Thyroid rollercoaster - trying to find right dosage and feel normal again
Some background: I'm a 38 yr old female who has been suffering from some form of thyroid issues for at least 7+ years. I originally had graves disease and went through radioactive iodine treatment several years ago to "kill" my thyroid. Since then, I've been struggling to find the right dosage of medicine.
I'm 5ft to 5ft, 1" tall. My ideal weight is 115 lbs. I've slowly been creeping up and am now 130 lbs. I suffer from fatigue, sluggishness, lack of concentration mostly, with a few other symptoms thrown in every now and then. But these three are the worst. And when I say worst, I mean I'm at my freaking wits end with feeling like sh*t all of the time. I've pretty much resigned myself to never feeling "normal" again.
I originally started out of Synthroid. My endo tried higher doses, adding an extra pill on a day or two a week, etc. We've been "experimenting" with doses for several years now. About 2 years ago, we thought we got it right. I was on 50mcg synthroid and added cytomel. I was back down to my "normal" weight of 115 lbs. I felt pretty decent, was sleeping better, etc. Then within the last year or two, the weight has been creeping back up. I'm tired all of the time, with no good reason. Even when I get 8-10 hours of sleep, I still can't seem to make myself get up in the mornings and push snooze several times. At work, I can't concentrate. I lose my train of thought easily. My memory is suffering. Some days, I want to go to my vehicle on my lunch and take a nap. Speaking of naps, I take 2 hour naps every Saturday and Sunday. It's to the point that when I don't get a nap, I feel terrible.
Last week I went to my endo for my 6 month visit. I told him I feel like I'm back at square one, where I was several years ago when I first became hypo after the radioactive iodine treatment. I told him that I feel like I need a higher dose of meds because of the symptoms, how I feel, etc. I got my labs back yesterday. They said I have too much thyroid hormone in my body, so they are taking me off of Synthroid 2 days a week, but adding an additional 5mcg of Cytomel each day for a total of 15 mcg a day (he is hoping that, even though we are removing 2 days a week of Synthroid, that the addition of an extra Cytomel each day will help with the weight, fatigue, etc.).
Here are my labs from this last week:
Test Name Result Units Flag Reference Range Specimen Source
3100 - T-4, Total 8.4 mcg/dL 4.5-12.5
3110 - T-Uptake 30.7 % 25.0-35.0
3120 - TSH 0.11 ?IU/mL Low 0.30-4.50
3130 - T-7 (calc.) 2.58 1.20-4.30
I'm not understanding how, if I have too much hormone, why I am still gaining weight instead of losing it and still fatigued all of the time!! And I exercise on a regular basis, count calories, etc. I'm doing everything I can to help. In the past, when I had too much hormone, I lost weight (too much in fact). I just want to feel normal again. This feels so hopeless. I will say my endo is awesome. He's always willing to try different things. I know a lot of endos scoff at the weight issue, but it IS a big issue! I have a small frame, and this added 15 lbs makes a huge difference in how I look, how I feel, stamina, etc.
First off your DR is NOT testing for the right thing. You are being tested for Total and uptake. They tell you little to nothing.
you NEED to get FREE T4 and FREE T3 tests. Only the free unbound hormone is used by the body. Counting the total amount tells you relatively little as you do not know the amount of free and protein bound (making them useless) hormones you have.
The T4 hormone must be converted into T3. The T4 is a "storage" hormone and is converted to T3 when the body senses it is is needed. Ultimately ONLY the FREE T3 hormone is used by your body's cells.
In the conversion process two things can occur. One is that some people the conversion process is not efficient. That means that less T3 is converted from the T4. So measuring total T4 only is like checking the fuel gauge in your car. It tells you how much is in storage but tells you NOTHING about how much gas is getting to the engine which is really what you want. you really need to know how much T4 is available for converting which is the FREE T4. Then you need to know how much is actually available for your cells use which is the FREE T3. Second conversion issue is that during conversion some amount of T4 is converted into REVERSE T3 and the remainder is converted into Free T3. The reverse T3 is the mirror image of the free T3 but it is biologically inactive, worse yet because it is so similar to free T3 that it will be accepted by your body's cells but since it is inactive it does nothing. But the reverse T3 can plug up or take up a cells receptor rendering it useless and have no vacancy for the truly active free T3 hormone. So some people their body's produce more reverse T3 (RT3) than it should. this then makes the free T3 limited to do all the work it needs to but since the RT3 has plugged up so many receptors that it can't get the work done.
The bottom line is that you really need to get the FREE T3 and FREE T4 tests done to truly know what is going on.
it appears that you may be being treated primarily from a Dr who believes solely in TSH. The Dr see's your low number and now thinks that you are over medicated. This is a classic sign of a Dr who suffers from 'immaculate TSH belief".
What many Dr.s fail to realize is that anyone who is on any thyroid med but specifically one who is on a T3 medication (Cytomel is a T3 med) often the medication overwhelms the pituitary sense and thus suppresses TSH. This then results in a very low TSH value. Regardless of the FACT that you may still be Hypo. However the DR see's this low TSH value and immediately thinks you are going hyper and are over medicated and recommends cutting back your medication. not realizing that you are in fact no hyper. Again this is a classic sign of a Dr who practices immaculate TSH belief.
My recommendation is first to see if your Dr would test for the Free T4 and Free T3. you may want to determine if you have Hashimoto's and test for the two antibodies TPOab and TGab. You may also talk to your Dr about TSH suppression. Ask your Dr if you did not have the TSH value that you do and ONLY went by your clinical symptoms how would you be treated. I bet he would say that you are Hypo. And that very well may be correct. So then why would he reduce your medication???
If the Dr is solidly in the TSH camp and resists testing for the free hormones then you next best bet would be to find another Dr. Dr's who only practice TSH will almost assuredly keep you feeling sick and/or on a roller coaster.
In addition the free hormones and Hashi antibodies. It is also common for people with Hypo to also be low in Vitamin D, B-12 and Iron. so you also may want that tested. Selenilum can also help in the conversion process so testing for Selenium may be a good idea. Note that being somehwere in range is not good enough. Many people find they need to be mid range or more even towards the top of the D3 and B-12 range to feel well.
Also the ranges for the Free hormones are too broad. Many people find that they need to be well into the ranges to feel well. The consensus here seems to be that their FT4 needs to be AT LEAST MIDDLE of the range if not slightly higher AND (that means in addition to) their FT3 to be in the UPPER 1/3 of the range. Again being somewhere near the bottom of the range is not good enough for most people. Everyone is different so you need to find the levels that are right for YOU. However the mid-range and upper 1/3 seems to be a far better target to shoot for.
Only slightly better than the Dr's with immaculate TSH belief are the Dr's who believe in reference range endocrinology. These are Dr's who believe that being "somewhere" in the range, even towards the bottom is good enough. Like I said many, many people here have proven this to be COMPLETELY false.
"...if my T4 levels are off, showing I have too much hormone, shouldn't these hypo symptoms be disappearing instead of getting worse?!"
How do you know your T4 levels are off? You have one test posted that shows total T4, and that certainly is not above range. As flyingfool has pointed out, your doctor should be testing FT3 and FT4 every time you have labs. Treating on the basis of TSH alone will create exactly what you are experiencing...a rollercoaster.
It sounds to me like your doctor is quite inadequate. Your symptoms are still hypo, and he's cutting back on your meds, which will only make you feel worse. Yes, he's increased your T3, and that might help some, but both FT3 and FT4 have to be in balance for you to feel well.
You don't need antibody tests. You've had RAI, so as you said, your thyroid is dead, so antibodies are irrelevent.
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