Insults for thyroid UK and rubbish service for ... - Thyroid UK

Thyroid UK

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Insults for thyroid UK and rubbish service for me, however agreed to do some bloods not all of them though

maplewood profile image
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GP said Thyroid UK was ok for advice regarding vitamins etc but not qualified as much as a Endo and I needed to listen to him. This is because latest bloods show TSH 6 ref range 0.35-4.7 and T4 7.7 ref range 7.8-21. I asked for B12 which has just come in at 176 ref range 115-1000. Serum ferritin 54 rang 20-100 and serum folate 16.4. They wont do antibodies or t3 currently. Would love your views on B12. They wont treat till TSH gets to 10 as via the very good Endo pffttt. Thanks guys xxx

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maplewood
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tattybogle profile image
tattybogle

But it's not ThyroidUK suggesting you could be treated with Levo before TSH gets to 10 Levo... it is what the NHS suggest in their own guidelines .

( that fact that your fT4 is under range (as well as TSH over range) means you are actually 'worse' than this 'subclinical hypo' category and most of us would say that makes you 'overtly hypo' even before TSH goes over 10, but the NHS annoyingly avoided writing anything specific about below range fT4 when they wrote these guidleines .. (cos it's 'all about theTSH' don't ya know !))

These nice.org.uk/guidance/ng145/...

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

humanbean profile image
humanbean

TSH 6 ref range 0.35-4.7

T4 7.7 ref range 7.8-21

B12 176 ref range 115-1000

Ferritin 54 range 20-100

Folate 16.4

Your TSH is over the range and your Free T4 is under the range. You are already suffering from overt hypothyroidism by the NHS's own rules. Whether you can persuade a doctor of that is another matter.

It would have been better if a Free T3 had been done as well.

...

The ferritin range is very odd - can you check it please. The lowest top of range I've ever seen in the UK is 150. Also, the bottom of the range is too low. According to NICE a ferritin result below 30 is evidence of iron deficiency so you shouldn't see a level lower than that included in a reference range. See this link :

cks.nice.org.uk/topics/anae...

...

Your B12 looks much too low to me. I think you probably need testing for Pernicious Anaemia (PA). For advice on that please see the PA Society forum on this site (HealthUnlocked), and ask them what you should do :

healthunlocked.com/pasoc

I don't have PA as far as I know but I do have what appears to be a functional B12 deficiency. This means that I am not deficient or low in B12 in blood testing but I do have several symptoms of B12 deficiency. I deal with this by keeping my B12 (both serum test and Active test) at the top of range or higher, and my B12 deficiency symptoms disappear.

Some useful links relating to B12 :

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/fo...

stichtingb12tekort.nl/weten...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

For someone with a suspected case of Pernicious Anaemia it is vital not to supplement with B12 or Folate until testing is complete and PA has been excluded as a cause of low levels of B12 (or not as the case may be). The treatment for PA is regular B12 injections.

Regarding your folate level - it looks okay, but without a range it is not possible to be certain.

maplewood profile image
maplewood in reply to humanbean

HI, i have double checked that range and that is correct . It says serum ferritin level 54 ug/l Ferritin 20-100. Strange but that's what they say. I am assuming the GP will ring regarding the B12 levels if not i will ring them in a couple of days. Thank you for reply x

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