Hi there. I am very rare in that I suffered from full thyroid storm in March of 2016 at 37 years old. Thyroid storm has a 90% mortality rate to the point of organ failure. There are medical professionals who know who I am just by this fact alone as my case is in medical journals all over the country.
I had a rapid heartbeat which the doctor has me on metoprolol for (1.5 pills daily) and he also has me on a new a drug called bidil for my congestive heart failure. (1 pill twice a day.) Of course I take my methimazole for my thyroid (10mg a day.) Originally, my heart was as weak as it could be. (For those of you who don’t know, normal heart strength is between 55% and 85%.) As of my last echocardiogram about 2 months ago, I am now at a strong 45%. All of my hard work is paying off, but I’m having issues with side effects that I wasn’t feeling until after I got on the keto diet and I’m supposed to be well past the keto flu stage.
To give you a little bit of a background, I lost about 200 pounds with no pills or surgery. I was on no medications whatsoever. I was a vegan for 7 years and had no issues at all - especially after losing weight. I was on a water pill for high blood pressure for a small stint in my twenties, but once I started exercising, my blood pressure would shoot so low that I had to take myself off of it and never needed it again.
After three months in the hospital from my thyroid storm, I was skin and bones at 190 lb. That doesn’t seem like a small amount, but at 5 foot 8 with all of the fat in my butt and thighs, I was a bag of skin. I had wrinkles all over me and I could not walk without the assistance of a walker because my thyroid had deteriorated all of my muscles. It was a long road. I remember not feeling quite right and my blood pressure being really high, but over time, everything settled in quite nicely. You can look right at me and not tell I ever went through any of that.
The one downside of getting healthier from out the hospital is that you gain your muscle back which means you gain your weight back. I am extremely bottom-heavy so every month, I gained 5 lbs. I could stall it, but only momentarily. This is coming from somebody who is losing weight in their sleep for 10 years with no problems. I went to cardiac rehab when prescribed and then I graduated from there and was able to go to the regular gym. Nothing worked. My muscle definition got better, but I still gain the weight.
I finally maxed out around 300 lbs. To be fair, my own heart doctor says that I don’t look like somebody that weighs that much, but the weight is there and it needs to come down. All the things I was doing before I got sick don’t work at all. In the back of my mind, I knew that I was going to have to start doing low carb because that’s the only thing that was going to work. I am 41 years old now with a thyroid problem. I’m on not one, but two different drugs that are known for suffocating the metabolism in the body. I have researched and researched and researched and research until I’m blue in the face. There is very, very little documentation that is (of a scientific nature) going into people with Graves disease on the keto diet. If somebody has LOW thyroid levels, I have seen a couple of things are, but that’s not my issue. I haven’t found one thing saying that it’s dangerous diet to be on. Trust me when I say I read everything I can get ahold of.
I use the blood Ketone test strips, but I am now seeing that they are pretty much irrelevant. If I rip and run all day, my ketones will be low even though all I did was exercised and burn calories. According to keto Mojo’s paperwork however, it supposed to be higher when you exercise. My blood numbers would be highest at 2 in the morning doing nothing or after eating when it’s supposed to be the lowest. Through research, I found why people talk down about these testing methods. All they do is tell you how many ketones you have floating through your urine, your breath or in my case, your blood. It doesn’t tell you what your liver is using. It doesn’t share with you what’s going on with the actual ketones being burned and used for energy. I spent an ungodly amount of money for the keto test strips, the Bluetooth thingamajig as well as the blood monitor just to find out it’s worthless.
The keto flu was bad for me. I had a panic attack - and I never get those. I got the headaches. Once my sodium was too low and my arms were too heavy to lift and I felt light-headed. Then, I was eating way too much salt. A lot of literature says that one may have to get off of the DIURETICS (which I did) and blood pressure pills may have to be lowered. However, they don’t specify what kind blood pressure pills. They are under the assumption that everybody on the keto diet is an overweight, sloppy person that is gained weight from poor living. I have weight gain due to a metabolism issue. I’m not on medicine because I have high blood pressure. I’m on medicine because my heart beats too fast and I have congestive heart failure. These drugs are used for high blood pressure, but not in my case so I can’t stop taking them. It would be unwise for me to do so anyway. Although it’s rare, there have been times that I have forgotten to take my beta blocker and my heart will be 130 beats a minute resting. I can’t have that. I’ve tried everything from splitting up the pills and taking them throughout the day. One day at work, the next day, I feel like crap. I don’t know if it’s the blood pressure medications doing it, but something is making me feel like complete s*** every so many days.
This morning is a good example. I woke up feeling like a million dollars. I took my 10 mg of thyroid hormone, half of my beta blocker pill and ate my breakfast. I just crashed. I had to lay down immediately. I felt crazy in the head. I felt like something bad was going to happen. Super anxious. Because I had it happen before, I knew not to panic. Last time, I scared the hell out of my parents because they thought I was having another heart attack. I calmed myself down, but I just keep feeling as though I can’t shake whatever this is. I’ll go three days feeling great and then day 4 or 5 I feel horrible. I have isolated the times I take my blood pressure medication because a lot of this feeling I feel is inside of my head and it doesn’t seem like that is it. I could take that pill and feel absolutely nothing, but take it the next day and feel like I’m about to die. I wouldn’t necessarily call it lightheadedness, but I just feel like I’m not right.
My research has suggested that any changes you make to your thyroid medication or other changes takes about six weeks to take effect. I am close to week 6. I am therefore going to get my thyroid blood work done this Monday and will update this blog. I know there are a lot of hormonal things going on in my body because when I first started the keto diet, my period was 2 weeks late. I’m not sexually active so that has nothing to do with it and for heart reasons, I’m not on any birth control or anything like that. I just take three medications right now and all of dealing with my thyroid or the effects my body has suffered because of my thyroid. I had all of the mood swings and all of that stuff. The keto flu was bad for me. I got the rash and everything. As a matter of fact, if I hadn’t done my research to know that all these symptoms were a side effect of the keto diet when I first started it, I would have sent myself to the hospital. Also, I have checked my blood pressure because when I got myself off the water pill in my twenties, my blood pressure would be 59/90 so it was obvious that I no longer needed to be on it. Now when I have these type of symptoms, my blood pressure actually goes up. I have to wait until I’m having a good day and check my blood pressure that day. This is why I don’t think the heart therapy my doctor has me on is the problem. It’s not causing my blood pressure to go too low and even if it was, shouldn’t I have had those symptoms before I started the keto diet? The only thing I haven’t had tested is my thyroid numbers since being on the diet and seeing as I’ve hit the six weeks, I’m going to get it done this Monday.
I started the keto diet on July 31st. It is now September 7th and all of this stuff should have passed. I’m thinking maybe it’s taking longer for me because a lot of things take longer when they have to metabolize through the body because of my thyroid. I don’t know what to differentiate between the early onset of certain symptoms while other symptoms don’t hit at all and different types of medicines that don’t work. The only thing I know that I can no longer use because of my thyroid is Claritin. It just never kicks in. I also started taking slow-release magnesium because I started getting cramps in the middle of the night, but they have seemed to stop. All I know is that I’ll be feeling fine and suddenly, I feel like my head is heavy or I don’t feel right and I need to lay down and it literally feels like my world is going to come to an end until it’s over with. I had issues with not feeling right with my thyroid, but it was never like this. It makes sense though because of keto diet mess with your hormones and two already have a thyroid issue, all of that is going to get mixed into it, but I don’t know how and there’s no literature to tell me what I can do to ease the symptoms. I drink a gallon and a half of water a day. I exercise everyday. I’m not the dirty keto type of girl either. I try to get the majority of my carbs from vegetables. I’ve been eating healthy for 10 years so that’s not my issue. You don’t lose 200 pounds by cheating and I can assure everyone reading this that I am not cheating at all. All of my foods come from Whole Foods and any meat that I buy is hormone-free and all that stuff though I never have liked steak and quite frankly, I don’t even know how to cook it. I try to just stick to sockeye salmon twice a week.
I’m only making it so long and so detailed because if there’s anybody else going through what I’m going through, this is literally the only thing they will find dealing with it. I’ve looked high and low everywhere on various search engines. (If anybody else who knows of any forums that comes close to this, please let me know.) The only thing that I can think of is that my thyroid medication needs to be changed. That’s the only thing I can account for. On other days, I will take my blood pressure medication and feel absolutely no symptoms at all. A tablespoon of coconut oil? No problems at all. Then I wake up this morning, take half of a beta blocker pill, a tablespoon of coconut oil in my thyroid medication and I feel like my world is coming to an end. I will not be able to stay on this diet if I have to continue to deal with this every four days or so. I just want some relief from feeling like this. Anything that you all could possibly tell me would be helpful and my doctors aren’t of any help which is why I do my own homework. My endocrinologist told me if I didn’t like it I could go somewhere else and being on Medicaid (as I am now disabled from my thyroid storm, there is only one other endocrinologist I can go to in the entire count OR neighboring county.)
Not that there’s anything wrong with forums, but I guess doctors are trying to cover themselves and they just won’t give the information so I can no longer use my rule of thumb for leaning on scientific journals and information. Also, doctors have to be careful about giving people natural remedies for things. They don’t want to run the risk. I need to talk to regular everyday folks who are like me that can give me some insight on what I’m dealing with. Will this ever pass? If you don’t with the same thing, how long did it take you? Thank you for all of your help and I’m sorry this is so long.