When I got sick... IMO

[teacups]

I have just stumbled here this morning... and have read a lot and posted a couple of things. Then I got the idea that this may be the perfect place to try to put into words when I think I got sick, as the doctors I have been to do not seem to see any relation.
Background: I had always been healthy, even though I toasted my thyroid away with radiation when I was 20, and had been on replacement hormones since, and have had three kids without trouble. I had always been strong, phyically fit, a little cocky (aka: big mouth!).
None of that is me now.
OK, fast forward. My brother was DX'd with cancer, actually four cancers. He had 9 months of illness, pain and chemo before it finally took him. I held up as well as could be expected, until he actually passed. In that ONE WEEK I gained over 25 pounds and totally crashed emotionally. There is alot more background I could go into but wont right now. In the weeks that followed, I gained another 25 lbs. I am still 50 lbs overweight. Other things started: This unrelenting fatigue. It is so severe that I have often thought I'd die in my sleep. I am so tired breathing wears me out. 3+ years later and im still dealing with this and now its worse becasue of the frustration. Depressed? Oh sure, but I honesty think its something more. The depression I feel is from how I feel. I fear I have something that these doc's are not looking for because they think it's "just depression".
Has anyone heard of any illness/condition that can actually begin from stress and then grab hold? My doc's said, "wow, you must have been eating 24 houtrs a day to gain that much!" I think they believed I was exaggerating, and I want to say I AM NOT. I actually put on that much weight in that short time, and no, I wasnt eating like that. I have three kids, two are little ones, and I honestly dont think I will see them grow up! I went to Disneyland for the first time last year becasue I thought I was going to die, and wanted my kids to have that memory of me (going to DL) ... which is how I stumbled across this board.
This is really getting the best of me. 3+ years is a LONG time. I know others have it worse, and are living in horrible pain, which I am not...but the really bad thing is the self talk! Its so hard to be the sick one who ruins everything for the rest of the family.
Forgot to add: The first year I had giant hives all over my trunk. Test after test after test.... they found nothing.
I read about an anti-fungal gel that someone used on their feet for body hives. I tried it and darned if it didnt get rid of those year long mystery hives!!!!!!!!! And yet still, the doc's cant find any relationship with all these symptoms. I never had any visible foot fungal thing either. Weird, huh?

 

[Mackey Mouse]

Hi Teacups... welcome to this board..

Thank you for your nice post on the other thread and let's see if I can make you feel better here, maybe just a bit..

I think I read that you have no thyroid and take thyroid hormones.. Are your levels where they should be? Are you being monitored by an endocrinologist and not just your primary care doctor as this whole thyroid thing is a big deal and can lead to so many things if the levels are not correct.

Also, reading about losing your brother, that was a lot for me and I do think that could put anyone into a tailspin. Do you notice that you are more down during the winter or is it summer as well?? Also, have you ever thought of maybe talking with someone about how you feel?

Have they done tests on your?? Blood sugar etc.. just really check you over? Sometimes I think when they cannot find something, they tell you it is in your head... maybe it is chronic fatigue syndrome.....have they looked into that?

Just know that we are here to listen when you need to talk.. I hope that others may have some more ideas for you..

Hugs..

 

[Fan2CSkr]

Did you have your thyroid ablated due to Graves? What is your current thyroid replacement dose? What do you take? Your symptoms are classic for being hypo and perhaps even severely. That in itself can lead to a host of other medical issues. Have you recently had a complete thyroid panel done? That would be a great place to start. Make sure it includes free T3 and free T4. TPO and TSI antibody tests may or may not be helpful as well depending on your dx.

Acute giant urticarial reactions (giant hives) has been linked to hypo thyroid as well.

I'm glad you found this place it sounds like you have been through too much already. I really hope its the beginning of you starting to get well.

 

[teacups]

Yes. I was DX'd with Graves on my 13th birthday, and had RAI at 20.
With this thing I have going on I also suspected under treatment... but all tests (and I insisted on ALL) always showed very mid range. I then insisted my doc push my meds, becasue like you say, all these signs point to hypo, but then I ended up Hyper and recalling my Graves Rage days...not a safe place to be for me or anyone around me! I had to back off the meds... now I show very mid range again, maybe dipping just a tad below mid. Im on 120 armour, or 2 grains. I could maybe nudge that up a bit... but even at a high dose half nutz with rage, I was still having this unrelenting fatigue. I feel so "broken" now and dont seem to be able to find that fight anymore.

 

[jann1033]

you can get cfs after any kind of stress including illness or emotional ( viral illness is more likely but some have gotten after situations like yours) check out this site and see if you have any of the other symptoms. some drs. have found adrenal problems and i think feel some kind of stress is somehow a connection to and they have found some kind of altered gene associated with stress in some with cfs.
fatigue from cfids/cfs is like mono x 50 and then some, unrelieved by sleep and worse after exertion ( IE not proportionately so but as in you walk for a mile and are in bed for a week)
http://www.cfids.org/about-cfids/do-i-have-cfids.asp
one thing they have to rule out is thyroid
every single time i have a flare up i gain 20+ lbs in a short time without eating more( in fact once i did while throwing up the whole time as i also get nauseated) they think it's cause of hypothalmus, some gain ,some lose, just not normal either one. i also get giant hives, like drs freak out when they see me :0:0:0...that was the first symptom i had when i got CFS and allergy testing didn't find any cause for it.

 

[Mackey Mouse]

This thyroid thing is difficult.. I watch my daughter with her thyroid issues....she has none and relies on a prescription to produce her TSH.....I think you need to see a specialist if you are not already.

Seems that even with them at a normal level , you are still suffering symptoms and that is not good..

I am glad that there are others out here who can talk the talk better than I and I would listen to them and ask questions of your doctors..

I can only talk it as a Mom who went through thyroid cancer with a daughter and how we live with it every day......she is clean of cancer, but the ramifications of no thyroid are always there.. always, and the list is big.. She is an adult and takes care of herself, but as her Mom I notice when she is not feeling right... feeling good.