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Old 03-11-2012, 06:51 AM   #1
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Angry I give up!

I have tried for 6 years to educate myself about my Hashi/Hypo. Like most of us, I have had to fight for the proper testing. Now it seems I have to figure out what to do about things. I was quite thrilled last Spring, when I saw a new Endo, and he was willing to try something other than synthetic T4, which left me with Free T3 that was always low in-range. T4 was way at the top...coupled with my lack of energy, no stamina, just , BLAH...a few of the symptoms I had gotten used to, because I've had them so long! The first thing he said to me was "you're not getting enough thyroid hormone" he had my latest labs right in front of him. I thought, YAY, he gets it! He agreed to try me on a combo of T4/T3 (synthetic)..we lowered my 150mcg Levo to 137mcg, and added 5 mcg T3. I noticed improvement in my skin , and mood. But then I started to have strange vision problems: sudden double vision, patterns floating like things, but nothing actually in my eyes. I certainly wasn't cozy with this. Blood work nver looked any bteer on this protocol either...Free's were even lower.weird?!?! SO.I asked for desiccated, feeling like I really needed that T3. My first "red flag" was him wanting me to start on a full 2 grains, YIKES! No way! I started myself on 1 grain. Became very hypo. I was still hypo 2 weeks ago on, 135mg desiccated. My blood work was TSH, 6.61 FT4 0.7 FT3 2.4....garbage!! When I called to get those last results, I was told the Dr. wanted me to add 15mg's on Sundays...so, take 135 6 days a week and 150mg 1 day...Of course, this sounded just plain stupid to me, so I began taking 150mg daily (2 1/2 grains). NOW, just yesterday, I had an all day, terrible headache, mild anxiety, some sweating for no reason...but the swelling in my calfs was much less..this is just too much. I have no idea if that 2 1/2 grains is too high, or my body is just trying to adjust and I'm feelin a bit hyper. i don't have bloods on this dose yet. This doc is not good with how to adjust doses and test. He will raise my dose, and then tell me to come back in 3 months!!! Maybe I should do what he says, and add 15mg one day a week?? Doesn't seem right to me though. Just when I thought I finally found a doc that would help me, here I am...hit the wall, and not trusting the doc. Am I to live the rest of my life, either Hypo or Hyper. Just so you all know, I saked about adrenal issues on my first visit with him...his response, was your kidneys are fine and your liver is fine..WTH??? Srry, long rant..I just hate the thought of starting all over again on something else.

 
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Old 03-11-2012, 11:12 AM   #2
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Re: I give up!

(hugs) never give up!

Maybe it's a start to ask him a hard copy of your labs? That way you have insight in what is going on and that way you might be able to guide your doctor on how to adjust your dosage.

hang in there

 
Old 03-11-2012, 11:42 AM   #3
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Re: I give up!

There is a bright side to your tale. You have an endo willing to prescribe natural thyroid med! You should take hope from that alone.

Your feeling has validity that taking an extra 15 mg one day a week won't help. Natural thyroid works best with a stable daily dose. And 15 mg is so little, anyway.

I'm amazed that your TSH could be so high while taking what is an average therapeutic dose for most. Are you absolutely sure you're taking it consistently, apart from food and iron or calcium supplements? What brand of dessicated are you taking? Reformulations of some have left people hypo again.

It's really not a good idea to raise the dose on your own, most especially without labwork for guidance. You're having physical signs that you're taking too much and you should not be ignoring them. I once had such signs for a day or two following a doctor-ordered increase. I skipped a day's dose, the signs left, and I continued on without further problems. But... Signs cannot ever be ignored.

Don't assume you "have to start all over again". I think it's a matter of finding the right dose and brand. Your MD may not be perfect, but few are... and some are a whole lot worse!
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Old 03-11-2012, 02:55 PM   #4
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Re: I give up!

Conversion doesn't appear to be the issue here. There's absolutely no FT4 in your system to convert in the first place. The issue is raising the FTs to the upper half of their ranges... Whether it be by substantially increasing the dose or by using a different brand/type of hormone.
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Old 03-13-2012, 02:07 AM   #5
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Re: I give up!

Thank you both for your responses!
Maybe I wasn't as clear as I thought I was, Midwest. If you read the post again, you'll see that I did have conversion issues when taking Levothyroxine. This is the reason I wanted desiccated. I do have all my labs written down, ranges are always the same, so I just keep my results and the date, and what i'm taking at the time of labs. I'm taking Armour. ON 135mg's...I remain hypo. But 2 weeks on 150 I thought I was having hyper symptoms. That's the problem. I know 135 isn't enough to get me out of being hypo, but 150 only 1 day a week won't help either. I did have very recent labs that I posted, showing hypo. So I wasn't changing doses w/o labs. My frustration is because the Endo I now see(after countless other doc's) told me to take an extra 15 mg on Sundays!!!! I believe he isn't familiar with how to titrate desiccated, and has been doing so as if it's Levothyroxine, which, of course has left me hypo. I do follow the program:take it in the AM, on an empty stomach, wait an hour to eat, no supplements, take it EVERY morning. But as I said in my first post, when I took that extra 15mg daily, I thought I felt some hyper symptoms...this is why I wrote the post. I have no idea what to do now. The only thing I can think of is switching to a different brand of desiccated. I have heard good things about NP Thyroid. I would have no idea what dose to start on, and my faith in this Endo doesn't help..he seems clueless about how to work with these things. All this leaves me feeling lost...I have no desire to feel hyper, and the dose I take now leaves me hypo. But, thank you bothe anyway for taking the time to respond, I do appreciate it :=)

 
Old 03-13-2012, 08:15 AM   #6
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Re: I give up!

Quote:
Originally Posted by rtis44 View Post
Maybe I wasn't as clear as I thought I was, Midwest. If you read the post again, you'll see that I did have conversion issues when taking Levothyroxine.
I did miss that in your original post; but my second response was more aimed at another member's response that has since been deleted. Sorry for the confusion.

I still say your main problem is not conversion. It's that what would be a full replacement dose for most women isn't effective for you. A small number of people need as much as 240 mgs or more to raise their FTs high enough to eliminate symptoms. Maybe you're one of them.

I understand you don't like feeling hyper. I know what that's like. Raising the dose can sometimes cause new symptoms or old ones to worsen, but it's usually temporary. As long as your FTs are truly at hyper levels, you can muster through it. Levels like yours are going to take a good amount of time to become hyper.

[BTW, If you would divide what you write into paragraphs, it'd be a lot easier to read and understand.]
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Old 03-13-2012, 08:45 AM   #7
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Re: I give up!

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Originally Posted by midwest1 View Post
I did miss that in your original post; but my second response was more aimed at another member's response that has since been deleted. Sorry for the confusion.

I still say your main problem is not conversion. It's that what would be a full replacement dose for most women isn't effective for you. A small number of people need as much as 240 mgs or more to raise their FTs high enough to eliminate symptoms. Maybe you're one of them.

I understand you don't like feeling hyper. I know what that's like. Raising the dose can sometimes cause new symptoms or old ones to worsen, but it's usually temporary. As long as your FTs are truly at hyper levels, you can muster through it. Levels like yours are going to take a good amount of time to become hyper.

[BTW, If you would divide what you write into paragraphs, it'd be a lot easier to read and understand.]
I know my main problem now, is not one of conversion.

But in the past, nearly 6 years, it was. Based, not only on labs. I have had hypo symptoms throughout. And labs to match. My FT4 was at the top of range and my FT3 was never above 2.9...2.3 being the lowest in range. I was taking 150mcg Levothyroxine.

I will see this Dr. next week. Until that time, I'll just do as he directed. I have a feeling that when I consult with him, he'll give me the go ahead to take 150mg's. His advice to take an extra 15mg, 1 day a week really threw me!! I know I'm still quite hypo.

Sorry about those rambling posts, LOL! I get so frustrated, and just type away... Once again, Thank you for your input.

 
Old 03-13-2012, 08:56 AM   #8
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Re: I give up!

Quote:
Originally Posted by rtis44 View Post
Sorry about those rambling posts, LOL! I get so frustrated, and just type away...
Ohh... Believe me... I completely understand! LOL

Let us know what happens with the doc next week!
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