In case you were wondering what my actual diagnosis is, it is Polyglandular Automimmune Syndrome Type 2 or, for less of a tongue twister, Schmidt's Syndrome.
Try saying either 3 times fast.
According to John Hopkins Medicine, Schmidt's Syndrome is defined as:
the combination of autoimmune adrenal insufficiency (Addison’s disease) with autoimmune hypothyroidism and/or type 1 diabetes mellitus (T1DM)
Thankfully, I do not have diabetes. However, I do have a form of autoimmune hypothyroidism known as Hashimoto's Disease. It is actually quite common and affects some people more than others. For a fraction of people, Hashimoto's is a devastating diagnosis that forever impacts their lives. Others are able to more or less lead normal lives with proper medication.
I generally put my thyroid issues on the back burner. Compared to Addison's Disesase, it sometimes seems minor in comparison. In reality, thyroid health is crucial; every single cell in your body has a receptor for thyroid hormone. In Hashimoto's, the body swings back and forth from hyperthyroid to hypothyroid.
I went for over a year without running blood tests on my thyroid function, I was so focused on the Addison's Disease and slightly insane from the mega dose of Dexamethasone. Not great reasons, but honest ones.
When I finally switched to Dr. Jim and he agreed to run a full thyroid panel, he was shocked at the results. As I have blogged about before, he could not believe I could walk or even get out of bed, that's how low my thyroid levels were.
I started on a small dose of a T3/T4 medication called Novotiral. I felt better for the first few months, and then my symptoms started returning. I've been told this is normal adjustment. Dr. Jim and I slowly increased my dose to a full pill each day. When we ran my blood work again, everything was in range but my TSH, which was 0.01.
TSH, or Thyroid Stimulating Hormone, has long been the standard for determining thyroid function. Which is pretty confusing, since TSH is made by your pituitary gland, not your thyroid. The pituitary gland is one of the most sensitive glands in your body and creates a precise amount of TSH to stimulate your thyroid to produce the proper levels of T3, T4, and all the other Ts.
When my blood work showed everything in range but a TSH of 0.01, my first thought was - that makes total sense. If I'm taking thyroid hormones orally, then my pituitary gland doesn't need to tell my thyroid to make any. Seems logical, right? When my Dr said he felt the same, I thought "Great" and put my focus back on reducing my steroid dose.
My new endo has a different view, one that, as I have researched online, is backed up by the best thyroid doctors. She felt that a TSH of 0.01 pointed to over-medication. That the medicine should support thyroid function, not replace it completely. She called this sub-clinical hyperthyroidism.
The "sub-clinical" part meaning that it would not show on a test (at least not a test of T3, T4, reverse T4, etc) and the hyperthyroidism because even though my T3 and T4 are in range (not high), they are high enough to have made the super sensitive pituitary gland stop producing TSH.
Without TSH, my thyroid is not working. So even though it is HYPERthyroidism, it is also HYPOthyroidsim, in a way, since my thyroid is not functioning.
Are you confused yet? Yes?
Good, we're on the same page then.
I Googled the symptoms of sublclinical hyperthyroidsm, and here's what I found:
- Increased appetite, diarrhea, or constipation
- Increased sweating and heat intolerance
- Nervousness, restlessness, tremors, and difficulty sleeping
- Fast heart rate and fast breathing, even at rest
- Painful lump in your neck or bulging eyes
- Fatigue and muscle weakness
- Decreased or absent monthly periods
BIG yeses to basically all of the above. I don't think my eyes look bulging, but I'm probably biased.
In case you were wondering why I didn't zero in on these symptoms sooner, here's the list that comes up when you Google low cortisol symptoms:
- Mental and psychological ailments such as depression
- Faintness and dizziness
- Weakness and fatigue
- Heart palpitations
- Emotional hypersensitivity
- Inability to cope with stress
- Social anxiety
- Muscle weakness
- Headache, scalp ache, or general body ache
- Nausea, diarrhea, and vomiting
- Abdominal pain and hunger pain despite an empty stomach
- Extreme craving for salty foods
- Anxiety and jitters
- Clumsiness and confusion
- Motion sickness
- Insomnia and dark circles under the eyes
- Symptoms of IBS
- Irregular or non-existent menstrual period
Notice any similarities?
You really should, since I put them in bold.
To fully alleviate these symptoms, I need to properly manage my thyroid, as well as my Addison's Disease.
Despite reducing my dose of thyroid medication for the last 6 weeks, I had my blood drawn yesterday and my TSH is still 0.01.
I sent the results to my endo and I'm sure she will want to reduce the thyroid medication further and re-test in another 6 weeks.
It's a long process. And I'd be lying if I said I wasn't over it.
I'm not trying to complain, just paint a picture of how confusing and discouraging life with Schmidt's Syndrome can be. Some people feel like talking about symptoms is the same thing as whining about them. I feel like if I can't honestly say what day to day life is like, what the last months and years have been like, it's not a true friendship. Why should I have to censor my reality? I have been living with a TSH of 0.01 for almost a year. It's a real problem, with real consequences, that affect me each and every day.
So are the other conditions which I am more likely to develop, like vitiligo, celiac disease, alopecia, pernicious anemia, myasthenia gravis, idiopathic thrombocytopenic purpura, Sjogren’s syndrome, and rheumatoid arthritis (John Hopkins Medicine).
So far, I've only developed some minor patches of vitiligo. Here's hoping it ends there.
Love,
an Addison alien
who supposes she should change her name to Schmidt's something or other, but really, what sounds good with Schmidt?
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