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What are your thoughts on my situation?
Hello Everyone,
I apologize for posting in the inappropriate posting. Here is my comment in a new thread, and thank you so very much. Like the song says, I get by with a little help from my friends.
Much love!
I am so glad to have found this wonderful blog where we can find support and answers to our concerns. I have just recently been diagnosed with hypothyroidism. My doctor only first took routine blood work (CBC etc )and a TSH test to rule out any thyroid issues,
During January I had been under severe emotional stress due to my mother's health issues ( she was hospitalized for generalized weakness, and then began having non-convulsive seizures etc) I was feeling extra anxious and experiencing palpitations. ...and of course I was exhausted, but I believe that to be due to circumstances....I really had no other symptoms. Although in retrospect, my eyebrows are very thin and there has been hair loss , but I thought that to be due to menopause. When the results came back, they were as shown below ( TSH) .
Yet I had researched the topic on my own to discover that several more tests are needed to be done to properly address my thyroid issue. And so when I went back to see her this month, (March) I asked that she do a T 3 Free and T 4 and also a thyroid anti-body study. The results are as shown below which confirmed that I have Hashimoto's. It is also my understanding that Dr's too often do not take proper the tests to and this goes undiagnosed, while also being the major cause for hypothyroidism. I refused to fall into that category, especially if this is an immune disorder, then I want to know how best to handle my situation, diet etc.
TSH 10.24 ( blood work from January results)
T3Free 3.1 ( this and all below from March blood work)
T4AML 7.6
Anti-Microsomal (TPO) Ab 2048
Anti-Thyroglobulin Ab 20
I have been feeling overwhelmed with the scope of this course, and am trying not to obsess about my health, albeit , it is been a struggle..until now when I discovered this blog. My anxiety levels have been difficult to handle , yet I am wondering how much of that has to do with just being anxious about my current health situation.
My symptoms: feeling cold, tired, some depression, hair loss, and palpitations which I have read in other forums to also be a culprit in low thyroid function. My 2 daughters are also being treated for hypothyroidism, for several years now. One takes Levothyroxine. the other Synthroid with great success.
I just began my meds on March 18th, Levothyroxine 0.05 mg. In June I see my doctor again and she will do blood work to adjust, but has only ordered TSH and not Free T3 & Free T4 which I understand from you Barb is the proper way to adjust thyroid levels with medication.
Diet is the key to health and must be addressed in any issue. I have also read intriguing articles on anti-inflammatory diets from Dr Weil's perspective, and also the link below, what is your perspective?
http://www.genesmart.com/pages/natural_anti_inflammatory_foods/6.php
I would greatly appreciate any advice you or any others here have to offer. I feel a sense of relief just knowing this place exists and look forward to hearing from you.
Bree
I also take a probiotic that is time released from renew life available at walmart that I take the opposite part of the day that I take my thyroid pills since you aren't to take vitamins or probiotics within 4 hrs of thyroid pills or eat for a hour after thyroid pills and I also try not to do caffeine for 30 min of thyroid pills.
you may want to get your d3 checked for vit d deficiency which is very common with women if you don't get lots of sunlight and I had it even though I did when I reached menopause. I was also dhea low, low b12 and so my dr started me on 5000mg of d3 daily trying to get d3 just above 50, a good quality bcomplex from vitacost with the good form of b12 not the one that starts with cyna, and I was also very low in my hormones. I went to a bio identical dr check that ran all these test along with my thyroid since so many things are interconnected and I too had been through a tragic loss so that can do a number on the body.....I was told to go to a bio identical dr since they would really look at the big picture and not just one thing...and it was very helpful.....but any good dr experienced in thyroid would be good. many women at church have their heart specialist, or kidney drs, or gyn drs or reg medical drs do their thyroids.....so many women have this problem..i was shocked....
Wow, that was quite a reply...and quite informative. Thank you so much Barb.
My doctor is very willing to work with me and said that I can have any tests that I want. And so I will test for all 3 each time.
The reason for the gluten intolerance testing was to be certain food sensitivities were not causing any inflammatory response in my body. And also since the risk is greater for other auto-immune disease, an anti-inflammatory diet might be helpful to reduce extra troubles.
My doctor is very willing to work with me and said that I can have any tests that I want. And so I will test for all 3 each time.
The reason for the gluten intolerance testing was to be certain food sensitivities were not causing any inflammatory response in my body. And also since the risk is greater for other auto-immune disease, an anti-inflammatory diet might be helpful to reduce extra troubles.
COMMUNITY LEADER
Per your request, I've read over your thread.
First off, your doctor was correct in starting you at a low dose of levo. It's always best to start low and work up as needed. I know you're going to the doctor this morning, and I wish I'd have read this sooner.
It takes 4-6 weeks for levo to reach full potential in your blood, so having just started it, a week ago, on the 18th, you haven't been on it nearly long enough for it to make much difference. Nothing happens quickly when it comes to treating hypothyroidism because of the time it takes for the med to build in your system.
Rule of thumb is for FT4 to be about mid range... your T4 (is that Free? I'm not familiar with AML) is at 40% of its range; low, but not horrible and expected to come up once the med reaches potential. Rule of thumb is for FT3 to be in the upper half to upper third of its range. Yours is at 42%, but again, you haven't been on the med long enough for it to bring your levels up. This would also be expected to rise as the med gets into your system, though FT3 often lags behind FT4.
Some of us don't convert FT4 to FT3 well, so we have to add a source of T3, such as cytomel, generic liothyronine or a desiccated hormone. Again, though, you haven't been on the levo nearly long enough to be able to determine conversion.
I do agree with Deb that waiting 3 months is too long. Typically, testing is done at 6 week intervals, when first starting and/or actively adjusting dosages.
Thyroid 101... Your thyroid makes 2 main hormones, T4 and T3, but mostly T4. Of the total T4 in your blood, approximately 90-95% is bound by a protein that makes it unusable. The unbound (Free) T4 in your blood is what's available for use. Free T4 can't be used directly, by the cells; it must be converted to T3. Most of the conversion is done in the liver, but some small amount is done in the brain and other organs.
Like T4, most of the T3 in your blood is bound by protein and can't be used. The unbound (Free) T3 is what's actually used by individual cells. Free T3 is the hormone that correlates best with symptoms, while TSH and Free T4 do not.
When having blood work done, always insist on having both Free T3 and Free T4 done with the TSH. TSH is a pituitary hormone and as Deb noted, varies greatly throughout the course of a day and is affected by any number of variables. While it can be a useful diagnostic tool, it should never be used alone to diagnose or treat a thyroid condition.
Your TPOab would confirm a diagnosis of Hashimoto's. There is no scientific evidence to prove that gluten has anything to do with antibody attacks or that going gluten free will stop them. You can actually cause yourself to be intolerant to gluten by going gluten free, when you don't need to. The only connection between celiac and Hashimoto's is that they are both autoimmune and once you have one autoimmune disease, the chances of having/getting another are greater.
With Hashimoto's, the body sees the thyroid as foreign, so it produces antibodies to destroy it. Hashimoto's is progressive, in that the thyroid produces less and less hormones, as the antibodies destroy more healthy thyroid tissue. There is no cure. Once there is no more healthy thyroid tissue, the antibodies will go into remission because there is nothing more to destroy. At that point, your thyroid will produce no hormones and you will be completely dependent on your replacement hormones.
Many people do find that Naturopathic Doctors are better for treating thyroid conditions, but you should be aware that they tend to be very expensive and most do no accept insurance.
Any type of doctor is fine for treating thyroid, so long as they are willing to test both Free T3 and Free T4 and treat symptoms, as well as lab numbers. Endocrinologists are the doctors that would, typically, treat endocrine disease, such as Hashimoto's/hypothyroidism, but not all endos are good thyroid doctors. Many of them specialize in diabetes and are still use TSH as the gold standard in thyroid.
If you can get your pcp to test FT3 and FT4 every time you test, you might be better of staying with her.
Antibodies do not need to be tested every time you have labs. Once you have Hashimoto's, you have it for life and it doesn't matter what the numbers are. While antibodies may cause swelling and inflammation in the thyroid, they aren't what's causing your symptoms - the hypothyroidism (low FT levels) are causing your symptoms.
First off, your doctor was correct in starting you at a low dose of levo. It's always best to start low and work up as needed. I know you're going to the doctor this morning, and I wish I'd have read this sooner.
It takes 4-6 weeks for levo to reach full potential in your blood, so having just started it, a week ago, on the 18th, you haven't been on it nearly long enough for it to make much difference. Nothing happens quickly when it comes to treating hypothyroidism because of the time it takes for the med to build in your system.
Rule of thumb is for FT4 to be about mid range... your T4 (is that Free? I'm not familiar with AML) is at 40% of its range; low, but not horrible and expected to come up once the med reaches potential. Rule of thumb is for FT3 to be in the upper half to upper third of its range. Yours is at 42%, but again, you haven't been on the med long enough for it to bring your levels up. This would also be expected to rise as the med gets into your system, though FT3 often lags behind FT4.
Some of us don't convert FT4 to FT3 well, so we have to add a source of T3, such as cytomel, generic liothyronine or a desiccated hormone. Again, though, you haven't been on the levo nearly long enough to be able to determine conversion.
I do agree with Deb that waiting 3 months is too long. Typically, testing is done at 6 week intervals, when first starting and/or actively adjusting dosages.
Thyroid 101... Your thyroid makes 2 main hormones, T4 and T3, but mostly T4. Of the total T4 in your blood, approximately 90-95% is bound by a protein that makes it unusable. The unbound (Free) T4 in your blood is what's available for use. Free T4 can't be used directly, by the cells; it must be converted to T3. Most of the conversion is done in the liver, but some small amount is done in the brain and other organs.
Like T4, most of the T3 in your blood is bound by protein and can't be used. The unbound (Free) T3 is what's actually used by individual cells. Free T3 is the hormone that correlates best with symptoms, while TSH and Free T4 do not.
When having blood work done, always insist on having both Free T3 and Free T4 done with the TSH. TSH is a pituitary hormone and as Deb noted, varies greatly throughout the course of a day and is affected by any number of variables. While it can be a useful diagnostic tool, it should never be used alone to diagnose or treat a thyroid condition.
Your TPOab would confirm a diagnosis of Hashimoto's. There is no scientific evidence to prove that gluten has anything to do with antibody attacks or that going gluten free will stop them. You can actually cause yourself to be intolerant to gluten by going gluten free, when you don't need to. The only connection between celiac and Hashimoto's is that they are both autoimmune and once you have one autoimmune disease, the chances of having/getting another are greater.
With Hashimoto's, the body sees the thyroid as foreign, so it produces antibodies to destroy it. Hashimoto's is progressive, in that the thyroid produces less and less hormones, as the antibodies destroy more healthy thyroid tissue. There is no cure. Once there is no more healthy thyroid tissue, the antibodies will go into remission because there is nothing more to destroy. At that point, your thyroid will produce no hormones and you will be completely dependent on your replacement hormones.
Many people do find that Naturopathic Doctors are better for treating thyroid conditions, but you should be aware that they tend to be very expensive and most do no accept insurance.
Any type of doctor is fine for treating thyroid, so long as they are willing to test both Free T3 and Free T4 and treat symptoms, as well as lab numbers. Endocrinologists are the doctors that would, typically, treat endocrine disease, such as Hashimoto's/hypothyroidism, but not all endos are good thyroid doctors. Many of them specialize in diabetes and are still use TSH as the gold standard in thyroid.
If you can get your pcp to test FT3 and FT4 every time you test, you might be better of staying with her.
Antibodies do not need to be tested every time you have labs. Once you have Hashimoto's, you have it for life and it doesn't matter what the numbers are. While antibodies may cause swelling and inflammation in the thyroid, they aren't what's causing your symptoms - the hypothyroidism (low FT levels) are causing your symptoms.
Ah, thanks. As soon as I posted, it kinda came to me and I thought...duh!
I called my doctor's office to ask if I could move my appointment up to the end of April to address concerns and they offered me an appointment to come in tomorrow to talk things over. I thought that maybe sooner, rather than later, I might embrace that opportunity to ease my concerns. I really think that if I am reassured that we are on both the same page it will ease my anxieties,
I am making notes of questions to bring up during my visit. It really was very good advice for you to suggest to not wait until June, I had already been feeling a little uneasy about waiting so long and wondered to myself if that was standard protocol.
Thanks again for your support, wish me luck.
I called my doctor's office to ask if I could move my appointment up to the end of April to address concerns and they offered me an appointment to come in tomorrow to talk things over. I thought that maybe sooner, rather than later, I might embrace that opportunity to ease my concerns. I really think that if I am reassured that we are on both the same page it will ease my anxieties,
I am making notes of questions to bring up during my visit. It really was very good advice for you to suggest to not wait until June, I had already been feeling a little uneasy about waiting so long and wondered to myself if that was standard protocol.
Thanks again for your support, wish me luck.
Glad you feel your doctor will work with you. That's half the battle. An ND is a Naturopathic doctor.
Thanks Deb, that would explain why my moods are fluctuating during the day. I thought it was just me being critical of myself and I also have a history of anxiety problems.
I will call my doctor to see if I can make an appointment sooner. I am fairly certain that she will work with me on this, as when I requested the extra tests she was amendable. I am trying my best to keep an open mind and be positive.
I will call my doctor to see if I can make an appointment sooner. I am fairly certain that she will work with me on this, as when I requested the extra tests she was amendable. I am trying my best to keep an open mind and be positive.
Hi Bree.
The one thing I have found is that if we allow for it, trying to get "well" again will be all consuming of our life and can become extremely stressful. Stress raises cortisol. Cortisol affects thyroid hormones and vice versa, so it can be very difficult, to say the least, when we feel we do not have a doctor we can trust. TSH testing only will not help with dosing properly. A doctor has to be willing to listen to symptoms and at least do fT4 and T3 (preferably fT3) along with the TSH. Endocrinologists seem to be the worst for looking at TSH only.
That said, your TSH looks pretty darn high to me, but TSH can fluctuate in a matter of minutes (another reason why it isn't the best test to judge hormone dose by), and there are times of the day when it is naturally higher than others. But, anything over 3.0 is high as far as most "good" doctors are concerned, and even better doctors are now saying anything over 2.0 could be considered too high. TSH is the exact opposite of fT3 and fT4 in that when it is high, those hormones will be low. That's how it is supposed to work, anyway. So if your TSH is low, your thyroid hormones "should" read high.
Your TSH is high and your T4 and T3 numbers are on the low end. Most thyroid patients who feel good say their numbers are in the high mid range, with T3 being even closer to top of the range. It is difficult to judge, sometimes, whether or not your symptoms are from being hyper or hypo, since a lot of the symptoms are the same, but being cold is usually a hypo symptom. The others you share can also be from being hyper. The problem is that with Hashi's, your levels can swing back and forth so you can experience both symptoms of being hyper and hypo. From what I have found out about Hashi's the key is to get your hormone levels up high enough to stop the attacks. With low doses of thyroid, the antibody attacks can actually get worse. There are a lot of forums out there on this, and a lot of different opinions, but you have to find a doctor who will listen to your symptoms as well as taking into consideration all the tests.
Waiting until June to raise your dose is making you wait too long, especially if you continue to have unacceptable symptoms. Your body will respond to the hormone within days and usually levels out responding by 3 to 4 weeks. So, you should be seeing that doctor again at the end of April, very latest in May, sooner if you still feel awful in 3 weeks. At the least, all blood tests should be done to assess all levels within 3 weeks of your starting thyroid hormones.
I am sure your doctor started you low so you wouldn't have any bad reactions, but waiting 3 months on that dose if you feel no better after a couple weeks is not a good thing. A lot of people have found better treatment for thyroid issues with NDs, but some people have not.
I wish you luck in this. It is challenging, but try to remember that it is just one more thing we have been given in this life to deal with, and we can do it as long as we have some kind of support system going. Keep looking for the "right" doctor. That is imperative to getting the "right" treatment for you.
The one thing I have found is that if we allow for it, trying to get "well" again will be all consuming of our life and can become extremely stressful. Stress raises cortisol. Cortisol affects thyroid hormones and vice versa, so it can be very difficult, to say the least, when we feel we do not have a doctor we can trust. TSH testing only will not help with dosing properly. A doctor has to be willing to listen to symptoms and at least do fT4 and T3 (preferably fT3) along with the TSH. Endocrinologists seem to be the worst for looking at TSH only.
That said, your TSH looks pretty darn high to me, but TSH can fluctuate in a matter of minutes (another reason why it isn't the best test to judge hormone dose by), and there are times of the day when it is naturally higher than others. But, anything over 3.0 is high as far as most "good" doctors are concerned, and even better doctors are now saying anything over 2.0 could be considered too high. TSH is the exact opposite of fT3 and fT4 in that when it is high, those hormones will be low. That's how it is supposed to work, anyway. So if your TSH is low, your thyroid hormones "should" read high.
Your TSH is high and your T4 and T3 numbers are on the low end. Most thyroid patients who feel good say their numbers are in the high mid range, with T3 being even closer to top of the range. It is difficult to judge, sometimes, whether or not your symptoms are from being hyper or hypo, since a lot of the symptoms are the same, but being cold is usually a hypo symptom. The others you share can also be from being hyper. The problem is that with Hashi's, your levels can swing back and forth so you can experience both symptoms of being hyper and hypo. From what I have found out about Hashi's the key is to get your hormone levels up high enough to stop the attacks. With low doses of thyroid, the antibody attacks can actually get worse. There are a lot of forums out there on this, and a lot of different opinions, but you have to find a doctor who will listen to your symptoms as well as taking into consideration all the tests.
Waiting until June to raise your dose is making you wait too long, especially if you continue to have unacceptable symptoms. Your body will respond to the hormone within days and usually levels out responding by 3 to 4 weeks. So, you should be seeing that doctor again at the end of April, very latest in May, sooner if you still feel awful in 3 weeks. At the least, all blood tests should be done to assess all levels within 3 weeks of your starting thyroid hormones.
I am sure your doctor started you low so you wouldn't have any bad reactions, but waiting 3 months on that dose if you feel no better after a couple weeks is not a good thing. A lot of people have found better treatment for thyroid issues with NDs, but some people have not.
I wish you luck in this. It is challenging, but try to remember that it is just one more thing we have been given in this life to deal with, and we can do it as long as we have some kind of support system going. Keep looking for the "right" doctor. That is imperative to getting the "right" treatment for you.
Deb, I'm not exactly sure why my doctor stared me out on such a low dosage, I'm guessing that she wants to be sure how I will tolerate it. And i am trusting that she knows what she is doing. Sometimes it's hard not to give in to doubt.
What are the best ranges for my Free T3 & Free T4? And were you suffering from anxiety too?
I try to keep myself focused, but I just want to be well and not dwell so much on my condition. This is all so frighting and new to me. I have read over several questions and the answers are reassuring, yet I understand that it is really up to me to relax and let my body heal.
What are the best ranges for my Free T3 & Free T4? And were you suffering from anxiety too?
I try to keep myself focused, but I just want to be well and not dwell so much on my condition. This is all so frighting and new to me. I have read over several questions and the answers are reassuring, yet I understand that it is really up to me to relax and let my body heal.
Hi Deb, Thank you for your response, and great advice. You are so right...knowledge is power. The medical establishment is in for a firestorm in this new age of awareness where people are waking up in their lives as well as taking charge of their health. their health. How liberating!
Just today I had read in a Natural Awakenings publication about non-Celiac gluten intolerance, which had piqued my interest, and prompted my question. I will ask that Celiac testing be done and use caution as to not change too many variables as it would definitely defeat the purpose of my quest.
I hope you are doing well in yours.
Just today I had read in a Natural Awakenings publication about non-Celiac gluten intolerance, which had piqued my interest, and prompted my question. I will ask that Celiac testing be done and use caution as to not change too many variables as it would definitely defeat the purpose of my quest.
I hope you are doing well in yours.
Forgive me, I failed to give the reference ranges from my lab . Hope this clarifies things.
Anti-Thyroglobulin Ab <=40 IU/mL <20
Anti-Microsomal (TPO) Ab <=34 IU/mL 2048
T4 AML 4.5 - 12.0 mcg/dL 7.6
T3 Free 2.3 - 4.2 pg/mL 3.1
TSH 0.34 - 5.60 uIU/mL 10.24
Also, are there any additional tests that you think best to be taken to further understand my situation? I was going to also ask for a vitamin/mineral deficiency study, possibly a gluten intolerance or other food sensitivities check.
It's my understanding that immune health actually begins in your gut, and since Hashimoto's is an auto-immune disease, inflammatory conditions that exist in your body can be exacerbated by gluten intolerance and/or food sensitivities.
Thank you again so very much.
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Your dose of Synthroid is pretty low and your doctor should never test by TSH alone. It is very, very difficult to find doctors who really know how to treat thyroid patients, that is for sure. The best thing to do is get yourself as knowledgeable as you can and then find a doctor that will work with you in your treatment, not one who has a set way to treat everyone. No one will have the exact same treatment plan as anyone else. We are all different. I have had hormone levels very similar to what you posted but my TSH was totally suppressed. For a long time, my doctors refused to give me more hormone because of that. I was very hypo. So those numbers aren't everything. Have to go by if you feel good or not.
Dr. Weil has some great advice, but again, I wouldn't try everything all at once. I would get the Celiac testing done, though and if negative, go gluten free because there is a connection between thyroid and gluten.