Where do I begin?

juliekaboolie · 04-26-2012, 09:44 AM

Hello! I was diagnosed hypothyroid a little over 10 years ago. Since then, I've been taking 88mcg of Levothroid all that time. Over the past 2 years, I have been battling some symptoms that I hadn't attributed to my thyroid until recently. Fatigue, sore muscles (despite not exercising), constipation, acne, heart palpitations, inability to lose weight, and dry skin (despite using lotion). I saw a doctor 2 days ago, who said she thinks it's the rare person who can take the med I'm on and do well. So she ordered a new panel of bloodwork and is checking my reverse T3 (I think that's what it's called). She believes I will need a different med. I'm seriously hoping that she's right because I want to feel better. Anyway, I have never really studied up on thyroid issues. I don't know anything about it, really. I've always just taken my pill in the morning...even skipping it once in awhile. I didn't take it seriously. Now that I am not feeling well...almost ever...and speaking with that doctor......I feel that I should learn more. So where to begin? Books? Blogs? I don't understand half of what you guys are posting about. I don't even understand what the test results mean. If you have some suggestions, I would appreciate it. Thanks!!

Leo41 · 04-26-2012, 11:14 AM

All these years you weren't getting regular blood tests? I was diagnosed about that long ago, and I've had 5 'adjustments' of my meds during that time because my endo runs blood tests every 4 months. Some people stay with the same dosage for years and years with no problems, and others need occasional to frequent adjustments. According to my endo, there's no way to predict, which is why regular testing is advised.

If you're getting symptoms, it's likely that you may need an adjustment of your meds. However, I could caution you about Internet info. I always check with my endo, and a lot of the 'popular ideas' are very unreliable.

I would also add that your doctor raises some red flags for me with the comment that it's a 'rare person' who can take the med you're on and do well. It's one of the most common T4 hormone supplements, and not only have I taken it for all these years with no problems, but almost everyone I know who is hypo (several of my friends and my two sisters) takes it and does really well.

In addition, the comment about reverseT3, currently a big issue on the Internet, is not recognized by mainstream endos as a 'problem.' It is highly likely that you either need additional T4 (higher dosage) or some T3 (if you have problems with conversion of T4 to T3).

If you want more info, I'd suggest that you limit yourself to medical websites, as WebMD or the Mayo Clinic. There are several medical websites that give basic thyroid info.

watcher513 · 04-26-2012, 04:46 PM

Do you have your lab results (with ranges)? Do a search for Stop The Thyroid Madness and also the site where Mary Shoman posts (About). There's nothing wrong with reading here, read anywhere you find information. No, we're not doctors but we sure have a lot of hypothyroid patient's experience.

Agreed that you may need a med adjustment. Possibly your FT3 tanked. It happens. It happened to me around 10-11 years after being only on T4.

Even Dr. Bernstein on a teleconference stated that he believes most people that have labs at mid-range the the FT's feel better. Some of us feel better when our FT3 is higher, in the 2/3-3/4 range. It's such an Individual thing and we have to find out for ourselves just where our sweet spot is. That takes tweaking doses, or adding T3 if we weren't on it and that takes time to figure out. It's a give and take thing to find the right dose(s).

I've been on Levothroid since 1998 and did fine until 3 years ago. I had to add T3 (generic, Mylan, NOT Paddock for me) at that time so I wouldn't fall asleep every afternoon (when I hadn't before). We can quit converting T4 to T3 and that's when we need a med adjustment or addition.

brandywine12 · 05-02-2012, 05:22 AM

well for one thing that stands out to me is the fact that your skipping here and there.
How can your labs be consistent if your not taking it seriously? I would be having problems too if it were me. This is a life long journey on meds. t4 meds or any td meds take a while to register in your body, it isn't a quick fix. It takes 6-8 weeks for your meds to really do their job.And then it can take years to get where you need to be in order to feel well. Patience is the Key here.What do your labs look like w/ ranges? Your troubles sound to me like your HYPO, meaning slowed down, it too can cause what your having an issue with.

04-26-2012, 09:44 AM	#1
juliekaboolie Major LCF Poster! Join Date: Jan 2011 Location: Bellingham, WA Posts: 1,382 Gallery: juliekaboolie WOE: Whole30 Start Date: 1/7/11	Where do I begin? Hello! I was diagnosed hypothyroid a little over 10 years ago. Since then, I've been taking 88mcg of Levothroid all that time. Over the past 2 years, I have been battling some symptoms that I hadn't attributed to my thyroid until recently. Fatigue, sore muscles (despite not exercising), constipation, acne, heart palpitations, inability to lose weight, and dry skin (despite using lotion). I saw a doctor 2 days ago, who said she thinks it's the rare person who can take the med I'm on and do well. So she ordered a new panel of bloodwork and is checking my reverse T3 (I think that's what it's called). She believes I will need a different med. I'm seriously hoping that she's right because I want to feel better. Anyway, I have never really studied up on thyroid issues. I don't know anything about it, really. I've always just taken my pill in the morning...even skipping it once in awhile. I didn't take it seriously. Now that I am not feeling well...almost ever...and speaking with that doctor......I feel that I should learn more. So where to begin? Books? Blogs? I don't understand half of what you guys are posting about. I don't even understand what the test results mean. If you have some suggestions, I would appreciate it. Thanks!! __________________ ~ "Before"- 227lbs (2008) ~ "Current"-185lbs (April, 2013) My goal has changed from mere weight loss to health, quality of life, and longevity. This is no longer a diet but a way of life. "NEVER, NEVER, NEVER GIVE UP!"~Winston Churchill

04-26-2012, 04:46 PM	#3
watcher513 Major LCF Poster! Join Date: May 2007 Location: Sonoma County, CA Posts: 2,637 Gallery: watcher513	Do you have your lab results (with ranges)? Do a search for Stop The Thyroid Madness and also the site where Mary Shoman posts (About). There's nothing wrong with reading here, read anywhere you find information. No, we're not doctors but we sure have a lot of hypothyroid patient's experience. Agreed that you may need a med adjustment. Possibly your FT3 tanked. It happens. It happened to me around 10-11 years after being only on T4. Even Dr. Bernstein on a teleconference stated that he believes most people that have labs at mid-range the the FT's feel better. Some of us feel better when our FT3 is higher, in the 2/3-3/4 range. It's such an Individual thing and we have to find out for ourselves just where our sweet spot is. That takes tweaking doses, or adding T3 if we weren't on it and that takes time to figure out. It's a give and take thing to find the right dose(s). I've been on Levothroid since 1998 and did fine until 3 years ago. I had to add T3 (generic, Mylan, NOT Paddock for me) at that time so I wouldn't fall asleep every afternoon (when I hadn't before). We can quit converting T4 to T3 and that's when we need a med adjustment or addition. __________________ Terry

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04-26-2012, 11:14 AM	#2
Leo41 Senior LCF member Join Date: Nov 2007 Posts: 8,425 Gallery: Leo41 Stats: 340 then/145 now WOE: Low carb/calorie cycling	All these years you weren't getting regular blood tests? I was diagnosed about that long ago, and I've had 5 'adjustments' of my meds during that time because my endo runs blood tests every 4 months. Some people stay with the same dosage for years and years with no problems, and others need occasional to frequent adjustments. According to my endo, there's no way to predict, which is why regular testing is advised. If you're getting symptoms, it's likely that you may need an adjustment of your meds. However, I could caution you about Internet info. I always check with my endo, and a lot of the 'popular ideas' are very unreliable. I would also add that your doctor raises some red flags for me with the comment that it's a 'rare person' who can take the med you're on and do well. It's one of the most common T4 hormone supplements, and not only have I taken it for all these years with no problems, but almost everyone I know who is hypo (several of my friends and my two sisters) takes it and does really well. In addition, the comment about reverseT3, currently a big issue on the Internet, is not recognized by mainstream endos as a 'problem.' It is highly likely that you either need additional T4 (higher dosage) or some T3 (if you have problems with conversion of T4 to T3). If you want more info, I'd suggest that you limit yourself to medical websites, as WebMD or the Mayo Clinic. There are several medical websites that give basic thyroid info.

05-02-2012, 05:22 AM	#4
brandywine12 Senior LCF Member Join Date: Jan 2011 Location: Pa. Posts: 313 Gallery: brandywine12 Stats: 195/160-155 WOE: Atkins 100% Start Date: 1-4-11	well for one thing that stands out to me is the fact that your skipping here and there. How can your labs be consistent if your not taking it seriously? I would be having problems too if it were me. This is a life long journey on meds. t4 meds or any td meds take a while to register in your body, it isn't a quick fix. It takes 6-8 weeks for your meds to really do their job.And then it can take years to get where you need to be in order to feel well. Patience is the Key here.What do your labs look like w/ ranges? Your troubles sound to me like your HYPO, meaning slowed down, it too can cause what your having an issue with.