Jenn - I get where you're coming from - you have several major issues to contend with and trying to work them all out, won't be that easy.
The first issue is that you're in Canada and they're even much more focused on TSH than doctors in the U.S. are. Because of your medical system, they have very strict guidelines by which to go. We've had some members who have gone private for thyroid treatment, if that's an option for you.
The second issue is that you gained the weight all at once and when that happens, it seems much harder to lose it. I "was" like you - could eat 2000 calories/day and not gain weight, or if I did gain a few pounds, being a bit more active or dropping a few calories/day from my diet would allow me to drop back to a normal weight, which was somewhere between 100 and 105 lbs. When my thyroid stopped working, I gained 30 lbs within a month - talk about a shock to the system. As if that wasn't bad enough, my doctor refused to give me an adequate dose of thyroid hormones, so over a period of time, I gradually gained another 25-30 lbs. I finally got a decent dosage and managed to lose 30 lbs. 2 yrs ago, I went through a very stressful time, with several deaths in the family, etc. I should have had increased dosage during that time, but my doctor wouldn't give it to me - subsequently, I started gaining back the weight I'd managed to lose. In addition, my hair started falling out, I got huge bags under my eyes, my fingernails began peeling/splitting and got deep ridges - In other words, I was a mess.
I was referred to an endo who tried to control my TSH only - he refused to even consider my actual thyroid hormones. He actually made things worse. I saw him a couple of times and he refused to budge on a higher dose because of my TSH level and I continued to gain weight. In the meantime, a nodule that I've had for years started growing and an ultrasound came back with the nodule being moderately suspicious for cancer, but it wasn't large enough for biopsy. The endo wanted me on desiccated hormones, which I was happy to take - I just needed a higher dosage and actually got worse than I'd been before seeing him.
I ended up going back to my pcp for treatment. It didn't take him long to realize that I was becoming very ill. At my request, the pcp put me back on the Levoxyl (T4), I'd been taking prior to seeing the endo. He also added 10 mcg of T3 (liothyronine, which is generic for Cytomel).
I'm disappointed to say that I haven't lost the weight I gained yet, but my hair (and eyebrows) are growing again, my fingernails have become stronger and almost lost the ridges and the bags under my eyes have smoothed out. Having those symptoms reduced tells me that I'm back on track as far as thyroid hormone is concerned. Best of all, the moderately suspicious nodule has gotten smaller since my TSH went down. Actually, I'm not sure if that's "why" it went down, but it seems like more than "coincidence" that when my TSH went up, the nodule grew and when my TSH went down, it shrunk.
We do have to take into consideration, other hormones, such as cortisol (stress hormone) and insulin, which is, often, referred to as "the fat storage hormone".
Although you think your BMR and the number of calories you take in are outrageously low (they are) - that's what your metabolism is actually doing right now, indicating that your thyroid hormones are too low. My doctor wants me on a 1200 calorie diet but then I'm a lot older than you are.
It can, definitely, feel like you're between a rock and a hard place when you know things aren't right and you also know that your doctor isn't going to budge on the TSH issue. The good thing is that SOME doctors - even Canadian - will actually listen to the patient if you can convince them that TSH isn't that important. The more knowledge you have of the way the thyroid works, the more likely you'll be able to convince your doctor to pay MORE attention to the actual FT4/FT3 than they do the TSH.
If you haven't, already, I'd suggest you check out a paper that gimel wrote, along with an endo regarding thyroid specifics and how hypothyroidism should be treated. I'm adding a link to the article - it will give you a lot of information to discuss with your doctor. You can even print parts of it to take along and have your doctor read.
https://thyroiduk.org/further-reading/managing-the-total-thyroid-process/
Sorry. I misstated this.
(which of
course raises TSH levels).
The higher FT4 and FT3 levels right after taking thyroid med causes TSH to decrease, and stay that way for most of the day. So you get a false low TSH result.
Your doctors don't understand that when taking thyroid med, TSH cannot reliably indicate a patient's thyroid status. First, when taking thyroid med, it spikes within 3=4 hours and thus will tend to suppress TSH, which then will last for most of the day. In addition, as you take thyroid med, it automatically reduces TSH, when then reduces output of natural thyroid hormone from the gland. So taking thyroid med will not raise your original levels until the dose is enough to essentially suppress TSH. After that, further increases in med dosage will start to raise your FT4 and FT3 levels. Another factor is that even the AACE/ATA Guidelines for Hypothyroidism state that thyroid med should be delayed until after the blood draw for blood tests, to avoid false high results (which of
course raises TSH levels).
Another thing to understand is the the ranges for FT4 and FT3 are too broad and skewed to the low end. This is because labs have no way of identifying and excluding from their database used to establish ranges hypothyroid patients with TSH within range, or hypothyroid patients being treated. Your last listed test results were very low, even to those broad ranges.
You are going to need a good thyroid doctor tht will treat clinically, based on symptoms along with FT4 and FT3. You need to get your FT4 and fT3 to at least mid-range, or as required to relieve symptoms. Don't know if that is possible in Canada or not. With your current doctors, you could try giving them a copy of my paper, that explains all this.
https://thyroiduk.org/further-reading/managing-the-total-thyroid-process/
What were your FT4 and FT3 and TSH levels when first diagnosed?
I just wanted to supplement all the good info previously given you here. Since weight is your big concern, let me give you a few facts. Most doctors don't recognize/accept that thyroid can be so detrimental to our metabolism. They tend to blame all weight problems on lack of exercise and excessive eating. Wrong in many cases. From various formulas for estimating the effect of metabolism, you can find that for a woman, reduction in metabolism of just 200 calories per day will cause a weight gain of about 44 pounds, over time. I think you will also like reading the following link. In it they state based on their experience, that with weight loss, hormone balance is the real master of your results – no matter how much dieting or exercise you do. For example low thyroid levels can cost you between 300 and 900 calories per day. Compare that with the fact that an average workout burns 500 calories and you can see the difficulties. And byu the way, if you want to know the effect of a reduction in metabolic rate of 300 , or 900 calories per day, just divide by 4.3 and that gives you the equivalent pounds gained over time. Also, as you gain weight, leptin resistsance is a common side effect and that causes your appetite to increase, and less fat to be burned.
https://www.system10weightloss.com/hormones-rule-your-world/?print=1
It is very important for you to find a good thyroid doctor that will treat you with increases in T4 and T3 med as needed to relieve hypothyroid symptoms. Trying to treat a hypo patient bases on TSH is absolutely wrong. Even trying to adjust FT4 and FT3 levels to some arbitrary target doesn't necessarily work either since everyone can have different levels at which they feel normal and have normal metabolism.
It's not always a matter of the number of calories/day that you eat. It matters just as much, of what those calories consist. If you're eating 1500 calories of sandwiches doused with mayonnaise and other high calorie condiments, losing weight will be very difficult. If you're eating 1500 calories of fish, vegetables, whole grains, etc, you should be able to lose weight. You can also try switching up your calories rather than staying right at 1500 all the time. Also, it's good to switch up your exercise as the body gets used to doing certain things and they're no longer a challenge.
That said, we also need to have normal metabolism in order for our body to react in a normal manner. Your thyroid hormone levels (Free T4 and Free T3) are both very low in their ranges and you could, probably, benefit greatly with a dosage increase.
It's unfortunate that doctors don't realize that TSH is merely an indicator of thyroid status and once we've become hypo and are on medication, it's really quite useless. My TSH has been < 0.001 for the past 15 yrs. I've had doctors that keep trying to adjust my medication in order to bring up TSH but I end up getting very ill and have to find a doctor who will increase my levels.
Hashimoto's is an autoimmune condition that gradually destroys the thyroid. Once the thyroid is completely destroyed and can no longer produce any hormones at all, your dosage should level out. Until then, you may have to adjust medication dosage to keep up with the destruction of your thyroid.
Have you had ferritin, Vitamin D and B-12 tested? Ferritin and viatmin D are necessary for proper metabolism of thyroid hormones. Vitamin B-12 is necessary for proper nerve function and red blood cell production. Red blood cells carry oxygen throughout the body. B-12 is needed for energy production.
Yes, I'm pretty sure it was fat. It was very noticeable (mostly belly fat and around my hips) and the reason why I cut my caloric intake down to 1500 calories (initially 1600 and then 1500 when it wasn't getting better). My cloths don't fit the same. Some barely fit anymore. I weigh 10 lbs more than my average (checked on 2 different scales, the first one was 13 lbs more and the second one 9-10). As far as my workouts go, I haven't made any drastic changes. I've been working out for years. I don't think my workouts ever made me gain weight.
I know my test results are not ideal, but I can't increase the dose rn. I'm on a pretty high dose and live in Canada (regulations here on TSH are very strict, so my dose can't be upped until my TSH is normal, even if my FT4 is low and FT3 suboptimal). Also, other than the weight gain, blood pressure reading and sleepiness, I have no other thyroid symptoms (better than most other times I was hypo). I'm also hesitant about increasing the dose because it never seems to end. My dose is upped and then my thyroid function drops 9 months later. Then my dose is upped, everything is good for 9 months and then my levels drop again. This has been going on for 3 years now (I was put on thyroid medication 3 years ago). I can't keep upping my dose forever. Can I?
I discussed this with a doctor (at a walk in clinic) and she told me to keep track of my weight. If it keeps going up go get blood drawn again.
As far as calories go, I don't have a choice. If I eat more I'll gain even more weight (gaining 10 lbs in 2 months is insanely unhealthy as is). It's not that I want to do this. I used CRON meter to calculate my BMR and it seems to be around 1000 calories (which is insanely low). It was never like this before I was hypo (3+ years ago). I used to struggle to gain weight.
Hi Jenn1302,
The short version: Are you sure this is fat gain? It could be your body is retaining extra water, which can cause high blood pressure.
The longer version:
My first thought would be: is this weight gain fat gain? Or is it water weight? My water weight can fluctuate dramatically throughout the course of the day (often 5-6 pounds from morning to night). My weight is very strongly influenced by electrolyte levels and hydration. I run outside most days, and in the summer, I struggle to make sure I'm hydrated and have consumed enough electrolytes. If I consume too few electrolytes after a sweaty run, I wake up bloated and weight is up. Same thing happens if I consume too much salt. High humidity also causes my weight to go up. For that reason, I spend many summer months with my weight up a few pounds, but it's probably not fat gain.
My second thought is if you are working out, muscle is denser than fat tissue, and muscle inflammation can cause some water retention/weight to go up. When I've lifted weights enough to cause delayed onset muscle soreness (DOMS), my weight almost always goes up about 2 pounds.
Are your clothes still fitting? Do you look like you gained 10 pounds of fat? The scale measures your weight, your weight is made up of all the parts of you, including how much water is in your body. Most people see weight loss and weight gain and think in terms of body fat only, but it is much more complicated. I weigh myself everyday (a side effect of having accidentally gained 40 pounds due to hypothyroidism, now I like to just keep track), and in addition to electrolytes and whether I'm dehydrated, I've noticed my weight goes up under the following conditions: monthly hormone cycling, consuming pasta, consuming soup (high salt), muscle inflammation, taking ibuprofen (probably related to the muscle inflammation), consuming alcohol. I'm pretty sure there are many things I'm forgetting, but it's much more complicated than fat loss/gain. (My weight today is down 1.4 pounds from yesterday - that's because I am stressed out in general about a potential new job and moving, and I ate less food than normal yesterday, so there is less in my digestive tract this morning, and possibly a decrease in muscle inflammation from yesterday because I've had DOMS the last two mornings but not today. I'm pretty sure all 1.4 pounds down is water weight.)
It does look like your FT3 and FT4 are much too low. Would your doctor increase your thyroid hormone dosage? I don't think high blood pressure would cause a fast weight gain (unless the same thing causing the high blood pressure is causing you to retain fluids, putting more pressure on your blood vessels). I do think retaining fluids can cause high blood pressure though (this is what happens with salt, I think, in people with high blood pressure salt can make it worse).
So - is hypothyroidism causing weight gain? I don't know - I can't tell whether it is water weight or fat or muscle. When I had hypothyroidism, I tended to retain much more water throughout the month with my monthly hormonal cycles than I do now. That doesn't mean that you shouldn't try to get the hypothyroidism treated, if FT3 and FT4 are that low in the range and you have excessive sleepiness.
Is the high blood pressure caused by the hypothyroidism? I don't know. That might be independent of the hypothyroidism, but might be related to the weight gain. Definitely something I would discuss with a medical professional. The high blood pressure and weight gain may be related.
Should you eat less? Eating such low calories while working out has never worked for me. I run about 7-10 hours every week, and lift weights a couple times a week, and now I swim on top of that. (I feel my best when I'm very active throughout the week and I'm eating a lot of food to sustain that activity.) I tried restricting my calories to about 2,400 per day at the beginning of the year to lose the 13 pounds I gained last year, and lost I zero weight. (I also focused on staying healthy enough to run, lift weights, and swim, which meant I didn't want to undereat by that much.) I've put on a ton of muscle though, and gave up losing the weight because I'm happy with my body composition now.
If you are eating too few calories and trying to work out, I'd imagine excessive sleepiness could be caused by too few calories. Working out at a calorie deficit can cause injuries if you're undereating significantly, and can cause fatigue and tiredness which might get misconstrued as hypothyroidism symptoms (it could also be hypothyroidism, we're all different, I'm just thinking about how I feel when I restrict calories too much and try to run without enough fuel).