TSH not decreasing

[spudmonkey]

I've been on levothyroxine for a little over a year, my FT4 is in the mid 20's, but my TSH wont drop below 9. Since my last dose increase my TSH has risen to 11. My Dr upped my dose to 125mg, as a last ditch attempt to suppress my TSH. Why isn't my TSH lowering?

[goolarra]

Well, we're a little better off here, but T3 doesn't get the respect it deserves in the States, either.

A lot of your symptoms do sound hyper.  In fact, after seeing them, I'm wondering if you're not just simply overmedicated.  Above, you said, "I still feel hypo, my symptoms have remained the same. The only change I noticed when I started the meds was that the sensation of having something stuck in my throat has gone."  Were your symptoms really the same before starting meds?  

I'd definitely spring for the private bloodtest.  Your doctor sounds somewhat sympathetic, so faced with the facts, she may be able to act on them.  If I were you, I'd repeat FT4 and TSH in the same blood draw as the FT3.  Also, be sure to test for both thyroid peroxidase antibody (TPOab) and thyroglobulin antibody (TGab) since some of us with Hashi's are postive for one, some the other, and some both.  

[spudmonkey]

Thank you both for the replys, I'm definately gonna jump onto getting SpaTone liquid iron. The Ferrous Sulphate I'm using is the cheepest, nastiest brand out there.

My Dr didn't seem alarmed by my T4, nor did she share with me why I still felt Hypo. I think here in the UK T3 is a dirty word, our NHS Dr's are locked into following certain guidlines. I've talked to her about T3 testing before, and she seems as open as a NHS Dr could be, but she won't or can't order the tests. You think it's worth me coughing up the cash for a private bloodtest to test for T3 and hashi's and then showing the Dr the results?



I never thought to look into Hyper symptoms, I have the following symptoms from some random list.

nervousness
irritability
shaky hands (very slight tremors)
panic disorder (I have agoraphobia)
muscular weakness in upper arms
insomnia
racing heart
waxy skin
diarrhea
coarse dry hair
fatigued
pains in wrist and ankles
restless and anxious
puffy around eyes and face (gone since taking levothyroxine)
forgetfull
swollen lymph glands
jumpy eyes
tinnitus
acid reflux
sweating (when feeling hypo I'm bone dry, no amount of physical exertion can make me sweat)
severe menstral cramps
I don't gain weight (but I can't lose it either, super frustrating)

A lot of these are Hypo symptoms too, are they're any core hyper symptoms I'm missing?
Definately seems like I swing between hyper and hypo thyroid, I have asked my Dr about hashi's before but she was unconvinced, she was pretty adamant that it was hereditary. It's odd, I'm the only one in the family that has a thyroid problem, but autoimmune is rife.

You think it's worth me coughing up the cash for a private bloodtest to test for T3 and hashi's and then showing the Dr the results?

[goolarra]

I just googled UK ranges for FT4 and saw that they are approximately 10-24.  So, if yours is mid-20s, you are at the very top of the range (or maybe a little over?).  It would seem that you are absorbing the meds just fine.

With FT4 that high, and since you still have hypo symptoms, you almost certainly must be a slow converter.  I know NHS doctors are reluctant (okay, that's an understatement) to order FT3, but how does your doctor explain your high FT4 and remaining symptoms?  Low FT3 and the need for T3 supplementation seems to be the clear answer.  High TSH, in and of itself, causes no symptoms unless FT3 and FT4 are low at the same time.

If you have Hashi's, your thyroid could be working in fits and starts as redheadaussie suggested.  However, I would expect your symptoms to swing between hypo and hyper more if that were the case.  Are they consistently hypo?

[redheadaussie]

Try getting SpaTone liquid iron. I have terrible iron levels and found that when I was hypo my levels were atrocious. Found out years later I have malabsorption syndrome too, so even the ferrous sulphate didn't work. It is also a lot harder to digest and can give bad constipation. SpaTone comes in sachets and is a little more expensive but worth it.
  My levels even on ferrous sulphate were around 2.5 and should have been over 11. When I swapped to SpaTone went up to 22!  
  
  Many thyroid patients have low ferritin too.

I know UK doctors are just as bad as Aussie doctors, and I know the NHS is worse than our Medicare. So can empathise on the fact they won;t do certain tests, unless you are losing 4 limbs and have your head spinning!

I have been having issues with my TSH rising too, then taking the increase only to have it fall slightly then go back up again. You may well have a thyroid that is having fits and bursts at trying to regulate itself, as in Hashimoto's disease. As goolarra says the whole hormonal interaction can be thrown off by many factors.

Hopefully your ultrasound won't show anything too bad.

[spudmonkey]

No idea on the lab range for the T4, my results never come with ranges. I still feel hypo, my symptoms have remained the same. The only change I noticed when I started the meds was that the sensation of having something stuck in my throat has gone.

Before I started taking meds my T4 was very low and my TSH was 16, every couple of months I would get an increase of 25mg, gradually my TSH fell, I even got it to 7 with 75mg, but then it jumped back to 9 and it's stayed between 9 and 12 since.

I've never been tested for T3, getting a NHS Dr to order that test is next to impossible, nor have I been tested for hashi's. I've never had thyroid cancer.

For the year I've been getting treated for my thyroid, this week was the first time a Dr bothered to feel around my thyroid. I've been booked to have an ultrasound, so thats something at least.

I'm not sure if this means anything, but I have terrible absorption. I'm on about 600mg a day of ferous sulphate and I'm lucky if my ferritin goes up by 4 in the 3 months between bloodtest.

[goolarra]

What's the range on your FT4?  Do you have FT3 results?  Do you still have hypo symptoms?

TSH is a pituitary hormone, and any number of factors in the thyroid/hypothalamus/pituitary feedback cycle can make it unreliable.  

I went hyper with a TSH of 20 (no, I did not forget the decimal point!).  I have a pituitary issue in addition to Hashi's.

Have you had thyroid cancer?  Is TSH suppression an issue?