I need to vent, maybe other people have dealt with families who don't understand?

[nicolelm]

Extremely long story made short: There is an even that I have to attend. It's going to muster everthing I have, but I have to be there. I need to go to a store and purchase an outfit for this event, and so I spoke with my sisters. We made arrangements to go to the local mall, 5 minutes away. It's very small, one level, maybe 30 stores. Healthwise, I can just do that.

I wake up this morning to siblings that want to go to this gigantic mall an hour away. I can't do that, it's 3 levels and a few miles long. I've been there before, and I have to sit on a bench whilst everyone else runs from store to store. Since I can't go here they are going without me. I can't get them to understand that even if they slow down with me (which they THINK they do) I still can't do all of that.

It ended up turning into an argument my father decided to start. He kept yelling " You have to learn to keep up, bend a little, push yourself to your max. You can't always expect everyone to want to go at your speed or to where you want to go."

That really hurt me because that is ALL I do. I am constantly on a bench somewhere while everyone is out and about. Because i pushed myself to this gigantic places, I can only sit. When there are BBQ's or events, I try , I push myself, I try to adapt to keep up with the"healthy" ones.

But NO ONE ever SLOWS down for me, or goes to my level. Or does anything to make it easier for me. I feel like I am always playing catch up and by the time I get home I have to rest at home for a week. When I try to explain these things (as if they can't see them for themselves) I get the "be like everyone else" speech. Or the " you can't expect them to always slow down for you" speech. Which just tells me they don't listen to me, because I am not asking for ALWAYS, I couldn't do always. I am asking for the once in a blue moon.

So now I can't attend this event and everyone just thinks it would be better if  I just rested at home, since if I'm  too sick to shop, " i should feel better at home."

I am so done.

[flyingfool]

I'm the opposite.  I'm the husband who has to essentially force my wife to do anything to get treatment for thyroid.  She was perfectly happy being a cranky butt who just wanted to sleep 20 hours a day.  She just wanted to be left alone.

I've always been accused of being "different". I guess this was just another one of those times where I didn't fit the mold of a "typical" husband.

Oddly, I'm actually not very empathetic. But for some reason with thyroid condition, it was me who did the research and figured out and persisted on my wife getting better treatment.

[Lros305727]

My favorite was the first dr that, after 6 mo of treatment asked me how I felt.  In tears I explained how things were so much worse.  She looked at her folder, said my th level was normal and it wasn't her problem.  She was right....it's no longer her problem as I dropped her like a hot potato.  A bad dr for sure.

[nicolelm]

I'm glad he is Barb.

The good thing about me being so sick right now, means boyfriends are out of the question. So when I do feel well enough to date and marry I can look for a supportive person. Instead of me being with someone, then getting sick. So at least that is a bonus to my situation now.

[Barb135]

Just to clarify - my husband was not very supportive when I was going through the worst of my hypo, but even though he still doesn't understand exactly what it's all about and why I get so tired, can't lose weight, etc, he's much more supportive than before.

Stuffie - of course, this could be a never ending thread, because we've had tons of members who have gone through the same things.

I don't think any of us would wish a thyroid condition on anyone......

[Stufftie]

This would be a never ending thread of we all chimed in with heart breaking one liners from not only friends and family ~ but doctors as well!

I don't wish my thyroid past on anyone.

My all time favorite from a doctor - During my last miscarriage "It is 70% not viable" then sent on my way...

Throughout all this I am stronger, more understanding of others troubles, and knowledgeable about my own body.  Things are looking up!

[nicolelm]

Thank you Barb, I am trying to look at these nodules as a good thing. I am starting to feel that now may be my time. From this point on I might actually get better and join the living again.

I'm sorry you're husband isn't supportive.  But you're right, it's hard for those who are well to understand. Out of nowhere, a few months ago, I felt like I was on cloud 9. My energy was up and I just felt normal. It hit me then that no wonder they don't know how I feel. When you are feeling great, it's hard to imagine otherwise, unless you feel it too. So I am trying to look at this situation on both sides now.

I'll try not to fret about the biopsy. I hope you are right. That is a nice statistic though, so that puts me in a good mood.

Well, it turned out that my sisters did go to the big mall, and I stayed home. But they came back early and asked me if they could take me somewhere closer. After getting my tests results, I think it finally hit them what I am going through. Now everyone is looking at me with sad eyes lol. I got worse today and didn't leave the house. But my sisters went out and picked me up a beautiful peachy/coral maxi dress. So I feel good about today. It all worked out in the end.

Thank you for being there Barb. And I will definitely post an update. Should I post it here in this thread?

[nicolelm]

Stuffie, I am sorry to hear what you are going through. It's just so terrible to be a room filled with people and to feel like you are the odd one out, and will always be. IT shouldn't be like that for you, you should have somebody. I'm no expert at this illness and how to handle it with people, as you can tell, but maybe it's time for a new friend. Someone to understand you. Don' forget, we are always here.

[Barb135]

I can't say I'm surprised about the nodules - I mentioned those in my post above.  Under the circumstances, maybe you should be thankful for them, because your doctor has finally acknowledged that there truly is something wrong and is willing to try to find it, now.  I'm guessing your antibody tests will be positive.  Make sure she does both, TPOab and TGab; without both, you could be misdiagnosed.

Hopefully, in view of the new findings, your family might change their attitudes a little bit, as well.

Unfortunately, my husband was a bit like Stuffie's and in his eyes, staying home from work for something that wasn't "obvious" (like a broken leg or a bad cold), just wasn't an option, so I dragged myself out of bed 5 days/week at 3:30 am to go to work, plus I had an elderly aunt who took up a good share of my weekend, then eventually came to live with us, along with my own cleaning, yard work, etc.  Like I said in my first post on this thread - that's just the way people are and we can't change them.  We do the best we can to get by and move along.  Harboring resentment is definitely counter productive and does nothing to help you get well. You'd be surprised at the number of people who don't even know they have a thyroid, let alone, how important it is, to their well being.  I was diagnosed over 5 yrs ago and my husband still doesn't understand what I went through, because I eventually stopped talking about how bad I felt and concentrated on getting through the days. He never went so far as to research hypochondriac (to my knowledge), but the look on his face often indicated that's what he might think. He didn't understand what I was going through, so it was easier for him to think I was dramatizing, or to ignore it.  Even now, when I have, the inevitable, bad day, I get "the look" that makes me feel guilty, like I'm being lazy. Like Stuffie's husband, mine is a good caring person; it's just that he's never been through it, so  he has no concept.... just like I've never had cancer, so while I can empathize to a certain extent, I've never been through it, so it's foreign to me.

Another positive, for you, in this, is that less than 5% of thyroid nodules are anything to worry about. Don't fret the biopsy.... it'll all be okay.

So now, I'm curious -- how did the day go?  Did your siblings go to the larger, farther away mall?  Did you end up going with them?  Did you get an outfit for the "event" that you have to attend?  Don't leave us in the dark.

Be sure to keep us posted on the upcoming tests, etc.

[Stufftie]

I completely understand your frustration.  During the school year I walk with a neighbor twice a week.  Initially I thought I just needed to get out and moving to feel better.  As time went on and the more knowledge I gained about where I feel optimal with T3 and T4 I realized it wasn't because I was not active enough - it was that I had nothing more to give.  
I tried to "break up" with her several times - "How about we take it slow" she says or "I forgot to tell my daughter we were not walking and she is crying"  I always gave in.  While walking I would hide the limp from my painfully cramped legs.  Afterwards I would crash on the couch until my daughter returned from school.  I became angry at her for taking what energy I had and left none for my child. I would push through - like I always do - and suffered the physical consequences later.

This post would be way to long if I even began to talk about the issues my husband and I had while trying to figure out what was going on.  I am working hard at letting it go by trying to see it from his side.  Over three years of physical pain and exhaustion because my doctor was an idiot!

I wish I could look back and say he was there for me in sickness and in health.  But I can't.  He sees the difference now being on the right supplements and (FINALLY) correct dose of thyroid hormone.  I am back to my old self.  Which I find crazy that he forgot in the first place.....I will say at one point he decided to have a conversation -because this is the one thing he did research - hypochondriac.  I was p-oed! I don't fuss over any type of scratch or bump.  My complaints were exhaustion, throbbing headaches, migraines, light headed, severe muscle cramps-that he would try to massage out, even he felt the huge knots that brought me to tears when touched.

He says he knows better now....He is caring, sweet, and a great Dad...But when it comes to something he can't see, it must not exist.  Breaks my heart. I just hope that if I hit a bumpy road again that he will be there for me.  I am working really hard on forgiveness.  

He still says things that hurt my feelings like-when the doctor found central sleep apnea. We were in Texas and I felt great! After we returned home to our higher altitude I felt terrible again.  My doctor began oxygen at night to help with that.  My husbands answer to why I felt better in Texas was because "I had to"  My answer is that I can feel my head throbbing and the muscle cramps, I know my brain doesn't say 'She has to do this, so don't hurt today."

I don't know if we can ever change the mid of people.  I think we just start to choose who we can be around when it is bad.  Which the list is tiny in my world and it saddens me.  That will never change who I am.  If someone is hurting or going through a hard time.  I am there.  I will take the kids overnight, put dinner on your doorstep, or your favorite movie and vitamin water on your doorstep after surgery.....I don't ever ask for the same-but it would be nice.  

[nicolelm]

My doctor just called with the results. They found 9 nodules, all on the large side, and one that was a little over 1 cm. I have to now go to an ear, nose and throat specialist to get a biopsy to check the pathology.

Because of these findings my doctor is now willing to test my thyroid antibodies. She told me that my thyroid function is most definitely impaired from the nodules. I was so happy to hear her say that....but very much freaked out about the biopsy.

[Barb135]

Can you refresh  my memory and tell me whether or not you've been tested for Hashimoto's?

Most of us have had an enlarged thyroid, at one point, or another in our journey.  It can cause discomfort, but is almost never anything to worry about. Nodules are also very common, so don't be surprised if the u/s shows those, as well.  Enlarged thyroid with nodules is consistent with Hashimoto's. Some studies have indicated that selenium can help reduce discomfort from a swollen thyroid, as well as help with the conversion of FT4 to FT3. You might  discuss this with your doctor. Will be interested in the results of your ultra sound.

What  happens if you take a lower dose of the vitamin D? It could be like thyroid hormones; if you bring your levels up too quickly, your body can't handle it, but if you bring them up gradually, only increasing when you've gotten used to a dosage, you might be able to do that.

You should get your B-12 tested again, after supplementing for a while to make sure your supplement is actually working.  Some people don't absorb B-12 well, so no amount of supplement will help.  I'm one of those and have to self-inject on a weekly basis in order to keep my levels high enough to be able to function well.

[nicolelm]

Thanks Barb- I appreciate your words, they give me a lot to think about.

my medical history is a bit complicated. I never had my FT3 done, which I am hoping to soon. My TSH was slightly high which started me on thyroid medicine to begin with, and my thyroid feels enlarged so I had an ultrasound done the other day.

As far as the vitamins go, they are within range, but on the lower end. I am working on raising them more to see if that helps. Vitamin d is a story of it's own- it is low and I have been on treatment for 12 weeks, the 50,000 I.U's, but when my levels rise they make feel like death. So weak i can't even talk. It doesn't matter what form, d2, d3, or cod liver oil.Sub lingual, no additives...yadda yadda...Whenever my d levels rise, I get sick. So i unfortunately have put that on the back burner since my doctors don't even know why.

[Barb135]

My first thought is to let them all go to the large mall and you make a short stop at the smaller, closer one to get your outfit.

I don't recall all of your details, but it seems that your actual thyroid levels are very good, so I'd tend to think that your symptoms could be caused by something else. Vitamin D and Vitamin B-12 deficiency can present the same/similar symptoms, as hypothyroidism, so you should certainly have a look at those.

All of that said, I can understand your frustration, but the truth is, Hashimoto's/hypothyroidism, vitamin/mineral deficiencies, etc all cause horrible symptoms, but they aren't something people can "see", so they tend to be discounted.   For instance, if you had a broken leg in a cast, everyone would understand why you don't want to go to the larger, further away mall, because obviously it would cause discomfort to be on crutches that long.  Chances are, they would opt to go the smaller mall with you, or they would rent a wheelchair/scooter for you to ride in - which, by the way, is an option. But then, sitting on a bench, at the mall, can be quite entertaining.  There are people of all types to watch and wonder about. LOL

Illnesses that are "invisible" tend to bring out the worst in healthy people; they tend to think that anything that can't be seen, doesn't exist.  It's hard to understand how someone could feel so horrible, they don't want spend the day at the mall...

While my illness never kept me home from work for a single day and I kept up with all my obligations, it was often a struggle and invariably, I crashed the minute I could.

I'm sorry your family members are being difficult about this.