# Living with Hashimotos - the future?



## Rdonnelly (May 2, 2012)

Soon it will probably be two yrs soon since diagnosed with thyroid issues and then narrowed to Hashimotos. I think Andros and reasearch have helped more than any docs/endos!!!

Anyways I guess I am done pretending its an easy road ahead, I am only 33 and cant imagine these up and downs the rest of my life. I would really like to hear some success stories, they may already be here and I just haven't read them. Does Hashimotos typically result in eventual removal of the thyroid gland or can you live your whole life managing it?


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## CA-Lynn (Apr 29, 2010)

Before begin, let me clearly state that all things are relative. I don't mean to belittle those of you with one autoimmune disease. I am just giving you my perspective.

I was diagnosed in 1989 with Hashimoto's. A few years later I was diagnosed with several other autoimmune diseases.

The Hashimoto's, which spilled into Graves on occasion, is the easiest thing to manage. Sure, it goes out of whack every once in a while, but never very far and it's easily hauled back to the zone that feels best for me.

The pills for Hashimoto's are cheap. Of ALL the drugs I have to take for chronic diseases, I have a monthly co-pay of about $500. My insurance pays close to $5,000 a month.

Thyroid disease hasn't stopped me from breathing or walking or being able to get around.....my other diseases do. I haven't had to have any surgery due to thyroid issues. I've had plenty of surgery as a result of the other diseases.

Again, all things are relative. But I think that it does a world of good to really check out the grass on the other side. May not be as green as some people think it is.

I find that thyroid brain fog is nothing compared to brain fog caused by the other diseases. But just like thyroid, get the diseases under control and the brain fog goes away.

So honestly? I'll take thyroid disease any day of the week.


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## Lovlkn (Dec 20, 2009)

Rdonnelly said:


> I am only 33 and cant imagine these up and downs the rest of my life.


If you are having ups and downs being on medication - This is a reason to consider surgical removal.

In my case I had only been diagnosed with Graves and had both TSI and TPO antibodies, the anti thyroid treatment I was on had to be adjusted almost monthly.

Having my thyroid removed was the best decision I have made on my thyroid disease journey.

Do you have TSI antibodies?

Why are your labs unstable?


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## Lovlkn (Dec 20, 2009)

Rather than edit my post above I would like to ask you to post all your lab's in this order. Please list ranges beside the lab result as some labs change ranges.

*Date of draw, TSH , FT-4,FT-3 and what dose you were on.*

In reading your posts it sounds more like you have not found your correct mix of replacement that agrees with your system.

If you do not have TSI antibodies or alot of nodules you should be stabilizing.


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## lainey (Aug 26, 2010)

For me a good management plan with regular monitoring has kept things from getting too far out of control. Over time my levels have shifted, my meds have needed adjusting, but nothing will ever compare to that extended time in my life that I was unmedicated and undiagnosed.

I have always considered the treatment a blessing. Treating the thyroid disease made me better than I was before my diagnosis.

Like CA-Lynn, I have other health issues that work harder to drag me down than thyroid disease does. However, I choose not to dwell on any of this. Thyroid disease has taught me that living life is all about the approach.

I have determined that I must be the kind of person that when the devil hears my feet hit the floor each morning he says, " oh, @#[email protected], she's up again".

You can beat the devil too.


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## Rdonnelly (May 2, 2012)

Yes, I try to keep in mind its very minor compared to what some of you all are going through. I dont have any other diseases that I know of but I do have a full plate providing for a family of 4 by doing very physically and mentally challenging work as an arborist. I work at height in trees, pruning and removing them with an assortment of sharp things.

I did have a honeymoon period once on meds when most days were better than days prior to diagnosis. That ended about 9 months into it and since been trying to up dosage with no luck, lots of side affects, and changed to Armour now with slightly better results. I am pretty sure I am falling in to the "not responding well" to replacement drug category.

Figuring out what lab work I need to get now to figure out why I am not responding well to replacement. Ferritin is on the list. And its reassuring to hear some of you have it managed over the years without removal.

Will try to get a concise list of past labs etc complied for my profile or sig.


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## Andros (Aug 26, 2009)

Rdonnelly said:


> Soon it will probably be two yrs soon since diagnosed with thyroid issues and then narrowed to Hashimotos. I think Andros and reasearch have helped more than any docs/endos!!!
> 
> Anyways I guess I am done pretending its an easy road ahead, I am only 33 and cant imagine these up and downs the rest of my life. I would really like to hear some success stories, they may already be here and I just haven't read them. Does Hashimotos typically result in eventual removal of the thyroid gland or can you live your whole life managing it?


If it were my decision to make, I would go see an ENT and have it OUT and then get on w/life.

There is no earthly reason you have to suffer for the next 20 to 30 years or even longer. This "burning out" stuff is for the birds. You will burn out way before your thyroid does.

Humble opinion!


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## jenny v (May 6, 2012)

I'm in a similar boat--I've had thyroid problems for over 10 years now, but I was in a "honeymoon" period for a few years where I felt almost normal and so I didn't push my doctors or stay on top of my labs as I should have.

Now for the past year and a half my numbers have been jumping up and down at random and I have to change doses every few months to try and stay on top of things, but it's not working so well anymore and I'm tired of it. I think as I get older I'm less tolerant of the side effects I just pushed through before.

My endo has basically given me the option to have my thyroid removed, which I think I'm going to eventually do. If it would just slow down and die off, that would be one thing, but the slowing down and then speeding back up wears a person out and I don't want to deal with that for who knows how many more years. I'm lucky enough to only have Hashi's and not any other auto-immune disease, but it's still exhausting.


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## CA-Lynn (Apr 29, 2010)

I just loved what Lainey wrote:

*"Thyroid disease has taught me that living life is all about the approach. I have determined that I must be the kind of person that when the devil hears my feet hit the floor each morning he says, " oh, @#[email protected], she's up again"."*

And it's true.....either you manage it, or it will manage YOU.

I appreciate how hard it is managing a family, especially with children, not to mention climbing in trees. But then I think, wow, I could manage that if I didn't have Rheumatoid Arthritis.

It's all relative.

What counts is that you work now towards getting a good doctor.....it's like a marriage....it's got to work for the two of you and it must be an egaltarian relationship. Get frequent labs to monitor status. Record the results in a longitudinal fashion [i.e., historical spreadsheet]. And pace yourself if you expend a lot of physical energy.

One thing I've observed over the years: when people stop working and have too much free time on their hands.......well, it's the devil's workshop.


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## surge (Aug 15, 2012)

Just to pipe in as someone who also had a good 9 months before it felt like whatever was broken got more broken, I have to say just from observation of narratives on this board: when thyroid problems are easily controlled, it isn't a bad disorder. Those 9 months taught you that, too, I'm sure. It is a cheap pill, it's only once a day, and it's some lab work on occasion.

Then there are cases, perhaps because of higher antibodies? nodules? who knows that seem near-impossible to stay on top of, and it's down right miserable to know there's no help coming anytime soon (since there are typically 5-6 weeks between labs, medication adjustments, etc.)

My husband has a degenerative heart disorder. I live with the it-could-be-worse reminder, and he does help me push through and keep moving, but that's basically all I have the energy for: forward propulsion. And as much as I love my family and want to focus on what is good in my life, and as much as I'm often able to do just that, it doesn't change the fact that I feel crappy every single day.

I'm sorry you are getting dragged around by this right now. I think you're right to acknowledge your desperation and I hope your doctors know how miserable you've been.

Sorry this is not a success story; I know that's what you're in the market for...but will you settle for general encouragement that doesn't imply that you're being a wimp?


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## CA-Lynn (Apr 29, 2010)

I hope I was clear at the get-go with my first post, in that I wasn't implying that anyone is a wimp. I said it was all relative. You can't compare when you haven't experienced. Sorry that some of you misunderstood.


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## lainey (Aug 26, 2010)

> will you settle for general encouragement that doesn't imply that you're being a wimp?


One should not confuse empathy with sympathy. The first can be empowering, while the second is merely placating.

I think part of the problem is that when people come to internet forums, the conversation does tend to be pretty one sided--the majority of people who post are those having problems--you don't hear from the true "majority"--which is the people who live well with their disease.

Having a busy life and career and family is pretty much a normal situation, and normal people often struggle to get through their day--with or without the added burden of chronic illness. This is not belittling someone for how they feel about struggling with their own burden, merely pointing out that they are not alone. This is where people get caught--that they think they are alone, when if they look a little further they will see that plenty of people manage well under all types of burdens.

Empathy says, "I have been where you are and know you can do it too."
Sympathy says, "awe, poor thing."

Now, most people are looking for a little of both, however in a forum where most people have the same struggles, you are most likely to only get the empathy. Sympathy will not help you.

The point here is that all things being equal, a positive approach in the face of negative circumstances will net you more in the end.

So I suppose, when someone comes on and asks that very question--is it really as miserable as all that I see here--those few of us who are schooled in the disease and have lived with it for a while and have done well (and see some of our own role as to share that with people) have to speak up and say:

"YES, YOU CAN"


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## Rdonnelly (May 2, 2012)

Well, thanks for the new perspectives and positivity, I have dealt with depression plenty before any of this thyroid business was diagnosed so positivity often goes out the window first on the bad days.

And yes, high antibodies found earlier this yr, probably time to check on the little critters again.

In a nutshell I just wanted to know if removal is one day inevitable and if so why wait? I like the T3 in armour, my thoughts seem quicker and sharper than they have been in awhile on the good days. Can kinda hear my pulse in my left ear so thinking i might need to back off a bit and throw in some t4 only with the armour to make sure I am getting enough. Gotta go get some lab work asap, back to BCBS these days so all that comes outta pocket.


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## Texaschick (May 26, 2012)

Hi...I am really sorry you are experiencing difficulties. I am a rookie that went from Hashimotos & Hypo diagnosis in Feb to TT on 8-21-12. We are all different...I can only tell you my experience...and I have to agree with precious Andros 110%! The past few weeks have been the best I have felt in five years. Hang in there! Prayers and thoughts are with you!


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## joplin1975 (Jul 21, 2011)

I don't know if removal is inevitable...I'm not sure anyone can tell you that, as we all have different tolerance thresholds (among other things). But I will echo the others and say surgery was a fabulous thing for me. I haven't felt this good in at least ten years, maybe more. So if it is offered as an option,it might be worthwhile to consider it.


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## Rdonnelly (May 2, 2012)

Texaschick said:


> Hi...I am really sorry you are experiencing difficulties. I am a rookie that went from Hashimotos & Hypo diagnosis in Feb to TT on 8-21-12. We are all different...I can only tell you my experience...and I have to agree with precious Andros 110%! The past few weeks have been the best I have felt in five years. Hang in there! Prayers and thoughts are with you!


Wow, how bad were your labs off when diagnosed? I bet you suffered for yrs before diagnosis. I had energy/mood problems for a yr or so prior and stomach issues got out of control leading to my first lab that found the problem.


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## lainey (Aug 26, 2010)

A vast majority of Hashimoto's patients do not have their thyroid removed.

Sometimes a structural issue such as a tremendously large goiter or suspicious nodule may arise that would necessitate surgery, but that does not happen to very many, relatively.

Antibodies wax and wane over time--but they are not impacted by medication nor do they necessarily disappear if the thyroid is removed. Removal is not considered therapeutic for the antibodies unless the person is thyrotoxic--that is, they possess competing sets of thyroid stimulating and thyroid peroxidase antibodies. Even in that case, it is very difficult to get doctors to suggests ablation of any kind.



> throw in some t4 only with the armour to make sure I am getting enough


If the ratio in Armour is not right for you you can do one of two things: 1.) have a dose compounded at a compounding pharmacy to find a ratio that better meets your needs 2.) take T4 with cytomel and adjust accordingly. The idea of combining T4 with Armour is out there on the internet, yes, but IMHO is not a safe way to dose thyroid conditions--poke around a bit in the threads in this forum and you will find posters who have struggled mightily with over medication using this method.


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## Texaschick (May 26, 2012)

Hi...you are right I did feel bad for years before diagnosis! lol....well I was NEVER sick besides an occasional sore throat or something that I would see my GP for - I would go in to my Gyn yearly and have him do labs ...for past five years felt horrible...but routine thyroid tests came back fine. I was so naive I thought that was all there was to thyroid either yes/no and had NO clue about this thing called Hashimotos. (I had heard of Graves because of Barbara Bush! that was the extent of my thyroid knowledge!) The labs again came back fine in Oct. I went to GP in Feb. I told her EVERY THING she ordered another round plus the antibodies...The ENT, Endo and GP think I had hashis for years (I soooo agree!) My TSH went from normal in Oct to 8.75 in Feb. The TPA was 529....and it increased in June or July to 600 something. I went from walking 6-7 miles a day and going to the gym daily to feeling drained just getting out of bed! I understand what you are going through and my heart and prayers go out to you. Hang in there! This experience has taught me a lot...I have learned more on this site talking and asking tons of questions to these people than all the books I purchased on Hashimotos and thyroid issues! We are all individuals - just listen to your body! Take care and God bless!


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