my last bloods taken in May when then said my thyroid anti bodies were positive but levels fine so did nothing

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!

serum TSH level - 3.04mu/L(0.35 -3.5)

serum free T4 level - 13 pmo/L (8.0 - 21.0)

thyroid peroxidaseantibody level - above range- 42.3 ku/L(0.0- 34.0) above high reference


Serum B12 level- 440ng/L(130.0 -1100.0)

serum folate level - 2.9ug/L (2.7 - 15.0)

if there are any others you need please shout, thanks, Linda

16 Replies

  • Hi Linda

    Sorry you have had no replies - perhaps someone with relevant knowledge will pick this up from Latest Activity...

    Perhaps you could expand a little - are you diagnosed? On Treatment?

    What symptoms are you having?

    This information will help people to better offer informed support...



  • 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.

  • Oh my God ............these doctors are so useless

    Your TSH is too high

    Your Free T4 too low should be nearer 19

    your B12 too low should be in upper quadrant of range

    and as for ferritin thats at danger levels and should be above 70 at miniumum (13-150)

    I bet Folate is low

    Cholesterol is high


    Vit D3


    Zinc are all low too

  • 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

  • Folate, is that iron? if so says chronically low, last choletesterol also low, sutprisngly as I smoked and eat all the wrong things!

  • Folate and ferritin are iron and Smoking and TED definitely do not go together and in fact smoking is the trigger for TED ............all those nasty chemicals are hitting your thyroid and your eyes

  • I know, I have to give up, I am trying!:)

  • reallyfedup - my folate is 2.9ug/L (2.7 - 15.0)

    serum calcium - 2.44 mmol/L

    I've had to take one iron tablet a day for years as my body doesn't store any excess, this was upped to 2 a day last year as iron still too low

    cant see that they've done vit D3,magnesium or zinc unless they are known as something else...?

  • B12is low

    folate is way way too low at danger level

    i bet all others are similar

    vital you insist they take all these deficiencies seriously without levels in upper quadrant nothing will help

    smoking plus hypothyroid cause major deficiencies

  • 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! :)

  • Sally Mitchell who was founder of a TED group that got swallowed up by lousy BTF developed TED without ever being hyperthyroid

    she was Hypothyroid and like you had a battle to get treatment

    you will need to really make a fuss if they continue to refuse to treat your hypothyroid because your eyesite is far too precious to be put at risk like this

    these doctors are putting peoples lives at risk with this refusalt recognise or treat hypothyroid

  • 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!

  • same doctor who did nothing about blood tests also said I did not have one eyeball bigger than other, when I knew I did back in July :(

  • now off to see the Endo at NNUH, fingers crossed he can sort me out!

  • 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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