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Why do I feel worse on medication??
My TSH levels have been going up steadily over the years, but I never really noticed any symptoms. In fact I was able to lose 55 pounds by simple diet changes and minimal exercise. Last summer my TSH reached the point of concern for my PCP and she prescribed Levothyroxine and recommended a specialist. I gained 10 pounds in a month and felt like a train hit me every day. No energy, no sex drive. I stopped taking the meds after 2 months. I noticed an improvement in how I felt and the weight gain stopped. At my follow up visit I said i wasn't taking anything and the doc said my TSH levels were ok, to come back in 3 months. One month later I happened to have lab work and my TSH level had doubled, yet I still felt fine. The doctor now put me on Tirosint. Again I feel extra fatigue, depression and weight gain (no changes in my lifestyle). I've also found that my AML is extremely low for a female my age. I will never conceive naturally. When I express concerns about all of this, the docs keep telling me I have to wait until the drug is in my system. I can't take feeling like this much longer. Why is my body reacting this way?? :(
I hired this book out at my local library (I live in Australia). You can buy this book on Amazon. Type in the book name and author into the Amazon search bar.
Thank you so much for the info! Sorry for the delayed response...I just wish the doctor would take the time and explain all of this to me. I need reassurance that I will get better instead of continually worse.
My most recent labs were: TSH-5.15 FT4-1.31 and TT3-2.24, and I do have a 2mm nodule on the left lobe. I know it is going to take time, but all of the doctors I have talked to look at me like I'm an alien when I tell them I feel like this. That makes me feel worse, like this is not a normal reaction. I will give it time and see what happens. I really appreciate all the info you shared with me! Glad to know there is a community out there where we can help each other. xoxo
My most recent labs were: TSH-5.15 FT4-1.31 and TT3-2.24, and I do have a 2mm nodule on the left lobe. I know it is going to take time, but all of the doctors I have talked to look at me like I'm an alien when I tell them I feel like this. That makes me feel worse, like this is not a normal reaction. I will give it time and see what happens. I really appreciate all the info you shared with me! Glad to know there is a community out there where we can help each other. xoxo
Thank you so much for the info! Sorry for the delayed response...I just wish the doctor would take the time and explain all of this to me. I need reassurance that I will get better instead of continually worse.
My most recent labs were: TSH-5.15 FT4-1.31 and TT3-2.24, and I do have a 2mm nodule on the left lobe. I know it is going to take time, but all of the doctors I have talked to look at me like I'm an alien when I tell them I feel like this. That makes me feel worse, like this is not a normal reaction. I will give it time and see what happens. I really appreciate all the info you shared with me! Glad to know there is a community out there where we can help each other. xoxo
My most recent labs were: TSH-5.15 FT4-1.31 and TT3-2.24, and I do have a 2mm nodule on the left lobe. I know it is going to take time, but all of the doctors I have talked to look at me like I'm an alien when I tell them I feel like this. That makes me feel worse, like this is not a normal reaction. I will give it time and see what happens. I really appreciate all the info you shared with me! Glad to know there is a community out there where we can help each other. xoxo
Thank you so much for the info! Sorry for the delayed response...I just wish the doctor would take the time and explain all of this to me. I need reassurance that I will get better instead of continually worse.
My most recent labs were: TSH-5.15 FT4-1.31 and TT3-2.24, and I do have a 2mm nodule on the left lobe. I know it is going to take time, but all of the doctors I have talked to look at me like I'm an alien when I tell them I feel like this. That makes me feel worse, like this is not a normal reaction. I will give it time and see what happens. I really appreciate all the info you shared with me! Glad to know there is a community out there where we can help each other. xoxo
My most recent labs were: TSH-5.15 FT4-1.31 and TT3-2.24, and I do have a 2mm nodule on the left lobe. I know it is going to take time, but all of the doctors I have talked to look at me like I'm an alien when I tell them I feel like this. That makes me feel worse, like this is not a normal reaction. I will give it time and see what happens. I really appreciate all the info you shared with me! Glad to know there is a community out there where we can help each other. xoxo
The book Running On Empty by Robyn Koumourou (5 years of research and endorsed by Thyroid Australia) has a few pages on symptoms that worsen during treatment. This is just one small paragraph...
"It is not uncommon to start thyroid hormone therapy and find that your symptoms become worse before they get better. When you begin taking thyroxine the areas in the brain that control thyroid hormone production sense the increase in T4 levels within the blood stream. This feedback system will then cause the thyroid glands natural production of thyroid hormones to slow down.
Less natural T4 and T3 will then be produced and released and blood levels may remain stagnant or even decrease temporarily. Less free T3 hormone available to the body will slow down cellular metabolism. They symptoms of hypothyroidism may become worse until an increase in thyroxine is taken or an optimal dose is found."
"It is not uncommon to start thyroid hormone therapy and find that your symptoms become worse before they get better. When you begin taking thyroxine the areas in the brain that control thyroid hormone production sense the increase in T4 levels within the blood stream. This feedback system will then cause the thyroid glands natural production of thyroid hormones to slow down.
Less natural T4 and T3 will then be produced and released and blood levels may remain stagnant or even decrease temporarily. Less free T3 hormone available to the body will slow down cellular metabolism. They symptoms of hypothyroidism may become worse until an increase in thyroxine is taken or an optimal dose is found."
COMMUNITY LEADER
What are the actual results of the thyroid tests you had? Is your doctor only testing TSH? If so, she's going to keep you ill. You need to have the Free T3 and Free T4 tests done, as well. Those are the actual thyroid hormone tests and are much more important than TSH.
Have you actually had "hyper" periods, or did you just feel so bad on the med that you stopped taking it and your levels straightened out on their own? While it's true that antibody levels can fluctuate, you won't necessarily go hyper when they are less, any more than you will go hypo when they're are higher. The antibodies don't cause you to go hyper or hypo; they simply destroy thyroid tissue. I agree that you need to have the antibody tests to determine if you have Hashimoto's.
You should also have a thyroid ultra sound done, to determine whether or not you have nodules. Sometimes, a nodule can produce hormones independently of the thyroid, which could also account for TSH fluctuations. Again, you need the FT3 and FT4 tests.
As flyingfool noted, it's very common to feel worse when starting on thyroid med, or for new symptoms to appear, but often doctors try to start patients on a therapeutic dose, right off the bat, and it's too high. It's usually much better to start at a lower dose and work up slowly; that way your body has a chance to adjust to smaller amounts of hormones as you go along.
Adequate thyroid hormones are essential for the growth and development of a fetus, so do be sure you're getting adequately tested and treated before you try to get pregnant. Too low thyroid hormones can prevent one from becoming pregnant.
If your doctor refuses to test Free T3 and Free T4, find another one asap.
Have you actually had "hyper" periods, or did you just feel so bad on the med that you stopped taking it and your levels straightened out on their own? While it's true that antibody levels can fluctuate, you won't necessarily go hyper when they are less, any more than you will go hypo when they're are higher. The antibodies don't cause you to go hyper or hypo; they simply destroy thyroid tissue. I agree that you need to have the antibody tests to determine if you have Hashimoto's.
You should also have a thyroid ultra sound done, to determine whether or not you have nodules. Sometimes, a nodule can produce hormones independently of the thyroid, which could also account for TSH fluctuations. Again, you need the FT3 and FT4 tests.
As flyingfool noted, it's very common to feel worse when starting on thyroid med, or for new symptoms to appear, but often doctors try to start patients on a therapeutic dose, right off the bat, and it's too high. It's usually much better to start at a lower dose and work up slowly; that way your body has a chance to adjust to smaller amounts of hormones as you go along.
Adequate thyroid hormones are essential for the growth and development of a fetus, so do be sure you're getting adequately tested and treated before you try to get pregnant. Too low thyroid hormones can prevent one from becoming pregnant.
If your doctor refuses to test Free T3 and Free T4, find another one asap.
It is actually quite common for a person starting thyroid replacement to initially feel WORSE and MORE symptomatic when first staring on medication.
This is because your body was essentially putting into place emergency procedures because it sensed the lack of thyroid and tried its best to make up for that deficiencey. NOW all of a sudden you introduce thyroid. The body now has to readjust itself to this new condition of actually having some thyroid hormone. So the body is sort of in "shock" while making this transition.
And when you "shock" hormones, your body reacts shockingly and does funny things. Hormones are extremely powerful little buggers. So when initially starting adding in hormone it really sends a ripple effect throughout the whole body.
So you have to endure this transition if at all possible. Clearly you ra Hypo at least at times as all your symptoms are consistent with being hypo (low thyroid)
Also I would offer that I would speculate a guess that you have Hashimotos's. This is an autoimmune condition that is the #1 cause for being Hyupo in the modern world. And in the initial stages of Hashi's it is not uncommon to swing from hypo (low thyroid) to Hyper (high thyroid). Or in your case possibly a normal condition into a low thyroid condition. This would explain why you feel OK sometimes and then a short time later feel terrible.
Hashimotos' can be tested by a blood test. You look for elevated number of one or both of two differen antibobies. The tests for these are; TPOab and TGab. If one or the other or both of them are elevated, this would be a positive result meaning that you have Hashimoto's.
Hashimoto's is a condition where your body for whatever reason "sees" your thyroid gland as a foreign invader. And like any good immune system it is designed to destroy foreign invaders into your body. As a result, your own immune system is slowly attacking your thyroid gland and steadily over time reducing the thyroid glands ability to produce thyroid hormone.
So the swing between hypo an hyper can reasonably be explained by the swing in the waxing and waning of the numbers of the antibodies that are attacking the thyroid.
As stated Hashi's is the most common cause for being Hypo in the USA and other modern nations. The treatment is really no different than being Hypo for any other reason. And that is you need the addition of oral thyroid medication to supply the thyroid hormone that your natural thyroid gland can not supply. The only real difference in knowing whether or not you have Hshhi's is that people with Hashi's know that over time they will need more and more medication to make up for the progression of the destruction of your thyroid glands ability to produce thyroid on its own. So this means more disipline on your part to be tested more regularly so that you won't have to wait to fel terrible in order to go to the Dr and get an increase in your medication dosage. You may be able to catch it early and only have minor symptoms etc and keep up with it.
Hope this helps.
This is because your body was essentially putting into place emergency procedures because it sensed the lack of thyroid and tried its best to make up for that deficiencey. NOW all of a sudden you introduce thyroid. The body now has to readjust itself to this new condition of actually having some thyroid hormone. So the body is sort of in "shock" while making this transition.
And when you "shock" hormones, your body reacts shockingly and does funny things. Hormones are extremely powerful little buggers. So when initially starting adding in hormone it really sends a ripple effect throughout the whole body.
So you have to endure this transition if at all possible. Clearly you ra Hypo at least at times as all your symptoms are consistent with being hypo (low thyroid)
Also I would offer that I would speculate a guess that you have Hashimotos's. This is an autoimmune condition that is the #1 cause for being Hyupo in the modern world. And in the initial stages of Hashi's it is not uncommon to swing from hypo (low thyroid) to Hyper (high thyroid). Or in your case possibly a normal condition into a low thyroid condition. This would explain why you feel OK sometimes and then a short time later feel terrible.
Hashimotos' can be tested by a blood test. You look for elevated number of one or both of two differen antibobies. The tests for these are; TPOab and TGab. If one or the other or both of them are elevated, this would be a positive result meaning that you have Hashimoto's.
Hashimoto's is a condition where your body for whatever reason "sees" your thyroid gland as a foreign invader. And like any good immune system it is designed to destroy foreign invaders into your body. As a result, your own immune system is slowly attacking your thyroid gland and steadily over time reducing the thyroid glands ability to produce thyroid hormone.
So the swing between hypo an hyper can reasonably be explained by the swing in the waxing and waning of the numbers of the antibodies that are attacking the thyroid.
As stated Hashi's is the most common cause for being Hypo in the USA and other modern nations. The treatment is really no different than being Hypo for any other reason. And that is you need the addition of oral thyroid medication to supply the thyroid hormone that your natural thyroid gland can not supply. The only real difference in knowing whether or not you have Hshhi's is that people with Hashi's know that over time they will need more and more medication to make up for the progression of the destruction of your thyroid glands ability to produce thyroid on its own. So this means more disipline on your part to be tested more regularly so that you won't have to wait to fel terrible in order to go to the Dr and get an increase in your medication dosage. You may be able to catch it early and only have minor symptoms etc and keep up with it.
Hope this helps.
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