I am a Graves patient who started to slightly go hypo, based on FT4. It was 1.1(.7-2.0). I felt awful and begged for help. My endo prescribed the smallest dosage of Levoxyl(25mgs).
My depression disapeared! I do feel much better in that area. Brain fog too.

So, I had a appointment with the most renowned endo's in my area NP. She confirmed the Graves, per antibodies. She said that I will probably end up off of the Levaxyl and back on Tapazole.

KILL ME NOW!

In my almost 3 years since my Dx, I have gained 19 pounds! 19!!! This is with diet and exercise. I have not an ounce of weight in 3 years.

I am si scared that I will end up back where I was before I busted my hump. I lost like 40 pounds before my dx, through diet and exercise. I am HYPER!!!!!!! For Christ sake.
They don't understand how my numbers indicate Graves, yet my symptoms tell a different story.

I just looked up the ICD codes and they have the thyroid code as well as weightgain, AND nuerotic depression. NICE

I think that I am gonna opt for the RAI. i can't do this any longer.

I gained weight with Graves too. Fully hyper symptoms and I still gained weight. I was ravenously hungry all the time. Is your graves in remission now, i.e. no hyper symptoms? I'm not positive what happens with TSH and other "standard" thyroid tests when graves is in remission.

What are your latest thyroid numbers? Are they testing Free #'s or just totals?

I wish you luck. I can certainly understand your frustration.

I started to move toward hypo, just a bit, despite a low dosage of Tap. That was in June. We suppspend the Tap and I continued to move. FT4 was 1.1 at that point. I convinced the doc to give me the T4 and it was 5 weeks after that dose(25mg)

TSH: .02(.3-5.5)
FT4: 1.5(.7-2.0)


Thing is- I do not have ravenous hunger. I do not have palps. I do not have tremors. I NEVER did.
My hair is falling out in clumps, and my legs kill most of the time. I just do not understand and I feel totally and completely helpless. That this is out of my control.

This new endo uses the 2 year rule when treating with Tap. One year to get to optimum, then another to maintain that optimum level. I can't do this another 2 years. Deny myself and suffer, YET still gain?? They are baffled.

I am having repeat abs done, including chem screen, cortisol, FT3, insulin, Ft4, TSH, TSI and thyroid perioxidase.



I am so scared.

I have to assume they're giving you tapazole because your tsh is lowish. However, your FT4 is looking pretty good. I'd be real curious as to what the FT3 is doing.

Have they looked at insulin resistance, PCOS, that sort of thing for the weight gain?

What is your doctor's rationale for taking you off of synthroid and putting you back on tapazole when your numbers don't really indicate you're out of range? Maybe she's just saying that she would expects your graves will flare up at some point in the future.

You know, you can always change doctors. How'd you pick this endo you current have? I'm not a big fan of endo's for thyroid. You check Mary's list or look for a support group for Graves patients on the internet, I have run into them, and try to get some feedback. It might even be worth consulting with Eileen Moore, a medical technologist and some who writes about Graves a lot. Look her up on Google. She might be able to put you in touch with a better doctor or at least give you information and questions to ask your current doctor.

I had Graves too but I got talked into RAI really quickly so I didn't experience a lot of what you're going through.

I found this endo from the Top Doc site at Mary's. This is my 3rd endo, the last two were from that list.

Yeah, I think that the idea of my going of T4 and back to Tap is because my #'s were not that hypo.

Thing is, this is a second opinion doctor. My true endo called yesterday to give me those numbers. Their advice was to continue the dose of T4. Prior to when I started the T4 and for being OFF of Tap, my TSH was a .12, and the FT4 was a 1.1, same ranges. I though that some of the weight gain was from that, but I don't know.

I could kick myself because I called my Endo 1(the regular, not second opinion) and requested a FT3 be ran, and she said to fill it in on the slip. I forgot!! Damn.

I don't know what they are figuring for the weightgain. They are checking insulin, so maybe PCOS? I don't know. I don't have symptoms(no weight around my middle or weightloss when I cut carbs).

I am just a mess. I really don't think that I can go back on the Tap and risk gaining wieght.

Thanks for listening. I really thought that my depression was better. I still do, but boy, it's been a tough day.

I was treated for Graves' in the mid-late 80's (I went the PTU route). I never lost weight or had energy. Now, all these years later, I'm taking armour for underactive thyroid and find out that's common with Graves' because the hyperactivity burns out the gland. I was told at the time the treatment was finished that I wasn't just in remission, I was cured and not to expect any problems in the future. Also, I just started isocort for adrenal support. Thyroid and Adrenal problems seem to go hand in hand. Hope you get the help you need. ~Gail

Have you been tested for other possibilities contributing to your symptoms? I had Graves also and it wasn't causing me too many problems the first few years..I just took PTU to clam down my thyroid when it was overactive (usually during stress). All of a sudden my symptoms got BAD and the PTU wasnt helping anymore...I was desperate. I was also gaining weight but it was a good thing in my case (I was always skinny). The headaches and pain were killing me though. I wanted RAI...thinking it would end there. It didn't and I only got worse. I spent over a year adjusting meds (even though labs were normal) because I felt miserable EVERY day. Couldn't work either. Finally since noone was helping me I decided to treat myself for Candida and I was feeling tons better cause of the diet change but still was having too many bad days. I was finally (after 3 years of constant depression and misery) diagnosed with Celiac Disease. Its another autoimmune disease and since my symptoms could also fit into the autoimmune thyroid catagory I had just assumed that was my only problem. Now I sort of regret having the RAI done since my thyroid wasn't really the cause...I guess thats why the PTU wasnt helping. Oh well...can't change it now...hopefully I'll just continue to take my Armour for life and never have anymore autoimmune problems.

-Rachel

What are the symptoms of celiac's?

There are actually over 200 syptoms for Celiac. Its a common disease...maybe just as common as thyroid or diabetes but its highly underdiagnosed. My doc said its on their top 10 list of undiagnosed diseases
because the symptoms vary so much from one person to the next and they have a hard time diagnosing it. I saw every specialist and probably had close to 100 doctor visits but noone ever suggested Celiac. I found out about it and got tests done on my own. My doctor was very apologetic (they treated me like a hypochondriach the whole time). Now I'm finally being treated decent and he said he's going to find me a specialist to help me....they also sent me to a dietician. Anyways my symptoms were:
Fatigue (most common symptom)
Depression
Crying spells
Hair loss
First weight gain then in past year dramatic weight loss
Brain fog
Blurred vision/dry eyes/burning eyes
numbness/tingling in hands feet and face
fluid retention
constipation
inability to concentrate
memory loss
muscle/joint pain and stiffness
bloating
dry skin
feeling cold
night sweats
food and chemical sensitivities
swollen glands

and those were just my WORST symptoms...it was a really rough time.
Most of those symptoms could fit very neatly on a Hypothyroid symptom list so for the longest time I thought thats what it was since I had RAI done.

I guess I just associate Celiac's whit the gluten intolerance. I never have trouble eating carbs.

Yeah...I don't have a full understanding of the disease yet myself. I never even knew food was a problem until a dentist told me to change my diet cuz I might have Candida. Once I started messing with my diet...I would feel better some days but then bad again...the reactions became more noticeable...probably because my body was trying to heal but then everytime I had gluten..Bamn! I got sick...but the reactions are delayed so it was hard to figure out...plus one day I could eat pizza and be fine and another day eat pizza and a few hours later be exhausted and crying from depression. It was total confusion.

What is Graves?

Graves is an autoimmune disease where your body produces too much thyroid hormone. You get hyper(too much)thyroid. Eventually it often goes into remission but I believe I've heard that usually it leads to hypothyroid (too little thyroid) later on.

Apparently smokers get Graves disease a lot. I was a smoker when I got it. They think it is the arsenic in the cigarette smoke that hurts the thyroid.

Google it!