Whaddya know - it WAS the thyroid!

[Globetrotter]

I get my thyroid tested regularly due to family history on both sides and personal history of being on the higher side of normal. I've had symptoms like fatigue, brain fog/memory problems, anxiety, hair loss, rare joint pain (when I wake up and it's cold - but very very rare). I've been reading here about underdiagnosed thyroid disease but got preoccupied with other things and didn't push to get tested until recently. The fatigue greatly improved after I started taking iron..

It turns out I have a tendency for autoimmune disease and I have thyroid antibodies, but the endo. said my levels were not too bad but some studies show the benefit of treating at the lower levels. He put me on 25 mcg of levothyroid, which I started 2.5 weeks ago, and said let's see if it helps. I figured why not. Well, since Thursday I have been feeling like a new person. I simply did not expect this and I'm having a hard time believing it, but I think the meds are making a big difference!

My energy levels are amazing, my MOOD is great (even my kids noticed) and the anxiety has diminished (I was obsessing over upcoming medical tests for something related but strangely enough I am calmer about that), and.. my memory has greatly improved! For a long time, I have been having ongoing issues like lapse in memory - for instance, I try to recall the name of dd's first grade teacher and it will take me a few seconds - I even forgot last year's teacher over the summer and couldn't remember for some time! I was constantly starting emails and forgetting what I was supposed to say. I chalked this up to getting older, but I'm not THAT old, so then I started obsessing (in typical form) about early dementia. I've been testing myself over the past few days and I am able to recall all the kid's teachers quickly, for example.

I thought it would take a few months to make a small difference, if at all, so I'm having a hard time believing this but it can't be a coincidence, no? Not only that.. I've been going on strenuous hikes that previously knocked me out all weekend, causing a lot of fatigue. This weekend I'm functioning normally. Now I realize that I have been living in an anxious cloud for a long time now!

I hope it's not a temporary thing because it does seem too good to be true (just two weeks??), but I'm so happy right now that I will take what I can get! I'm guessing my levels are not so bad so it may be easy to treat right now vs. later if the disease gets worse.

So now I'm a convert and I want to thank you all for educating me about this issue because my doc (a very thorough doc, at that) did not suggest treating at this point.

[karstmama]

wow, good for you! those subtle problems with subtle symptoms can be sooo tough. i'm glad you're feeling so much better so quickly.

[Twoboos]

WOW - these symptoms all sound very much like what I've been experiencing for a while. My Dr attributed it to the start of Lyme Disease. Well I did my courses for antibx, and I'm still tired, foggy, a bad mood, etc.!

I just had bloodwork maybe a month or so ago, and they said all was fine across the board, including Thyroid. I think I need to follow up on this!

So glad you're feeling better!

[smiles33]

Hooray for the improvements! I hope they are long-lasting....

[Globetrotter]

Two boos, the key was testing thyroid antibodies, which my doc had never done before the autoimmune link.

In your case, it could well be Lyme, and there is also a link between the two in some cases.

[niccig]

Two boos, the key was testing thyroid antibodies, which my doc had never done before the autoimmune link.


Many docs dont' test for the antibodies.

What you are describing was my experience. I had a thyroid nodule and felt awful, in getting a 2nd opinion on the surgery, the surgeon told me my levels did mean I should be on medicine. I started the meds and 3-4 weeks later, I was a totally different person. I still needed to have the surgery because of size of nodule.

I know my meds are off when I get bone weary tired (different to tired because had late night) and I'm cranky at everyone for no reason. Just take as prescribed (wait an hour before eating), dont' skip and hopefully you'll be fine. I have had to have my meds. adjusted as time goes on, so keep watch for symptoms and go get tested again if you do start feeling awful again.

[hellokitty]

GT, that's great! I'm glad that your doctor caught what was wrong and that treatment has made a huge difference in improving your life.

[KDsMommy]

That's great that the meds are making such a difference so quickly! Kudos to you for pushing for the tests.

I'm wondering if that may be an issue for me too. I'm tired all the time, have trouble with depression and anxiety, and have pain in my joints and feet. hmmmm...off to google.

[Globetrotter]

KDsmommy, I am finding we have to advocate for ourselves - not the first time for me, and I'm sure it won't be the last. My very thorough Harvard Med. school and Stanford educated doctor didn't bring up the antibody testing and I had to ask to see an endo.

If SHE missed it, makes me wonder about the rest, but it also highlights the fact that medicine is not an exact science and, in fact, it often requires detective work and an open mind!

Niccig, yes, i keep the tabs upstairs and take them first thing when I wake up so it won't interfere with breakfast. I'm sure this is just the beginning and we will need to adjust meds in the future. Just hoping the effects last because I don't want to go back to my former self.

[mackmama]

Wow - that's awesome news!!! I so agree re advocating for ourselves.

May I ask what type of doctor I should see to get the thyroid antibodies test? Can I ask my general doc to do it - or do I need to see an endocrinologist?

[SnuggleBuggles]

Wow - that's awesome news!!! I so agree re advocating for ourselves.

May I ask what type of doctor I should see to get the thyroid antibodies test? Can I ask my general doc to do it - or do I need to see an endocrinologist?

My primary Dr. did the testing.

[Globetrotter]

You can ask your PCP to test if you feel you have the symptoms, but be prepared to push a little. I have read stories where PCPS refused to test it, which makes no sense to me. I know they don't like to see patients coming in with info. from Dr. Google, but hey, you know what? Sometimes it's the only way.

I have a positive ANA, which can indicate lupus (ruled out for now, with one more test pending) or other autoimmune illness. I have also very slight positive RF (ETA: correction) and two other tests were barely positive (all indicating predisposition to AI but no actual disease.. yet if at all). The rheumatologist tested thyroid antibodies and a whole host of other stuff, but the thyroid AB was the only one that came out positive. He said that means I will likely get thyroid disease in the future but no need to treat it yet. I have since read that a positive ANA can even be caused by AI thyroid disease, but I need to look into that more. It would explain a lot.

My PCP did not recommend an endo. yet but wanted to continue checking yearly. After reading here, I requested to see an endo. and he said some studies show that some people benefit from this, and I am apparently one of them!

[citymama]

That's so great that you were diagnosed correctly and the treatment is helping. I hope you continue to feel better!

[mypa]

That's great you are getting relief. Would you mind sharing what your TSH level was? Did that also indicate you were hypothyroid or was it just the antibody test that indicated something might be off?

[pharmjenn]

GT, so glad you are feeling better and were proactive in getting tested and diagnosed. So many of us have the same story.
My new GP said my levels were "fine." My Gyn said the same thing, but that my Vit D was low so I should add Vit D supplement. Finally my weight loss MD (a retired OB who is now into hormone treatment) agreed to test more and diagnosed hypothyroid and low testosterone. Started Armour Thyroid and Vit D in higher doses and within days felt better.

Now I an appt with an endocrinologist in a few weeks and hope he agrees with the diagnosis. I never have thyroid antibodies done, but did other autoimmune testing last summer by a GI doc and those were negative.
In my area it is near impossible to get in with an Endo. There are not that many, and few are accepting new patients, so I think most patients rely on their GPs, which is sad. Even my DH's endo wouldn't start seeing me, and he has been an existing patient for over 10 years.

[lcarlson90]

I am so glad I read this thread...About 4 years ago I started having fatigue, hair loss, night sweats and memory issues. My ANA was highly positive and they sent me to a Rhuematologist for Lupus testing. All the tests for Lupus came back negative.

I had originally suspected a thyroid issue but my Dr. said my thyroid levels were normal. I doubt they did the thyroid antibody test. I have always felt like there was something going on and the positive ANA indicates that but I gave up because I didn't get anywhere with the doctor's. I wonder if I should go back and pursue this further.

[Globetrotter]

That's great you are getting relief. Would you mind sharing what your TSH level was? Did that also indicate you were hypothyroid or was it just the antibody test that indicated something might be off?


It was 3.5 (.4-4.50 is considered normal). thyroid peroxidase Antibodies were 55, which is high but not by a huge amount (normal <35). They said that indicated I would likely have a problem but watch and see. I'm so glad I saw the endo. anyway. I'd been having symptoms for years - new thinking is you should treat the symptoms, not the numbers. Makes sense to me.. I'm still in disbelief over the marked difference, esp. the anxiety, so I am motivated to do whatever I can to keep it in check. I had no idea the anxiety was related to this! Depression and anxiety runs in the family so I assumed it was related to that.

Other numbers, but I guess everyone is different:
thyroglobulin antibodies <20 (normal)
T4 free 1.4 (.8 - 1.8 normal)


I am so glad I read this thread...About 4 years ago I started having fatigue, hair loss, night sweats and memory issues. My ANA was highly positive and they sent me to a Rhuematologist for Lupus testing. All the tests for Lupus came back negative.

I had originally suspected a thyroid issue but my Dr. said my thyroid levels were normal. I doubt they did the thyroid antibody test. I have always felt like there was something going on and the positive ANA indicates that but I gave up because I didn't get anywhere with the doctor's. I wonder if I should go back and pursue this further

I was a bit skeptical about all these people having undiagnosed thyroid problems, but now I'm a believer! Who knows but it's worth a try since you've gone undiagnosed. Are you still having these problems? You may need to be your own advocate as I am learning the antibody test is expensive, which probably explains why it isn't used regularly. I'm betting the TSH is cheap to administer, but what's the point if it's not a good measure? I have read that hashimotos can cause a positive ANA so I'm thinking/hoping that MAY explain it in my case. This is from the Lupus Foundation:
What does a positive ANA mean? Unlike a pregnancy test, which if positive generally means only one thing, a positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.

[Globetrotter]

GT, so glad you are feeling better and were proactive in getting tested and diagnosed. So many of us have the same story.
My new GP said my levels were "fine." My Gyn said the same thing, but that my Vit D was low so I should add Vit D supplement. Finally my weight loss MD (a retired OB who is now into hormone treatment) agreed to test more and diagnosed hypothyroid and low testosterone. Started Armour Thyroid and Vit D in higher doses and within days felt better.

What other tests did you have?

[LizLemon]

It was 3.5 (.4-4.50 is considered normal).
Consider yourself lucky that you have a doctor who treated your symptoms and not just your numbers. I have no thyroid (removed due to concern for cancer) and my level was about 4.49 in the mid-late third trimester. I was highly symptomatic and my OB declined to adjust my meds because my labs were technically normal. I was extremely frustrated, to the point of tears after multiple visits. Not only did I feel like crap, but in pregnancy your body needs ever-increasing amounts of thyroid hormone - and of course my body has no way of producing it, so it was eminent that I was going to be hypothyroid, just fix the meds! It's nice to have a doctor who listens to more than just the lab results.

[pharmjenn]

What other tests did you have?

I already had standard TSH and T3,T4. He did the free t3 and free t4, plus, since I was also having libido issues, tested free testosterone, which was found to be undetectable. That issue isn't really resolved, but the Armour I am taking has been amazing. I finally get to see an endo in 2 weeks, and I assume he will order new labs, since my others are now 4 months old and I have been on Armour for that long. I will have to ask about antibodies, but don't know if they are accurate if you are on meds.

[niccig]

It was 3.5 (.4-4.50 is considered normal).

This is old range of numbers. Narrower range is 0.3-3.0

I'm seen by endocrinologist at major teaching hospital in Los Angeles. He told me not all agree with narrower range, but the American Academy of Endocrinologists adopted the narrower range.

See here for discussion of studies and range of what is considered normal http://www.healio.com/endocrinology/thyroid/news/print/endocrine-today/%7B3F07849E-63F4-4294-8469-E5EB68DD1647%7D/Studies-data-and-dialogue-needed-to-determine-TSH-range


I'm hypothyroid due to surgery and my endo said most people are best when TSH is about 1.0-2.0. I know from experience if I go up over 2.0, I start to get symptoms. At 3.5, I'm flat on my back exhausted. My old endo wouldn't give meds when I was 3.5, saw the new guy before my surgery for 2nd opinion, he put me on prescription of synthroid and I did feel much better - and I stayed with him. If I have to swap Drs. my first question will be what do you consider normal range and when do you treat? For me, 1.5 is my sweet spot (I've bounced high to low after my surgery and got to see symptoms at both ends of spectrum.). If a Dr. said he wouldn't change my meds if TSH under 3.5, I would leave and not go back. I know what I feel like at TSH of 3.5 and it isn't pretty.

[niccig]

Consider yourself lucky that you have a doctor who treated your symptoms and not just your numbers. I have no thyroid (removed due to concern for cancer) and my level was about 4.49 in the mid-late third trimester. I was highly symptomatic and my OB declined to adjust my meds because my labs were technically normal. I was extremely frustrated, to the point of tears after multiple visits. Not only did I feel like crap, but in pregnancy your body needs ever-increasing amounts of thyroid hormone - and of course my body has no way of producing it, so it was eminent that I was going to be hypothyroid, just fix the meds! It's nice to have a doctor who listens to more than just the lab results.

Seriously?! Where's the WTF icon..

I've been told to call my endo if I'm pregnant before calling my OB. He tells me this at end of every check-up that it's crucial I be monitored carefully during pregnancy. After the roller coaster I've gone through with my thyroid, I'm only letting him deal with my thyroid levels - he listens and he doesn't' just go by blood tests.

[LizLemon]

This is old range of numbers. Narrower range is 0.3-3.0

I'm seen by endocrinologist at major teaching hospital in Los Angeles. He told me not all agree with narrower range, but the American Academy of Endocrinologists adopted the narrower range.

See here for discussion of studies and range of what is considered normal http://www.healio.com/endocrinology/thyroid/news/print/endocrine-today/%7B3F07849E-63F4-4294-8469-E5EB68DD1647%7D/Studies-data-and-dialogue-needed-to-determine-TSH-range


I'm hypothyroid due to surgery and my endo said most people are best when TSH is about 1.0-2.0. I know from experience if I go up over 2.0, I start to get symptoms. At 3.5, I'm flat on my back exhausted. My old endo wouldn't give meds when I was 3.5, saw the new guy before my surgery for 2nd opinion, he put me on prescription of synthroid and I did feel much better - and I stayed with him. If I have to swap Drs. my first question will be what do you consider normal range and when do you treat? For me, 1.5 is my sweet spot (I've bounced high to low after my surgery and got to see symptoms at both ends of spectrum.). If a Dr. said he wouldn't change my meds if TSH under 3.5, I would leave and not go back. I know what I feel like at TSH of 3.5 and it isn't pretty.
That is really good advice. We have just moved so I need to find a new endocrinologist. I will definitely be asking those questions. I think an additional one I will add is the doctor's opinion of supplementing with T3. Since my complete thyroidectomy, I have just not felt like my old self, even when my TSH levels have been good. I'm not wild about the idea of armour but curious to see if adding synthetic T3 to synthroid will help me feel a bit more like my old self.

[Globetrotter]

This is old range of numbers. Narrower range is 0.3-3.0

I'm seen by endocrinologist at major teaching hospital in Los Angeles. He told me not all agree with narrower range, but the American Academy of Endocrinologists adopted the narrower range.

See here for discussion of studies and range of what is considered normal http://www.healio.com/endocrinology/...mine-TSH-range


I'm hypothyroid due to surgery and my endo said most people are best when TSH is about 1.0-2.0. I know from experience if I go up over 2.0, I start to get symptoms. At 3.5, I'm flat on my back exhausted.

The lab paperwork lists the old range! Honestly, had it not been for you all at the BBB, I probably would have accepted their initial advice, not consulted an endo. and lived with the symptoms until my numbers got way too high. ugh. A few years ago I went through a period where I suffered from extreme fatigue, brain fog, memory problems - it was pretty bad, but all tests came back negative (not just thyroid) and I got better. Now I am wondering if my thyroid went whacky during that time - I assume it can fluctuate, right? I need to do some more reading.


I was highly symptomatic and my OB declined to adjust my meds because my labs were technically normal.

refused? wow.. did you go back to the OB and educate him/her? GEEZ

[LizLemon]

refused? wow.. did you go back to the OB and educate him/her? GEEZ
Ugh. It was a very frustrating time. This doctor was dead set on not adjusting my meds until my labs hit that magic value over 4.5. It was incredibly upsetting, because you know that it will take a good while to feel better once your meds are adjusted. "Oh those are just pregnancy symptoms." Insult to injury, I am a physician and prescribe thyroid medication at times, so her treatment of felt like a complete dismissal of my medical opinion as well. (Of course, breaking down in tears over the situation, I was hardly conversing like a colleague, but that I will attribute to pregnancy hormones!) Luckily, I was able to see another OB in the practice for a subsequent visit who increased my dose.

[niccig]

That is really good advice. We have just moved so I need to find a new endocrinologist. I will definitely be asking those questions. I think an additional one I will add is the doctor's opinion of supplementing with T3. Since my complete thyroidectomy, I have just not felt like my old self, even when my TSH levels have been good. I'm not wild about the idea of armour but curious to see if adding synthetic T3 to synthroid will help me feel a bit more like my old self.

Sorry to be the bearer of bad news, but you will probably never feel like you used to feel.

My endo was the first Dr. who was realistic with me. I had 1/2 thyroid removed. He told me that the replacement meds were not 100% as my body had made and while he would work with me to get me feeling as good as I could be, it would be a new normal.

It really helped me have realistic expectations of my life post-thyroid surgery. Other Drs. I saw (I was interviewing surgeons and endos) told me it would be super easy, take a pill and you'll feel just as good again. Total BS. It took several months of adjusting meds and regular checks to get me to a good spot. I don't feel exactly as I did pre-thyroid issues (I'm still always freezing cold) but I have energy and I'm not cranky all the time. So I deal with the cold and take my pill thankful I'm no where near as bad as I used to be.

Now that doesn't mean armour won't help. It might, and you won't know until you try it. We've tweaked my meds and I start to get heart palpitations at next higher dos, so this is my sweet spot for now and I just deal with cold by always having a cardigan with me and it's not enough of an issue for me to try something else. If I still had energy and mood issues, I would want to try more options.

[pharmjenn]

[QUOTE=niccig;3638553]I just deal with cold by always having a cardigan with me and it's not enough of an issue for me to try something else./QUOTE]

Now I don't feel too embarrassed about bringing a cardigan or even a jacket with me everywhere, even in summer. Interestingly, my DS4 sometimes complains about the same thing. I doubt that is anything, since I haven't noticed any other symptoms.
I still have mood issues and fatigue, but since I have only been on one dose of Armour since my summer diagnosis, I may not be on stable yet. My first endo appt is next week, so I will find out soon enough.

[Globetrotter]

I am a physician and prescribe thyroid medication at times, so her treatment of felt like a complete dismissal of my medical opinion as well.
Wow, that is something else - imagine how the average patient would have felt in there! I'm glad you are out of there!!