Hyperthyroid has become Hashimoto's Hypo

[Trish77]

I *was* warned to expect my hyperthyroid to become hypo at some point and it appears to have done that.  The reason the endocrinologist wanted me in right away I guess turns out to be that he wants me on synthroid asap as my hypothryoid is Hashimoto's.  Not uncommon, it happens ... I guess from what I read and what I understand it's just not what you'd want.  Seems it means my body isn't making it's own hormones and the synthroid does that instead?  The endo said to expect that this will be like this the rest of my life and that I have the antibodies in my blood that would have shown a pre-disposition to this.  From what I've been reading, people should take a thyroid test prior to starting treatment to *determine* any predisposition that might be triggered by interferon.  The things you learn AS you go instead of before you go.

From what I've read, having Hashimoto's means it can flip back and forth from time to time between hyper and hypo...that seems like a bit of a ride from the bit I've experienced already.  Anyone have anything to comment on this?

Anyway, I figure there's a chance the endo is wrong and that what starting interferon started, stopping interferon can also stop .. so I'll just have to wait it out like everybody else in this situation and see.

Don't really trust my endo all that much, particularly when he decided that he didn't need to keep monitoring me anymore when I was still in the hyper phase and he agreed to see me at 6 weeks when I suggested that I wanted to know myself how I was doing ongoing.  My treatment doctor isn't too impressed with him and they are working on getting me a second opinion with an endocrinologist in Toronto where my treament centre is.  More driving but better care and I'll take it until I'm done treatment and I see where this is all going.

If anyone has any experience with this .. please share.  I'd be most grateful.  

Trish

[pKinCA]

Hi !

You're probably right about this being a blessing in disguise... The woman who was just diagnosed with Hashimoto's had been extremely tired for about a year or so and her doctor couldn't figure out why... Then she gained 15 lbs. in two months and her doctor decided to check her thyroid... You might have just spared yourself a lot of time and energy!  (And weight gain!!)

So, I'll find out the PCR results on Wednesday... :-)  I'm soooo nervous... I'm trying to keep my mind occupied until then, but it's difficult waiting...  Will let you know as soon as I find out though.  Thanks for the well wishes!!

pK

[DragonTamer]

Well Trish we are keeping  in line it seems.... no sooner did your Hyper flip to Hypo...( as many suggested it/mine would) I found out today so did mine! :(  I have to admit after being found UND and being on that high.... this is a real downer.   My doc said alot of the same things I read here...  might have the anti bodies, might just be the chemo bla bla bla....   He did not "name" anything yet. I see the Endo in Nov I am sure she will do that.   Checking for Graves...antibodies everything they check for.

Nygirl....you seem to be doing well on the synthroid...    but what are the side effects of that??? I know sooner get excited about getting to stop putting this Poison in my body, if/when all stays well... I hear I might have to take something else.... forever???? :(  

I am going with.... it will all turn around when the tx stops....but will have to deal, if the antibodies show in November. Sigh.... :(  

I have absolutely no symptoms....except my TSH went from 0.01   2 weeks ago to 57.97 today! Does anyone know if that Is enormously high?

All other labs were great... Liver functions (ALT) Normal.... everything.

I am not more fatigued than before tx, no weight gain, nothing I can "feel". This baffles my doc a bit.  He said a symptom is also low heart rate that has been good as well.

Trish I rememember you talking about having the shakes??? I actually have been feeling ok except the tx  fatigue and after the shot I am a zombie for 2 days...nothing new there though!

Did everyone with this also gain weight quickly???   Does it matter if you just don't eat!!! I am at my right weight no more no less...what I should be. Should I start dieting NOW!!!!
Fill the fridge with Celery???

I have been trying to stay so bloody positive....this has just been such a let down....but again it could be worse...it always can.... as you said Trish we have to try to count our blessings. I am trying.... just got the news...and came here to my secrete place of safety and comfort and unbiased answers!

Just feeling like I need a shoulder tonight..... or shoulders I know many of you have been right where I am today!   I am here for you too!    

Did you start the Synthroid Trish?  Hope you are feeling better all around!  

Well hope everyone else had a better Monday and better news.


Dragon Tamer

[medicmommy]

P.S....Interestingly enough, most of those patients were blood type "o" as well... ~M
(reference UK Journal of endocrinology, Feb?, 2005)

[medicmommy]

My endo described the txing related thyroiditis like this...Picture a lightbulb being plugged into way too much energy...it will burn hot and way too bright briefly, and then will fail. They thyroid is the same...The interferon jacks up your immune system so high, it makes the thyroid flare...the thyroid cells began to "burn out" and finally becomes exhausted...When tx is over, some thyroids recover enough to maintain proper levels...Some don't...This is only for simple non-Graves, non-Hashimotos thyroiditis...This is why it is important to verify the presence of antibodies...If there are antibodies present, the treatment with medications is generally permanent...If not, the thyroid may be able to return to normal function...
If it makes you feel better, I came across a study that said 88% of patients that develop thyroiditis from interferon induced chemotherapy, have a SVR with their initial treatment...                                                             ~ Melinda

[Isobella]

I am so glad you posted on Hashimoto's.  I'm starting to get the fluctuations in my thryoid, and also have a family history....so the info came at a  great time. :-)

Trish, I hope this resolves for you post-tx.  Take care and enjoy the remainder of the weekend.

Izzy

[Trish77]

Connie, thank you for that.  That's what I really needed to hear, how it is for someone who's had it for awhile.  AND I know you've been a runner while having this and it didn't stop you and that means alot to me!!!  I obviously don't know much about this yet but I'm learning.  

I hope your RA gets better too ... that's a tough situation and hang in there...I know you're being hit pretty hard.  I hope you have a good doctor for the RA ... there are others here who have and are dealing with this, I hope you're getting good support for that.

Take care and thanks for the comments.

Trish

[CMcH]

I've had Hypo Thyroid autoimmune problems for 10yrs or so and just had to take 1 pill a day. Blood tests every 3-6 months to monitor as it goes up and down a little. No big deal but never felt great? Now that I am on TX my Thyroid has gone wild and I expected that. There is a lot of things you just have to accept on TX that you never would have thought of before. Like a rash that never really goes away, mouth sores and brain fog.
One of my greatest fears about doing TX was having more problems after than before.
The Thyroid I can live with I am hoping the RA gets better though.
I hope you find a good doctor that will monitor you closely.
Connie

[Trish77]

Thanks for writing....I'm thinking the thyroid issue may have gone undetected if it was there if not for being on treatment.  The symptoms are the sort of thing I might have just dealt with, you know?  So...perhaps in some ways this is more of a blessing in disguise because perhaps the thyroid would have been out of whack for awhile without me understanding what was happening or even knowing there was anything I could do about these weird little things happening with my body.  On treatment you pay attention to all of that.  Off of treatment, I just suck it up and deal unless it starts interfering in some bigger way and I might have just kept on rolling with it.

Funny story .. glad I could help you impress.  :)  Having said that, you do fine all on your own.  It's a good suggestion to let all the drugs dissipate from my body first to get a true test.  You've had many things to say that have been insightful and helpful.

And best for last...oh my gosh....your big six month test.  Don't mean to make you any more nervous but your markers are looking really good so far .. please let me / us know how you make out!!!!   I'll be thinking of you also, my friend.  :)

Take care.

Trish

[pKinCA]

I've heard the interferon can trigger or hasten any autoimmune disorder than one might have a predisposition toward...  So maybe the Hashimoto's disease might have eventually shown up for you even without tx?

I was told by my gastro that there was a slight chance tx could ruin my thyroid gland -- and thus require lifelong Synthoid.  This is different circumstance though than the autoimmune disorder that you have... But he had forewarned me about thyroid failure...

Curiously, after reading your post in the am, I saw my gastro yesterday then checked in at local hospital for my 6-month post-tx PCR blood draw.  The in-take gal and I chit chatted a bit -- she was just diagnosed with a thyroid disease that had a "Japanese sounding name."  She thought I was brilliant when I said "Hashimoto's disease?" :-) She's 40 and otherwise healthy... no HCV or tx...

Hope you do have a reversal of symptoms though after tx.  I'd give it 6 months to a year before trying to go off medications, as it seems to take that long for the tx meds and sx to go away completely...

Good luck my friend!

pK

[Trish77]

Okay....so from what I'm reading, this is what I take away from it so far.... it's an adjustment to wrap your head around the fact that you have this issue to incorporate into your life and that a magic pill is what you need to keep managed but that it's do-able and you do deal.  I have never had health issues in my life as naive as this will sound, I did not expect to end treatment with more than I started with.  I looked at it that I could tolerate treatment better if I had less when I started.  So it is what it is.

I'm also picking up that the drugs, if the right dosage is determined, keep you relatively normal as if your own thyroid was working properly.  

It's here and I'll deal with it...it could go away and I WILL do that, Melinda...I'd rather know if it's gone or not and a temporary period of weirdness, well.....I'm on tx now, aren't I?  I'd rather understand it for what it IS and not be afraid of it.  It'll get sorted out.  I know it's not the end of the world...it's not what I wanted and even this takes a mental adjustment and it's too soon to have completed that....I need to do more discovery on this.

I wonder how it will impact the running I wanted to get back to when I'm done treatment and probably not at all but I'm still wondering, any idea?

nygirl ....thanks for sharing your experiences...I'm in good company, it seems. :)  The weight gain, that's a big concern.  Well, I'm a woman.  Enough said.  

portann...that helped alot....I caught your inference and that's the part I'm wrestling with...might seem minor to some but thanks for nailing that.

Melinda...thank you for sharing your experiences also.  Thanks for adding in the physical impacts, what I'm thinking hard about is that my diet needs to change and I'll have to understand how this all impacts so understanding the physiology of it becomes very important to me.

It helps to have a whole soup of things where I can then come up with my own recipe.  I don't mean to make it sound like this is the end of the world, it's just something I'm determined to manage successfully once I understand it well enough.  Appreciate you weighing in, thank you.

Trish

[medicmommy]

Hi Lady!
Yep. Been there too...Hashimotos will show antibodies on the tests wheras simple throiditis will not. Be sure your test results show positive for antibodies.
I am currently 10 weeks post txing. 4 weeks ago, my endo took me off the Synthroid (I'd gone hyper to hypo during treatment too) because the Synthroid was actually making me artificially hyperthyroid again...(I must admit, I wasn't too upset about the easy weight loss!) My monthly cycles had gone crazy and it was directly connected to the thyroid swings. Without the Synthroid, I can feel the hypothyroid a bit now, but I can also feel the hormonal fluctuations getting less and less...If you can tolerate it, when you are finished with treatment, talk to your doctor about seeing how you do off the meds...In 2 weeks, I am to go in for a radioactive iodine uptake scan to see how well my thyroid is working. (You have to be off Synthroid for 6 weeks to get correct results from the test.)
Be also aware that hypothyroidism lowers your stomach acid levels and slows mineral (iron and calcium) absorption. I have depleted ferritan (iron stores) because of this. (Thus have iron-deficiency anemia! Grr! -Just when I'd recovered from the hemolytic anemia from txing! Will it NEVER end?!?) LOL. so much for an encouraging word, eh? ((((((((((((((((((((HUGZ))))))))))))))                  ~Melinda

[portann]

Thought Deb would be the one to throw light on this one.

I also really wish it hadn't happened but it's a relief to hear from Deb that controlling it is pretty easy. And it's not dangerous like hyper.

I felt a crazy sense loss when it became clear  I'd have to pop a daily pill for my hypertension. I just didn't believe that things couldn't work themselves out by themselves - a little less soy sauce, a little more exercise. It was like a funeral here when I finally popped the ace inhibitor. And now I just do it everyday and there's no hurdle, no sense of failure - it's routine, easy and has no ramifications for my 'macho' self-image of going it alone without help. If Hashimoto's is in store for me, I will probably go through the same process but in the end, I'll adapt to the pill, even if it's forever.

That said, if there's a way to reverse this for you both, I know you'll discover it because of your tenacity and personal strength.

[nygirl7]

You know I had the same situation - hyper to hypo.  VERY common for interferon induced autoimmune thyroid condition.  Well I've been on Synthroid now for two years and don't expect to go off it, ever.  The only way I'd be able to tell if my thyroid could have recovered (face it it's not going to now) was to go completely off the synthroid for a few months. However - the rapid weight gain aspect of the whole thing is so dreadful I couldn't do it.

I'm sorry Trish that this happened to you.  I actually enjoyed being hyper but hypo.........no, who needs help being MORE tired and gaining MORE weight.

I can tell you though that I haven't been gaining any more weight in quite a while - it is leveled out and my thyroid numbers are spot on.  It's just one pill every day and if that is what I have to do to keep it balanced - so be it.

I wish it didn't happen to you - damn damn damn.

At least - the control of it is pretty easy with only the pill....thank God you do not have to have the thyroid radiated and removed as you would have if you stayed hyper.  Hypo isn't dangerous like hyper so at least that is something good to look at.

God  you didn't already have enough on your plate did you?  Hate this disease!

Deb