Private blood test

[Quave]

Please could anyone help shed light on these results?

I was diagnosed with Graves 20 months ago & have had TED for 12 months. Ive been taking 5/5/10 of carbimazole (ie 10mg on every 3rd day) for 6 weeks now after alternating 5/10 for quite a while. I had a 12 week course of intravenous steroids for TED which finished at the end of February and have now started the immuno-surpressant CellCept on the advice of the eye consultant.

My Endo is pushing for thyroid removal which I don’t want yet.

GP wouldn’t test for vitamin D, B12 etc even though I asked to pay for it so I went to Blue Horizon & had their Gold thyroid test. Blue Horizon doctor only picked up on high cortisol (steroids still in my system?) and low B12 - but do you think the other thyroid results are ok? I took blood at 8.00am before breakfast. I take multi-vitamin, selenium, magnesium, B12 (obviously not enough!!) and 2000iu of vitamin D every day.

CRP 0.62 (< 5.0)

Ferritin 121.0 (13 - 150)

Magnesium 0.85 (0.66 - 0.99)

Cortisol (random) 562 (113 - 456)

TSH 4.14 (0.27 - 4.20)

T4 total 77.1 (66 - 181)

Free T4 12.5 (12.0 - 22.0)

Free T3 3.87 (3.1 - 6.8)

Anti- Thyroidperoxidase abs <9.0 (<34)

Anti - Thyroglobulin abs 11 (<115)

Vitamin D (25 OH) 101 (50 - 175)

Vitamin B12 206 (145 - 469)

Serum Folate 30.0 (8.83 - 60.8)

I really would appreciate any comments / advice!!!

[pennyannie]

Hey there again :

Sorry you haven't been " picked up " yet :

Hopefully this little message will " bump you up " the system ??

Looking at your results, your T3 and T4 look a little low - how are you feeling ?

Could the AT drug be titrated down a little ?

Though if your Graves antibodies are still high this isn't a good idea.

Was block and replace ever discussed for you : this is where the AT drug remains high to block your own thyroid hormone output but T4 - levothyroxine is added back in to maintain and try and " cushion you " falling to too low a level of T3 andT4 and causing symptoms of hypothyroidism ?

If this is active B12 I aim for 70 + where as for serum B12 I aim for 500+ : but whichever I think aim for a good 50% through ranges :

There is no reason to loose your thyroid - please play for time, this is just a phase, though I know, an awful time in many ways for many people.

There are many people staying on AT medication way past the NHS presumed cut off :

NHS endocrinologists respond to performance related targets for the reduction out patients waiting list times and in the current climate can see this issue mounting.

I think I said all I could last time, this phase will pass, though I don't think Graves has read the memo stating it has to complete itself in a 15-18 month NHS O/P appointment window,

[Quave in reply to pennyannie]

Hi,

Thank you for responding - you’ve said what I thought - just didn’t have the confidence to believe myself!

Yes - I’m feeling like levels are low- the last conversation I had with the endocrinologist she said to stay on 5/10 alternating - but I slightly brought it down for the last 6 weeks. Seems I may need to bring it down a bit more - although block and replace was never discussed. I was being cautious as I didn’t want the eye disease to get worse - especially during lockdown.

Which test is it that checks for Graves antibodies please?

Thank you again for your reply & encouragement !

[pennyannie in reply to Quave]

I believe you need a TR ab and or a TSI antibody blood test for Graves :

Look back at your origin diagnosis letter and that should give you the medical evidence of which or both antibody you had as positive and over range.

TR ab is generally written with wording like thyroid receptor blocking antibody :

TSI is likely written as a stimulating antibody :

Yes totally get it - it's a difficult one as there is not much information forth coming on Graves - at least there wasn't when I was diagnosed.

I just got told to stop smoking - though I've never ever put a cigarette in my mouth.

I only learnt of Graves some 10/12 years after I had had RAI treatment and very unwell with no answers from the NHS, I thought maybe that Graves had come back, only to find out, it never went away !!!

It's a difficult situation and with the AT drugs blocking your own thyroid hormone production it's up to the skill and experience of the endocrinologist to ease off the drugs enough, so not to drop your levels too low and give you the the equally disabling symptoms of hypothyroidism.

Some endo's keep the AT drug at a relatively high level and add back in some T4 - Levothyroxine so to offset this " blocking " with a controlled replacement of thyroid hormones.

I liken the endocrinologist to " George " in the cockpit of a plane as you have been put in a holding pattern, waiting for this phase of the disease to pass and your immune system response calm down and your antibody levels drop back down into range.

Please do look out for Hannah Stevenson's post, started yesterday, as your situations are similar as to the perceived pressure to decide to have a thyroidectomy.

[ling in reply to Quave]

By any chance have you had your TRAb or TSI tested?

TRAb is the Graves antibody that causes TED.

The good news is that the other antibodies TPO and TG are in the normal range.

Best wishes.