I usually try not to post problems of the personal nature online, especially on this site. However, desperation is a fucked up thing...

So, as can be gathered by the title, I am in thyroid hell. I gave birth to my daughter 10 months ago and have yet to loose a pound permanently (meaning I lost some and gained it back). Has anyone had to deal with this? I'm just looking for more ideas and options for my treatment.

So, my brief story:

I breastfeed, eat when I can and as well as I can. For months I cut out absolutely everything that inhibits thyroid function and stresses the adrenals. No response. I exercise as often and effectively as I can. Nothing works, so I went to the dr and was diagnosed with hypothyroidism and referred to another dr who put my on synthroid. Not to mention the nodule and the biopsy. It has been 5 months and I have not responded to the synthroid (yes, I know it can take a long time). My dr wouldn't discuss any other treatment options with me and only looks to the labs, not considering how I feel. I also gathered up my med records and found that the cancer they told me I didn't have was still a real concern, given the types of cells present in the biopsy (fna) (love what they don't tell you) So out of money and out of patience, I stopped seeing that incompetent douchebag.

I realized that one of my good friends has had a pretty hardcore battle with graves disease and he recommended his ND. Still out of cash, I sold my old (read: skinny) clothes to my friends and came up with some money to go see the guy. Yes, I cried. I have yet to make the appointment as I am waiting until after I defend my thesis.

So basically, my question to those of you out there that have dealt with a similar situation, what worked for you? I know it may not work for me, but I'm working on getting together a bigger arsenal of treatment options to discuss with the ND.

T

greta- i was also diagnosed with hypothyroidism last fall, and though i didnt have the weight battles you have had, (my mom did, exact same situation), i have finally picked up after feeling like crap forever.

i have two immediate comments to your concerns in this post, and they are

1- synthroid doesnt work for some people, there is more than one kind of drug, and if you dont feel improved, you should ask to try others. they get them from different sources, or bind them with different things, and some of them are dyed with god knows what, and you might be reacting poorly. also, check what you are actually taking. it probably isnt synthroid, it is probably a generic. different pharmacies may use different generics for the same drugs, and you should check into that.

2- it shouldn't take five months. it should take 2-3 months to to reach maximal effectiveness.

3. your TSH should really be under 2.5, though some doctors will tell you it is ok if it is under 5. i recommend doing some research on that, as i think i read that heard problems are associated with sustained elevated tsh.

4. if you still feel like crap, and your doctor doesn't care, you are definitely doing the right thing seeing another doctor. they should listen to you, not just look at the labs. when i started treatment, i felt a lot better, and i went back for my checkup a few months later, and the doc was like, oh, your numbers look much better, but most ppl feel best if they're still a little lower. want to try a bit more? (obviously with the disclaimer of list of symptoms that would indicate i'm taking too much and should come back in) but the stepped up dose again had a noticeable difference in feeling. i dont know if i would have made it through my first year of gradschool without getting that treated. i slept *all the time.* and you cant, with the baby.

if you wanna talk more, feel free to call me.

Hey Greta,
Dont have too much to add but to say you are on the right track in seeking out a different doctor. I dealt with some thyroid issues myself (in my case it is hashimitos which has the same symptoms as hypo; my mom had a nodule etc. so I guess it is in the family) and my understanding is that ultimately what counts is not just the numbers on the test results but how you feel. I had to see two different doctors until one of them took my concerns seriously. In my case, I responded to the synthroid well; I saw improvement in few weeks, but ultimately it took me one more adjustment of the dose to feel really good again. The level where you feel ultimately best varies from person to person, so you have to work with a doctor to find it I guess.
Anyway, hopefully you can see this new doctor, but remember to be your own advocate, if you are feeling not well, push it until you find someone who is willing to help you. Damn, I spent months doing nothing cause I was tired and sleepy all the time, I couldnt focus, I couldnt read. I couldnt even climb since I had so little energy. It was nightmare. I totally lagged behind in my dissertation work and now I am paying for it.
I hope you'll feel well soon. And (very late) congrats on the baby!

Sorry you're having such a hard time.

What kind of doctor did you see? (family doctor? endocrinologist? ob/gyn?)

Subclinical hypothyroidism is a tricky issue and it has a very specific definition. There is still a lot of debate as to whether we should be treating subclinical hypothyroidism (ie T4 levels are normal, but TSH is greater than 3). There are lots of possible explanations for your symptoms and if your T4 levels and TSH levels are perfectly normal and you're still feeling crappy, maybe it's something else. I'm not saying this is you, but I often see patients who glom onto hypothyroidism as The Cause for their vague symptoms, insist on escalating doses of thyroid meds despite normal lab values, and refuse to consider other possibilities. Lots of people feel fantastic when they're slightly hyperthyroid... it's a great feeling, but too much thyroid hormone can be bad too.

Just be very careful with jumping around from doctor to doctor. I would go back to the same doctor you saw initially (not the douchebag), express your concerns and see if he or she can refer you to someone else. Every time you switch doctors, you lose continuity of care.

NDs can be great, but there is still limited evidence supporting what they do. I don't know if I would take that chance if I had cancer (or am I misunderstanding about the FNA?)

(and of course, this is not intended to be a substitute for medical advice).

Limey,
Thanks! that's a really great synopsis and coincides pretty well with what I've come up with in my lit review.

My Dad agreed - his count was 4.0 after a few months and he still felt crap, doc said he was 'normal'.
After this they upped his dose, count went closer to 1.0 and he feels better.
Good luck.

my doctor told me "most ppl feel best under 2." this was when we were changing my dose from "better that sleeping 16 hours a day" to "fully functional."


oh, and greta, you might already be doing this, but i found i got attention a lot faster when i came in with two weeks worth of sleep, food, and exercise data then just when i came in and was like "i'm tired all. the time."

I'm sorry you feel aweful. I can't imagine what that must be like. Hope you feel better.

Curious, though, what's an ND?

an update:

hopefully a short and sweet one. Armour is working better, but still need a higher dose. My adrenals are also shot...Addison's has not been ruled out. therefore, I've been put on low doses of different hormones, lots of supplements because my body is blocking and binding up medications rendering them ineffective. My blood is pretty messed up...basically what little blood i do have lacks the ability to much carry oxygen (low ferritin). i'm not supposed to exercise and i'm supposed to eat MEAT. lots of MEAT.
hmmm. this no exercise thing sucks. but it isn't like i have any endurance...thanks a lot crappy blood and ghetto booty. booo.

my choice of care provider--the ND thank god! the ENTs and Endos=no change at all.

an update:

hopefully a short and sweet one. Armour is working better, but still need a higher dose. My adrenals are also shot...Addison's has not been ruled out. therefore, I've been put on low doses of different hormones, lots of supplements because my body is blocking and binding up medications rendering them ineffective. My blood is pretty messed up...basically what little blood i do have lacks the ability to much carry oxygen (low ferritin). i'm not supposed to exercise and i'm supposed to eat MEAT. lots of MEAT.
hmmm. this no exercise thing sucks. but it isn't like i have any endurance...thanks a lot crappy blood and ghetto booty. booo.

my choice of care provider--the ND thank god! the ENTs and Endos=no change at all.