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Why isn't thyroxine working for me
I was told I am hypothyroid in May 2012 and I felt good for about a month after I started and now I have started to go downhill in how I feel. I have been taking my thyroxine but I want to stop taking it because I feel better off it and worse on it when I'm taking it I gain weight and my skin goes all dry I lose more blood on my period which goes out of sync by 10 or more days and I stop sweating and I get sleepy and brain dead as if I'm going to lose consciousness
When the thyroxine was stopped before my weight was lighter I could stay up all night and my skin is softer but I know if I tell the doctor how much better I feel off it I know it will mean more tests and none of the doctors understanding how I feel
Not sure what I should do right now
May 2012 TSH 76 (0.20-4.20)
Free T4 11.30 (12.00-22.00)
Thyroxine 25 for 3 weeks, 50 for 3 weeks, 75 for 3 months
July 2012 TSH 4.10 (0.20-4.20)
Thyroxine 100
September 2012 TSH 3.80 (0.20-4.20)
Thyroxine 125
Ferritin 22 (30.00-400.00)
Ferrous fumarate 3 times a day
December 2012 TSH 2.50 (0.20-4.20)
Thyroxine still 125
January 2013 TSH 2.70 (0.20-4.20)
Thyroxine still 125
March 2013 TSH 1.97 (0.20-4.20)
TPO 31 (<34)
Ferritin 29 (30.00-400.00)
Thyroxine 125
September 2013 TSH 3.01 (0.20-4.20)
Thyroxine still 125
April 2014 TSH 0.03 (0.20-4.20)
Free T4 23.70 (12.00-22.00)
Free T3 6.90 (3.90-6.70)
TPO 904 (<34)
Thyroxine stopped by doctor
Ferritin 15 (30.00-400.00)
Vitamin D 54.30 (25.00-75.00 suboptimal Vitamin D)
Vitamin B12 326 (180.00-900.00)
Folate 4.50 (4.60-18.70)
September 2014 TSH 12 (0.20-4.20)
Free T4 11.20 12.00-22.00)
Free T3 7.04 (3.90-6.70)
Thyroxine 50 and then 100
Vitamin D 68.50 (25.00-75.00 suboptimal Vitamin D)
Vitamin B12 415 (180.00-900.00)
Folate 4.90 (4.60-18.70)
November 2014 TSH 5.80 (0.20-4.20)
Free T4 13.40 (12.00-22.00)
Free T3 4.30 (3.90-6.70)
Thyroxine 125
Coeliac screen negative
January 2015 TSH 2.75 (0.20-4.20)
Free T4 15.90 (12.00-22.00)
Free T3 4.00 (3.90-6.70)
Thyroxine still 125
Ferritin 30 (30.00-400.00)
When the thyroxine was stopped before my weight was lighter I could stay up all night and my skin is softer but I know if I tell the doctor how much better I feel off it I know it will mean more tests and none of the doctors understanding how I feel
Not sure what I should do right now
May 2012 TSH 76 (0.20-4.20)
Free T4 11.30 (12.00-22.00)
Thyroxine 25 for 3 weeks, 50 for 3 weeks, 75 for 3 months
July 2012 TSH 4.10 (0.20-4.20)
Thyroxine 100
September 2012 TSH 3.80 (0.20-4.20)
Thyroxine 125
Ferritin 22 (30.00-400.00)
Ferrous fumarate 3 times a day
December 2012 TSH 2.50 (0.20-4.20)
Thyroxine still 125
January 2013 TSH 2.70 (0.20-4.20)
Thyroxine still 125
March 2013 TSH 1.97 (0.20-4.20)
TPO 31 (<34)
Ferritin 29 (30.00-400.00)
Thyroxine 125
September 2013 TSH 3.01 (0.20-4.20)
Thyroxine still 125
April 2014 TSH 0.03 (0.20-4.20)
Free T4 23.70 (12.00-22.00)
Free T3 6.90 (3.90-6.70)
TPO 904 (<34)
Thyroxine stopped by doctor
Ferritin 15 (30.00-400.00)
Vitamin D 54.30 (25.00-75.00 suboptimal Vitamin D)
Vitamin B12 326 (180.00-900.00)
Folate 4.50 (4.60-18.70)
September 2014 TSH 12 (0.20-4.20)
Free T4 11.20 12.00-22.00)
Free T3 7.04 (3.90-6.70)
Thyroxine 50 and then 100
Vitamin D 68.50 (25.00-75.00 suboptimal Vitamin D)
Vitamin B12 415 (180.00-900.00)
Folate 4.90 (4.60-18.70)
November 2014 TSH 5.80 (0.20-4.20)
Free T4 13.40 (12.00-22.00)
Free T3 4.30 (3.90-6.70)
Thyroxine 125
Coeliac screen negative
January 2015 TSH 2.75 (0.20-4.20)
Free T4 15.90 (12.00-22.00)
Free T3 4.00 (3.90-6.70)
Thyroxine still 125
Ferritin 30 (30.00-400.00)
What sort of documentation are you looking for in regard to T4 to T3?
The thyroid hormone is surrounded or conneted to Iodine.
T4 has four (4) iodine atoms attached to it. The conversion process strips one Iodine molecule away thus leaving only 3 iodine and it name T3.
The conversion happens all over but primarily in the liver.
TSH is a worthless test. A screening test at best. But once a thyroid issue is understood. TSH is virtually worthless. What ultimately matters is how you feel. Thus your clinical response is what is most important and the elimination of symptoms. However the measurement of both Free T4 and Free T3 does offer MUCH better indication of your true thyroid level as these are the two components your body actually uses.
ONLY Free T4 (FT4) is used and available to be converted into T3. Any hormone that is attached to a protein is unusable.
Similarly some of the converted T3 becomes attached to a protein and again it becomes unusable and useless. ONLY the Free T3 (FT3) is available for use at the cellular level.
Since it is ONLY the FREE T3 that is ultimately used by the body, the level of Free T3 is what is most closely correlates to symptoms.
Now then we also have to really understand how the "reference" or "normal" ranges are determined. And this is flawed.
First of all the word "normal" is a mathmatical statistical term. It has NOTHING to do with feeling adequate.
A "normal" statistical distribution is a bell shaped curve. In the case for the "normal" or reference range. What they do is take all the people tested for the specific test. THen they eliminate the very lowest 2.5% and the very highest 2.5%. Thus leaving the remaining population of those tested to be in the 95% of the "normal" or reference range.
Now why this is flawed is that FAR more people are Hypo (low) thyroid than 2.5%. Thus a TON of people who are Hypo are considered "normal" or fall within this 95% window of the reference or normal range.
Furthermore. Consider who is tested for thyroid? Well of course it is people who are suspected that they might have a thyroid problem.
So what this means is that the field of 100% of the population getting thyroid tests. ALL or almost all of them are suspected of abnormal thyroid. So we sart with a pool of the population which is already prone to being hypo or troubled thyroid. THEN they only eliminate the lowest and highest 2.5% each of the people.
So in essence they are taking a population of likely sick people. and then twlling you that if you are not among the sickest lowest 2.5% or the highest 2.5%, then you are perfectly fine. You are just as sick as the other 95% of the people! How nice!
This why on this forum you will see the "target" or rule of thumb required in order to feel well is to have your free thyroid levels of both FT4 and FT3 to be mid range or higher. Specifically, many have found the need to have BOTH of the following in order to feel well:
1) Free T4 to be at the middle of the range or 50% of the range if not even a bit higher.
AND- that means in addition
2) Free T3 to be in the UPPER 1/2 to 1/3 of the range. This means 50% to 67% of the range. Most seem to need it closer to the 67% of the range.
Notice that both of these are WELL up into the range. This is because of the flawed method to create the reference range. And the failed understanding of the medical community to differentiate the mathmatical term "normal" from the generic sense of feeling well (normal).
Hope that helps some.
The thyroid hormone is surrounded or conneted to Iodine.
T4 has four (4) iodine atoms attached to it. The conversion process strips one Iodine molecule away thus leaving only 3 iodine and it name T3.
The conversion happens all over but primarily in the liver.
TSH is a worthless test. A screening test at best. But once a thyroid issue is understood. TSH is virtually worthless. What ultimately matters is how you feel. Thus your clinical response is what is most important and the elimination of symptoms. However the measurement of both Free T4 and Free T3 does offer MUCH better indication of your true thyroid level as these are the two components your body actually uses.
ONLY Free T4 (FT4) is used and available to be converted into T3. Any hormone that is attached to a protein is unusable.
Similarly some of the converted T3 becomes attached to a protein and again it becomes unusable and useless. ONLY the Free T3 (FT3) is available for use at the cellular level.
Since it is ONLY the FREE T3 that is ultimately used by the body, the level of Free T3 is what is most closely correlates to symptoms.
Now then we also have to really understand how the "reference" or "normal" ranges are determined. And this is flawed.
First of all the word "normal" is a mathmatical statistical term. It has NOTHING to do with feeling adequate.
A "normal" statistical distribution is a bell shaped curve. In the case for the "normal" or reference range. What they do is take all the people tested for the specific test. THen they eliminate the very lowest 2.5% and the very highest 2.5%. Thus leaving the remaining population of those tested to be in the 95% of the "normal" or reference range.
Now why this is flawed is that FAR more people are Hypo (low) thyroid than 2.5%. Thus a TON of people who are Hypo are considered "normal" or fall within this 95% window of the reference or normal range.
Furthermore. Consider who is tested for thyroid? Well of course it is people who are suspected that they might have a thyroid problem.
So what this means is that the field of 100% of the population getting thyroid tests. ALL or almost all of them are suspected of abnormal thyroid. So we sart with a pool of the population which is already prone to being hypo or troubled thyroid. THEN they only eliminate the lowest and highest 2.5% each of the people.
So in essence they are taking a population of likely sick people. and then twlling you that if you are not among the sickest lowest 2.5% or the highest 2.5%, then you are perfectly fine. You are just as sick as the other 95% of the people! How nice!
This why on this forum you will see the "target" or rule of thumb required in order to feel well is to have your free thyroid levels of both FT4 and FT3 to be mid range or higher. Specifically, many have found the need to have BOTH of the following in order to feel well:
1) Free T4 to be at the middle of the range or 50% of the range if not even a bit higher.
AND- that means in addition
2) Free T3 to be in the UPPER 1/2 to 1/3 of the range. This means 50% to 67% of the range. Most seem to need it closer to the 67% of the range.
Notice that both of these are WELL up into the range. This is because of the flawed method to create the reference range. And the failed understanding of the medical community to differentiate the mathmatical term "normal" from the generic sense of feeling well (normal).
Hope that helps some.
Thank you
I would like documentation about conversion of T3 please
I can try to ask the doctor for T3 at my next appointment but they are not increasing my dose of thyroxine
I would like documentation about conversion of T3 please
I can try to ask the doctor for T3 at my next appointment but they are not increasing my dose of thyroxine
Thank you
doctor won't increase my thyroid meds because they now think I'm on the correct dose with the TSH in range
I will look at making all the necessary improvements to B12, ferritin, folate and D
doctor won't increase my thyroid meds because they now think I'm on the correct dose with the TSH in range
I will look at making all the necessary improvements to B12, ferritin, folate and D
COMMUNITY LEADER
Since you're already on a T4 med, you'll be better off trying to add a synthetic T3 than trying to change to desiccated, which is even harder to get in U.K. No point in setting yourself for a bigger battle than necessary.
Some doctors will agree to a small amount of T3 it you can prove you need it, though you may have to jump through some hoops to get it.
Ferritin is the iron storage hormone, so it's really iron, nor ferritin that you need to metabolize thyroid hormones. Iron is used for the conversion of the storage hormone FT4 to the usable FT3...
Some doctors will agree to a small amount of T3 it you can prove you need it, though you may have to jump through some hoops to get it.
Ferritin is the iron storage hormone, so it's really iron, nor ferritin that you need to metabolize thyroid hormones. Iron is used for the conversion of the storage hormone FT4 to the usable FT3...
Ferritin is necessary for the proper metabolism of Thyroid hormone. So it is important to get your Freeitin levels up significantly. This alone along with Selenium MAY help your conversion. Your T4 levels are also not very high so there is not a ton of hormone to convert to begin with.
You may be a good candidate if you can talk your Dr into prescribing Natural Dessicated Thyroid (Armour, Nature THyroid EFRA). This has a significant amount of T3 in it. You may face a battle in the UK for anything with T3 in it.
At the very least you must get an increase to your T4 medication. And it is often common for people to feel worse when starting to take thyroid medication or if the jump in dosage it too large. So at the very least a reasonable common bump up in your T4 medication is worth the discussion with your Dr.
Also I agree the B-12 level should be ideally over 700 to have much of a chance of feeling better with regard to B-12.
Iron, B-12 and D3 all were low. And all will cause symptom of fatigue if deficient. Along with Hypo. So you have a lot of "piling on" that can be going on.
You may be a good candidate if you can talk your Dr into prescribing Natural Dessicated Thyroid (Armour, Nature THyroid EFRA). This has a significant amount of T3 in it. You may face a battle in the UK for anything with T3 in it.
At the very least you must get an increase to your T4 medication. And it is often common for people to feel worse when starting to take thyroid medication or if the jump in dosage it too large. So at the very least a reasonable common bump up in your T4 medication is worth the discussion with your Dr.
Also I agree the B-12 level should be ideally over 700 to have much of a chance of feeling better with regard to B-12.
Iron, B-12 and D3 all were low. And all will cause symptom of fatigue if deficient. Along with Hypo. So you have a lot of "piling on" that can be going on.
COMMUNITY LEADER
Yes, we know that doctors, particularly, those in UK think thyroxine is the gold standard for hypothyroid... same here in the U.S, but there are doctors who are "up" enough on thyroid treatment to realize that not everyone converts adequately and do prescribe T3 medication. We do know that there are ways to get around the NHS guideline of using thyroxine, only, but it's not always easy.
One thing we don't often see from our members in U.K. is that your doctor is testing Free T3, so maybe the fact that your doctor is testing that on a regular basis indicates that s/he is more open to T3 treatment than others might be. All you can do is ask and if refused, try to find a different doctor. We've had some members who have had to go private in order to get adequate treatment; others have simply demanded the proper treatment.
We can provide you with documentation regarding conversion and the use of T3 med if you think that would help.
Supplementing with selenium can also help with the conversion of Free T4 to Free T3. 200 mcg is the recommended dosage.
I do, highly recommend supplementing with B-12; while it won't alleviate your hypo symptoms, it will help with those symptoms caused by B-12 deficiency. Sometimes, no matter how healthy we think we're eating, we aren't getting enough of certain nutrients. Apparently, folate is one of those, for you. I'd recommend supplementing that, as well.
Since you're already supplementing iron and your ferritin level isn't coming up, you should ask your doctor for a complete iron panel. That should include iron, Total Iron Binding Capacity (TIBC), Transferrin, Tranferrin Saturation (%). Some people get better absorption from liquid iron supplements than they do from pill types, so maybe you want to experiment with different forms.
Last, but certainly, not least is to make sure you're taking your thyroxine correctly - first thing in the morning, then not eating/drinking anything but water for at least 30-60 minutes afterward. Even more important is not taking any supplements, particularly, minerals, such as calcium, iron, magnesium, etc, within 4 hours of your thyroxine, as they can prevent proper absorption of the thyroid medication.
One thing we don't often see from our members in U.K. is that your doctor is testing Free T3, so maybe the fact that your doctor is testing that on a regular basis indicates that s/he is more open to T3 treatment than others might be. All you can do is ask and if refused, try to find a different doctor. We've had some members who have had to go private in order to get adequate treatment; others have simply demanded the proper treatment.
We can provide you with documentation regarding conversion and the use of T3 med if you think that would help.
Supplementing with selenium can also help with the conversion of Free T4 to Free T3. 200 mcg is the recommended dosage.
I do, highly recommend supplementing with B-12; while it won't alleviate your hypo symptoms, it will help with those symptoms caused by B-12 deficiency. Sometimes, no matter how healthy we think we're eating, we aren't getting enough of certain nutrients. Apparently, folate is one of those, for you. I'd recommend supplementing that, as well.
Since you're already supplementing iron and your ferritin level isn't coming up, you should ask your doctor for a complete iron panel. That should include iron, Total Iron Binding Capacity (TIBC), Transferrin, Tranferrin Saturation (%). Some people get better absorption from liquid iron supplements than they do from pill types, so maybe you want to experiment with different forms.
Last, but certainly, not least is to make sure you're taking your thyroxine correctly - first thing in the morning, then not eating/drinking anything but water for at least 30-60 minutes afterward. Even more important is not taking any supplements, particularly, minerals, such as calcium, iron, magnesium, etc, within 4 hours of your thyroxine, as they can prevent proper absorption of the thyroid medication.
Thank you Barb for your help :)
I don't know how to ask my doctor for T3, they have said thyroxine is gold standard for hypothyroid
I haven't supplemented B12 so I will do this
The doctor told me my folate was only a few points under range and left it to me to correct it with diet but I eat healthily and get lots of salad and greens into my diet
I don't know why my ferritin isn't increasing because I've been on ferrous fumarate for years so maybe there is a better alternative somewhere
I don't know how to ask my doctor for T3, they have said thyroxine is gold standard for hypothyroid
I haven't supplemented B12 so I will do this
The doctor told me my folate was only a few points under range and left it to me to correct it with diet but I eat healthily and get lots of salad and greens into my diet
I don't know why my ferritin isn't increasing because I've been on ferrous fumarate for years so maybe there is a better alternative somewhere
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Rule of thumb (where most of us find we feel best) is for FT4 to be at about mid range. Your FT4 is only 39% of its range, so you can use a boost in your thyroxine. Rule of thumb for FT3 is upper half to upper third of its range and yours is a very dismal 4% of the range. That's an indication that you aren't converting the FT4 storage hormone to the active FT3, which is used by the individual cells in your body. You should ask your doctor for a small dose of T3 medication to help bring that up as that would help alleviate your symptoms.
Next is your Vitamin B-12 level... at the 415 level it was in September 2014, it's way too low. If you didn't start supplementing, you need to. Many countries consider 500 to be the bottom of the range. The range at my lab is 200-1100, but they put a note on the report saying that anything under 500 can cause symptoms of deficiency. Vitamin B-12 deficiency can cause severe fatigue, brain fog and other symptoms.
Your folate was below range. Again, if you didn't start supplementing, you need to. Folate deficiency causes symptoms similar to B-12 deficiency.
Your ferritin level has been consistently, and still is, way too low. You should be supplementing with iron. Iron is necessary for the metabolism of thyroid hormones and is used in the conversion of FT4 to FT3.
Your Vitamin D wasn't "horrible" in Sept 2014, but on the low side. You should be supplementing that, as well. Vitamin D is needed for metabolism of thyroid hormones.