Help needed to understand my Medicheck results.

[Svelsker]

I need help to understand my results please. I've been on thyroid meds for more than 15 years (I'm in my late 60's) and for about 8 years now have been fairly steady on 150mcg levo T4 and 20mcg T3, although I still get a lot of hypo symptoms at times - very cold and can't get warm when the weather gets cold (my daytime temperature at such times seems to be consistently about 35C). Basal temperature averages 36.1C and pulse 70. I've got Reynauds and my hands are constantly going dead. I'm gluten intolerant plus other intolerances. Often feel very lethargic and terribly sleepy at times during the afternoon and evening.

Before Christmas my doctor refused to prescribe T3 any longer - I tried without it and could barely function so have sourced it privately. Without it I couldn't sleep at night but felt terrible during the day, got horrendous body cramps, my eyes felt heavy, my pulse dropped, I got clumsy and so on and within days I started putting on weight.

Here are my results that came today from Medicheck.

CRP 2.75 mg/L (Range <5)

Ferritin 135 ug/L (Range 13-150)

Serum Folate >19.8 ug/L (Range >3.89)

Active B12 148.000 pmo/L (Range 37.5 - 188)

TSH <0.005 (Range 0.27-4.2)

FT3 6.41 (Range 3.1 - 6.8)

FT4 30.000 (Range 12-22)

Thyroid antibody <10kU/L (Range <115)

Thyroid Peroxidase antibodies <9.0 kLU/L (Range <34)

I thought I was getting a vitamin D test with it too, but apparently not. I take Vit D and K daily along with Vitamin B, Magnesium etc.

my TSH results from the doctor have consistently been <0.01 but I don't know the range. I've never had T4 that high before from Dr's blood tests. Usually been around 15. (Don't know the range).

Do I need to reduce the T4 and slightly increase T3? Previously when I've reduced my levo I soon start getting more hypo symptoms.

I do not want to go back to my endo. He's unfeeling, seems to have no heart for how I feel and writes sarcastic letters to my doctor (copies to me!).

Just the last few weeks I've also started getting an awful stomach acid problem which is new for me. Trying to treat it with herbs as I don't want to be on Omeprazole for too long.

[MaisieGray]

In terms of your thyroid results, you may simply be over-medicated with your Levo, but to first rule something out regarding your high FT4 level: amongst your supplements, are there any that contain Biotin / Vitamin B7 that you were taking at the time of your blood draw? It is known to sometimes skew blood test results, depending upon the assay method used, and can create both false highs or lows.

[greygoose]

Is this the first private test you've done? Have you had your antibodies tested before? I'm asking because that FT4 is very high for someone just on 150 mcg levo - plus, as you also take T3 your FT4 should be lower, not higher. So, I'm wondering if you do have Hashi's, despite the low antibodies.

Or, in your list of supplements, does the 'etc.' include a B complex or multi-vit? Any source of biotin which could have skewed your results? If we take biotin we're supposed to stop it a week before the blood draw. So, is that a possibility?

[Svelsker in reply to greygoose]

Thanks for replying. I stopped my multis and my B Complex for 7 days before my tests. Yes this is the first private test I've had. Just phoned the Dr.'s receptionist and got the ranges for my December blood test. They are: TSH <0.01 (range 0.34-5.6), T4 15.5 (range 7.9-20) and T3 4.9 (range 4-6.6).

Could my acid problem have upset the results?

I've often wondered if I have Hashi's as I have multiple food intolerances and have been totally gluten free for about 6 years now. I react to all sorts of things - often non-organic veg and unwashed fruit (pesticides I presume) and some perfectly ordinary foods. I have to be very careful about any prescription drugs (prefer not to take them at all as I usually get a reaction after a day or 2 and can't go back on them - Omeprazole being my most recent one).

I was very surprised at the high T4.

[greygoose in reply to Svelsker]

Yes, it is surprising. But, I don't think that being sensitive to various foods and meds is necessarily an indication of Hashi's. It is, of course, possible to have Hashi's without every having high antibodies, but, in any case, you cannot rule out Hashi's on the basis of one negative blood test. I actually can't see any other explanation for your high FT4 - the FT3 is also quite elevated, compared to your previous NHS test.

Do you think you could persuade your doctor to give you an ultrasound? That would give some indication as to whether you have Hashi's.

[SeasideSusie Remembering]

I thought I was getting a vitamin D test with it too, but apparently not. I take Vit D and K daily along with Vitamin B, Magnesium etc.

Did you order the Thyroid Check ULTRA test? That doesn't include Vit D, it's the ULTRAVIT test that includes Vit D.

As you're supplementing with D3, then if you haven't had a recent test (we should test twice a year) then you can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

[shaws]

Was your blood drawn at the very earliest time? fasting? and a 24 hour gap between last dose and the test?

If not your results may be skewed.

Always get a print-out from the surgery of your results and ensure the ranges are also stated. Labs differ in their machines, and so do the ranges and it makes it easier to respond if ranges are also quoted.

[SlowDragon Administrator]

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test

Is this how you did your test?

How do you take your T3? As single dose or as 2 or 3 smaller doses per day?

If you were originally diagnosed as having clinical need of T3 by an NHS endocrinologist your NHS prescription should not have been stopped

Did acid reflux start after T3 was withdrawn?

[Svelsker]

Yes I had the blood test done at 8am before having anything to eat or drink except water and 24 hours after my last thyroid meds.

Yes, this acid problem has started since I tried going without T3 but that was only for a few days because I just couldn't cope without it. No amount of persuasion will change my new doctor's mind that I need T3. My previous doctor, who recently left, was puzzled by my need of T3 but sympathetic and prescribed it when he could see I needed it and was so low physically without it (this is 8 years ago). Before that that kind private thyroid doctor from Surrey helped my with NDT, T3 and adrenal support. 8 years ago, when my doctor discovered I was on NDT etc that he made me come right off everything and be retested 3 months later - by which time I was just about crawling into the surgery. I can't remember the results then but they must have been low because that's when he agreed to put me on Levo T4 150 (gradually built up to that) and the T3 6 weeks later.

I have been taking my T4 and T3 around 4.30 to 5 am if I wake then and then go back to sleep for a bit. This gives me the gap before coffee and breakfast. Today I've split the T3 - half early this morning and 1/2 before lunch to see if that gets me through the afternoon and evening better.

I really appreciate all your interest and help. Many thanks.

[Svelsker]

And by the way, it was the Thyroid Ultra test I had, which says it includes Vitamin D.

[SlowDragon Administrator in reply to Svelsker]

Thyroid ultra vitamin test includes vitamin D

Thyroid ultra doesn't....but I agree it's not clear and easy mistake to make

Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists. There are ones on there both NHS and private who will prescribe

You need to try to get T3 reinstated on NHS prescription

Roughly where in the UK are you?

Perhaps looking at getting DNA testing too. If test positive for DIO2 gene variation this can (sometimes) help get NHS prescription

thyroiduk.org.uk/tuk/testin...

bluehorizonmedicals.co.uk/t...

New NHS England Liothyronine guidelines November 2018

Note that it says test should be in morning BEFORE taking Levothyroxine

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

en.m.wikipedia.org/wiki/Vij...

Debates in parliament

theyworkforyou.com/search/?...

[Svelsker in reply to SlowDragon]

Thank you SlowDragon. That is all so helpful. I live in the South West.

I will look into some of these other blood tests (DNA etc). Yes, I always have my tests first thing in the morning before taking thyroid meds. Is there any point getting a reverse T3 test done?

Many thanks

[SlowDragon Administrator in reply to Svelsker]

Personally I don't think so

It's a very expensive test. Takes long time to process. Rarely tells much

But obviously it's personal choice

[Svelsker in reply to SlowDragon]

It occurred to me during the night, that it's only since I've been reading these blogs (about a month) that I've started taking my thyroid meds around 4 or 5 am if I wake and then have breakfast and coffee about 7.30. I used to take them when I woke with my adrenal support and have breakfast half an hour later. I also have postponed my vitamins D, K and B till lunchtime instead of breakfast. Could this have made a difference to the effectiveness of the T4? (I don't actually feel any different, but maybe a tad warmer). From today I have reduced my thyroxine to 125mcg from 150 and see how it goes.

I also wonder if the T3 I'm sourcing privately is slightly more effective than the Thybon I was on before from the doctor.

Thanks again for your support.