I really have not felt any support from my husband. I think he thinks I am a hypochondriac. He never asks me how I feel or tries to talk to me about my treatment. Honestly there is a huge wedge. I feel like I am dealing with this all on my own and that makes me feel extremely lonely.

I thought we married for better or for worse, in sickness and in health. Maybe I need to remind him of that. ugh... Or maybe the death do us part may come sooner than later, that is if they can't get our meds right.
Only if they could live in our bodies for a week, then maybe they would change their tune...
Good luck to you let me know what works, maybe I could use your advice... :)

jwlee,

By this time you know what I have gone thru in this regard, a total disaster. I wish everyone on this panel would share their experiences, there is a certain comfort in knowing you are not going thru this alone.

I have been quite frank on this issue recently, re-read some of my posts, heleron has been forthcoming, and a few others but I am POSITIVE that hundreds of others experience the same thing but are reluctant to report it.

Someone should do a study about this. MB posted a survey about the subject about a week ago, but the study was already filled to capacity..... gives you an idea how devastating this disease can be not only to your body but to your soul and personal life. So sorry jwlee.

I didn't wanna post (but at GageL's prompting I'll share). I got a divorce. However, my experience was fairly intense and it took a looong while to get some real medical help.

Now, later, I remarried, but it's still a struggle. It's important to keep the communication lines open...but I don't overshare. Meaning, he knows when I feel like crap (and I have more than one health issue), but I usually say, "You know this isn't forever, right? It'll pass. It just takes time."

She remembers you as "flawless you" health-wise. She's just scared and tired and afraid. Same as you...just the flip side of that. She's scared you won't get better ...or that you'll get worse. She may not be sure how to express that, but at least she's talking to you. When she stops talking...that's when you need to worry.

And, having this particular problem (hypothyroidism) makes it even worse because it inhibits your ability to react with a "measured response". Your body will over-react or under-react and so will your mind. It WILL get better with proper treatment, but not until then. Until then, self monitoring is important....and HARD. Take several steps back and think, If she felt like I do right now....would I cut her some slack? And then cut her some slack.

When you start to get better with proper thyroid treatment...she'll see YOU again. Until then, you can explain to her how bad you feel...but she's thinking, "OMG this might be forever!" Remind her that you're not giving up.

I know it's hard to console someone else when you feel like hell...but I can tell you from THIS experience and a health crisis that was much worse than this: It's one of the hardest things to watch your loved ones freak out and feel helpless when you're the one in the hospital bed. And, right or wrong, it is the sick who console the family and caregivers. It just is.

MB, that explanation, as usual, was brilliant and right on target. Thanks so much for sharing.

When I was a child, Even as a toddler, I understood how badly my mom felt by the looks of her face and body movements. I had a lot of sympathy for my mom. I always tried to do for myself even as a toddler.

Once my Mom sat down, it was very hard for her to get up. As we spoke to her, she struggled with paying attention. I vaguely remember her spells of crying and she would always have a tissue in her apron pocket. When she got up in the morning, she looked like she never slept. When she took her 2 p.m. nap she looked worse than before she went to bed. I saw all of this at a very early age and had sympathy for her. My dad worked my mom like a horse -- goes with the culture!! He didn't care if she didn't sleep, didn't feel good. She HAD to wait on him every single day of her aching life. I just got done telling him how uncaring he was towards her and what a rotten partner he was to her -- that God gave him arms and legs BUT HE NEVER USED THEM!!

ANYONE with this disease, looks like they got something wrong with them.

The director at school -- I knew for years that something had to be wrong with her. I saw that she did not look well. You that run-down, no-sleep, disheveled look. Then a couple of years later, she shared with us about ordering her meds online and they -- didn't come in! Yikes!! I can't imagine going a day without thyroid meds. If I take them late, even 10 min, I get a headache.

I sorta understand about having an uncaring spouse -- I had one. I've recently learned that the X acquired conjestive heart failure --maybe he's gained some empathy while dealing with this medical problem! When I had a migraine headache, after I vomited a few times, he asked me, can't you pretend you don't have a migraine? How stupid was this! Another time, a bee bit me and my whole arm swelled up AND turned purple -- he told me I was a big baby. At that time, the doctor wanted to drain my arm because it was so big.
What goes around comes around! He's a bigger baby now! He wasn't worth speaking to so I just ignored him!

My mom was diagnosed with Hyperthyroid and later HYPO and she was only treated with T4 -- NO THYROID -- on, and an ANTIDEPRESANT! I had sympathy for mom all thru her life. I learned after she passed that she went THRU many doctors -- trying to get the right help! I tried to do for myself and as a toddler she told me, "You're always trying to do things yourself, let me help you." I CLEARLY understood, saw and FELT HER PAIN. I was in pain for her at such an early age. She NEVER spoke of her health problems but I knew something was wrong. Not once did she ever complain but I saw her pain and discomfort. As a child I would wonder why doctors were not helping her. I kept waiting for my mom to start feeling better. I felt sorry for her that she needed a nap every single day of her life. My Mom never put a name to what she had so I grew up not knowing what she was dealing with till I got the dreadful diagnoses!

Today, I wouldn't know how to deal with an uncaring spouse.

For those of your dealing with this, I feel so sorry for you that you have to deal with an uncaring spouse or one that lacks any understanding AND dealing with this unpleasant disease.

Gosh Energylost... ..

Your mother's story is so heartbreaking. It really hits home with me. My kids constantly ask me EVERY day, "are you feeling better yet, mommy"? "Why can't the doctor's help you"?

It's devastating as a parent to feel like you are putting your kids through this. I'm sure your mother felt the same way. She sounded like a very brave and caring person. Putting you first even through her suffering. What a great mom!

What MB says about the family feeling helpless is spot on. At least in my case. I have been sick with this for 5 yrs, the past 3 being the absolute worst as the symptoms have gotten worse over time. Fortunately, my family has recognized how much I suffer. They can just see it. They have all stepped up to the plate to help. My kids make their own school lunches, make their beds, and feed the dogs. My husband helps out more around the house. I don't have to ask......they just do. They know I just can't!

It was their struggle with my illness that prompted me to seek help from Hotze. As you probably know, the Hotze clinic is probably the best in the country. Thyroid is all they do. They have treated more than 30,000 people! They are quite aggressive in their approach, raising doses every few weeks. They get the job done. As good as they are, they told me that *most* of their patients don't notice improvements until month 6! SIX frickin months! That's just an average......it could take longer!

With most other doctors, it probably takes longer. This is why we all urged you to line up a bunch of doctors to get going on this. If you choose Hotze, it's probably only a 2 week wait, but you'd have to book a flight and the expense starts to add up. But......he'd take care of your testosterone too. In any case, you are most likely looking at 6 months to a year *after* you pop your first thyroid pill before you feel any better! Your family will need to be patient!

UG-- you have been very fortunate with your family stepping up and understanding. I am so happy for you.

energylost--

What a tragic story. What a wonderful mother you had. I wish I could have the same. Even my parents think I am delusional and hypochondriac, I have absolutely no support from anyone except on this forum. Most of my friends also think I am a "little crazy" being sick for 8 years. Just cant win this one.

GageL......

My father and his wife told me that it was just perimenopause and to just deal with it! Great advice coming from.......a dentist! I told him to shove his root canals where the sun doesn't shine! Lol.

Some people are idiots!

My wife hasn't just come right out and said I was a hypochondriac, but I think its on her mind. She is an amazing mother and I think at times she's trying to be as supportive as possible, but to me it seems most of the time she's almost uninterested when I try to talk to her about it and figure out what to do next.

I'm not even going to start on the rest of my family, lol. I know for a fact they think it's all in my head and I should be able to just not think about it. My sister has actually told me that I dwell on it too much. Yep, when you feel like you're dying, your probably going to dwell on it some. Oh well, thanks for the replies everyone.

I don't think people understand that you are not trying to dwell on it, but yet it has just consumed your life. You are searching for answers and would like to tell the people that you care for that you a trying to do something about it. Too many people look at your behavior and complaints and can only think that you are attention seeking. They think if you went to the doctor, you should feel well.
I was dating a man that I have known for years and he thought that when I got the medication I should be good as new in less than 2 weeks. I got tired of telling him...and now I don't. We don't date anymore, but he's a peripheral friend.
I don't discuss hypo with anyone that can't be supportive. I don't deal with their criticism, so I don't put it out there to be criticized...
I can relate to a spouse not understanding. My mother was hypo and then later had problems with her eyes. My father was not supportive at all. He told my mother that if she went blind, he would leave her.
Perhaps this is why I am not married. Those role models die hard...
I would sit down with your wife and explain what you are doing and what you want and if she can't be supportive, don't talk to her about it...It's funny that I say this, because I am really behind good communication, but I have found this to be the path of least resistance...Then (you) I am not angry or frustrated anymore, because I didn't have the expectation of support....
good luck - hang in there!

jwlee

You will need at some point to have the discussion with your family about this disease, honestly and earnestly. Either they accept it and you're health condition or they dont, then you need to make your decision about how to deal with them, good or bad. Or maybe positive or negative are better words.

UG

I had to finally tell my parents to shove it. They have harassed me for far too long, called me neurotic (I HATE that term), hypochondriac, unreliable, a bad father and husband, you name it, they have accused me of it. I finally 2 years ago told them to shut the eff up and never speak to me again. And we have not spoken since and it makes me feel much better, they are ass***** (Luckily they live across the pond). The pressure got too much to take whilst fighting this hideous disease so bye bye.

Sometimes we must cut loose. No chance for recovery without doing so in I am going to guess more cases than we know about. You can't be stressed out all the time and expect to recover from thyroid/adrenal disease.

StilListing

Relate to all you say and then some.

I think the psychological and emotional aspects of this disease are mostly if not always ignored. I would like to start a support group about that reality in itself. This is a disease unlike most others in its implications. Its silent, most of the time it does not show, doctors know sh** about it, meds dont work most of the time, we are not getting better, and our lives fall apart. If anything deserves a support group, this disease does.

It's said that each one of us is defined by our relationships. Using this definition, the woman I married more than 20 years ago is (in order of the effort she puts into each relationship): corporate warrior, mother, daughter, sister, friend, co-worker ................................... wife.

Other than the fact that her employer's insurer picks up most of my medical bills, I get zilch support from her. Sent her web links about our condition and she doesn't even bother to open them. Ditto books. Doesn't ask me about the outcomes of my visits to the endo either. Snapped at me for forgetting to turn off the tap and air-conditioner. Even barked a "What's wrong with you!?" when I felt dizzy and almost fell over at home.

I've kept my end of the "for better or for worse, in sickness and in health" vow. Nursed her back to health when her kidneys failed three years ago. Even offered one of mine (rejected on account of my cancer history). To me, life is not a debit-credit thingie but her indifference to my condition is real unfair.

My wife and I have been together since we were children, 11 And 12, she is the love of my life. But no matter how much I try, either by being silent in the pain or explaining what I'm going through she is over it, helpless. I understand her position and it is horrible, as is mine. I told her this morning that I have Cancer. She looked at me as if I were greatly exaggerating. "Worse than Cancer." She looked at me confused. Cancer is the worst. Wrong. Not trying to compare. I cannot do anything right. I am so sick. I have a disease! There is no support like people with Cancer, no messages from family or friends. I, we are left largely alone to face this most perfect disease if destruction of the whole picture of soul, body and person is what is desired from whatever source may it rise: be it God or Nothing.