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Thyroid Advice - Please
I had a thyroidectomy in 2003. Ever since then I have struggled to find what dose/medicine is the best for me. I have been on Synthroid, Llevoxyl, levothroxine only plus added cytomel here and there in the past but none of those medications made me feel well.
I think I am almost where I need to be but am also very confused. My endochronogist has been completely awful with me.
I am currently taking 1 grain of Naturethroid as well as 25 1/2 mcg of Levothoxine. The totals break out to be:
-1 grain Nature-throid = 38 mcg T4, 9 mcg T3
-1 ½ 25 mcg tablet Levothyroxine= 37.3 T4
Totals: 75.3 mcg T4, 9 mcg T3
My most recent labs on 4/30:
4/30/13 Labs:
Free T4 L 0.77 (0.78-2.19)
TSH L 0.415 (0.465-4.680)
T3, Total 1.160 (0.970-1.690) (I know T3 is basically useless, but my endo said "I don't believe in Free T3")
For the past year we have been slowly increasing the T4 (Levothroxine) to get my T4 levels up. Last year I was ONLY on 1 grain of Naturethroid for a whole year and within that year my health was awful - Had hypoglycemia, sinus congestion, very dizzy, hair falling out, dry skin, brittle nails, etc etc.
While adding the Levo (T4) to the Naturethroid most of my symptoms got better. No more hypoglycemia, no more congestions, but still feel symptomatic at times.
I have tried to just increase my Naturethroid in the past and quit the levothroxine, but immediately my awful symptoms would come back full force (hypoglycemia, congestion)
I recently requested my endo to be put on Westhroid-P since it has no fillers and believe I could be allergic to the Naturethroid. He said he would only prescribe me 3/4 grain of Westhroid-P and 50 mcg of Synthroid. This comes out to:
3/4 Grain Westhroid-P = 28.5 T4, 6.75 T3 Synthroid=50 mcg T4
Totals: 78.5 T4 , 6.75
My concern is this is ONLY increasing my T4 level by 3.2 mcg per day and decreasing my T3 by 2.25
I really need my T4 levels to get where they need to be and feel this new dose is only going to keep me symptomatic. Current symptoms: dizzy spells, brittle nails, hair still falling out not as bad though, and just feeling off in general, also have headaches in the morning and pressure in my head. I really feel this may be due to the fillers. I do not feel hyperactive at all.
I really hope Westhroid-P is the answer Ive been needing for sometime and hope that I can be on only Westthroid in the future, but only time will tell. I know many will frown upon me mixing NTD and Synthetic T4, but this is the only thing that has worked for me in getting my levels where they need to be and truly do feel like im almost there.
Can anyone tell me what they would do in my situation and how much they would increase per day?
For instance, I am thinking about doing the following - Please let me know your thoughts.
Take the following daily:
50 mcg of Sythroid = 50 mcg T4
1 and a half 3/4 grains of Westthroid-P = 42.75 mcg T4, 10.13 T4
Totals: 92.75 T4, 10.13 T3
^This would increase my T4 by 17.25 mcg per day and only increase my T3 by 1mcg per day from what I have been taking.
On only one grain of Naturethroid my Free T3 was always at the lower mid point so I feel this wont put my T3 over range by any means.
Please let me know your thoughts and any suggestions would be great.
Also, my Iron, Adrenals have been tested and my Adrenals are fine. My Iron is as follows. I have been taking 65 mg of Iron every other day.
Total Iron Binding Capacity 381 (265-475)
%Transferrin Saturation 17 L (20-55)
Unsatur Iron Binding Capacity 317 (126-382)
Iron 64 (42-175)
I think I am almost where I need to be but am also very confused. My endochronogist has been completely awful with me.
I am currently taking 1 grain of Naturethroid as well as 25 1/2 mcg of Levothoxine. The totals break out to be:
-1 grain Nature-throid = 38 mcg T4, 9 mcg T3
-1 ½ 25 mcg tablet Levothyroxine= 37.3 T4
Totals: 75.3 mcg T4, 9 mcg T3
My most recent labs on 4/30:
4/30/13 Labs:
Free T4 L 0.77 (0.78-2.19)
TSH L 0.415 (0.465-4.680)
T3, Total 1.160 (0.970-1.690) (I know T3 is basically useless, but my endo said "I don't believe in Free T3")
For the past year we have been slowly increasing the T4 (Levothroxine) to get my T4 levels up. Last year I was ONLY on 1 grain of Naturethroid for a whole year and within that year my health was awful - Had hypoglycemia, sinus congestion, very dizzy, hair falling out, dry skin, brittle nails, etc etc.
While adding the Levo (T4) to the Naturethroid most of my symptoms got better. No more hypoglycemia, no more congestions, but still feel symptomatic at times.
I have tried to just increase my Naturethroid in the past and quit the levothroxine, but immediately my awful symptoms would come back full force (hypoglycemia, congestion)
I recently requested my endo to be put on Westhroid-P since it has no fillers and believe I could be allergic to the Naturethroid. He said he would only prescribe me 3/4 grain of Westhroid-P and 50 mcg of Synthroid. This comes out to:
3/4 Grain Westhroid-P = 28.5 T4, 6.75 T3 Synthroid=50 mcg T4
Totals: 78.5 T4 , 6.75
My concern is this is ONLY increasing my T4 level by 3.2 mcg per day and decreasing my T3 by 2.25
I really need my T4 levels to get where they need to be and feel this new dose is only going to keep me symptomatic. Current symptoms: dizzy spells, brittle nails, hair still falling out not as bad though, and just feeling off in general, also have headaches in the morning and pressure in my head. I really feel this may be due to the fillers. I do not feel hyperactive at all.
I really hope Westhroid-P is the answer Ive been needing for sometime and hope that I can be on only Westthroid in the future, but only time will tell. I know many will frown upon me mixing NTD and Synthetic T4, but this is the only thing that has worked for me in getting my levels where they need to be and truly do feel like im almost there.
Can anyone tell me what they would do in my situation and how much they would increase per day?
For instance, I am thinking about doing the following - Please let me know your thoughts.
Take the following daily:
50 mcg of Sythroid = 50 mcg T4
1 and a half 3/4 grains of Westthroid-P = 42.75 mcg T4, 10.13 T4
Totals: 92.75 T4, 10.13 T3
^This would increase my T4 by 17.25 mcg per day and only increase my T3 by 1mcg per day from what I have been taking.
On only one grain of Naturethroid my Free T3 was always at the lower mid point so I feel this wont put my T3 over range by any means.
Please let me know your thoughts and any suggestions would be great.
Also, my Iron, Adrenals have been tested and my Adrenals are fine. My Iron is as follows. I have been taking 65 mg of Iron every other day.
Total Iron Binding Capacity 381 (265-475)
%Transferrin Saturation 17 L (20-55)
Unsatur Iron Binding Capacity 317 (126-382)
Iron 64 (42-175)
I do not believe I have ever been tested for Ferritin, thanks for that suggestion.
I won't self medicate... I will do what he proposed and hope I feel some relief after switching to Westthroid-P/Synthroid combo. I see a new Dr. June 6. I've been counting down the days. I have been on a 6 mth waiting list. What a long wait!
@flyingfool... I tried to be on Naturethroid only. Every time, I immediately have awful symptoms.. severe chronic congestion.. dry eyes... dizzy...etc. Believe me, I tried to increase the Naturethroid and throw out the Levothroid.
The reason for the thyroidectomy was because of goiter, Large tumor and cysts all over my neck. It was a mess! Took the surgeon 7+ hours to remove everything. From what ive been told, he did a great job, and I believe he did, I just want my thyroid back. He did leave a small piece on the left side. I received an ultra sound of my neck and it showed its still there. Not sure if its grew or shrunk over the years tho. That would actually be kind of interesting to me :)
By the way I have to have another surgery June 12 to remove 3 complex cysts on both ovaries. :( I never had any kids and this is just devastating to me. I know this can be related to thyroid. I will also ask the new doc to do blood work on my sex hormones to see if im lacking a type of sex hormone causing this to happen.
I will ask for the following: (Any others I should add?)
Ferritin
Free T4
Free T3
TSH
Reverse T3
Sex hormones: progesterone, estrogen, testosterone.
Thanks everyone for your detailed response and concerns.
I will let everyone know how it goes with the new doctor. Thanks again, you all are the best.
I won't self medicate... I will do what he proposed and hope I feel some relief after switching to Westthroid-P/Synthroid combo. I see a new Dr. June 6. I've been counting down the days. I have been on a 6 mth waiting list. What a long wait!
@flyingfool... I tried to be on Naturethroid only. Every time, I immediately have awful symptoms.. severe chronic congestion.. dry eyes... dizzy...etc. Believe me, I tried to increase the Naturethroid and throw out the Levothroid.
The reason for the thyroidectomy was because of goiter, Large tumor and cysts all over my neck. It was a mess! Took the surgeon 7+ hours to remove everything. From what ive been told, he did a great job, and I believe he did, I just want my thyroid back. He did leave a small piece on the left side. I received an ultra sound of my neck and it showed its still there. Not sure if its grew or shrunk over the years tho. That would actually be kind of interesting to me :)
By the way I have to have another surgery June 12 to remove 3 complex cysts on both ovaries. :( I never had any kids and this is just devastating to me. I know this can be related to thyroid. I will also ask the new doc to do blood work on my sex hormones to see if im lacking a type of sex hormone causing this to happen.
I will ask for the following: (Any others I should add?)
Ferritin
Free T4
Free T3
TSH
Reverse T3
Sex hormones: progesterone, estrogen, testosterone.
Thanks everyone for your detailed response and concerns.
I will let everyone know how it goes with the new doctor. Thanks again, you all are the best.
I can't see any concern with that proposed increase: however, it is never a good idea to self medicate. Best to do it in cooperation with the doctor.
As for your iron, I did see those results, and commented that you are low in iron. I suggest that in the future you request to be tested for ferritin each time, rather than all the others. Make sure the new doctor also tests for Free T3 and Free T4 each time you go in for tests.
Please let us know how it goes with the new doctor.
As for your iron, I did see those results, and commented that you are low in iron. I suggest that in the future you request to be tested for ferritin each time, rather than all the others. Make sure the new doctor also tests for Free T3 and Free T4 each time you go in for tests.
Please let us know how it goes with the new doctor.
First, why did you have your thyroid removed?
In general I agree with Gimel.
I would not, nor can anyone here recommend self medicating yourself. Some have done it as Drs seem to be so out of touch with how to properly treat thyroid. But you are far better off finding a good Dr who you can work with.
Like Gimel said. If your Dr who has been slow and ineffective at treating you and does not believe in Free T3 are ALL signs that you need to find another Dr. ASAP!
You are lucky to have an appointment and at least one other Gimel recommended thyroid Dr's. Hopefully you will be able to find one of these Drs to be helpful to you.
Now as to your plan. Yes it is important to have a plan when going into the Dr.
Hopefully you have a long list of blood lab results and you also have the dosages of medications you were taking at those times. It is best to have written down your symptoms and how you feel at those levels etc.
You already know yourself pretty well. You have established that you seem to need both a combination of synthetic T4 and NDT.
The fact that you are slowly seem to be getting better as the FT4 levels are rising is the real key. So that should be pretty convincing evidence that you should continue on that same direction. The plan of slowly stepping up the T4 dosage until you either feel well or you reach 50% of the FT4 range seems completely reasonable. That is what I would recommend that you propose and strongly advocate for with the new Endo.
One question. Have you ever considered an increase in the NDT? yes it has a lot more T3 in it than human thyroid. But it still has a fair amount actually I bleive a majority of T4. Just a thought for future consideration
Also as I'm sure you may already be aware. When you are on any thryoid med but especially when you are taking a med with T3 in it, that TSH often if not usually becomes supressed. THus rendering TSH useless.
Also unless you've shown severe sensitivity or reactions to increased dosages, it seems like your current Dr is using very small increases in T4. Which is OK but is very slow. As gimel stated above with T4 increases can come as soon as every 6 weeks. It appears your current Dr is making them a lot longer between increases than that despite you being symptomatic.
Finally and this is my opinion. But I believe that any Dr who prescribes a medicationi with T3 in it and is not regularly testing Free T3 borders on negligence!
In general I agree with Gimel.
I would not, nor can anyone here recommend self medicating yourself. Some have done it as Drs seem to be so out of touch with how to properly treat thyroid. But you are far better off finding a good Dr who you can work with.
Like Gimel said. If your Dr who has been slow and ineffective at treating you and does not believe in Free T3 are ALL signs that you need to find another Dr. ASAP!
You are lucky to have an appointment and at least one other Gimel recommended thyroid Dr's. Hopefully you will be able to find one of these Drs to be helpful to you.
Now as to your plan. Yes it is important to have a plan when going into the Dr.
Hopefully you have a long list of blood lab results and you also have the dosages of medications you were taking at those times. It is best to have written down your symptoms and how you feel at those levels etc.
You already know yourself pretty well. You have established that you seem to need both a combination of synthetic T4 and NDT.
The fact that you are slowly seem to be getting better as the FT4 levels are rising is the real key. So that should be pretty convincing evidence that you should continue on that same direction. The plan of slowly stepping up the T4 dosage until you either feel well or you reach 50% of the FT4 range seems completely reasonable. That is what I would recommend that you propose and strongly advocate for with the new Endo.
One question. Have you ever considered an increase in the NDT? yes it has a lot more T3 in it than human thyroid. But it still has a fair amount actually I bleive a majority of T4. Just a thought for future consideration
Also as I'm sure you may already be aware. When you are on any thryoid med but especially when you are taking a med with T3 in it, that TSH often if not usually becomes supressed. THus rendering TSH useless.
Also unless you've shown severe sensitivity or reactions to increased dosages, it seems like your current Dr is using very small increases in T4. Which is OK but is very slow. As gimel stated above with T4 increases can come as soon as every 6 weeks. It appears your current Dr is making them a lot longer between increases than that despite you being symptomatic.
Finally and this is my opinion. But I believe that any Dr who prescribes a medicationi with T3 in it and is not regularly testing Free T3 borders on negligence!
Gimel I did have my iron test posted above. Also my vit d was low am on 50k units a wk (this sun will be my 3rd dose) my b12 is great...would taking what I suggested above be ok? I have appointment june 6 with a very good thyroid doctor. I have good hopes for him and ive never felt that way.
I just need to increase somewhere until my appointment...
I just need to increase somewhere until my appointment...
I totally don't understand how you could still be so low in the range for Free T4 after 9 months of testing and med adjustment. Your doctor doesn't seem to be very effective at getting you well. Even with a T4 med, testing and adjusting meds can be done every 4-6 weeks. What was he waiting on?
Also, since he has said he doesn't believe in Free T3 that reveals a lack of understanding of one of the most important thyroid tests. Free T3 largely regulates metabolism and many other body functions. Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. The doctor should also have tested for ferritin, along with the full iron test panel (which indicates iron deficiency), and the need to supplement. Ferritin that is too low in the range is detrimental to effective treatment of hypothyroidism because it affects the conversion of T4 to T3. You should also have been tested for Vitamin D and B12 to assure they are not too low in the range.
Based on all you have mentioned, you certainly do need to find a good thyroid doctor. Doesn't have to be an Endo, just a doctor that will treat clinically, as described in the link I gave you above. Please read that link before we go further..
We hear that so many Endos specialize in diabetes, not thyroid. Also, many of them have the "Immaculate TSH Belief" and only want to test and medicate a patient based on TSH. That simply does not work. Some will test beyond TSH, for Free T4, and then use "Reference Range Endocrinology" and tell you that a test result that falls in the so-called "normal" range is adequate. That also frequently does not work.
So, I have a suggestion for you. I have the name of a member recommended Endo in St. Louis. You can call and find out how long for an appointment, if you are interested. Along with that you could call the other Endo's office and tell them you have an appointment but you have two questions to ask before that. Usually that will get a nurse on the phone with you. Then ask if the doctor is willing to treat clinically by testing and adjusting Free T3 and Free T4 s necessary to relieve symptoms, rather than medicating based on TSH. Second, ask if the doctor is willing to prescribe T3 type meds, rather than T4 only. If either answer is no, then I would not recommend seeing that doctor.
After considering this, let me know if you want the doctor's name.
Also, since he has said he doesn't believe in Free T3 that reveals a lack of understanding of one of the most important thyroid tests. Free T3 largely regulates metabolism and many other body functions. Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. The doctor should also have tested for ferritin, along with the full iron test panel (which indicates iron deficiency), and the need to supplement. Ferritin that is too low in the range is detrimental to effective treatment of hypothyroidism because it affects the conversion of T4 to T3. You should also have been tested for Vitamin D and B12 to assure they are not too low in the range.
Based on all you have mentioned, you certainly do need to find a good thyroid doctor. Doesn't have to be an Endo, just a doctor that will treat clinically, as described in the link I gave you above. Please read that link before we go further..
We hear that so many Endos specialize in diabetes, not thyroid. Also, many of them have the "Immaculate TSH Belief" and only want to test and medicate a patient based on TSH. That simply does not work. Some will test beyond TSH, for Free T4, and then use "Reference Range Endocrinology" and tell you that a test result that falls in the so-called "normal" range is adequate. That also frequently does not work.
So, I have a suggestion for you. I have the name of a member recommended Endo in St. Louis. You can call and find out how long for an appointment, if you are interested. Along with that you could call the other Endo's office and tell them you have an appointment but you have two questions to ask before that. Usually that will get a nurse on the phone with you. Then ask if the doctor is willing to treat clinically by testing and adjusting Free T3 and Free T4 s necessary to relieve symptoms, rather than medicating based on TSH. Second, ask if the doctor is willing to prescribe T3 type meds, rather than T4 only. If either answer is no, then I would not recommend seeing that doctor.
After considering this, let me know if you want the doctor's name.
Yes, your FT4 is very low. Looks like you could use an increase. Also, make sure you have your new dr test Free T3. My old dr didn't believe in FreeT3 either. I have found it to be the lab number that correlates the best with symptoms.
Also, get very symptomatic when my Free T4s are below range. I really want to get them in range. Not only in range but mid level. That's my main focus.
We have been increasing the Levothroxine after every lab work. I started of only half of the 25 mcg of levo with Naturethroid and finally at 25 and half a day with the 1 grain of naturethroid. We have been doing this for about 9 mths now...
Also, I am going to see a great, highly recommended thyroid doctor June 6, but want to get a feel of what I should take so I can present him with a plan.
Also, I am going to see a great, highly recommended thyroid doctor June 6, but want to get a feel of what I should take so I can present him with a plan.
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