# Need some advice from wise hashimotos sufferers :)



## Bigggidears (Oct 1, 2013)

Ok basically i am a 22 year old male and i was diagnosed with hashimotos nearly 2 years ago and I take levothyroxin my tsh is 1.7 and I take 100 mcg

I still feel like death
Always tired 
Depressed
Hair is dry and breaks easily (started with levothyroxin)
Generally feeling flu like malaise

I want to try a natural hormone as i have read it can alleviate these symptoms
But there's no chance of getting it with my doctor he hasn't even heard of it:/
I have been tested for all sorts and my doctor says there's nothing seriously wrong with me.

Anyway my symptoms started with a rapid heart beat and heart palpitations 
And I don't think I really had symptoms of tiredness ect until I started my tablets (levothyroxin) I just said this to my doctor and he suggested I do a 2 week trial without taking them.

My question is, is this a safe idea? My levels where really low before I started taking these tablets, and I've been on them for over a year now. I am now anxious to go a whole 2 weeks with out them. Seeming as it's get a cut off no weaning just stop.

Any suggestions on how to feel good again would be appreciated most days are slept away


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## joplin1975 (Jul 21, 2011)

As long as you still have a thyroid, it's worth a try, I suppose. Although I would bet you won't find much relief.

I would suggest posting your labs with reference ranges. Make sure you are testing TSH, free t4 and free t3.


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## Desertrose (Jul 30, 2013)

Sounds like you're hypo?
I'm no expert but sometimes you can have problems converting T3, which from what I've read is why it's a good idea to find out what THAT is doing. (Something some doctors don't do, they just look at TSH which isn't the whole picture) 
What are your iron levels like? Diet? Have you tried going gluten free? Ha, I'm one to talk just breaking my gluten free diet. It did make me feel less sluggish though when I was being "good" 
I don't know....if you're not doing well WITH added hormones even if they are synthetic thyroid hormones, and you weren't doing well before without anything....doesn't seem logical that just stopping is going to do a great deal of good. Not long term anyway.

From what I understand, thyroid meds are cumulative in your system. That's why they say it's not a big deal if you forget a dose. So it seems logical to me that if it takes time to build UP in your system then it would also take time to get out of your system, so stopping suddenly shouldn't bring about immediate effects I am assuming.


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## Bigggidears (Oct 1, 2013)

Thanks for the replys!
I still have a thyroid but they found several nodules on it!
I don't the rest of my results but the doctor assured me that they are normal including the t4 and t3, I'm just fed up it's been going on for so long now I feel like I'm never going to feel well 

When it comes to diet it seems to affect me big time I've been gluten free for about 6 months now and I still feel like same but I went on a really restrictive diet living off salad meats and a vegetables cut out all night shades ect and I felt a bit better but it didn't seem to do anything for my tiredness ect but the craving for junk food is unreal and sometimes when I feel like I'm not getting anywhere I brake and buy some Ben and jerrys lol
The funny thing is when I do this I wake up the next morning with puffy eyes and I'm soar all over and my symptoms are much worst. So I think I have some kind of food intolerance. But I just feel lost as when I don eat junk I still feel like death just processed foods and nightshade seem to aggravate things. 
Levothyroxin contains lactose I believe so I wonder if that could be the problem
But I don't really have any digestive issues it's more brain fog fatigue swollen lymph nodes and fun stuff like that.

Sorry for the long moany post haha
I'm quite new to all this and some guidance would be so appreciated

Thanks again


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## Bigggidears (Oct 1, 2013)

And i have no idea on iron levels but I'm not anaemic according to. My doctor xx


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## Bigggidears (Oct 1, 2013)

Does anybody get nauptural thyroid hormone in the uk? If so how can I get hold of a doctor that will help me ?


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## StormFinch (Nov 16, 2012)

"Normal" for doctors definitely isn't always the same thing as normal for thyroid sufferers. To a doctor a .90 Free T4 can be normal, even though the bottom of the normal range is .80. The same is true for things like iron and D, which we are notorious for having low levels in, and deficiencies in can cause symptoms similar to hypothyroidism. Go into your doctor's office and ask for a copy of all your labs. I don't know about the UK but in the US they are required to give them to you.

Check out this group of resources, several have international lists of patient recommended thyroid doctors: http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/


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## Andros (Aug 26, 2009)

Bigggidears said:


> Ok basically i am a 22 year old male and i was diagnosed with hashimotos nearly 2 years ago and I take levothyroxin my tsh is 1.7 and I take 100 mcg
> 
> I still feel like death
> Always tired
> ...


My goodness!!!

When did you last have thyroid labs run? If recently, please post the results and the ranges.

What basis was used for determination of Hashimoto's?

Here is some info that may be helpful to you................

http://www.stopthethyroidmadness.com/free-t3/

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm


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## Bigggidears (Oct 1, 2013)

StormFinch said:


> "Normal" for doctors definitely isn't always the same thing as normal for thyroid sufferers. To a doctor a .90 Free T4 can be normal, even though the bottom of the normal range is .80. The same is true for things like iron and D, which we are notorious for having low levels in, and deficiencies in can cause symptoms similar to hypothyroidism. Go into your doctor's office and ask for a copy of all your labs. I don't know about the UK but in the US they are required to give them to you.
> 
> Check out this group of resources, several have international lists of patient recommended thyroid doctors: http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/


Hello storm finch I don't have my results to hand but I will defiantly get hold of them and post them up here, I have made sooo many doctors appointments about this and the doctors see my results and say there optimal but I am not sure if they are testing anything more than my tsh and t4 to be fair. They just keep trying to get me to take anti depressants which I really feel Isn't needed if they treat my hashimotos! I recently started taking a multivitamin I haven't noticed any major changes. I see that you take armour, have you tried levothyroxin? Did you find a big difference?

Thanks for helpin!


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## Bigggidears (Oct 1, 2013)

Andros said:


> My goodness!!!
> 
> When did you last have thyroid labs run? If recently, please post the results and the ranges.
> 
> ...


Hello  
I don't know my result apart from my tsh which was 1.7 but my t4 was optimal according to the doc :/

I was diagnosed with hashimotos after they found high levels of antibodies in my blood test and thyroid nodules in a ultra scan

And thanks for the link I'll have a look now


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## StormFinch (Nov 16, 2012)

Bigggidears said:


> Hello storm finch I don't have my results to hand but I will defiantly get hold of them and post them up here, I have made sooo many doctors appointments about this and the doctors see my results and say there optimal but I am not sure if they are testing anything more than my tsh and t4 to be fair. They just keep trying to get me to take anti depressants which I really feel Isn't needed if they treat my hashimotos! I recently started taking a multivitamin I haven't noticed any major changes. I see that you take armour, have you tried levothyroxin? Did you find a big difference?
> 
> Thanks for helpin!


You're very welcome Bigggidears. 

I've been on levo several different times and always felt like I had the flu while taking it. Armour doesn't do that and I'm controlling my symptoms and labs really well on it.

You mentioned that you have nodules, have they been biopsied?


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## Desertrose (Jul 30, 2013)

From what I've heard and read some people do just fine on synthetic hormones. You guys all talk about levothyroxine. That's not what I take - I've been given Eutroxsig. (I'm in Australia) I've read though that for some they do much better on Armour - and if you want to be able to get that I guess you'll just have to keep seeing different doctors until you find someone who will prescribe it. I have a feeling though that most doctors don't want to prescribe anything other than synthetics. Seems to be the case in Australia anyway.

I was thinking last night after reading what you said about your diet.
I really do believe that most people with Hashimoto's have compromised digestive systems.
80% of the immune system is in the digestive system!
Apparently 10 or maybe it was 20%? of thyroid hormones are somehow, I'm not sure how it works exactly, produced, or somehow created...through the digestive system! 
So if your gallbladder, pancreas and liver are not functioning well then you are likely to be not synthesizing all of these vital nutrients, vitamins, minerals that your body NEEDS in order to be balanced and in turn this affects thyroid production. 
It's a matter of which came first though, the chicken or the egg...
The thyroid can affect the digestive system and the digestive system can affect the thyroid.

For me I got the flu symptoms before I was diagnosed and I believe - just my own personal thought/feeling, that this was when inflammation was running rampant in my body.
I was drinking every night, couple of glasses of wine...I believe all the sugar in alcohol wreaked havock on my system. I KNOW it did. I ended up with a fatty liver and triglycerides through the roof.
Stabilising sugars in your body is VITAL when you have Hashi's. Never skip meals....avoid too much sugar. Eat as healthy as you can.

I think you have to be your own detective really...
Try different meds, try avoiding all the things in your diet which your body TELLS you it doesn't like. 
Take the suppliments needed (if required) 
Selenium is supposed to be excellent for balancing the thyroid.

Good luck...I get so angry reading of SO many peoples stories of suffering and feeling so crappy, and all doctors want to do is look at numbers and treat one small organ in our bodies - the thyroid, and forget that we are a complex network of systems that are all interlinked.


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## Bigggidears (Oct 1, 2013)

StormFinch said:


> You're very welcome Bigggidears.
> 
> I've been on levo several different times and always felt like I had the flu while taking it. Armour doesn't do that and I'm controlling my symptoms and labs really well on it.
> 
> You mentioned that you have nodules, have they been biopsied?


Really! I need to get myself on some natural desiccate hormone but in the uk my doctors won't have it the only way I can do it is privately and it would be very expensive! And i have no idea where to start with it all :/

I saw a endo and he said because I have high antibodies and lots of nodules I don't need a biopsy as this is what happens in hashimotos. Seems like he couldn't be bothered really, so frustrating I have been ill for nearly 2 years now I am pretty much bed ridden!

Sorry about the moaning haha


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## Andros (Aug 26, 2009)

Bigggidears said:


> Really! I need to get myself on some natural desiccate hormone but in the uk my doctors won't have it the only way I can do it is privately and it would be very expensive! And i have no idea where to start with it all :/
> 
> I saw a endo and he said because I have high antibodies and lots of nodules I don't need a biopsy as this is what happens in hashimotos. Seems like he couldn't be bothered really, so frustrating I have been ill for nearly 2 years now I am pretty much bed ridden!
> 
> Sorry about the moaning haha


Your doctor is only guessing based on some familiar clinical symptoms that "some" Hashimoto's patients have.

Here is the real deal.

Histologic diagnosis of Hashimoto's
http://emedicine.medscape.com/article/120937-diagnosis

Hashimoto's Hurthle cells
http://www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)71549-2

http://www.thyroidmanager.org/chapter/hashimotos-thyroiditis/



Guys need hugs too! Don't worry; we will get you on track one way or the other.


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## Bigggidears (Oct 1, 2013)

Desertrose said:


> From what I've heard and read some people do just fine on synthetic hormones. You guys all talk about levothyroxine. That's not what I take - I've been given Eutroxsig. (I'm in Australia) I've read though that for some they do much better on Armour - and if you want to be able to get that I guess you'll just have to keep seeing different doctors until you find someone who will prescribe it. I have a feeling though that most doctors don't want to prescribe anything other than synthetics. Seems to be the case in Australia anyway.
> 
> I was thinking last night after reading what you said about your diet.
> I really do believe that most people with Hashimoto's have compromised digestive systems.
> ...


Thank you for taking the time to write this, 
And your right I don't think I'm ever going to get anything different than levothyroxin my doctor doesn't even know there are different brands :/

And the diet I have to be so strict I don't think it healthy I feel lost on what to eat because even when I'm being strict I still feel like death just not as swollen ect, I've tried explaining this to my doctor and they just think I'm depressed or they kind of just dismiss it. They have tested me for everything under the sun. So I guess they have covered themselves.

I deffently agree with you on inflammation I'd say that's what is causing my to feel worst and why being on a anti inflammatory diet makes me feel slightly better.

Your so right the doctors see my levels are normal and that's it

:/
Cheers


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## Bigggidears (Oct 1, 2013)

Andros said:


> Your doctor is only guessing based on some familiar clinical symptoms that "some" Hashimoto's patients have.
> 
> Here is the real deal.
> 
> ...


Thanks for the reply I'll have a read now  and I pray I'm back on track soon!
Your right we do  lol


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## Andros (Aug 26, 2009)

Bigggidears said:


> Thanks for the reply I'll have a read now  and I pray I'm back on track soon!
> Your right we do  lol


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