Aa
Tired of Dr's and SO lost!!!!
I've been dealing with SOOOO many issues, and can't seem to get the help I feel I need.
I'm a 30 year old woman, I've always had a tenancy to be fatigued, and have always had trouble in the weight department (not HUGE, but always been a bit chunky) , but around May of last year things really started going "crazy" on me. I started getting even more tired than normal, and could feel something in my throat, and started putting on weight, no matter what I did. Went to my Dr, and was told it was acid reflux. I didn't agree, and asked to have my thyroid tested, along with being screened for Celiac. The Dr was told about my father (who had thyroid cancer about 15 years ago, and my sister was diagnosed with Celiac about 24 years ago when she was 4)but went along with the acid reflux treatment. They did take blood, but only ran the TSH test (was at 1.8 then), when I had asked for the full panel to be done. I went back in November, because the fatigue had gotten worse, the feeling of something in my throat was worse, and more symptoms had started. By this point I was EXTREMELY tired, almost to the point of being "foggy" during the day, my periods had gotten closer together and VERY intense. I brought up the thyroid to my Dr again, and asked for the full panel to be done, AGAIN. She brushed me off telling me I was "too young" to have issues with that, but would do more tests anyway, and gave me a stronger acid reducing med. She also did more blood tests ( I wish I hadn't been so ignorant, and knew how to read the lab sheet, and had looked more into my symptoms on my own). In a follow up in Dec, she told me everything was fine, and maybe I should see a gastroenterologist. She told me my thyroid was fine, but due to me pushing harder about the feeling in my throat, she sent me for a C/T scan to "prove to me all is fine". I found out later she didn't do ANY thyroid tests that time around, and the C/T Scan showed an enlarged thyroid with 1 nodule. I was referred for an ultrasound after that, and that found 2 nodules. So off to the endocrinologist I went. Without a doubt, I am also looking for a new Primary Dr.....I can't trust her, and she doesn't listen.
Now for the endo.... I went to see him on 3/5. He tested my TSH, Free T3/T4, TPO and TG antibodies, and I am scheduled for a biopsy on 4/3. Since seeing him on 3/5 I started getting even worse. Since last fall, I've packed on 25lbs despite diet and exercise, I am tired beyond belief, but even with the fatigue, I have a hard time getting to sleep, periods are getting worse, I am depressed like crazy (don't know if this is 100% from the thyroid, some of it has to be from feeling like a crazy hypochondriac because I'm basically having to freak out on Dr's to get them to listen to me), my hair and skin are changing (dry coarse hair, dry skin), I'm moody (like REAL moody), I get "foggy" like I just smoke marijuana (but didn't), I get palpitations, sometimes feel like I'm going to faint, and most recently, unbearable pain in my shoulder, hips, thighs, and knees. I finally broke down this last monday and called him to tell him about the new pain symptoms, and asked if there was anything I could be doing from home to help. I got a call back from his nurse, she told me the Dr felt the pain had nothing to do with my thyroid, and I should see my PCP about it. At this point I asked if they had gotten the results from my blood tests. She informed me they had, and gave me the results:
TSH 2.28
Free T-3 2.9
Free T-4 1.0
TG <20
TPO 72
When I looked up the TPO test, I found it was abnormal. Not crazy high, but out of the range (<35). I called back again and said I believed the pain WAS connected and insisted there must be something I could do, either at home naturally, or with the help of meds. I couldn't wait another 2 weeks getting worse like I am. They had me come in the next day (Tues). He put me on Armour 15mg in the morning. I asked if there was anything I should be doing, or eating/ not eating to make things better. He told me to get a multivitamin, but that was it, there wasn't anything else I needed to worry about. Yesterday, I seemed to hit a really weird "foggy" stage, and I felt like I was about to faint, and had to go lay down for about 2 hours before it went away. Then later in the afternoon I had a crazy painful feeling in my chest that lasted about 3 minutes. Then today I have a weird "plugged" feeling in my left ear.
I know all of this has to sound like the ramblings of a crazed hypochondriac, but I just don't know what to do, or whom to trust anymore. I'm scared, I'm alone, and I feel like I just need some help. Please, any advice would be GREATLY appreciated.
I'm a 30 year old woman, I've always had a tenancy to be fatigued, and have always had trouble in the weight department (not HUGE, but always been a bit chunky) , but around May of last year things really started going "crazy" on me. I started getting even more tired than normal, and could feel something in my throat, and started putting on weight, no matter what I did. Went to my Dr, and was told it was acid reflux. I didn't agree, and asked to have my thyroid tested, along with being screened for Celiac. The Dr was told about my father (who had thyroid cancer about 15 years ago, and my sister was diagnosed with Celiac about 24 years ago when she was 4)but went along with the acid reflux treatment. They did take blood, but only ran the TSH test (was at 1.8 then), when I had asked for the full panel to be done. I went back in November, because the fatigue had gotten worse, the feeling of something in my throat was worse, and more symptoms had started. By this point I was EXTREMELY tired, almost to the point of being "foggy" during the day, my periods had gotten closer together and VERY intense. I brought up the thyroid to my Dr again, and asked for the full panel to be done, AGAIN. She brushed me off telling me I was "too young" to have issues with that, but would do more tests anyway, and gave me a stronger acid reducing med. She also did more blood tests ( I wish I hadn't been so ignorant, and knew how to read the lab sheet, and had looked more into my symptoms on my own). In a follow up in Dec, she told me everything was fine, and maybe I should see a gastroenterologist. She told me my thyroid was fine, but due to me pushing harder about the feeling in my throat, she sent me for a C/T scan to "prove to me all is fine". I found out later she didn't do ANY thyroid tests that time around, and the C/T Scan showed an enlarged thyroid with 1 nodule. I was referred for an ultrasound after that, and that found 2 nodules. So off to the endocrinologist I went. Without a doubt, I am also looking for a new Primary Dr.....I can't trust her, and she doesn't listen.
Now for the endo.... I went to see him on 3/5. He tested my TSH, Free T3/T4, TPO and TG antibodies, and I am scheduled for a biopsy on 4/3. Since seeing him on 3/5 I started getting even worse. Since last fall, I've packed on 25lbs despite diet and exercise, I am tired beyond belief, but even with the fatigue, I have a hard time getting to sleep, periods are getting worse, I am depressed like crazy (don't know if this is 100% from the thyroid, some of it has to be from feeling like a crazy hypochondriac because I'm basically having to freak out on Dr's to get them to listen to me), my hair and skin are changing (dry coarse hair, dry skin), I'm moody (like REAL moody), I get "foggy" like I just smoke marijuana (but didn't), I get palpitations, sometimes feel like I'm going to faint, and most recently, unbearable pain in my shoulder, hips, thighs, and knees. I finally broke down this last monday and called him to tell him about the new pain symptoms, and asked if there was anything I could be doing from home to help. I got a call back from his nurse, she told me the Dr felt the pain had nothing to do with my thyroid, and I should see my PCP about it. At this point I asked if they had gotten the results from my blood tests. She informed me they had, and gave me the results:
TSH 2.28
Free T-3 2.9
Free T-4 1.0
TG <20
TPO 72
When I looked up the TPO test, I found it was abnormal. Not crazy high, but out of the range (<35). I called back again and said I believed the pain WAS connected and insisted there must be something I could do, either at home naturally, or with the help of meds. I couldn't wait another 2 weeks getting worse like I am. They had me come in the next day (Tues). He put me on Armour 15mg in the morning. I asked if there was anything I should be doing, or eating/ not eating to make things better. He told me to get a multivitamin, but that was it, there wasn't anything else I needed to worry about. Yesterday, I seemed to hit a really weird "foggy" stage, and I felt like I was about to faint, and had to go lay down for about 2 hours before it went away. Then later in the afternoon I had a crazy painful feeling in my chest that lasted about 3 minutes. Then today I have a weird "plugged" feeling in my left ear.
I know all of this has to sound like the ramblings of a crazed hypochondriac, but I just don't know what to do, or whom to trust anymore. I'm scared, I'm alone, and I feel like I just need some help. Please, any advice would be GREATLY appreciated.
I know you mentioned in your initial post that you'd requested celiac testing. Was that ever done (recently)? If so, which tests were done?
A couple of things jump out at me from your posts:
1 - Your TPOab is elevated, but only marginally so. We often see TPOab in the hundreds or even thousands with Hashi's. Just to give you some perspective, mine was 900+ on diagnosis, and my TGab was 3,000+. Slight elevations in TPOab can accompany other autoimmune conditions, including celiac, lupus, PA, RA, etc.
2 - You feel so much better so soon after starting a g/f diet. While a g/f diet is often beneficial to how Hashi's patients feel, that benefit usually takes considerably longer to be realized. So, I'm wondering if the very fast benefit you felt might indicate celiac, or at the very least non-celiac gluten intolerance (not an autoimmune condition).
A couple of things jump out at me from your posts:
1 - Your TPOab is elevated, but only marginally so. We often see TPOab in the hundreds or even thousands with Hashi's. Just to give you some perspective, mine was 900+ on diagnosis, and my TGab was 3,000+. Slight elevations in TPOab can accompany other autoimmune conditions, including celiac, lupus, PA, RA, etc.
2 - You feel so much better so soon after starting a g/f diet. While a g/f diet is often beneficial to how Hashi's patients feel, that benefit usually takes considerably longer to be realized. So, I'm wondering if the very fast benefit you felt might indicate celiac, or at the very least non-celiac gluten intolerance (not an autoimmune condition).
Meant to also give you this link. It is very worthwhile reading material.
http://www.hormonerestoration.com/Thyroid.html
http://www.hormonerestoration.com/Thyroid.html
Your Free T3 and Free T4 are too low in the range, which is frequently associated with being hypothyroid. Many of our members, myself included, report that symptom relief for them required that Free T3 was adjusted into the upper part of its range and Free T4 adjusted to around the middle of its range. It is good that you have test results for the Frees, because that provides a good benchmark from which to adjust your levels upward as necessary to relieve symptoms. Symptom relief, of course, is all important, not just test results.
I also recommend that you should be tested for Vitamin A, D, B12, RBC magnesium, ferritin, and a full iron test panel. Hypothyroid patients are frequently low in these areas as well. Please note that just being anywhere in these ranges may not be optimal either.
I'm really thinking that you need to find a good thyroid doctor. Would you consider a doctor in Seattle? I have the name of a doctor there that was recommended by a fellow member.
I also recommend that you should be tested for Vitamin A, D, B12, RBC magnesium, ferritin, and a full iron test panel. Hypothyroid patients are frequently low in these areas as well. Please note that just being anywhere in these ranges may not be optimal either.
I'm really thinking that you need to find a good thyroid doctor. Would you consider a doctor in Seattle? I have the name of a doctor there that was recommended by a fellow member.
Excerpts from a great article by Sensible Alternative - Thyroid disease:
"Thyroid antibodies cause symptoms even when thyroid reading is normal
"...it raises the possibility that optimal doses of thyroid hormone will not completely ameliorate all symptoms" - Dr Emerson (editor of journal Thyroid)
New research has shown that Hashimoto's patients with high thyroid antibodies report more symptoms than patients with low thyroid antibodies, even if their thyroid function test is normal. In other words, thyroid replacement is not enough to ameliorate symptoms of autoimmune thyroid disease. (5)
Effective strategies for addressing the autoimmune aspect of Thyroid disease include:
Avoid wheat.
Correct vitamin D deficiency
Improve gut flora
Reduce stress
Correct underlying adrenal issue, such as DHEA or cortisol imbalance.
Correct oestrogen dominance. Consider using Natural progesterone.
Detoxify mercury and other toxins. (Testing for mercury toxicity is available at Sensible-Alternative Clinic).
Supplement selenium to lower thyroid antibodies. Also helps with conversion of T4 to T3.
Correct an iron deficiency.
Herbal medicine Bupleurum, Turmeric, Rehmannia and others.
Other Naturopathic treatments for thyroid.
Herbal medicines Withania or Coleus to increase production of thyroid hromone. (See Best Herbs for Women article.).
Iodine (not kelp). Use with caution in Hashimoto's disease.
Amino acid tyrosine which is the building block for thyroid hormone.
Vitamin B6 and Vitamin A to improve function of the thyroid gland.
Selenium and zinc to ensure conversion of T4 to T3.
Coconut milk/ coconut oil provides medium chain fatty acids to normalise gut flora and stimulate metabolic rate.
Exercise
Sleep
(5) Ott, Johannes et al. Hashimoto's Thyroiditis Affects Symptom Load and Quality of Life Unrelated to Hypothyroidism: A Prospective Case-Control Study in Women Undergoing Thyroidectomy for Benign Goiter.Thyroid, 2011; 21 (2): 161 DOI: 10.1089/thy.2010.0191"
"Thyroid antibodies cause symptoms even when thyroid reading is normal
"...it raises the possibility that optimal doses of thyroid hormone will not completely ameliorate all symptoms" - Dr Emerson (editor of journal Thyroid)
New research has shown that Hashimoto's patients with high thyroid antibodies report more symptoms than patients with low thyroid antibodies, even if their thyroid function test is normal. In other words, thyroid replacement is not enough to ameliorate symptoms of autoimmune thyroid disease. (5)
Effective strategies for addressing the autoimmune aspect of Thyroid disease include:
Avoid wheat.
Correct vitamin D deficiency
Improve gut flora
Reduce stress
Correct underlying adrenal issue, such as DHEA or cortisol imbalance.
Correct oestrogen dominance. Consider using Natural progesterone.
Detoxify mercury and other toxins. (Testing for mercury toxicity is available at Sensible-Alternative Clinic).
Supplement selenium to lower thyroid antibodies. Also helps with conversion of T4 to T3.
Correct an iron deficiency.
Herbal medicine Bupleurum, Turmeric, Rehmannia and others.
Other Naturopathic treatments for thyroid.
Herbal medicines Withania or Coleus to increase production of thyroid hromone. (See Best Herbs for Women article.).
Iodine (not kelp). Use with caution in Hashimoto's disease.
Amino acid tyrosine which is the building block for thyroid hormone.
Vitamin B6 and Vitamin A to improve function of the thyroid gland.
Selenium and zinc to ensure conversion of T4 to T3.
Coconut milk/ coconut oil provides medium chain fatty acids to normalise gut flora and stimulate metabolic rate.
Exercise
Sleep
(5) Ott, Johannes et al. Hashimoto's Thyroiditis Affects Symptom Load and Quality of Life Unrelated to Hypothyroidism: A Prospective Case-Control Study in Women Undergoing Thyroidectomy for Benign Goiter.Thyroid, 2011; 21 (2): 161 DOI: 10.1089/thy.2010.0191"
See? I am still learning , lol. Here's my results with the lab ranges:
TSH 2.28 .40- 4.50
T4, Free 1.0 .8-1.8
T3, Free 2.9 2.3-4.2
TG <20 <20
TPO 72 <35
Like I said above, I understand I'm not that far out of range, so I have great sympathy for those of you worse off than I am. I've never been this miserable, and Needsomehelp: I feel you. OMG do I feel you.
After my post this morning I actually went to the er. The numb face really scared me. They did a cat scan and blood work (only the TSH test for thyroid of course, ugh). My noggin is fine, and my TSH is down to 1.0. 9 hours later, the numbness is about half what it was, but they attributed it to the meds. I'm on day two of a gluten-free diet, and my joint pain has dramatically decreased. It's not gone yet, but I'm not writhing in pain and crying anymore. Total bonus. I do have an advantage when it comes to switching to gluten free, as I grew up with my sister dealing with it, and I am a chef, so it's easy enough. I just wish I'd found out about the correlation sooner. I feel if I had known, I would have never gotten to the point I'm at now. I've also started sitting and kind of rolling around on my exercise ball. Not the workouts I used to do, by any means, but just moving around on it a little bit seems to be relieving some of the pain, especially in my hips.
Gimel, your post has SO much great info. I need to read it a couple times to absorb it all, as I'm still a little foggy today. The help and support I'm already getting means so much to me I can't even put it into words. I hope posting the lab ranges helps you all helping me. Most of all I'm just happy to find a community where I'm not alone. The last few months have just been insane.
TSH 2.28 .40- 4.50
T4, Free 1.0 .8-1.8
T3, Free 2.9 2.3-4.2
TG <20 <20
TPO 72 <35
Like I said above, I understand I'm not that far out of range, so I have great sympathy for those of you worse off than I am. I've never been this miserable, and Needsomehelp: I feel you. OMG do I feel you.
After my post this morning I actually went to the er. The numb face really scared me. They did a cat scan and blood work (only the TSH test for thyroid of course, ugh). My noggin is fine, and my TSH is down to 1.0. 9 hours later, the numbness is about half what it was, but they attributed it to the meds. I'm on day two of a gluten-free diet, and my joint pain has dramatically decreased. It's not gone yet, but I'm not writhing in pain and crying anymore. Total bonus. I do have an advantage when it comes to switching to gluten free, as I grew up with my sister dealing with it, and I am a chef, so it's easy enough. I just wish I'd found out about the correlation sooner. I feel if I had known, I would have never gotten to the point I'm at now. I've also started sitting and kind of rolling around on my exercise ball. Not the workouts I used to do, by any means, but just moving around on it a little bit seems to be relieving some of the pain, especially in my hips.
Gimel, your post has SO much great info. I need to read it a couple times to absorb it all, as I'm still a little foggy today. The help and support I'm already getting means so much to me I can't even put it into words. I hope posting the lab ranges helps you all helping me. Most of all I'm just happy to find a community where I'm not alone. The last few months have just been insane.
I have almost the exact same lab values and almost the exact same symptoms. PM me or message me on here (not sure I will get it) if you want to compare notes. I am miserable too. Cannot get off the couch.
Along with your results, we need reference ranges for those tests. Ranges vary lab to lab, so you have to post them with results. You can't just look up a generic reference range online; it has to come from your own lab report.
There really isn't a lot that you can do at home to help you feel better. The doctor has started you on hormone replacement, albeit a very low dose. The only treatment for hypothyroidism is replacement of hormones.
There really isn't a lot that you can do at home to help you feel better. The doctor has started you on hormone replacement, albeit a very low dose. The only treatment for hypothyroidism is replacement of hormones.
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From your TPO ab test and your symptoms, and your test results, you have Hashimoto's Thyroiditis. With Hashi's the autoimmune system somehow starts treating your thyroid gland like an invading species and produces antibodies that attack the gland, until over an extended period, the gland is destroyed. Along the way, your normal thyroid production goes down, requiring increasing amounts of thyroid med in order to relieve hypo symptoms. With Hashi's the TSH is more often elevated. since yours was not, it could be that your pituitary is not producing TSH as normally expected.
Your original doctor failed to recognize a problem because apparently only TSH was being tested. I refer to this as the "Immaculate TSH Belief". Unfortunately, TSH is a pituitary hormone that is affected by so many variables that it is totally inadequate as the sole diagnostic for thyroid. At best TSH is an indicator, to be considered along with far more important indicators such as symptoms, and also the levels of the biologically active thyroid hormones, Free T3 and Free T4. Note that Free T3 and Free T4 are not the same as Total T3 and Total T4.
Of these additional tests, Free T3 is the most important because it largely regulates metabolism and many other body functions. Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.
After being tested for Free T3 and Free T4, your next doctor used what is referred to as "Reference Range Endocrinology" and decided that since your test results were within the range, that you did not have a thyroid problem. This is fallacious because the ranges are far too broad. I won't get into the details of why that is so, but suffice to say that many of our members, myself included, report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and free T4 adjusted to around the middle of its range. It would help us if you would also get the reference ranges for FT3 and fT4 from the lab report, since results and ranges vary from lab to lab.
It looks as though your doctor responded to your push for help by giving you a token amount of thyroid med. It is not unusual for a hypo patient to actually feel worse for a short time when starting on meds. Your starting dose is inadequate and you should be looking to increase in about 4, after re-testing Free T3 and Free T4.
Just for comparison to what a good thyroid doctor would do, let me say that he would test and adjust Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results. Test results are valuable mainly during early diagnosis and afterward to track FT3 and FT4 levels as meds are revised to relieve symptoms. You can gain some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance. The letter is then sent to the PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
Note in the letter that the doctor states, "the ultimate criterion for dose adjustment must always be the clinical response of the patient. I have prescribed natural dessicated thyroid for your patient (Armour, Nature-Throid) because it contains both T4 and T3 (40mcg and 9mcg respectively per 60mg). This assures sufficient T3 levels and thyroid effects in the body. Since NDT has more T3 than the human thyroid gland produces, the well-
replaced patient’s FT4 will be below the middle of its range, and the FT3 will be high “normal” or slightly high before the next AM dose."
So, where to go from here. One is for you to make sure that you are always tested for Free T3 and Free T4 each time you go in for testing. Two is to get your doctor to increase your med dosage to at least a half grain of Armour now, and a full grain in 2-4 weeks, assuming you handle the meds okay. Third is to give your doctor a copy of the above letter and ask to be treated clinically, as described. If he has a problem with clinical treatment, then you are going to need to find a good thyroid doctor that will do so.
If you decide to find a good thyroid doctor, we may be able to help with that also. Hang with us and I am sure that you are going to feel much, much better in the near future.