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So what's holding you back?

I don't ask to be a jerk, I'm being serious. I know Hashi's sucks. I know how it impacts quality of life. I know how it makes hard things that much harder. And I know how frustrating it is to compare yourself to people without these types of conditions and think how much easier they have it.

But, when the rubber meets the road, it's not a death sentence. Therefore, you are making the choice to let it control your life. If you want to further your education, do it. If you want to finish a project, do it. Don't make Hashi's the project or the focus of your life. Power through it. Make the decision not to let the disese control you.

We often have posters on this site searching for new doctors who are open to a variety of treatment options to help patients feel their best (it can be a challenge to find one!). We like for posters to share their doc recommendations via private message versus on the site, but there are several sites online to help with your search. I found my integrative doc through the Thyroid Change site and it has a page that lists doctors who are open to the right tests and thyroid medications. I'm sharing a link to it in case anyone else needs help in their search.

 

http://www.thyroidch...or-list-us.html

Normally, I don't give much credence to Yahoo articles. But I do like this one about getting a second opinion.

 

http://news.yahoo.co...-230833266.html

 

 

Two things that caught my attention:

 

People should not worry about upsetting their doctors by getting a second opinion. It happens so frequently that doctors are used to it, Mishori said. "If the doctor's offended, you probably don't want to go to that doctor," Mishori said. "This is about you," she said.

 

And...

 

Patients who seek a second opinion should let their first doctors know, Mishori said, and patients will usually need the initial medical tests for the second opinion. In some cases, the two doctors will talk to each other about the case. "It's a learning opportunity for everybody," Mishori said. "It shouldn't be an adversarial process."

Same goes for RAI and TT it's all a big bandaid for what's really causing graves doesn't take it away so what's the point the only thing that i can even come up with between 2008 when my levels were normal to 2011 is a flu vaccine I was forced on by my boss and because it causes antibodies in your system is this possibly antibodies that could trigger graves I can't think of any infection or virus that I had during that time frame:/ other than the flu vaccine anyone wondering what the cause is ??

 

If your doctor is saying these other "solutions" are just a band-aid, what does he/she propose for a more permanent solution?

 

Let's say for a moment, just for the sake of argument, that your guess is correct about the flu vaccine triggering your thyroid antibodies. What could you do with that information? What's done is done, and you can't turn back that clock and undo the vaccination. Look forward, not backward. Since you can't impact what's happened in the past, what can you impact in the future?

You're right: surgery is a very personal decision, and I'm sorry to hear that you don't believe you fully considered all aspects of it and now you regret your decision. 

 

That said, I am going to lay out some tough-love here in the spirit of helping you move forward. I think a big part of what's preventing you from feeling better is your attitude/outlook. Please hear me out. What I see in your posts is an overwhelming amount of negativity and a lack of productive thinking and problem solving. You appear to be getting frustrated and giving up, blaming doctors, blaming us, etc.  I believe you would be better served by taking a step back and asking "What can I do, what can I say, how can I have a different conversation with my doctor, or how can I switch to a new doctor in order to start feeling better?"  The current approach is clearly not working for you.

 

Your labs are showing definite room for improvement with non-thyroid levels. I know you said your current doctor said he/she didn't want to increase your thyroid meds, but what about those other things? Ferritin? Vitamin D? Those need to be addressed, too. You're going to continue to feel terrible until those things are addressed.

 

How persistent have you been with this doctor? Have you truly been assertive with your needs, or do you simply take no for an answer? If you've truly been persistent and assertive, well, then it's time to look for a new doctor, in my opinion. Your care is up to YOU. Own it. Take charge. Get what you need. Don't give up.

 

Now, I'm not kidding myself. I know this message will not be received well. But I do hope you at least take a moment to consider what I'm saying, because I truly do want you to feel better.

I think you are getting confused with the natural vs synthetic thing.

First, when you had your thyroid ablated, you found yourself in a situation where you must provide your body with replacement hormones - replacing, that is, what your thyroid would naturally produce. This is not optional, as your body uses thyroid hormones for basic metabolism. Not taking the medication will lead to serious health issues. So, that said, you cannot get any kind of medication or supplement that has replacement thyroid hormones over the counter.

I hate the term natural vs synthetic because it misleads people. All thyroid medication is synthetic. It's highly processed and highly regulated. When people talk about "natural" medication, they are referring to dessicated medication. Meaning, it comes from natural sources (porcine). But, again, it requires a prescription, monitoring with blood tests, medical supervision, and it is synthetic. Some people say it is superior because it has two types of thyroid hormone, which many people who have ablated their thyroids need.

Isn't this fun?

 

Certainly it needs to change.

 

HOW?  HOW can we change the way medical professionals treat Thyroid patients?

 

Hearing the stories day after day about how doctors who are SUPPOSE to KNOW - simply have no clue.

 

I am off my soapbox.

Thanks for reading.

Interesting. I suggest asking your doctor for a thyroid ultrasound. If your thyroid is enlarged and/or has a nodule, it can make your neck feel "crowded" and could make you feel the urge to cough or clear your throat.

Just happen to see this on the Thyca site. Published in the July 2014 issue of Clinical Endocrinology: (sse about 1/4th of the way down the page) http://www.thyroiduk....html#new-paper or the online abstract: http://onlinelibrary.wiley.com/doi/10.1111/cen.12527/abstract

 

"What it proves is that there is no such thing as a TSH range that is suitable for everyone, and that the range is different according to the effect of independent influences such as age, body mass, size of working thyroid volume and whether someone is on T4 or not.

 

The T4 therapy range is very much lower than the "normal" untreated and sits around the 1 or lower mark. The 3-4 upper level that works for the normal person is not satisfactory and can indicate undertreatment.

 

Also we're finding that people with no thyroid working at all cannot easily regain normal FT3 with T4 alone and that TSH suppression often has to happen, and in some people no amount of T4 will regain normal FT3 levels. Recent reviews by the gurus now admit that some people cannot handle T4 only and regain health. Just thought you'd like to know that the avalanche is beginning."

It can be a possible reason.  I call it the "entire body inflammatory response!"  And that is no joke!  Sending hugs your way.

Hi, I'm going to answer you in what might seem like a strange way.

 

A diagnosis of hypothyroidism can mean so many different things for different people over time.  Instead of going in to all of what you can read about, I'm going to tell you some nice things about it.

 

The up-side of a hypothyroid diagnosis:

 

1.  You finally understand why you've been so emotional or worrisome when perhaps you didn't used to be and that helps you understand wow, that' s a symptom?  Ok, I'm going to work to shut that off then.  Meanwhile, when you get the right thyroid hormone all worked out, right dosage, right type, etc., finally, your emotions can start levelizing, normalizing, and you can begin to feel normal (when you're on the right amount of the right thyroid hormone for you.)

 

2.  You finally understand why the pounds were so hard to move, if they were for you.  Again, for some, getting the right dosage of the right thing that works for your body (thyroid hormone- synthetic or natural (dessicated) may mean that finally, maybe the pounds will move, or at least you understand why they didn't and you can work to come up with ways to try and move them.

 

3.  You finally understand why you're always fatigued.  When you finally get on the right dosage of the right type of thyroid hormone for you, life becomes better, and you're not always so fatigued.

 

4.  For some, they actually get to a place where thyroid hormone is no longer needed -- (I know two of these people personally -- one is a woman with Hashimoto's and another is a women with hyperthyroid.  I see them about 1x per week so this is for real).  (I am not encouraging anyone to stop taking thyroid hormones -- for people who need it -- it is VERY necessary).  But just so you know, not everyone has to be on them forever.

 

5.  Some people find that there are triggers for their Hashimoto's (for those who have it).  Some people successfully discover what ticks off their thyroid and that stopping those things calms it down.  That's what I personally am hoping for in time -- but it's a lot of work, so one step at a time.

 

6.  Some people learn that our bodies demand rest...  So I wasn't designed to run the Boston Marathon - -that's okay -- I'm happy about the exercise that's good for me personally.

 

I hope that's some encouraging help for you while you wait on your journey.  As someone else mentioned recently, MANY people are doing VERY well and you don't find them here -- they're off enjoying life & living it... 

There's a lot of hope & healing on this journey.

When I first found out I had Hashimoto's..I had a TSH of 16 and a TPO of 4,900+ .. (that number is correct).. and an expensive trip to the ER

 

I can tell you that I 'absolutely believed' that i could turn my thyroid back on.. I read & studied everything I could get my hands on so that I wouldn't 'have to' take pills the rest of my life.. I also had an endo who actually encouraged me to go off my meds to 'see what my baseline was' & to study my progress.. once I was off.. she wouldn't see me until I reached a TSH of 10 again..

 

Yes, i was in complete denial & believed whole-heartedly I was going to be "cured".. 

 

I believed the hype online..I believed my doctor who was using me as a guinea pig study 

 

I completely changed my diet and was only on 25mcg of levothyroxine.. I dedicated a year to be strict and get back what i thought I'd lost.. I obeyed, I followed..

 

Yes, i did bring down my TSH.. and my TPO went from that number to 24..  & thought I'd kicked its butt..

 

AND THEN THE CRASH CAME

 

Last year in October.. out of the "blue" my numbers skyrocketed once again.. but, in saying that.. they actually were never really truly "optimal".. they fluctuated every test and always on the side of hypo.. and my endo convinced me I was "cured'..

 

I WASN'T CURED!!... I should've never gone off my meds.. E.V.E.R.. 

 

I regret that I 'believed' the BS, I regret that an incompetent doctor used me for her study

 

I had to wait to feel like crap, heart palps, shortness of breath, hair falling out, swollen lymph nodes and such a huge decrease dramatic weight loss (i now only weigh 112 lbs)..I can't believe I did that to myself.. today, I'm still trying to regroup..

 

I am getting better but the road to recovery is long and tedious & a lot harder.. I did a lot of damage to my precious thyroid

 

Trust me when I tell you, I bought the same thing 'hook, line & sinker'.. and it nearly killed me.. 

 

I'm worse off than when my thyroid was at 16 and my TPO was 4900+.. don't do that to yourself.. 

 

If you're here for people opinions then great.. but, if you can learn from someone's actual experience.. that would be the key.. 

 

Think about it.. and I hope you make the decision to stay on meds.. your labs say you definitely need them..

 

and above all.. don't be a guinea pig or a slave to someone who tells you you can be cured from this.. 

 

You can't..

 It's my passion to help others - which is why I stay.

 

I'm here - because I had someone to help me understand my thyroid illness and also help me through the process to have my thyroid removed.  Then she was there to help me dial in my replacement hormone.

 

I understand - because I have been there - done that and  therefore I feel I can give clear and unbiased advice to people who are too sick or anxious to figure things out alone.  I have had the same struggles than many posters have with their doctors - and feel sharing my experiences can give them hope that someday they too can find some relief.

 

That's why I stay - 

Thyroid issues are really, really good at teaching patience.

I think it really depends on how well you are medicated post-surgery.

 

I was severely under medicated after surgery (TSH of 121) and gained 27 pounds. Once my meds were in a good place, I lost all of it and am back to normal. 

 

You need to find someone who will not focus on TSH only, but who will test for free t4 and free t3 AND who is open to using t3 meds, if needed. If you find that person, you shouldn't have any problems. 

I love reading this stuff.  You guys have been a wealth of information for me.  I just started with a new Endo because my last one didn't really listen.  I asked that my next blood work include TSH, FT4 and FT3 and she agreed.  Right now I am on the roller coaster of energy.  It makes it tough to get through work on a daily basis.  I have more down days than good days.

 

I do believe having my thyroid removed was the best thing and the pathology report confirmed that.  It wasn't cancer but it was a mess.  

 

blackngold I wish the best and I hope it gets better.  I hope you don't give up. 

By Iron IV, do you mean intravenous iron?  In the meantime, have you started an iron supplement just to get things going? What are your next steps? Sometimes, when insurance denies an initial request, if the patient and doctor really push for it, it will be approved the second or third time. 

 

You WILL get through this, blackngold, and you WILL get better. Please believe that!

That's all. 

 

When I first got sick and started down the road with Dr. Google, I found precious little that was helpful (thyroid symptoms searched without the word "thyroid" in them return some really scary options).

 

When I realized I was hypo, I still found precious little even though there were some boards or loose threads here and there (comments and half-hearted boards, discussions that lacked what I thought was depth, etc), Places where there didn't seem to be a regular group of participants. 

 

Glad I found this forum. The contrasting opinions, collective (hard earned) knowledge. Well, I appreciate the professionalism and dedication of our regular posters and mods.

 

I'll probably keep my Pinocchio avatar, not sure I will ever feel that I am without strings anymore, but I have to say I feel more like a real boy than I have in a long time and appreciate you letting me visit and chat and learn. 

 

So thank you.

 

This forum was pretty useful to me as I was prepping for surgery so I thought I would share my story and let people know that it isn't really that bad!

 

Back in Oct. my primary care Dr. felt what he thought was an enlargement on the left side of my thyroid (he checks often due to a family history of thyroid issues.  6 of 10 grandchildren on 1 side of the family have some sort of issue) and ordered an ultrasound.  He is pretty cautious so I figured it was just a precaution but then I got the "The Dr. would like to discuss your test" phone call.  Uh oh! 

I had 8 nodules, all fairly small (2mm-ish) except for 1 that was 1.3cm.  He sent me to an endo who surprised me with a ultrasound guided biopsy after the apt with him.  Apparently, 1cm is the threshold that they use, anything bigger gets a biopsy.  I'll say that of the whole process, that was probably the worst thing, I didn't really enjoy the biopsy!  The initial results came back atypical (some odd cells, but they can't call it cancer) so it was sent out for genetic testing.  That came back with a 40% chance that it was cancer so off to meet the surgeon I went. (side note, they sent me to a general surgeon who I'm sure was capable but I wanted someone who specializes in this.  I found a Dr. locally that is an ENT surgeon and has done thousands of these surgeries)

Met with the surgeon and made the decision to do a total thyroidectomy since the nodules on the other side would have to be monitored forever and I wanted to avoid being cut open again if possible!

 

Surgery day I was pretty nervous, I'm 42 and have never had ANY medical procedure, I was really worried about going under and had read too many horror books about people being awake during surgery, etc.  Got all wired up with the IV, met with the surgeon and anesthesiologist (who helped put me at ease a bit), they gave me a shot of happy juice and off I went.  Went into the OR at 7:30 and woke up in recovery at 9:30.  1st reaction was more of a sore throat from the tube than pain from the incision so they gave me some pain meds and some anti-nausea meds too.  Spent 1 night in the hospital, the PA came around 7:00 the next morning to remove the drain, that woke me up a bit!  It stings but its over pretty quick.  I took 1 week off work but was pretty mobile the day after I got home, driving within 2 days.  Pain was minimal, never took the hydrocodone they gave me for home.  I did sleep in a chair the 1st couple nights to keep the neck elevated and help with swelling.

2 week post op follow up, the bumped me from 175mcg levothyroxine to 200 (I'm not particularly small) and took the steristrips off.  The incision had some swelling (and even now has some texture to it) but they said that its all normal and that my incision was pretty small for a TT.  I was back working out after 2 weeks.  I was on the very low end of normal for my pre-op numbers so being on the meds I actually feel really good.  Have lots of energy, etc!  Blood work every 6 weeks for a little while to monitor things.

 

The final pathology was interesting.  The 1.3cm nodule came back clear but one of the 2mm ones on the other side did show cancer so it was good that we decided to take the whole thing!  It was small enough and lymph nodes were clear so most likely no RAI will be needed but I meet with the endo next week to discuss.

 

Sorry for being so long, it helped to process the whole thing by writing it out.  All in all, the process was not that bad, if it's the worst thing that ever happens to me I think I'm still doing pretty well!  Feel free to ask me any questions, its all still pretty fresh in my mind.  

Good morning. 

 

One small stroke of progress over here:   Today we have  a plumber coming to the house to fix the kitchen sink.   Our "normal"  is that I would stay at home and deal with these folks ......she stays back in the bedroom.

 

So this morning,  she asks why I'm still here (in the house),  and I said that the plumber is on his way.   She actually looks exasperated,  and says :  "Go to work, it's not like I can't talk to the plumber.........."

 

While I WANTED TO SAY was something like "for the last 3 1/2 years you have been the biggest hermit known to man,  so why would I expect anything different ......" ,   but suffice it to say,  I didn't,  and I just left for work.

 

No doubt,  it's a victory.  I'll take it.

 

Have the wonderful day.