Should I see an endocrinologist? What tests should I ask about?
Hello! I've never visited this board before, but it looks like you are a wealth of information! I'd really appreciate it if someone could give me their thoughts on my situation. I'll try to keep it brief, but I'm not very good at that!
I'm a 30 year old woman. When I was 17 I developed a nodule (large enough that it was fairly obvious) and it was biopsed and I was told it was a Hurthle Cell Tumour. I had the isthmus and right lobe of the thyroid removed without any complications. Over the years since then I've had the function tested many times and it's always come back normal. My doctor even suggested an ultrasound a couple years ago and the thyroid looked fine though it was covered in many small benign bumps (I can't remember their clinical name) which I was told was not a concern. In my early 20's I was diagnosed with Polycystic Ovary Syndrome. I have also recently found out that my blood sugar levels are pre-diabetic.
I have 3 children. During my last pregnancy 2 years ago I started to get sick. I developed mild neuropathy (patches of tingling on my skin), heart palpitations, migraines, and frequent diarrhea. When I gave birth I felt better for a few months, then got REALLY sick. I have really bad cold intolerance now and poor circulation especially to my feet (they turn grey/purple when cold). I have significant polyneuropathy (tingling and numbness and itchiness and weird sensations). I feel like I'm coming down with the flu a lot, but never actually do - just get the muscle and joint aches, headaches, fatigue, etc. I often have diarrhea. I suddenly developed bad heartburn which I need to be on Nexium to control. I am more irritable than normal. Sometimes I get quite weak (especially legs) and shaky. I get migraines and blurry vision. Sometimes my hands and feet are mildly swollen, especially in the morning. Lately I am starting to flush for no reason and also get chills for no reason and can't warm up (no fever). The heart palpitations come and go, but are quite scary. I get muscle spasms in my calves at night a lot. I'm sure I'm leaving out several things - I feel like I'm falling apart! I also get these episodes that last maybe 4 hours at a time and are terrible: chills, diarrhea, bad tingling in my legs, weakness, extreme fatigue.
I've had all sorts of tests run over the last year. My TSH and T3 and T4 have been tested more than once. I don't have copies of the reports, but I was told the numbers were normal so no one is concerned about my thyroid. The only really abnormal test result I've gotten was that my ANA (antinuclear antibodies) is a high positive (1:640 speckled). I was tested twice for all the antibodies associated with the connective tissue diseases like lupus and RA, but they've been negative. My ferritin (iron stores) are low, but my hemoglobin is normal. My blood sugar has been a bit elevated, but not quite diabetic levels.
I've seen a neurologist and 3 rheumatologists plus the occasional visit to my family doctor. The neurologist ruled out MS and diagnosed neuropathy and atypical migraines but doesn't know what is causing them. One rheumatologist thought I had a connective tissue disease (specifically he was thinking scleroderma because I get a sensation of skin tightness on my face though the skin hasn't actually changed at all visibly). The next rheumatologist said she didn't think that was it at all. They all agree that I am developing an autoimmune disease but don't know which one yet. Meanwhile I feel miserable. I can barely drag myself around and take care of my children, plus I'm terribly worried about what the future holds and very frustrated that I can't get any answers about my illness.
So, my question is: do you think I need to investigate the thyroid any more? Should I ask to be referred to an endocrinologist? I know that my symptoms aren't typical, but many of them show up on lists of symptoms of thyroid dysfunction. I have a strong family history of thyroid disease too. My mother's cousin died suddenly of undiagnosed Hashimoto's when she was a teenager. At that point everyone in the family was tested and many family members were found to also have it, including my aunt but not my mom. My dad has type 2 diabetes.
I'd bet my next-to-last dollar that with that list of symptoms and your history diet that you are hypothyroid. We could confirm that if you will get the results and reference ranges from your thyroid tests earlier in the year.
I think that you need to get tested for Free T3 and Free T4 (not the same as Total T3 and T4). along with TSH. Also, it would be good to test for Vitamin A, D, B12 (especially), and a complete test panel for iron anemia.
I expect that what you are going to need most is a good thyroid doctor. that does not necessarily mean an Endo. A good thyroid doctor is one that will treat you clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve hypo symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not test results. You can get some good insight into the type of treatment you will need, from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
Thank you for your reply! I will take a look at the PDF you attached in the morning... it's midnight and I need to go to bed!
I didn't know that there were specialists for thyroid disorders; I thought they were dealt with by endocrinologists. I haven't seen an endocrinologist for more than a decade anyway, just saw one a couple times after my surgery. I have to ask my family doctor to help me find one then. Fortunately I live in a big city with several large hospitals and every sort of specialist possible.
One thing I wonder about... I'm not overweight nor am I gaining. I am 5'6" and 120 pounds so I'm on the low end of normal. Does that necessarily mean that I can't be hypothyroid? I always hear that hypo is associated with weight gain and hyper with weight loss. My family members with Hashimoto's are all overweight and have problems losing any weight. After my first child was born I actually dropped weight very, very quickly and went down to about 105 pounds which was certainly an unhealthy weight for me. I had my thyroid checked at that point too and was told it was fine. However I didn't have any of the other symptoms I have now at that time... I felt pretty healthy. Now I definitely feel SICK.
Endos are supposedly the thyroid experts. Unfortunately most of them are hung up on the "Immaculate TSH Belief" and only want to diagnose and medicate a hypo patient based on TSH. That does not work. Some will go a bit beyond TSH and test for Free T4, but then they use "Reference Range Endocrinology", by which they will tell you that a thyroid test result that falls anywhere within the reference range is adequate for you. That also does not work for hypo patient with test results in the lower end of the ranges. The ranges are far too broad.
It also seems to be difficult to get many endos to even test for Free T3, because they will tell you that if they know Free T3, then they can adequately estimate free T4. This doesn't work at all when a hypo patient is not adequately converting T4 to T3.
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.
A good thyroid doctor is one that will treat a hypo patient clinically as I described above. Rather than search for one by just taking your chances on a new doctor, I have two options for you. One is to tell us where you are located and it is always possible that a member can recommend a good thyroid doctor for you. The other option is to select some doctor prospects and call and tell them that before making an appointment you want to ask a nurse two questions. Then ask the nurse if the doctor is willing to 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. The second question is whether the doctor is willing to prescribe T3 type meds. If either answer is no, then keep looking.
Since you are seeing your doctor in a few weeks, Please make a point of getting copies of your lab reports so that we can see what tests were done and where the results fall in the ranges. I know that in Canada, with the National Health System, it is much harder to get the right testing done and the right medication if you need T3.
When you see the doctor, I suggest that you should request testing for Free T3 and Free T4 (not the same as Total T3 and T4), along with the TSH they always run. If the doctor resists testing for Free T3 and Free T4, then insit on it and don't take no for an answer. Also, you should try to get tested for Vitamin D, B12 and a full panel of tests for iron anemia. That would be a good start toward diagnosing your status.
I would also suggest that you make a copy of this link and mark up the hypo symptoms that you have. That usually makes an impression. You can also tell the doctor that you have done some research and that you know that there are scientific studies that show that Free T3 correlates best with hypo symptoms, while Free T4 and TSH do not correlate. You should also make sure to ask the doctor the two questions I mentioned above, to see if he is willing to treat clinically.
Just in case you are not familiar with the difference between Free T3 and Free T4 and the Total T3 and Total T4, the totals represent the total amount of T3 or T4 in your body. Most of that is bound up with protein molecules and thus inactive. Only the small portions that are Free of protein are biologically active. That is why you need to know those levels.
You're right about not having a recommended doctor for your area. the best I can provide is a link to the Top Thyroid Doctors for Canada. There are several that are in Toronto. You can read the feedback from patients and see which ones are the best prospects. If you want to pursue one of them, then you can call and ask his nurse the two questions.
Any questions you would like to hit us with before your appointment, we''ll do our best to clarify.
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