Could someone explain better what this means?

[fuzzlebug]

dundee.ac.uk/medther/tayend...

In particular, the first box with TSH, does this mean between 0.03 and 0.1?

Also, could someone explain the 'informed patient preference'?

My thanks in advance for any help with this.

[Moggie]

Well I can explain the "informed patient preference" bit as its at the bottom of the document.

Informed Patient Preference

Some patients have made an informed decision to take a higher dosage of thyroid replacement than is required to maintain the TSH level within the reference range. This usually results in a TSH level of <0.1 or <0.03 mU/L. This is a risk especially in those with dysrythmias such as atrial fibrillation and those with osteoporosis. In such circumstances the informed patient’s decision is recorded and followed.

Moggie x

[shaws Administrator in reply to Moggie]

I think all these 'experts' know little. Two links

web.archive.org/web/2010103...

web.archive.org/web/2010103...

An excerpt

Implying that thyroid testing is unerring, Dr. Guttler criticized Drs. Richard and Karilee Shames. (Dr. Richard Shames is a physician, and Dr. Karilee Shames a holistic and psychiatric nurse. They are thyroid experts who often write articles for Mary Shomon’s website. They are also the authors of the popular book, Thyroid Power.[10]) Dr. Guttler wrote of them: "This doctor and wife have clearly stated on their website that people can be hypothyroid with normal tests! That is grounds for not paying any further attention to them as experts in thyroid disease."[7] He went on, "Why should patients pay any further attention to any doctor who is selling 10 step programs, books, and advocating that, obese, fatigued, cold, and muscle aching people with 100% normal T4, T3, and TSH tests, are hypothyroid! That is scientifically impossible!"[7] (Italics mine.)

Dr. Guttler is fervidly dogmatic that thyroid testing is absolutely flawless—if the test results are "normal," then it’s categorically impossible that any symptom the patient has is a result of too little thyroid hormone regulation. However, so many studies show that thyroid testing is highly unreliable that only blind faith can account for Guttler’s ardent advocacy of the tests.

A study by Fraser,[44] for example, showed that the TSH and free T4 tests—which Guttler uses—are in fact highly fallible. Fraser studied patients on T4-replacement. Of 108 patients who were free from hypothyroid symptoms—and any signs of overstimulation—53 (49%) had TSH levels below the lower end of the reference range. This was a TSH level that thyroid specialists such as Dr. Anthony Toft have falsely designated a "thyrotoxic" level.[47,p.91]

The endocrinology specialty has intimidated most conventional doctors into accepting without question Toft’s false designation. As a result, most doctors would have had Fraser’s patients—who were free from hypothyroid symptoms but had low TSH levels—reduce their T4 dosages. Of course, this would have raised the patients’ TSH levels. And most likely, it would have caused them to begin suffering again from hypothyroid symptoms.

Most conventional doctors also accept without question dogmatic pronouncements, such as Guttler’s, that patients cannot have hypothyroid symptoms when their TSH levels are "normal." Because of this, conventional doctors would blame the new hypothyroid symptoms of Fraser’s patients on mysterious new diseases, like "fibromyalgia" (see Addendum 1) and "chronic fatigue syndrome."[23][24][25]

web.archive.org/web/2010103... Thyroid Function Tests

[fuzzlebug]

Thanks Moggie,

I just wanted to double check I was understanding correctly.

So this would mean that patients who felt better with thyroid replacement which caused TSH levels to fall outside the reference range are acknowledged and allowed to continue their treatment?

[Moggie]

I think that would all depend if you had other issues going on. I was on a T3/T4 combo with a TSH of lower that 0.05 and although I felt fine my heart was all over the place. It was racing, pounding and missing beats so my GP took me off of the T3. Before I owned up to the heart issues (I tried to sort it out myself for months to no avail) my GP was quite willing for my TSH to be as low as 0.07. but I do know people on here who's GP's go into a spin when the TSH is low and insist that they take a drop in medication.

So really I think it is all up to the GP and his/her take on the TSH test and also the patients relationship with their GP. My GP was happy for me to have a low TSH as she knew (or thought she knew) that I was being sensible and also that I knew a lot about my condition.

Sorry I cant be of much help but like everything thyroid related I think its all down to the individual GP and the individual patient.

Moggie x

[fuzzlebug]

Thanks Moggie.

I just wondered if this was a good document to show my GP.

He recently lowered my thyroxine from 50 - 25 because my TSH was 0.03, saying I was over-replaced.

I felt well on 50, no hyper symptoms, no heart issues, also had a clear ecg last November, but now I'm feeling increasingly unwell on first 37.5 and now 25mcg.

He is a relatively new GP to me so I don't really know where he stands on following the guidelines, I guess I'll just have to try and see what happens.

[PinkNinja]

I think it is a very good document to show your GP. It says to reduce the dose and then to reassess using both TSH AND clinical symptoms. This means that if you are worse on the lower dose then it should be raised again. There are many reasons why TSH could be suppressed. One very good reason is that TSH doesn't respond to T4 levels in the way it should in hypothyroid patients, making TSH pretty useless. There was some research on this recently. I will have to see if I can find this paper.

Basically, following these guideline and given that you are feeling worse on your reduced dose, your GP should raise your dose back up again. My TSH is 0.14 and my GP was happy to leave me on my dose of thyroxine. I think a lot of the older GPs are more ready to rely on their clinical knowledge rather than a test that doesn't even measure thyroid hormones!

The "informed patient preference" basically means that you know that there may be risks associated with a TSH this low and have decided you wish to continue this dose. The risks most commonly quoted are osteoporosis and heart problems. You clearly don't have the latter (and this is a myth anyway if your T3 is within range) and the osteoporosis is more of a risk if you are not taking enough thyroid hormone. Both these "risks" are myths unless your T3 is significantly above range.

I think I may borrow this document

Carolyn x

[fuzzlebug]

Thanks so much Carolyn!

Your reply has helped immensely and given me the confidence to now show it to my GP.

I'm really pleased if you are able to use it to your benefit as well!

[PinkNinja in reply to fuzzlebug]

I should add that my cardiac symptoms have improved immensely since replacing my thyroxine with NDT and thus increasing my T3 levels, which is rather contrary to what is usually peddled as being true