Thyroid still not regulated.

Background - I had a total thyroidectomy 9/30/10. My thyroid labs have been crap since. I have almost all the symptoms of hypothyroid except constipation.   Basically, I have NO energy, I freeze all the time, my mood is depressed, I have brain fog, couldn't care less about sex (horrors!), my frigging hair is thinning (but not brittle), my skin is dry and did I mention I have NO. Frigging. Energy?!?

I’m angry and frustrated, to say the least. The endocrinologist keeps ordering labs and raising my dose of Levothyroxine (generic Synthroid). He started me at 150mcg, then raised it to 250, then 300. I’m now taking 400mcg daily, which is “quite a bit more than most patients take" per the doc. Yeah well, most people didn't have a DS.

My free T4 is 0.83 (normal range: 0.78-2.19), which the doc says he wants at 1.0. The most recent labs had my TSH at 35, up (UP?!?) from 33 the time before. The one before that was 44. Normal range is between 0.4 & 4.4, or 0.5 & 3.3, depending on which lab one uses and what studies one reads. More recent studies show the latter is preferable and some show that even when the labs are within ‘normal’ results, a point or two can make the difference in feeling ok and feeling like hammered ****

I take the Synthroid as soon as I wake up with at least 8oz of water, don't eat for at least an hour and don't take calcium or iron for at least 3 hours. This has really put a kink in my supplementation schedule, but by the grace of God & a big spoon...

I have an appointment in about 5 weeks. I hope this increased dose works. I’m sick & tired of feeling sick & tired. I didn’t lose 120 lbs to mope about and sit on my ass all the time. Dammit. My other labs are ok. Ok as in I am still low in D & A but they are steadily trending upward and everything else is where it needs to be or not far from it. I'm eating protein and drinking liquids and doing everything else a good DSer should.

Anyone have any suggestions, recommendations, commiserations or just want to join in my vent?

I see T4 and the free TSH but no mention of your T3. Has that been measured yet? I started with taking Levothroxine and still feeling bad so I asked my PCP who was the one treating me to check the T3. He obliged just because we could not explain my issues and it was low too. So we added the generic for Cytomel. I now take both every morning.

Also levothroxine may not be the one you need, some people do better on another one. I have a friend who uses the Armour brand and does extremely well. Her endo has her on that one.

And it's possible something else you are taking is interfering with your medication. Check this page: esp page 2 toward the bottom about Tyroid meds and other meds.

Liz

He did check T3, but not this last time. I'll have to get the results on it. I wait about 3 hours before taking anything else - have read gobs of info & talked to the pharmacist about interactions. Hell, I even hold off on caffeine. UGH! Thanks for the links & info.

well it has been some time since you had your thyroid removed,and it does take a while to regulate,  hopefully you can be regulated very soon.  I do have a question for you....did they preseve at least one of your parathyroid glands when they removed your thyroid? 

Paras intact. I'm trying to be hopeful.

 There have also been many studies that the generic synthroid is not effective compared to the actual branded one. If your insurance will not pay for the branded synthroid you have proof it is not working for you based on your labs and the efforts you and the physician have tried to regulate your hormone levels, based on your efforts, the physician can submit this to your insurance and make sure you are taking synthroid, and not generic. Also since your parathyroid glands were removed, you need calcitonin to help with the already impaired absortion our surgery gives us. :D

I'll talk to him about getting the real deal when I go in next. Thanks for the info! Oh - parathyroids are intact. Only thing removed was both lobes of the thyroid.

 Wish I could help you out here, Charlee, but I don't know a great deal about thyroid issues.   I do know that my girlfriend could not get hers straightened around until she saw an endo doc that actually specialized only in thyroid.     

I hope you feel better soon!

Thanks dear, me too!

Aw man!  Poor thing.  My TSH sits around 4-5 right now and even that makes me feel like crap, so I cannot even imagine how you feel.

I, too, am curious about your free t3.  I often have low-normal t4, high-ish tsh, and pretty low free T3.  I think adding a T3 agent or taking a combo of both in one like armour may really help you. 

And that "quite a bit more than most patients take" is such an annoying quote.  I'm sure most of the patients he sees actually have a thyroid gland, it is just underactive.  You have none at all, of course you will need more!

In an ideal patient, you would be converting the T4 to T3, but you're not ideal, and I really bet your free T3 is in the basement.

FWIW--my endocrinologist NEVER runs a thyroid panel without running all 3 of those tests.  I think she's incredibly frustrating in her own right, but your endo seems to take the cake!

A good endo is so hard to find!