Thyroid Help please! : Hi, I would be very... - Thyroid UK

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Thyroid Help please!

Julesb02 profile image
12 Replies

Hi, I would be very grateful for some advice on my thyroid please. I have been on a steadily increasing dose of levothyroxine for the last 4 years since my Dr found antibodies 500+ (and years of being "borderline"! My tsh was up to 9 at that point.

I'm now on 200 levo but still feeling tired, achy, dry skin, cold. Recently had plantar fascilitis and now achilles tendinitis. Can not shift even a pound in weight despite daily walking and a 40hr/wk job working with little children, so constantly on the go. I need more energy but Dr not interested as latest results all in range. I had IBs and intolerances for many years and felt much better with that since cutting out gluten a year ago. Dr reckons I'm probably coeliac but would need to eat gluten for 6 weeks to test effectively. I ate it by accident (due to hotel assurances it was gluten free) at Christmas and was ill for a week. My iron kept dropping (down to 8 at one point) so dr agreed to keep me in iron. My latest results are below. He hasn't tested iron for ages and won't test vitamins. Currently taking 2 x 210mg ferrous funerate a day. I take D3 and B12 daily which do help. Don't eat meat bit do eat fish and loads fruit & veg.

I also severe endometriosis and a 6cm endometrioma currently treated with mirena coil.

Any ideas/advice would be very gratefully received please?

Thank you!

Ft3 5.2 pmol/l (3.1-6.8)

Tsh 0.06 miu/l (0.3-4.5)

Ft4 20.9 pmol/l (11-22)

Bp 106/78

These are the highest my results have been in ages, also helping cholesterol to come down from 4.2- 3.6.

Thank you

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12 Replies
Judithdalston profile image
Judithdalston

I would consider getting your VitD, B12, folate and ferritin tested privately, as Gp won't- might be where some of your symptoms come from re low energy etc. Your FT3 is reasonable, but perhaps you would be better nearer 6, but doesn't look like you could add much more levothyroxin without going out of range...possibly think about addition little T3 if vits/ mins still prove to be optimal in upper half of ranges.

Julesb02 profile image
Julesb02 in reply to Judithdalston

Thank you for your reply Judith. Ive been sneaking 225 mg twice a week for past two weeks and that does help with tiredness. I was worried though that it would too much. I'll go and ask again about vit testing, thank you. I've asked about t3 but he says i need to 'max out' on levo first! Maybe this is me at top level now? I'm looking into t3 when we go to Majorca this year but not sure if they will take a British prescription

SlowDragon profile image
SlowDragonAdministrator in reply to Julesb02

T3 is not available in Spain

Definitely get vitamins tested first before looking at T3

Vitamin D, folate and B12, plus ferritin

Obviously you have Hashimoto's and like many find strictly gluten free diet essential. There's no point doing gluten challenge, just to please GP.

Most people also need to be strictly soya free as well

Have you considered trying dairy free too for a month or so to see if it helps?

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

Julesb02 profile image
Julesb02 in reply to SlowDragon

No I haven't, but at this point I'll try anything. I agree, there's no way I'm going through that to be tested! How long would I need to stay off vitamins before testing? Thank you for replying and for the info on t3 in Spain

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Julesb02

If taking Vitamin B complex, or any supplements containing biotin stop these 3-5 days before

Vitamin D, stop day before

Iron a week before

B12 - results tend to be skewed unless off all supplements for months (obviously not recommended!) just stop few days before

Judithdalston profile image
Judithdalston in reply to Julesb02

I took my FT4 over the range to show FT3 still nowhere near mid range before adding T3. I get my T3 from Turkey privately, £21 for 100x25 mcg without prescription.

Julesb02 profile image
Julesb02 in reply to Judithdalston

Thanks Judith. I have been looking into trying to get when I'm away but I was concerned about the contents of t3 when buying on the internet. Do you buy from a chemist in Turkey? & Do you need prescription?

Thank you

Judithdalston profile image
Judithdalston in reply to Julesb02

No prescription...it's the real thing with batch no, expiry dates etc from bona fida source.

SlowDragon profile image
SlowDragonAdministrator

You might want to consider DIO2 gene test. If test positive it can help in getting T3 on NHS

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

Currently it's a post code lottery, with some CCG's refusing to allow prescribing T3, when NHS endocrinologist says patient has clinical need. This is directly against NHS England guidelines

theyworkforyou.com/search/?...

Julesb02 profile image
Julesb02 in reply to SlowDragon

Thank you slow dragon. I'll look into this. I haven't heard DI02 before.

Thank you

Julesb02 profile image
Julesb02 in reply to Julesb02

And thank you for the links, theyre very helpful

SlowDragon profile image
SlowDragonAdministrator in reply to Julesb02

If DIO2 test result is positive it Should help get prescribed, but some CCG areas still refuse

See latest reply on here

theyworkforyou.com/search/?...

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