Levo and hair loss : my son has hashimotos... - Thyroid UK

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Levo and hair loss

Blister4 profile image
13 Replies

my son has hashimotos , currently taking 75mg, made up of teva 25mg and 50mg accord. However the hair loss is still a huge problem and fatigue has crept back in.

The Gp is reluctant to take it above 75mg despite the weight ratio suggesting 100mg.

We don’t have recent labs as yet, however his TSH 6 months ago was higher than when he was first diagnosed 5 years ago!

Is their any evidence to support him asking for t3 combo?

Do different brands affect people differently?

Any advice would be appreciated.

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Blister4 profile image
Blister4
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13 Replies
SlowDragon profile image
SlowDragonAdministrator

Insist on FULL thyroid and vitamin testing

If GP won’t ….test privately

Teva upsets many, many people

what vitamin supplements is your son taking

Low iron and ferritin often leads to hair loss

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and especially if under medicated

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

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

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

SlowDragon profile image
SlowDragonAdministrator

Last results 2 years ago

Showed low ferritin

healthunlocked.com/thyroidu...

Retest at least annually

More frequently when low and improving

Blister4 profile image
Blister4 in reply to SlowDragon

Fantastic thanks again for your In-depth input.

We are having bloods done privately.

Lots of supporting evidence to present to Gp …perfect

ERIC107 profile image
ERIC107

Hi Blister4 - to address the part of your post about different brands affecting people differently, I'm very early in my Hashimoto's journey and am still in the titrating up process.

I started on 25 mcg/day and was arbitrarily given Wockhardt brand, part way through the amount I had been given the GP said I should go up to 50 mcg/day so I carried on taking 2 x 25 mcg Wockhardt per day. Towards to end of the final pack I had a few days when I woke up and actually felt like I was ready to get up after a normal night's sleep... progress, it seemed.

I collected the next prescription and forgot to check that it was still Wockhardt (despite knowing that I should, based on the excellent advice offered on here from numerous posters!) and got home to find I'd been given Teva. I'm now two weeks into taking 50 mcg/day Teva and I feel like I'm back at square one re: fatigue but now with the added bonus of what we can euphemistically call "digestive issues" - my abdomen is so sore for most of the day. I've actually ended up doing a Yellow Card submission for side effects, to log the problems with Teva.

Sorry - short story, made very long... Yes! I've had terrible problems switching between brands, even this early "in the game"... and I know other folks on here have had the same 😒

Blister4 profile image
Blister4 in reply to ERIC107

Good morning

Thankyou kindly for sharing your story and journey so far. I had no idea about the brands/fillers and serious issues they can cause. …lesson well learnt!

It really can be a minefield navigating the hashimoto road to well-being! Good luck on your journey.

Your input has been of great value and very much appreciated.

ERIC107 profile image
ERIC107 in reply to Blister4

Thank you Blister4 - best of luck to you and your son too!

Daffers123 profile image
Daffers123 in reply to ERIC107

I can only take Wockhart 25mcg tablets as they have minimal fillers etc. others all make me Ill.

I am ‘named brand’ on my prescription - the only thing the useless endo I saw privately actually did (at my insistence).

Tell your GP you want them. They seem to change brands of meds just based in prices with scant consideration for the patient! Crazy.

ERIC107 profile image
ERIC107 in reply to Daffers123

Thanks Daffers123 - I do need to contact my GP and speak to her again as I will need to do another repeat prescription before I have my next follow-up blood test.

Anthea55 profile image
Anthea55

Levothyroxine is available in several sizes and several brands.

The manufacturers use different excipients (theoretically inactive substances) to make up the tablets/capsules. However many people get side effects from these excipients. The main problems are with Lactose, Mannitol and Acacia. People who are sensitive to milk products will need to avoid brands containing lactose.

Then you may need to make up the amount you want but it isn't available as a single pill. For example very few brands make a 75mcg pill so you may need to make that from 50mcg plus 25mcg, but the pharmacist will often issue different brands for those. A better solution is to have all 50mcg pills and split one in half to make 25mcg, so avoiding mixing brands. You can get pill cutters from your pharmacist or online, or some use a sharp knife.

Pharmacies don't always have the same brands in stock. They have whatever the wholesaler has sent them this time. So don't expect them to have Brand A just because they had it last time you had a prescription from them. You may need to decide which brand suits you best and have the brand written on the prescription. Check what you've been given before you leave the pharmacy.

Brand Teva is often issued. Someone described it as being like marmite, you either love it or you hate it. It can be worth a try.

Regenallotment profile image
Regenallotment

My hair stopped falling out when I got my B12, D and folate up. Ferritin took ages and it stopped falling out before that. I used Thorne Basic B which has Biotin which I think people take for hair and nails. Might be worth investigating if that would be suitable for him.

🌱

Shield-Maiden profile image
Shield-Maiden

Hi Blister 4,

I just replied to your post, then added a photo, and all of my message disappeared....so, second time around, and in short....

.....If you ever visit Spain, you can buy T4 OTC, in many strengths.

Also, T3 is available in Andorra, at many pharmacies, without a script (due to Brexit, they won't now ship to the UK or Internationally unfortunately).

My daughter and I lose a lot of hair daily. I read recently that hard water causes hair thinning.

When my daughter was young, she lost all of her hair, and had to school wearing a wig.

I feel your pain!

Good luck.

Shield.

Blister4 profile image
Blister4 in reply to Shield-Maiden

Oh gosh your daughter going through that hair loss at such a young age, it’s heart breaking. It hurts me so much to see his hair loss, he’s been dealing with this since he was 18, he’s 22 now!

Thanks for your reply and support. Good luck to you too.

Shield-Maiden profile image
Shield-Maiden in reply to Blister4

Thank you x

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