No one cares about ur health more than you, sure doctors are educated but sometimes they are so used to routine and standards they forget about exceptions and new findindings. I had head aches n was told to just take medication .... I made them aprove for an MRI long n behold had a brain tumor .... I did research on line n identified my symptoms w cancerous tummors ..... Dr refused to do surgery I was only 20 y/o at the time. Within 7 days I lost my ability to walk, talk, and basically function ... Dr was sure that surgery would not benefit me n my symptoms must be something else.... again advocating for my self w support of family Dr agreed to do brain surgery n it was cancer. Tumor doubled in size within the 7 days I would have died within the next week had he not done the surgery. Long story short money n time is worthless if we don't have our health to enjoy them. Only u know what ur feeling n I wouldn't stop until u get atleast an explanation for ur symptoms
I wish you luck finding someone to help you. Perhaps try a naturopath. You can do a search online for docs in your area. look at www.thyroid-info.com. There's so much more involved in diagnosing and treating thyroid disorders. Not too many docs out there will listen. They prescribe anti-depressants because they think we're nuts. You really have to be your own advocate. I'm tried numerous docs without success. I have an appointment with a naturopath soon, hope she will agree to help me. I hope letting this go for 12 years hasn't been a mistake. I've had 8+ nodules .5cm to 2cm each and they are causing me issues. Guess it's not a big deal and doesn't warrant their time though. Very frustrating.
"In an article authored by Alan R. Gaby, M.D. (B.A. from Yale University, M.S. in biochemistry from Emory University, and his M.D. from the University of Maryland.) that is titled “Autoimmune thyroiditis as a cause of chronic fatigue”, he details a medical research study involving 219 patients with Chronic Fatigue Syndrome (CFS), having severe fatigue of at least 1-year in duration. While only half of the patients were found positive for either antithyroidperoxidase antibodies (Anti-TPO) or antithyroglobulin antibodies (Anti-TG), 40% were found to have definite histological evidence of Hashimoto’s thyroiditis.
Hypothyroidism Elusive to TSH Testing
The study-patients in the research cited by Dr. Gaby MD, had varied TSH readings upon being blood tested (pituitary hormone that reflects thyroid hormone levels) with many falling within normal lab values. The study points out that possibly up to 40% of CFS patients are experiencing thyroid disease that will be responsive to thyroid hormone replacement therapy and that hypothyroidism causing symptoms, can be present despite normal TSH levels. It also points out that FNA may be required to detect autoimmune thyroiditis in a significant number of cases."
To read more: Thyroid Disease and Chronic Fatigue Syndrome: Misdiagnosis and Co-morbid Diagnosis | Suite101.com
"If you suspect low thyroid function, but have had "normal" blood tests, you and your doctor may want to take a second look. A TSH of greater than 2.5 is not normal. (For an appointment with our Naturopathic Doctor, click here.)
Ten years ago, the American National Academy of Clinical Biochemistry narrowed the reference range for thyroid stimulating hormone (TSH) from 0.5-5.0 to 0.2-2.5mIU/L. Similar revisions by the American Association of Clinical Endocrinologists (AACE) meant that 13 million people previously considered to be normal, could now become officially diagnosed with under-active thyroid. (1)
You should also consider the fact that TSH is lower if the blood test is taken later in the day, and if you ate before the test. (2) Other factors can cause an inaccurate TSH reading, such as a deficiency in the adrenal hormone cortisol.
The most important test for thyroid is the blood test for thyroid antibodies. Thyroid antibodies can cause symptoms even when TSH is normal. In particular, they have been shown to have a role in fertility and miscarriage. (3,4)
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)
Untreated thyroid disease leads to heart disease, muscle weakness, poor mental function, and an increased risk for cancer. Some experts believe that it may be responsible for 40% of unexplained cases of fatigue, depression, weight gain and infertility (6)."
To read more: Sensible Alternative Hormone Clinic - Thyroid disease.
While your FT3, FT4 and TSH look pretty good, there is one test in there that is not "normal", the TGab. It's elevated, which probably indicates Hashi's. That should be confirmed with TPOab (thyroid peroxidase antibodies).
I don't think you're wasting your time seeing an endo, depending on the endo, of course. With your elevated TGab, TPOab should be run to confirm Hashi's, unless the endo is prepared to diagnose Hashi's without it.
However, it might be hard to get a doctor to put you on meds because your FT3, FT4 and TSH are within normal limits. Some believe Hashi's doesn't need to be treated until lab values go out of range. Others think it's best to treat early and avoid sinking into hypo hell. You will most likely have to find a doctor of the second philosophy and one who treats clinically (by relief of symptoms). All endos are not created equal...some only want to treat diabetes and are really not good thyroid doctors.
As far as "normal" labs are concerned: We all have a comfort zone within the population range. While I might be comfortable low in the ranges, you might have to be way up in the top for symptoms to be relieved. We will not all be symptom-free just because we are somewhere in the range.
Let us know what your new endo has to say, and maybe we can help you to sort out how good a thyroid doctor he is and what your next move might be if he doesn't think you need to be treated.
I'd add that with all your symptoms and test results showing Hashi's, your Free T3 is too low in the range. Although as goolarra said,, some patients get by with free T3 low in the range. the range is too broad, and many patients do better with higher Free T3. I won't get into the reasons for the ranges being too broad right now, but suffice to say that normally healthy people without hypo symptoms typically fall into the upper half of the range. This is what I call the functional range. Just to be average within the functional range your Free T3 would need to be about 4.1.
Your doctor is wrong in saying there is nothing that can be treated. A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. You can read about clinical treatment in 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 participating PCP of the patient to help guide treatment.
In the letter, please note these statements. "the ultimate criterion for dose adjustment must always be the clinical response of the patient. .............. 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."
Just because you will be seeing an Endo does not mean he will be a good thyroid doctor. Many of them specialize in diabetes, not thyroid. Also, many have the "Immaculate TSH Belief" and only use TSH to diagnose and treat a thyroid patient. That doesn't work. Others will test beyond TSH, but then use "Reference Range Endocrinology" and insist that a test that falls within the reference range is adequate for you. That also doesn't work.
So when you see the Endo you need to find our if he will treat clinically, as described above and in the letter, and also if he will prescribe T3 meds if needed. If either answer is no then I don't have much hope for that doctor treating you adequately to relieve your symptoms.
Should that be the case, if you will tell us your location perhaps a member can recommend a good thyroid doctor for you.
Also, if you haven't been tested for Vitamin A, D, B12, ferritin and a full iron test panel, you should request those as well..
Thank you for your advise! I hope you are well.
Red-Star, Thank you for your information. I am definately going to review the links you provided.
gimel, Thank you for your help! I know that I have low vitamin D and calcium. My pcp told me to start taking bothof these roughly two years ago. I have not had them tested since. I will ask the Endo about this. Additionally, I live in GIlbert, Arizona. Any referrals for Endos would be greatly appreciated. I will keep you all posted after my appointment on Tuesday.
Specifically, get vitamin B12 tested. Deficiency can cause the most debilitating fatigue/exhaustion. I have to keep my B12 level at the top of the range, in order to feel well.
Ok, just got back from the Endo. He is running some more blood tests to check vitamin D again and then is sending me to the hospital for testing on my adrenal function (can anyone explain this to me). If my adrenal function comes back normal he will then start me on levothyroxine at a low dose. He states he would like to see my TSH go down from 2.81 to 1. any suggestions or comments are greatly appreciated! And, thank you again to everyone for giving me great advise. I truely appreciate your support.
The use of thyroid hormones is contraindicated (reason to withhold treatment) in patients with uncorrected adrenal insufficiency. I knew about this warning but needed to start thyroxine ASAP. I had a bad case of adrenal insufficiency so i was ready for some unpleasant symptoms. I just didn't know they would hit overnight!
After i started my first thyroxine tablet (at 2am - insomnia drama lol) i woke up the next afternoon and could barely move or speak. It felt like i had weights on my arms and legs. I was able to slur out a few words at best. It was like i had been heavily drugged. When i could finally get out of bed, i was hit with severe dizziness that afternoon which lasted quite some time. I slept this comatose/drugged sleep for 15 hours a day for about a month. My body numbness worsened (may be adrenal related but not 100% due to affected central nervous system issues). A good contraindication to take note of. :)
when your doctor says that he would like to see your TSH around 1, that sent off alarm bells for me. TSH is totally inadequate as a diagnostic for thyroid even when not taking thyroid meds. When taking thyroid meds, it is practically useless. That is why I gave you the link above, and this quote.
"the ultimate criterion for dose adjustment must always be the clinical response of the patient. .............. 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."
If your doctor does not want to treat you clinically, instead of using TSH, I think you need to find a new doctor.
I've had TPO antibodies for decades and so I've had my thyroid levels checked semi periodically throughout the years but my thyroid didn't begin to fail until about two years ago.
Through much of my late teens and early 20's I struggled with extreme fatigue even though my thyroid levels were fine, and I'm skeptical it had anything to do with my thyroid. I did have iron deficiency anemia though, but I ignored the doctor's suggestion to take iron supplements.
Fast forward a decade later, when I started to actually have hypothyroidism, I did not have fatigue. Instead I became very restless. I started to hate cold with a passion and would shiver when I knew it wasn't cold out. My hair became so dull and poor looking that I, who's hair care regime never strayed beyond shampoo, condition, brush, started buying VO5 hot oil, moderately expensive upscale shampoos and conditioners, and fancy hair revitalizing products. And it seemed I could eat nothing and not lose weight.
In other words, my symptoms were vastly different from the general fatigue I had experienced previously.
The synthroid resolved most of my symptoms within two or three months but the restlessness persisted a lot longer, especially in my right foot. So where am I going with this?
Sometime around Spring of last year I had some blood work done because I had some entirely unrelated issues, and a few months after that, I had an entirely unrelated outpatient procedure, during which time, the doctor commented that the previous blood work I had indicated that my iron levels were borderline low. Again, I ignored this because I felt fine and have you ever tried to swallow an iron pill anyway?
So sometime around November I began to wish I had a Lazy Boy, and slippers, and a TV, because the second I got home, even if it were 4pm, all I wanted to do was get into my pajamas, sit in a comfortable chair, and veg in front of a TV. I was achy and runned down to the point that I didn't want to do much of anything. It was like the night before the morning you come down with the flu, only I never got the flu. But my thyroid levels were fine.
My iron levels, however, were still borderline low, and I was borderline anemic. So with the blessing of my doctor, I started taking Slow FE every two to three days for about two weeks, with an orange, and I started feeling better within three days.
I regret not having tried the iron pills years ago.
So you might want to get your iron levels checked. It's dangerous to just start taking iron pills unless you have proof your level are low though. They need to be taken under the directions of a doctor.
Thank you for your input. With all my fatigue and complaints to my pcp she has run all kinds of bloodwork. She checked for Mono, a reoccurrance of Hep C and every other test under the sun including my iron levels. All those tests came back normal with the exception of my vitamin D and calcium which were borderline low. The Endo was impressed with all the labs I provided him from the last four years. He said that they only test that needed to be done at this time is the Adrenal function test becuase my pcp had covered all the other tests. However, he did suggest that I might want to see a rheumatologist to rule any additional autoimmune issues that the Hep C may have casued. I am scheduled for the adrenal function test next week. I hope that comes back ok. I was reading online (as I do not kow much about adrenal function) and I am a little concerned.
Thank you again!
Ok, so I went to the hospital today for my adrenal function tests. The nurse checked my vitals then administered the medication then checked my vitals again. He seemed quite concerned that my vitals did not change after I had the meds. He said that usually patients that receive the meds have a rise in both their blood pressure and their pulse as the medication is essentially a large dose of adrenaline. I had neither! He wouldn't confirm that this was a problem or issue. All he said was that he is not a doctor and couldn't tell me anything. Why tell me your concerns about my vitals not changing then tell me you can't tell me anything. Did anyone else have these issues? Does anyone know what this could possibly mean? I am concerned.
Just read your mention that your test results came back "normal". Due to the way reference ranges are established, just being anywhere within the range is frequently inadequate. Many members find that they need to be around the middle of the range, or higher, for some tests. If you will post your test results that fall within the so-called "normal" ranges, members can comment on their adequacy.
My test results are in my original post above. Thanks for you inpit again.