Aa
1 Year Post Dx
Hello-I hope that someone can shed some light on this for me.
I was diagnosed a year ago with Hypothyroid/Hashimotos. At that time labs were:
TSH-5.48
T4 Free-1.15
Triiodothyronine Free-2.8
I was started on 25 mg Levothyroxine and built up to 50mg
Asked for an endocrinologist. At first visit labs were:
TSH-2.73
T4 Free-1.58
TPO AB 559
Triiodothyronine Free-2.2
At that time Cytomel 5 mg was added. Still feeling bad. I asked for Synthroid and dose was raised from 75 mg to 100mg
My last visit in April results were as follows"
TSH-5.320
T4 Free-1.24
Triiodothyronine Free-2.7
Dose was raised to 112mg, still to take Cytomel 5mg also.
It has been two weeks now on this dose.
So-I am feeling lousy. I start to feel better then seem to crash. I feel exhausted, can't think, muscle aches and pains, tingling in legs and feet hurt again. I fall asleep with the light on and my book in the bed. They want to see me every 4 months and this time I said no-I will return in two months for a recheck as this seems to be taking entirely too long. I am very active at age 64. I get plenty of exercise gardening, yard keeping and I work as a part time gardener. Oh- I have also gained 22 pounds in the last two years and can't seem to take it off no matter what I eat. And I have been trying. I feel like my life is on hold as functioning in daily life is getting harder and harder. There is no quality of life here.
Any opinions or suggestions would be appreciated. I am at my wit's end. They don't seem to understand how I feel.
I was diagnosed a year ago with Hypothyroid/Hashimotos. At that time labs were:
TSH-5.48
T4 Free-1.15
Triiodothyronine Free-2.8
I was started on 25 mg Levothyroxine and built up to 50mg
Asked for an endocrinologist. At first visit labs were:
TSH-2.73
T4 Free-1.58
TPO AB 559
Triiodothyronine Free-2.2
At that time Cytomel 5 mg was added. Still feeling bad. I asked for Synthroid and dose was raised from 75 mg to 100mg
My last visit in April results were as follows"
TSH-5.320
T4 Free-1.24
Triiodothyronine Free-2.7
Dose was raised to 112mg, still to take Cytomel 5mg also.
It has been two weeks now on this dose.
So-I am feeling lousy. I start to feel better then seem to crash. I feel exhausted, can't think, muscle aches and pains, tingling in legs and feet hurt again. I fall asleep with the light on and my book in the bed. They want to see me every 4 months and this time I said no-I will return in two months for a recheck as this seems to be taking entirely too long. I am very active at age 64. I get plenty of exercise gardening, yard keeping and I work as a part time gardener. Oh- I have also gained 22 pounds in the last two years and can't seem to take it off no matter what I eat. And I have been trying. I feel like my life is on hold as functioning in daily life is getting harder and harder. There is no quality of life here.
Any opinions or suggestions would be appreciated. I am at my wit's end. They don't seem to understand how I feel.
OK thanks. Good to know. I did discuss this with the endo dr. and he said it seems like a lot of iodine but if it makes you feel better take it. Then when my tests got worse, I quit taking it, thinking maybe it was messing up my results. Anyway, I feel better taking it. I am juggling listening to my body and what the Dr. says. I think that I better listen to my body.
Thank you for your answer, as it makes me feel like I am not really making myself worse. I feel like I am in a minefield. I just need to settle down and I will.
Thank you for your answer, as it makes me feel like I am not really making myself worse. I feel like I am in a minefield. I just need to settle down and I will.
COMMUNITY LEADER
Iodine is, typically, contra-indicated with Hashimoto's, because it, reportedly, makes the autoimmune reaction worse, however, we've had some members who have used it successfully - usually under a doctor's supervision.
I don't avoid it, because my thyroid is, for all practical purposes, "dead" - as in it produces nothing and has atrophied (might as well not be there), plus my antibodies have declined to < 100, which I take to mean they've gone into remission because they've done all the damage they can do and there's nothing left to attack. I have a multi that contains iodine, also and when I take it on a regular basis, I find that I, not only feel better, but I lose weight, as well. I can't consider that a bad thing.
My advice on that is to discuss it with your doctor and see what she says. If something makes you feel better, I'm, typically all for it. If, at any time, you start feeling worse, I'd stop taking it to see if that might be the cause and if so, don't take it anymore.
I feel the same way with diets -- if eliminating something from your diet makes you feel better (like eliminating/limiting white bread and sugar, etc makes me feel better), then do it, but if you don't notice a difference and it causes a hassle in the household (this does for me and it's very difficult, but well worth the effort), then don't bother. Just don't be disappointed when adjusting your diet (aside for the iodine aspect) doesn't affect your Hashimoto's.
I don't avoid it, because my thyroid is, for all practical purposes, "dead" - as in it produces nothing and has atrophied (might as well not be there), plus my antibodies have declined to < 100, which I take to mean they've gone into remission because they've done all the damage they can do and there's nothing left to attack. I have a multi that contains iodine, also and when I take it on a regular basis, I find that I, not only feel better, but I lose weight, as well. I can't consider that a bad thing.
My advice on that is to discuss it with your doctor and see what she says. If something makes you feel better, I'm, typically all for it. If, at any time, you start feeling worse, I'd stop taking it to see if that might be the cause and if so, don't take it anymore.
I feel the same way with diets -- if eliminating something from your diet makes you feel better (like eliminating/limiting white bread and sugar, etc makes me feel better), then do it, but if you don't notice a difference and it causes a hassle in the household (this does for me and it's very difficult, but well worth the effort), then don't bother. Just don't be disappointed when adjusting your diet (aside for the iodine aspect) doesn't affect your Hashimoto's.
Do you avoid iodine? I have a liquid multi-supplement that does make me feel better physically and mentally but it has 177mcg of iodine from kelp. Now I am afraid to take as I don't want to make myself worse. I know that it is in fish and shellfish but I only eat that occasionally. I certainly don't want to make things worse.
I guess that I just have to deal with the Hashimotos but will just listen to my body and see what makes me feel better. I have to do what I can.
I guess that I just have to deal with the Hashimotos but will just listen to my body and see what makes me feel better. I have to do what I can.
COMMUNITY LEADER
Well, here comes the bad news... There have been all kinds of things tried and there are some that will tell you that Hashimoto's can be cured or that you can lower can "lower your antibody counts", etc... don't buy into that because you'll set yourself up for a lot of big disappointment.
There is not cure for Hashimoto's. It's an autoimmune disease and once you have it, you have it for life.
Some studies have shown that taking 200 mcg selenium/day can lower antibody counts by 20%... that's all well and good, but you still have the other 80% doing their dirty work, so it's not going to slow the Hashimoto's down by much at all. I've taken selenium for about 6 yrs - ever since I was diagnosed with Hashimoto's and my antibody counts didn't start changing until my thyroid was basically "dead" - meaning it produces nothing at all anymore, which is what Hashimoto's does - it kills the thyroid. I have to tell you - it's easier to regulate thyroid med once the thyroid isn't producing anything, because then all you have is the med you take every day and that's what you depend on.
Some people will tell you that if you go gluten free, it'll do wonders for you; you'll lose weight, lower antibody counts - no end to the good things... don't believe that either. There are no scientific studies that back it up. Some people are sensitive to gluten and find that if they go gluten free or limit the amount of gluten they eat, they do feel better.
Because of my peripheral neuropathy, caused from untreated Pernicious Anemia, I was advised to eat an anti-inflammatory diet, so I, personally, feel better if I limit the amount "white" gluten I eat - that's things that contain white flour and I've extended that include white rice and sugar. Eliminating/limiting these things has nothing to do with my Hashimoto's, but it does have to do with making me healthier, overall and I lost 22 lbs in the process, so that was a good thing.
Another thing you should be made aware of is that once we have one autoimmune disease the chances of getting another are greater than if we didn't have the first one. For instance, I have Hashimoto's and Pernicious Anemia. Another thing is that autoimmune diseases tend to run in families, but not every family member gets the same disease - again, I have the Hashimoto's and PA, my son has Type I diabetes and my daughter has Lupus - all are autoimmune.
There is not cure for Hashimoto's. It's an autoimmune disease and once you have it, you have it for life.
Some studies have shown that taking 200 mcg selenium/day can lower antibody counts by 20%... that's all well and good, but you still have the other 80% doing their dirty work, so it's not going to slow the Hashimoto's down by much at all. I've taken selenium for about 6 yrs - ever since I was diagnosed with Hashimoto's and my antibody counts didn't start changing until my thyroid was basically "dead" - meaning it produces nothing at all anymore, which is what Hashimoto's does - it kills the thyroid. I have to tell you - it's easier to regulate thyroid med once the thyroid isn't producing anything, because then all you have is the med you take every day and that's what you depend on.
Some people will tell you that if you go gluten free, it'll do wonders for you; you'll lose weight, lower antibody counts - no end to the good things... don't believe that either. There are no scientific studies that back it up. Some people are sensitive to gluten and find that if they go gluten free or limit the amount of gluten they eat, they do feel better.
Because of my peripheral neuropathy, caused from untreated Pernicious Anemia, I was advised to eat an anti-inflammatory diet, so I, personally, feel better if I limit the amount "white" gluten I eat - that's things that contain white flour and I've extended that include white rice and sugar. Eliminating/limiting these things has nothing to do with my Hashimoto's, but it does have to do with making me healthier, overall and I lost 22 lbs in the process, so that was a good thing.
Another thing you should be made aware of is that once we have one autoimmune disease the chances of getting another are greater than if we didn't have the first one. For instance, I have Hashimoto's and Pernicious Anemia. Another thing is that autoimmune diseases tend to run in families, but not every family member gets the same disease - again, I have the Hashimoto's and PA, my son has Type I diabetes and my daughter has Lupus - all are autoimmune.
Thank you. Barb your help is invaluable. I finally found some answers and now have a better understanding about what direction to take. I am all about trying to take care of yourself and going beyond what conventional medicine does. So... the next question is how to stop or slow the Hashimotos. I am just treating a symptom and need to deal with my immune system. Just wondering if anyone has tried different thing successfully.
COMMUNITY LEADER
While 724 for B-12 is "okay", I, personally, find that if my levels are closer to the 900 to 1100 area, I feel much better. Yes, I know your lab only goes to 946, but many labs go much higher and B-12 is water soluble, so it's not toxic and you can't overdose on it. Methyl B-12 sublingual is what I recommend.
Yes, you go through an online lab company, order the labs you want, they tell you which lab to go to in your area, you get the blood draw, then they send you the report. This way, you get what you want and don't have to fight your doctor for it. One that I've used, myself, is healthcheckusa, but I've heard there might be some that are less expensive. I've had excellent results with healthcheckusa, but would not vouch for any others, since I haven't used them.
The drawback with ordering your own labs this way is that it's not covered by insurance or Medicare, so it's strictly out of pocket. I've found it to be worth the money/effort, though when my doctor balked at getting tests I felt were necessary for my well being.
Yes, you go through an online lab company, order the labs you want, they tell you which lab to go to in your area, you get the blood draw, then they send you the report. This way, you get what you want and don't have to fight your doctor for it. One that I've used, myself, is healthcheckusa, but I've heard there might be some that are less expensive. I've had excellent results with healthcheckusa, but would not vouch for any others, since I haven't used them.
The drawback with ordering your own labs this way is that it's not covered by insurance or Medicare, so it's strictly out of pocket. I've found it to be worth the money/effort, though when my doctor balked at getting tests I felt were necessary for my well being.
I personally think your B-12 could be a bit higher. I would generally say it should be above 900. The OTC sublingual B-12 seem to give the best results.
i also would agree that a increase in T3 might make sense. Are the tests frequent enough to really see how an increase in the T4 dose raises the FT3 levels?
It is possible that the increases are not keeping up with the pace of destruction that the Hashimoto's is causing. As your FT4 levels seem to generally keep decreasing despite the increases in dosage. With that fact it is hard to determine the conversion ability of the T4.
i also would agree that a increase in T3 might make sense. Are the tests frequent enough to really see how an increase in the T4 dose raises the FT3 levels?
It is possible that the increases are not keeping up with the pace of destruction that the Hashimoto's is causing. As your FT4 levels seem to generally keep decreasing despite the increases in dosage. With that fact it is hard to determine the conversion ability of the T4.
I always get copies of my labs so that I can keep track of what is going on. I will again talk to the doctor about raising the Cytomel. I need to check my iron levels for sure and vitamin D. I would like to know what they are. I found some Lab Corp facilities in Asheville and Johnson City about an hour away. Pulled my lab test and B12 was 724 (normal 211-946) so that is OK. Thank you for all of the info. I didn't think about getting my own labs done. Excellent idea. I have to go through an online lab company then go to lab corp for draw right? Do you suggest any particular one or does it matter?
COMMUNITY LEADER
There are web sites from which you can purchase the tests you need without a doctor's order... you order and pay for the tests, they send you a lab order and tell you which lab to go to (typically, LabCorp), you get the blood draw and you're e-mailed the results within a couple of days, followed up with a hard copy in the mail.
The problem with naturopaths is that many don't accept insurance or Medicare and they tend to be quite expensive.
Just because vitamin B12 was in the "normal" range, doesn't mean it was really normal... Yeah, that's what I said. The range for B-12 is really wide; typically something like 200-1100 or 200-900 and when your doctor looks at your result and sees 300, he'll tell you it's normal, but that's really way too low. Some countries have the lower limit set at 500. My lab even puts a note on the report stating that anything below 500 may result in symptoms of deficiency. The range my lab uses is 200-1100 and I have to keep my levels right at/near the top in order to keep symptoms at bay.
It would have been good to get vitamin D tested prior to supplementing, but it's always good to keep tabs on your levels. Ferritin in the iron storage hormone and iron is necessary for the conversion of FT4 to the active FT3 thyroid hormone. I'd definitely advise getting that tested, as well, since your FT3 is so low.
You should always get copies of all your labs to keep for your own records; don't trust your doctor to tell you everything you need to know.
The problem with naturopaths is that many don't accept insurance or Medicare and they tend to be quite expensive.
Just because vitamin B12 was in the "normal" range, doesn't mean it was really normal... Yeah, that's what I said. The range for B-12 is really wide; typically something like 200-1100 or 200-900 and when your doctor looks at your result and sees 300, he'll tell you it's normal, but that's really way too low. Some countries have the lower limit set at 500. My lab even puts a note on the report stating that anything below 500 may result in symptoms of deficiency. The range my lab uses is 200-1100 and I have to keep my levels right at/near the top in order to keep symptoms at bay.
It would have been good to get vitamin D tested prior to supplementing, but it's always good to keep tabs on your levels. Ferritin in the iron storage hormone and iron is necessary for the conversion of FT4 to the active FT3 thyroid hormone. I'd definitely advise getting that tested, as well, since your FT3 is so low.
You should always get copies of all your labs to keep for your own records; don't trust your doctor to tell you everything you need to know.
Sorry about the vitamin info. I am taking 2000mg Vitamin C. My PCP checked Vitamin B12 and said it was normal. I have not had my Vitamin D or Ferritin levels checked although I want to. I take 5000iu Vitamin D because most people are low in it and it is good for old bones and anti-cancer. I may make another appt. with PCP and ask to check Vitamin D and Ferritin. Endocrinologist doesn't believe in it. Unfortunately. I am thinking of changing Endos but it is a 6 month wait at least. Thinking of a naturopath that will check some of the other things that I think are important as I have studied natural medicine for years and researched thyroid disorders. But I need the tests. I want to get to the bottom of this and I think I need both. A shame but that is the way it is.. Thanks for your help and i will continue to follow.
COMMUNITY LEADER
Your FT3 is way too low in the range. Just because it's within the normal range, doesn't mean it's good enough for you... As I noted, most of us feel best with FT3 in the upper half to upper third of its range. Symptoms correlate best with FT3 levels and FT3 should be higher in its range than FT4.
Your FT4 is also a bit low in its range at only 44%, but if you brought up your FT3, the FT4 would probably be okay.
You left out some of the vitamin information... What vitamin do you take 2000 mg of? Which vitamin B levels are being checked by your pcp and found to be "normal"? You're supplementing vitamin D, but have you had your levels tested? If so, what are they? What about ferritin/iron?
Both iron and vitamin D are necessary for the metabolism of thyroid hormones. Iron is used for the conversion of FT4 to the active FT3.
If your doctor refuses to increase your cytomel dosage, you need a new doctor.
Your FT4 is also a bit low in its range at only 44%, but if you brought up your FT3, the FT4 would probably be okay.
You left out some of the vitamin information... What vitamin do you take 2000 mg of? Which vitamin B levels are being checked by your pcp and found to be "normal"? You're supplementing vitamin D, but have you had your levels tested? If so, what are they? What about ferritin/iron?
Both iron and vitamin D are necessary for the metabolism of thyroid hormones. Iron is used for the conversion of FT4 to the active FT3.
If your doctor refuses to increase your cytomel dosage, you need a new doctor.
Hi and thank you for your response.
Normal ranges for T4 is 0.82-1.77
T3 normals are 2.0-4.4
My doctor said that T3 levels are normal and doesn't want to raise the Cytomel.
I should add that I do take my meds in the morning 1 hour before I eat. I also take Vitamins but not until 4 hours after meds. They are Vitamin 2000 mg, Vitamin B100, Selenium, Vitamin D 5000, Magnesium 400mg. Vitamin B levels are normal being checked by my primary care doctor. I have also had a thyroid ultrasound. It showed an enlarged thyroid, no nodules. I was having trouble swallowing, but that has pretty much went away.
Thank you for your help.
Normal ranges for T4 is 0.82-1.77
T3 normals are 2.0-4.4
My doctor said that T3 levels are normal and doesn't want to raise the Cytomel.
I should add that I do take my meds in the morning 1 hour before I eat. I also take Vitamins but not until 4 hours after meds. They are Vitamin 2000 mg, Vitamin B100, Selenium, Vitamin D 5000, Magnesium 400mg. Vitamin B levels are normal being checked by my primary care doctor. I have also had a thyroid ultrasound. It showed an enlarged thyroid, no nodules. I was having trouble swallowing, but that has pretty much went away.
Thank you for your help.
COMMUNITY LEADER
What are the reference ranges for your FT4 and FT3? Ranges vary lab to lab and have to come from your own lab reports.
It looks like your FT3 is way too low and you need to increase your cytomel dosage from 5 mcg and possibly split it into more than one dosage/day.
Most of us on a T3 med find that we feel best if FT3 is in the upper half to upper third of its range and we also find that splitting it into more than one dose during the day works best because cytomel and other T3 meds are fast acting and don't stay in the system very long, so they are gone within a few hours. Taking them in 2 doses keeps levels stable throughout the day. I take 10 mcg/day with 5mcg in the morning with my T4 med and 5 mcg around noon.
It looks like your FT3 is way too low and you need to increase your cytomel dosage from 5 mcg and possibly split it into more than one dosage/day.
Most of us on a T3 med find that we feel best if FT3 is in the upper half to upper third of its range and we also find that splitting it into more than one dose during the day works best because cytomel and other T3 meds are fast acting and don't stay in the system very long, so they are gone within a few hours. Taking them in 2 doses keeps levels stable throughout the day. I take 10 mcg/day with 5mcg in the morning with my T4 med and 5 mcg around noon.
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