The fatigue all mighty (and how to fight it!)

Forget pain. Forget stiff joints and headaches. Never mind brain fog, bloated tummy, and blank stares… The worst part of being chronically ill is fatigue. Well, for me at least.

But wait- what is fatigue?

Hmm, the dictionary defines it as a

physical and/or mental exhaustion that can be triggered by stress, medication, overwork, or mental and physical illness or disease. (source)

Personally, I would describe it as a crippling feeling, like paralysis. It’s like my body shuts down, betrays me, and keeps me hostage. Even my mind is tired and sad, my legs feel like they weigh a tone and my eye bags hurt like hell.

It’s draining- both, physically and mentally.

So… isn’t fatigue just a fancy word for being tired then?

No. I believe those two are incomparable. I can take tired any time and deal with it but fatigue gets me. Not only can I barely move and function; there is also this huge mental struggle as no one believes you.

They see you as lazy, sensitive, someone who’s exaggerating and seeking attention. Hell, even you begin to question yourself and start having doubts. Like, could it really all be just in my head?

It took me long, too long to realise that it is not. It’s not just in my head. It’s not my mind making up something and looking for excuses to escape everyday life&errands. I’m not lazy as fuck. I’m fatigued.

It was extremely hard to except that even doing the simplest of daily, basic chores can be such a struggling challenge. I swear, fatigue is the meanest of them all. It’s the most destroying, nerve-racking, and unpleasant feeling ever.

It’s painful, lonely and it can easily turn you into a loner/weirdo. Which is probably why I prefer to spend time alone. There are two good reasons for that. Firstly, there’s no need to explain/apologise myself to anyone. There’s no need to pretend to be all smiley and heroic. Secondly, I have a feeling am an awful friend. I’m far from the trust worthy&reliable partner as I often have to cancel plan in the last minute- simply for being too beat to do anything.

Fatigue sucks you into its vicious whirl and it takes a whole lot of effort to swim out of it. But- it’s possible!

How? 

Like I said, sometimes even the most basic “jobs” seem to be mission impossible. And by basic, I mean getting out of bed and taking a shower.

It’s also tricky. Sometimes you can feel it coming, and sometimes it comes out of nowhere and knocks you down.

This’s why it’s such a mental war- that suspense of never knowing when it’s going to hit- that’s the worse. I can say for myself I’ve been through many battles. Some I lost. Some I won. Some I’m still fighting.

But I don’t believe in giving up, and even less in feeling sorry for myself. So I try my best at all times. It’s not always easy. But that’s life, right?

However, there were times when I truly hated and despised myself. I felt so much anger and frustration, even jealousy. I was jealous of others because they could go out and do stuff, and I couldn’t.

What truly drove me insane was hearing them bitching about the most petty things and constantly complaining over such silly matters as having a bad hair day. You ever had a fatigue day?

Of course, hatred and bitterness are never the answer.

Should I say or should I remain silent?

I was often torn between desire to “let it all out” and explain others how I feel, and lethal fear they would all think I’m a whiner.

When I still experienced prolonged periods of fatigue, I became much of a loner and control freak. So soon, the fatigue itself wasn’t such a big problem anymore. Now the problem was what I was becoming.

This was the turning point- the point where I knew I needed to do something. I needed to learn to relax and let it go. Let it all go and accept that fatigue is a part of my life now and that I don’t have to feel ashamed and guilty about it.

Accept it

Like I mentioned in one of the previous blogs, accepting the disease doesn’t mean giving up. It just means you “welcome” the disease and take it as a part of your life- because well, it is. I can’t give any proper advice on how to accept it, because there’s no universal recipe. In fact, it’s a long and often painful process. Maybe I could best describe it as learning to love yourself all over again. Getting to know yourself again. Forgiving  yourself.

Talk it

No, I don’t mean whining and complaining. Talk to yourself and be honest. Admit yourself you’re tired and recognise that you just can’t do certain things. This is when the part of forgiving yourself begins.

Also telling others, those who you trust, won’t hurt. Let them know you’re not feeling all that well and that you might be a bit slow that day.

Just remember two things you should NEVER do: feeling sorry for yourself and letting others patronise you!

Work it 

Finding your inner peace is hugely popular these days. We should all be enlightened, happy, smiley, spiritual, and BFF with the universe. Yeah. I’m not buying this. While I’m all for being and feeling confident and content, I also believe happiness is relative. Besides, how could we ever truly appreciate all the good things without a little pain and suffering, right? 😛

The minute you realise that, kick back, relax, and start trusting yourself (again) things change and improve.

Walk it

Another thing I noticed is that moderate exercise definitely helps. I could go all big and claim that yoga is the best- but that was me last year. This year I’m more into walking. What can I say…I’m a bit fickle, ha-ha.

My yoga’s always been extremely basic, more like a bit clumsy stretching. This year it’s the long walks. Whatever floats your boat, just make sure you move your body. Yes, I know it’s sounds bizarre coming from the mouth of someone who knows how fatigue feels like, but moderate, easy and gentle moving helps. Maybe it doesn’t take the pain away but it clears your mind. And this brings me back to the importance of having your shit together.

Bottom line: fatigue is not in your head. It’s real. But overcoming it often starts and ends in our heads. When it hits, take time to rest and recover. When it goes away, enjoy every minute of life. ❤

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When was the last time you checked your neck?

January is thyroid awareness month. You know, thyroid, that little gland located somewhere in the middle of our necks that loves to cause troubles? Yup, that’s the one.

Before being diagnosed myself I hardly knew of its existence. No wonder I sometimes joke and say that I can divide my life into two eras: before and after thyroid. Before was easy. After- not so much. It’s scary to think that almost every other person I meet, is or knows someone who is affected by it.

Still, no one seems to take it seriously. It’s like a joke. Because, what could something so small and shaped like a freaking butterfly, really do? Well, where do you want me to begin?

Do you often feel exhausted? So tired you can barely walk and move?
Do you perhaps feel moody, sad, depressed?
Do you ever feel nervous for no particular reason, all jittery&anxious?
Do you feel like you’re forgetting something?
Does your heart race a bit more than usual and it’s not thanks to love?
Do your stomach and guts protest a lot?
Do you wonder where your sex drive disappeared?
Do you also wonder why your periods are acting crazy?
Is pain your new best friend?
Do you feel super hot and/or super cold?
Do you wonder when did all that weight came or left?
Do you wonder how come you’re still not completely bald when your hair is falling out with the speed of light?
Do you feel like there’s something in your neck?

There just might be! Those are just some of the symptoms. Just some. That’s right. I know they’re pretty vague, not to mention common. No wonder it’s so hard to get a proper diagnosis.

What’s even worse is that once you’re diagnosed, most doctors believe that’s it. You get your pills or other treatment, and for them, the work is done. In reality, it only just begins. Right dosage, flare ups, collapses, inflammations,… big changes in your life are to follow. Life is never the same again.

Check your neck. Often. Trust yourself. Find support. Offer support. And stay strong.

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Grateful for disease?

Is it possible? To, you know, be grateful for being a chronic patient and having to deal with all the crap that comes with it? Like… being in pain most of the time, planning your doctors’ appointments rather than parties with your friends, having to watch what you eat, and never knowing what a day will bring. Of course the list goes on, but you get the picture, right?

Anyways, I’ve noticed this is a pretty “hot” and controversial topic among chronic patients. I too have often caught myself thinking: “Damn, I am actually grateful for all the shit I’ve been through.” It took me a while to realise that obviously I’m not grateful for the disease itself (hey, even I am not that kind of a martyr), but for the lessons I was able to learn. My life has definitely changed and, in a way, so have I. While I’m still the same old me in the very core, the way I perceive and see life has changed and so have my perspectives and priorities. And yeah, I’m grateful for this, because no matter how, umm, tough life might be sometimes, I appreciate the following lessons:

1. Things don’t make you happy
It seems pretty obvious, doesn’t it? Things are just things, yet so many people believe they will bring that ultimate feeling of happiness, fulfillness- peace of mind if you want to. So their only goal is to have things. And not only that, they also strive to do things that please others but not them.  They go to certain schools, hang out with certain people, go to certain places, work certain jobs, etc,… only to… what exactly? Put more pressure on themselves? Because in reality- why care what others think? Owning and doing things doesn’t make you happy. Maybe only temporarily. After all, happiness is a state of mind, not a state of possession and position.

2. Looks are overrated 
Don’t get me wrong, deep down I’m sure we all like to feel pretty. But then again, what’s pretty is pretty relative, aye? I’m also not saying that neglecting your personal hygiene is the way to go. However, I do wonder what real difference does our appearance make? I used to be obsessed with looks and wouldn’t leave the house without checking myself in the mirror, like, zillion of times. Then, during my biggest fight with disease, I completely lost interest and had rarely put any make up on… which was actually quite liberating, despite all the sorrow that surrounded me. I learned that if you feel fine this is all that matters. Life is this moment. It goes by quickly and can end any moment. So obsessing over looks in a way that you dont’t feel complete without looking like a picture perfect is just a waste of precious time.  Well, I did manage to “restore” my love for make up and I’m glad about it, but I don’t feel the “pressure” of it anymore.

3. Food matters
I learned this the hard way. Damn, did I suffer. It hurts to even think about it, and I still haven’t completely recovered, or better said, forgiven some people. Once again, common sense proved to be the best medicine. There’s no such thing as super foods, shortcuts that would heal you and allow you to play games and be reckless with your dietary choices. There are only real, wholesome foods that will help you get and stay better. If they’re prepared with love and eaten in peace they will prove even more beneficial. So forget about fad diets, trends, pills and wonders. There is no such thing. Make that change, do it for your guts and your body will thank you.

4. Face your fears
Getting sick gave me a unique glimpse inside my mind. It brought me to the edge and I was in an unknown, very dark and very unpleasant place… yet I survived. Thanks to one simple trick- facing my own fears. Do you worry about what might happen? Think about it! Don’t ignore it. This just adds to frustration and frustration results in all the bad things… you end up fighting with yourself, your loved ones, and everyone else. You become bitter and miserable. So fuck this shit and simply face your fucking fears. Consider all the options. Play with all the scenarios. Do it and I promise it will be easier. The tension will begin to fade. I learned that the true strength lies within me and that this is enough.

5. You become stronger
According to the internet it was Bob Marley who said: “‘You never know how strong you are until being strong is your only choice.” He couldn’t be more on point! Disease changes your life. It shatters the world you used to know. You are left with two options: feeling sorry for yourself or fighting for yourself. If you choose the latter, you win. You become tougher. Or maybe less sensitive. Either way, your skin grow thick and this enriches your life.

6. Don’t take life or yourself too seriously.
Damn, the most valuable of all lessons. Life is too fucking short to live like you have a stick up your arse. And no, I’m not talking about yolo. This shit is overrated and stupid. Life is not a fucking competition. Bottom line is, we all die in the end so why rush it, why worry about what others think or act like the world is going to collapse if we make a mistake? If you’re able to learn something from it, and use this for improvement, then you win.

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Are plants enough?

Being vegan sounds extreme to many. But being vegan and being chronically sounds like you lost it. Especially now, when following auto-immune protocol and paleo diet is hugely popular. People are almost literally gobbling down enormous amounts of (animal derived) proteins, tons of fats and zero carbs.

Then there’s me, stuffing my face with unlimited carbs, cooking with no oil and eating tons of “sugar” that comes from fruit. Oh, and everything I eat is completely plant based, of course.

So I really shouldn’t be so surprised (and annoyed) to get raised eyebrows and weird looks. The one question I hear a lot is- are plants enough? Well, to end this “mystery” I decided to answer the most common questions I get. Here we go! 🙂 But before I begin, let me point out one more thing: I’m vegan for the animals and our planet and I follow wholesome, healthy plant based diet for my health. 😉

Can you be plant-based (vegan) when you are a chronic patient, struggling with many auto-immune diseases?
The answer is very simple and straight forward. Yes. Yes, you sure can! I’ve been “proving” that for almost 4 years now.

Will it cure of your diseases?
Well, this one depends on the disease you have. But if I’m referring to auto-immune disorders, such as Hashimoto’s, then the answer is no.

While plants are the most delicious, wonderful, versatile and all around brilliant food, they are no effing superhero and if your immune system is a bit bizarre and “enjoys” attacking itself, it’ll continue to do so.

However- eating balanced, wholesome plant based diet can put certain diseases and conditions in remission and make your immune system stronger! And that matters, trust me!

But why eat healthy, if you’re still sick?
How about, because it makes me feel great and because I love it? I don’t see it as a struggle or deprivation. In fact, I’ve never eaten better than I do now!

But to be honest, it was puzzling at the beginning, especially because people are quick to judge and point their fingers, like- what’s the point then? You eat healthy, but you still feel (and look) like shit.

Hmm, if I play this “but-you-don’t-look-sick” card, then what people can’t see and even less feel, they cannot understand. But I know. I know how I used to feel. I was unable to leave the house. Unable to stand up straight and socialise. I was in constant pain and lived with a huge stigma.

So yeah- plants won’t cure me per se, but they made my life tolerable again. In comparison to before, I now thrive. Yes, I still have flare ups and stuff, but so do the people who follow AIP. I’ve talked to enough of them to know this for certain.

If you’re a chronic patient with a immune system on the loose, you’re bound to collapse every now and then. But eating healthy pays off, because it makes that time in between bearable.

What’s up with clean eating? Ain’t that just another eating disorder in disguise?
I can’t speak for others, but for me, it definitely isn’t. In fact, with my (ruined) guts it is the only option… and I actually love it. Some may think I am a fussy eater, but I see it as a perfectly normal lifestyle I enjoy very much.

My “diet” (not a fan of this word) involves lots of fresh fruit and veggies, lots of unprocessed carbs and a little amount of good fats. All prepared from scratch if only possible.

Besides, I firmly believe there’s nothing wrong if you want to eat healthy and skip on things that are full of ingredients one can’t even pronounce.

Does it have to be organic?
I do prefer to buy organic whenever possible, but I’m not obsessing over it. I will much rather buy produce from a local farmer than buy something in a store, brought from afar, just for the sake of its organic label. What’s more important to me is that the food is local, seasonal and preferably not packed in plastics.

It also depends on my budget. I have no intention to go broke by vigorously buying only organic. I became quite a savvy over those years, when it comes to shopping, can proof read ingredients like a real pro and know where to buy and how to buy all the good stuff. Practice makes perfect or something, aye?

What about super foods?
Ha, I remember when I first started reading and investigating all about food, its combinations, macros and micros, nutrients and all that jazz. Damn, with so much information out there, no wonder people are confused.

All these super foods are also super expensive. But do they do their job? Maybe some do, I don’t know. My budget and patience aren’t big enough to try them all out, but my common sense is quite down on Earth, so I figured that if humanity survived this long without taking million supplements and obsessing over super foods, then they are not so necessary. I guess they can make a great addition in one’s diet- I’m not going to lie, I’m a huge chia pudding fan, but do I really need all those pricey powders shipped from other parts of the world to be healthy? Nah, not really.

Acai powder vs local wild blueberries? Quinoa over buckwheat? Well, I will much rather have buckwheat porridge with blueberries. These are the real super foods- homegrown, local and seasonal.

Besides, no amount of super foods can erase all the “wrong” food one eats.

But…what about the taste?
With all this artificial food out there, it is no surprise that people gag when they try unprocessed food for the first time. But guess what- you get used to it. And once you do, once you get back the real taste of food, there’s NO way you can go back to eating crap. Real food, like dunno- fresh tomato from the garden- tastes phenomenal and it doesn’t even need any seasoning.

But can you get everything from plants?
Yes. Wholesome, delicious, preferably homegrown plants give you everything and they nourish you from the inside and outside. They are full of fibers, vitamins, minerals, they are packed with nutrients, and yes- you get more than enough protein from them!

Isn’t eating vegan boring?
This one always makes me giggle. With so many different kinds of plants, how could eating this way be boring? Since I don’t get stranded on desert island on daily basis, my food’s definitely not boring. In fact, I’ve never been more creative or eaten more versatile.

What exactly do you eat then?
Here’s the thing- I’m a pretty hardcore ethical vegan but the health aspect plays a huge role in my veganism, therefore I try my best to eat healthy. I find that eating enormous amounts of carbs, very little fat and lots of fruits works best for me. I could say I’m one of those high carbs low fat vegans who follow raw till 4. Only that I’m not. I could never be completely raw and I also don’t enjoy labels.

Lemme just say that my favourite things to eat are: fresh, seasonal and perfectly ripe fruits, sweet potato, pumpkin, pasta, homemade pizza and almost all the veggies.

But why do you take supplements?
I only take B12 and vitamin D. Ask any other chronic patient what they take and the answer will be pretty similar, them being vegan or not. In fact, did you know that vitamin D plays a crucial role in maintaining a good health and that most people are insufficient? So much more if you struggle with chronic illness(es).

What are the benefits of eating this way?
For starters- long gone are the days of me struggling with IBS and leaky gut.

My allergies improved and I almost don’t need to take medicine anymore. My skin improved and so did my energy levels.

And I love what it did to my mind- it’s so much clear and sharp now. I very rarely get cold, and even if I do, I get better in a couple of days. So yeah. I’m sticking to eating plants.

Let’s talk booze!
There were times when I had my fair share of booze, but now it’s best for me to stay away from it. That’s all I’m saying. Alcohol no longer likes me, ha-ha.

Hmm, I think this pretty much covers it. 🙂 If anyone has any other, new question- shoot it. I’m curious to hear and will gladly answer. 🙂

Are plants enough

 

Until death do us part

Happy birthday to me! Well, not to me but to my Hashimoto+hypothyroidism- better yet-the time they “came out”. Today marks their fifth anniversary- or with other words- my diagnosis is exactly 5 years old. It was on the 8th of April five years ago when my life drastically changed after hearing this from my doctor:

“You have the same as your mother, only you need to take the medicine. Here are your pills. Come back in 6 months or sooner if you decide to have a child.”

This was it. With those words I was left out of his office. I remember that day so vividly it’s scary. I remember coming out of his office with a huge grin on my face (don’t ask…guess this is just my way of dealing with things, lol)…but then again, oh boy, I was so young. I still relatively am (or at least I pretend to be), but back then I was super young, super naive and without the slightest idea of what any of what I was just told actually meant.

Who knows how long would it take to be diagnosed, if it wasn’t for my mum who was sent to see a thyroid specialist. Because those diseases run in family I too was called for a check up. And showed up without the papers (it takes a talent to forget such things at home, doesn’t it?) so my appointment was to be postponed for a couple of months. Only it wasn’t, once the nurse remembered my mum. A week later I was sitting in the doctor’s office when he told me what I wrote above.

I swear it was all over in less than five minutes. Yup, that’s right. Less than 5 minutes for a disease that changed everything and turned my life upside down. Remember when I said I was grinning on my way out? Well, little did I know this disease was going to wipe all the smiles off my face on more than one occasion.

Looking back at my life prior to disease it seems like it was made out of unicorn and rainbows. No, I didn’t have it that easy. And no, I don’t have it so incredibly difficult right now. But if I am to compare the level of my naivety, then yeah, my “old” life was super naive. Then I crashed. But I didn’t burn. And that’s all that matters, right?

The bitch (disease) slapped me right in the face. And it’s a good thing! It was a wake up call, although it could’ve been a bit nicer, more gentle perhaps. But let’s not complain, m’kay? 😛 

Anyhow, I went from a girl full of life and laughs to a lifeless mess who is fluent in sarcasm. From a girl with friends and social life to a loner who spends her days on her smart phone and best tolerates the company of her cats.

Okay, all jokes aside. It’s really SO much to take in. You go and see a doctor and everything changes. You don’t notice it at first, but the change is there and it affects so many things- it affected my relationships, goals, values,… I got lost and I got found. Then I got lost some more.

Despite all the bad things, there are also good things- you become a fighter, a true warrior! And with all the knowledge of your disease and body, you could also easily get a honorary degree from medical school. Heck, back then I didn’t even know that Hashimoto and hypothyroidism are two different things. Or that auto-immune diseases love company. Now I know all this+much more.

The only thing my doctor told me was that I can forget about diets and changing lifestyle, because nothing helps when your immune system is acting up. Well, I learned that changing diet and lifestyle doesn’t cure, but it sure does help! You’re on your own. Nobody is going to help you if you don’t help yourself. That’s another valuable lesson I learned.

Living with those diseases ain’t easy. It’s a never ending process and I do get a little scared from time to time when I think of the future. Then on the other hand I’m also grateful that I got bitch slapped. So I’m ending this day with pretty mixed feelings. And sadly without a cake. 

Ah, whatever Mr Hashi&co, we’re in this together…till the end, right?

 

Meet Mr Hashi

So…while I could write an entire essay about Mr Hashi (as I call it), I’ll rather begin by posting this very accurate letter from Mr Hashi itself. I found it on Thyroid Sexy FB page and could relate immediately. Whoever wrote this really nailed it! It’s so true and real and definitely worth sharing. So here’s what Mr Hashi has to say:
Source

Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.I am now velcroed to you for life. If you have hypothyroidism, you probably have me.I am the number one cause of it in the U.S. and many other places around the world. I’m so sneaky–I don’t always show up in your blood work.Others around you can’t see me or hear me, but YOUR body feels me.I can attack you anywhere and any way I please.I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.Remember when you and energy ran around together and had fun?I took energy from you, and gave you exhaustion. Try to have fun now.I can take good sleep from you and in its place, give you brain fog and lack of concentration.I can make you want to sleep 24/7, and I can also cause insomnia.I can make you tremble internally or make you feel cold or hot when everyone else feels normal.I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too.I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.Some of my other autoimmune disease friends often join me, giving you even more to deal with.If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons:That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I’m here to stay.I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.There are so many other ways I can make you sick and miserable, the list is endless – that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.Can’t get pregnant, or have had a miscarriage?That’s probably me too.Shortness of breath or “air hunger?” Yep, probably me.Liver enzymes elevated? Yep, probably me.Teeth and gum problems? TMJ?Hives? Yep, probably me.I told you the list was endless. You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.Not what works for someone else.The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.I am Hashimoto’s Disease.