hashitoxicosis

[tammy88ptl]

I was recently diagnosed with hasitoxicosis  with the  third opinion! first graves then just hashimotos thyroiditis., now hashitoxicosis like a week ago, dr gave me RAI for toxic hotspot multinodual/goiter December 17th! needless to say I feel worse sometimes ok but I am constantly up and down with my hormones and mood . dr doesn't seem to want to do much., these symptoms I am so confused about, is there any hope, answers help?????

[Tovarisch43]

Don't know if this site still active, hope so...just = fx of hashimoto, via antibody plus confirming ultrasound results...had a prior free t-4 reading off the charts of greater than 11, at which point I was sent for endo consult.  However, endo blew off that test, " must be an error", saying I would have been in hospital or standing in middle,of road naked if my level was that high, in spite of fact I have lost  almost 50 ponds since June, extreme insomnia, and chronic diarrhea, lovely, I know.  He never mentioned possibility of hashtoxicosis and said we would do more labs in six months.  Between initial doc visit and meeting with endo I started taking small dose, .5, of Xanax at night dt reading on elevated t-4 risks and family history of atrial fib.  After endo visit and assurance of
Likely invalid free t-4 findings, I discontinued Xanax....went to bed last night with usually insomnia problems more extreme than usual, felt like my head was gonna explode, finally went to sleep with no meds...woke up this morning following horrible nightmare and experinced what appeared to be major panic attack, hyperventilated for half hour plus, heart racing, unsteady, finally put my head in a bag and took a Xanax, which I have only ever done at night, finally went back to sleep. Having never had a panic attack before, either awake or asleep, got on Internet and lo and behold discovered hashitoxicosis as well as toxic nodules as possibles.  N.b., high free  t-4 test reading was done in mid December, follow up testing showing  more normal range conducted about four weeks later.  
On top of it all, my current providers r in suspense with my insurance provider, not taking it til March 15 th.  So I was sel pay on my last visit,,,,,am not scheduled for return medical visits til June.  Advice, idea, insight?  Would appreciate it!

[bapsmom]

I sm going through something similar. I have Hashimotos then went hyper. I thought I was having a heart attack. Now off synthroid and heading back to hypo blood test wise but still feel incredibly hyper. Had an ultrasound of my thyroid and have a 3cm nodule covering my left lobe. I can't drive because vision is blurry and I get the sensation of motion sickness. Very emotionally draining. I cry at the drop of a hat. I may opt to have a thyroidectomy just to end this roller coaster ride.

[tammy88ptl]

T4, Free
TSH,3rd generation
Cortisol,AM
CMP, w/eGFR
Cortisol, Free 24hr

ACTH..??
               my husband is going to call my dr tomarrow I had some bad hyper days/symptoms right after I was feeling way tired and emotionally drained/DOWN, then I felt great like I haven't felt in months except a few mood swings and other symptoms here and there, I gained some weight which I am concerned about.. now tonight I feel paranoid, panicy ,hopeless really tired and really hungry this cyclye is the worst... I am seriously considering the removal and ablation again and again????

[Barb135]

Are the T4 and T3, Free or Total?  If the lab report doesn't specify, they will be total, which is considered obsolete and of little value; however, they look like they might be Frees.  Please verify and also post the reference ranges, which vary lab to lab and have to come from your own report.

While it's sometimes inconvenient to have to wait between thyroid med and other vitamins/minerals, etc, it's worth it to get a schedule going. Easiest way to do vitamins/minerals is take them either at lunch or bedtime; works just as well.

Talk to your doctor or pharmacist; you may not have to wait the full 2 hours to take the metformin.  I go ahead and take my blood pressure med within a short time of my thyroid med, but I'm on Tirosint, which dissolves/absorbs more quickly.

[tammy88ptl]

I am so sorry you are going through all this I went through and still go through a lot of your symptoms.., I did stop driving for some time actually and my son misses over half his school., your weight is scary.. I think if you were offered the uptake scan I would do it it may make things  worse for a bit which feels like forever honestly!! but its a real good diagnosis to go along with your labs., what disease do you have? it sounds like graves..? my eyes are finally starting to get a TINY bit better day by day depending on the day, hour or moment.. my ears are feeling some what better also depending on what my thyroid feels like doing.. how much magnesium do you take? I was told vitamin B's are real good for energy and mood.. I have yet to get these as all this stuff is not cheap., I take zink also its good for your immune system and is supposed to help with energy also., if you are that hyper you need to do something in my opinion or ya something scary  could happen... and this is miserable as it is
     I started my generic synthroid this morning no food or any other meds for 2 hours after I take it which includes my metformin (I was also diagnosed as type 2 diabetic in the beginning) so.... fun., then no iron or multivitamins,antacids or calcium for four hours after I take this pill grrrr... just more stuff to remember., I can barely keep up with everyday normal life stuff., but am sometimes getting back on track starting to find mail/BILL statements I have been losing over the months which  gave us shut off notices etc.... important stuff to like renters insurance and electricity., THIS disease no matter what form is awful and frustrating to the core but keep pushing, be your own investigator/doctor then tell them don't give up!!!!!!

[leilajax]

PS  Keep in touch!  I hope the medication works wonders for you.  Let me know how it goes.  Good luck!

[leilajax]

Let's see, what do I do for symptoms?.... Well... basically I'm just gripping the seat of my pants and hanging on for dear life.  Depending on how bad the muscle weakness/fatigue is I take an iron supplement (and it does give me energy), but then there are the days when I have too much nervous energy and I'm all over the place.  It is a daily, if not hourly rollercoaster for me and I'd like to punch all of the doctors in the face that don't believe it, but that would just make me more of a mental case to them.  Jerks!  I've also tried magnesium for the muscle tension and that helps very little.  A week ago my right ring and pinky finger went numb for 1/2 a day while I was unable to move my neck.  3 days ago my the muscles along the right side of my back started twitching and they haven't stopped. It is so annoying!  I've lost a ton of weight.  I'm down to 95 lbs, though I eat regularly (even pushing through the nausea) and drink Ensure supplements on top of it.  My skin is very thin and loose.  I look like I'm 80, but I'm only 34.  But the joint pain, brain fog and the blurry double vision is the worst of my symptoms.  It is literally hard to see what I'm typing, as though sort of film is in my eyes.  If I could get that under control I think I could manage through the rest of this sucky mess just fine.  I'm so happy to read that you are still able to drive your kids to and from school.  Keep it up!  That's wonderful!  I had to stop driving because my vision is so blurry, though the eye doctor dilated my eyes and didn't see anything wrong with them.  This stupid disease!!!  Of course I appear crazy to others because they can't SEE anything wrong with me.  Something must jump out at a doctor for them to treat it.  Though, I understand it... I do... I need help.

[tammy88ptl]

ok Saturday febuary 23rd labs

                               T4 0.71
                                TSH 3.95
                             T3 2.2

I was told to take LEVOTHYROXIN generic for Synthroid 25MCG every morning 2 hours before any other meds or food., I start tomarrow. are there any side effects to this???? so just like radiologist said I would not go normal.. just January 30th I was still mildly hyper.. the medical assistant will mail me tomarrow all my labs from the beginning.. and I will call and ask about that test (Tgab) thank you again =)

[Barb135]

Since you don't know what the tests are, I'll take the liberty of explaining them to you.......

Thyroid Peroxidase Antibodies (TPOab) is one of the main indicators of Hashimoto's; your level at 106 is high, as you can see.

Thyroid Stimulating Hormone is the ever present TSH that we talk about; it's a pituitary hormone that tells the thyroid to make more thyroid hormones.  Your level is just about perfect.  Too bad that's not all you need.

Thyroid Stimulating IG is Thyroid Stimulating Immunoglobulins (TSI), which is the definitive test for Graves.....

There's one problem -- while TPOab is a marker for Hashimoto's, it can also be present in small amounts with Graves Disease.  There's another antibody test you should have had, in order to diagnose Hashimoto's and I suggest that you try to get it... That one is Thyroglobulin Antibodies (TGab).  Some people have TPOab, others have TGab, and still others have both.....

So on face value (would be good to get a TGab, too), your antibody tests indicate that you have both Graves Disease and Hashimoto's...... there are different ways to treat them both together, which would include the "block and replace" that I mentioned above; both diseases will ultimately leave you hypo, because your thyroid will either produce way too many hormones (Graves) and have to be ablated/removed or stop producing hormones (Hashimoto's) at some point.  In this case, better sooner than later, because I'd much rather be hypo than hyper........

That leaves us with knowing that you have autoimmune thyroid disease with a normal TSH, but not knowing what your actual thyroid hormone levels (Free T3 and Free T4) are.  There's where hit the brick wall.  Without knowing what your actual thyroid hormone levels are, we can't really say what's going on.

I'm unclear on which tests you get done every month.  If you can get the FT3 and FT4 tests, and post results, with reference ranges (those vary lab to lab and have to come from your own report) and list your symptoms (some cross over between hyper and hypo), we'd be able to give more suggestions on a treatment course.

[tammy88ptl]

hi barb I cant find any of the other labs at the moment but do have the antibodies ok says RESULTED dates... 10/12/2012
             ANTI TPO AB
               THYROID PEROXIDASE AB  H 106.0
                                         Reference range: <35
                                         Unit:  IU/ml
                                                                      10/14/2012
         THROID STIM HORMONE RECP
                                                       1.10
                                                          Reference range: <=1.75

                                                                  10/15/2012
             THYROID STIMULATING IG  
                                                          H 166
                                                             Reference range   <=122
  
By the way I have no idea what any of this means except positive for both antibodies of hasi., graves which in terms Dr calls Hashitoxicosis..... grrrrr..........

[tammy88ptl]

so what do you do for your symptoms?? if you refused diagnosis and or treatment of any kind?  you only see a PCP for your thyroid issues? if I would've known that the uptake scan makes the symptoms worse I would've never done it either! my family can barely stand it as it was now they just look at me like who are you and when will I know who you are?? =(  just got labs done again saterday night., waiting on a call back from my endocranoligists medical assistants as we speak... ugh the waiting. I hope you are feeling ok. I know for me its so frustrating not knowing then a specialist asks how do you feel 2 months after RAI and I say well a rollercoaster and he says the same HMMMM!!

[tammy88ptl]

hi barb thanx again for your reply =) sorry it takes me so long to respond back with my kids and everyday life and this thyroid issue slash disease I am easily distracted. (also just learning how to use a computer and email during this process) I apologize if my words came out that I only have hashimotos., that's what I thought.. but I knew something was wrong when I was looking at my past and what was happening to me at the moment everyday!!!!  I will get the lab results as soon as possible ..,, and the antibodies results which proves the hoshitoxicosis your imput just anyone to talk to about this is amazing I felt CRAZY cuz no really knew what I was talking about or going through., it was all in my head according to others even with proof and even to the doctors medical assistants. I still have not spoken to my PCP since all this several months ago.. she thought I was a hypocondriack sorry not spelt right be back soon have to go pick up child from school.....

[leilajax]

Well, you're not alone!  I went through the same diagnoses stages, but was never given RAI because I refused to do the uptake test, only because I heard that it can make your symptoms worse and as bad as my hyper swing was, at that time, there was no way I was going to volunteer to make it WORSE.  I often wonder whether or not it was the right decision.  This waiting game *****, though.  I, too, have both hyper and hypo symptoms.  One day hyper, the next hypo.  My PCP just said to me "the thyroid doesn't swing that quickly.  It takes months.  I wouldn't even test you in less than 6 week increments."  I said, "well, that's scary because I have the test results to prove that I was in normal thyroid range one day... 5 weeks later very hyper and then 5 days later in toxosis".  She just looked at them and gave me a "hmmm".  According to her 6 week theory, I probably would've... well, I don't want to think about it.  Scary!

[Barb135]

"RAI treatment was given for the diagnosis of graves with toxic multinodul/goiters.."  I thought you said you have Hashimoto's; do you have both Graves and Hashi's?

There's no way you can "go back to normal" after they've given you RAI because that kills the thyroid; you will need replacement medication for the rest of your life to prevent hypothyroidism.

You get which tests done every month?  Please post results, with reference ranges, so we can see what your levels are like. You should be getting Free T3, Free T4 and TSH each time you test.  Also post whatever antibody test results you have.  Be sure to include reference ranges, which vary lab to lab and have to come from your own report.

Yes, one can have anxiety when hypo.

[tammy88ptl]

oh I get those tests atleast once a month or when I feel the need, the RAI treatment was given for the diagnosis of graves with toxic multinodul/goiters.... dr thinks I will just go back to normal for a while, but doesn't know how long or if at all. thanx again for your replys sometimes I think im crazy just when I found out I wasn't.. =)

[tammy88ptl]

thanku for your reply., what levels are you looking for the 3 Ts or the antibodies??? my husband called the Dr today and got my 24 hr urine test sent over to lab closest to me... and some nausea meds.., as far as the dizziness/lightheadness dr has no clue. I wont talk to them right now. how does some one have sooo much anxiety if hypo.???

[Barb135]

Hashitoxicosis is sometimes treated with a method called block and replace, in which anti-thyroid meds are given to stop production of hormones, then the hormones are replaced via medications.

RAI actually kills the thyroid, so it stops making hormones.  Of course, it doesn't really matter, because Hashimoto's will eventually make it stop producing hormones, also.

Your symptoms definitely sound hypo. Difficulty sleeping, anxiety, depression, etc are all symptoms that can be present with either hyper or hypo.  I had them all when I was very hypo.

Most doctors will not run the 24 hr urine test for adrenals and there are those that say the 24 hr saliva test is much better; most doctors don't do that either.

Please post whatever thyroid labs you have, so we can see what your levels are like.  Be sure to include reference ranges, as those vary lab to lab and have to come from your own report.

[tammy88ptl]

what was the treatment I should've had??  my endo says he is positive I will have a normal functioning thyroid just does not know when or how long it will last till hashi takes over to destroy my thyroid gland., I am supposed  to have a standing lab order so I can go get labs when I feel I need them or at least once a month...  im starting to feel more tired not so hyper but awake late at night, one moment feel good the next im asking myself am I depressed cuz so tired, but if I am just hitting hypo why the anxiety???? I just talked to them about my adrenals., I think they are more confused than me half the time but make me out to be the confused crazy one... I basiccly had to push them to listen that I have been having symptoms of both..... every minute, hour or day is different, who am I gonna be next? my husband and 4 children are suffering which makes me more frustrated which causes more stress on me which effects the whole family.... I just want them to take care of me and answer my questions without shoving me out the door while putting me in medical debt.... oh well I will just have to have faith that god will guide my way I am only 30 but want to be balanced desperately!!!!!!!!!!!!!!!!! I do get all 3 tests but now im pushing for the 24 hour urine test for my adrenal glands......,

[Barb135]

Hashitoxicosis is a hyper phase of Hashimoto's Thyroiditis.  While Hashi's is most often associated with being hypothyroid, it's often characterized by periods of hyperthyroidism in the early stages.

I'm surprised your doctor gave you RAI, at this point, since that "kills" the thyroid, so it can no longer produce hormones.

You need to have thyroid hormones tested to determine whether or not the RAI has caused you to go hypothyroid. If so, you will need to start on replacement medication.

The tests you need are TSH, Free T3 and Free T4.