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Massive fluctuation of TSH, on replacement for 41 yrs

I am 52 yrs old and have been on thyroid replacement since age 11, had a huge goiter.  Was stable all through puberty and then in my 20's they made me switch from Armour to Synthroid.  Took about five years to get regulated, always changing between .125 and .150.  Had multiple pregnancies with no fluctuations.  Surgical menopause over 4 yrs ago, no changes.  My TSH usually runs around 2.  Two months ago it jumped to 10 and they upped Synthroid  from .125 to .137.  Now, two months later TSH is 47!  They just upped dosage to .175.  Any ideas what could be going on?  
8 Responses
Avatar universal
Did they test anything but TSH?  If so, please post other thyroid labs with reference ranges (ranges vary lab to lab and have to come from your own lab report).  

How did you feel before each of the two most recent increases?  Were you feeling hypo?  Also, after it taking about five years to get regulated, how did you feel then (when changing between 125 and 150 mcg) before your TSH went off?
Avatar universal
I wasn't given any other results, or told of other testing, just a phone call about TSH.  I have many other things,psoriasis and psoriatic arthritis, ANA tested positive for lupus, although all other lupus testing was negative.  I suffer from fatigue, muscle and joint pain and swelling, weakness in wrists and ankles, which could be either thyroid or arthritis.  Been tested for vasculitis and demylenating disease and all came back normal.  I hadn't gained any weight, but my hair started falling out beginning in february and have lost at least half, but it's not coarse, it's super fine now, and has stopped falling out in large amounts. Skin no different.  In the past, I always knew I was hyper from heart palpatations, never felt particularily different when low, but maybe I'm always running low, I see from information that running at 2.0 is considered high for replacement levels.  I've never really paid too much attention because was diagnosed so early in life and have never really had a problem.  I did ask for a T3 several years ago and was told it was unnecessary, because the T4 turns into T3.. I always liked being on Armour and was told they wouldn't do that, that is is not a reliable as Synthroid.  Have insisted on brand, no generic, as I believe that was causing some of the fluctuation problems.  Time to see endo?  Go to Mayo?
Avatar universal
It might be worthwhile to make a call to your doctor's office and see if they ran any other tests besides TSH, and if so, get the results from the last several.  For comparison, it would be interesting to see what your FT3 and FT4 levels were before your TSH started to go up and what they were through the two increases.

FT3 and FT4 (FREE T3 and FREE T4, which are different from total T3 and total T4) should be ordered every time you have labs.  TSH is a pituitary hormone and subject to many influences other than thyroid hormone levels.  T3 and T4 are the actual thyroid hormones, so FT3 and FT4 tests are a much more direct measure of your thyroid status.

Do you know if you have Hashi's (autoimmune thyroid disease)?  Once we have one autoimmune, we are more likely to get a second than the general population is to get a first.

The body does convert T4 to T3.  However, some of us are more efficient than others in doing that.  Many people are slow converters and need to add a little T3 to their meds to feel well.  If you don't convert well, it doesn't matter how high your FT4 levels are, you are going to feel hypo.  However, many doctors were taught in med school that T4 was all that was needed...it's their story, and they're sticking to it.

Time to see an endo?  I don't know about that.  If you did well on Armour, maybe you should find a doctor who is willing to prescribe that (many endos use strictly synthetics).  What kind of a doctor is currently managing your thyroid?

If your doctor has only been ordering TSH and he won't use T3 meds, it might be time to shop for a new doctor.  

As to why your TSH suddenly started going up after all these years...any big changes in your life?  Stress (physical or emotional)?  Lifestyle changes (diet)?  Changes in how/when you take your meds?  Any new meds for anything else or new supplements?  Head trauma?  Anything at all you can think of that might have changed sometime between the last time you had labs prior to February (when your TSH was your normal) and February (when it was 10)?
Has you TSH stabilized yet?
Avatar universal
I plan on strongly requesting the free T3/T4.  I know that has never been done and dr and I have a good enough relationship that she should do it just to shut me up.  The only change in the past year is I now take .50mg of tramadol, once in the am and another in the pm, but from what I've read it shouldn't interfere with absorption.  I am a firm believer that I have never felt the same once they changed my from Armour to synthroid/levothyroxin.  I don't know anyone in KC that prescribes the old stuff.  It was great for me, so I am wondering if I am one of those people who has not converted well, but can't find anyone to believe me.  Know anyone in the Kansas City area?.

I take many meds: synthroid, nexium, meteprolol (rapid heart rate), meloxicam, Embrel, azathioprine, tramadol, multi vitamin, calcium and fish oil.  Have taken all of them at the same time each day for over a year now, except the tramadol, so I don't believe it is a change in medicine.  Thank you for your help.
Avatar universal
Oh, and I see an internist for my pcp. And have no idea whether I had Hashimotos and my mother doesn't remember.  But I do have several autoimmune duseases now and seem to be getting more as I go along...
Avatar universal
I have the name of a doctor in your area, recommended by one of our members.  Sending link by PM.
Avatar universal
Once you have Hashi's you usually have the antibodies for life, unless your thyroid is surgically removed or it dies off completely.  Then antibodies can sometimes go into remission.

Thyroid peroxidase antibodies (TPOab) and thyroglobulin antibodies (TGab) are the two tests you want to ask for to see if you have Hashi's.  If either or both is elevated, Hashi's is indicated.

Have you run that list of meds by a pharmacist to see if any of them interact or should not be taken at the same time?
Avatar universal
Yes, and other than a slight risk from multi vitamin, all ok.  But I now take the synthroid by itself.  Thanks for the other test names, I'll ask for them as well.  This has been a big help.
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