You know when you feel really terrible and you go to the doctor, and they run some tests and they say nothing is wrong with you? Or they say your lab tests are normal, but you could be ____ and prescribe something that doesn’t help at all and sometimes makes it worse? I do. I’ve been on this merry-go-round for 25 years. This is the story about how I finally figured out what was really going on with the help of my husband and the internet.
I think I was about 21 when I first noticed a bout of extreme fatigue. I remembered my Mom saying she was diagnosed hypothyroid while she was in college with the same symptoms. She encouraged me to go to the doctor. The doctor (a really nice young woman) ran some tests. She said everything was normal. And so nothing changed.
A few years later I was having problems with brain fog, extreme fatigue and feeling nauseated. I visited the University health center and the doctor there (a very nice older man) ran a 6 hour blood sugar test during which every hour I drank orange sugary tasting goo, had my blood drawn and gave a urine sample. He diagnosed me with “relative hypoglycemia”. He said about 3 hours after I eat, my blood sugar drops. Mmmkay. I tried to eat more protein and not go without food for more than 3 hours. And nothing really changed.
A few years after that I noticed my hair was a whole lot thinner than it used to be. I went to yet another doctor (a somewhat full-of-herself woman). She said there was nothing wrong with me and that I should pay more attention to my nutrition. Probably true, but, again – nothing changed.
Another doctor a few years later again said everything was normal, but gave me a depression screening form to fill out. I was thinking “If I’m depressed, it’s because I’m so freaking tired and everyone keeps telling me I’m normal”! She said the screen didn’t reveal any depression issues, but gave me an antidepressant and an anti-anxiety medication to try. The anxiety one gave me the shakes. The antidepressant just turned off my desire to want to resolve anything. Not helpful.
Because my hair was extremely thin now to the point that people were asking me if I had cancer, I went to a dermatologist who did a scalp biopsy. The verdict? “Yes, your hair is getting thinner.” Umm… what? I don’t need a confirmation, I need an answer. Why?!
By the time I had my children I was so zombified I could barely function. I have no idea how I found the willpower to force myself just to move so many times throughout the day. Stuff needed to get done. I didn’t really have any choice.
But I was still tired. Somewhere in there I saw yet another doctor who told me I was normal and treated me a bit like I was crazy. Somewhere in there I got prescribed another anti-depressant by yet another doctor. Not. Helpful.
This year I started to have another bout of super-duper-extreme fatigue. I gained like 20 pounds in a month and I hadn’t changed my eating habits. This time I was positive it was my thyroid. It had to be. I had all the symptoms and almost no hair left. I couldn’t think straight, I was (and still am) tired all of the time. I was irritable, I was gaining weight. Help! Help! Help!
This time when my lab results came back normal, I put my foot down. “Look” I said, “I’ve been dealing with this off and on for 25 years. If it isn’t my thyroid, I need to know what it is. I don’t care how many tests I have to take, or how bizarre they are. I just want to figure this out”. My doctor was pretty great about it. He ordered a stress test, an asthma test, a sleep apnea test. Normal, normal, normal.
Meanwhile, my husband was also convinced it was my thyroid. He sent me an article about it. The article lead me to another article in which I found a list of deficiencies that can cause the thyroid not to work properly (10 Nutrient Deficiencies Every Thyroid Patient Should Have Checked). I marched into my next appointment armed with the list and insisted I be tested for everything on the list. One of the things on the list was iron. My doctor looked at my last labs and said “you’re iron is fine, but we can run it again”. At this point, the “you’re crazy, lady” vibe just rolled off of me. Mostly.
Thankfully, they ran a ferritin test. I didn’t even know what ferritin was. It turns out ferritin is the amount of stored iron in your body. And you need it. Mine was 4.5. Anything under 50 and you can develop insomnia (check). Anything below 40 causes hair loss (check). Anything under 70 and your hair won’t regrow. Ugh! Optimal for women is between 70-90. There is no telling how long my ferritin has been this low.
By the third week after taking my iron and iodine, I noticed a slight improvement. I no longer had to lie down an hour after lunch. My labs 7 weeks later showed that my iodine was now in normal range, and my ferritin was up to 12.3. I expected it to go up faster, but hey – as long as it’s going up!
I have not been checked for the MTHFR gene mutation. I have not been checked for gluten sensitivity which can inhibit iron absorption – but I can tell you that cutting out gluten cuts out a lot of my brain fog. I’m still working on figuring out the precise cause of my iron loss, but at least I have a plan for improvement now.
For anyone happening upon this article, I just want to list the common symptoms of iron deficiency and iodine deficiency. If you have these symptoms and your thyroid is normal (or even if it isn’t), I want you to go get tested for all the things listed in the article above.
Iron deficiency symptoms:
- general fatigue
- pale skin
- shortness of breath (air hunger)
- strange cravings to eat items that aren’t food, such as dirt, ice, or clay
- a tingling or crawling feeling in the legs (restless leg)
- tongue swelling or soreness
- cold hands and feet
- fast or irregular heartbeat
- brittle nails
Iodine deficiency symptoms:
- Lethargy and tiredness, muscular weakness and constant fatigue
- Feeling cold (even on warm days)
- Difficulty concentrating, slowed mental processes and poor memory
- Unusual weight gain
- Thick puffy skin or puffiness of the face
- Hair loss
- Dry Skin
- Weak, slow heart beat
- Enlarged thyroid or goiter
There are also things that inhibit the absorption of iron and iodine. Common iron inhibitors include tea, chocolate and caffeine (but vitamin C aids absorption). Common iodine inhibitors include vegetables in the cruciferous family such as broccoli, cauliflower, Brussels sprouts and kale.
Thankfully, my husband and research on the internet is leading me down the road to recovery. I know I sound dramatic in my title about how this has saved my life, but I suspect un-diagnosed anemia might be why my mother died at 54. Maybe her doctors never ran the right tests. Maybe years of a lack of iron or something else caused a slow decline until her body just couldn’t take it anymore. If I had given up at my “normal” test results again, would I have had a heart attack and died in a few years too? I’m glad I won’t have to find out.