What is your medicine dosage for hypothyroid with HASHIMOTOS

[Brucergoldberg]

Hello,

Im having a really hard time with taing my levothyroxine (i take tisorint .25). I understand the need to build it up in the system.  At the risk of being bombarded by my mentors on here id like to ask the following questions.

I have had really bad symptoms for about 16 months now.  The highest my tsh has ever been was about 10.00 and that was about 3 weeks ago.  I am only taking .025 of the thyroid.  I always have a bad reaction after taking this amount despite the amount being so small.  I want to increase but am afraid that my bad reaction will also increase as well.

I am curious to know a couple of things:  If you have hashimotos, what dosage of medication do you take?   Did you start on this amount or did you work your way up?  Have you tried taking more, or tried taking less?  what happens then?

DO you feel yucky after taking the thyroid medication>?  I get about 4-5 hours of "yuckiness" after taking just .025.  

Whats odd is I know a couple of people that have been hashi for a long time and take a very large dosage of meds (175 or 150) and do just fine...  They live thier lives just like a normal person without the disease.  On the other hand I take a tiny little bit of the thyroid and suffer from it.  I loathe my mornings, love my evenings.  Do not want to go to bed (its 10:30 here in fact and Im feeling pretty good).

Thank You,

Bruce

[Brucergoldberg]

Ok.  I think im undermedicated..   Im only taking a total of 37.5   thats .25 in the morning and .13 in the afternoon.  I just started with the second dose in the afternoon.  By 1 pm my pulse is through the roof, heart beats quickly, I get dizzy, I feel like im on some weird drug etc.

I had a draw on friday.

Totie,

when were you diagnosed?  bruce

[Totie]

This one will be really hard to answer because every reacts different to medication & doses. I did not have any trouble taking 200mcg for 10yrs, nor when it was decreased. I don't know if it is how I take mine or not.

I have always taken mine at 5am every morning, YES , without fail. I have an alarm set just for TAKING MY THYROID, then I go back to sleep & wake up at my next alarm for work. I do this regardless if where I am at or when I went to bed, it is just easier for me that way.  Maybe it helps me taking it that way and letting it into my blood stream without any body activity, I don't know, but I have never had any reaction to it.

[Brucergoldberg]

Sorry to bump this old post but I'm still trying to get clarification. Diagnosed with has his 8 mos ago.  Only taking .38 mcg.  I take .25 in morning and .13 at 1 pm.  I feel like I'm under medicated but have a hard time taking any more.


I'm still searching for answers.  I feel like I'm feeling worse every day.  

Also redheadaussie can you please update us?

[Brucergoldberg]

I wanted to know everyones opinion.....  If your body required a large amount of thyroid like 150 mcg but you only took 50 mcg,  should more and more symptoms disappear as you get closer to the 150?

Also why is it that some people can take 150 and feel incredible while others struggle with 35?

[Brucergoldberg]

Redheaded,  please keep us posted on your results.  I'm closely following your progress.  I'm confident that with time you will feel better.

Bruce

[Brucergoldberg]

Oh ok... I had all that done. Lol.....that's old school....  

[redheadaussie]

Just to clarify, I don't normally in the 3 years of taking my meds react to the thyroxine, it is only when they up the dose and my body THEN about 3 weeks later becomes like a cat on a hot tin roof. It is a good way for me to know I am overmedicated. But of course, they won't test me till the 6 week mark..grrrrrr.

I am getting the Anti TSH receptor antibodies done in 3 weeks at the time of the normal (bwaaaah haaa that word always cracks me up) thyroid levels, and also TPO antibodies (mine are still noticed 3 years after the TT!), anti-thryoglobulin ( to check for both Grave's and Hashimoto's, it can check for other issues too, not related to thyroid) and thyroglobulin ( to see if I have any cancer returned)  
I could have thyroid tissue remaining and the theory is that I am acting in my body as if I am doing what I did years ago, swinging from hyper to hypo constantly. Sounds funny when you don't have a thyroid but, there may well be some residual tissue playing silly buggers in there!

Anyway the anti TSH receptor antibodies (also known as TRab) will help show if perhaps I have Grave's disease on top of everything else! Since years ago I am convinced I had Grave's to start with and got left undiagnosed for so long, I started then to swing slowly toward Hashi's. They never tested me for Grave's as I wasn't presenting with hyper at the time of the "You fix me or else" showdown.

Both my TPO and anti-thyroglobulin antibodies are raised and still rising, so we shall see what happens in the next month.

[Totie]

Yep, everyone reacts different to meds. I had TT and was on Levo 200mcg for about 10yrs, than as I got older needed to adjust my dosage. I am on 125mcg now & have been for the last 5yrs.

I don't have any reactions to taking my med. I take it every morning at 5am with a sip of water.

[Brucergoldberg]

It takes exactly 30 minutes for the t4 to convert to t3 in our system.  I saw a doctor yesterday who thinks that my thyroid is still in the dying off stage and sputtering out.  I told her how whacked out I feel 30 minutes after taking the levo.  She started me on a regimen that includes splitting my dose in half, taking with food so it doesn't hit me as hard, and taking a small dose of beta blocker to help with the pulse/ blood pressure spike the same time I take my meds.

So I just too 12.5 levo with a boiled egg and a .20 propranolol.

The thing that now concerns me is that redheaded Aussie does not even have a thyroid and cannot take the meds.


Redheaded can you explain what your test is for?

Deb - can you explain what your test means?


Thank you

[Smilerdeb]

okkkk...didnt show again.
Positive ranges are 0.1 - 5.0. Negative 0.1 - 1.5
Lets see if this works this time

[Smilerdeb]

Sorry why rest didnt show up....
Negative - 1.1 -50

As you can see...mine was most definately positive. with a reading of 4.9

[Smilerdeb]

I had my TSH Receptor Test done at diagnosis of Graves.....then again 6 months ago.

Here are my results:

BEFORE RAI March 2007
Result 4.9 IU/L

July 2010
Result 1.5 IU/L

Reference Intervals....

Negative  1.5 IU/L


This is basically another test for Graves antibodies and just how 'rampant' they are.
As I have Graves, I will always test positive but there is a big difference in just how 'rampant' they were at dx of Graves.

So yes..if antibodies are high...they will attack anything they see as 'foreign'.

[redheadaussie]

Hi Bruce, Just to let you know, I have been increased by 25mcgs 3 weeks ago, and am noticing the fact I get the shakes and feel super jittery about 3/4 of an hour after taking my thyroxine.  I am one of these weird people who seem to react to the slightest dose change.
I am noticing the 'crashing' effect only a few hours later too. Bleurgh!

The thing my endo and I are learning is (in patient terms) that many people have anti-bodies to thyroxine in the first place. Taking the medication which is artificial only makes the body react even worse!
Maybe you could ask for a TSH receptor antibodies test. I am having mine done in 3 weeks and will let you what pans out of that!
Feeling for you Buddy! Hang in there!

[Smilerdeb]

Forgot to mention Bruce.....I am on 62.5mcg Thyroxin 6 days a week and just increased to 75mcg on a Sunday due to Prednisone bringing my FT3/FT4 down.

So as you can see...everyone is different and I am 2 1/2 years post RAI and TT.
Not everyone is on a T3 med or a high dose of T4.

We ALL have different DNA......thats worth remembering.

[Smilerdeb]

Have you tried taking the T4 med at night?

There are a few people here who take their T4 at night instead of the morning.
I have tried BOTH and went back to taking the T4 med in the morning because of convenience.

Have you ever thought that you may have a medication phobia Bruce?
Years ago (after many episodes of anaphalaxix from medications) , I became 'phobic' about any medication I had to take.
I was scared that once I swallowed the med...that my tongue and mouth would swell up.
This was also the case when I first started Thyroxin after RAI.
So my Doctor allowed me to go to his surgery, take the Thyroxin and sit there for up to an hour to make sure I wasnt allergic to it.

As it turned out...it seemed that as soon as I took the T4 med, I would go through an anxiety phase and have a panic attack.
It wasnt from being allergic to it....it was a Phobia.
That phobia is now long gone and it eased my mind that my Doc allowed me to get through that 'phobia'.

Also dont always blame the meds for the 'symptoms' when in actual fact , it could be that you are not taking enough or the meds havent been in your system' long enough.
To really get into your system...the T4 med has to at least be in your system for 2-4 weeks before symptoms will subside.

No i dont think anyone here is mental.......but it is worth trying.
Just the support knowing that help is close at hand (Docs surgery) should you need it , may be the answer you have been looking for.

I wrote about the phobia I had a few years ago here.

Just a thought...........

[Brucergoldberg]

.10?   That's exactly what I get.  Don't let them tell you it's all mental.  Maybe it's because our bodies are trying to get used to it?

[smalltownprncss]

Hi there, Bruce.  I was just recently diagnosed with Hashimoto's and actually had a total thyroidectomy the end of August.  I was prescribed .10 levothyroxine, and have found that I feel good before taking it, and then am groggy and sleepy for about 3 hours afterward.  I am not sure if this is the correct way to feel, but my endo assures me that I am still adjusting to the medicine, and that I am just extremely hypothyroid.  I  have another appointment at the end of the week, for 6 week follow up, and I will bring this situation up, again.  I will keep you posted on what the Dr. says.  Good luck!
Michelle