Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
So got "test results." sort of. Getting actual lab values out of these people is like pulling teeth from an alagator! They seem like they mean well though. As many of you know, I often post labs here without a reference range. It's not from lack of trying on my part. The office nurse called yesterday with my most recent lab results. Should've been a FT4, FT3, and a TSH. She called and said "good news, your levels are almost normal. so he says to continue the Methimazole at 20mg." Which I've been on for about 3wks.. I said "Oh good, what values are they?" She said "uhh, it looks like your level was 4.8." I said "good what's the reference range." (something I couldn't get last time.) she said "it says 2-4.4" I said "Great!! what test is that exactly? Is it T3? or T4? She giggled and said "Oh, I don't know..ha ha ha, someone put a punch hole through the top of the paper, ha ha ha." Now I ask you, how do decifer that!!..Any advice...well atleast I'm almost normal..I guess.
Closest in one common FT3 reference range of 2.3 - 4.2. I have that noted for several trusted people is the USA.
So... IF that is a FT3, you are past time to have lowered the 20 mg. dose.
FT4 comes down first... dose is lowered once it comes into the ref range. FT3 follows later. Since there's always the possibility that one could be a rare exception , you need the FT4 result.
This is a good story though. Good grief.. they pay that person ?
Are you sure she's a nurse ?
The thing is, symptoms often lag behind, both going down and going up. So lowering the dose at the appropriate time is preventative maintenance.
As in better to be on the right dose for current labs and prevent dropping to low and not catching it by symptoms alone. Then the patient spends months trying to climb up out of the hypo rabbit hole, and at the same time trying to do the adjustments needed at the time. symptoms and labs are hard to compare in the best of circumstances when new to the game.
And just to add to the fun ( not) during the time spent at thyroid levels too low for our individual needs.... the gland swells in an attempt to correct the problem. The increased blood flow allows the antibodies to increase. ...the opposite of our goal.
Also other body systems are damaged anytime we are too hyper or too hypo.
Hyper bone loss and heart problems.
Hypo bone loss and rising cholesterol.
Common problems are also muscles.. hyper muscle wasting..
hypo weakness and carpal tunnel. ( me.. sports injuries while sitting on the couch ! My muscles were not strong enough to support my joints.. what a mess )
Mental.. hyper anxiety and being in too much of a hurry and making mistakes.
Hypo cognitive difficulties , mistakes, depression and panic attacks.
Hyper.. trouble getting to sleep.
Hypo...waking many times during the night.
Hair loss.. hyper AND hypo.. but most importantly it is a delayed symptom.
If I was dropping down.. then caught it and adjusted my dose soon enough, the hair loss would start shortly AFTER I had adjusted my dose. Hair regrowth is also delayed in recovery. Once hair loss starts, count thee months of good levels and you will start to find many happy new baby hairs all over your head.
There are more cross over symptoms but that gives a bit of an idea how difficult it can be to identify if one is hypo or hyper.
Say I'm tired, weak, making mistakes and grumpy. Am I hyper or hypo ? Either could be correct.
After we gain experience , we find little symptoms that are unique to each of us, that are either hyper or hypo, just to reassure you.. this is not a long, endless disease of confusion. ;).
I have only two things that I can consistently count on and I've not seen them on a list.
Finger and toe nail growth. Hyper I have to trim a couple times a week., in fact at one point I need to trim my finger nails every other day, while doing the right and left foot every other night. . Hypo I can go a couple weeks and only trim because they are starting to grow. Thanks to genetics I have really strong nails, so I need to stay on top of it, or if caught on something they pull off my body, but don't break. That really hurts ! Yes.. I'm even a bit jealous of those that can break a nail. A nail pulled partly off hurts for a long time.
Handwriting...this is my biggest one.
Hyper I write tighter and smaller.. straight up and down letters, and hen more hyper I black print in teeny tiny, perfectly formed block letters .. same as I was taught for blueprint work.
As my levels drop, my writing gets looser, more artistic, letters round out, and I add lots of swooshes..
Hypo and my letters start to slant to the right... further and further. Letters become narrower and longer. Then the carpal tunnel sets in and eventually the pain was so bad I had great difficulty holding a pen.. and my signature was rather X looking. Barely legible. I have notes I wrote to myself at that time and I have to guess what was written.
Wait.. come to think of it.. my kitchen sink went through changes...I wonder if the condition of that sink would have matched up with my levels ? Hypo to tired to care... LOL
Bottom line.. you can't do this right without copies of your labs. They are your legal right.
Too many have doctors that push them too low and say any problems are not thyroid.
Some try on their own to correct that, but without labs.. big mistake.. there will be errors and eventually that person gets tired and blames the drug..
Both types are prone to then run to permanent treatment and for the rest of their lives believe that drugs are bad. Unfortunately those same people are going to have problems with the replacement drugs.Often those problems are then given a different diagnosis, due to the lenght of time the problem has existed and because it is obviously not thyroid..because the doctor said their levels were good. :(
No matter what treatment you end up choosing.. this time on ATDs is your opportunity to learn YOUR best levels. It's easier and faster. And if worst case... we are overdosed.. we can make intelligent decisions and save ourselves while we find a better doctor. We can make a change in 2 weeks, feeling a bit better the first few days... they need 6 to 8 weeks for the same change. Yet another reason you need those darn lab copies... time wasted till you find away.
I know you have tried..and I feel for you. But you still need to get the copies. I've had an office where it was hard.. I took my knitting, told the front desk gal I needed copies of my lab work for my records and I would wait. I then sat directly , dead center of the middle of her view of the waiting area. Worked at not giving her the stink eye, but nicely caught her eye a tiny bit now and then, I smiled long enough for here to remember why I was there, and then looked back down at my knitting. My tactic was that she and I were on the same team, she was the one to help me, and I knew this was frustrating for her too. Sometimes you have to think creatively.
You will save yourself more that you can ever imagine. I found my early years and not understanding, things built up, and then like dominoes, my life slowly started falling apart. That's the reason I'm here. To try and prevent others from the same situation.
Pam
Glad to hear you think that you are "normal". Can you just go to the labs where you get your labs drawn? That's where I go. I just show my ID and ask for my labs. They can NOT refuse you. You OWN those numbers, you payed for them.
Good luck in getting better. And I am still waiting for pictures in the Drive Thru LOL! I told your stories to some of my hippy friends and they thought you were worthy of an award! It is even funnier now that I have that avatar stuck in my head as your "picture".