Posted 1/23/2014 5:15 PM (GMT -6)
I was hoping to get some help with getting a proper diagnosis. I'm struggling to get a referral to an endocrinologist from my primary care doctor. Apologies for the length, but I've been dealing with these issues for a long time. If you'd rather not make your eyes bleed but still would like to help just skip to the section titled, "QUESTIONS".
I'd like to give you a little background about my history. I've struggled with fatigue and depression since the fifth grade. I have a history of autoimmune issues having had two Reactive Arthritis events, one in college with severe monarticular arthritis in my right knee leaving me unable to walk for three months, and a second about three years later with severe iritis which almost blinded me in my right eye. I carry the HLA-B27 gene. Since then I've had periodic arthritis, weird aches and pains, rashes that come and go, EXTREME exhaustion, etc. I always thought it was part of the Reiter's, which doctors never did much for me even during major episodes so I just accepted feeling this way as my new normal. Then ten years ago I was prescribed an antibiotic, minocycline, which gave me drug-induced lupus, liver damage, and depersonalization episodes. I've never been quite the same since.
The last five or six years though things have been progressively getting worse. In addition to more arthritis in more places, I'm also getting muscle cramps, eye pain, sensitivity to hot and cold (this doesn't properly describe the temperature hell that I go through - from sweltering to the point I fog up the glasses on my face to insanely cold wearing three layers in the summer...all within minutes of each other), strange pains (for instance, sometimes if feels as though I have a nail embedded in my finger with the pointy side facing out so that when I put pressure on it it feels like the outside flesh is being pierced from the inside - weird, I know), even more fatigue, more depression, insomnia, and what can only be described as a feeling as though I have liquid arthritis flowing through my veins. I basically feel like I have the flu about 70-80% of the time.
I've been living like this forever, and probably would continue to do so, but the cherry on this pile of crap that is my body was a heart attack last April. At the time I was 38, a bit overweight, and tested with a LDL cholesterol level at the time of admission at over 300. I realize there are some big problems with that list, but my Mother is in her 60's, also has high cholesterol (although I don't know if it's the LDL that's the highest in her case), is much more overweight than me, and I've always been more active. She hasn't had a heart attack. My cardiologist has no idea why I had one. I'm not even freaking 40 yet, what the hell?
Thankfully the day I walked into my local clinic I had high enough inflammation levels for a referral to a rheumatologist. The rheumy did some tests and my TSH level came back at 5.49. With that he diagnosed me with Hashimoto's Thyroiditis, prescribed me Levothyroxine, and sent me back to my primary care for a endocrinologist referral. A discovery which was, while disconcerting that I have another autoimmune disease, exhilarating because all of the symptoms I'd been suffering from for years suddenly fell into place: depression, sensitivity to heat and cold, fatigue, high cholesterol, brain fog, poor concentration, dry skin, dry coarse hair, hair loss, constipation, inability to lose weight, cold hands and feet, lifelong eczema, numbness and tingling all over, TMJ, and more.
Unfortunately my primary care physician doesn't agree with the diagnosis. He said that he doesn't treat TSH levels until they get above 9. My primary care ordered a second TSH test on the spot and of course my TSH was down to 2.-something. I say of course because I still had Levothyroxine, which I've read has a half-life of 6-7 days, in my blood. I had only stopped the drug a few days before. Unfortunately I didn't think of this fact at the time, but it wouldn't have mattered anyways since his criteria is above a 9. Needless to say he won't let me see an endocrinologist and has sent me to another rheumatologist for a second opinion.
I just got back from that visit the other day with an additional diagnosis of Fibromyalgia and a note for my primary care doctor to get a referral to an endocrinologist for "thyroid problems". I have an appointment to see my primary care doctor later on this month.
I wanted to add, that after digging around about these test results I discovered that aspirin apparently lowers all thyroid hormone measurements, "Single-dose aspirin or salsalate decreased ... various total and free thyroid hormone measurements. One week of aspirin or salsalate decreased total T(4), free T(4) (salsalate only), total T(3), free T(3), and TSH."Ref. 1 Needless to say that after the heart attack I'm on a daily dose of aspirin as well as a blood thinner and blood pressure med.
Additionally according to the Cleveland Clinic, "High dose-salicylates (aspirin, salasalate) displace T4 from binding proteins. … In patients using these medications, only TSH measurements should be used."Ref. 2 It looks as though only my TSH is elevated. I'm still having trouble understanding what's what, and even what has been tested from the reports I've been able to get from my doctors. From what I can tell or have been told my other levels are normal.
That said, even if there weren't mitigating circumstances regarding the accuracy of my test results, even a 5.5 is high enough to be diagnosed as hypothyroid from what I've read. According to the American Association of Endocrinologists in 2003 Ref. 3, "Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04." So even at the old levels, my TSH is on the high side. If you add into that fact that my levels are lower due to daily aspirin use then I'm quite sure that I'm hypothyroid. Given my history of autoimmune disease, I feel there's really no other explanation for my hypothyroidism than Hashimoto's. Forgive the lengthy treatise, but this has been so frustrating I could spit nails. I do want to state that I have yet to bring up this new information I've gleaned to my doctor who, as I've said earlier, I have an appointment with later this month.
What I'd like to know is given my TSH levels (test results attached), do you agree with my first rheumatologist's diagnosis? Obviously from all this I'm inclined to agree with him, but I've been getting this vibe of poo-pooing the crazy girl from my primary care doctor, but then again I could be paranoid. Am I insane? Am I a complete idiot and taking all of this research and information about my test results wrong? If you answered yes to either of those questions I'm sorry to have bothered you, sincerely so. If you answered no and suspect I am right that I do look as though I may have hypothyroidism and Hashimoto's, then how do I talk to my doctor about this since he seems dead set against it? I don't know who to turn to, or even if I did I don't know how to talk to them to get them to realize what I'm going through. I tend to clam up, and I seemed programed to engage in totally codependent behaviors wanting people to like me, and who likes someone pissing and moaning about their health. Half the time I'm out and about (which isn't often, I'm a virtual shut-in), I'm cracking jokes trying to get people to laugh. I feel guilty for being sick. How screwed up is that?
Now I'm digressing. I think I've tried to be clear enough about what I need to know: am I on to something with this Hashimoto's diagnosis, and if so, how do I talk to my doctor. If it was up to me I'd go to someone else, but my options are limited with the low-income plan I'm on.
If anyone has read all of this you are a saint. Regardless of whether anyone has the time to read this insanely long post, I wanted to say that this looks like a great forum with a welcoming community and I'm thankful to have found it. I hope that you and yours are healthy and happy.
TSH test: http://postimg.org/image/f4k4y62pv/
PS: Apologies again for the length. I tried to be brief, but did not succeed. I may have repeated myself or skipped around a bit. My editing skills have been lacking and I have trouble concentrating, so apologies for any confusion in the text.
Ref. 1: http://www.ncbi.nlm.nih.gov/pubmed/14671157
Ref. 2: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/hypothyroidism-and-hyperthyroidism/#cesec6
Ref. 3: http://www.hospitalsoup.com/public/AACEPress_release-highlighted.pdf