Tex - That is a great explanation of what coffee does: it increases my alertness, but gives me no additional energy! It's so frustrating in the mornings (especially) when my desire is there but my energy is not! My TSH is on the lower side of normal, my Free T4 is below normal, and my Free T3 has not been measured. The endo and the ENT both told me emphatically that my thyroid was normal despite my long list of symptoms. I've been at a loss as to what to do. Asking my pharmacist for a cooperative doc is a really good idea! Thanks, LindyLou!
Kari - I hope you can figure this out and start feeling better soon!
Kathy
Here we go again ..........
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thanks for your input and suggestions Deb and Linda. I'm ordering the med from an online pharmacy, and am worried about the "fillers". I thought natural thyroid would work for me since I tolerate pork well, and my PCP said it's relatively pure. I will receive it in a couple of days and will definitely check out the inactive ingredients before starting it. Fortunately, my PCP is very open minded, so she will work with me and order what I want.
Pat - I saw the link on your other thread, so I had read it while researching - very interesting. Are you taking T3 now, and is it helping?
Love,
Kari
Pat - I saw the link on your other thread, so I had read it while researching - very interesting. Are you taking T3 now, and is it helping?
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Someone was kind enough to share this with me regarding cytomel containing gluten:
http://whattofeedyourkids.blogspot.com/ ... luten.html
I am taking tbe generic Liothyronine by Paddock in the morning when I get up. It is GF and appears to be a safe alternative to the name brand. I also take the 50mcg pills of Levothyroxine by Mylan. It is free of questionable fillers and dyes. The drawback is that the dye free is only in the 50 mcg tablets which makes dosing a bit more complicated. I take 2 pills/day M-Sat and 3 1/2pills on Sunday before I go to bed. I seem to get more achey by Thursday of each week and a bit more irritable. It's hard to tell if it's dosage related or if it's just external factors that build up during the week.
LindyLou- what is T3 by the circadian method? I wish my endo would allow a try with NDT. Hopefully the time will come sooner than later. From comments he has made, some doctors seem to be realizing the importance of T3. Although, it was like pushing a rope trying to get him to allow T3 meds. It was synthetic or nothing so I'm thankful for that.
http://whattofeedyourkids.blogspot.com/ ... luten.html
I am taking tbe generic Liothyronine by Paddock in the morning when I get up. It is GF and appears to be a safe alternative to the name brand. I also take the 50mcg pills of Levothyroxine by Mylan. It is free of questionable fillers and dyes. The drawback is that the dye free is only in the 50 mcg tablets which makes dosing a bit more complicated. I take 2 pills/day M-Sat and 3 1/2pills on Sunday before I go to bed. I seem to get more achey by Thursday of each week and a bit more irritable. It's hard to tell if it's dosage related or if it's just external factors that build up during the week.
LindyLou- what is T3 by the circadian method? I wish my endo would allow a try with NDT. Hopefully the time will come sooner than later. From comments he has made, some doctors seem to be realizing the importance of T3. Although, it was like pushing a rope trying to get him to allow T3 meds. It was synthetic or nothing so I'm thankful for that.
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
Hello Deb,
Below is a link to the circadian method. After researching this and reading the forum on facebook, I changed taking my T3 from the morning and after noon (split doses), to taking one full dose at 2:00am and noticed a difference. When I first started dosing with T3 I'd split a 5mcg pill in half taking one at 8am and the second dosing around 2pm. For the first week I didn't need an afternoon nap, but after that that hypo fog would creep back in during the afternoon so a week before my next endo appointment I tried doubling my dose and for the first week once again I felt good. Went back to see the doc and told him I upped my dose which was fine with him and he wrote me a new script. The thing was as time went on, I felt plastic (that's the only way I could describe it). After doing some searching online I stumbled across this website. Since then, I put myself back on only 5mcg at 2am and I am feeling better. I think you are right about some doctors becoming more 'aware' of T3. My current endo even surprised me when he looked at my Hashi antibodies the first thing out of his mouth was that I have to cut gluten out if my diet. I had already been gluten free for 3 years. One word of caution to both you and Kari regarding switching to NDT. You need to titrate your dose every two weeks until you feel you are at optimum levels. I was kept at a low dose of Armour too long and it allowed my AntiTPO to skyrocket. That was when if first found out I had Hashi's. Hope this link is helpful.
http://recoveringwitht3.com/blog/backgr ... recordings
Linda
Below is a link to the circadian method. After researching this and reading the forum on facebook, I changed taking my T3 from the morning and after noon (split doses), to taking one full dose at 2:00am and noticed a difference. When I first started dosing with T3 I'd split a 5mcg pill in half taking one at 8am and the second dosing around 2pm. For the first week I didn't need an afternoon nap, but after that that hypo fog would creep back in during the afternoon so a week before my next endo appointment I tried doubling my dose and for the first week once again I felt good. Went back to see the doc and told him I upped my dose which was fine with him and he wrote me a new script. The thing was as time went on, I felt plastic (that's the only way I could describe it). After doing some searching online I stumbled across this website. Since then, I put myself back on only 5mcg at 2am and I am feeling better. I think you are right about some doctors becoming more 'aware' of T3. My current endo even surprised me when he looked at my Hashi antibodies the first thing out of his mouth was that I have to cut gluten out if my diet. I had already been gluten free for 3 years. One word of caution to both you and Kari regarding switching to NDT. You need to titrate your dose every two weeks until you feel you are at optimum levels. I was kept at a low dose of Armour too long and it allowed my AntiTPO to skyrocket. That was when if first found out I had Hashi's. Hope this link is helpful.
http://recoveringwitht3.com/blog/backgr ... recordings
Linda
Great information Linda - thanks. The NDT I'm getting will supply T4 and T3 in one pill - now I wish I had asked for them to be separated, so I could experiment more with dosage. Anyhow, finding the right med and dosage will be a journey, and after what I have been through with MC, that's OK with me. Just glad I have an open minded PCP to help me with prescriptions :).
Love,
Kari
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari, I don't believe you can get NDT separated. I think it's only the synthetic t3 and t4 that is compound able. Besides NDT provides something that a compounded can't. T1 and T2. That is one thing I do not like about my endo is that he doesn't like to prescribe natural desiccated thyroid as he doesn't think there is consistency with this drug. For now, that's ok with me as the Tirosent is a hypoallergenic T4 med. I really noticed a difference when I switched to that. I do find that taking T3 is causing my thyroid to be stimulated and it actually feels sore and a little swollen. I'm glad we are doing an ultrasound next month.
Hmmm - interesting Linda - my PCP specifically asked me if I wanted the prescription for separate or combined pills ???
After Tex mentioned reverse T3, I have been doing a lot more research and came across the following article:
http://chriskresser.com/low-t3-syndrome ... he-thyroid
There is a very interesting discussion section following the article by people with T3 issues. Here is one comment:
"The problem for a lot of people – including myself – is in taking thyroid medication with any T4 in it whatsoever. Those with a poor free T3/reverse T3 ratio need to be on T3-only medication. Many cannot simply add T3 to their T4 regimen or take dessicated thyroid as it will make their problem worse due to the T4 converting to reverse T3 instead of T3 and thereby blocking the thyroid hormone receptors. They are then hypothyroid on a cellular level.
All doctors should be running a free T3 along with a reverse T3 test and understanding what to do with the resulting ratio of free T3 to reverse T3. It will catch many with thyroid hormone resistance that will never be diagnosed through the TSH, free T4 and free T3 alone."
After reading this, I'm thinking of having my reverse T3 tested before starting with the new med. I hope my PCP can relate to this and do the test
.
Kari
After Tex mentioned reverse T3, I have been doing a lot more research and came across the following article:
http://chriskresser.com/low-t3-syndrome ... he-thyroid
There is a very interesting discussion section following the article by people with T3 issues. Here is one comment:
"The problem for a lot of people – including myself – is in taking thyroid medication with any T4 in it whatsoever. Those with a poor free T3/reverse T3 ratio need to be on T3-only medication. Many cannot simply add T3 to their T4 regimen or take dessicated thyroid as it will make their problem worse due to the T4 converting to reverse T3 instead of T3 and thereby blocking the thyroid hormone receptors. They are then hypothyroid on a cellular level.
All doctors should be running a free T3 along with a reverse T3 test and understanding what to do with the resulting ratio of free T3 to reverse T3. It will catch many with thyroid hormone resistance that will never be diagnosed through the TSH, free T4 and free T3 alone."
After reading this, I'm thinking of having my reverse T3 tested before starting with the new med. I hope my PCP can relate to this and do the test
.Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I talked to mine also about testing for RT3 and his reply was that is only done in the hospital. Yeah right. Fortunately my PCP will. He actually notified me today that he has called in a script to a compounding pharmacy for LDN, and I have to be closely monitored with my thyroid levels as it can have a profound effect of it and throw me hyper. Regarding the T3 only route, that is what brought me to the circadian method of dosing. There seems to be so much information out there and endo's in practice have a hard time keeping up with the times.
Kari, if your PCP won't run the tests you want you can get them done at these labs. I have used MyMedLab many times with good results. http://www.stopthethyroidmadness.com/re ... d-labwork/ Deb
Kari,
I am taking NP Thyroid which is considered a generic of Armour. I also take Cortisol for adrenal fatigue. I will have blood tests at the end of this month and I am going to request the RT3 test also. I am doing better. Less cold, less fatigue. I also am taking LDN so it may be helping with the fatigue too.
Pat
I am taking NP Thyroid which is considered a generic of Armour. I also take Cortisol for adrenal fatigue. I will have blood tests at the end of this month and I am going to request the RT3 test also. I am doing better. Less cold, less fatigue. I also am taking LDN so it may be helping with the fatigue too.
Pat
-
Don Allison
- Posts: 3
- Joined: Thu Mar 13, 2014 12:50 am
Kari
You ladies sure have it easier than some of men. I had one fingered a reply to
Your comment about Grave's disease then did something and POOF it was deleted.
I retired from accounting but then started driving. Suddenly in the wee am hours as
I was leaving Disney the road appeared to start going up hill but there was no hill.
Because I could go the route almost a slept it made it home safely. Then found out I
Had Grave's disease and had prisms but in my glasses. Still to be sure I look more than
Once because of those weak eye muscles.
A blessing to read what each of you share. I do not have any words of wisdom
So will continue to read and as maybe a funny note add yes I have sometimes felt it
Might be safer if I had a smaller bowl to sit.
You ladies sure have it easier than some of men. I had one fingered a reply to
Your comment about Grave's disease then did something and POOF it was deleted.
I retired from accounting but then started driving. Suddenly in the wee am hours as
I was leaving Disney the road appeared to start going up hill but there was no hill.
Because I could go the route almost a slept it made it home safely. Then found out I
Had Grave's disease and had prisms but in my glasses. Still to be sure I look more than
Once because of those weak eye muscles.
A blessing to read what each of you share. I do not have any words of wisdom
So will continue to read and as maybe a funny note add yes I have sometimes felt it
Might be safer if I had a smaller bowl to sit.
No idea what you mean!!
Thank you Deb, Pat, Linda and Leah. It sure helps to have supportive PP friends who "speak the same language":).
Don - losing a post has happened to me many times, so no need to feel at a disadvantage. That must have been very scary with your "optical illusion". My biggest problem when I had Graves was that my eyes felt strained and uncomfortable, and my eyelids were always retracted. It was through going to an eye doctor I figured out that I had thyroid problems - he sent me to an endocrinologist.
Love,
Kari
Don - losing a post has happened to me many times, so no need to feel at a disadvantage. That must have been very scary with your "optical illusion". My biggest problem when I had Graves was that my eyes felt strained and uncomfortable, and my eyelids were always retracted. It was through going to an eye doctor I figured out that I had thyroid problems - he sent me to an endocrinologist.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein