Why is my thyroid level going up but tsh staying high?

[1123ayoung]

Hi everyone. Diagnosed hypo about a month ago. Got blood results today and my thyroid is improving but tsh still really high, anyone know why? I'm on 125mcg of levothyroxine. I feel I have more energy but I do feel all over the place mentally and miss judge my footing, forget everything, anxious, sore head. I'm on anti depressants (have been 8years) anyone else had these problems xxx thanks in advance xxx

[galathea]

It all takes much longer than a month to settle down.... You need at least 6 weeks to feel the full benefit of any dose increase...   Did they just start you on  125?   You must have been pretty  hypo if they did.        When you had your follow up test, did you  take meds before the blood draw?     ( a bad idea). And did you fast before the draw?     

What are your figures looking like now?

You are aiming to get your free t3 and free t4 into the top end of the range and tsh below 1.         When tsh is good the depression may go away.....

Fingers crossed

Xx g

[1123ayoung in reply to galathea]

Hey. I was started in 100 and doc put it up 25 yesterday. 

The endo called me and said they couldn't get a reading on my thyroid as it was so low and my tsh was 100. 

At doc yesterday all she said was that my thyroid is improving but my tsh level was still really high.

I never took any tablets before bloods and never ate either.

It's the headache and my balance I'm worried about but doc says it's all just until meds are right xxx

[Jazzw]

I reckon there's a good chance you've been hypothyroid for at least 8 years, but instead of looking for a physical problem they threw antidepressants at you instead. Getting a TSH of 100 doesn't happen overnight in most cases - your thyroid has probably been failing for years. Knowing what you know now about hypothyroid symptoms, do you recognise that you might have had it a long time?

If it has been a long time, it will take a while to feel better. It's good that your doctor's raised your dose to 125mcg - do you know what your TSH was this time? It might be that you'll need a few more raises in levo yet. 

Plus if you have been hypothyroid for a while, it's likely that your gut hasn't been absorbing nutrients as well as it should. There's a good chance you're Vit D, Vit B12 and ferritin deficient.  It might be an idea to ask your doctor to test these. Missing your footing is a thyroid thing - but it's also a low Vitamin B12 thing and it could be either, or both. 

[1123ayoung in reply to Jazzw]

Hey. Yeah I recon I have it it since having my 1st child (8 years ago) but I'll never know. It's frightening thinking of how many other mistakes docs are making but such is life.

Is it normal for my thyroid to be improving but tsh not to be? I wasn't sure if maybe my antidepressants were making tsh level not come down. I'm on 100mg of sertraline.

I really need to ask for a print out of my blood results next time. My kidneys are also getting monitored as blood showed a decrease in kidney function too.

I'll ask for the b12 etc at next appointment. I'll write those down so i remember lol. Xxx

[galathea in reply to 1123ayoung]

Tsh will lag behind......     None of this stuff is fast.......

G x

[1123ayoung in reply to galathea]

Thank you. Now I know it's normal I can relax xx

[faith63]

A TSH that high, could be a TSHoma.  A benign tumor that secretes TSH.  Just a though, what i would look into if it were me and not meant to scare you at all.  

[1123ayoung in reply to faith63]

Hi. do you know what the symptoms are? How would I go about finding out if I had this? Xx

[faith63 in reply to 1123ayoung]

pituitary.ucla.edu/thyrotro...

above link with all info.  

[helvella Administrator]

Some TSH tests are susceptible to interference from macro-TSH.

(macro-TSH is what is formed from an anti-TSH antibody attached to a molecule of TSH. It registers on some tests like a high reading of TSH.)

The standard thing to do is for a single blood draw to be sent to several labs which use different techniques/testing kits. They should be consistent but if they are not, then macro-TSH is a possibility.

[lemonem]

Hi 1123ayoung - I have exactly the same thing!! Diagnosed a month ago with a TSH of 100, only put on 50mg Levo, retested this week and TSH hasn't moved, still 100 but Free T4 has gone up a little (from 5 to 10.2). I also have kidney issues with a eGFR of 54 then of 60 which seems to be causing the Dr more concern. I have an appointment on Monday to discuss results and they've suggested an MRI scan. 

I expected todays results to bring my TSH way down, quite gutted as I've also been really good, not taking it with food, avoided all the foods they say not to eat. Symptoms have got so much worse since I started medication though - I've got headaches (weird ones in the back of my head), very tired, slow thought and speech at times and forgetful which is just annoying. I've also got carpul tunnel and peeling hands like they're sunburnt, all very odd. 

I'll let you know if I get any luck from my GP next week, but for now, you have my sympathy!  

[1123ayoung in reply to lemonem]

Hi. Thank you for replying. everything you have said is exactly what's happening with me. It's so scary  

I don't feel the docs are very understanding but doesn't help that I see a different one each time I've been. 

Is the MRI for your kidneys? I was given antibiotics in case of infection but doesn't seem to have made any difference. 

Yeah please keep me posted on your results and I hope you get the answers you need and feel a little better soon xxxx

[faith63 in reply to 1123ayoung]

mri of the head/pituitary would show the issue.   At least it should be looked at to rule it out, i would think.  I have had no luck with doctors.  it is very frightening to be alone with this.  Forums are what keep me going.

[faith63 in reply to faith63]

i should say, this forum.  others have been not so good.

[lemonem]

Hi 1123ayoung - my doctors just upped the levo dose from 50mg to 75mg. Said kidneys at eGFR60 are now normal so not doing anything with that. I started the higher dose on Tuesday, pushed through as I was away on a work trip but just crashed on Wednesday night. Have slept 15-16 hours a day since. I feel spacey, disorientated, headache, and just generally heavy and horrible.

How are you doing? Any better?

I'm thinking of going back to the GP on Monday. They're useless and I get a different one every time but I can't live like this for the next 5 weeks waiting for the stuff to kick in, and then they said it could take up to a year to get the right level - a year like this, I'll get the sack at work for starters!

I've also booked to see a nutritional therapist. I've no idea if it'll help but at least they could tell me what to eat to stop me getting any fatter!