hashimoto related questions !

[hash567]

hello ,
I am 26 years old and have hashimoto ,
my question is , am i to have the symptoms back for a 3 and a half months each time i increase the dose of eltroxin ,according to tsh test ??
second question , does hashimoto causes dry peeling lip ??

thanks,

[goolarra]

Can you describe the symptoms you get when you increase your dose?

TSH is a very poor indicator of thyroid status.  You should get free T3 (FT3) and free T4 (FT4) tested and use those to adjust your dose, not TSH.

Hypothyroidism can cause dry skin, so I'm sure it can cause dry lips as well.

[MANmom]

Wow, funny you mention this, I have had dry peeling lips a lot in my life and I do have Hashimotos...I don't know if it is related, but I will be interested to hear from others on it.

[hash567]

hallo,
some of them started after starting eltroxin ,and others were before ,when in steady state(more than 3 months ) decreased and when increasing the dose return ;
auditory hallucinations after starting the eltroxin ,increases when increasing dose ,
depression ,swelling eye lids ,restless,continous repeating of thoughts ,dialogues,situations,  in addition to obsessions and  bad cognitive situation !
the above return when increasing dose for 3 1/2 months ,

i am now taking 650mcg/week
my ft3 is near the lower bound !

thank you very much for replaying !

[goolarra]

I just want to make sure I'm understanding you right.

You were on a steady dose for three months, and the symptoms you describe went away.  Is that correct?

Now, every time you increase your dose you get the symptoms back.  Every time you increase, the symptoms last for 3 1/2 months.  Is that correct?

Do you have your actual numbers for FT3 (and reference range)?  Do you also have FT4 (and range)?

[hash567]

]]]You were on a steady dose for three months, and the symptoms you describe went away.  Is that correct? [[[
it took 3 1/2 months to achive steady state!

]]]Now, every time you increase your dose you get the symptoms back.  Every time you increase, the symptoms last for 3 1/2 months.  Is that correct? [[[
correct .

]]]Do you have your actual numbers for FT3 (and reference range)?  Do you also have FT4 (and range)?[[[
when been on 600mcg/week for 3 months:
tsh :  .29     .35 -4.2
ft3 :   4.4      3.5-6.5
few weeks later the tsh increased to 4.5 and i increased dose to 650 !

[goolarra]

Do you know what your FT3 was a few weeks later when you increased to 650 mcg?
Did it go down when your TSH went up?

When you were on 600 mcg (TSH 0.29, FT3 4.40) were your hypo symptoms all gone?  Your numbers then look pretty good.  Your FT3 could be a bit higher, but then again, your TSH is saying that your dose is fairly well adjusted.  Some of us are just more comfortable lower in the range.

And your symptoms listed above have always gone away eventually after the increase?  That might indicate that you are sensitive to the medication and maybe need to take smaller steps...maybe increase 25 mcg/wk, then 25 more later on.

[hash567]

]]]Do you know what your FT3 was a few weeks later when you increased to 650 mcg?
Did it go down when your TSH went up? [[[
i did not test yet !

]]]When you were on 600 mcg (TSH 0.29, FT3 4.40) were your hypo symptoms all gone?  Your numbers then look pretty good.  Your FT3 could be a bit higher, but then again, your TSH is saying that your dose is fairly well adjusted.  Some of us are just more comfortable lower in the range.[[[
not all of the hypo symptoms were gone !
that what is happening in my case ;I increase dose the tsh goes down near 0-1 then goes up near 4-5 .

]]]And your symptoms listed above have always gone away eventually after the increase?  That might indicate that you are sensitive to the medication and maybe need to take smaller steps...maybe increase 25 mcg/wk, then 25 more later on.[[[
most of them gone away,few decreased .
this time I increased only 50 and not 100 (700mcg/week),and waiting to see the result ,
increasing 25mcg/week each few months means that it might take years !!
where does this sensitivity come from ? could that indicate being hypo for very long period of time !
Thanks a lot ,

[goolarra]

If you have been hypo for a very long time, starting out slowly on meds and increasing slowly is recommended.  I don't know where the sensitivity comes from.  I'm very sensitive to levo, but also to all other drugs.  I also feel that I might have had a low-normal thyroid all my life since I feel so comfortable at the very low end of the FT3 range.

If your TSH goes down after a medication increase and then goes back up, it could mean one of two things.  1) Hashi's is destroying your thyroid more all the time, so you need more levo all the time.  Your increases are just barely keeping up with the loss of thyroid function.  2)  You cannot use TSH to regulate your medication, but have to go by symptoms and FT3 (this is the best way to go about it anyway).

It will definitely lengthen the amount of time it takes to reach a stable dose if you go very slowly.  However, you might find that it works to increase half the amount now (like you just did) and then increase the other half in, say, three weeks or four instead of waiting the full six. This schedulet still gives your body longer to get used to the increase.  It takes longer, but at least you aren't suffering the side effects of the medication.

Keep us posted on how the 50 mcg increase is working for you  

[hash567]

hello ,
well ,today is more than one and a half months that I am taking 650 mcg/week,
repetitive thoughts ,depression ,restlessness ,obsessions ,hair loss,eczema and bad cognitive situation are among the things I have .
some times I get flashes of clear mind and good vision ,but that last only for seconds!
the result of the lab tests shows low ft3 of 3.7 while the range is 3.5-6.5 -lower than that when I took 600 mcg/week- and so today I start taking 700 mcg/week.
worried about  the side effects that might appear , and eager to improvement !

thanks alot

[goolarra]

So, with the increase from 600 mcg to 650 mcg, your FT3 went from 4.4 to 3.7.  My best advice at this point would be to try adding a T3 med (e.g. Cytomel in the U S) to your levo.  I'd like to see FT4 to see where it is relative to FT3.  My guess is that you have a "conversion problem"...your body does not convert T4 (the "storage" form of the thyroid hormones) to T3 (the "active" form) well.  So even though you may be taking plenty of levo, your body cannot use it, and you remain hypo.

Ask your doctor about adding a small amount of T3 (about 10 mcg).  T3 is about four times more powerful than T4, so keep in mind that 10 mcg of T3 equals about 40 mcg of T4.  Most people who take T3 split it into two doses...one first thing in the morning with their levo, the second when they need a boost...early or late afternoon?...you have to experiment to see what works best for you.

Next time you have blood work, request FT3, FT4 and TSH.  Having all three really helps in figuring out the puzzle.

[hash567]

hello ,
]]]Next time you have blood work, request FT3, FT4 and TSH.  Having all three really helps in figuring out the puzzle.[[[
well ,I did , I just didn't post them ;
tsh : 1.72      .35-4.2
ft4  : 17.4       10-20

]]]My guess is that you have a "conversion problem"...your body does not convert T4 (the "storage" form of the thyroid hormones) to T3 (the "active" form) well [[[
is it possible to foresee that in the time my tsh goes up few weeks after going down ?!
I didn't finish with the tsh, so is it wise to start combine meds ??

[goolarra]

Well, your FT4 is up very nicely in the top third of the range.  That just reinforces my theory that you need to add some T3 meds.  You have plenty of FT4 available for conversion, but it's just not happening, so your FT3 remains too low.

I think you may have two separate problems going on here...the T4 to T3 conversion and the fluctuating TSH.  TSH can be affected by so many things that it's hard to speculate on what's going on.  Those of us with Hashi's often have "ups" and "downs" in our thyroid output due to the nature of Hashi's.  Perhaps that's what you're experiencing.  I'm just afraid that you never will stabilize your TSH as long as your FT3 remains so low.  I don't think just adding more T4 is going to help a lot.  It could at least be worth a try...

[hash567]

hello ,
so what I understand is that when increasing dose one should not have the symptoms back,unless he is sensitive to the med !

regarding what you think is a conversion problem, my ft4 was 15 when I was primary hypo with 0 levo , so 650 mcg/week increased the ft4 with 2.4 only, what does that mean ?

I wanted to ask also regarding the hallucinations as a side effect of the levo, what is the treatment? is this a permanent or transient thing ??

thank you very much for replying ,

[goolarra]

Correct, if you increase dose, you should not get the symptoms back.  If they do come back, you are either 1) sensitive to the medication, or 2) never needed the increase to begin with (i.e. you were increased based on TSH, but your FT3 and FT4 did not support the elevated TSH).

Your FT4 never looked too bad.  15 is mid-range and 17.4 is in the top third.  Both those numbers are good and don't look like they need adjusting.

Hallucinations are not a side effect of levo that I have ever heard of...that doesn't mean they're not, just that I'm not familiar with that side effect.  You might try posting a new question with levo and hallucination in the title line to get other members' attention.

I just don't think you need to keep increasing levo.  A little T3 might do wonders.

[6hashi]

Hello ,
first I am the same as hash567 !

I did blood work after three months that I am on 700 mcg of levo and here are the results :
TSH : 0.04
FT3  : 4.2
FT4  : 14.2

I still have those repetitive thoughts but they stop for few second and then returnns back , in addition to the depression ,no concentration( less than before) ,I sleep less ,my eye lids less swallowed .

do you still think I have conversion problem ??
these numbers are similar to those I had when I was primarily hypo(elevated TSH) with 0 levo, any explanation ?!

Thanks ,

[6hashi]

bump

[goolarra]

Please repost your entire lab history.  It's all in bits and pieces in what has become a long thread.

Please post:

date
meds dosage prior to labs
TSH
FT3 (and range)
FT4 (and range)

Thanks, the thread is getting long and it's really time consuming to try to pull this all out.

[6hashi]

Hello ,

when diagnosed 2 years ago
TSH 12  FT4 : 14.5(10-20)
initial dose 350 mcg of eltroxin .
more than 3 months on 500 mcg
TSH 3.88  FT's ---
dose 500 -> 600

more than 5 months on 600 mcg
TSH 4.47    FT4 1.3(0.8-2)
dose 600 -> 650

1.5 months after the increase
TSH 1.72    FT3 3.9  (3.5-6.5)   FT4 17.4(10-20)
dose 650->700

1.5 months on 700
TSH 0.04     FT4 20.3(10-20)    FT3  5(3.5-6.5)

3 months on 700 mcg
TSH  0.04    FT4 14.2(10-20)    FT3  4.2(3.5-6.5)
from my experience the TSH is going to rise in few weeks !!
I am still depressed , have the repetitive thoughts ,have swallowed eyes ,concentration problems ...

Thanks ,        

[6hashi]

bump

[goolarra]

I think you have a couple of things going on here.

You have Hashi's, so you are chasing a moving target.  The antibodies are attacking your thyroid and destroying thyroid functiion continually.  Your thyroid is less and less able to produce T3 and T4, so you have to keep increasing your meds to compensate for your thyroid's decline.  This will continue until your thyroid is completely destroyed, at which point it will be easier to remain on a stable dose.  This is why I think your FT4 has changed relatively little despite meds increases.

In addition to that, I think your last three labs indicate that there might be a conversion issue going on, too.  On all three labs, FT4 is considerably higher in its range than FT3 is in its.  

I'd ask my doctor to try adding some T3 to your T4 meds and reducing the T4 slightly to compensate.  You might try going down to 75 mcg of eltroxin and adding 5-10 mcg of T3 (just a suggestion).  If your doctor agrees to that, be sure to split your T3 into two doses during the day rather than just one.  T3 is very fast-acting and doesn't stay in your body long if not used promptly.

[6hashi]

Hello ,
the ratio 5:20.3 is  ~ 1:4 and
the ratio 4.2:14.2 is even higher !!

how can you explain that ?
Thanks,

[goolarra]

No, you can't do that with the numbers.  You have to compare where in its range FT4 is compared to where in its range FT3 is.

So...

FT4 of 20.3 is above range
FT3 of 5 is exactly in the middle of its range

FT4 of 14.2 is a bit below midpoint of range
FT3 of 4.2 is in the bottom quarter of its range

In both cases, FT4 is higher WITHIN ITS OWN RANGE than FT3 is within its range.  Ideally, FT3 should be higher in its range than FT4 is.  I still think you have a conversion problem and would try adding some T3 meds.

[6hashi]

Ok ,so I repeated the test (four months on 700 mcg) and here are the results ,
TSH   0.07      
FT3    4.1       3.5-6.5
FT4    17.2      10-20

my doctor says I shall reduce the dose to 650 mcg/week ,does that sounds as a good idea ?  I am still symptomatic !!

[goolarra]

Well, your TSH has been stable on 700 mcg.  I don't conside the change from 0.04 to 0.07 significant.  

If you are still symptomatic on 700, it makes no sense whatsoever to REDUCE your meds.  Your FT4 is probably a bit high in its range.  FT3 is still much too low.  I still maintain you have a conversion problem.  I'd lower the T4 meds some and add in some T3 (Cytomel), e.g. lower T4 to 88 mcg per day and add in 5 mcg of T3.  Reevaluate labs and symptoms after five weeks and go from there.

Your doctor is reacting to TSH and nothing else.  He's completely ignoring your FT3.  You're not going to feel well until you find a doctor who knows how important FT3 is.

[6hashi]

Hello ,
Adding T3 is what I am trying to avoid and prefer to try  other option first !!
is four months enough time for the TSH to respond ??
my endo told me that I get too much eltroxin and that I should reduce the dose to 650 mcg and repeat TSH in two months!!
I am really desperate, I expected the TSH to rise ,according to what I felt .
can he be right? and since according to the TSH  I am a bit hyper,  this what causes me to remain symptomatic (hypo symptoms) ??
the time factor is important for me ,in one hand I don't want to waste 3 months testing whether 650 mcg/week works fine ,in the other hand I don't want to combine T4/T3 and miss the option of being only on T4 and that works fine for me !!

Thanks,
  

[gimel]

Your TSH level doesn't mean you are hyper.  You are only hyper if you have hyper symptoms.  You actually are still having hypo symptoms.  Trying to increase your TSH level by reducing your T4 meds will only make your hypo symptoms worse.  

TSH does nothing for your body except as a signal to your thyroid glands; therefore, the low TSH itself has no detrimental effect.  The only time a low TSH is of concern is if indicates that FT3 is too high and that is causing you to have hyper symptoms. That certainly is not a concern for you, since your FT3 is in the low end of the range and consistent with hypo symptoms.

Goolarra gave you some good advice.  T4 only doesn't work well for you.  You need to revise your meds to either reduce the T4 med and add in a source of T3, or change to a combo T43/T3 med.  I went through the exact same thing a year ago.  My FT4 level was right at the high end of the range, TSH was .01, but still had lingering hypo symptoms because FT3 was in the low end of its range.  I am now taking both Synthroid and Armour and my FT4 is midrange, and FT3 is in the upper half of its range.   I am still tweaking the meds to increase FT3 just a bit more, but I am already feeling the best ever.

[goolarra]

Is there some other health condition that makes you want to avoid T3 meds?

I think you are out of options as far as T4-only meds are concerned.  Four months is more than adequate time for TSH to respond.  I think you will be wasting time and feeling sick for longer if you lower your T4 meds without adding T3.  It makes no sense whatsoever to lower meds in the face of continuing hypo symptoms.

[6hashi]

Hello ,
I have no other health condotion , I am just not ready for it psychologically , and heared that towards the night tablet one will feel a decline !?? is that true ? how is it taken ?on empty stomach ?? and the most important thing is that I will need to change the doctor who already knows my issues and complications caused by the eltroxin !!

Thanks,

[6hashi]

I also wanted to ask  whether people with conversion problem feel certain improvement ,or they just feel as if they are taking no levo ??

[goolarra]

T3 is very fast-acting and promptly neutralized by your body if not used.  So, most people who take it take half in the morning with their levo and the other half sometime in the afternoon as a "pick me up".  You have to experiment to find the schedule that works best for you.  

I know it's tough to switch doctors, but if your current doctor won't treat you properly, he's pretty useless, isn't he?

You will still be taking levo, just adding T3.  I think you will be amazed at what an improvement raising your FT3 will make.  

[6hashi]

OK , so I am now more than four months on 700 mcg/week ,today and yesterday I felt my heart beating hard like a hummer ,so I will reduce to 650 mcg/week and give it a chance !

[Barb135]

I've had that "heart beating hard like a hammer" for nearly a year now.  I just went through some extensive tests on my heart and I'm being told that it's most likely "anxiety related".  

I am on a combination of levo + 5 mcg/day cytomel.  My schedule is a bit different from most people, as I get up at 3:30 am every day, so I take my levo as soon as I get up; then at 7:00 am, I take my cytomel and that gets me through the day because since I get up so early, I also have to go to bed very early.  For someone who goes to bed later, you might want to take your cytomel around noon or even mid afternoon.  

Cytomel can be taken with or without food, so it's not like you have to wait an hour like you do with the levo.  You DO have to separate it from calcium and other vitamins/minerals by 4 hours though.  It used to be quite a juggling act for me, but now I've got it down pat and I have "alarms" set on my cell phone to remind me when it's time to take meds, vitamins, etc.  

Cytomel isn't anything to be afraid of and it can make a world of difference in the way you feel.  

[gimel]

I don't understand.  You seem unwilling to accept the very good advice given to you to revise your meds and start taking some T3, in order to get your FT3 higher in the range, in order to alleviate your hypo symptoms.  You continue to fret about the the dosage of your T4 meds, as though that is the only answer.  It is not the answer, I assure you.  What more can we tell you?