Need some advice as to how to convince my endo to increase my liothyrinine from 5mcg/day to 10mcg/day. I'd like to add an afternoon dose to see if that balances me out. I've been patient since I didn't have a choice in that I made the request at my March appointment and was told to wait and give my body time to adjust and it could be considered after my next set of labs if I didn't see improvement. In June I made the same request and I was stuck talking to the nurse- who said my endo said no and I should keep a log of how I feel each day to use at my September office visit. The nurse explained that sometimes the log helps because we can find that it's not really as bad as we think and ended the conversation with "Have a good summer!" REALLY?? Anyway, I did not keep a log because I'm not making up feeling tired all the time and it would only serve to tick me off every time I wrote an entry. Don't get me wrong, it's been a year since my thyroid was removed and it took a very long time to even feel somewhat human again, so I am very thankful that I am better but I will not accept that this is as good as it gets. I am concerned because my endo wasn't thrilled with adding the T3 meds to begin with and said he wouldn't allow it if my TSH got too high. I only have a basic understanding of what has worked for others and want to try the same. I won't have the skill to debate the issue but know I'd rather deal with whatever heart issues he is concerned with at a later date than continue to live like this. I would say I am functioning at 70-75%. I know it's not realistic to think I can achieve pre-MC and pre-thyroidectomy status but I need a little more.
T3-Free Detail
Normal range 2.1 pg/mL to 4.1 pg/mL
9/11/2014. 2.3 pg/mL
6/13/2014 2 pg/mL
3/4/2014 2.2 pg/mL
1/3/2014 2.1 pg/mL
12/13/2013 2.3 pg/mL
T4-Free Detail
Normal range 0.7 ng/dL to 1.4 ng/dL
9/11/2014 1.2 ng/dL
6/13/2014 1.1 ng/dL
3/4/2014 1.1 ng/dL
1/3/2014 1.4 ng/dL
12/13/2013 1.4 ng/dL
TSH Detail
Normal range. 0.35 uIU/mL to 4.50 uIU/mL
9/11/2014 4.91 uIU/mL
6/13/2014 3.83 uIU/mL
3/4/2014 2.69 uIU/mL
1/3/2014 1.85 uIU/mL
12/13/2013 0.92 uIU/mL
How do I convince my endo to change my meds?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How do I convince my endo to change my meds?
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Deb,
When I look at your numbers, the only thing that has changed is your TSH. Free T3 and Free T4 remain virtually unchanged, for all practical purposes.
Your steadily increasing TSH means that your body continues to demand more supplement (either T3 or T4 or both). It is now at a point where he has little choice — he will either have to increase your dose of one or the other or both, or he will be failing to respond to the need for an increased dose as indicated by your lab test results.
What are the listed "normal" ranges for the lab he uses, for TSH, FT3 and FT4?
Tex
When I look at your numbers, the only thing that has changed is your TSH. Free T3 and Free T4 remain virtually unchanged, for all practical purposes.
Your steadily increasing TSH means that your body continues to demand more supplement (either T3 or T4 or both). It is now at a point where he has little choice — he will either have to increase your dose of one or the other or both, or he will be failing to respond to the need for an increased dose as indicated by your lab test results.
What are the listed "normal" ranges for the lab he uses, for TSH, FT3 and FT4?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, I inserted the ranges in my first post.
Would that explain why my heart pounds harder than it should sometimes during more rigorous activity? It feels like I'm out of shape (which is partially true)
Would that explain why my heart pounds harder than it should sometimes during more rigorous activity? It feels like I'm out of shape (which is partially true)
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb,
Do you by any chance have mitral valve prolapse, or have you ever been checked for it? It's not exactly rare among the members of this discussion board, because it's commonly associated with autoimmune thyroid issues. The symptoms you describe (pounding heart and feelings of premature fatigue, out of breath, etc., after exercise, are typical of MVP.
You can see a list of common symptoms at this link:
http://www.thyroid-info.com/articles/mi ... olapse.htm
Those thyroid test ranges confirm my suspicions. You definitely need more supplement, and you need T3 more than you need T4, because your T4 is consistently near the top of the normal range, whereas your T3 is near the bottom of its respective normal range. And even though that lab is still using a normal range that has been obsolete by about 10 years now, your TSH is still too high, even with the use of an obsolete range.
I have a question. Does your endo drive a model T? I don't understand why he chooses to use TSH "normal" values that have been out of date for over 10 years now. If he were using up-to-date range limits, he should have boosted your treatment dose after the June test result.
The American Association of Endocrinologists (of which presumably he's a member) endorsed and adopted changes in the guidelines for the "normal" range of TSH values way back in 2003. Here is a link to some info on that. I'll grant you that he's not the only endo living in the past, but I don't understand what's wrong with those guys. Why are they so afraid of using the best information available for work as important as medical advice and treatment?
http://thyroid.about.com/od/gettestedan ... ltsh_5.htm
New guidelines were issued in 2012, and some authorities are calling for even lower limits to the "normal" TSH ranges.
But here's the problem with the whole setup:
The red emphasis is mine, of course. But do those guidelines suck, or what? So your endo is kind of between a rock and a hard place — whether to cater to your needs/desires, or follow the guidelines. Modern medicine has some really convoluted guidelines that cause it to veer farther and farther away from practical reality. That's probably why naturopaths are gaining ground, while allopathic medicine is losing credibility among the general population.
You might want to read this article, also:
http://thyroid.about.com/od/gettestedan ... oversy.htm
Tex
Do you by any chance have mitral valve prolapse, or have you ever been checked for it? It's not exactly rare among the members of this discussion board, because it's commonly associated with autoimmune thyroid issues. The symptoms you describe (pounding heart and feelings of premature fatigue, out of breath, etc., after exercise, are typical of MVP.
You can see a list of common symptoms at this link:
http://www.thyroid-info.com/articles/mi ... olapse.htm
Those thyroid test ranges confirm my suspicions. You definitely need more supplement, and you need T3 more than you need T4, because your T4 is consistently near the top of the normal range, whereas your T3 is near the bottom of its respective normal range. And even though that lab is still using a normal range that has been obsolete by about 10 years now, your TSH is still too high, even with the use of an obsolete range.
I have a question. Does your endo drive a model T? I don't understand why he chooses to use TSH "normal" values that have been out of date for over 10 years now. If he were using up-to-date range limits, he should have boosted your treatment dose after the June test result.
The American Association of Endocrinologists (of which presumably he's a member) endorsed and adopted changes in the guidelines for the "normal" range of TSH values way back in 2003. Here is a link to some info on that. I'll grant you that he's not the only endo living in the past, but I don't understand what's wrong with those guys. Why are they so afraid of using the best information available for work as important as medical advice and treatment?
http://thyroid.about.com/od/gettestedan ... ltsh_5.htm
New guidelines were issued in 2012, and some authorities are calling for even lower limits to the "normal" TSH ranges.
https://www.aace.com/files/hypothyroidi ... elines.pdfThe National Academy of Clinical Biochemists, however, indicated that 95% of individuals without evidence of thyroid disease have TSH concentrations below 2.5 mIU/L (85), and it has been suggested that the upper limit of the TSH reference range be lowered to 2.5 mIU/L
But here's the problem with the whole setup:
http://thyroid.about.com/od/gettestedan ... lished.htmTreatment for patients with TSH levels between the upper limit of a lab's reference range (usually around 4.0 mIU/L) and 10 mIU/L should be considered if the patient has symptoms of hypothyroidism, positive TPO antibodies, evidence of cardiovascular disease, or risk factors for cardiovascular disease.
Patients with hypothyroidism should be treated only with levothyroxine drugs.
The evidence does not support using levothyroxine-plus-T3 combinations to treat hypothyroidism.
There is no evidence to support using natural desiccated thyroid hormone -- i.e., Armour, Nature-Throid -- in preference to levothyroxine in treating hypothyroidism. The Guidelines conclude that "therefore desiccated thyroid hormone should not be used for the treatment of hypothyroidism."
The red emphasis is mine, of course. But do those guidelines suck, or what? So your endo is kind of between a rock and a hard place — whether to cater to your needs/desires, or follow the guidelines. Modern medicine has some really convoluted guidelines that cause it to veer farther and farther away from practical reality. That's probably why naturopaths are gaining ground, while allopathic medicine is losing credibility among the general population.
You might want to read this article, also:
http://thyroid.about.com/od/gettestedan ... oversy.htm
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Deb,
Incidentally, I forgot to mention that the reason why there is no evidence to support the use of T3, or natural desiccated thyroid hormone is because of the research bias discussed in the Medscape article that I posted about a few days ago. When the powers that be decide to promote certain treatments over others, the patients are almost always the losers, because those agendas are virtually always based on reasons other than the welfare of the patient. There's too much money to be made by promoting agendas, unfortunately.
Excellent Medscape Article On Why So Much Research is Wrong
Tex
Incidentally, I forgot to mention that the reason why there is no evidence to support the use of T3, or natural desiccated thyroid hormone is because of the research bias discussed in the Medscape article that I posted about a few days ago. When the powers that be decide to promote certain treatments over others, the patients are almost always the losers, because those agendas are virtually always based on reasons other than the welfare of the patient. There's too much money to be made by promoting agendas, unfortunately.
Excellent Medscape Article On Why So Much Research is Wrong
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, even Mayo was still using an upper level of 5 for a TSH range in 2012 instead of the recommended 3. Mine was 4.76 when I decided to self-treat. I am having my first appointment with my PCP next since I started on my regimen. It should be interesting. It will be hard to dispute how well I am feeling. Deb
Thanks Tex! And that really sucks....... 
I was a bit surprised about the mention of MVP. I have never had any issues until I had my thyroidectomy. I had sporadic pounding heart the weeks following the surgery which was odd since all I did was lay around but that gradually went away. I figured I just needed my meds to get worked out. I've been more active than I've been in a long time and it doesn't happen every time but often enough to make ticked that it requires more effort than it should to keep up with everyone else. I do have/had many of the symptoms on the list but chalked it up to MC or my thyroid. Good info to know- thank you.
I hope my endo remembers the reference is a guide. G-U-I-D-E as in not set in stone for all. Considering I've never fit into the typical thyroid patient mold, I hope he keeps and open mind. Couldn't help but let out a sarcastic snicker at that last comment while thinking "yeah, right."
It's sad to say he is one of the more open minded endos in my area. Sigh. I've looked around already. Hopefully I won't have to start looking again. You've given me some good info, too bad the profit comes before the patient. There is a naturopath that isn't too far away that uses NDT but none of it would be covered under insurance and I doubt if any endo would do my cancer follow up, whatever that may be in the future, if they aren't the ones calling the shots. Rock and a hard place.
I was a bit surprised about the mention of MVP. I have never had any issues until I had my thyroidectomy. I had sporadic pounding heart the weeks following the surgery which was odd since all I did was lay around but that gradually went away. I figured I just needed my meds to get worked out. I've been more active than I've been in a long time and it doesn't happen every time but often enough to make ticked that it requires more effort than it should to keep up with everyone else. I do have/had many of the symptoms on the list but chalked it up to MC or my thyroid. Good info to know- thank you.
I hope my endo remembers the reference is a guide. G-U-I-D-E as in not set in stone for all. Considering I've never fit into the typical thyroid patient mold, I hope he keeps and open mind. Couldn't help but let out a sarcastic snicker at that last comment while thinking "yeah, right."
It's sad to say he is one of the more open minded endos in my area. Sigh. I've looked around already. Hopefully I won't have to start looking again. You've given me some good info, too bad the profit comes before the patient. There is a naturopath that isn't too far away that uses NDT but none of it would be covered under insurance and I doubt if any endo would do my cancer follow up, whatever that may be in the future, if they aren't the ones calling the shots. Rock and a hard place.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
It's tough to blame the doctors who are out in the field treating patients, because not following the guidelines can be risky, due to liability issues. The sad part is that those doctors don't derive any profit from such research shenanigans — it's the drug companies that call the shots, because they fund most of the research, and I have a hunch that most of the doctors who land the job of writing the regulations know how to tap into those revenues, also. They aren't on those committees for nothing.Deb wrote:too bad the profit comes before the patient
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sadly, the 2012 guidelines actually extended threshold for unequivocal hypothyroid treatment to a TSH result of 10.Deb wrote:Tex, even Mayo was still using an upper level of 5 for a TSH range in 2012 instead of the recommended 3. Mine was 4.76 when I decided to self-treat. I am having my first appointment with my PCP next since I started on my regimen. It should be interesting. It will be hard to dispute how well I am feeling. Deb
The range from 5 to 10 is considered to be subclinical, as per the following note from the article cited below:http://thyroid.about.com/od/gettestedan ... lished.htm(Note: For the purposes of their guidelines, the task force defined overt hypothyroidism as a Thyroid Stimulating Hormone (TSH) level above 10 mIU/L, and subclinical hypothyroidism as a TSH less than 10 mIU/L, with lower Free Thyroxine (Free T4) levels.)
IOW, according to those guidelines, treatment for patients with TSH levels between 5.0 mIU/L and 10 mIU/L should be considered only if the patient has symptoms of hypothyroidism, positive TPO antibodies, evidence of cardiovascular disease, or risk factors for cardiovascular disease.
Apparently their goal is to wipe out hypothyroidism by pretending that it doesn't exist.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Haha, no kidding! I got a front row seat to that non-treatment. It's really sad. If things don't work out well I will have to simply be honest and tell him that it isn't acceptable and look for another even though I would rather stay with him.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Bad news. 
Visit went as I suspected. My endo agrees I my meds need adjustment but is only willing to up the synthroid. Now I will be taking the 50mcg tablets: 150 mcg M,W,F and 100 mcg T, TH, S, and Sunday. He knew I wasn't happy and I explained why. He doesn't agree that my T3 is low or that my T4 is at the high range of normal. He explained that he wants my body to make the conversion to T3 itself and doesn't want to force it and reminded me that I will convert T4 to T3 when needed so the bump in synthroid is the answer. The only good thing I can say is he is very polite (but firm in his course of action). I asked what happens if I continue to feel fatigued after next month's labs and if an AM and afternoon dose of Cytomel could be tried. He said if I were a heavier person he would consider upping the dose but if my symptoms continue then more synthroid will be the next step. Sigh.
I have some pretty big changes coming up before the end of the year and don't know if I should wait and see how I feel in a couple months or start my search now. I don't know how to go about screening new endos because from what I've researched so far, they are all operating under the same protocols in this area.
Visit went as I suspected. My endo agrees I my meds need adjustment but is only willing to up the synthroid. Now I will be taking the 50mcg tablets: 150 mcg M,W,F and 100 mcg T, TH, S, and Sunday. He knew I wasn't happy and I explained why. He doesn't agree that my T3 is low or that my T4 is at the high range of normal. He explained that he wants my body to make the conversion to T3 itself and doesn't want to force it and reminded me that I will convert T4 to T3 when needed so the bump in synthroid is the answer. The only good thing I can say is he is very polite (but firm in his course of action). I asked what happens if I continue to feel fatigued after next month's labs and if an AM and afternoon dose of Cytomel could be tried. He said if I were a heavier person he would consider upping the dose but if my symptoms continue then more synthroid will be the next step. Sigh.I have some pretty big changes coming up before the end of the year and don't know if I should wait and see how I feel in a couple months or start my search now. I don't know how to go about screening new endos because from what I've researched so far, they are all operating under the same protocols in this area.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb,
I have to disagree with his argument that your body will make T3 as needed from T4. Yes, it is obviously making most of what is needed, but if it were working at full capacity, your T4 wouldn't be at the top of the normal range, while your T3 is on the lower side of it's normal range, and most importantly, your TSH wouldn't be high.
When the TSH value is high, then the FT4 level should be low (since it should be somewhat depleted), if your conversion capability is working properly. Since that's not the case, it appears that your body's ability to convert T3 to T4 is at least slightly compromised. As is almost always the problem with modern doctors, he's looking at the TSH and ignoring the FT4 level.
Your only option is to gain weight.
I have a hunch that virtually all endos are likely to operate the same way. Old-fashioned GPs and naturopaths are probably the only ones still handing out scripts for NDT, so they're also probably more likely to agree to synthetic T3. After a thyroidectomy though, they may feel that you need to be under an endo's care.
Thyroid treatments leave a lot be desired these days, unfortunately.
Tex
I have to disagree with his argument that your body will make T3 as needed from T4. Yes, it is obviously making most of what is needed, but if it were working at full capacity, your T4 wouldn't be at the top of the normal range, while your T3 is on the lower side of it's normal range, and most importantly, your TSH wouldn't be high.
When the TSH value is high, then the FT4 level should be low (since it should be somewhat depleted), if your conversion capability is working properly. Since that's not the case, it appears that your body's ability to convert T3 to T4 is at least slightly compromised. As is almost always the problem with modern doctors, he's looking at the TSH and ignoring the FT4 level.
Your only option is to gain weight.
I have a hunch that virtually all endos are likely to operate the same way. Old-fashioned GPs and naturopaths are probably the only ones still handing out scripts for NDT, so they're also probably more likely to agree to synthetic T3. After a thyroidectomy though, they may feel that you need to be under an endo's care.
Thyroid treatments leave a lot be desired these days, unfortunately.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
My weight is the one thing that has remained pretty constant. I did get a good chuckle though thinking of going back to my next visit 20 pounds heavier and asking if I could now have more cytomel now I've read many complaints of weight gain so I'm glad that hasn't been an issue. Although, I would like some of my hair back.
Not really sure what to do at this point but go along with it and see what happens.
I do appreciate your thoughts. I did ask what happens if I don't convert well since he did agree that I didn't when cytomel was originally added. I never got a clear answer, just that the synthroid would be increased to lower my TSH. Sigh.
I've read many complaints of weight gain so I'm glad that hasn't been an issue. Although, I would like some of my hair back.Not really sure what to do at this point but go along with it and see what happens.
I do appreciate your thoughts. I did ask what happens if I don't convert well since he did agree that I didn't when cytomel was originally added. I never got a clear answer, just that the synthroid would be increased to lower my TSH. Sigh.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Well, I reckon we'll see. Maybe it won't lower your TSH as much as he expects. That might be a game-changer.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Deb. Has your Endo checked for reverse T3? It's possible you could be pooling and T3 is not entering your cells. Alternatively, I am on 5mcg generic Cytomel. When I first started taking it, I really didn't notice a difference so I went ahead and bumped myself up to 10 and I did start to feel better. Shortly there after I met with my ENDO and told him I increased my dosage. He wrote a new script to accommodate this increase. I was waiting to get yelled at but surprisingly, he didn't. A week later I started developing heart palpitations. That was when I changed my dosing back to 5 but started taking it at 2am. This works for me quite well. Once or twice a month I will take an extra dose during the day but that is now a rare occasion.
Linda
Linda