endo appointment

[fiftyone]

I expect to have a consultation with an endocrinologist in due course. If he recommends something I don't want , does my UK GP have to follow his/her recommendation or can my GP decide with me what's best even if it goes against the endo's point of view?

[Lora7again]

I'm afraid most GPs will take the advice given by a Endocrinologist. Do you think he might decide something that is not in your best interests? If so why do you need to see him? You do realise you can see any Endocrinologist anywhere in the UK, all you need is a referral letter from your GP. Also you can listen to what your Endocrinologist and GP recommends you to do but you don't have to take their advice it is up to you. If you read my story I have gone rogue (I like that word) because the Doctors I have seen in the past have given me bad advice and I don't actually trust them with my thyroid health.

[fiftyone in reply to Lora7again]

I just want to see what the endo has to say about a health matter and T3, but am concerned I'll just be treated like a number instead of someone with an individual history. I'm asking for the name of possible endos to consult before making an appointment, so I can find out about each first. Like you, I don't always take doctors advice and feel lot better for it, but I do rely on my GP for a sufficient supply of levo.

[shaws Administrator in reply to fiftyone]

The endo could be sympathetic but, in general, they are reluctant to prescribe T3 as it is very expensive now in the UK.

[fiftyone]

I currently receive a high dose of levo which keeps me very well, but which most GPs would consider too much. I am concerned that an endo might insist I reduce the levo dose without giving me a T3 supplement to make up for it and that my GP will insist on following the endo's recommendation, leaving me feeling very unwell. My reason for wanting to consult an endo is because I have started having slight heart problems which some medics think may be due to high T4. However, the only way I could even consider reducing my T4 is if I had a T3 supplement to ensure I keep as well as I am now. I would add that the heart problem is not currently a major issue but naturally I want to avoid it if I can, but not at the expense of me feeling generally very unwell.

[fiftyone]

My T4 is about 24 (at least 6 points above the range) and my T3 is 6.3 (high but normal and within range.) I feel very well and have done for sometime, so long as I am on the high T4

[Lora7again in reply to fiftyone]

My T4 is 22 and I feel ok so it is at the top of the range but my T3 is not so high but I feel well. We are all different and that is why I think Doctors should go by how the patient feels not thyroid blood tests.

[fiftyone in reply to Lora7again]

you are so right yet some of them just sit there looking at a screen with figures completely ignoring the fact that you feel ill.

[SeasideSusie Remembering in reply to fiftyone]

fiftyone

I'm not sure if you've seen this before but if not it may help:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

A more recent article of his says that T3 may be helpful for many patients:

rcpe.ac.uk/sites/default/fi...

In particular:

….It is instructive to consider the history of thyroid hormone replacement in order to appreciate that many of our policies have, to some extent, been accidental rather than planned. Thyroid extract was first used some 125 years ago with good effect and remained in widespread use until the 1950s when a suitable synthetic LT4 preparation gradually supplanted it. The doses employed were 200–400 μg daily. Although T3 was discovered as the second thyroid hormone in 1952 it was not used to any extent therapeutically as patients seemed content with LT4 alone, long before the demonstration that circulating T3 was largely derived from deiodination of extrathyroidal T4. The seismic shift in the treatment of hypothyroidism, however, was the result of the development of sensitive assays for TSH which showed that, in order to restore serum TSH to normal, the dose of LT4 required was of the order of 75–150 μg daily. Higher doses caused suppression of TSH consistent with hyperthyroidism. The resultant dose reductions were tolerated by the majority of patients but this was the beginning of significant dissatisfaction with adequacy of the recommended treatment of primary hypothyroidism which remains problematic today. The previously high doses of LT4 would, by the law of mass action, have overcome any impaired D2 activity in affected patients. Little attention has been given to a study, important in retrospect, which showed that it was difficult to increase serum T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35–40 pmol/l. This was an elegant demonstration that exogenous subclinical hyperthyroidism was a different entity from endogenous subclinical hyperthyroidism, even although serum TSH was suppressed in both conditions. In other words, a low serum TSH concentration in patients taking LT4 did not necessarily indicate overtreatment.

In short, what he is saying is that for Levothyroxine to be effective, the patient needs a dosage between 200 and 400 mcg daily. But since the focus of the medical profession had shifted to the TSH, the medical profession has erroneously decided that the TSH has priority over the wellbeing of the patient.....

[fiftyone in reply to SeasideSusie]

thank you for all the info.

[fiftyone]

thanks for the info. My TSH has been suppressed for a very long time. I always say: if I'm so overdosed with thyroxine why aren't Iosing any weight...! It would seem to me that I need high T4 in order to get a good level of T3. Within two weeks of dropping my levo, even a tiny bit, I am very unwell. I did consult a cardiologist the other day. He never told me what was causing the heart problem!! Said that T4 MIGHT be contributing to it, but didn't say for definite. There yer go.

[SlowDragon Administrator]

Recommend wearing a Fitbit or equivalent to record resting heart rate and activity levels

You can print off weekly summaries

Or monthly or yearly ones too

Suppressed TSH doesn’t necessarily mean over medicated

If /when dose of levothyroxine is reduced Fitbit can clearly record drop in resting heart rate