A Medical Update

Me cuddling with newly 7 year old Rose in the place I seem to be
spending most of my time these days, my bed.

It's been some time since I shared what is going on with me and my health situation and I wanted to update you.

Unfortunately, there hasn't been too much of a change. But I guess that means at least things aren't getting much worse. 

The biggest change really is that getting progressive glasses really helped and completely fixed my dizziness. That was a big thing because the dizziness was quite debilitating. Unfortunately, none of the rest of my symptoms resolved.

In December, after months of waiting, I finally started taking synthetic thyroid hormones, at a low dose, to hopefully help with my medical issues, including extreme fatigue. The endocrinologists through my HMO refused to prescribe me this medication, and my GP also refused, so I was pretty much stuck. Then I spoke to my dad, who also works for my old HMO, as a metabolic specialist (in addition to working as a cardiologist), and he agreed to prescribe me synthetic thyroid hormone, because my numbers and my symptoms showed that these meds should help me, even if they weren't extreme.

Two weeks after I started these pills I saw an endocrinologist through my new HMO, who came highly recommended. He listened to my long list of symptoms, said some of them might be thyroid related, but other ones weren't thyroid related, but he was willing to test me for pheochromocytoma, a rare adrenal related thing that could be causing those issues. And he also told me to come back 3 months later to see how the synthetic thyroid is helping me. 

The pheochromocytoma test was a test that was a real pain to take, and involved a really strict diet for 4 days straight, but I did it. And it came back negative for that.

The thyroid meds helped but only slightly. If before I was 100 on a scale of exhaustion, now I'm maybe a 95. A difference, but not enough to actually help.

I went to a neurologist that came highly recommended about nerve issues and pain I was having and wanted him to test for certain things, but he was dismissive and said that it sounds like all my health issues are psychosomatic, and I should see my psychiatrist about that. This was extremely offensive and upsetting to me, because if its all psychosomatic it makes me feel very dismissed, and also hopeless, because if its something psychological then I'm basically screwed because I've been in therapy for 4 years and still in pain and I'm not sure how more therapy is going to help. At least he was willing to prescribe two tests- a CT of my head and an EEG. The CT came back normal and I didn't do the EEG yet.

But because he said it was psychosomatic in his opinion, I decided to reach out to my psychiatrist with my long list of symptoms and I asked him which of them were likely psychosomatic and which likely not, and which likely caused by my meds, and he said not caused by my meds and some might be psychosomatic and recommended again that I do somatic therapy which is supposed to help with that type of pain. He said, though, that my exhaustion doesn't seem to be psychosomatic and I should ask my endocrinologist to raise my thyroid meds.

I did start somatic therapy in addition to my regular therapy and its very, very slow going, and honestly at this point it's hard to feel like it'll work, but I'm spending the time and energy and money on it now, because I'm trying to get better.

Today I went to the endocrinologist again with my latest blood test results, and the doctor looked at them and said that my meds are working fine, my thyroid is acting fine, and no need to change my meds. I told him that I was still suffering, that my body temperature was messed up, I'm always hot and sweating even in cold temperatures, and my thyroid antibodies were high, my body shows levels of inflammation, and my exhaustion is so extreme that I have such a hard time getting up to get the kids to school in the morning and am getting in trouble from the schools, and I need help. I was begging him to please help me and he's like talk to your psychiatrist. I said my psychiatrist said my meds are fine and I should try a higher dose of thyroid meds and he said fine, try taking a higher dose. But beyond that he said he wasn't able to help me.

And I just left the doctor's appointment near tears. I was hoping that maybe we'd finally find a solution, find something to help me, but was left with pretty much nothing.

A local GP has been at least slightly more helpful. He sat down with me and a list of symptoms and gave me a diagnosis which I'll be sharing more about in another post, but he referred me for a few different tests, including an EMG of my arms and spine, and an echo for my heart, plus a few other things.

I have an MRI of my pelvis next week (I wrote next month but then looked at the calendar- it's next week!) and then another appointment with the rheumatologist. And tomorrow I have an appointment with my doctor through the HMO so he can write my referrals for the EMGs and echos etc...

And now I also really need to schedule a sleep study.

Even with all the stuff we're testing, there's so many questions. Not a single doctor has any idea why I am ridiculously hot all the time. Today was a cool day and literally sweat was dripping down my face when I was inside and my kids were cold. It's really frustrating. But at least we have leads about the nerve issues, some other issues, and my constant joint pain. And a sleep study may help to see if I have sleep apnea...

The only actual diagnoses I've gotten thus far have been hypothyroidism and one other thing for another post, but there are so many other issues that I still need to figure out...

I wish I actually had more concrete stuff to share, but oh well, medical mystery me.