Can you help my son?

[bobbobing]

He has gradually had his thyroxine dose raised and it is currently on 75mg / 100mg on alternative days. The last test resilts came back as TSH 1.75 (0.35 - 5.50) amd T4 20.2 (10.5-21.0). The doc says to leave dose there as to top end of T4. But he is still hugely tired and depressed. He is 17 this week. Any ideas?

[SeasideSusie Remembering]

bobbobing

He needs FT3 testing.

His TSH may be better lower, most of us treated Hypo patients are better when it's 1 or below. His FT4 is at the top of the range but there's a good chance that he's not converting T4 to T3 and it's low T3 that causes symptoms.

He needs TSH, FT4 and FT3 all testing at the same time from the same blood sample. If GP wont do it then he can get it done with a private test from one of our recommended labs - Medichecks or Blue Horizon. Only fingerprick tests, or "arrange your own blood draw" are currently available.

If he's going to do one then I suggest he gets the full thyroid/vitamin panel because optimal vitamin levels are essential for thyroid hormone to work properly. The recommended tests are:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func...

You can use code THYROIDUK for a 10% discount on any test not on special offer. Check on Thursday to see if it's on special offer.

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk... (previously known as Thyroid Check Plus Eleven)

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test:

Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.

Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.

Medichecks are currently including a Tracked24 return envelope so that the sample arrives within 24-48 hours which they say is fine. Only do the test and return on a Monday or Tuesday so that there is no chance it can be delayed in the post over a weekend.

**

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

**

TIPS FOR DOING FINGERPRICK TEST

* Be well hydrated, drink plenty of water the day before, and before you do the test.

* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.

* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.

* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.

* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.

* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable

I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did

* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.

If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.

**

Come back with results/ranges for further help.

[bobbobing in reply to SeasideSusie]

Thank you. We can't do medichecks as he is under 18. Last time he did have T3 tested. These ones were:

TSH 1.62

T4 16.8

T3 5.4 (4.2-7.5)

How does that look to you?

[SeasideSusie Remembering in reply to bobbobing]

Blue Horizon will do tests for under 18s.

Presumably the range was 10.5-21.0 for this test, so it was 60% through range. FT3 was 36.36% through range so conversion was poor.

It's essential to get those vitamins tested plus antibodies, as the next step, to see if there are any problems there which could be causing a conversion problem.

[SlowDragon Administrator]

11 months ago ....post with vitamin results

healthunlocked.com/thyroidu...

low B12 and no vitamin D tested

Was pernicious anaemia tested for?

Did he get vitamin D tested

Obviously all four need retesting at least annually, ideally twice year

[bobbobing in reply to SlowDragon]

Yes we did Vit D and was normal. I think they did anemia in a hosp appointment when looking for probs.

[bobbobing in reply to bobbobing]

We have a phone call with consultant on friday and I wonder if she is going to give up now and send him to mental health. Should TSH be under 1 or should he be ok by now if it is thyroid prob?

[SlowDragon Administrator in reply to bobbobing]

The most IMPORTANT results are Ft3 followed by Ft4

Has he had coeliac blood test?

Has he tried strictly gluten free diet?

[SlowDragon Administrator in reply to bobbobing]

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

[Angel_of_the_North in reply to bobbobing]

Anaemia and pernicious anaemia are completely different, so you need to find out what was tested and the results. If you think GP will try to treat for depression, I recommend that you read Dr David Healy's blog davidhealy.org/blog/ He's UK psychiatrist with a special interest in young people.

[SlowDragon Administrator in reply to bobbobing]

What’s the actual result for vitamin D?

Many GP’s would say anything over 50nmol was “normal”

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

ouh.nhs.uk/osteoporosis/use...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

[bobbobing in reply to SlowDragon]

It was 55.2 for Vit D. I did try short course of supplements. Can try again maybe. We did try gluten free but no change.

[SlowDragon Administrator in reply to bobbobing]

So improving vitamin D by self supplementing to at least a minimum of 75nmol....but many people find around 100nmol is better

Once have Improved level, very likely will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Even though he doesn’t appear to have Hashimoto’s...

The fact his sister does strongly suggests he does too

Has he had thyroid ultrasound scan of thyroid?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamins

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to bobbobing]

Folate 9.37 (>5.38)

B12 346 (211-911)

Ferritin 29.8 (22-322)

These are all TOO LOW

clearly they need retesting to see if improved or worse

We need optimal vitamin levels for good conversion of Ft4 to Ft3

Folate at least over ten

B12 at least over 500

Ferritin at minimum of 70

NHS is not obligated to treat anything other than deficiencies

We frequently need to self supplement to improve to optimal

Improving nutrients improves conversion

healthunlocked.com/thyroidu...

[bobbobing in reply to SlowDragon]

Thanks for everyone's help. You are all v kind. We are trying vit supplements and endo is asking for more tests. Do you think there is any point in asking for a diff brand of thyroxine to Teva?

[SlowDragon Administrator in reply to bobbobing]

You need to get vitamin levels retested

Levothyroxine doesn’t work unless vitamin levels are optimal

[SlowDragon Administrator in reply to bobbobing]

And ultrasound scan of thyroid