how often should i have my levels checked???

[liz74715]

I am very worried - last jan2011 i had myh levels checked-GP said they were a bit high, but because i was feeling sluggish (lack of sleep due to another health condition- nerve pain) she didnt alter the levo i am on 150mcgxdaily.
fast forward to oct/nov 2011 and i have been feeling really unwell-extreme tremors(hands shaking so bad) feeling sweatyh, heart racing, like myh whole bodyh is going too fast, dizziness, almost blacked out, general agitation-horrible (& I have had anxietyh in the past & this was different)  went back to GP 30/12/11 as was feeling so bad told him myh symptoms he asked if I had lost weight-no gained. he wants me in for bloods this wk.  however since it mayh be due to the levo, i have since stopped them and the symptoms have gone.

Onlyh prob is GP didnt tell me to do this- should i go back on them i am at a loss as to what to do. HELP

[liz74715]

yes i agree i have got more info re the conditions & this site has been very helpful. i wasnt aware of the problems testing, ranges, antibody tests etc.

at the last test i had been off the thyroxine for 3weeks.
my TSH was 141                range    0.4 - 4.5

ft3 was 1.31   range 3.5 - 7.8

the above with hypo symptoms cold, temp 33.1, swollen face/eyes, gp instructed me to go back on thyroxine immediately 100mcg. been on them 12 days hypo gone, now hyper starting to emerge-racing heart, sweats, poor sleep, speeded up - what the ? is going on pls help yesterday i reduced down to 50mcg, today i have took 0. i dont know what to do next.

i did ask him for an antibody test - he said he would have to ask the lab-called me back yes that is appropriate-so went in to have the bloods done await result.
i am going to go back & try to get answers or a referral to a specialist?
also i can feel like my throat is swollen-gp has never examined or asked about that, so i will be discussing that also.
i am grateful to you for replying to me - thks pls keep in touch. i will be updating after my next gp appt. should have antibody results & tell  him about my throat.

is 141 for tsh a crazy figure or what???  esp for to go hyper after 12 days t4 100mcg treatment - you would think it is not long enough for there to be too much t4/t3 causing hyper or is there something else to explain the hyper symptoms?

what are the effects of that tsh floating around apart from it trying to get the thyroid to work- i just dont understand why i flip back to hyper sysmtoms so easily

[Sandy_MUM]

Came across this one as I am suffering from hyper and  was surfing net for guidance.
liz74715 - Hor are you now? Its a very old thread.

[gimel]

I am aware of how difficult it is in the UK to get adequately tested and treated.  I suggest that when you go in for the tests, ask which ones are going to be done.  If Free T3 and Free T4 are not included, then you should protest and insist that they need to be done.  Tell them that TSH is too variable to be a reliable diagnostic for thyroid issues.  Tell them that scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.  

Keep in mind the advice from one of our other UK members who went through the same kind of problems.  She was finally successful by doing
the following.

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

[liz74715]

so i will keep you posted re the next set of results & i will try to get the correct info re range etc.

thanks gimel you have been such a help to me.

but not out of the woods yet.

[liz74715]

when i went to get the bloods done i had been of the thyroxine for about 6days.
I got the results back last wk for tsh it was either 15 or 0.1.

the range was 0.5-3.9 or 10-19 so ia m not quite sure.

but he said it was normal. & if it stays this way then i dont have to go back on thyroxine. all my hyper symptoms have gone.
i told him i came off the thyroxine-he wasnt too bothered-he said right we will test again now-i asked him to do all the tests ie free t 3 etc he did look at me a bit strange tho but wrote them all on the bloods form. he said the lab might bounce it back. so thats where i am now. on nothing much less hyper symptoms.

[gimel]

From the way you said bloods, I wondered if you are in the UK, Australia, or New Zealand.   If so, that would explain part of the difficulty in getting adequate blood testing.  

So what tests are they doing?

[liz74715]

thks for replying.  not had thyroidectomy or rai. not been told what diagnosis was its been about 9yrs since being put on levo.  not really had much problem until lately.
i the moment i really dont know my body very well at all.

i just cant seem to work out what the hell is going on.

due to get bloods back this wk. so will make appt to sit down with him & hopefully he can explain things to me.

feeling very lost and confused-dont know if i am just depressed & anxious or what????
when i went to get the bloods done i took a list of things to test for & she just said oh its fine the test covers all of them???

why are some docs reluctant to test for the free t3????????

[gimel]

You won't be the first to make changes in their meds because of feeling so bad.  So yes, you should tell your doctor and explain why, and what happened as a result.  I don't expect that to be a major problem with your doctor.

Could you please give us a bit more of your thyroid history?  Looking at the dosage of meds, have you had a thyroidectomy or RAI?  If not, were you diagnosed with Hashimoto's Thyroiditis?  If Hashi's, then you should request an ultrasound test for your thyroid glands to see if there are nodules present.  With Hashi's, nodules sometimes form and leak hormone faster than normal, causing cycling from hypo to hyper.  

Also, it would be a good idea to get current tests done for the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4), along with the TSH they always test.  If the doctor resists testing for the Frees, then you should insist on it and don't take no for an answer.  Free T3 is the most important thyroid hormone test because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with symptoms, while Free T4 and TSH did not correlate.