Question of the Month - April 2013

[Barb135]

This month’s question:  What thyroid replacement hormone are you on? Have you found one that alleviated your symptoms? How many different meds did you have to try before your symptoms were alleviated?  Do you plan to stay with your current medicine or try something different?

There are a lot of different thyroid medications on the market these days ranging from generic levothyroxine to compounded T3/T4 combos. Obviously, they all work for some, but no one med works for everyone.

There are no right or wrong answers; just what has worked/is working for you.  

[dgmootry]

Well over a year ago last month, I had RAI which was suppose to kill my thyroid, it did partially, I went into hypo thyroid, so my doctor gave me I believe it was 100 Levothyroxin and that was waaaaay to much, I felt horrible, I had read that name brand thyroid medicine was more accurate, so I asked to be put on a name brand, which they changed to levoxyl 75 still too high, went down to 45 I believe. I still had weird sinsations thru my body when I took it, plus I felt like I was looking out the looking glass if you know what I mean, life felt weird. And I retained water real bad and my sleep was way off, I'm a real good sleeper, even when I was hyper. Well I asked my doctor to switch me to Armour I felt it was more natural, Ive been on it for almost 7 weeks, I was on 30 which wasn't enough my labs showed hypo and my skin was very dry and nails brittle hair dry and water retention, so i've been uped 15mg more equals 45 now, and this is my first day taking it, and I feel pretty good, my joints don't hurt as much and fluid seems a little less, hopefully it will all improve. I figured if this Amour doesn't work out, I will look into Thyroid by Urfa in Canada, it sounds even better, since they don't use white coloring or somthing, alot less additives. The only draw back is I don't know if my insurance will pay, and also it sounds like its shipped from far away, can't remember were the man said its harvisted from. I was concerned about Temperature change in travel if this would mess with potency, The Pharmisyst I talked with in Canada said there is no problem. Well thats my take on all this, I really like this site, had it not been for it, I would most likely still be on Levothyroxin and in HELL! thanks everyone

[EFrahn]

Yes I do know that the med is for life...but  one can only hope
With all the advancement in the medical feild :D

And I dont want to mess with a good thing.

[Ericamegan]

Hi, I had RAI for Graves' 3 1/2 years ago.
I started on 75mcg synthroid and worked my way up to 150mcg synthroid. I continued to have many hypo symptoms, so I asked my dr if we could add cytomel.  She agreed to add 5mcg(split twice a day) and reduce my synthroid to 137. I saw much improvement after this change, but after a few months, the hypo symptoms reappeared. We then increased cytomel to 10mcg, (split twice a day) and reduced synthroid to 125.  I felt better, but over time I started with the hypo symptoms again.  My dr reluctantly agreed to increase the cytomel to 15mcg. Even after this increase, something wasn't right and my dr pretty much fired me.

I switched to my current dr last April and she was open to desiccated thyroid or synthetics. She found I had high Reverse T3 and switched me to 120 Armour(60 in the morning and afternoon).  I gave this switch about a month and started feeling even more hypo.  She had me increase to 90mcg in the morning and 60mcg in the afternoon. That's the dose I've been on for the last 11 months and I have been feeling great for awhile.

It's taken a lot of tweaking to find the right dose. I still have issues with TED swelling and have read that desiccated thyroid can cause worsening of eye symptoms in some people. But, I am afraid to switch up anything at this point, because I am finally feeling normal again.

[Barb135]

If you have Hashimoto's you won't be able to get off the med, because Hashi, eventually destroys thyroid function so it no longer produces any hormones; there's nothing you can do to stop the destruction and if your doctor says there is, s/he's lying and only trying to get your money.  

You can't live without thyroid hormones.

[EFrahn]

Hi.
I was diagnosed with hashimotos in late 2009 after my second child.
Im on the low dose of Eutroxsig (its australian brand) once a day. And it has worked for me
I also see a natropath as I felt like I could be doing better but I kept being told that my levels are fine on the dose.
Since the naturopath I have been so much better and also on gluten free (which i read recently is good for ppl who have autoimmune problems)
And have notice a massive change.
I plan to work with my naturopath and look at other things to get off the medication but for the time been im happy doing what im doing.

[ChitChatNine]

Synthroid name brand.  Currently on 112mcgs up from 75, 88 and now 112mcgs.  I have no side effects and it works well for me.  Am lucky to be one without any issues as long as the dosage is correct for me.

Am going to stay with it as-is. Been on Synthroid since 2007.

C~

[goolarra]

The three cofactors, with weight, in determining initial dose are:

Over 50 years of age
Extended period of hypothyroidism (more than a few months)
History of heart arrhythmia

Dosing directions (they're on Synthroid's website) say that starting dose should be 12.5-25 mcg if ANY of the above applies, increasing as tolerated.

All three applied to me, and my doctor started me on 88 mcg...thought I was going to die!  LOL  

I'm on T4 (Levoxyl until the recall) and have been for several years.  Due to the initial (too) high dose, my symptoms went away really fast (within a couple of months I was asymptomatic) and never returned even though I had to back down to 25 mcg and then increase very slowly over more than a year to 75 mcg.  

While increasing, I took all the "standard" doses, and I split and combined so I could increase in even smaller increments.  I've taken generic, Synthroid and Levoxyl at one time or another.  My doctor's nurse would give me samples to make the combos I needed, so it was whatever she had handy.  For ME, there's absolutely no difference among them.

At one point, my doctor added T3 to my meds...for no good reason, just because.  Since I was already asymptomatic, it was hard to tell what it did, but I only continued it for about a month.  Luckily, it did not exacerbate my arrhythmia.    

[courtney48]

The initial dosing takes into account the person's weight, so my was about right. Dosing guidelines do state though, that if secondary factors (such as heart rate maybe, can't recall specifics) are involved, low dose/slow titration is indicated.  I do feel fortunate, but in some ways am also waiting for the other shoe to drop, when I don't feel so well and have to fiddle around with dosage.  

[Barb135]

Sounds like you're one of the lucky ones, to hit the right med/dose right off the bat. That doesn't happen very often, especially starting out at a dose of 100 mcg, which is a very high starting dose.

Flyingfool - actually, the good thing, if there is one, about having Hashi is that you know eventually, the thyroid will die off and stop producing, completely.  Then your wife's levels should start staying steady and you won't have to keep changing doses so often.

I hope the new regimen of taking the T3 3 times/day works to keep her levels more steady.  Hopefully, the endo will give her an increase in the T4 med before too long.

[flyingfool]

My wife has been on generic T4 for many years.  I think almost always under-medicated. Starting out with 25 mcg and is currently taking 137 mcg.

In late November of last year she was finally able to get generic T3 added. This after going from several Dr's to finally switching HMO's and Dr's and finally a referral to an endocrinologist.  It took a several page introductory letter to the endo.  Followed by a several page response to his letter after the first visit and FINALLY that resulted in adding 7.5 mcg of T3.

At first the dose was 5 mcg of T3 in the morning and 2.5 in the afternoon. This had the best result so far in symptoms for my wife.  Just yesterday he switched the dose to 2.5 mcg 3 times a day. So still remaining at a total of 7.5 mcg a day but just trying to level off the dosage of T3 throughout the day. Too soon to tell if this is a better solution for her or not.

It may have been possible for my wife to have not needed the T3. But no Dr ever would prescribe enough T4 medication to see if there was enough conversion or not.  The addition of the T3 has cut to the chase so to speak.

I still believe that she may need a further bump up in her T4 dosage and thus result in a higher FT3 level but we are going at this very slowly.

My concern is with her having Hashi's that we'll just about figure out the correct dose and then the Hashi's will impact and reduce the amount of T4 the Thyroid is producing and we'll have to start this cycle all over again.

So in summary, a combination of synthetic T3 and synthetic T4 resulted in the best solution to date although still working at optimizing the dose.

[courtney48]

I take and have only taken levothyroxine 100mcg. I had three symptoms of hypo (some hair loss, GI issues, dry nails/nails stopped growing) before being dx'd but the symptoms did not lead me to go to the doc, as they weren't bothersome enough to make me think something was 'wrong'.  That said, routine annual labs showed hypothyroidism and I started on the medicine.  I noticed resolution of symptoms within three weeks of taking the medicine.  My sleep has also improved since being on this med/dose.

[Barb135]

I was diagnosed with hypothyroidism in early 2008, by my primary care doctor.  I was started out on Synthroid and told never to take anything else…. So much for that; I didn’t listen and actually ended up leaving that physician because of the way he treated me!!  

Since then I’ve been on numerous dosages of Synthroid (ranging from 25 mcg to 100 mcg), then switched to generic levothyroxine (which worked better for me than Synthroid), then added cytomel and when Tirosint came out in May 2009, I jumped on that bandwagon and have clung tight. I am currently on 88 mcg Tirosint, along with 7.5 mcg generic T3/day.

It’s only been during the past year to year and ½, that my symptoms have all pretty much gone away and I consider myself euthyroid.  My endo has suggested that I switch back to generic levo, but I’ve resisted since I’ve done better on Tirosint than anything else, though at times, I’ve had to get “creative” with dosages to hit one that worked.

[Barb135]

The question "assumes" that everyone has gotten well, but even if you aren't quite there yet, we'd like to know about your med and how you're doing with it.