Aa
swollen hands on levothyroxine
I am a concert pianist who has been on Levo nearly a year. Having terrible problems with swollen hands, tendonitis in arms and thumbs. This is threatening my livlihood! Last week's lab test results:
TSH (uUI/ml) 2.33 (range 0.35-4.94),
fT4 (ng/dl) 1.04 (range 0.70-1.48),
fT3 (pg/ml) 2.68 (range 1.71-3.71),
Anti-peroxidase (UI/ml) 0.6 (range 0.0-5.61),
Anti-thiroglubulin (UI/ml) 1.0 (range 0.0-4.11).
I had to BEG for tests other than the TSH. Taking 75mg. Levo/da. Other nasty symptoms include restless sleep, brain fog, EXTREME fatigue, weight gain, general aches and pains everywhere. Internal medicine Dr. I go to says tests are "normal", that I must just be depressed. Wants to give me anti-depressants. I'm not "sad", but understandably worried and very, very frustrated. My choice of Drs. is limited under my HMO-type insurance plan and the only non-alleopathic choice is a homeopath. Very little income now because I can hardly play anymore....
TSH (uUI/ml) 2.33 (range 0.35-4.94),
fT4 (ng/dl) 1.04 (range 0.70-1.48),
fT3 (pg/ml) 2.68 (range 1.71-3.71),
Anti-peroxidase (UI/ml) 0.6 (range 0.0-5.61),
Anti-thiroglubulin (UI/ml) 1.0 (range 0.0-4.11).
I had to BEG for tests other than the TSH. Taking 75mg. Levo/da. Other nasty symptoms include restless sleep, brain fog, EXTREME fatigue, weight gain, general aches and pains everywhere. Internal medicine Dr. I go to says tests are "normal", that I must just be depressed. Wants to give me anti-depressants. I'm not "sad", but understandably worried and very, very frustrated. My choice of Drs. is limited under my HMO-type insurance plan and the only non-alleopathic choice is a homeopath. Very little income now because I can hardly play anymore....
COMMUNITY LEADER
"Supposedly", if the antibody tests are below the reference range, they are considered negative, even if there are a small amount present. IMO, the number should actually be zero... in other words, if there are "some" present, now, there could be more at a later date, but that's just MY opinion!! If it were me, I'd insist on having them tested at a later date.
Your doctor is really right about the antibodies.. treatment won't change, whether you have them or not, because you're hypo, no matter what the cause. The book referenced above is very controversial (there's actually an entire thread devoted to it, here on this forum from back in 2010, that got very heated and is no longer open for comments). To date, there's no scientific evidence to support certain diet changes that many claim necessary for "everyone" with Hashimoto's and there's certainly no cure for it, as others might claim. Of course, anyone with sensitivities to any food should avoid that food.
An ANA test is an Anti Nuclear Antibody test which is usually done when another autoimmune disease, such as Rheumatoid Arthritis, Lupus, or MS is suspected. I don't see a need for you to get that test, since you've already had the thyroid antibody tests and we know the swelling is a symptom of hypothyroidism.
Hydrochlorthiazide is a very common diuretic; as long as he prescribed it in a small enough dosage, you're probably fine with it. One other thing you might try is dandelion tea or dandelion capsules (or both) from your grocery or health food store... I had horrible swelling/edema when I was hypo (still do, at times) and I started drinking dandelion tea. It took a few days because my swelling was so bad, but it did finally go down. I now take a couple of dandelion capsules every day (along with my prescribed diuretic) to make sure I keep it down.
You might also try soaking your hands in a warm epsom salt bath. Epsom salt tends to draw out excess fluid, but it can also make your hands very dry.
Make sure you drink enough water, as well. I tend to have more swelling if I don't drink enough liquid; it's like my body holds onto fluid if there isn't enough coming in.
Since you're still hypo, inflammation can cause your joints to swell, as well. The extra 12.5 mcg levo should help take care of that, assuming that you will convert the FT4 to FT3 adequately, since FT3 correlates best with symptoms.
Tendonitis can be a symptom of hypothyroidism, but it can also be caused by repetitive motion, which playing the piano is. You might want to try doing other hand/arm exercises in order to use your muscles in different ways, as well.
As noted in one of the posts above, there is a ton of information on the internet about hypothyroidism and Hashimoto's, but you do have to sift through it all carefully, because some of it goes beyond reasonable. Just know that there is no cure for Hashimoto's and once the antibodies have damaged your thyroid and it has stopped producing hormones, there's no way to make it start again. Any site or book that promises either of these is misleading.
Your doctor is really right about the antibodies.. treatment won't change, whether you have them or not, because you're hypo, no matter what the cause. The book referenced above is very controversial (there's actually an entire thread devoted to it, here on this forum from back in 2010, that got very heated and is no longer open for comments). To date, there's no scientific evidence to support certain diet changes that many claim necessary for "everyone" with Hashimoto's and there's certainly no cure for it, as others might claim. Of course, anyone with sensitivities to any food should avoid that food.
An ANA test is an Anti Nuclear Antibody test which is usually done when another autoimmune disease, such as Rheumatoid Arthritis, Lupus, or MS is suspected. I don't see a need for you to get that test, since you've already had the thyroid antibody tests and we know the swelling is a symptom of hypothyroidism.
Hydrochlorthiazide is a very common diuretic; as long as he prescribed it in a small enough dosage, you're probably fine with it. One other thing you might try is dandelion tea or dandelion capsules (or both) from your grocery or health food store... I had horrible swelling/edema when I was hypo (still do, at times) and I started drinking dandelion tea. It took a few days because my swelling was so bad, but it did finally go down. I now take a couple of dandelion capsules every day (along with my prescribed diuretic) to make sure I keep it down.
You might also try soaking your hands in a warm epsom salt bath. Epsom salt tends to draw out excess fluid, but it can also make your hands very dry.
Make sure you drink enough water, as well. I tend to have more swelling if I don't drink enough liquid; it's like my body holds onto fluid if there isn't enough coming in.
Since you're still hypo, inflammation can cause your joints to swell, as well. The extra 12.5 mcg levo should help take care of that, assuming that you will convert the FT4 to FT3 adequately, since FT3 correlates best with symptoms.
Tendonitis can be a symptom of hypothyroidism, but it can also be caused by repetitive motion, which playing the piano is. You might want to try doing other hand/arm exercises in order to use your muscles in different ways, as well.
As noted in one of the posts above, there is a ton of information on the internet about hypothyroidism and Hashimoto's, but you do have to sift through it all carefully, because some of it goes beyond reasonable. Just know that there is no cure for Hashimoto's and once the antibodies have damaged your thyroid and it has stopped producing hormones, there's no way to make it start again. Any site or book that promises either of these is misleading.
Oh, forgot to ask you something. In your follow-up post, you mention that antibody tests show negative. So showing present, though low is considered negative? Shouldn't show zero? Or is that your clue that those buggers just haven't revved up yet?
Thanks for your input, Teri. Getting tests is like pulling impacted teeth here! The Dr. did say the anti-thyroid peroxidase and thyroglobulin tests would indicate Hashi's or not, after saying there was no point in getting those tests because the treatment - levothyroxine - would be the same anyway. :-{ Yeah, I' thinking he's not such a hot doctor, and appears more and more to be a jerk, to boot! I don't know what an ANA is ....adrenal something something? But no, won't authorize other tests. Seems he thinks it's all in my head, not my hands! So, not to put too fine a point on it, looks like I will have to invigorate myself somehow and pro-actively TAKE IT INTO MY OWN HANDS.
Thank you for all the info, flower-feline! I know there's a lot of stuff to sift through out there on-line. I just have to put my fingers to this keyboard rather than to the one on my piano! I like the idea of diet and natural therapies in at least a support role and am starting my own notebook of recommendations. Again, it will just take time to sift and sort to come up with the strategies that will work. Did you have issues with edema? If so, what worked for you? It all seems so very individual! I think I'll advertise that anyone with a thyroid lab test gets into my next concert for free! : ))
oh boy! I have "getting my Hashi antibodies revved up" to look forward to? Yikes! and Sigh. Thanks for your follow-up comments. Went to doc today. He grudgingly agreed to increase my levo 12.5 mcgs. Hope that will help. Also gave me hidroclorotiazide diuetic to take (25 mg 1x/day) after I asked for SOMETHING to help the hands ASAP because I have a concert date in two weeks! I've been searching all over the place to see what effect (pos or neg) the diuretic may have before I try it. Also prescribed a (very expensive!) anti-inflammatory - meloxicam for the tendonitis problem. I just HATE to "drug-up". Maybe I should just go with the increased levo and hold off on the diuretic and anti-inflam...? BTW, he asked how I "got along" with my boss and was my married life ok! And no, he definitely wasn't hitting on me! LOL Said all my tests are normal, so implies my symptoms are due to stress or depression. I bit my tongue before asking him if swollen hands were symptomatic a bad marriage. P.S. I'm not married and I'm my own boss. duh I definitely will be doctor-shopping this week!
There are thousands of people like you...it sounds awful and I sympathize! I know you had to beg for other tests, but could you go back and ask to be tested for Hashimoto's (as Teri5393 mentioned above...it's the same as autoimmune thyroiditis)? From what I read, 80-90% of hypothyroid patients have Hashi's, but doctors often don't bother testing because in their opinion, the treatment is the same either way. I don't agree, because from what I read, it's more important to get the autoimmune attack under control than to treat the symptoms with medication (or at least equally important).
I have Hashimoto's but I'm not medicated. Thankfully, I found out somewhat early (although it still took me 3-4 years to get a diagnosis). If I did take medication, I'd use NDT if possible (natural dessicated thyroid), but otherwise, I've read again and again that adding T3 (Cytomel) to your T4-only medication can make a huge difference. Some people don't convert T4 to T3 and that's where the symptoms arise.
I've been able to reverse most of my symptoms (fatigue, depression, brain fog) with diet and supplements. Vitamin D (10,000 IU per day plus K, my doctor's orders) keeps me from getting depressed. Correcting my iron deficiency and adding a B-complex were also hugely helpful. Going gluten-free fixed my brain, and all the above steps help with my energy and sleep. When D is taken in the morning or during the day, it helps you sleep better at night. Magnesium is also extremely important. If you can possibly find a functional medicine doctor in your area, they will know how to help you.
Here's a good article on D. Anyone chronically ill tends to become depleted so we need more than an average person. If I don't take my D for a couple of weeks, I get horribly depressed. http://www.bulletproofexec.com/bulletproof-your-sleep-with-vitamin-d/
There's a book you may find helpful, "Why Do I Still Have Thyroid Symptoms...When My Lab Tests Are Normal?" See, obviously you're not the only one with this problem!! I posted a helpful website in another reply, which is probably the main one for thyroid issues, but it was stripped out and I got a message that I'm not allowed to link to it. So I'll just encourage you to do your own searching, and the top patient-supported websites will certainly come up. The Hashimoto's 411 Facebook group has been incredibly helpful, and they have a website, too.
This note is a bit scattered, sorry, but try googling any of the keywords above and you'll soon be overwhelmed with good info!
Losing weight is my next challenge, but it's starting to look like my problem there may have more to do with adrenal fatigue. I'm just starting to study up. Apparently adrenal fatigue, which is caused by stress, is one of the most common precursors to thyroid disease...and other things...and is well able to pile on the weight and prevent weight loss, with or without thyroid problems.
I hope you will soon be feeling better. I wish I could come to one of your concerts!!
I have Hashimoto's but I'm not medicated. Thankfully, I found out somewhat early (although it still took me 3-4 years to get a diagnosis). If I did take medication, I'd use NDT if possible (natural dessicated thyroid), but otherwise, I've read again and again that adding T3 (Cytomel) to your T4-only medication can make a huge difference. Some people don't convert T4 to T3 and that's where the symptoms arise.
I've been able to reverse most of my symptoms (fatigue, depression, brain fog) with diet and supplements. Vitamin D (10,000 IU per day plus K, my doctor's orders) keeps me from getting depressed. Correcting my iron deficiency and adding a B-complex were also hugely helpful. Going gluten-free fixed my brain, and all the above steps help with my energy and sleep. When D is taken in the morning or during the day, it helps you sleep better at night. Magnesium is also extremely important. If you can possibly find a functional medicine doctor in your area, they will know how to help you.
Here's a good article on D. Anyone chronically ill tends to become depleted so we need more than an average person. If I don't take my D for a couple of weeks, I get horribly depressed. http://www.bulletproofexec.com/bulletproof-your-sleep-with-vitamin-d/
There's a book you may find helpful, "Why Do I Still Have Thyroid Symptoms...When My Lab Tests Are Normal?" See, obviously you're not the only one with this problem!! I posted a helpful website in another reply, which is probably the main one for thyroid issues, but it was stripped out and I got a message that I'm not allowed to link to it. So I'll just encourage you to do your own searching, and the top patient-supported websites will certainly come up. The Hashimoto's 411 Facebook group has been incredibly helpful, and they have a website, too.
This note is a bit scattered, sorry, but try googling any of the keywords above and you'll soon be overwhelmed with good info!
Losing weight is my next challenge, but it's starting to look like my problem there may have more to do with adrenal fatigue. I'm just starting to study up. Apparently adrenal fatigue, which is caused by stress, is one of the most common precursors to thyroid disease...and other things...and is well able to pile on the weight and prevent weight loss, with or without thyroid problems.
I hope you will soon be feeling better. I wish I could come to one of your concerts!!
COMMUNITY LEADER
You seem to have me mixed up with the original poster, but all the symptoms are consistent with under treated hypothyroid. Thyroid antibodies have already been done and shown to be negative, but that doesn't mean colibri53 doesn't have Hashimto's; just means the antibodies haven't revved up yet. I'm not seeing a need for ANA, since that's usually negative with thyroid (even autoimmune). Looking at the thyroid levels, IMO, an increase in thyroid replacement is what's needed. Swelling/edema is very common with hypothyroidism.
sounds like your issues go beyond thyroid. did they test you for autoimmune issues? run an ana or other panel? i had similar symptoms in the early 90s (and also have autoimmune thryroditis which is being treated)
teri5393
teri5393
COMMUNITY LEADER
I'm sure you already know this, but just because your FT levels are in range, doesn't mean they are good for you... Rule of thumb is for FT4 to be about mid range (50%); yours is only 43%. Rule of thumb is for FT4 to be in the upper half to upper third of its range and yours is only at 49% of its range... That's all not to mention that your TSH is "borderline" high because most of us use a range of 0.3-3.0. You have a lot of room to increase your med and symptom relief is the important thing.
What type of doctor are you seeing? Are there other types that you might see, that would take your insurance that might prescribe a higher dose of medication? For instance, here, we have endocrinologist, primary care physicians, internists and other types of doctors who can all treat thyroid conditions and prescribe medications.
If no other doctor is available, will this doctor listen if we give you information to take to him? Why is he reluctant to let you get your levels higher in the ranges? It won't hurt anything as long as you don't go too high.
What type of doctor are you seeing? Are there other types that you might see, that would take your insurance that might prescribe a higher dose of medication? For instance, here, we have endocrinologist, primary care physicians, internists and other types of doctors who can all treat thyroid conditions and prescribe medications.
If no other doctor is available, will this doctor listen if we give you information to take to him? Why is he reluctant to let you get your levels higher in the ranges? It won't hurt anything as long as you don't go too high.
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