Question about levo level

[Brucergoldberg]

Hey guys,

I was 6.01  tsh  and started taking .025   16 days ago.  I went and had a blood test yesterday and they told me I was 5.01.  Its come down a little bit.  I don't see the new endo for 2 more weeks.  Should I take a little bit more of the levo, or keep taking the .025?  I still feel AWFUL and definitely HYPO.  Someone says it takes time for this stuff to set in, but .025 seems like so little when I know for 6 months I had Hashi before I was diagnosed.

Thanks

[goolarra]

Do you take any other meds?  Have you been especially sensitive to other meds that you've taken in the past?  Have you had an ultrasound?  Any other known medical conditions?

Levo really doesn't affect you on a dose-to-dose basis.  The levels build over time, and it's the overall level that makes you symptomatic.  Levo is a T4-only med.  T4 is the "storage" form of the thyroid hormones, and can't be used by your cells as such.  It has to be converted to T3 before your body can use it.  More properly, it's the FT3 level that causes symptoms.  T4 levels don't usually cause the peaks and valleys you're describing, but affect you on a more continuous basis...tired and irritable all day long, etc.  

When you have your phase of feeling like crap (okay, it's easier than listing everything now that it's been defined!), have you checked your HR and BP compared to other times of day?  

Do you have FT3 and FT4 results with ranges?  I only see TSH further up in this thread.  

[Brucergoldberg]

feeling like crap = a wave of shakyness, extreme fatique, leave me alone, feeling like ive been up for 24 hours straight, irritability.... higher ear ringing... and then it goes away until the next day...  I read the meds take 5 hours to set in.  Could it be from this?

Also I cut my meds in half.  Im only taking .012 now.  for two days.  Last test was 5.01 tsh..

either way, this disease *****!

[goolarra]

Okay, ear ringing can be a symptom of both hypo and an allergic reaction.  If you are very sure that the ringing started when you began taking levo, that would support the case for allergic reaction.  The different brands of levo (Synthroid, Levoxyl, etc.) and the generic all have different fillers, and these sometimes cause people problems.  If I were you, I'd call my doctor and ask to switch to a different manufacturer.  It's also possible to go to a compounding pharmacy and get levo with no fillers.  This should let you know in short order if you have an allergy to one of the inactive ingredients in what you are currently taking.

You could then get back on the dose that your doctor has prescribed.

The other possibility is that the ear ringing was coincidental to the start of levo.  You have Hashi's, so your thyroid is losing function steadily.  Often, after starting treatment, our symptoms get worse for a while.  This is because it takes 4-6 weeks for levo to reach its optimal level in your body.  It's also because our thyroid function is lessening all the time due to the antibodies...as we put meds in, our condition is simultaneously worsening.  So, sometimes it "looks" like the meds are causing symptoms when, in fact, we are just developing new hypo symptoms due to further compromise of the thyroid and meds doses that haven't "caught up".

I think you should switch brands (or go to a brand from the generic if that's what you're taking).  It might be a really quick fix.  If the ear ringing goes away, you'll have your answer.  If it doesn't, you'll know that you have to work on getting your levels stabilized for it to be alleviated.

Can you expand on "feeling like crap" three hours after you take the levo?  What exactly are your symptoms?

[Brucergoldberg]

Yes the new symptoms are:   ear ringing and about 5 hours after I take my levo I feel like crap for about 3 hours, and then I gradually get better.  I cut my .025 in half yesterday and today.  Feel a tiny bit better, but still have terrible terrible ear ringing.

[goolarra]

I'm trying to have a dialogue here, but you don't answer questions, so it's tough to give you a thoughtful answer.

Have you developed new symptoms since starting the levo or have your hypo symptoms just not been alleviated yet?  Some people have issues (allergies, sensitivity) to some of the fillers in the different brand names or the brands vs. generic.  This may be the case with you, but when the symptoms started is key to figuring this out.  

What you describe at 11 am sounds more like low blood sugar than thyroid.  Being hypo can cause your blood glucose levels to become unstable until you get on a therapeutic meds dose.

Yes, things can get worse.  You start playing with your meds now, and you won't know which end is up in a little while.  You have to stay on a path and follow it through with this disease, ride out a few rough spots.  

[Brucergoldberg]

Im picking up on a pattern...  Here it is:

Wake up and take Levo at 6:30 am
Eat breakfast at 9:00
About 11:00 I start feeling like death, shaky, irritable, leave me alone
1:00 eat lunch
Start gradually feeling better until about 9:30 pm.  Feel wonderful about 7:30 pm or so.
Go to bed, ears start ringing louder etc, feel like death again

So I think to myself that I feel pretty bad about 2 hours after I take my levo which sorta leads me to believe im taking too much even at .025.

who knows,,,,,,   i tried to cut back to 1/2 a pill today.  we shall see.   certainly cant get worse.

[goolarra]

Relax!  You just can't do this.  Thyroid meds take time to settle out.  25 mcg is a very reasonable and conservative starting dose.  Wait four weeks from the start of meds, have your labs done (including FT3 and FT4) and re-evaluate then.  If you second guess it in the meantime, you're just defeating the purpose.  Do you have any new symptoms since starting meds, or have your symptoms just not gone away yet?  Please answer the question.

Also, I cannot stress enough how important FT3 and FT4 are.

I'm all for educating yourself, believe me, but don't drive yourself crazy.  If you've recently had $1MM worth of tests, an angiogram is probably superfluous at this time.  Wait until you get your thyroid under control.  I'm willing to bet that most of your probelms will be solved once that happens.

[Brucergoldberg]

I just had a thought...  I feel worse after i take my meds...  im only on .025   my tsh is 5.01.

maybe i dont need that much yet?

[Brucergoldberg]

Holy cow..  I just read something on another board that is really scary.  This woman posted that her ear ringing started right after she started her LEVO.  She also got bad neck pain.  Her endo told her that when you start levo it can bring out some crazy stuff.  In her case, she has a clogged cartoid artery and the ringing noise is being brought on by the clogged artery in her neck.  I am having an angiagram next week!   scary!

[goolarra]

Sounds like you might start to shop for a new doctor???  Levels don't have to be far off to make you feel terrible, especially with Hashi's.  Since she said your levels are not "high" enough to have these issues, she's obviously talking about TSH.  High TSH causes NO symptoms.  It's low FT4 and especially FT3 that cause symptoms.  I'd look into finding a doctor who treats on the basis of the frees.

[Brucergoldberg]

My Endo told me that she finds it hard to believe that all my symptoms are from being hypo.  Ive had every test in the world.....  She says my level is not high enough to have these many issues....  I guess she typically only gets the mild cases or something..

[goolarra]

I think you ought to wait the two weeks.  Levo doeasn't reach a stable level in your system for 4-6 weeks (not what someone says, but a fact).  It's going to build even more over the next 14 days.  This is not a day-to-day medication...it builds in your system.

If you increase sooner, you end up chasing a moving target, since you don't know where your current dose is ultimately going to put you.  

If you read the dosing instructions from Synthroid (on their website), you will see that if you are over 50, or have been hypo for more than a few months, or have a heart arhythmia, starting dose should be 12.5-25 mcg.  Your doctor is doing the right thing (just from the amount of time you say you were hypo before diagnosis).

There is no way to hurry this process...patience.  If you try to hurry it and end up hyper (overmedicated, or started on too high a dose, or increased too rapidly), you cost yourself more time and symptoms in the long run.

I was all three of the above when my PCP started me on 88 mcg of levo.  It cost me MONTHS, since I ended up having to back down to 25 mcg and increase at a snail's pace.  Slow and steady...

You'll most likely need an increase in two weeks.  But how much?  You have no idea at this point.

Also, it's very important to increase based on FT3 and FT4 levels, and not TSH.  TSH, a pituitary hormone can be influenced by many factors other than FT3 and FT4 levels.  If TSH is all that was tested yesterday, then you REALLY have no idea where you're at.

[annamae26]

yes you seem undermedicated since you have symptoms and your tsh is high. wonder what your free s  are--  i would be tempted to take more but i think i would clear it with the dr first- i would not ask i would tell him i want to bump up my med due to my symptoms. to me- its better to take a smaller amount than my dr knows rather than a larger amount because you can get in trouble down the road with you lab numbers. will be interesting to see what others on this board think..