Is this thyroid hell? Levo half life??

[dm501]

Hi.  I've been reading many threads and sounds like they are lots of knowledgeable thyroid people here. Hoping you can help with my mess.  I was going through an IVF cycle and the immune specialist I was seeing wanted my TSH under 2.0 for possible conception.  I have never been hypo/hyper before.  My normal levels were TSH 2.8, T3free 2.8, t4free 1.0.   So the doctor prescribed levo 25mcg to get the TSH down.  When I first started taking it I immediately noticed that I was having heart palps and my eyes seemed really dry and blurred vision. I had other stresses going on so decided to wait to start it for another couple of weeks.  When I started back up I only did 12.5mcg.  This seemed to go okay and my TSH came down to 1.7 after a month so I was happy with that dose.  

I started prepping for my IVF cycle which included estradiol shots.  I was told the high levels of estrogen would make the TSH rise. It did start to go back up and they increased my dose to 25mcg.  Towards the end of my cycle my TSH had gone as high as 4.04 and I was on 50mcg of levo. Even though the TSH went higher the T3free and t4free were still in normal range.  My cycle failed and I had to stop all IVF meds (estrogen, progesterone, etc.).  The nurse had me stay on the 50mcg of levo.  In hindsight I think I should have at least gone back to my precycle dose of 12.5mcg right away since I stopped the estrogen shots.

After 2 more weeks of staying on the 50mcg levo I began feeling awful.  Heart palpitations, jittery, hand tremors, nervous/anxiety feeling, yet very fatigued, like I couldn't even walk.  Sweaty hands. No appetite..had to force myself to eat.  I ran labs again and TSH was .808, ft3 – 2.7,  FT4 – 1.22. I dropped the levo to 12.5 and then after a few days just stopped altogether.  This was around July 19-22nd.

Here it is September 13th...almost 2 full months since stopping the levo and I'm still having bouts of this horrible feeling.  It seems to come in a cycle.  Really bad for a few days, then maybe a little better for a couple, then back bad.  The mornings are the worse. As soon as I open my eyes and wake I'm aware that my heart is pounding, I'm sweaty, shaky, jittery, anxious, feeling of dread. It's like being on speed but I'm so tired at the same time.  As the day goes on it seems to get better and by night time I feel much better and can be productive and delay going to bed because I fear the next morning.   I've also lost a lot of weight.  I was about 137-139 normally and now I'm down to 125.  5'7" female.

Sorry for so long..but I guess my question is...how long can the levo really stay in your system and mess you up?  I've been to so many doctors trying to figure out what is wrong with me.  One of the PAs said the half life of levo was really long at 50mcg and I thought she said it could be 4-6 weeks.  Well I'm on week 8!  I've had adrenal tests, EKG, cardiosonograms, CBC, etc trying to figure this out and they all come back normal.  They just think I'm having anxiety or stress.  Well it's not that.  I'm actually in a good place with work and personal life and getting ticked off that this "thing" is dragging me down.  I wish I had never taken levo!

Thanks for any input, similar stories, etc.  I'm so tired of telling my husband how bad I feel every day and he is getting really worried too.

Marie

[dm501]

Thanks Barb.  The reference ranges were:

free t4:  1.22 ng/dL  Range:  0.82 − 1.77
TSH:  .808 uIU/mL Range:  0.450 − 4.500
free t3:  2.7 pg/mL 2.0 − 4.4

This was the July 19th test when I started feeling awful.  I feel better now than I did in July and August but still not right.  My results on 9/9 were:

free t4:  1.06 ng/dL  Range:  0.82 − 1.77
TSH:  1.9 uIU/mL Range:  0.450 − 4.500
free t3:  2.8 pg/mL 2.0 − 4.4

Before I even started the cycle I felt fine...none of these symptoms to speak of and my levels were normally:

free t4:  1.00 ng/dL  Range:  0.82 − 1.77
TSH:  2.88 uIU/mL Range:  0.450 − 4.500
free t3:  2.8 pg/mL 2.0 − 4.4

So I guess my results now are almost back to where I have always been except for the TSH.  I could have sworn the PA looked up the half life of the levo and told me it could be 4-6 weeks. Maybe she was referring to how long it would take my body to adjust after having been overmedicated with levo?  

The adrenal tests were just blood tests like ACTH, aldosterone, DHEAS, CK, Cortisol, Rheumatoid factor, ANA, CRP, ESR, and a CBC panel. All came back within normal ranges.  

It's been crazy trying to figure out why I have these symptoms.  I was also on about a 2 month course of 10mg prednisone to fight inflammation and when the cycle failed I tapered back off over 10 days. I felt fine after tapering, no noticeable symptoms at all.  It was about 2 weeks later that this horrible jitter/fatigue/heart palps started.  

As far as B12 I do take a special supplement for it (Metanx) because I am hetero for a minor MTHFR A12988C gene.  

I'm an ex-smoker and did fall of the wagon when I got my negative on the cycle.  I seem to do that after every cycle though (this was my 3rd failed one) and never had symptoms like this before just from smoking (6-7 a day). This was the first cycle I ever took the levo to manipulate the TSH though so I have to believe there is a connection?  

On the t3/t4 does being on the lower end of the scale lean you hyper or hypo?   When she upped my levo to the 50mcg towards the end of my cycle my t3 was 1.9 which was low on the reference range.  Now without meds it has swung back up to 2.8 normal range.

Thanks for the feedback.  I've never studied this stuff before because never had a problem with it.  

Marie

[Barb135]

The half-life of synthroid is approximately a week.  After 8 weeks, your dose should be out of your system.

What are the reference ranges for your FT3 and FT4?  Ranges vary lab to lab and have to come from your own report.  Your levels don't appear to be hyper; in fact, your FT3 actually looks somewhat hypo.  Many symptoms can "cross over" and apply to both hyper and hypo.  I had most of your symptoms, except weight loss, when I was at my most hypo.

Your doctor, apparently, doesn't understand that TSH is variable and is affected by a number of things, not just thyroid hormones.  Simply trying to adjust TSH prior to the IVF was pretty useless, since TSH is a pituitary hormone and does not really indicate actual thyroid function.  Free T3 and Free T4 are the actual thyroid hormones and whether or not you get pregnant and/or successfully carry a baby will depend on those levels, not TSH.

What adrenal tests have you had done?  Have you had vitamin B12 levels tested?  Low levels  of B12 can cause the type of fatigue/exhaustion you mention.