to drive, though.
I wish you good luck at Mayo.
Helpful - 0
458072 tn?1291415186
Squirt, I had to start prozac last week, and I also hated to,because I believe it is a bandaid. I understand how you feel completely. The dr told me, that I had so much going on, and I was not functioning and had no life right now. She said if a little pill, will help you with that I would take it, if it were me. She said you can get off  of it later. I am so desperate for any kind of relief at this point, that I am taking it, in spite of my initial trepidition.

If you want, go read some of my past posts about that.

Take care......Peggy
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473850 tn?1208829306
hello to all, thanks for the strong support I couldn't go on without you, things are even getting tough here at home which saddens me very deeply, I feel as though I am spinning out of control.  I did contact my family physician today, started on 150 mg Wellbutrin XL and in 7 days am to go to 300 mg, I cried like a little baby when I took my first dose today.  I just hate this as I know in my heart that this isn't depression.  I have to be honest percysmom, the doctor in Mayo was very nice, however he might have given me 15 minutes, drove four hours and paid the hotel cost and now waiting for my bill, course we got it the other day before insurance $750, unbelieveable, I did call up there today and asked for my test results as they were not sent with the progress notes.  AR-10 can I ask which endo in Des Moines?  I have thought of Ames, it is 30 minutes away.  Scratch that.  Iowa City about two hours for me.  Will ponder that. I know that Hashi's is hard to diagnose but what I don't understand most is I have symptoms, yes some related to depression but not all and no one seems to be addressing them, I have been told now by two specialist, yes antibodies are high however there is nothing we can do until your thyroid shows dysfunction and you shouldn't be experiencing any symptoms just because antibodies are high.  I beg to differ, anyway off of my soap box.  Take care and thank you very much for your support and advocating for me.
Helpful - 0
Avatar universal
Hi AR,

Thanks for the honest advice.  My insurance covers Mayo 100%, so I will only be out of pocket gas money (ouch!) and hotel.  I will give it a try but I will keep looking for answers.  Iowa City?  Do they have a good endo department?  What treatment plan did they put you on?  I will look into them for sure as that is a close drive too.

I did find a very nice doctor at Northwestern, here in Chicago but so far his course of treatment (changed me to Armour, bumped up dose to 2 grains) has not been effective.  I have never had an ultrasound either and simply don't understand how so many people can get such marginal treatment for this disease.

Hyperthyroid is very dangerous so I hope you are getting treatment.  If not, I can recommend my doctor, he helped my friend through her hyperthyroidism and she is all better.  I just hope he can help me with my hashi's too.

Good luck and THANK you so much for writing back.  It is so appreciated.
Helpful - 0
213044 tn?1236527460
I spent two months trying to get into Mayo at Rochester. I called and called and called. My GP wrote two letters and sent them my records.

They sent me a letter telling me there was nothing they could do for me that had not already been done. They said they were booked through the end of the year, were taking no new patients, and they would not see me so stop bothering them.

This was in July of 2006. What irritates me the most about that is the fact that I was EXTREMELY ill, and other than regular bloodwork, NOTHING had been done for me at that point. Not even an ultrasound. I was extremely hyper, to the point of being quite ill, was on no medication, had three antibodies that were high, and a history that hinted I had Hashimoto's and Grave's at the same time. I had been taking Levothyroxine for two years and suddenly I went completely hyper and stayed there.

My GP stressed the need for immediate care, and the fact that I was beyond his help.
But there was nothing they could do for me.

It was a lie, a flat out lie to look at my records and say there was nothing they could do for me.

squirt 112 is the second member from this board that has gone to Rochester in the last year and given the same treatment squirt got.

When she was trying to figure out what was going on before going to Mayo, I posted a question on another thyroid board to try to get some information for her. The first reply I got was from a moderator who said that a few members had been to Rochester with very unsatisfactory results.

Me, I ended up at Iowa city out of desperation and received a diagnosis and treatment immediately. The treatment did not work in the long run, but at least I walked away with a diagnosis and a plan.

I have since switched to an Endo in Des Moines, and frankly I am getting mediocre care there. I am getting treatment, but I have had to argue with the Endo every step of the way. If Iowa City wasn't so far away, I would still be going there.

I really, really, do not want to fill you with doubt and regret, percysmom, but if I were you I would not expect too much from your appointment. Mayo MAY be able to help you, but their worldwide reputation for excellence does not apply to their Endocrinology department at Rochester.

I also had dismal luck in Ames, if anyone is thinking that may be an option.

Again, I know this is not what you want to hear, and you may have a positive experience there. The truth is they are not the wizards one thinks of when the word Mayo is mentioned.
Helpful - 0
Avatar universal
Wait, Squirt....I am planning to go to Mayo on July 9 for basically your same exact issues.  In a nutshell, undiagnosed hypo for 5 years in my early 20's.  Told I was "fat and lazy" and handed anti-depressants for years (went from 120 lbs to 150 in 4 months but I was also "too young" to be hypo too, lol!).  Finally diagnosed and lost all weight (within 2-3 weeks), got happy and healthy, where I stayed for a couple years.  Went on birth control pill, spiraled out of control, fought back when no one could get me regulated and was regulated for 5 years.  Recently went down again and now unable to regulate, nothing is working.  I have gained 15 pounds since JANUARY (I gained it in about 2 months).  TSH was showing me low, so THREE endo's LOWERED my meds, which sent me even further down.  Started on 2 grains of Armour from 1 1/4 grains three weeks ago today with very, very little change (ANYONE, tell me am I being too impatient here??!). BTW, during the time I gained weight, I was working out 6 days a week, hard, and eating well under 1000 calories, so take it from me, it is NOT about exercise and food which conventional doctors are so retarded and short sighted regarding.
While I like my current doctor and he actually LISTENED and looked at my T3 and T4 (duh) and not just my TSH, I was still planning to go to Mayo to get this figured out.  Is it really that bad up there?  Has anyone else ever had luck there?  Should I not waste my time and money heading up there?
Helpful - 0
Avatar universal
some doctors really stink i too saw a specialist that basically told me i was wasting his time i went home feeling awful we know we are not right and i hate doctors who think there god and know us better than we know ourselves. so i would suggest you go see another doctor because one will take you seriously.  dont be too despondant eventually someone will help you and it might take a while but eventually you will feel better i wish you luck
jackie
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473850 tn?1208829306
ps, the doctor told me on paper that I cannot have symptoms from antibodies being high, okay?  Is this true?
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473850 tn?1208829306
thank you so much very much for you nice comments, I am awaiting the results of the oximetry test and I almost have myself conviced to see a nutritionist, and possibly talk to my doctor about an anti-depressant, I hate the thought but I am not sure at this point what to do.  You are so right AR-10 I should have gone to Iowa City, is there anyone that you recommend?  Much shorter drive then Rochester, I feel so stupid for driving up that far and getting the same result that I got from Des Moines.
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215021 tn?1224882457
Hi there, my heart went out to you reading post and then lookinghtrough the previous ones.  I sooooo know that feeling of wanting to just plain break down and SOB when you go for help and are told basically, that it is in your mind.  I have been on this trail for  4 years nearly now.  I went from being a fit and active woman who worked out, ran regularly, ate healthily and generally enjoyed life to someone that I don't recognise.  I ache most of the time, I get terrific migraine headaches, I have had problems with severe heart palpitations and insomnia. Ended up on beta blockers and valium! Blah blah............ And yes - I have broken down in the doctors office - then been told I needed anti depressants.  I refused them and so therefore I have been branded difficult!  'I'm NOT depressed' I wanted to scream - 'I am just so sick and tired of being sick and tired!!!!
Anyway, what I wanted to say was, that you are not alone and it is not in your mind!  Somehting is causing you these problems and you are doing so well just trying to get an answer.  Keep going, keep fighting if you can.  
Do go and see the nutriotionist, one of the things I have discovered that has helped me a bit is that I have intolerance to wheat/gluten.  I am not quite full blown coeliac disease but certainly have a poor intolerance.  I avoid it now and it really helps with the joint and muscle aches.  Have you had food allergy testing? Maybe worth a shot?
Good luck and just know someone out here knows how you feel and the frustrating place you are in right now.
J x
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213044 tn?1236527460
County is not the right word. I meant country, like your own island, or maybe Uganda.  
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213044 tn?1236527460
Mayo Clinic is a joke when it comes to Endocrinology unless you own a county or something.

Go to Iowa City.
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473850 tn?1208829306
well got the report back today by mail, going to get the final labs as the doctor didn't send that but he suggestion that I diet and exercise, recommended a nutritionist and suggested that I speak with my primary physician regarding depression.  I want to cry.  I followed through with the oximetry test, haven't received the results of this yet.  
Helpful - 0
473850 tn?1208829306
thank you all for you nice advice.  Went to the Mayo, saw a nice young doctor and I think he took my symptoms serious, however he told me that the antibodies isn't causing me to have these symptoms and need to rule out Sleep Apnea first, I am going to follow through with this test, I think he is plain nuts myself but okay get it ruled out or if is the issue I can move on.  I just don't see how the symptoms I am having can be related.  I did blood work again and I felt very sick the day I did this, so prayerful my blood will show something.  He was empthetic and listened but he kept saying he is a thyroid specialist and what he can see my labs are normal from previous tests and that I have an enlarged thyroid but nothing to be concerned about.  I felt like crying when I left the hospital, I was more hopeful then what he left me with, of coure he went into are you sure you are not depressed, I held back from lashing out, so my husband did it for me :)  And he talked to me about seeing a nutritionist as he agreed I have an issue with water retention and a 20 pound weight change from two years ago, told him I eat right and exercise I don't need to hear the speech.  Any suggestions advice, I am struggling!!!  Will let you all know the outcome of the tests once I receive the lab work results.  
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Avatar universal
I know exactly what you are going through! I've been trying to manage Hashimoto's for the past few months. I'm still trying to figure out how to lose weight. I even had a doctor tell me that I ate waaaay too much (I eat 1500 cals a day), I needed to stop working out, and that lifting weights will make me fat. Doctors are used to seeing people who are overweight because they are in denial about their diet and exercise. Just try to keep your sanity and be firm... you know your body better than any doctor. If the doctor doesn't believe you, find one that will because you can't live your life not feeling well.
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398849 tn?1210135972
There was another lady from this site who recently when to the Mayo clinic hopefully you can find her posting and contact her for some advise before you go? I am sorry I can remember her name but you maybe able to do a search. bestest
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473850 tn?1208829306
Hello, yes I will have all of my old labs and I have the medical records, the last doctor was very nice in getting me all of this.  I am not on medication and have not had an ultra sound.  I see them bright and early at 7:00 a.m. Central time.  Not sure what to expect but thank you so much for the advice AR-10 and moojy thank you for the kind words.  I am about a wreck, I just need to pray and hope for the best.
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517152 tn?1212368531
A few years ago I went to the Mayo Clinic for another matter that my local doctors could not diagnose.  I was beginning to think maybe I was going nuts.  

At Mayo they were more thorough and precise than any other place I had been.   They listened to me and did not give up until they found a credible answer.  I left there with a much better feeling than I'd had in a long time.

I can't give you any questions to ask, but I can try to calm your fears so you go in knowing your going to be with some of the best around.

Good luck to you.  I will look for your return here.

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213044 tn?1236527460
Will they have a copy of your medical records?

Ask them to run all the regular tests and all the antibody tests again. Ask them to do an ultrasound if you haven't had one.

If they start telling you your tests are normal and there's nothing they can do, ask them what your TSH is. Remind them the new upper range is 3.0. Ask them what the target range is for a patient on thyroid medication.

Ask them to look at your Free T4 and Free T3 tests again, and see if there is room to go up with those hormones. Perhaps a trial dose of meds...

Good luck with the trip. Let us know what you find out.
Helpful - 0
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