I'll try to make this as short as possible. I live in the U.S. and have not been able to find support on any other site.
-I've struggled with my energy level for as long as I can remember. When I was a teenager I became anemic due to heavy periods and was put on birth control and iron supplements. I remained on the pill until about 6 or 7 years ago. I was working for a holistic clinic and wanted to "cleanse" from the pill.
-I continued to have bouts of depression but this had been a problem for many years. A lot of the time it was situational but I had a low threshold for high stress and tried antidepressants a couple times.
-I finally started seeing a regular doctor about 5 years ago. She told me my blood labs looked fine and gave me antidepressants again. I was going through a tremendous amount of stress. Job stress, death in the family, mentally ill family member, financial stress, relationship stress.
-I left my job after basically becoming non functional and got off the antidepressants. I thought after having left that terrible job I wouldn't need them anymore.
-Still struggling with energy so I changed to a new doctor. She did more labs. I had begun losing hair so I asked about my thyroid. They basically thought I was crazy and sent me home to do a sleep study even though I assured them I sleep great. In fact that was my favorite part of the day!
-I noticed my WBC were low (3.3) so I called the nurse. She told me I could go to a hematologist if I wanted to. I had to ASK about this. They had told me my labs were all normal. I made an appt with the hematologist and also noticed my ferritin was 13 so I asked her about it when I got there. She told me I needed iron supplements for sure and this could be life changing if I get my ferritin up. I never went for a follow up because my insurance didn't cover the appt so I decided to switch to a new general doctor at a more integrative type clinic. I was pretty mad the other place didn't catch my ferritin being that low. It did help to get my iron levels up but I still struggle to keep them up because I have very heavy periods. My hair stopped falling out and I felt better but not 100%.
-New clinic tells me my B12 is a little low (315), my D is a little low (35), and my thyroid is sluggish. Unfortunately I don't have access to any of my thyroid labs right now but I know my TSH was around 2.7, my T3 was around 2.5, T4 around 1 ish. These levels have been pretty consistent. Sometimes my TSH gets a little lower. So they advised me about supplements and gave me naturethroid (1/4 grain). The naturethroid was WAY too stimulating. I had heart palps, racing pulse, crazy euphoria type feelings after a couple weeks. I stopped taking it completely and wondered if I should ever go back to that place again. I did some research and decided to give them another shot. I was still working on my iron, B12, and D at this point.
-I go back and the previous nurse is gone and the new nurse tells me to take high doses of vitamin C and ashwaghanda to support my adrenals. Plus continue with supplements. She says I probably dont need the NDT. So I do this for like 9 months. Then I decide I want to get pregnant. I had started to accept my energy level was never going to be great and I was getting older. I could get myself going on coffee and adrenaline when I needed to. I quit the ashwaghanda bc I was afraid to take herbals while TTC. I had withdrawal symptoms as if I had taken xanax for the last 9 months. But I got through it. I went to a dietitian because I had started to gain weight and couldn't lose it. She put me on a pretty low calorie diet and I crashed and burned and piled on more weight.
-I go back for a follow up. Still struggling with my energy. This previous nurse is gone AGAIN so I'm on a third nurse. She tells me my thyroid still isn't great. At this point my TSH is at a 3.05. She offered NDT and I told her I was afraid bc of what happened last time. She said to take iodine, selenium, and zinc. The amount of iodine she recommended was extremely high and I had not been tested for a deficiency so I didn't do what she said but I did buy a thyroid supplement containing all 3 nutrients in more reasonable amounts. I did this for 6 months and it did nothing for my levels. My weight is still stuck. I have also been to a fertility doctor who makes no mention of my thyroid and performs laparoscopic surgery on me. He finds a couple polyps and a teeny tiny bit of endometriosis but nothing significant. My hormones are pretty good and my husbands sperm is completely normal. I'm coming up on 2 years TTC.
-I go back and she gives me WP thyroid and tells me to take a half of a 1/4 grain every other day and slowly build up to a whole pill everyday over time. I tried to do it and was ok at first but then started getting that shortness of breath, beating heart, anxious, way too stimulated like I'm high on something feeling. I email her and tell her and she tells me to lower my dose and "are you doing anything to support your adrenals?" so at this point I feel like I'm going in circles. After 6 weeks on the NDT my labs are the worst they have ever been?!?! what the heck? My TSH is 3.9 and my T3 and T4 have gone down a little. Makes no sense. I ask her to refer me to an Endocrinologist. I'm really worried this is all dangerous for my ability to get pregnant.
-I like this endocrinologist. He is not against NDT at all for certain people. But he says in my case I am too sensitive to the T3 in the NDT. He gives me levothyroxine and tells me to get off the NDT right away. He says he prefers to use levo for women TTC and for infertility my TSH needs to be below 2. Well for 2 years nobody else has said this. Maddening.
-So I quit the NDT and went straight to 25mcg of levo a week ago. The first couple of days I felt great bc the T3 feeling had gone away but the NDT was kind of still in my system. Then BAM. I feel horrible. No energy, depressed, shedding hair, bloating, gained a couple pounds, craving sweets bc of my energy. Yesterday I started feeling a bit better and thought ok the meds are finally kicking in but today I'm back to feeling very hypothyroid.
So there's my looooooooooong story!! I'm just looking for some insight, support, and wondering if I just need to be patient with the levo. I know it can take time to build up and I may have to adjust my dose. My next follow up is in 2 months.