For my fellow Hashimoto's Thyroiditis folks...

RoseTears143

I didn't know where else to put this, but you aren't alone.

I've been battling with this since 2001 and I am seeing more and more people talking about it here on MFP which is great that everyone is networking together for support.

---

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.
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 or very depressed, too. I can also cause other mental health problems.
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.
Teeth and gum problems? TMJ? 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 sick 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 am.
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.
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.

WonderWoman199

Wow! I don't even know what to say....this sums it all up. Thanks so much for posting this.

hegster23

This really does sum it all up. I don't think people realize that Hashimoto's (and other thyroid-related issues) can wreak havoc on a person. It's like a roller coaster ride, but with blind corners so you never know what's coming. I think the only people who truly understand are others like us who suffer from the same thing.

Thanks for posting this.

mamaturner

To the "T". Nearly 4 years and 12 Dr's and I'm finally doing... "better". I've been on multiple medications and told so many things it's not even funny. I've taken more tests than I have fingers... I'm changing my diet to try and help.. I take thyroid supplements at night for the past about 4 months and I have less pain... my brain's still a fog lol.. My husband still feels the pain is all in my head.. to that I always say I'd gladly trade.

Anyone have there's start after having child? That's when mine did... about 10 months after.

RoseTears143

I agree with all of you!! I think my immediate family still thinks what I deal with is in my head as well, but my guy of 3 1/2 years sees every day what I deal with and finally understands how real it is. thankfully I now have WAY many good days than bad days..but I still deal with various symptoms. We are stronger than most people know

RoseTears143

Also...I started having issues in high school in 2001. I didn't even find a Dr to take me seriously enough to test me instead of calling me a lazy teenager until 2006 to get my hypo Dx. Took Synthroid for a few years with NO improvement and after complaining and demanding to see an endocrinologist I got my Dx of Hashi's in 2009. Still took levo for a few years which did nothing but put my TSH to normal still.

Later in 2009 I discovered I had severe autoimmune gluten and casein intolerance which adds fuel to my Hashimoto's attacks but I didn't do anything to correct it. I still ate like crap. Finally last year I told my endo what I was doing wasn't working. So we added Cytomel to my treatment plan and it made me insane...like batsh!t crazy. I asked to be switched to Armour and I went into a hyper swing for 3 weeks that threw me into hypo swing that lasted 6 months. It took 8 months on Armour for my body to accept and adjust to it and I have been feeling increasingly better since removing gluten and casein from my diet since the beginning of March this year.

I also come Monday will be starting to take Westhroid-P which is the newest NDT med that has the fewest ingredients including only 2 fillers which is more aligned with what I'm trying to do with a new clean lifestyle.

Have hope that you WILL get better and figure out how to manage your condition. It's a trial and error thing and of course finding a doc that will listen to you and not treat based on your labs but on resolving your symptoms.

annasuzanna

Wow, I never realized there was a correlation between hashimotos and TMJ. That makes sense as I've been dealing with both for several years. I felt torn when I was finally diagnosed with hashimotos. I was glad there was finally a diagnosis and it wasn't all in my head, but I was angry knowing I would be dealing with this the rest of my life. I also felt betrayed by my body and my immune systems.

RoseTears143

Wow, I never realized there was a correlation between hashimotos and TMJ. That makes sense as I've been dealing with both for several years. I felt torn when I was finally diagnosed with hashimotos. I was glad there was finally a diagnosis and it wasn't all in my head, but I was angry knowing I would be dealing with this the rest of my life. I also felt betrayed by my body and my immune systems.

I completely understand! I cried my eyes out when I got my hypo Dx, but was relieved when I got my Hashi Dx because it made so much sense and I was just happy to finally have answers. The good news is that by changing your diet you can alleviate much of the symptoms.

KimberlyDCZ

Wow, I never realized there was a correlation between hashimotos and TMJ. That makes sense as I've been dealing with both for several years. I felt torn when I was finally diagnosed with hashimotos. I was glad there was finally a diagnosis and it wasn't all in my head, but I was angry knowing I would be dealing with this the rest of my life. I also felt betrayed by my body and my immune systems.

I completely understand! I cried my eyes out when I got my hypo Dx, but was relieved when I got my Hashi Dx because it made so much sense and I was just happy to finally have answers. The good news is that by changing your diet you can alleviate much of the symptoms.

This is how I feel about fibromyalgia. I was so relieved to finally get a diagnosis, even though it was bad. I had a meltdown this weekend and I think my boyfriend is starting to understand but he feels like he needs to do something to help me when he can't. The only thing I asked him to do is be more positive bc after dealing with this and psoriasis, my life gets pretty stressful and negative attitiutes can push me over the edge. God bless the people who have to deal with us. I know they don't understand and I know they can get frustrated, but the ones who really love us will stand by us through it all.

RoseTears143

This is how I feel about fibromyalgia. I was so relieved to finally get a diagnosis, even though it was bad. I had a meltdown this weekend and I think my boyfriend is starting to understand but he feels like he needs to do something to help me when he can't. The only thing I asked him to do is be more positive bc after dealing with this and psoriasis, my life gets pretty stressful and negative attitiutes can push me over the edge. God bless the people who have to deal with us. I know they don't understand and I know they can get frustrated, but the ones who really love us will stand by us through it all.

You are SO right with blessing people that ahve to deal with us!! lol I feel like i really put my guy through the ringer sometimes smh. Having someone stand by your side through the good and the bad and be supportive is the best thing anyone could do.

andiroot

mine kicked in after a year of iron treatments for anemia. my doctor doesnt want to put me on legit meds yet, but i take a few different vitamins daily to help. it kinda works, but i have noticed that my change in diet & exerise hasnt had any real affect on my weight or energy levels. my mind is pumped and motivated but i constantly have to talk myself into it. i also have been reading that certain foods can make it worse when trying to eat healthier, like broccoli, which is my favorite. any tips for adjusting the diet to stay fit as well as not sabotage my HT?

weinbagel

I didn't know where else to put this, but you aren't alone.

I've been battling with this since 2001 and I am seeing more and more people talking about it here on MFP which is great that everyone is networking together for support.

---

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.
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 or very depressed, too. I can also cause other mental health problems.
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.
Teeth and gum problems? TMJ? 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 sick 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 am.
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.
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.

omg yes!!!!!!!

RoseTears143

mine kicked in after a year of iron treatments for anemia. my doctor doesnt want to put me on legit meds yet, but i take a few different vitamins daily to help. it kinda works, but i have noticed that my change in diet & exerise hasnt had any real affect on my weight or energy levels. my mind is pumped and motivated but i constantly have to talk myself into it. i also have been reading that certain foods can make it worse when trying to eat healthier, like broccoli, which is my favorite. any tips for adjusting the diet to stay fit as well as not sabotage my HT?

I know a lot of people that have Hashi's also have an intolerance to gluten so eating anything made with wheat, rye, and barley is just throwing fuel on the fire attacking your thyroid gland. Now I know I can't say this for everyone, but it's something to consider. You could try ditching gluten for at least 4-6 weeks to see if you start to feel better since it takes about that long for it to completely get out of your system. It can even sabotage you for up to 6 months after last eating it.

Broccoli actually doesn't bother me thankfully because I LOVE broccoli lol, but it is one of those foods they say is a goitrogen and can hinder thyroid function. Also soy is a no-no unless it's fermented...think tempeh.

Its odd your doc doesn't want to put you on meds if you have legit Hashi's because it's important to suppress the attacks with meds to stop the destruction of the gland. You might want to consider getting a new doc. If your thyroid hormones are out of range and your antibodies are elevated meds are necessary until you can control it by diet if you get to that point.

Edited to add: I noticed a HUGE difference about 3 weeks after cutting out gluten btw. I also ditched dairy because I have an autoimmune intolerance to casein as well.

mamosh81

i have Hashimoto massive antibodies against my thyroid but my doctor told me i am not low enouph for medication yet but i will be there in 4-6 months without any way to stop it... its such a bummer

MarthaAnn8186

I have Hashimoto's.My doctor said it probably ran in my family. In recent years it had gotten much worse, I thought I was going crazy! It was the change, ect.ect. I have high cholesterol, which has fluctuated over the years, and my memory can be bad. These days I wake up with high anxiety, not fun.
Thanks for your post. I didn't realize how much trouble it could cause.

RoseTears143

i have Hashimoto massive antibodies against my thyroid but my doctor told me i am not low enouph for medication yet but i will be there in 4-6 months without any way to stop it... its such a bummer

Please go get a new doctor. That is SUCH crap it's not even funny. My antibodies were at about 274 and my TSH was barely elevated to about 6 or so and I was already on a low dose of Levothyroxine but when my endo got my antibody labs back she immediately doubled my thyroid dose to try and slow the attack on my glad. Granted, it didn't help because it took me a few years to figure out levo/synthroid did nothing for me but stabilize my TSH - I NEVER felt better - she did try to help me.

Any dr that says you don't need it YET but you might isn't trying to be very proactive at slowing an autoimmune disease that is literally destroying your body and that is tragic.

RoseTears143

I have Hashimoto's.My doctor said it probably ran in my family. In recent years it had gotten much worse, I thought I was going crazy! It was the change, ect.ect. I have high cholesterol, which has fluctuated over the years, and my memory can be bad. These days I wake up with high anxiety, not fun.
Thanks for your post. I didn't realize how much trouble it could cause.

It does a lot to the body, and I do feel for you. A lot of the time it does run in the family. And sometimes it can just manifest itself in one person due to a high stressful time in your life, illness, injury, or a developing food intolerance can spring it as well.

ElizabethKalmbach

Please, kids... Also remember to get your B12 levels checked. B12 is essential for you to BE ALIVE. DEMENTIA is one of the symptoms of B12 deficiency and it can become PERMANENT if you are deficient for too long...

And 40% of hypothyroid patients come up B12 deficient when tested. That's a BIG PERCENTAGE.

Why so many caps?

I just started my B12 shots two weeks ago for insufficient B12 and all my hip and shoulder pain, forgetfullness, concentration issues - things I had been blaming on hashi's are FADING.

Plus, I lost 7 lbs this week after a 6 month plateau. So... There's that...

kcahill1006

I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

RoseTears143

Please, kids... Also remember to get your B12 levels checked. B12 is essential for you to BE ALIVE. DEMENTIA is one of the symptoms of B12 deficiency and it can become PERMANENT if you are deficient for too long...

And 40% of hypothyroid patients come up B12 deficient when tested. That's a BIG PERCENTAGE.

Why so many caps?

I just started my B12 shots two weeks ago for insufficient B12 and all my hip and shoulder pain, forgetfullness, concentration issues - things I had been blaming on hashi's are FADING.

Plus, I lost 7 lbs this week after a 6 month plateau. So... There's that...

I'm glad you are feeling better! I've had low B12 for a long time as well but it is slowly coming up now that my gut is healing from cutting out gluten and dairy since March. If your gut is working better to absorb what you eat and you take a good vitamin, that helps as well.

RoseTears143

I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

My celiac blood test came back as "normal" too...but the false negative rates on those test are very high. I had positive antibodies in my intestines - which it makes more sense to look for antibodies there since that's where the trouble lies. It took about 3 weeks to start to feel better after cutting out gluten for me. It was like I woke up one day and felt amazing. Stick it out...you will start to feel better