Frustration time: Hi everyone...i am currently on... - Thyroid UK

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Frustration time

Joell profile image
4 Replies

Hi everyone...i am currently on 50mcg levo and was told by the endo in summer to arrange a further blood test through my GP after 3 months on this dose but he didn't need to see me again. Had this a few weeks ago and despite asking at the time for them to test my T4 and T3, the lab results came back with just the TSH. ( I posted the results on here, but pointless really without the full details ) So I spoke to the (friendly) receptionist regarding me having to book the test again to include the full thyroid panel and it was arranged for this Friday. Annoying, but at least only a setback, I thought. HOWEVER...this week i got a phone call from the other receptionist ( Cruella de Ville) to say that she had cancelled my blood test because the doctor had looked at my latest TSH result and my thyroid is , yes you guessed it, 'in Normal range' and T4 and T3 do not need to be tested. She said two doctors had checked the results and agreed this. I then asked for an appointment but the only thing available before next year was a Telephone appointment. So I am speaking to the GP on Monday. I am sick of being fobbed off and I don't understand why the endo didn't carry on seeing me until he thought I was on an optimal dose. So i am considering asking to be re-referred to the endo, even though he was a bit of a let down. The GP is not interested in my symptoms, just the TSH, and it may not be worth the effort but I am hoping to try ONE LAST TIME to explain why I need T4 and T3 testing to get on the right dose. What I would like to ask all you helpful, knowledgeable people is this....

If there is ONE link or paper ( out of the many ) which has been written by a trusted professional, which someone in my position can refer the GP to , to try to make them understand that its not just about the TSH...which one would it be?

That is my first plan which, honestly, I am not banking on being successful. If I don't get any help from the conversation on Monday, I have decided to go straight ahead and self medicate as I am sick of going round in circles for two years..not being able to sleep, getting bigger by the day, and all the other stuff that's not going away. I've read so much about NDT being better than levo if you are self medicating and to be honest I don't have much faith in what the levo has done so far. I did actually purchase some Thyro Gold on the internet as I was getting so frustrated with waiting for over a year for the Doctor to listen / do repeat blood tests and finally refer me to the endo but I didn't end up taking it as it arrived just before my endo appointment and I thought I would try the official route first. Has anyone had any experience with Thyro Gold? is it a form of NDT? And if not, could I ask people's opinions which is the best /most natural form of NDT to choose ? And then how and where to get it? Sorry this is so long with so many questions but I've had it with feeling like crap and need to take positive steps to help myself.

BTW if GP refuses to do T3 and T4 tests I will get them done privately through bluehorizon recommended on here before I start any other medication.

Any advice and help is really appreciated. Thanks.

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Joell
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Clutter profile image
Clutter

Joell, Your practice obviously has an agreement with the lab that TSH testing is sufficient. I doubt you'll persuade them otherwise and I think you'll need to order private tests to get FT4 and FT3 tested.

You may be able to persuade your GP to increase dose to see whether symptoms improve when TSH is lower (still within range) and FT4 and FT3 higher. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk for a copy of the Pulse article if you'd like to show it to your GP.

ThyroGold is bovine NDT which contains T4 and T3. Email Tammy Lowe naturalthyroidsolutions.com... to find out how much active ingredient is included in 150mg and 300mg tablets to estimate how much you should take.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Joell profile image
Joell in reply to Clutter

Many thanks for replying Clutter..i will do all the above.

Hi, I would contact the Endo's secretary if I were you. Tell them that you have been refused the test that was ordered. Your GP is going against their treatment for you.

Best of Luck .

Joell profile image
Joell

Thanks Mango.

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