Thyroid Issues, maybe? Where to go when your tests are normal
August 8, 2014 9:23 AM Subscribe
I've got what looks and feels like textbook hypothyroid. I am having trouble getting an endocrinologist to see me since my test results are in the normal range. Have you dealt with this?
My doctor has diagnosed me with fibromyalgia, since I hit almost every hypo symptom but my thyroid test results are in the normal range. I had the TSH and the free T3 tests done, but I understand there are more tests that could be done. My GP has referred me to endocrinologists but they don't want to "waste my time" since my test results are normal.
I seem to have inflammation issues that come and go. My family and I got food poisoning earlier this year that my family shook off but turned into a full blown auto-immune attack that was so painful I was bedridden and could not work for a while.
My grandmother was hypo, and had her thyroid removed when she was in her 50s. My mother was diagnosed with fibro and then Graves' disease. I would really like to feel better before my test results go out of normal range if possible and not 20 years from now.
I eat a very healthy diet (modified Paleo, since I am intolerant to wheat and corn), am mindful of sugar, and don't drink much anymore (once a week maybe, and lightly). I have less pain if I watch my diet. I self medicate with vitamins, turmeric, and a small chunk of a pot brownie before bed for inflammation. All of these things make me feel about 70% of my normal, painfree, clear thinking, non-tired self, but I am still really weighed down by whatever this is.
I did very well from an inflammation and clearing-brain-fog standpoint on prednisone when I was bedridden with acute pain, but the side effects were a nightmare. I took ephedra for a week and that was a great help. I had read a very old study that was showing higher conversion of T4 to T3 on ephedrine, which made me wonder if that is part of the issue. I felt like my old self again. However, I'd rather not self-medicate if I can help it.
I have a big hunch that killing the inflammation and maybe natural thyroid or T3 would help, but I don't know how to convince someone to try me on something. I am so desperate to feel better and think clearly again.
I know YANMD, for which I am glad right now, since I am out of ideas. What would you do or did you do, if this was you? Would you get a complete thyroid/adrenal kit and test yourself? Are there doctors out there who will treat symptoms? I am in Western Washington State (US) if you actually have a name. Thank you for reading.
My doctor has diagnosed me with fibromyalgia, since I hit almost every hypo symptom but my thyroid test results are in the normal range. I had the TSH and the free T3 tests done, but I understand there are more tests that could be done. My GP has referred me to endocrinologists but they don't want to "waste my time" since my test results are normal.
I seem to have inflammation issues that come and go. My family and I got food poisoning earlier this year that my family shook off but turned into a full blown auto-immune attack that was so painful I was bedridden and could not work for a while.
My grandmother was hypo, and had her thyroid removed when she was in her 50s. My mother was diagnosed with fibro and then Graves' disease. I would really like to feel better before my test results go out of normal range if possible and not 20 years from now.
I eat a very healthy diet (modified Paleo, since I am intolerant to wheat and corn), am mindful of sugar, and don't drink much anymore (once a week maybe, and lightly). I have less pain if I watch my diet. I self medicate with vitamins, turmeric, and a small chunk of a pot brownie before bed for inflammation. All of these things make me feel about 70% of my normal, painfree, clear thinking, non-tired self, but I am still really weighed down by whatever this is.
I did very well from an inflammation and clearing-brain-fog standpoint on prednisone when I was bedridden with acute pain, but the side effects were a nightmare. I took ephedra for a week and that was a great help. I had read a very old study that was showing higher conversion of T4 to T3 on ephedrine, which made me wonder if that is part of the issue. I felt like my old self again. However, I'd rather not self-medicate if I can help it.
I have a big hunch that killing the inflammation and maybe natural thyroid or T3 would help, but I don't know how to convince someone to try me on something. I am so desperate to feel better and think clearly again.
I know YANMD, for which I am glad right now, since I am out of ideas. What would you do or did you do, if this was you? Would you get a complete thyroid/adrenal kit and test yourself? Are there doctors out there who will treat symptoms? I am in Western Washington State (US) if you actually have a name. Thank you for reading.
did they check you for autoimmune thyroid disorder antibodies? Both kinds, since sometimes one is within range and the other isn't. With a good endo, a Hashimotos diagnosis will qualify you for management of symptoms.
posted by blue suede stockings at 9:42 AM on August 8, 2014
posted by blue suede stockings at 9:42 AM on August 8, 2014
What is the "normal" range that they are using? Many labs/doctors have changed their ranges recently to a more narrow range; many have not. On top of this there is "normal" and "normal for you" (see this article) - I would keep pushing for the further tests. It's just blood tests (and maybe an ultrasound), it's not like it's really invasive or anything.
You mention you're intolerant to wheat, have you been tested for celiac disease? Graves disease is correlated with celiac disease (and rheumatoid arthritis and other autoimmune inflammatory diseases), and often shows up before a celiac diagnosis. Both have hereditary components. For example, my mother and her sister were both diagnosed with graves about 5 years before they were diagnosed with celiac (i.e., before their obviously-celiac-related symptoms were significant enough to warrant a referral to a gastroenterologist).
Have you discussed PCOS with your doctor?
Maybe look for a doctor of osteopathy; they are excellent in terms of listening to your concerns, really absorbing them, and trying to find a path to treating you as a person, not just a list of symptoms.
posted by melissasaurus at 9:57 AM on August 8, 2014 [2 favorites]
You mention you're intolerant to wheat, have you been tested for celiac disease? Graves disease is correlated with celiac disease (and rheumatoid arthritis and other autoimmune inflammatory diseases), and often shows up before a celiac diagnosis. Both have hereditary components. For example, my mother and her sister were both diagnosed with graves about 5 years before they were diagnosed with celiac (i.e., before their obviously-celiac-related symptoms were significant enough to warrant a referral to a gastroenterologist).
Have you discussed PCOS with your doctor?
Maybe look for a doctor of osteopathy; they are excellent in terms of listening to your concerns, really absorbing them, and trying to find a path to treating you as a person, not just a list of symptoms.
posted by melissasaurus at 9:57 AM on August 8, 2014 [2 favorites]
Much as it sucks, if you have the resources to keep looking for second opinions, that's what I recommend. My partner lives at the low end of what your average GP considers the normal range, and was blown off by multiple doctors/endocrinologists before finding one who A) does the additional tests and B) believes the low end of the normal range can still leave you feeling pretty crappily. Seeing that endo got him on a good medication regimen and knowing what numbers actually make him feel right, and vastly improved his quality of life, even though the process of finding the right doctor sucked.
posted by Stacey at 9:58 AM on August 8, 2014 [1 favorite]
posted by Stacey at 9:58 AM on August 8, 2014 [1 favorite]
I know there are doctors who will treat normal thyroid tests, because I've heard of it happening before. Are you even close to outside the normal range? Many labs have different 'normal' ranges, but if you are well within normal you will probably have a tougher go of it getting someone to give you meds. People have been known to abuse thyroid meds for weight loss, and thyroid meds are not benign meds to take, which is why folks don't like to prescribe them without good reason. Keep in mind that "textbook hypothyroid" symptoms are mostly nonspecific symptoms that can correspond to many different problems, not just thyroid disorders. It might be that fixating on the thyroid is keeping you from discovering other issues that might be making you feel unwell.
I don't think you should buy your own kit. I would doubt any doctor would trust a home kit more than an actual laboratory's test results. Keep on talking to specialists and don't worry about "wasting their time". Your GP is out of ideas, you need a 2nd opinion.
posted by treehorn+bunny at 9:59 AM on August 8, 2014
I don't think you should buy your own kit. I would doubt any doctor would trust a home kit more than an actual laboratory's test results. Keep on talking to specialists and don't worry about "wasting their time". Your GP is out of ideas, you need a 2nd opinion.
posted by treehorn+bunny at 9:59 AM on August 8, 2014
I had this problem - I had hypo symptoms but was within what the endocrinologist & lab said were normal ranges, though I was skating at the edge of normal. Fast forward 2 years and more symptoms and my TSH had finally jumped out of the normal range, so my doctor put me on Levoxyl, which worked ok. I eventually saw an integrative medicine doctor who switched me to natural thyroid (Natur-throid) with a Cytomel assist because my body wasn't converting T4 to T3 well on its own.
Once I got onto that regimen, I felt so much better and all my symptoms went away. But it took me years and years to find the right doctor to treat me based on symptoms vs. just lab tests. Even on Levoxyl I was experiencing hypo symptoms, and I finally found a doctor who would treat subclinical hypothyroidism. My recommendation would be to look for an integrative medicine doctor or an endocrinologist who treats subclinical hypothyroidism.
posted by bedhead at 10:11 AM on August 8, 2014 [3 favorites]
Once I got onto that regimen, I felt so much better and all my symptoms went away. But it took me years and years to find the right doctor to treat me based on symptoms vs. just lab tests. Even on Levoxyl I was experiencing hypo symptoms, and I finally found a doctor who would treat subclinical hypothyroidism. My recommendation would be to look for an integrative medicine doctor or an endocrinologist who treats subclinical hypothyroidism.
posted by bedhead at 10:11 AM on August 8, 2014 [3 favorites]
Do you know what your TSH score was? Depending on the lab and the medical practice, "normal" or "in range" might be all over the map. Your TSH score can also change pretty dramatically over the course of a day or week to week, if your thyroid is struggling. I've had mine taken three times in the past month, and each time it's been between 3 and 5, and the endocrinologist is putting me on synthetic thyroid hormone to bring it down to 1 and hopefully to alleviate the symptoms I've been having (similar to yours, though no pain -- losing tons of hair, brittle/dry nails and skin, cold all the time, tired, low mood, brain fog, slightly increase in weight and cholesterol though still in the "normal range" for both, etc).
Also, have you had an ANA test? If you get a positive ANA, that's also a pretty big deal and likely to get your doctors to take your discomfort seriously. My GP didn't really care about my TSH, but the positive ANA (I had 1:80, which is relatively low but still elevated/positive) led him to send me to a rheumatologist, who sent me to the endocrinologist when it looked like the most likely autoimmune problem I have is Hashimoto's (the endo is currently running labwork specifically for that). It sounds to me like you already know you have some sort of autoimmune problem going on (hence the fibro diagnosis?) but you don't know exactly *what* autoimmune problem it is? There are more tests you can do to narrow it down, and an endo will know the ones to run for a thyroid issue specifically.
You definitely should pursue this, and be pushy about seeing an endocrinologist specifically if you think this is a thyroid issue. In my experience, whatever specialist you see will only be willing to give you a diagnosis related to his/her specialty. That can be a real problem in terms of getting the right diagnosis. The psychiatrist is only going to care about mood disorders and concentrate on the symptoms you have related to mood, and screen you/offer provisional diagnoses for psychiatric disorders like depression. The rheumatologist is only going to care about disorders that effect the joints, and screen you/offer you provisional diagnoses for disorders like lupus, maybe CFS and fibro. If the issue is with your thyroid, then you need to see a specialist who cares specifically about hormonal disorders, meaning you have to see an endo.
Some other things to consider:
-- there's a big overlap between people who have celiac issues and people who have thyroid issues. I don't know why, but it's really common.
-- the treatment for hypothyroid is really not invasive or dangerous compared to treatments for many of the other disorders that it can mimic.
-- if you take care of the thyroid problem, then that'll give a clearer view of which symptoms *aren't* related to thyroid malfunction. Hypothyroid symptoms are really diffuse and general a lot of the time, and there's a ton of overlap between hypothyroid symptoms and the symptoms of other maybe-not-even-related disorders.
-- this isn't for everyone, but personally, I am 100% done with letting people treat me for symptoms without a diagnosis that explains why I have those symptoms. In my experience, that kind of blind treatment of symptoms snowballs into getting tons of aggressive treatment that doesn't have a whole lot of efficacy and that can do real damage to your body. Screw that, I don't want someone to play "let's throw spaghetti at the wall and see what sticks" when it comes to my health, especially when the "spaghetti" getting thrown are dangerous and harsh drugs.
posted by rue72 at 10:14 AM on August 8, 2014 [4 favorites]
Also, have you had an ANA test? If you get a positive ANA, that's also a pretty big deal and likely to get your doctors to take your discomfort seriously. My GP didn't really care about my TSH, but the positive ANA (I had 1:80, which is relatively low but still elevated/positive) led him to send me to a rheumatologist, who sent me to the endocrinologist when it looked like the most likely autoimmune problem I have is Hashimoto's (the endo is currently running labwork specifically for that). It sounds to me like you already know you have some sort of autoimmune problem going on (hence the fibro diagnosis?) but you don't know exactly *what* autoimmune problem it is? There are more tests you can do to narrow it down, and an endo will know the ones to run for a thyroid issue specifically.
You definitely should pursue this, and be pushy about seeing an endocrinologist specifically if you think this is a thyroid issue. In my experience, whatever specialist you see will only be willing to give you a diagnosis related to his/her specialty. That can be a real problem in terms of getting the right diagnosis. The psychiatrist is only going to care about mood disorders and concentrate on the symptoms you have related to mood, and screen you/offer provisional diagnoses for psychiatric disorders like depression. The rheumatologist is only going to care about disorders that effect the joints, and screen you/offer you provisional diagnoses for disorders like lupus, maybe CFS and fibro. If the issue is with your thyroid, then you need to see a specialist who cares specifically about hormonal disorders, meaning you have to see an endo.
Some other things to consider:
-- there's a big overlap between people who have celiac issues and people who have thyroid issues. I don't know why, but it's really common.
-- the treatment for hypothyroid is really not invasive or dangerous compared to treatments for many of the other disorders that it can mimic.
-- if you take care of the thyroid problem, then that'll give a clearer view of which symptoms *aren't* related to thyroid malfunction. Hypothyroid symptoms are really diffuse and general a lot of the time, and there's a ton of overlap between hypothyroid symptoms and the symptoms of other maybe-not-even-related disorders.
-- this isn't for everyone, but personally, I am 100% done with letting people treat me for symptoms without a diagnosis that explains why I have those symptoms. In my experience, that kind of blind treatment of symptoms snowballs into getting tons of aggressive treatment that doesn't have a whole lot of efficacy and that can do real damage to your body. Screw that, I don't want someone to play "let's throw spaghetti at the wall and see what sticks" when it comes to my health, especially when the "spaghetti" getting thrown are dangerous and harsh drugs.
posted by rue72 at 10:14 AM on August 8, 2014 [4 favorites]
One more data point regarding a symptom of hypothyroid. I monitored treatment of patients who were taking Interferon for hep C. Interfeon is an immunomodulator, and some percentage of patients developed an autoimmune thyroiditis as a side-effect. I've seen a fair amount of it. The one symptom that seemed to be spot-on for patients with early hypothyroid, even before the thyroid numbers were abnormal, is constipation. People often seem to have symptoms when the thyroid level is "different" than what they are used to, even if the level is technically in the normal range.
Many patients felt tired, cold, dry skin, etc, but when they included constipation in their group of symptoms, we felt suspicious that the thyroid was the culprit. We counseled lots of fluids and moderate exercise, but if the constipation did not improve our practice was to send patients to endocrine at that point for more in-depth investigation, no matter what the blood tests said.
posted by citygirl at 4:49 PM on August 8, 2014 [1 favorite]
Many patients felt tired, cold, dry skin, etc, but when they included constipation in their group of symptoms, we felt suspicious that the thyroid was the culprit. We counseled lots of fluids and moderate exercise, but if the constipation did not improve our practice was to send patients to endocrine at that point for more in-depth investigation, no matter what the blood tests said.
posted by citygirl at 4:49 PM on August 8, 2014 [1 favorite]
My GP had me start taking thyroid supplements based on my symptoms; it's low on side effects, and has been a big help. At the time, my thyroid test was low normal. It's been progressive, I've had to up the dose when my tests showed it was low.
I had a number of autoimmune issues that are vastly improved since I realized I'm lactose-intolerant and stopped eating dairy. Possibly coincidence, but worth recommending. I still have arthritis in my hands & feet, but much less severe.
posted by theora55 at 6:13 PM on August 8, 2014
I had a number of autoimmune issues that are vastly improved since I realized I'm lactose-intolerant and stopped eating dairy. Possibly coincidence, but worth recommending. I still have arthritis in my hands & feet, but much less severe.
posted by theora55 at 6:13 PM on August 8, 2014
Besides the thyroid, have you had other things tested? Vitamin D and ferratin both have some overlap in symptoms with thyroid issues (especially if you have exhaustion and all-over aches, on the Vitamin D end.)
Feel free to MeMail me if you'd like to talk more.
posted by modernhypatia at 7:07 PM on August 8, 2014 [1 favorite]
Feel free to MeMail me if you'd like to talk more.
posted by modernhypatia at 7:07 PM on August 8, 2014 [1 favorite]
This thread is closed to new comments.
So my advice is to keep trying to find a doctor who will take what you say seriously.
posted by shothotbot at 9:30 AM on August 8, 2014