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hasimoto's disease

My thyroid was stable for about 4 years, then suddenly, after my Mom's death, my thyroid went into hypothyroid. Level at 14.
After two months, had a blood text again and my levels were normal.
Six weeks later, on 100 mcg, my thyroid went back up to 12, hypo
Another blood test two months later, still in hypo.  doctor but me on 120 mcg.
Two months later, my thyroid was at above normal but not in the red
Doctor put me on 150 mg and six weeks later, I went into hyperthyroid.
My question, my Doctor wants to put me at 120 mcg of levoxine, but I think that's too high.
Shouldn't the doctor start at a lower dose instead?
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649848 tn?1534633700
COMMUNITY LEADER
Is it safe to assume that when you say "Level at 14" or "went back up to 12", you're referring to a TSH level?  Is your doctor testing anything other than TSH - like, Free T4 and Free T3, which are the actual thyroid hormones?

TSH is a pituitary hormone that doesn't always correlate with actual thyroid hormone levels, nor does it correlate with symptoms.   Trying to adjust medication according to a TSH level is like trying to shoot a moving target because TSH is affected by things, other than thyroid hormones.  

If you've had tests for Free T4 and Free T3, please post their results, with reference ranges, so we can see what's going on with those.  

Also, since symptom relief is the ultimate goal, please list your symptoms, as well.

I'm sorry about your mother's passing - that's always difficult.  What dose did you actually start out on (when your mother passed away)?  
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3 Comments
Thank you, I think it was at .88 mcg or 100 mcg.   Question: Are there more tests.  I did get a T4 and T3, which showed normal when I had my test results in hand.  That's when, briefly, my thyroid lab report was normal.  But, you say "FREE. "  Are there tests I should request include , "Free T3" or is it the same. Because it just shows "T4 and T3 plus TSH.
Yes, I was referring to my TSH Level.
I didn't get the results in hand because of Covid 19  
When you say "T4 and T3" that, typically refers to Total T4 and Total T3.  Those indicate all of the T4 and T3 in your blood, but much of that is bound by proteins and can't be used, therefore, we test "Free T4 and Free T3" because that's the amount that isn't bound by protein so is available to be used by the body... Free T4 is converted to T3.  Free T3 is then used by nearly every cell in your body.

When you get blood work, you should always specify Free T4 and Free T3.  If you'd care to post the results you have access to, with their ranges, that would give us a little bit to go on.  

What symptoms do you have?
My thyroid levels have been out for one year.  I've been feeling horrible.  Now, in hyper, I feel jittery, tired, anxious, moody and depressed.  Actually, I've been feeling that way since my TSH went up into hypo.
My dilemma right now if that I have to be my own "Doctor"   I was on 125 mcg and my TSH levels were still in hypo range and that's when my Doc put me on 150 mcg.
First of all, my thyroid levels are going wacky, and that's my "Hasimoto's rearing its ugly head.
My doctor is going to refer me to an "Endocrinologist," but that will take a few months
In the interim, my doctor (who hasn't a clue about dosing) wants to put me back to the original dose of 125 mcg.
Now, isn't that too much?  My thinking is, if my thyroid is producing way too much thyroid hormone, would'n't 125mcg adding fuel to the fire?
I have to decide today, (she out of the office today) if I should request a much smaller dose.
Perhaps, 88mcg or 100 mcg.   I'm so confused and I just need some assistance on whether 125mcg would be too much.
I will, for sure, request the "Free T3 and T4 on my next blood test.
To be honest, my husband and I were ordering tests every six weeks to see were my thyroid levels stood.
I do have them
Sept 30 2019: TSH..13.13........TSH and T4  Normal  No T3 included   On .88 mcg
Oct 29 2019:  TSH 5.68 (Moderately high)  TSH and T4 normal  Doctor went higher to 100 mcg.
Dec 19 2019:  TSH and "T3" 3.94..Normal....TSH and T4 1.53  Normal..(T3 include)   .........
..Feb 2020 Didn't get lab work results, but my TSH was 14 .. Doctor higher the dose to 125 mcg.
April 9 2020: TSH and T3 4.51 Moderately high (does it have to say "Free" as in Free T3?)  Those are different orders if I'm correct?   Technician higher dose to 150 mcg.
May 2020  Hyper...Didn't get lab orders.
That's the best I can do.   What is need assisantance with is: My doctor wants to put my on 125. and I think it should be a lot lower.
Do you have any ballpark answer.
If you can't.  Do you agree w/ me that 125 mcg is just to high when I'm in hyp
649848 tn?1534633700
COMMUNITY LEADER
Your TSH is indicating that you've been hypo the entire time.  If you were hyper (or even adequately dosed), you TSH would be much lower than it is.  

The symptoms you're having can also apply to being hypo... I had them all when I was at my very most hypo...  except for the jitters, which could be attributed to anxiety.

Unfortunately, many of us have to try to be our own doctor - that's how we end up here.  :-)  Don't be surprised if you wait months for the endo appointment and nothing gets better because not all endos are good thyroid doctors.  

I can't really answer your question about the 125 mcg dose, right off hand because I'm not convinced you're  hyper, especially since these symptoms actually started when you were hypo.  It would be really helpful if you'd let me know what the actual numbers, and reference ranges, were for the T4 and T3 tests you did get.  Just because they were in the "normal" range, doesn't mean they were where you needed them.   If they were low in the ranges, they would still indicate hypo.  

Yes, lab orders have to specify Free T4 and Free T3 (could also be written as FT4 and FT3), because without the specification that Free T4 and Free T3 are desired, the lab will go ahead and do the Total T4 and Total T3.  

Where were you ordering your lab work from?  I know some labs (national chains) allow you to get your own, but from what I've seen, they don't allow one to order the Free T4 and Free T3.  There are online sites from which you can order the tests you want and they send you a lab order to print and take to a local lab (national chain).  I order from one of these sites every once in a while if I think I need labs between the times my doctor orders them.   The last ones I ordered were $85 for TSH, FT4 and FT3.

Because of your symptoms, you probably also need a Reverse T3 (rT3).  rT3 is a mirror image of FT3, but it's inert.  Too much rT3 can block the cell receptors so FT3 can't get in.

I think the last time I ordered, the labs, with rT3 were a little over $100, which got me everything I wanted/needed.
Helpful - 0
4 Comments
Wow, it seems so complicated!   But, I know one thing for sure, I can feel the difference, being in hyper.  A huge difference.  My hair falls out more, my heart palpates, esp. after 3 pm.  I feel more awake, to where a few weeks ago, I could barely get off the couch.
I'm most certainly in hyper.  
I'll have my husband read this and I am so appreciative of your guidance and help.
I will keep you posted on future tests and copy what you just laid out for me.
Thank you so very much,
Aileen
Also, I'd like to give you more of my history, starting from age 26, when I was first diagnosed.. There is more to the story.  Thanks
Also, My doctor said my TSH was below normal and into hyperthyroid.  I'll get the report as soon as I can.  Kinda hard to do right now... Thanks
You're welcome to give me all the history you'd like to give me... if there are other things going on, that's useful to know.  

The whole thing can get somewhat complicated, as many of us with Hashimoto's are also deficient in some vitamins/minerals that affect thyroid function as well.  The main ones we find deficient, and often recommend testing, are Vitamin B-12, Vitamin D and Ferritin (storage hormone for iron).  Vitamin B-12 and or Vitamin D deficiency can also cause palpitations and anxiety.   Both are also necessary for proper metabolism of thyroid hormones.

You listed in a previous post, TSH results you've received in the past and mentioned that you've been tested a few times for T4 and T3, but there's only one T4 listed... Do you have a reference range for that?  The result, itself, looks like one we'd see for Free T4.  It appears that it might be somewhat high in its range (according to some ranges we see), but reference ranges vary from lab to lab so we need to know the range used by your lab.  

If that T4 is Free T4 and is in an upper portion of the range, I'd guess that you aren't, adequately, converting Free T4 to Free T3, which is also quite common.  

I'm certainly not saying you aren't hyper because 150 mcg levo is a pretty hefty dose, but there are a lot of symptoms that "cross over" and apply to both/either hyper or hypo... I had horrible hair loss and heart palps when I was at my most hypo and I'm dealing with some palps now because my endo reduced my hormone dosage a few weeks ago and I'm feeling hypo now.  

Do you have any of the other symptoms of being hyper, such as weight loss, diarrhea, hand tremors, which are typically associated with being hyper?

I'll look forward to any other information and/or lab results you might want to post.

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