She explained that many endos are not comfortable with using it since its use is not text book protocol yet. It was so nice to hear the truth instead of the "do no harm" and other excuses why it's bad. She did not seem in favor of NDT but said she has two patients that are using it (sounds like they are very demanding and it's the only way she could satisfy them- good for them!)
She did bring up other causes of fatigue/brain fog which turned into a very interesting conversation. She is also recommending a sleep study to rule out sleep apnea (both my brothers have it) or other sleep disorders since sleep deprivation can cause the same symptoms. She also pointed out that my airway is very small and could be a contributing factor to poor sleep. I am going to go through with it since the more I think about it, the more I am paying attention to how I sleep and am noticing how truly messed up it really is. Telling her I get up a 4 AM each morning didn't help either. But when I take naps all the time I am still getting 7-8 hours of sleep each night. She asked about restless legs and I didn't think I had issues but after thinking about it- would that include mild numbness/tingling at night? I never thought much about it because I have so many more "issues" that come to mind over that. We talked about magnesium.
We talked about Vit D and she agreed that the 4,000 IU daily dose is good. Every nurse/doctor I've told that to so far has raised an eyebrow about why so much. She knows her stuff! We then talked about my ferritin being at 13 and she agreed that needed to go up to at least 40-60. She picked out that my red blood cells are larger than normal and said my B-12 may be off. I am still wondering how the hematologist I saw recently told me I was not anemic and had no issues at all (my PCP had referred me after she reviewed my labs). She also checked my feet with a vibrating instrument in which I told her when the vibrating stopped. I thought I did ok but apparently I didn't. She noted there is some nerve damage that could be due to a vit B12 deficiency. Tex, I though of you and everything you have been suggesting.......you are sooooooo good!!! She took interest in my scalloped tongue and asked if I ever get rashes. I almost fell off the examining table. As a matter of fact, I do get facial rashes...... it's amazing how it's all related.Now for the good part- I told her I realized MC causes fatigue and explained my history. She actually knew what CC is and asked if I had been tested for celiac. I told her several times and it was negative. She laughed and rolled her eyes commenting how ridiculous it is that there is the misconception it is black and white with no consideration for intolerances. BLESS HER SOUL!! It was my turn to laugh and roll my eyes telling her my GI doesn't even talk about that. She was pleased I am GF. We talked about the enterolab testing and was receptive to the results. She knew what Entocort is and was able to pronounce all the medications I am taking. I told her about the once a week 3 mg dose I take to control the tummy grumbling and nocturnal D. She got that too and said adrenal testing may not be accurate until I can get off of it. We discussed the carpel tunnel and shoulder pains. It all boiled down to all the extra pains and aches may be disturbing my sleep which creates a vicious cycle.
We talked about my son's liver disease and she agreed that I am most likely a poor converter of T4 to T3. She mentioned there is a small percentage of population who lack an enzyme that aids in the conversion and if that is the case with me AND I have no thyroid to boot- no wonder I feel so crappy.
We talked about the diabetes that runs in my family and kidney tumor/kidney cancer that is also in the family. She looked at me and shook her head. What a mess of bad genes, haha. I mentioned the 23andMe testing and she was interested in that too. She was looking for a gene (can't remember now what it was) because there are new studies linking thyroid cancer and kidney cancer. Not that I need anything more to worry about but I found it very interesting. There are no published studies yet but it is something new they are investigating. It was something related to if impaired kidney function is linked to thyroid issues or the other way around. It reminded me of the MC-thyroid connection. Which comes first, the chicken or the egg?
My PCPs office just called after reviewing her recommendations and I set up a consult for a sleep study in September. I've heard it now from two doctors so I feel I should do my part now and look into it. Too bad it takes so long just for the consult. I am waiting for my endo to agree to or decline the increase in liothyronine. She said she is more than willing to oversee meds but the trip is such a long drive that she wanted to see if my current endo would be receptive to giving it a try. If not, then she would be willing to consult with my PCP who could do it. I didn't ask what would happen if she declined. I will have to see how the insurance company would cover my visits if I have no luck here at home. Hopefully, I wont' have to.
I'm not sure how sleep disorders are treated if it's not apnea but maybe with the combination of that and more T3, I will be back to feeling more like myself again.
