# Please help me get a grip



## lindamarline (Aug 29, 2013)

This started in June when a neurologist diagnosed me with restless leg symptoms. Taking 1 mg Ropinirole and it helps immensely. Started thyroid meds 30 ago when trying to conceive second child (was successful).. Have always taken 200 mcg, in recent years Levoxyl. Was always told by GP i was normal and so i never paid attention to what the numbers were. In June the neurologist ordered up labs that included tpo which I never had before. Tpo was 159, tsh .084 -- yes .084, free t4 1.77. Waited 2 months to see endo who says I have Hashimotos. He asked why was i on such high med, that its a big amount for my 133 lbs. btw, 2 years ago I lost 30 lbs thru diet and exercise which I have been able to maintain.

Had an ultrasound that showed what he called slightly enlarged thyroid, more so on right side but no nodes..he didn't seem concerned much.. Told me to go on lesser dose. Said he thought i should eventually get down to around 125. Started 175 mcg. Was given synthroid and told they no longer make levoxyl. Can't sleep, leg and foot cramps at night and am extremely anxious. Also have a high for me pulse which can get racing. In addition my stomach looks like I'm in first trimester!

Questions
1. Can synthroid even in a lower dose than levoxyl be causing this?
2. Does he sound on track and thorough enough?
3. I am quite besides myself. Feel like I've opened a big can of worms. Is my racing heart rate anxiety attack or reaction to drug?

One last thing, was radiated as a baby for enlarged thymus.


----------



## Octavia (Aug 1, 2011)

linda, welcome! I have a few thoughts:

- 200 mcg is a VERY high dose for someone your size who still has their thyroid gland. (I weigh 125-130 pounds, and I take 137 mcg. And my entire thyroid was surgically removed.) If you don't absorb the drug well, then 200 mcg may very well be your ideal dose, but it is awfully high. I suspect perhaps your thyroid has died off, because if you are functioning at 200 mcg of replacement hormone, it's not doing anything for you.

- Do you happen to have your lab's range for that Free T4 test? It would most likely be provided in parenthesis right after your results.

- When did you switch to the Synthroid? Was it in June, or more recently?

- You say your stomach looks like you're in first trimester...is that because of constipation?

- Some people are VERY sensitive to changes in brands and/or dosages. You may be one of those people. In theory, Synthroid and Levoxyl are the same drug, but they use different fillers, so you could also be reacting to that.

Curious to see thoughts from others here...


----------



## joplin1975 (Jul 21, 2011)

I agree its a massive dose.

I wouldn't bat an eye at that TSH. Big deal. If you feel good with it there, then so what? TSH is kinda useless when you are determining your dose.

I wouldn't be doing much until I had a free t3 test...


----------



## Octavia (Aug 1, 2011)

joplin makes a good point about your TSH...I wouldn't worry too much about that. Mine is consistently .05 and my doc is quite happy with that.


----------



## StormFinch (Nov 16, 2012)

The myth that TSH must be within the lab's range is just that, a myth perpetuated by people that don't have to survive in our shoes every day. There are plenty of people walking around with a totally suppressed TSH due to the requirements of thyroid cancer treatment without any adverse effects. I echo the others in that you need the range for your Free T4 and a Free T3 test to get the whole picture.

Levoxyl was recalled and is not supposed to return to the market until mid 2014. As far as other replacement brands, you might try Tirosint which has no fillers and comes in a liquid capsule. Just a heads up though; as it's a name brand with no generic alternative, even the co-pay may be expensive depending on your insurance coverage.


----------



## lindamarline (Aug 29, 2013)

Thanks to all for the replies. I feel like I'm being listened to for the first time. I have a lab order in hand from the endo to be done end of September for:

TSH
T4, Free (direct)
Tissue Transglutaminase (tTG), IgA
Immunoglbulin A, Quantitative, Serum

Is any of the above T3? Should I just hang in there with these symptoms til the next test?


----------



## joplin1975 (Jul 21, 2011)

Nope, no free t3 listed. I would really, really push for that. You've been through enough as it is.


----------



## lindamarline (Aug 29, 2013)

I'm usually not paranoid, but should I be concerned of this doctor's ability? I waited 2 months to see him because he's the one my GP recommended. One other thing, some of my symptoms seem hyper (heart racing, insomnia) while the bloating seems hypo, right? Additionally, the endo explained and insisted on why I need to take the med on an empty stomach which I never was told before. So it is definitely being absorbed now. I have to be honest and am freaked at the idea of gaining the 30 pounds. I lost it very sensibly and currently run every other day 3 miles and do basic core building and strenthening exercises...nothing extreme....plus eat quite normally but no junk extras.


----------



## Octavia (Aug 1, 2011)

Oh, if you were never told to take the medicine on an empty stomach, that would go a long way toward explaining why your dose is so high. The standard instruction is to take it on an empty stomach (generally first thing in the morning), then wait 30-60 minutes to eat.


----------



## joplin1975 (Jul 21, 2011)

Oh, yes, agreed. Take on an empty stomach, wait to eat, and don't take calcium supplements for four hours after eating.

So, the free t3 test would be ideal...but if you can hang in there, it might be worth it to try to take the medication property first and then see where you numbers fall and how you feel.


----------



## Andros (Aug 26, 2009)

lindamarline said:


> Thanks to all for the replies. I feel like I'm being listened to for the first time. I have a lab order in hand from the endo to be done end of September for:
> 
> TSH
> T4, Free (direct)
> ...




Insist on FREE T3. Here is info:

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

In regards to the tummy (I call it Buddha Belly); you may be insulin resistant. If your glucose is high in the range; you may be.


----------



## StormFinch (Nov 16, 2012)

As far as being concerned about the doctor's ability, truthfully very few of them feel that a Free T3 is necessary. It's why we tend to do as much studying up on thyroid issues as we do, become our own advocates and insist that a Free T3 is ran each time.

One other suggestion you might try is to take your synthroid at night before bed. It's been shown that it absorbs better because bowel motility is slower and allows you to eat first thing in the morning if you're on a schedule. It might also help with the bloating.

Oh and symptoms for hypo and hyper can and do cross over. It's possible that you are just getting used to the new formulation in the synthroid, or it might not be agreeing with you because of the change in fillers. Maybe give it some time to see if things get better and see what your next labs say.


----------



## bigfoot (May 13, 2011)

To echo everyone else -- yes, taking thyroid medication with food absolutely, positively affects it. Thyroid meds are absorbed in the GI tract; by eating and taking the meds, you are speeding up the clearance of your GI tract, hence the thyroid meds don't have as much time to absorb. (Same goes with a high-fiber diet. Although you should tailor your meds to healthy eating if that's the case, not the other way around.)

The restless leg syndrome is interesting. I wonder if once your thyroid stuff is dialed in, if the RLS will improve on its own or even go away.

The anxiety is not surprising, especially if you are over-medicated, or suffering from the swings of Hashi's. Check out the link below from Dr. Hall who did a lot of research into anxiety and thyroid (and other endocrine disorders). Once your thyroid meds are more stable I suspect the anxiety will improve, too. A lot of this takes time, though. Medications such as levothyroxine - aka T4 - (Synthroid, Levoxyl, Tirosint, etc.) have a half-life measured in days and weeks. So a change made today might not be fully noticed by your body for another month or two.

http://www.drrichardhall.com/anxiety.htm

hugs6


----------

