Conflicting advice between Endo & Blue Horizon

[Trademole]

I am a 54 year old male and have been suffering from tiredness, dizziness, anxiety, brain fog and generally feeling awful for 3+ years.

In early 2015 i saw an Endo privately. He diagnosed borderline secondary hypothyroidism and low VitD, results below.

Vit D 50 (>75)

TSH 1.9 (0.3-5.0)

T4 11.8 (8.8-18.8)

T3 4 (3.1-6.8)

Antibodies were negative.

As a result i have been taking Vit D and thyroxine 150mcg since then and my recent bloods with the endo as are follows

Vit D 100 (>75)

TSH 0.6 (0.3-5.0)

T4 18 (8.8-18.8)

T3 3.3 (3.1-6.8)

So my Vit D is now ok and my T4 is in fact too high. My regular GP saw these results and said i was taking too much Thyroxine, but when i asked the Endo he said this was rubbish and that my secondary hypothyroidism was caused by "pituitary TSH insufficiency", meaning that i dont produce enough TSH so the low reading is irrelevant.

He also suggested that i may not be converting T4 into T3 and has suggested a trial of 5mcg twice a day which i have yet to start.

I decided, upon advice in this forum, to get some additional tests from Blue Horizon to check Vit B etc these came back as follows

Vit B 686 (197-771)

Folate 8.7 (>2.9)

Ferritin 189 (30-400)

CRP 0.9 (<5.0)

From my understanding these look fine.

HOWEVER the thyroid results from Blue Horizon and their advice is confusing me.

TSH .09 (0.27-4.2)

T4 23.9 (12-22)

T3 5.0 (3.1-6.8)

So according to them my T3 looks pretty much ok unlike the suggestion or results from the Endo. They go on to say

"This is a hyperthyroid result (overactive thyroid gland). The high Free T4 and low thyroid stimulating hormone level, are indicative. You may have symptoms – including weight loss, rapid heart rate, sweating and anxiety, amongst others. If you are already taking thyroxine medication, you could be taking too much and downward dose adjustment may be in order. I advise you to contact your usual doctor to discuss these thyroid function test results." This sounds to me that, the same as my GP, they dont fully understand the complexity of Thyroid issues so is probably worth ignoring.

I should also mention that i have positive IgC serology against Epstein Barr virus which could well indicate post-viral fatigue syndrome and make all of the thyroid investigations/treatment pointless.

Im pretty much at the end of my tether and once again hoping that some of the highly informed and generous members of the group my be willing to offer me some feedback?

Thanks!

Mark

[greygoose]

Were all these tests done at the same time of day, and fasting?

The trouble with the comments on Blue Horizon, is that the doctor making them, doesn't know you or you medical history. Your endo does. So, I would ignore the BH comments and go with your endo. It's highly unlikely that your GP has ever heard of Central Hypo, let alone understand it.

[Clutter]

Trademole,

Your GP should butt out and leave your throid treatment to your endocrinologist. No point in seeing a specialist only to have the GP interfere.

Secondary hypothyroidism means TSH is bioactively insufficient, usually caused by some pituitary dysfunction, and lack of thyroid stimulation causes low FT4 and FT3. TSH should therefore be ignored and only FT4 and FT3 measured or taken notice of.

Your endo was correct that FT3 3.3 was low in range indicating you are a poor converter and 2 x 5mcg Liothyronine (T3) would be helpful in raising FT3.

What is the time span between the NHS and Blue Horizon tests and were the tests done at the same time of day?

BlueHorizon don't have your medical history and are assuming that suppressed TSH means you are hyperthyroid or are overmedicated on Levothyroxine for primary hypothyroidism. I don't know why there should be such disparity between the two FT3 results but if you are still feeling unwell I think it unlikely that 10mcg T3 will send FT3 5.0 over range.

VitD 100 is optimal but you will need to supplement 800iu - 1,000iu D3 daily to maintain levels until ultraviolet light is good in March. Take vitD 4 hours away from Levothyroxine and T3.

B12, folate, ferritin and CRP are good.

Why would EBV make thyroid investigation and treatment pointless? Low thyroid needs replacement whatever the cause.

[Trademole in reply to Clutter]

Thanks very much for you speedy input.

The Blue Horizon and Doctors Laboratory tests were done approx 3 weeks apart but at broadly the same time of day. So one of them would appear to be an anomoly.

I will go ahead with the trial of T3 and see what happens.

Re EBV, when i first saw the Endo my testosterone extremely low and thyroid was suspect so i have been taking both for around 2 years but with no improvement in symptoms even though they are both now in 'normal' range. My fear is that even with hormones correctly balanced the root of the problem will turn out to be CFS.

[Clutter in reply to Trademole]

Trademole,

FT4 and FT3 could change considerably in 3 weeks. If you aren't feeling any better than I would assume FT3 5.0 was an anomaly and see what the 10mcg T3 does for you. It's not an instant fix and will take time to build your FT3 but hopefully there will be some improvement in 2-3 weeks.

I suspect a lot of CFS is actually due to low T3 but as T3 isn't routinely tested or even seen as important by a lot of endos and GPs patients get a CFS diagnosis.

[Trademole in reply to Clutter]

I hope you are right - it would be amazing if T3 was a the bottom of certain CFS conditions!

[SlowDragon Administrator]

Sounds like you got a brilliant endo there. Your results look perfect

Hang on to him

You may well find T3 extremely effective.

Though it varies brand to brand. If getting via NHS you have two options. Morningside Healthcare or Mercury Pharma

Personally I have found Morningside much much more effective at exactly same dose.

Other private prescription options are German Thybon Henning or French Sandos

EBV

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

Apparently you can still have Hashimoto's even with low/no antibodies.

Have you tried/ considered gluten free diet

Don't mix it with trying T3, but something to consider in future

[Trademole in reply to SlowDragon]

Thanks, i was beginning to wonder about him but that is reassuring. I am getting my T3 from drugsdirect.co.uk as recommended by Endo.

[humanbean in reply to Trademole]

You will pay through the nose getting T3 from a UK source (close to £10 per tablet!). You would be far better off getting prescription-only French or German T3. Be aware that T3 comes in 20mcg or 25mcg pill sizes. If your prescription is for one size and you try to buy the other you won't get very far.

[Trademole in reply to humanbean]

Thats odd, i ordered Liothyronine 5mcg for £1.25 from drugsdirect.co.uk the place recommended by my Endo?

[ITYFIALMCTT in reply to Trademole]

It's a within-bounds price for those with an NHS prescription but £258 for those with a private prescription - people with a private prescription can find it more affordable to use that prescription to purchase from European pharmacies.

[Trademole in reply to ITYFIALMCTT]

I had a private prescription and the cost was £1.25 per tablet? So i dont know how they do that, very strange.

[humanbean in reply to Trademole]

I don't know how you managed that!

[Trademole in reply to humanbean]

From everything people have said it does sound unlikely, in fact i've just checked the bottle again to make sure its actually what i ordered!

[ITYFIALMCTT in reply to Trademole]

Sounds right for 28x5mcg - this is what I saw when I selected the private prescription option:

Liothyronine Sodium tablets 5mcg

Quantity:

Price with Dispensing card (Trade price): £25.76

Price without Dispensing Card:£35.00

YOU HAVE A PRIVATE PRESCRIPTION (Change this)

You Pay: £35.00

Which is quite weird because if you could obtain a prescription that stated 4x5mcg rather than a 20mcg tablet, that would make it £140 for 28 days rather than:

Price with Dispensing card (Trade price): £258.16

Price without Dispensing Card:£284.20

YOU HAVE A PRIVATE PRESCRIPTION(Change this)

You Pay: £284.20