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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.

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.

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."

Most sedentary adults-- with or without autoimmune issues-- would benefit from a better diet. For the most part, we get way more dairy and meat than we 'need' and way less fiber and fruits and veg, as you know. If you want to feel like you're helping your body stay strong, feed it a strong diet. Lots more veggies. A big salad every day for lunch or dinner-- it should be the whole meal. Use seeds like pumpkin seeds or sunflower to tip in a little protein. Make sure to vary the veg and even throw some fruit in there. The first day or two, you might feel hungry but you can add a little cheese or meat. Also, you'll find you start looking forward to the meal.

 

it doesn't need to be immaculate nutrition in order for you to see benefits. You can take small, easy-to-manage steps, like: eating the salad 1x a day OR throwing out any crackers, chips and cookies OR starting with a really great breakfast, like some eggs and a green smoothie or some oatmeal with berries. I also love Mark Bittman's idea of Vegan before 6-- that you try to be a vegan during the day and eat what you want at dinner. This plan has good consequences on all kinds of levels. How you feel energy-wise, how your immune system reacts, and  as an added benefit, it lessens our impact on the planet. Nice.

 

*I do limit dairy and don't eat gluten. I came to these choices just by watching my own body's reactions. And I should mention-- I don't eat 'substitutes'-- not a lot of gf products or soy. I sometimes use almond milk. I just try to build my diet around plants with some meat or fish a couple of times a week. I don't think my 'recipe' fits everyone. I think it's a fair point that trying to control diet might be an illusory way of trying to control an uncontrollable situation, but I also think, that we all should eat well and I'll always encourage that.

Autoimmune disease do tend to come in clusters. I appreciate wanting to be prepared, but if don't think anyone can give you percentages of developing another issue...well, at least not with any degree of accuracy. Unless you count allergies, I haven't developed anything else.

Again, I get it. It shakes us up when our bodies don't cooperate. That said, I can't help but think you have two choices here: 1) educate yourself about Hashi's, be proactive and conscientious about your health, figure out what you need to do to feel your best, and then go on and re-start living your life to its fullest; or, 2) fixate on the maybes and possibilities while the world passes you by.

My thyroid cancer could reoccur. How often do I really give it much thought? About 15 mins a year, when I go in for annual testing. I'm a stubborn chick...I wouldn't dream of giving that disease that much power over my life. Keep your head up, you are going to be fine.

Welcome!

Ultrasounds are used to just look at the structural characteristics about the thyroid. The scans don't really say what the nodule is or why it's there.

The vast, vast majority of thyroid nodules are benign.

That said, there are characteristics of thyroid nodules that make the nodule more suspicious for things like thyroid cancer. Dominant nodules that have calcifications do tend to be more suspicious.

So, of course, I say the "C" word and I very much know how scary that is, but thyroid cancer is highly treatable with an excellent prognosis. So if you do have to deal with it - and that's still a very big if - know that you (and the kiddos) will be just fine.

What I have done and continue to do is...eat normally. Do I avoid goitergenic foods? No.  Do I eat them in moderation? Yes, as with anything else. I don't do gluten-free. It's never bothered me and I don't think thyroid disease automatically means you have a gluten sensitivity. But, if you do, by all means, avoid it.

 

I'm a believer in fresh food, trying to minimize the processed stuff, and sticking to high protein, low carb, low-ish sugar diets.

I want to remind everyone that the infinite majority of Hashimoto's patients do EXTREMELY well on Levothyroxine and other drugs. They are usually not found on this forum. Instead, they're out enjoying life. So everyone newly diagnosed should be optimistic!

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 - 

If you guys could post in the new section when it becomes available, that would be great. I'd love for your experiences to be public here because it seems like most of you suffering don't have anyone to share with and it might help others in the same situation who stumble across this site.

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!

http://www.upi.com/H.../?spt=slh&or=14

 

This article supports the advice we often give here to find a very experienced surgeon.

Sounds like you had a completely routine surgical experience, which is good!

I was VERY happy with the surgeon and think I made the right choice by doing some research and finding the best one locally that I could (and would encourage everyone to do the same.  I polled a very well known neurosurgeon and my primary care dr. and they both gave me the same name).  I'll take routine all day long

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.