A few years ago when I weighed 227 pounds I lost a lot of weight. I got down to 141. I was taking levothyroxine at that time. Due to the weight loss my levothyroxine had to be lowered. I couldn't turn off my brain to sleep and I felt very hot...I was actually red! I maintained my weight loss until the pandemic. I slowly gained 50 pounds. I have since lost 19 pounds and I now weigh 171.
Just like before when I lost a lot of weight I've had symptoms of too much levothyroxine. This time it's worse! I have been sick since the middle of November My GP has lowered it twice. From 100mcg to 50 mcg. My blood work is normal but I feel lousy. I have no appetite, food doesn't taste very good anymore. I feel like there is an engine spinning inside my stomach. My heart races. I feel anxious...before I was very depressed now I just feel more disinterested. I have an upset stomach most of the time. I'm losing weight...but I'm trying to do so. It's crazy to count calories and watch macros so that I'm not starving myself.
My TSH and T4 are in normal range but they're low normal. Shouldn't the dosage be based on how I feel?
Anyone else experience this? What should I do?
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Cats416
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My symptoms are from too much levothyroxine. I feel the same way I did when this started. I eat healthy and I take vitamins so I doubt it's caused by that.I didn't say I have hyperthyroidism but my symptoms are similar.
So basically you are like my Dr who will probably tell me that your results are normal so levothyroxine can not possibly be the cause of my symptoms.
I was taking 100 mcg, had symptoms of too much levothyroxine lowered to 75 mcg still had symptoms lowered again to 50 mcg. So no, it's not a starter dose for me.I was hoping to get replies from people who had similar symptoms. You do know that levothyroxine dosage is based on weight? I have lost 19 pounds so yes my dosage was too high
Sounds to me like you have Hashi's. Your need to reduce dose is not due to your losing weight, but losing weight and needing to reduce dose are both the result of a Hashi's 'hyper' swing, when the dying thyroid cells deposit their stocks of hormone into the blood.
You really, really need to get your anitbodies - TPOab and TgAB - tested to find out what's going on. Doctors should do those tests automatically on diagnosis but they don't understand the importance.
Hypo and Hyper symptoms can be surprisingly similar
First step is to get FULL thyroid and vitamin test after being on constant unchanging dose and brand of Levo for at least 8 weeks
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
exactly what vitamin supplements are you taking
When were vitamin levels last tested
Please add results and ranges
Always take Levo on empty stomach and any supplements at least 2 hours away
Vitamin D, magnesium and iron need to be at least 4 hours away
There could be a lot going on here besides the need to reduce hormones. They have been reduced twice now and you are still getting symptoms. You say you have palpatations. Has your ferritin been checked. I recently started to get hypo symptoms, like you I have lost a lot of weight but I stopped losing weight, felt tired all the time and was worried, all hypo symptoms for me and I wanted to increase but was advised to reduce based on my bloods. I am now feeling a bit better and have lost a couple of pounds due to reduction. Your bloods indictate an increase might be needed but also other stuff might be going on such as a hashi swing or low iron. 50mcg is a tiny dose what ever your weight is. You could try reducing it to 25mcg but your might well find yourself feeling even worse.
Dosage is rarely done according to how you feel because the majority of doctors are too scared of hormones to think outside the box. They go strictly by what the 'learnt' in med school - which isn't very much - and med school discourages them from dosing by how the patient feels - or even asking how the patient feels!
As for dosing by weight, that was originally intended as a rough guide for a starter dose for people having an thyroidectomy. The dose was then titrated up or down according to blood tests. It was never intended to be used for people with a slowly failing thyroid due to Hashi's, or other. For one thing, with a hypo patient you cannot start them on a high dose because it would be too much of a shock to the body for someone who has probably had low levels of thyroid hormone for quite some time. You start low and build up slowly. Also, individual hypos all have different needs. Some would need less than their weight indicates, other need a lot more to feel well. It's not an exact science. It's all a question of trial and error. But until doctors are better educated, they'll never be able to do that successfully. Which is why it's so much better and easier to self-treat. You know your body and you know how you feel. And presumably you have the patience to titrate slowly, feeling you way along and listening to your body. Not smashing doses with a sledge hammer or increasing by too much too fast, as a lot of doctors do.
I have ONLY had these symptoms when I have lost a lot of weight. I have been on levothyroxine for many years and that's the only time I've had any side effects. I guess I will discuss it with my PCP. I don't want to see an Endocrinologist because they will focus on my elevated A1C, which I'm trying to lower.
If TSH is low in range your T4 should be higher in range, or vice versa. There is something wrong if both TSH and T4 are both low in range (or both high in range).
I am no expert so my opinion would only be based on my personal experience, which would not be necessarily what would be best for you. I leave that to the real experts on here.
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