Hypothyroid but have stopped taking meds

[butterfly8537]

Hi I was originally on an increased amount of thyroid medication of 125mcg of Levothyroxine per day but I stopped taking it 3 weeks ago. Really it was for a combination of things:

Firstly it's because I'm not a textbook hypothyroid sufferer - I weigh 8 stone, wear size 6 clothes (US size 2) and have a BMI of 19.5 (healthy range). I guess I don't see what difference stopping the thyroid medication would do if I wasn't typically overweight like the majority of hypothyroid sufferers are.

Also my last thyroid function test came back normal. I was originally on 75mcg per day and that was when I took it consistently and it was within the high end of the normal range. Surely now it'll stay like that?

And thirdly it's also because I feel like a hypochondriac with having to take the meds but all my family say there's nothing wrong with me and don't accept I have this illness. Also my last doctor's surgery misdiagnosed me despite having a high TSH of 5.2 (normal range 0.27-4.2) and when I complained about this they simply stated there was nothing more they could have done to help me.

I just feel like such a fraud with this illness because I don't look hypothyroid and when I say I have hypothyroidism people just can't believe it.

It might seem like I have no reason to quit taking them and at times I do think that but when I think back about what my family says and the trouble I had in the past it makes me quit taking them. :(

Thanks

Thanks

[goolarra]

"Also my last thyroid function test came back normal. I was originally on 75mcg per day and that was when I took it consistently and it was within the high end of the normal range. Surely now it'll stay like that?"

Very doubtful, unless you were really misdiagnosed and you have no thyroid problem.  Your last thyroid test was a MEDICATED test.  You were on 125 mcg of levo.  Take away that 125 mcg, and your FT3 and FT4 levels will begin to drop, and your TSH will rise.

Say you were a diabetic on insulin (or hypothyroid on levo).  You take your meds every day and test when you should.  One day you say to yourself "My tests are always normal, so I think I can stop taking my insulin (levo)."  Well, it usually happens a lot faster for the diabetic, but the result is the same.  Medicated on insulin or levo, your tests reflect the fact that you are taking meds.  Take away the meds, and you are going to crash.

You need to educate your family.  Perhaps you could suggest they do some reading on this forum.

[ahmee]

Many of us hypothyroid sufferers are not, and never have been, overweight. The doctor who diagnosed me via bloodwork looked and me and said, "well, you're certainly not fat! Hmmm..." But indeed my TSH was high and Free T3 and Free T4 were low. I had many symptoms because my body was not, and never will again, produce enough thyroid hormone to keep my body functioning as it should.

Please look at the following thread and read the 12 last posts at the bottom. You will see some of the grave consequences of not taking one's medication: http://www.medhelp.org/posts/Thyroid-Disorders/What-happens-if-I-quit-taking-levothyroxine/show/478065

As you can see, you can go into a coma and even die if you do not take your medicine. Your body needs thyroid hormone for all bodily processes. Hypothyroidism does not just "go away" on its own. There is no cure. You need to take medication for life. Make no mistake about this. It does not matter if you "look" hypothyroid or not; you are hypothyroid if your hormone levels are low.

With that being said, we don't know your actual hormone levels from just the TSH value. Please post your most recent lab results so we can give you further advice. The tests we are most interested in are Free T3, Free T4, and TSH. In addition, were you tested for Hashimoto's? This is the autoimmune disease that causes hypothyroidism in most people. The tests for that are TPOAb and TgAb.

4-6 weeks after stopping your medication your symptoms will return. Your thyroid will not just "go back to normal". Weight gain was not a symptom for you, but were any of these other symptoms?:

hair loss, swollen neck (swollen thyroid/goiter), edema, heart palpitations, brain fog, depression, mania, sensitivity to heat and cold, chronic fatigue, panic attacks, constipation, heavy periods, migraines, muscle weakness, joint stiffness, slow heart rate, high cholesterol, hypoglycemia, memory loss, vision problems, infertility, swollen tongue (tongue scalloping)