3 months later I had TED - these results mean nothing to me, and I've got 5 pages of them so I've posted what I think is relevant and would be interested in anyone's thoughts!
all I know at the moment is that my antibodies are positive, following the TED diagnosis I have been referred to an Endocrinloigoist so no diagnosis/treatment for the thyroid problem whatever is is yet!
It will come as a shock to know you have TED.This is an excerpt from Dr Toft's article in Pulse Online which will give you some information:-
Part of answer to question 2:-
2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.
4 How does thyroid eye disease manifest itself and how is it treated?
Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.3
The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.
The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.
The eye changes often persist for two to three years after successful treatment of the hyperthyroidism and although there may be significant improvement there is often residual disease, which can be improved by orbital decompression, strabismus surgery and eyelid surgery.
Of all treatments of the hyperthyroidism of Graves’ disease, iodine-131 therapy is associated most often with a worsening of the ophthalmopathy. For that reason it is relatively contraindicated in patients with significant eye disease. For these it may be better to use combination therapy with carbimazole and levothyroxine for the best possible control of thyroid function.
But if radioiodine is the chosen therapy, enteric-coated prednisolone 30-40mg daily should be prescribed for six weeks, as this has been shown to prevent deterioration of ophthalmopathy.
Thanks reallyfedup (me too!) pity Dr couldn't have picked up on any of that, would explain why I have had no energy and am always shattered for best part of last 3 years and dcs tell me I,m fine
thanks reallyfedup, am seeing an Endo on Weds, having another FBC tomorrow,will take those results and the ones done in April, hoping he will do something!
the eye clinic are dealing with the TED and they referred me to the Endo. am now down to 19mg of steroids a day (was 30) and have another appt on Thurs.its been steady for last 4 weeks. no worse, no better!
well that went quite well, she was really good actually, very informative and helpful and explained stuff well, she was also genuinely interested in what I had found out from this group!
.so ... my antibodies are no longer positive, she said my levels were ok (TSH just under 4, so just above upper range and T4 was 14 (13 in May 13)) but as its pretty certain I will become hypothyroid sometime in the future she's putting me on a low level of thyroxine now as a precaution, she also requested a T3 blood test as that has not been done yet.
She couldn't help with the iron/B12 as not her area but said the eye clinic should deal with that tomorrow.
she wants bloods tested in 8 weeks and again a week before I go back to her in 4 months
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