Well, I guess my mild siesta from steroids was actually too good to be true. Yesterday I took zantac and allegra at 1:30 p.m. in the afternoon and still ended up waking up at 2:46 a.m. last night with a crazy hive attack – the worst one I have had in a while actually and I was super itchy. It was obvious that I had slept through the beginning of it for it to have gotten that bad. I really wanted to go back to sleep and stop itching so I went ahead and took zantac, allegra and prednisone just so that it would take care of the hives promptly. Essentially I broke my streak of being off steroids AND I had to take more antihistamines after making it only about 13 hours in between flare ups. It is somewhat disappointing after my recent blog post about progress with weaning off the pills that I now seem to be going in the opposite direction again. It is really like there is no rhyme or reason to it sometimes.
This morning I had my follow up appointment with my thyroid specialist, Dr. A, about my thyroid ultrasound and my recent thyroid blood work. The ultrasound showed that my thyroid is swollen and inflamed due to the Hashimoto’s, which was expected. Apparently I also have a very small nodule on my thyroid. She said that it is too small to biopsy and therefore too small to worry about at this point. She also mentioned that it is very common for Hashimoto’s patients to have nodules on their thyroid, so I shouldn’t start freaking out that it could be cancer just yet. As far as my blood tests go I am happy to say that I do not have celiac disease – which I had already mostly assumed but it is still good to get confirmation on that one because I LOVE gluten. She also said that my thyroid levels came back just fine, so according to her she has done her job. I asked her what to do about the hives and she said that it is the allergist’s problem, not hers, although she didn’t say it in those words. As a thyroid specialist there is no real treatment for Hashimoto’s thyroiditis, only treatment if you have a hypo- (low) or hyper- (overactive) thyroid. I was hypothyroid due to the Hashimoto’s attacking my thyroid, but now that I am on synthroid (I actually take the generic – levothyroxine**) my thyroid levels are fine. I need to keep taking the synthroid to keep my thyroid levels where they need to be, but really she has nothing else to offer me besides the pills I am already taking. I will mention that she didn’t test my thyroid antibodies, which is the test I originally had my family doctor do to discover that I had Hashimoto’s. She explained that once I tested positive for antibodies I will always test positive. The level of antibodies will only fluctuate (such as in times of high stress) but it doesn’t really mean much. Hashimoto’s is a lifetime diagnosis with no “cure.” Dr. A also mentioned that she has seen other Hashimoto’s patients get hives, but never seen anyone get them this bad or for this long, so in a way she did acknowledge that the two correlate with each other somehow.
It is super frustrating to me that none of the doctors I am seeing seem to want to take responsibility for figuring out how to control my hives. Pretty much everyone is pointing their fingers at the allergist at this point to figure out what is going on, so I took some time after my appointment with Dr. A to pop back over to the Pinnacle Health outpatient center and got my blood taken for the allergy testing. I really wanted to just scream with frustration because I should have had my results already when I met with Dr. A if the ENT hadn’t totally screwed up the allergy testing process by trying to schedule me for a prick test first. I believe they said it will take about 3 weeks for the results of the blood test and then I need to schedule a follow up appointment with the ENT to go over those results and see where to go from here. So… more waiting. I don’t have a follow up with Dr. A until July, because like I said she feels like she has done all she could. I will be getting another thyroid ultrasound before I see her in July to monitor the nodule, as well as more blood testing to make sure my thyroid levels are still good.
The issue is that everyone is just troubleshooting the small area that they specialize in and trying to fix that aspect of my body, rather than looking at my body and my health as a whole like a functional medicine doctor would. This is also making it easier for them to act like the hives aren’t their problem or responsibility, since it doesn’t fall under their specialty. I was really starting to think that I would be able to continue to wean myself off of my pills until I don’t really get hives anymore. That would mean that I wouldn’t have to see the functional medicine doctor and spend all of the money that comes along with that – I would just be “fixed.” After my hive flare up last night and from what Dr. A said this morning about how there is nothing more she can do on her end, I find myself thinking that probably isn’t going to happen. Unless the blood allergy test results come back and they say that I am allergic to air or something, I have a feeling that following through with the functional medicine doctor will be my only choice to get back to full health.
**Many don’t know this, but I have found in my research that synthroid and levothyroxine (the generic for synthroid) are different in that synthroid actually contains gluten. People with thyroid issues that also have celiac disease or gluten sensitivity typically see an increase in symptoms when they are started on synthroid for this reason. If you are unsure, I would suggest checking with your doctor and switching to levothyroxine – it’s cheaper to get generic anyway. I always refer to my thyroid pill as synthroid even though it is technically levothyroxine just because it is easier for me and for readers (with “throid” in the name I think it makes it obvious that it is my thyroid medication).