Switched to T4 and need advice on what to do next; labs, etc:

[misscliocat]

Hey all!  You've all been so helpful and I wanted to post an update. 

The synopsis?  TT last year and started on 150 Levoxyl, added in T4, swapped for NDT and switched back to T4 as of 1/16.  I started at 125 T4 and 5 T3 but dropped the T3 as I really want to discern if I can convert.  So as of 1/29 on the combo, my labs were:

TSH 1.2  (.5-5.2)

FT3 2.1 (2.3 - 4.7)

FT4 1.0 (.8 - 1.8)

Not awesome so I upped the T4 to 137 and also changed to Tirosint.  So 5 wks in my labs were as:

TSH 2.2

FT3 2.3

FT4 1.3

I just started the 150 again and no T3 and have noticed a lot of the tingling I had on NDT and the combo have ceased, but still feel fatigued, still hair loss, and still bloated; I lost ten pounds on NDT (maybe too skinny as I had no appetite) but felt manic... but that weight loss was amazing.

To be honest,  I don't know if I just need to keep going with the T4 as this has been my first stint as an honest go since my TT or what. I think I'm converting since my FT3 is higher but not much.  But I've read that those sans thyroid don't tend to have a high T3 naturally but I just would love some insight.  Cytomel gave me mixed feels and I would love to know what others suggest or maybe since I was so non-stop prior to this that my body is telling me to add more.  I just need opinions, please...  thank you.  

[Ruthi]

Sorry, you have me totally confused. I'm in the UK, but I thought Levoxyl was T4?

And your figures are quite meaningless to me, except the TSH because there are no ranges.

[misscliocat in reply to Ruthi]

levoxyl is t4, but the range date in the parenthesis!  they're the same range for te following labs.  my apologies if confusing.

[greygoose]

Difficult to say how your conversion is because you Don't have much to convert. You really need and increase in something.

[misscliocat in reply to greygoose]

I agree...   I think I have a lot of room for an increase...  just so many optimal charts throwing me off but you're right.  Hopefully this recent increase shows an improvement even  though I'm yet to feel it!

[greygoose in reply to misscliocat]

Optimal is not a number, it is when all your symptoms have gone.  

[Hidden]

I am no expert on TT, but did you have it because of thyroid cancer? I have always heard that you need a suppressed TSH in that case.

I have autoimmune hypothyroidism so not the same diagnosis as you, but back when I was on T4 drugs only, I noticed that I needed my FT4 levels close to the upper normal range (1.7 or 1.8, ref 0.8-1.8) in order to feel truly well. Only you know if you feel better or worse when T3 is added to the mix, but to me, your FT4 levels look lowish.

When I was on T4 only, 200 mcg daily was the minimum dosage that allowed me to feel human, so I agree with Grey Goose that you most likely need an increase.

[misscliocat in reply to Hidden]

Thank you!!  I feel like I'm going too be someone that needs a lot more than I initially thought...  even after my TT they had started me on 150 but if it were to be by weight,  I should have been started on 112!  Maybe they knew something I didn't??  Are you on a combo now as well if I may ask??

[shaws]

Whatever dose you're on at present it isn't sufficient. Your TSH is rising and both FT4 and FT3 are at the bottom of the range.

You've been switching between types of thyroid hormones so I wonder if you haven't given your body a chance to absorb. It is not a quick fix unfortunately. I think it took me about 5 years+ to get to a stable dose. Blood tests are only a guide it is how the patient feels and relief of symptoms which is the priority.

I note you have had a TT and my personal opinion is that many who've had one might feel better with the addition of T3. Our body cannot function properly without sufficient T3 in our system.

(I am not medically qualified just have my own experience to go on. I am hypothyroid).

[misscliocat in reply to shaws]

Thank you!!  I know,  I've been so desperate to feel better and snap back to my old self and after much trial and error,  decided I'd give this one more solid go...  but you're right.  Ironically,  my doc said my FT3 was high and I was like, "uhhh, what number are you looking at?"  Ha, sheez....   I just upped to 150 so hopefully I see some progress...  I get anxious when tellling others about that dose and they are surprised by how high it is!  But guess everyone is a different number, huh...  thank you for offering your insight so much!

[shaws in reply to misscliocat]

If you aren't improving ask the Endo if you can have some liothyronine added to a reduced T4. 

Before the blood tests were introduced along with levothyroxine doctors prescribed upon the patient's clinical symptoms. The usual dose of Natural Dessicated Thyroid Hormones was between 200 and 400mcg daily.

One doctor who was taught before levo etc said that we were given too low a dose to get well and thus had continuing (or different) symptoms. The doctors are intent on keeping our results within a 'range' and if it is at the higher end we might be unwell for a long time but develop other more serious diseases. I don't think they understand that at all.

It does take a while to get to a dose or a hormone which suits us individually and we should be allowed to trial but aren't.

[misscliocat in reply to shaws]

I agree!  A friend was advising me how her Endo admitted that they don't take liberal enough leaps in medicine for thyroid and i believe it!

[Howard39]

I agree with Shaws my personal opinion would be to add in T3 as the levels are low but I was a little confused as to why you were altering all your meds often. Its does indeed take time for your body to adjust to different doses and dual T3 and T4. Some people have pituitary issues others absorption problems. Every one is different.

With so many variables your body needs consistency then a change if you feel it is needed. 

By TT I am assuming you mean Total Thyroidectomy? If so there is no reason why you cannot have both meds you just need to add in T3 slowly.

[misscliocat in reply to Howard39]

youre right on!  had thyroid cancer...  I did bounce around on meds because then I had no idea of what  to expect and felt so frustrated that I wasn't getting better at all...  now, much later, ha, I know...  I've been sticking with the Tirosint as its suppose to be absorbed better but these numbers are burning me out and j feel them.  I just got upped to 150 so maybe in the next month I can retest and see...  I've been on form of T3 since day and I probably will add some again but I'm hoping that my body can figure this out... I'm just confused by what levels are "optimal" now for someone in my position...  as I know you all get all too well!  Thank you so, so, so much for your feedback!

[misscliocat in reply to Howard39]

Agreed!  I want to try to give this new slate a go without T3 for once...  maybe after my next labs following this recent increase I can figure out what to do....  just want to get out of the hypo slump, you know?  

[shaws in reply to misscliocat]

Some people have something called 'Thyroid Hormone Resistance' in that the receptor cells need high doses in order to make patient better. Explanations of Resistance below:

web.archive.org/web/2010103...

[misscliocat in reply to shaws]

this is top notch, thank you!   I'm just so frustrated and worried and ugh.  not sure why I'm having a hard time with this... 

[humanbean]

For future reference :

When referring to prescribed thyroid treatment, Levoxyl, T4, Synthroid, Tirosint, thyroxine and levothyroxine are all the same thing - they are all levothyroxine. The only thing that might differ from one to another is the fillers and binders used to make the product into a pill or a liquid.

[misscliocat in reply to humanbean]

exactly!  hence the tiro I'm on because this far, I think it's absorbed better but we'll see!

[misscliocat]

So i just wanted to update.  

I was advise to raise my Tirosint to 150.   Had labs done three days ago and my numbers were as follows (the ranges are following the numbers, for reference):

TSH : 1.65 (.27-4.2) 

FT4:  1.6 (.8-1.7)

FT3:  2.35 (2.5-4.30)

TG AB: 15  0-115

My TSH lowered from 2.2 really fast during that time.  My FT4 went up by .3, however, my FT3 has only increased by .05.  And I feel like crap.  I don't think I am converting at all. At all.  It's been a short time but anyone have any take on this?  Thank you again.

[Clutter in reply to misscliocat]

Misscliocat,

How long had you raised dose to 150mcg before you had the blood test?

[misscliocat in reply to Clutter]

Not long, ten days.  I know that's too soon as it was a schedule appt, but I'm shocked how quick some numbers moved during that timeframe.  and- how my FT3 is not moving. at all. 

[Clutter in reply to misscliocat]

Misscliocat,

10 days is long enough for TSH to drop as it responds very quickly to dose adjustments, FT4 and FT3 take longer.  My FT3 results lagged several weeks behind TSH and FT4.

I notice you had thyCa.  Weren't you advised to keep TSH suppressed <0.1?

_________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[misscliocat in reply to Clutter]

I did have thyca, yes.  This doc said I'd probably feel better with a TSH closer to 1 but at 1.6 I don't feel comfortable with it.  I think if I were converting better that maybe it'd lessen it, too?

[Clutter in reply to misscliocat]

Misscliocat,

To get TSH below 1.6 you need to take more T4. 

[misscliocat in reply to Clutter]

in your experience, do you find having a FT4 almost at the top of the range troublesome?  just curious.  I think I need either 15,000 mcg of T4 or a lot of FT3...

[Clutter in reply to misscliocat]

Misscliocat,

 I found having FT4 very high over range very unpleasant but high in range was fine.  My FT4 is mid-range as I'm on T4+T3.

15,000mcg?  I doubt anyone could tolerate that.  You might need more than 5mcg T3 but I don't think you'll need lots.

[JS33]

You lost 10 pounds on NDT so it was unlikely you were hypo, how did you feel ?