Can anyone tell me if .7 TSH is ok as my last endo wrote to GP to suggest my TSH should be as low as possible ie 0 ideally.

[nezzykins]

Can anyone tell me the differerence between A TSH of point 7 and 0.7 please? Why is no-one concerned or testing my T3? Has it anything to do with past RAI 6 yrs ago? Im feeling confused by all of this. Its a mine field in my brain. Just looked at my Tsh from print out of my blood results and its 0.07!!! NOT POINT 7!! I BLOODY WELL GIVE UP. Seems like the only one I can trust is ME!!!

[shambles]

Hi Nezzykins, do you have the range? Normally you would see something like 0.55-4.79 range?

As far as your Endo suggesting a low TSH or suppressing as much as possible, that will be related to your eyes I think. It is important for your TSH to be suppressed as much as possible whilst your eyes are in the active phase. My TSH is currently 0.01 (0.55-4.75).

By the way did you get your MRI results in time to discus with your Ophthalamogolist?

[nezzykins in reply to shambles]

Hi shambles. MY MRI was fine apart from fatty deposits at back of eyes. im in the process of asking for my medical notes and getting a print out of All my bloods since diagnosis. I will be able to tell you what the range is when I get these things back. At the moment. I have a deep seated fear of Doctors since my mental and physical crash at the beginning of January this year. As soon as I have this range in my hands, I will post it to you? Since taking Quetiapine, all the stuffing has been knocked out of me. I feel like I have become a different person. I dont know myself anymore. I am normally an assertive person but now I don't recognize who or what I am anymore. Lynne x

[shambles in reply to nezzykins]

You know you have to tell yourself every single day when you wake up, 'I'm doing good' and give yourself and pat on the back.

This disease is unbelievable to deal with and to understand. Put that with the fact that you rarely get the right diagnose or medical support, it's not easy all. But you will get the help and guidance here to put back on the right path. There's no magic wand but a work in progress.

You are doing brilliantly. You are sourcing and doing MRI's, going to hospital and talking to strange consultants, constantly sourcing information on your illness to empower yourself. Is it any wonder you do not recognize yourself?

There will good and bad days but hopefully more good than bad

Good work asking for your labs by the way.

[nezzykins in reply to shambles]

Hi SHambles. Went and asked gp practice whether I can have a print out of all my bloods and ranges. The answer was " you can only have the last 3 months. Ive also found out which member of staff I will need to make appt with, and then I will be able to select which consultant letters to print out for myself. IM still waiting my next ophthamology appt with consultant, for a review of all tests ( eyes, bloods and Mri). After this appt on the 8th april, I can then move forward with where I go next. Ive joined thyroiduk.org and bought the thyroid pack which is full of info re specialists, nutritionists etc and then hopefully find someone who can really help. I must be feeling better than in January as I could never had been able to do all of this. I still think its the quetiapine that caused the melt down and I have found some research about a patient with Graves, had the same thing happen to her from quetiapine. Thanks. Lynne x

[Clutter]

Nezzy,

Post thyCa my TSH is to be suppressed <0.1 It was undetectable at one point.

If you convert properly your FT3 won;t be affected. Labs don't seem to test FT3 until TSH is suppressed under 0.3 I think.

[nezzykins]

Aha. Thats why. I wonder do they wait until your almost dead first? It seems that way to me at the moment x

[Clutter]

Not testing FT3 isn't the same as waiting for it to fall below range, although it's hard to see how it can be prevented unless it is tested. You seem to have had a dreadful time this year. I hope things start looking up for you soon x

[nezzykins in reply to Clutter]

TY clutter x

[nezzykins]

can anyone tell me what the mathematical difference is between point 7 and 0.7 please. my health authority has skipped the 0 to putting point 7. This i don;t get. Any mathematicians out there. will post the last result with the ranges soon. x

[Clutter in reply to nezzykins]

Nezzy, 0.7 is the same as .7 x

[nezzykins in reply to Clutter]

Thanks Clutter. I wonder why the labs changed this for no reason I can think of, apart from causing more confusion? Lynne x

[wombatty]

You folks in the UK are fortunate if your doctors try to get your TSH as low as possible. In the US, there is so much concern about messing up your calcium and thus causing heart problems that many doctors prescribe T4 doses (I don't think T3 is commonly prescribed in the US) to keep your TSH in the high-normal range. With Hashimoto's, a TSH in the "normal" range can have serious consequences. The idea in treating Hashi's is supposed to be to keep the thyroid gland dormant so the immune system ignores it. If the TSH is too high, the thyroid becomes active and begins to produce its own T4, and the immune system "notices" it and goes on the attack. Then you can get on the low-high-low rollercoaster as parts of the thyroid die, then remaining cells divide to compensate, with the consequence that your T4 and TSH rise and fall and rise....

At my recent test (early Feb) my TSH was 5.4 (normal range 0.4-4.5). My internal medicine MD said he'd leave my T4 (levothroid) dose at 125 mcg and retest in three months. My husband had been insisting since early Jan that I was developing a goiter, so I went back to the doctor. When I asked him to palpate my thyroid, he looked at me oddly, then came at me face on (not from behind) and clumsily put his hands on my neck; it was obvious he did not know how to do it! I requested a referral to an endo. He wanted to refer me to a guy he always used who isn't board certified in endo and has a reputation of being a jerk. I insisted on another endo I'd researched. He said he'd send her my results but would not yet refer me. He then ordered an ultrasound, which came back (according to him) normal; he then said he would not refer me to the endo. My insurance doesn't require a referral to see a specialist, but the endo practice does. I don't know whether the internist's sending the test results was interpreted as a referral or if the endo requested a formal referral after receiving them, but I received a letter saying I have an appointment April 1 and later a copy of the endo's letter to the internist thanking him for his referral and notifying him of my appointment. When I'd called the endo's office early on, to ask whether they'd got my test results and to ask how to make an appointment, a snippy receptionist had informed me that no, they had not received the results, and that the doctors would meet once they had the necessary information to decide whether to accept me as a patient. I can only assume that a TSH of 5.4 rang some alarm bells for them. As all the doctors in the practice attended med schools in their own countries, outside the US, perhaps they don't have the anti-T4 prejudice of most US doctors. They're also all women, so they may actually listen to me and care about my concerns. I've requested that both the testing facility and the radiology dept where I had the ultrasound send my results directly to the endo; I've lost trust in my internist even to be honest with me and the specialist.

[puncturedbicycle in reply to wombatty]

I'm afraid it is not normal practice in the UK to keep the tsh low in the range. We frequently have to fight for it.

Ideally treatment should be symptom-led as some people feel just as bad with a suppressed tsh as others feel with a higher tsh. The best treatment is the one which makes you feel better.

[wombatty in reply to puncturedbicycle]

I'm not sure I know what "better" would feel like. The only times in my entire life when I've felt like a normal person were during my first pregnancy (Something may have crossed the placenta from the baby to me, as my daughter, now 43, is and has always been a very energetic, active person.) and during a short time when I was taking 300 mcg T4 daily. Having energy to actually DO something was wonderful; being able to think on my feet, instead of having to go off and let ideas percolate through my mind, was marvelous. When my T4 dose was reduced to 100 mcg, I felt like the fellow in "Flowers for Algernon" watching himself lose all his mental gains. But the low energy didn't come on with the Hashi's. I've been this way since early childhood. (My mother said I had two speeds: slow and stop.)

[puncturedbicycle in reply to wombatty]

It sounds like what you're describing - how you felt when you were well - is a pretty good benchmark of 'better' to aim for.

It sounds like you may need to change your doctor and find one who will aim to make you feel well. Are your t3 and t4 being tested? TSH is a pretty poor indicator of wellness.

[wombatty in reply to puncturedbicycle]

Free thyroxine (FT4) is 1.6 (range 1-2). No T3 test, no antibody tests, and none of the others I find mentioned here (ferritin, B12, D, etc.). I'm seeing an endo next Tues (April 1). I hope she knows what she's doing.

[Clutter in reply to wombatty]

Our doctors are discouraged from prescribing T3 and NDT. It's luck of the draw whether or not you get good thyroid treatment from GPs and endos in UK as well as USA from what I've read.

[nezzykins]

After getting a print out of my past 3 monthly bloods, I was shocked to find that my TSH was 0.07 and not POINT 7, as I was told by nurse practitioner! Im fuming! Who can trust to give me the right info if I can't trust my own GP practice. ME! Thats who! Grrrrr.