Hypothyroid -- meds? Update #28, stopped the meds... - Page 2

[kittywitty]

My 6 yo has profound hypothyroidism. She's on name brand synthroid right now. 50 mcg for $27 a month. I think. I'll have to double check with dh. Our insurance is supposed to cover it, but has been throwing a fit that it's not the generic. The generic just did not work for her. Her tsh was originally 617, and then it jumped back up to 150+ on the generic after treatments, so we're on synthroid now.

[crunchy_mommy]

Doubled my dose last week and STILL no change. I don't understand how I don't have ANY effects, positive or negative...

[mommytimes2]

Sorry you are going through this...I know how frustrating it is trying to find "just the right" dose. It does take a few weeks for blood levels to reach their equilibrium on a new dose. And it could be that you still need an even higher dose. Personally, if I am even a little on the low side, I might as well be off the charts hypothyroid.

Any chance you can get Free T4 and Free T3 levels checked to see if they are starting to improve (maybe at the two week mark from when you started the new dose)? Even more important is how you are feeling, but maybe doing the labs in the short run will give some information so you feel comfortable continuing with the current dose for a few more weeks before testing again, or alternatively, increasing your dose now if levels haven't risen much.

In any event, if you still aren't noticing a difference in how you feel at the end of 6 weeks from your dose increase, how you are feeling is more important than the labs. Insist that they treat your symptoms and not just the lab numbers, as some people have "normal" thyroid levels, but still need their treatment adjusted further in order to feel well. I hope you feel better soon!

[calapitters]

Originally Posted by crunchy_mommy 

Doubled my dose last week and STILL no change. I don't understand how I don't have ANY effects, positive or negative...

Sorry, mama!  I know how you feel!  It is SUPER frustrating to deal with finding the right dose.  Thyroid meds take anywhere from 6-8 weeks (!!!) to kick in.  That is a long, frustrating wait.  My one year old was born with congenital hypothyroidism and has been talking Levoxyl since she was 2 weeks old.  She gets blood draws every two months and we have yet to find a consistent dosage. It is really not worth having blood draws any sooner than this because it takes so long for the body to regulate the hormone.  So, unless you are really symptomatic (weight gain, lethargic, loss of appetite for under active thyroid/hyper, insomnia, hunger for too much) the waiting game is how it works. Thankfully, we have been able to keep her T4, T3, and TSH levels within range and she is a happy, healthy baby girl!  Most likely, she will have to be on meds for her whole life, which is a daunting thing to think about, but a small price to pay for  healthy development.  Currently she is on 25mcg, but last month we were alternating 25mcg with 12.5mcg.  She has a blood draw and endo appointment next month, and we'll see what her levels are then.  I am prepared for another dosage change!  Hang in there, it WILL get better!

[Marnica]

OP -

I agree it does take a while, but i also agree with a PP who suggested you look at yur adrenal function. The two of these things are often times intricately woven and if you fix one without fixing the other, either you wont get results or you may even feel worse.

Can you find a doc who would be willing to do a full hormone panel on you and a 24 hr corisol saliva test?

[crunchy_mommy]

I am going to my doctor this week, I will ask him about those things. I know it can take awhile but it's been almost 2 months and I don't even feel a little bit better.

[Anastasiya]

Originally Posted by crunchy_mommy 

I am going to my doctor this week, I will ask him about those things. I know it can take awhile but it's been almost 2 months and I don't even feel a little bit better.

Hi crunchy mommy, what kinds of symptoms did you have, and still have?

Some people just don't do well at all on compounded thyroid. Maybe you can switch to Erfa or Acella?

There's also Armour, of course, and Naturethroid, but both have cellulose as fillers, which binds to the hormone.

[crunchy_mommy]

I guess this thread is old now but just wanted to update...

After 3 months on the meds, I felt no better... so I stopped taking them. After a few weeks off them, I realized my mood is much more stable. I mean, it still goes up & down, but not to the extreme it seemed to be while I was on the thyroid stuff. Has anyone ever heard of that, of thyroid meds affecting moods like that??? I'm wondering if it's a clue to... something. Maybe it's just coincidence. But I was really really depressed just for those couple of months and now I'm not great but nowhere near that level of misery. I was starting to think I was bipolar or something.

Anyway, I'm still experiencing the same symptoms that led me to try the meds in the first place... most bothersome is overwhelming fatigue, but I also seem to have lots of headaches, digestive issues, sudden sleepiness, and random aches & pains, along with increased food allergies. Maybe this is just how my life will be. My doctor has basically given up on me & I'm torn between trying a different doctor or just giving up (on the medical issues) myself too.

[maciascl]

Originally Posted by crunchy_mommy 

I guess this thread is old now but just wanted to update...
After 3 months on the meds, I felt no better... so I stopped taking them. After a few weeks off them, I realized my mood is much more stable. I mean, it still goes up & down, but not to the extreme it seemed to be while I was on the thyroid stuff. Has anyone ever heard of that, of thyroid meds affecting moods like that??? I'm wondering if it's a clue to... something. Maybe it's just coincidence. But I was really really depressed just for those couple of months and now I'm not great but nowhere near that level of misery. I was starting to think I was bipolar or something.
Anyway, I'm still experiencing the same symptoms that led me to try the meds in the first place... most bothersome is overwhelming fatigue, but I also seem to have lots of headaches, digestive issues, sudden sleepiness, and random aches & pains, along with increased food allergies. Maybe this is just how my life will be. My doctor has basically given up on me & I'm torn between trying a different doctor or just giving up (on the medical issues) myself too.

Try a different dr!!!! I have had thyroid issues for many years but I've never pushed my dr to do the full thryoid panel so I've never been properly diagnosed. No that I've been under intense chronic stress for the last 3 years my thryoid symptoms are even worse but I have no insurance and can't do anything about it. I REALLY wish I had pushed when I had the chance!

[crunchy_mommy]

Yeah insurance issues are a big part of the problem, we can't afford the tests and stuff, we have insurance but it's really bad ins. and will be getting even worse as of the 1st of the year. SOOOOO frustrating!!!

[Anastasiya]

crunchy mommy, IF you really do have a thyroid condition, and you leave it untreated, it will eventually cause your blood pressure to go up (you will be on BP meds), you will develop countless allergies (you'll have to take antihistamines, etc), you will develop heart arrythmias (and have to be on beta blockers and/or calcium channel blockers), and you could end up with congestive heart failure and other organ failures. All due to one little thing.

You need to find a doc who will help you....it's worth it in the end.

Ask for these tests:
TSH

Free T3

Free T4

Iron panel INCLUDING Ferritin

Vit D

B12

Low ferritin could be causing your symptoms as well as low vit D, but you won't know unless you look. :)

Also, I would not use compounded thyroid if you needs meds. Try Armour or Acella. I say no compounded because sometimes they are slow-release, and when you eat that will disrupt the hormone that is STILL in your system and make it unavailable to you. And sometimes they put fillers in that our bodies can't work with, like cellulose.

I am interested in knowing what kind of meds you were on, if it WAS time/slow-release, and what the strength was. (milligrams)...

[crunchy_mommy]

Originally Posted by Anastasiya 

crunchy mommy, IF you really do have a thyroid condition, and you leave it untreated, it will eventually cause your blood pressure to go up (you will be on BP meds), you will develop countless allergies (you'll have to take antihistamines, etc), you will develop heart arrythmias (and have to be on beta blockers and/or calcium channel blockers), and you could end up with congestive heart failure and other organ failures. All due to one little thing.

You need to find a doc who will help you....it's worth it in the end.

Ask for these tests:TSH

Free T3

Free T4

Iron panel INCLUDING Ferritin

Vit D

B12

Low ferritin could be causing your symptoms as well as low vit D, but you won't know unless you look. :)

Also, I would not use compounded thyroid if you needs meds. Try Armour or Acella. I say no compounded because sometimes they are slow-release, and when you eat that will disrupt the hormone that is STILL in your system and make it unavailable to you. And sometimes they put fillers in that our bodies can't work with, like cellulose.

I am interested in knowing what kind of meds you were on, if it WAS time/slow-release, and what the strength was. (milligrams)...

I was on 60mg & my doc didn't feel comfortable raising the dose any further since it was doing NOTHING. I don't think it was slow-release or anything. I did make sure to wait at least an hour (though usually several hours) before eating.

I did have all those tests a year or two ago. My levels were only borderline low, he wouldn't have even treated it if I hadn't been symptomatic. Really, all my blood levels of every test I've ever had has technically been normal (except a high WBC), although I'm always just a few points away from abnormal results on pretty much everything. My body is just so out of whack but nothing that fits with any recognized syndrome.

I do have tons of (new) allergies to lots of different foods. I also have a heart murmur & used to take beta blockers for it but stopped and no longer have any kind of cardiac diagnosis or anything. It's not that I don't care about the risks of not treating hypothyroid, it's just that I'm not even convinced that's what my problem is. And I feel so much better mentally since I stopped the thyroid pills. I was going nuts before, severely depressed & self-injuring again and stuff and have felt sooo much more stable since I stopped taking them. I'm honestly scared to take anything again.