Update : Hi so I posted the following yesterday... - Thyroid UK

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Update

Pumpkin04 profile image
16 Replies

Hi so I posted the following yesterday:

Hi I previously posted my NHS thyroid tests a few weeks ago which were tsh 3.7 T4 14.7

local ranges are Tsh 0.2-4.0 T4 10-20 T3 0.9-2.5

As my tsh looked to be borderline and given the symptoms I have been having plus the fact that my sister has hashimotos I decided to do the full thyroid screen with medichecks. The results are in and I have to have the foliate retested however I have the main ones I need. I feel like the doctors comments contradict some of the results. Anyway I have a gp appointment tomorrow at 7.50am and appreciate any advice thanks xx

My ferritin is 62.7 (13-150)

Active b12 73.5 (37.5 - 188)

VITAMIN D 51.1 (50-175)

Tsh 5.45 (0.27-4.2)

Free T3 3.88 (3.1-6.8)

T4 13.9 (12-22)

Thyroglobulin antibodies 275 (<115)

Thyroid peroxidase 51.5 < 34

So the update today is that I have been to my gp and he would not acknowledge the medichecks results. He said that my NHS tests previously showed normal. I told him that my antibodies were not checked under the NHS and they are raised in the medichecks test indicating an autoimmune condition (hashi) also my tsh has increased and is over range. He said that he cannot prescribed levo as NICE guidelines state that Tsh have to be over 10. A trial of levo can be prescribed if the patient is presenting under 10 but also has symptoms - which I have!! He said he can't take these into account as they are not NHS tests so long story short he wants me to have all the tests redone including coeliac and a heart trace. Im having all this done tomorrow. 😢

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16 Replies
SlowDragon profile image
SlowDragonAdministrator

SeasideSusie has link that shows

If high antibodies and symptoms you should be started on Levothyroxine

Hopefully she will pop along with that

SeasideSusie profile image
SeasideSusieRemembering

Yes, Dr Toft, leading endocrinologist and past president of the British Thyroid Association, wrote an article in Pulse Magazine (the magazine for doctors)stating that when TSH is raised but not over 10, with positive antibodies, then Levo should be started:

Question 2 asks:

I often see patients who have an elevated TSH but normal T4. How should I be managing them?

Answer:

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 thyroid function tests in 2 or 3 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 restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.

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

tukadmin@thyroiduk.org

print it and highlight question 2 to show your doctor.

Unfortunately, your GP has the quite common pigheaded attitude to private thyroid tests so all you can do is invite him to do his own antibody tests. At primary level, if a GP agrees, I think only TPO antibodies are done and it may be that Tg antibodies can only be done when an endo requests them, but see how you go.

Pumpkin04 profile image
Pumpkin04 in reply to SeasideSusie

Hi SeasideSusie

I showed the gp the article and he said - who is Dr Toft? 🤯

SeasideSusie profile image
SeasideSusieRemembering in reply to Pumpkin04

As GPs we can't expect them to know a lot about every condition or even be interested enough to research them, all we can do in those circumstances is say something along the lines of

"Only the most eminent endocrinologist in the UK, and he's had articles published in Pulse magazine about hypothyroidism, perhaps you missed them".

SlowDragon profile image
SlowDragonAdministrator in reply to Pumpkin04

Give him these

en.m.wikipedia.org/wiki/Ant...

en.m.wikipedia.org/wiki/Lis...

Pumpkin04 profile image
Pumpkin04 in reply to SlowDragon

Thanks I'm seeing a different doc on the 3rd Sept luckily I booked an additional appointment at the same time I booked today's otherwise I'd have been waiting ages. The "NHS" tests that I'm having repeated tomorrow should be back by then. Ive started a new job and can't carry on feelining like this!

in reply to SeasideSusie

Do you know the rationale for only doing the one antibody test and not the other?

SeasideSusie profile image
SeasideSusieRemembering in reply to

Ignorance!

It's probably because raised Tg antibodies can be indicative of other things and it's more common to have raised TPO antibodies when Hashi's is present. But it's possible to have Hashi's with negative TPO and raised Tg antibodies, or even no raised antibodies at all. Ultrasound scan can be useful in diagnosing Hashi's. But of course, hypothyroidism is bottom of the list when it comes to health conditions and undersanding them or even being interested in them.

in reply to SeasideSusie

I'm not sure what they were at diagnosis but in recent years my tpo have been fine and tg elevated.

in reply to SeasideSusie

What would the ultrasound show? I had one on my throat a few years ago and he doc doing it (unusual, not a tech) was concerned for my very small thyroid - spent some time measuring it. When I told him I had hashi, the small thyroid made sense to him. He said that happened at the 'end' - the thyroid is destroyed. Not the end of *me*, the attack. I guess it makes sense - eventually nothing left to be damaged. Anyway, I wondered what a diagnostic ultrasound might show.

SeasideSusie profile image
SeasideSusieRemembering in reply to

What would the ultrasound show?

I've never had one so can't speak from personal experience but I think you've answered your own question there. Yours showed a small thyroid - possibly "shrivelled" due to the Hashi's. It can show nodules, one member describes the damage shown on her ultrasound scan and likened her thyroid to Swiss cheese - having holes in.

radiologyinfo.org/en/info.c...

in reply to SeasideSusie

It was many years after diagnosis but I didn't know there was any controversy about testing antibodies so I didn't know it needed confirming. :) My hypo was found when they were trying to determine why I hadn't oesophageal thrush (healthy people don't get that). Not sure that my tsh would have got me treated in the uk either (though it prob wasn't first thing in the day either so might have got over 10 if it had been first thing - who knows). Then after diagnosed with hypo they tested for antibodies (very high) and I was told Hashi. But in all the tests I've laid my eyes on (I started getting copies about 15 years ago), I'm pretty sure the tpo have always been fine and it's the tg that have been high.

Ah well, all interesting!

Pumpkin04 profile image
Pumpkin04 in reply to SeasideSusie

I think I'll wait for these test results to come back then if I'm not satisfied I think I'll go to a private gp who specialises in thyroid issues. I certainly can't wait until my tsh reaches 10 I'm laid up as we speak feeling unwell 😢

SlowDragon profile image
SlowDragonAdministrator in reply to

So your ultrasound showed autoimmune thyroid shrunk and shrivelled due to ord's Thyroiditis

Rest of the world refers to both Ord's Thyroiditis and Hashimoto's as Hashimoto's.

In UK medics tend to call both, autoimmune thyroid disease and completely ignored the autoimmune aspect!!

in reply to SlowDragon

Yes here it is all Hashi.

Karenk13 profile image
Karenk13

Your Vitamin D level is very low are you taking a supplement for this? Often times Low Vitamin D and Thyroid issues are related and getting your Vitamin D into a more optimal range can help with symptoms you are experiencing as they are often the same as Hypothyroid symptoms such as low mood, Tiredness, Symptoms of depression and memory problems. I would definitely start to supplement this as well a selenium & zinc to support immune system function and see how you feel while you are trying to get your GP to perscribe some Levo for you. If your vitamin D stays that low your symptoms will not go away even if you get a perscription. Hope this helps and hope your Dr can help you :-)

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