Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Ok, so we thought I might have Addisons disease since I had all the symptoms and it didn't make sense for me with Hashimotos. Well, I have a really great endo. She retested everything including reverse T3. and it didn't show up Addison's. It still showed up that I have Hashimotos but my reverse T3 is off so she put me on a very low dose of T3 hormone every other day. Ok my most dominent symptom is chronic diarrhea. They said that this could possibly help or could possibly make it worse. I have taken my second dose this morning, so far no change, does it take longer to see results? I want this issue to go away. So I am praying that this is my problem and it will go away soon, but I am having doubts.
My GI specialist prescribed me elavil for the stomach issues. I haven't started that one yet, because I am very nervous of the side effects and I don't want to have to take that one if I don't have to. but so far with my issues this morning I am seriously thinking of starting it, if it will help me. I have serious issues everyday or every other day, depending on how much immodium I have to take to get it to stop.
So this is how I know I have a good endo, she listened, she was very pleased to test the T3, which I have heard on here that doctors are very reluctant. When it came back, she initiated the T3 and told me that it would be pointless to give me T4 hormones because they aren't converting right so it wouldn't do anything. but since those are high, I'm wandering if she missed something, I read somewhere about someone taking both? Is that what I need to do? Should I just start taking the elavil with it to get my symptoms down?
Also, she told me that they only assume I have hashimotos because antibodies only show that you have an autoimmune, not detailed which one, duh. But since I have a hypothyroid marker in my blood work, they assume hashimotos, the same if you have hyperthyroid. Which is confusing to me because first they tell me that I have some hyperthyroid stuff going on but that I'm hypothyroid. I am soooo lost. I'm thinking about calling back again to ask whats going on and if this will take longer to see results.
If anyone has similar stuff please give me advice, I am out of my elliment and not sure where to take it from here. I do have a nodule that they are going to biopsy, I'm hoping it comes back that they need to take it out alltogether, so they can regulate it properly, but I know it won't.
Don't get me wrong, I am sooo happy that someone finally found out what's really going on, but then I feel like they are lost on how to fix it. She told me I was her first case like this, normally they don't test the reverse T3 and they don't normally deal with T3 hormones, she claims it's very rare, I always knew I was the odd one out, but I think that if these doctors would test it as routine as it should be, it would be way more common.
Oh and why don't they just give an autoimmune suppresant? I think I am going to ask her that. It would only make sense I would think.
My GI specialist prescribed me elavil for the stomach issues. I haven't started that one yet, because I am very nervous of the side effects and I don't want to have to take that one if I don't have to. but so far with my issues this morning I am seriously thinking of starting it, if it will help me. I have serious issues everyday or every other day, depending on how much immodium I have to take to get it to stop.
So this is how I know I have a good endo, she listened, she was very pleased to test the T3, which I have heard on here that doctors are very reluctant. When it came back, she initiated the T3 and told me that it would be pointless to give me T4 hormones because they aren't converting right so it wouldn't do anything. but since those are high, I'm wandering if she missed something, I read somewhere about someone taking both? Is that what I need to do? Should I just start taking the elavil with it to get my symptoms down?
Also, she told me that they only assume I have hashimotos because antibodies only show that you have an autoimmune, not detailed which one, duh. But since I have a hypothyroid marker in my blood work, they assume hashimotos, the same if you have hyperthyroid. Which is confusing to me because first they tell me that I have some hyperthyroid stuff going on but that I'm hypothyroid. I am soooo lost. I'm thinking about calling back again to ask whats going on and if this will take longer to see results.
If anyone has similar stuff please give me advice, I am out of my elliment and not sure where to take it from here. I do have a nodule that they are going to biopsy, I'm hoping it comes back that they need to take it out alltogether, so they can regulate it properly, but I know it won't.
Don't get me wrong, I am sooo happy that someone finally found out what's really going on, but then I feel like they are lost on how to fix it. She told me I was her first case like this, normally they don't test the reverse T3 and they don't normally deal with T3 hormones, she claims it's very rare, I always knew I was the odd one out, but I think that if these doctors would test it as routine as it should be, it would be way more common.
Oh and why don't they just give an autoimmune suppresant? I think I am going to ask her that. It would only make sense I would think.
I hope your thyroid biopsy comes out negative. My results were positive for thyroid cancer. They removed my thyroid just over a year ago and all was well for 2 weeks. Then hypo symptoms hit me hard. Extremely dry gritty eyes (so bad it would wake me up at night). Terrible constipation (for the first time in all my 55 years). And severe CRS (can't remember sh*t). I couldn't even remember how to get to the doctor's office, though I'd been there many times. And for the rest of my life I have to take thyroid hormones. T3 isn't bad, but T4 is a major pain in the rear. You have to take it on an empty stomach, and you can't eat or take any other meds for an hour, and no calcium from 4 hours before to 4 hours after you take it. My endo said her patients set their alarm for 3:00 am to get up and take it. It took 8 months for me to begin to feel alive again.
I hope things turn out better for you than they did for me.
Big hugs.
I don't understand why your doctor is having you take T3 every other day.
T3 meds have a 6-8 hour half-life and many of us taking T3 divide the dose into at least two per day.
You mustn't be feeling too good with only having T3 in your system for 12-16 hours tops every other day.
Is there any chance you could do more even dosing? I strongly suspect it will make a difference in how you feel.
If you'd like to share your most recent results (including ranges since they vary from lab to lab), we can help you interpret them.
Hopefully, your doctor is running the FREE T4 and FREE T3.
She basically told me that she wanted me to take the T3 at a low dose (5) every other day because they don't know enough about the T3 and they don't know what it will do to me. She is nervous that if she gives me any more than that right away, it will push me into hyperthyroidism and they don't want to do that. She told me face to face that I am the first case she has had with this issue, so she doesn't know what she is doing. Which makes me feel less confident in them, but she is willing to listen and she is very nice to me and she is willing to try to help me and figure it out. So that makes me feel better. I just can't wait till they call so I can ask them about more options, I was wandering about armour since it had both, or if my T3 with naturally fix my T4 issue. I'm hoping to get the biopsy done this week, if they call me soon, so that I will be seeing her in 2 weeks vs the 5. I have noticed the days that I do take it, I have more energy, but that is it, no other difference, so I was also going to ask how long it took to notice anything, but she probably wouldn't even know.
Based upon my research, I decided to divide the dose into 2/day
Based upon the advice of thyroid forum members, I started out with 2.5mcg/day divided into two doses.
You might want to consider getting a pill cutter and dividing that tab into quarters.....and take 2.5mcg/day divided into two doses.
This is, in essence, the same dose your doctor prescribed but, it will be much easier on your body.....you should have minimal hyper symptoms after the dose.....and your levels will be more even.
But, if you've already taken 5mcg and are faring well with it, there's no reason why you can't take that same dose each day....
It does take 2-3 days to feel the effects of a new T3 dose and 2 wks. for the FreeT3 level to reflect the addition/increase of T3.
You might want to consider getting a pill cutter and dividing that tab into quarters.....and take 2.5mcg/day divided into two doses.
This is, in essence, the same dose your doctor prescribed but, it will be much easier on your body.....you should have minimal hyper symptoms after the dose.....and your levels will be more even.
People that have trouble converting T4 into T3 can do well with a med like Armour. Some people have had trouble adjusting to Armour's new formulation.
IMHO, you need to look at your labs to really see what's going on - sometimes, doctors just don't interpret them properly (although it does sound like your doctor has some idea but, it certainly doesn't hurt for you to understand what's going on as well)
And, for whatever it's worth, it's not uncommon for people with less-than-optimal thyroid hormone levels to have IBS-type symptoms. This is yet another reason to take a peek at your labs.
Most people need both their FreeT4 and FreeT3 levels to be in the upper half of the range if they are going to be symptom-free.
If you learn what you need to know to feel well while having thyroid disease, the fact that your doctor is willing to work with you is a big plus. Many doctors won't do this.
Your labs will tell you whether or not you should be taking T4 or T3 or both.
For whatever it's worth, none of the 3 endos I saw had any idea how to treat thyroid disease. Endos seem to be quite busy taking care of diabetics and it just doesn't seem like they remember what they learned about the thyroid in medical school and/or kept up with things.
My current thyroid doctor, an internist, is quite thyroid-savvy. However, I was the one that identified my optimal levels and pushed for dose adjustments.
We reap what we sow as far as thyroid disease is concerned.
Have you had any abdominal surgery?
Good luck dear.
My doctor still hasn't called me, which I am very frusterated with.
Also, ok so the last few days I have been waking up like at 4am tossing and turning not being able to go back to sleep, and then at 9am I get this "I need to be doing something physical" feeling. It's so weird, I am totally exhausted, but I feel like I need to be moving doing something. Then I crash and totally tired and crabby by 1pm. Is this from my med, this is totally new for me, it's sooo hard. Like this morning, woke up with a migraine (still have it) my back hurts, my jaw is tight, my legs are giddery, but I felt the need to do something really physical, so I cleaned half my carpets, I ache now, my body is tight and shaky and my head is killing me. I forced myself to stop so I can rest, but the urge is not going away. I can't beleive this is what is going on for just one pill everyother day. What do I do. I told my husband we need a pill cutter, I'm hoping that might help.
Also, ok so the last few days I have been waking up like at 4am tossing and turning not being able to go back to sleep, and then at 9am I get this "I need to be doing something physical" feeling. It's so weird, I am totally exhausted, but I feel like I need to be moving doing something. Then I crash and totally tired and crabby by 1pm. Is this from my med, this is totally new for me, it's sooo hard. Like this morning, woke up with a migraine (still have it) my back hurts, my jaw is tight, my legs are giddery, but I felt the need to do something really physical, so I cleaned half my carpets, I ache now, my body is tight and shaky and my head is killing me. I forced myself to stop so I can rest, but the urge is not going away. I can't beleive this is what is going on for just one pill everyother day. What do I do. I told my husband we need a pill cutter, I'm hoping that might help.
This is typical hypo.....I don't think it's necessarily due to you taking one pill every other day.
I think it's more that your treatment isn't appropriate for you.
Until our dose is appropriate, we can have symptoms. As we get closer to the optimal dose, the symptoms usually lessen in intensity and frequency.
If you were to do anything, I'd be taking 5mcg every day....
I sure hope you get your lab results soon :)