Confused by thyroid test results

[Manorchimp]

Hope this doesn't end up being a duplicate post as first attempt didn't work.

For a few years I have wondered if I had hypothyroidism. I have many symptoms and so had a private (thriva) test. Results were:

TSH 8.07 (>4.3)

FT4 16.3 (12-23)

FT3 3.41(3.1-6.8)

TPO 106 Kiu/l (>34)

T4 92.6 (66-181)

Tgab 334 ku/l (>115)

So I went to see the doctor who said it seemed likely. She gave me a prepscption for 50mg levothyroxine (to start after blood test) and ordered an NHS blood test for their records. I just called up for results and was told normal, no action. I asked for the actuals. She said that TSH was 2.97, oh...antibodies are abnormal as is ferritin. So I now need to go back and see doctor. I asked about the T4 and was told they didn't test that and I know they don't often do FT3. So now I am confused. Can TSH fluctuate like that? Was my private test 'wrong'? I have the antibodies so why would that be 'no action'. Any thoughts?

[shaws]

Did you have the blood test at the very earliest, fasting (you can drink water) and allow a 24 hour gap between last dose of levo and blood test? If not the results are skewed and ask for another blood test. Follow the above regime for testing.

Once on thyroid hormones the aim is a TSH of 1 or lower and your FT4 and FT3 should be in the upper part of the range but they believe a TSH of 'somewhere' in the range (even the top) that the patient is on suffcient. They are poorly trained.

If you have thyroid antibodies in your blood you have the commonest form of hypothyroidism - i.e. Hashimoto's - and it is the antibodies which attack your gland and they wax and wane until hypothyroid but treatment is the same for both conditions. Going gluten-free can help reduce the attack of the antibodies. You should have increase in levo until TSH is 1 or lower. The FT4 and FT3 should be in the upper part of the ranges.

[Manorchimp in reply to shaws]

Thanks. I did fast and hadn't started the levo at that point. The NHS only tested the TSH and antibodies. They didn't look at T4, FT3, 4 despite me asking. My private test did but don't think they will accept that.

[shaws in reply to Manorchimp]

So many thousands of doctors make the same sorry mistakes. Once we are diagnosed as hypo, the aim is a TSH of 1 or lower but they all assume that if it somewhere in the 'range' i.e. up to about 5, that we're on a sufficient dose. We aren't.

[FancyPants54 in reply to Manorchimp]

When you go to see the GP take your private test and insist they look at the low T3 and the antibodies and tell them you suffer symptoms of hypothyroidism and want to begin a trail of Levothryoixine. You don't have to take no for an answer.

I have found it very useful to print off the list of symptoms I will link here for you, tick all the boxes that apply and give them that too. GP's no longer seem to understand the clinical symptoms of hypothyroidism so we have to "help" them see it for themselves.

bit.ly/1fQlmcn

[FancyPants54 in reply to FancyPants54]

Also, keep yourself a copy of that list each time you retest complete a new one. Over time you will see symptoms disappearing hopefully.

[greygoose]

How long a gap between the two tests? How long were you taking the levo before the NHS test? The TSH can fluctuate when you have Hashi's, as can the other levels. But TSH doesn't move very fast.

[Manorchimp in reply to greygoose]

There was a month between the tests. I hadn't started the levo when I had either test. I started it the day after the NHS test.

[greygoose in reply to Manorchimp]

OK.

Of course, if all they test is the TSH, that doesn't tell them very much. It's a very unreliable indicator of thyroid status. And, it can be raised for many reasons. But, that low FT3 is a dead give-away! Probably why they don't test it! They hate diagnosing people with hypo.

But, as I said, TSH does move around with Hashi's. It also drops throughout the day - did you have both tests done at the same time of day?

[Manorchimp in reply to greygoose]

There was about a two hour difference which was out of my control. Do people have success in 'making' GPs test FT3?

[greygoose in reply to Manorchimp]

Well, it doesn't depend on the GPs entirely. Sometimes you can persuade the GP to do it, but the lab then refuses. The lab's word is law, I'm afraid.

[Manorchimp in reply to greygoose]

I didn't realise that. Doesn't really seem to be the right way around!

[greygoose in reply to Manorchimp]

Certainly doesn't! I can't imagine how that came about. But, I'm sure it's all to do with cost cutting - money before patients, that's their motto.

[SlowDragon Administrator]

The antibodies being within range seems very unlikely

Have you actually got printed copies of results? Receptionist can make mistake. You are legally entitled to printed copies of your blood test results and ranges. Ring and request, you may need to wait a day or two before picking up

If result really does say TPO antibodies are within range ask for repeat test and vitamin D, folate, B12 and ferritin too

Assuming you stay on 50mcg Levothyroxine, you will need bloods retested in 6-8 weeks

[Manorchimp in reply to SlowDragon]

Thanks. I only have what she told me over the phone but will request full printout and make an appointment. She said my results were 'normal, no action' but when I pressed her she did say the antibodies and ferritin were abnormal (but presumably still 'no action'). I'm most confused about the big difference in TSH between the two tests.

[StillEverHopeful in reply to Manorchimp]

Definitely get printout of results. I started doing this after advice here.

I not don’t trust what I am told over phone & now always ask for a printout too. (Had batch of tests for various things. Receptionist told me all was ok but when print out something’s were just below range!)

[SlowDragon Administrator in reply to Manorchimp]

TSH can change a lot in a month with Hashimoto's

[Manorchimp]

Thanks for all the advice. I managed to get an appointment today and thankfully the locum I saw was OK (they are all locums as our surgery is in trouble). He insisted that the antibodies and symptoms were key. My private test was as persuasive as the NHS one (policy is to accept private tests) and says that I have an underactive thyroid. Staying on the levo, blood tests in a couple of months and referral to endo. Just shows I should have ignored the receptionist. Not sure how other blood tests will help if they only look at TSH but will take it a step at a time.

[SlowDragon Administrator in reply to Manorchimp]

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. No other medication within 2 hours. Some like magnesium, calcium, HRT, iron must be four hours away

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Bloods should be retested in 6-8 weeks. Important to test vitamin D, folate, ferritin and B12 too at next test. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working