Tirosint and cytomel over ndt: So I'm not doing... - Thyroid UK

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Tirosint and cytomel over ndt

kingyl profile image
21 Replies

So I'm not doing well on compound ndt here in Canada, even though my bloods are close to being optimal. I've gained so much weight this past few months it crazy.

My naturopath is considering changing my to tirosint and cytomel.

Im due to return to the UK at the end of the year and I'm wondering if I'm already being prescribed cytomel will the UK endo still try to put me back on levo only? Which I just can't do!!!

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kingyl profile image
kingyl
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21 Replies
greygoose profile image
greygoose

Why do you think you're close to being optimal? Sounds more like you're under-medicated if you're still putting on weight.

Why is your endo thinking of changing you to T4+T3? I don't live in the UK, but from what I've read on here, the fact that you're already taking T3 won't cut much ice with UK doctors, they don't like T3. And it's also very rare to get a prescription for NDT, too. :(

kingyl profile image
kingyl in reply to greygoose

My last bloods were

Tsh 0.01 (0.03 - 4.40)

FT4 14.8 (9.0 - 19.0)

Ft3 4.3 (2.89 - 4.88)

Rt3 12 (8-25)

B12 452 (133-675) pmol/L

Serum iron 17.4 (5 - 30) umol/L

%saturation 0.27 (0.15 - 50)

Serum foliate 26.9 > 13.4 nmol/l

Ferritin 51 (11-307) ug/l

Dhea 3.1 < 9.8

This is taking 120mg of compounded dessicated thyroid.

I also take bio identical progesterone cream.

greygoose profile image
greygoose in reply to kingyl

Yes, but optimal isn't a number in a lab test, it's the way you feel.

Are you sure about that ferritin range? It's rather strange. And if that is the range, your ferritin is under-range. What is your doctor doing about that?

B12 should be at least over 500. :)

kingyl profile image
kingyl in reply to greygoose

Oww sorry its a typo. I've just updated the ferritin range.

I feel fine in myself my energy is good I don't get anxious like I used to and generally feel normal just his weight gain argghhh!

greygoose profile image
greygoose in reply to kingyl

Oh, that's better! You had me worried for a minute! lol

Could be that you're one of those people that need their FT3 a little over-range. But, having low nutrients won't help with losing weight. Your ferritin is still on the low-side. If you could eat liver once a week, that is said to increase ferritin very well.

MaisieGray profile image
MaisieGray

The latest guidance dated June 2019 in England (rather than elsewhere in the UK) states:

"Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to consider switching to levothyroxine monotherapy where clinically appropriate. In some cases a retrospective review of the basis for the original diagnosis of hypothyroidism may be necessary. Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a GP with consultant NHS endocrinologist support. Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance.

The consultant endocrinologist must specifically define the reason if any patient currently taking liothyronine should not undergo a trial titration to levothyroxine monotherapy, and this must be communicated to the GP".

DippyDame profile image
DippyDame

During a recent conversation that I had with a medic he indicated just that....the endo will try to put you back on levo.

I am T3-only, and for that reason I self medicate.

Medics are now very unlikely to test T3 far less prescribe it

This is why so many of us on this forum have taken charge of our own thyroid treatment

You appear to be undermedicated on your current protocol ....your medic most likely has little knowledge of the thyroid. Sadly very common.

This may be of interest

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

kingyl profile image
kingyl in reply to DippyDame

Are you from the UK. Can you pm with where you get your t3 and the cost tia

Cominghome profile image
Cominghome in reply to DippyDame

Sorry to piggy-back, but I’d be very grateful if you could let me know where you buy your t3 too.

DippyDame profile image
DippyDame in reply to Cominghome

Cominghome and kingyl

Apologies but we are not permitted to name sources on the forum

The usual advice is that you start a new post requesting sources and then members will send details by PM only.

Hypothyro profile image
Hypothyro in reply to DippyDame

They did ask to be Pm’d 👍

DippyDame profile image
DippyDame in reply to Hypothyro

This is true but by starting a dedicated post other members can also offer their sources thus providing a choice.

The request tends to get lost otherwise

I found that very helpful

Thanks for replying.

kingyl profile image
kingyl in reply to DippyDame

I asked for a private message ☺️

DippyDame profile image
DippyDame in reply to Cominghome

PS - Why do you think you need T3?

Just looked at your profile, your test results show that your TSH is too high and your FT4 too low...you appear to be undermedicated and in the first instance need an increased dose of levo.

Check advice previously offered

You should not add T3 until other avenues have been explored ....again see previous advice.

It's frustrating I know but thyroid treatment cannot be rushed.

Good luck

Cominghome profile image
Cominghome in reply to DippyDame

Ok, will do. Haven’t got around to posting my more recent test results so that info’s a few tests old, and I’ve had a dose increase since then (which didn’t help obviously). Time I updated it!

DippyDame profile image
DippyDame in reply to Cominghome

Recent test results will help members to advise....don't forget to add ranges.

Put them in a new post

What is your current dose?

Stay positive....there is a way forward but it may just take a little time!

Greekchick profile image
Greekchick

Hi kingyl,

Do you have your recent blood work to post? Maybe there is something to see in the results to indicate why. Maybe you don’t get enough T3 in your compound NDT and need to add some. Some of our forum experts are very good at interpreting these. Wishing you all the best.

kingyl profile image
kingyl in reply to Greekchick

I just posted them. Thanks in advance for any advice given 😊

Greekchick profile image
Greekchick in reply to kingyl

I think one of our forum members who are good at this will answer you soon. All the best to you and good luck!

Kitten44 profile image
Kitten44

I'm afraid that yes, you'd be pushed to go T4 only. I was seeing an NHS endo who said he could not monitor me while I continued to take my self-sourced T3, but that privately, he'd be happy to prescribe the British T3 brand... and pay those silly prices the NHS refuses to and therefore avoids prescribing in the first place! So the compromise (again, privately) is now NDT, but fancy brands (e.g. not Thai). So if you are willing to pay privately, that will be the way to go, otherwise, stock up while you can to bring it over here to keep you going!

DippyDame profile image
DippyDame in reply to Kitten44

If these endos would just listen to themselves they may realise how rediculous their advice appears.

We either need T3 or we do not and if we do they should acknowledge a clinical need and prescribe accordingly.

But....they will tie themselves in knots rather than offer that definitive diagnosis and therefore a prescription.

We know hugely inflated prices play a major part but it has to be more than that.....lack of knowledge looms large!

Vast sums of money are directed, for example, at drug and alcohol abuse and obesity....yes these folks need help but let's have a level playing field.

So...are inflated costs a reason or an excuse!

We didn't choose to have thyroid disease....but it falls on so many us to research, test, diagnose and ultimately treat ourselves at our own expense.

Many of us here can do this but how many slip through the net because, for whatever reason, they cannot do the same

It is a scandal of monumental proportions!

Apologies for butting in ...just venting I've been reading so many sad stories of poor treatment.

Best...

DD

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