UK: Please could you share your T3 and NDT trus... - Thyroid UK

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UK: Please could you share your T3 and NDT trustworthy reliable online sources, and also any successes persuading your GP to prescribe NDT?

Abi-Abster profile image
11 Replies

For those of you in the UK, I have the following questions:

1) Have you managed to get an NDT on prescription from your GP, and if so how? Also, which NDT? I’m not keen on trying the ‘new’ (old news now!) formula Armour, due to what I’ve read. My GP is a nice guy who just *might possibly* be convinced into prescribing me an NDT – especially since porcine/ bovine thyroid supplements (Nutri Thyroid, etc) have had a positive effect on me in the past.

2)Going off-prescription, which NDTs have you bought online that worked for you? And can you please PM me your reliable online source - especially for Thiroyd, which looks good to me? I'm a bit overwhelmed by the searching process and really just need to be pointed in the right direction for someone trustworthy who sells good quality products.

3)In terms of T3 meds, have these worked for you on a self-medicating basis? And again, can you please PM me your reliable source? I’m confused by what’s on offer, and again, I don’t know which websites are trustworthy to use.

My history:

I’ve been on Levothyroxine for around 15 years but it hasn’t been working for me for some time – although of course my TSH levels are fine (TSH Serum currently 1.42).

I’ve just been back to my GP to ask him to test my T3 and he wouldn’t, but he is testing my T4 (awaiting results).

Due to obvious NHS restrictions my GP couldn’t prescribe me T3 meds Liothyronine, and in any case was adamant that it was unproven to help.

However, my hypothyroid issues (extreme pain, energy levels brain-fog, memory, body temperature) are getting worse and I am desperate. I’m living on Tramadol and other codeine-based painkillers that are acting as a plaster rather than addressing the cause. They’re also incompatible with a family life with two young kids, as I’m generally either doped up to the eyeballs or in extreme agony!

Previously, I have tried Nutri Advanced branded supplements such as Nutri Thryoid and Nutri Adrenal Extra. These definitely helped, but were expensive, and since I was taken off Incapacity Benefits by ATOS last year, money is in short supply. Also, I was advised by my naturopath at the time not to take them for longer than 3-6 months (which, having researched online, I believe to be the correct way to use them).

My health has plummeted during the past year or two and I’m certain it’s all related to my thyroid not getting the support it needs. My hypothyroid symptoms always gets much worse in the week+ leading up to my period, so I'm fairly sure it's at different levels during different times of the month.

I’m a 41 year-old woman who has had ME/ CFS with chronic pain for twenty years. I’ve been Hypothyroid for similar time (in fact I believe it pre-dates – if not paved the way – for the ME). Need. Help. Desperately!

Many thanks for your time (and for sharing your useful online shopping sources!). Your localised info will prove invaluable, I’m sure. I'm concerned with regards to the kids' summer holidays coming up when my energy levels are so low and the chronic pain so high!

Cheers,

Abi.

PS: I live in Sussex. If anyone is able to recommend me a knowledgeable NHS Endocrinologist with a keen interest in thyroid issues, I would love to know! Thanks again :-)

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Abi-Abster profile image
Abi-Abster

Looking at the ingredients in the Thai NDTs, Thiroyd would be my preferred brand.

If anyone has any reliable sources for websites selling Thyroid who post to the UK, I would be most grateful if you could PM them to me. Thanks so much!

SlowDragon profile image
SlowDragonAdministrator

Do you have Hashimoto's, also called autoimmune thyroid. Have you had thyroid antibodies tested? If so were they high

Have you got recent test results for vitamin D, folate, B12 and ferritin. Extremely common for some or all of these to be too low, especially if you have Hashimoto's.

They need to be at very good levels, not just somewhere in the range.

Suggest watching last episode of Doctor in the house from series 2/episode 4. Similar situation.

If you have Hashimoto's then looking at hidden food intolerances, most common is gluten, followed by dairy. Very many of us have found significant benefit from gluten free diet

You need vitamin levels sorted before trying T3/NDT

Current UK debacle over T3 means it's at moment difficult, but not impossible to be prescribed NHS T3.

You might consider DIO2 gene test

dailymail.co.uk/health/arti...

Abi-Abster profile image
Abi-Abster in reply to SlowDragon

Thanks so much for your time, SlowDragon.

I have been gluten-free for over 15 years, and was also dairy-free for 4. I can now tolerate dairy.

My doctor won't prescribe me the T3: I've asked. And thanks, I'm aware of the Daily Mail article.

Unfortunately, I don't have the money for a private DIO2 gene test.

The blood test results back from my GP two weeks ago, read:

Ferritin: 20

Folate: 4.5

Vit B12: 411

I'm about to email my doctor for a prescription of Ferrous Fumerate to treat the low Ferritin (he didn't even pic up on it when I saw him yesterday!) and am taking B12 vitamins which should improve my count there.

How do I treat the Folate?

I haven't got a result for Vitamin D but probably need to take those again anyway (I usually do every winter).

I had a full blood count but don't know what my thyroid antibody test might be written as on the sheet (if indeed it was tested at all!).

Thanks again for your input,

Abi.

SlowDragon profile image
SlowDragonAdministrator in reply to Abi-Abster

Do you have ranges for these?

Yes ferritin is dire

See SeasideSusie excellent numerous vitamin supplements advice replies

Good vitamin B complex with folate (not folic acid) plus sublingual B12 lozenges will improve both folate & B12

It's recommended to always take B complex when supplementing B12....to keep all the B's in balance

Ask GP to test vitamin D. It's associated with Hashimoto's

hypothyroidmom.com/92-of-ha...

Abi-Abster profile image
Abi-Abster in reply to SlowDragon

Thanks SlowDragon. I'll ask SeasideSusie. Although I have just started to take this Karoshil supplement care of a friend, which will help:

Karoshil Product Ingredients: Yeast Saccharomyces cerevisiae grown on a culture medium enriched with vitamins and minerals, yeast Saccharomyces cerevisiae grown on a culture medium enriched with phosphoproteins et monosaccharides (beetroot extract), antioxidant : tricalcium phosphate, Eleuterococcus extract (Eleuterococcus senticosus). Extract of Eleutheroccus, Selenium, Vitamin B1, Vitamin B2, Niacin (B3), Vitamin B6, Vitamin B12, Pantothenic acid (B5), Folic acid, Zinc

Still peed off the GP didn't even mention the Ferritin - took the same friend as recommended the Karoshil to point it out!

Will look for folate supplements etc.

Cheers SlowDragon!

SeasideSusie profile image
SeasideSusieRemembering in reply to Abi-Abster

Abi, with ferritin that low, ask your GP to do an iron panel, full blood count and Haemoglobin test to see of there is any anaemia. If you only ask to be prescribed Ferrous Fumarate and not the other tests, possible anemia may be missed.

Abi-Abster profile image
Abi-Abster in reply to SeasideSusie

Thanks Lady. Had full blood count. No idea what it means or how to post picture of blood tests here?

SeasideSusie profile image
SeasideSusieRemembering in reply to Abi-Abster

You can add a photo only in your first post in a thread. You could edit this one and there will be the option to Add A Photo. Just make sure it is big enough and clear enough for people to be able to read. Alternatively type the results in a post.

Abi-Abster profile image
Abi-Abster

Ha! Sounds about right. And surprise surprise it was a friend who pointed it out to me rather than my (lovely but busy) GP!

Thanks so much for your message: really useful.

Have literally just emailed GP about prescription for the Armour etc above (especially as in the past I found taking Nutri-thyroid really helped), and supplements for the ferritin, as well as asking him to follow Susie's recommendations regarding testing for iron.

Yes, love MHRA website: a mine of useful information!

Only reason I preferred the look of Thiroyd to the S variety is because of all the fillers (haven't tried either). Would love to know your source if you don't mind sharing?

Can't seem to see a PM from you unfortunately. Would you mind re-sending?

Thanks very much!

Off to bed now before the kids get back from school. Zzzzz...

HowCome profile image
HowCome

Ouch, thankyou for the info. My last ferritin (in 2014!) was 20...

Thanks, All, for this post and replies... some similar issues for me... (my bed calls me after the afternoon school run, before I can face cooking an evening meal!)

Good luck, Abi-Abaster!

Abi-Abster profile image
Abi-Abster

It's been pointed out to me that I need to get my T3 levels tested first before I self-medicate.

Do I need my Reverse T3 tested too , or is that already ruled out because my TSH is within range?

Please advise while it's still #thyroidthursday on Medichecks.

Cheers all,

Abi.

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