Hi Everyone

[Killacookoo]

Hi everyone, my name is Paul, and I hope you are all doing okay. I had Thyroid Cancer 10 years ago which ended with a complete thyroidectomy and radiation therapy. Though I have lived with this condition for a long time, my knowledge is lacking somewhat and I hope to educate myself. I should have done this 10 years ago, but life has a nasty habit of getting in the way so this is a case of 'better late than never'. I hope to speak to you soon.

[greygoose]

Hi Paul, welcome to the forum.

If you have the slightest question, don't hesitate to ask. But do post your latest blood test results, with the ranges, at the same time, because that makes it easier for members to understand your thyroid status.

[Clutter]

Welcome to the forum, Killacookoo.

You may find the pinned posts on Thyroid Cancer and Hypothyrodism under Topics on the right side of the page interesting.

[Killacookoo in reply to Clutter]

Hi Clutter and thanks for welcoming me. I'm going through the posts at the moment. All are extremely helpful. Thanks.

[shaws Administrator]

Welcome to our forum Killacookoo. How do you feel at present and what thyroid hormones have you been prescribed and the dose?

[Killacookoo in reply to shaws]

Hi shaws and thanks for the welcome. I'm taking 250 mgs of Levothyroxine daily. I had my surgery 10 years ago, in fact my first surgery was on the 26th July 2006, so nearly my 10 year anniversary. I've always felt different since having my Thyroid out but I've always carried on and coped the best way I can. I get what I call the shakes a lot and I always feel sick when I get them, but they usually disappear within an hour, but lately they've taken longer to get over. I'm going through the forums at the moment to see if anybody else is going through this and to see if there is a better way to cope.

[shaws Administrator in reply to Killacookoo]

The first thing to do is make an appointment for a new blood test.

The appointment should be the very earliest possible and fast although you can drink water. You should also allow 24 hours approx between your last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as that appears to be the only thing the doctors take notice of (and I think that's wrong).

Ask GP for TSH, T4, T3, Free T4 and Free T3. (He may not as they've been told FT4 and FT3 are unnecessary) and some labs wont if TSH is normal. If a person still has symptoms I definitely would but you can get those not done by a private blood test and we have recommended labs and a small discount if you mention TUK's code number.

I'll give a link and you can look at FT3 in particular.

thyroiduk.org.uk/tuk/testin...

T3 is the only active thyroid hormone required in our receptor cells, of which we have billions and our body needs sufficient for us to function.

I think 10 years is long enough to suss out whether you are back to 'normal' health so, if not, it's time to look further as you are doing.

hormonerestoration.com/Thyr...

[Killacookoo in reply to shaws]

Hi shaws

Thanks for sending me those links. I feel like an absolute dullard that I haven't looked into this sooner.

My GP and endocrinologist told me that I only need my TSH levels monitoring so I took it at face value, after all they are the experts. I will certainly be speaking to my GP to do the T3, T4, FT3 & FT4 as well as another TSH test as soon as possible.

Thank you

[shaws Administrator in reply to Killacookoo]

Don't feel guilty as it has come as a surprise to all of us that doctors/Endos don't always no best when it comes to treating patients. Goodness knows how people cope when they don't have internet access.

The guidelines have made huge mistakes and it, unfortunately, has rebounded onto patients who once had faith in doctors. It seems to me the Endocrinology alone has failed immensely and thus many of us have lost faith and I got well only by Thyroiduk.org.uk set up by Lyn Mynott in a garden shed.

The problem is compounded by the fact that they do not listen to patients, take no notice of symptoms which used to be the criteria before blood tests and levo were introduced and prescribe anything else rather than a thyroid hormone for symptoms which appear or don't resolve with levo.

Previous it was symptoms plus NDT (Natural Dessicated Thyroid (NDT) hormone for a diagnosis. To take account only upon the TSH is another fatal flaw, in that it should only be a 'guide' not a 'positive' as it varies throughout the day. Since this forum began it has been very successful - if there was no problems that wouldn't have been the case.

Dont beat yourself up as we also took the doctors' advice and remained unwell. We can improve our health step, by step - slow and gradual.