Normal TSH but still having symptoms.

[poppyrocket]

My GP won't request other bloods as my TSH is within normal range. This is despite a request from my private paid Endocrinologist! I was diagnosed with Graves last year. Symptoms are largely kept at bay but every now and again they flare up and I feel dreadful during that time. Do you all agree that my GP is wrong?

[Hidden]

I agree (I'm no doctor 'tho) it does tend to be the case that only TSH is checked with us Hypos (if in range labs won't do others unless ' told to) but Graves is a different matter & a high T4 level is dangerous. Can your endo not do the test? Even Dr Toft said the TSH test wasn't enough & T4 should be tested too. How were you diagnosed with graves? J x

[shaws Administrator]

Get a print-out of your blood tests the doctor did and post them complete with the ranges and someone will comment.

Are you on medication for Graves?

[Hidden]

Hi there

Your GP is very wrong indeed! TSH is a useless indicator in Graves disease as you have TSH receptor blocking antibodies and the TSH can remain suppressed even after your T3 and T4 is in the normal range - some people's TSH remains suppressed long after definitive treatment. You should be monitored every 4 to 6 weeks with full TFTs. If you have had a rise in TSH after starting carbimazole that is a sign you are over treated. Carbimazole is also very toxic to the liver and you should be having regular blood counts and liver function tests to check all is well. Elaine Moore's website is a great source of info and I've posted two links below. I disagree with the administrator - a high T4 is not that dangerous but a high T3 is - I had very very serious Hyper (graves) and my T4 never went out of range but my T3 was very high.

See here for this:patient.co.uk/doctor/hypert...

"TFTs are repeated every month and the dose altered according to the T4 level. TSH may remain suppressed for months despite the T4 coming into the normal range and is, thus, unreliable. Once the patient is euthyroid the dose of carbimazole is reduced until the patient is on the lowest amount necessary to maintain the T4 and T3 within the normal range."

gpnotebook.co.uk/simplepage...

cks.nice.org.uk/hyperthyroi...

Perhaps you could also give your GP a copy of Colin Dayan's paper in the Lancet on how to interpret thyroid results - he highlights what results for people in treatment for Graves look like.

iccidd.org/cm_data/2001_Day...

Rebecca

x

[Kitten-whiskers]

Hello Pollyrocket,

Your GP is certainly wrong, as they often are with this condition. They really have no idea what we have to go through and never listen to what we say to them. I would suggest if you want to go privately that maybe seeing Dr Peatsfield

or maybe reading his book - that hits the nail on the head, it is full of information including Graves along with a treatment plan and why blood tests are wrong.

[tilly83]

Hi Poppy,

There is some brilliant advice here.... same happened to me they just did TSH and said in range. I went back to GP via phone and said endo wanted other levels as I wasn't on block and replace but up and down titration of carbrimazole. Had test again. This time I've booked and asked for other tests including ferritin levels, B vits, antibodies and D vit.... get the nurse who takes your blood to write it down. It was a good job I did as my T3 fallen a lot and am off carb for a while until results of next test in. If you don't feel confident to do this yourself get a friend who will fight your corner (in charming way!) to do it for you xxxx

[Hidden]

PS - I would not recommend Dr P for HYPER - he's great for hypO and I see him post TT but not for active Graves ....

[Hidden]

f *you* think he is wrong, offer to pay for them yourself. I just did. I've ordered the complete blood works for thyroid. It cost me just over £100 and I consider it an early Xmas gift to myself . If you us a Thyroid uk code, you even get £10 off..bluehorizonmedicals.co.uk/s...