So, Do I Have Hashimoto’s, or What?

posted in: Adult Life | 1

My answer at this time: Beats me!

I’ve had the runaround these past few months from the medical profession. To re-cap, in my post about being diagnosed with Hashimoto’s Disease, I discussed being diagnosed with the hypothyroid and autoimmune disease and the treatments I was working through at that time. I detailed the Autoimmune Protocol Plan (AIP) eating that I completed earlier in the year in my post here.

The diagnosis of hypothyroidism was completed by a naturopathic doctor that I was seeing due to being unhappy with my prognosis from my primary and OB at my major medical HMO. The HMO’s prognosis had mostly consisted of “you’ll probably always feel this way” and “there’s not much you can do about it”. I wasn’t ready to settle for that. The insurance plan we had at the time covered alternative care like naturopathic medicine so I sought out a doctor that specialized in women’s hormonal diseases and disorders and saw her for several appointments in 2015.

She, right off the bat, was adamant that I definitely had something more going on that the vague diagnosis of PCOS (Polycystic Ovarian Syndrome) that our HMO had given me years ago. She dove into a lengthy medical questionnaire and ran some tests. By the middle of the year, it was determined by lab work that my body was attacking my thyroid in a pattern that revealed an auto-immune disease.

So, at this point I was told that I didn’t just have hypothyroidism, I was told that my body was attacking itself and that I would always have this disease that needed to be managed.

It was my naturopath doctor that recommended the AIP eating plan because it was one of the things that I could control and actually help my own healing. I completed this in January and February of this year. While I did rush food re-introductions per the protocol’s recommendations, I also knew that I didn’t have any of the chronic stomach upset and problems that many auto-immune sufferers have, so I knew that re-introductions would go quite smoothly for me, and I was right. My symptoms have always been more hormonal in nature and are the dull underlying reminder that I always feel off, but haven’t been the type that knock me out and keep me in bed for a week, like someone with say, Celiac’s might experience.

Late last year, I received the startling news that a change in my insurance coverage meant that naturopathic services weren’t covered any longer. I had gone to the naturopathic doctor four times during the time that I wasn’t covered, and hadn’t even known that the visits wouldn’t be covered at the time I had gone to see her. The cash patient price was more than I could afford to continue seeing the naturopathic doctor. Sadly, I’ve had much trouble settling final bills and found that the doctors office’s business practices have been quite poor throughout this time, and decided that even if I could afford her astronomical rate to continue seeing her, that I wasn’t going to.

I decided that since I pay a nice chunk of money out of my paycheck each month for our family to have health insurance, that I would go back to my major medical insurance and demand treatment for the thyroid disorder through them. In the past, I had had trouble with my health organization recognizing the thyroid disorder. They stated that Eastern doctors (naturopathic) and Western medicine doctors (pretty much everyone else) practice medicine quite differently, and that just because an Eastern medicine doctor said I had a thyroid disease, they didn’t necessarily think I did too. But, I now had test results that showed the thyroid antibodies present, and I thought that this was absolute proof that I now had a solid diagnosis of a thyroid disorder and that there was no way that my primary doctor could not recognize that.

In February, I met with a young doctor filling in for my primary, who was on maternity leave. I showed him the lab results, discussed my problems with him, and stated that I wished to now receive treatment from their organization for the issue, so that it would be covered. I explained that I was no longer going to seek out the naturopathic services and that since the lab results PROVED a thyroid disorder, there should be no reason why they should not treat me for it, continue prescribing the thyroid medication and help me manage the disease ongoing.

The doctor listened intently, asked follow up questions, and reviewed the nautopath’s lab results I had brought with me. I told him about the AIP plan and the supplements the naturopath had had me taking. He hadn’t heard of any of the supplements or the AIP plan. He then told me that lab results of my nature aren’t necessarily evident of a thyroid disorder or autoimmune disease.

I was speechless at that point. Here I had been told that I, without a doubt, had Hashimoto’s disease. That I most certainly had hypothyroidism. This guy, who was more or less my age, so possibly very recently out of medical school, was telling me that recent studies on thyroid disorders mean that many patients testing positive for thyroid antibodies don’t necessarily have the disease.

This shocked me. I felt like everything I knew and was working towards on my health at that time was quite possibly for nothing. Was it true that I didn’t have a thyroid disease? I felt so confused.

 

He proceeded to tell me that everything I was describing was indicative of PCOS and that he had reviewed my chart before my appointment and felt that a diagnosis of PCOS was more likely than that of an autoimmune disease. He told me that people with Hashimoto’s disease had thyroid antibody levels in the 800-1000 range or higher. Mine were 258.

I asked him if those people with those antibody levels of 800-1000 were quite sick, and he said yes. I then explained that I was trying to address what I could, head on, before I got to that point.

He then offered to review my chart more thoroughly after my appointment and see if there was anything that was missed in the PCOS diagnosis that he might be able to test for. He ordered labs for my TSH level to be completed that day. I asked him what to do about the thyroid medication that I was nearly out of. He said, based on what we had discussed and depending on what my lab results were after having the blood drawn, that he was not comfortable prescribing further thyroid medication to me. I had about 10 days worth of my current supply left, and then I would be out.

I left his exam room shell shocked and exhausted. I was tired of the fight. The fight that I felt that I shouldn’t have to just accept that I would always feel off, that the symptoms I had were normal and that there wasn’t anything I could do about it. And just when I thought I had found someone to understand and figure out what I was going through, I was back at square one.

I went and had the blood drawn before I left the building. The thyroid results later in the day were in the “normal” range, but I expected this – I had been on thyroid medication by eight months or so by that time. If the dosage was fairly correct, of course my thyroid was in a normal range, because it was being managed. Because the result was normal, he did not prescribe the medication.

The doctor stayed true to his word. He called me about a week later. I’m pretty sure that’s the first time a doctor from that organization had called me after an appointment to follow up, so I thanked him for this. He said he had reviewed the labs, reviewed my chart once more. He said he felt that everything had been done properly in previous years to correctly diagnose what he thought I had: PCOS, and nothing more. Therefore, he explained, this was just a hormonal disorder I would always have. No, there wasn’t medication I could take for it. No, there weren’t supplements that would help. He said he had researched the AIP plan and decided it sounded pretty good, and that I should continue it if I felt like it.

So, since mid-February, I have been off of thyroid medication. I still have low energy levels. I know I have to give myself credit for the busy lifestyle, but I definitely used to have more energy than I do now. For about the past month, I’ve been losing hair as well, quite a bit of hair. I have thick hair, and have always lost some while shampooing or brushing, but the hair loss as of late is quite startling. I got a haircut recently and, although I warned the stylist before she shampooed me, she admitted later that it was an abnormal amount of loss and asked if I’ve ever had my thyroid tested.

“In my experience, most hair problems or changes have to do with a women’s thyroid. We learned that in cosmetology school.”

I quickly changed the subject, not wanting to get into it. The poor girl didn’t need my life story.

So friends, I sit here stumped and confused. The frustration I feel from all of this is disheartening.  I don’t know who to believe as far as a diagnosis, or should I say, lack thereof.

So, right now, I’m coasting. I haven’t been following the AIP Plan as diligently as I should. Once I had reintroduced the foods that were important to me and helped create rounder and more satisfying meals, ones that didn’t leave me feeling deprived, I got sloppy. Between spending time with friends and family, a little traveling and two weddings in these past months, I got in the bad habit of eating whatever looked good at the time again. It sure has been nice to partake in those special occasions, such as when my now four year old son requested spaghetti, meatballs, garlic bread and broccoli for his birthday dinner. Three months ago, I would have watched longingly as my husband and son ate it alone, and I ate a salad. But I ate the damn spaghetti. Life is short. But going back to the more diligent AIP plan with my re-introductions would not be a bad thing. And again, it’s sort of the one thing I can control in all of this.

Friends, have you ever had this happen to you? Finally gotten some answers to medical problems, only for another medical professional to disagree? I’m at a loss of what more I should pursue, if anything. Several people have recommended switching medical insurance providers when I’m able to. That maybe it’s just this particular organization who is being less than helpful. That’s something that we as a family might consider, during the open enrollment time offered by my employer.

  • DRS

    I just watched your videos and read this post. My daughter has had Hashimoto’s since age 9 and we have encountered nearly everything you mentioned, from the HMO doc who says you’re fine to the dodgy naturopath who isn’t covered by insurance, along with the PCOS diagnosis. With a TSH in the 5’s and positive antibodies, I’d venture to say you definitely do have Hashimoto’s Have you ever checked out the facebook groups? My favorite is Hypothyroid Advice & Support-A Group That Ensures Your Privacy. SO MANY DOCS and endo’s know very little about this disease. We have to fight as patients for everything. Even with my daughter’s experience, we are still trying to get her levels adjusted and I am trying for a diagnosis myself within the past year. It is highly genetic and my mother has it also. Best of luck to you, and don’t give up!