looking for anyone with congenital hypothyroidism

[juliarees82]

Just to buddy up with and share experience and advice....

[Hidden]

Hi Julia, I was diagnosed when I was 28, but my endo said from my history it sounded like it was congenital. I'd be happy to buddy up with you :).

Cheers, Kat

[Hidden]

Hi I've actually been hoping to run into someone with congential hypothyroidism. I was born without a thyroid gland. I'm new to this site and as long as ive had this disorder I'm still learning about it. Growing up my mom didn't much about it but just always stressed to me how important it was to take my medication. I'm 36 years old have 3 children and for some reason I felt these last 2 years after I had my daughter is just never felt right. Sleepless nights, stress, depression, anxiety. I don't take medication for the depression but I'm giving it time as I just switched endos. My last endo was seriously overbooked with patients and looked tired and exhausted when I would see her. Didn't take time to talk to me, just sent me off to labs and went by my results. I went to see an new endo, who told me my dosage was to high for my weight, I never knew that was they went accordingly too. I was at that time 132lbs at 200mg I lost alot of weight in a month but due to antibiotics and stomach virus. Anyways, I saw new endo he bumped me down to 150mg, then a week later after he received my labs he bumped me down to 112mg. He said in 3months we would redo labs and go from there, and he'd have a clearer picture if we need to go up a little. I was a little confused as my last dr had me at 200mg for 2yrs, not sure if she ever bothered to reduce it after I had my daughter, or ever paid attention. And she was supposed to be the BEST dr in my city.

I would like to buddy up with you, maybe share your experience too. I take synthroid, I have all my life. Never experienced with T3 or have I ever heard of other forms of meds to help. All I've ever know was synthroid my whole life.insurance actually have cortisol saliva test next week, do you exactly what that'll pin point?

Im glad I cameven across someone who is in the same boat I am. I'll wait for your reply

[Bella_ in reply to Hidden]

Hello there. It is very interesting to read your experience of this and hopeful that we can share the journey.

I was also born without a thyroid and have taken levothyroxine every day since. Over the years I have had conflicting treatment from doctors who have disagreed with each other then increased or decreased my dosage with difficult consequences. Currently I'm back up to 175mcg which I take at nighttime now to reduce instant exhaustion in late afternoon, allow the medication to absorb in the night and not peak during awake times, to then drop suddenly when I crash. My levels are within the "normal" range yet I still feel awful, I feel lightheaded all of the time (sitting, standing, lying down, exercising, always dizzy) and have a spike of emotion like depression in the evenings like clockwork despite having no rational reason to feel this way. I also have many of the other symptoms associated with under replaced thyroxine.

It has been recommended by my doctor to try separating the dose in to two - 100mcg in morning and 75mcg in afternoon OR 100mcg at bed time and 75mcg when waking up. After a little research, there is a lot of scepticism around the split dose but would love for it to work and will start tonight.

I have not experienced T3 nor FREE T3 - has anyone else?

In search of more solid answers and possible avenues I am booking in to see Dr Toft in April. My quality of life reduces all of the time, its affecting my family, i'm losing friends and its affecting my work too. Hoping there is something he can do to help, no pressure!