Endocrinologist appointment and Liothyronine increase. Is it enough?

[DandyButch]

I had my appointment with my endocrinologist yesterday.Apparently my TSH levels have been ....

February 2023 - 20 , given 5mcg x 2 x daily

June 2023 - 12, given 10mcg x 2 x daily

October 2023 - 8, given 20 mcg x 1×daily

Mon, Wed, Fri plus 10 mcg x 1 x daily. Then Sun, Tue, Thur, Sat 10mcg x 2 x daily.

Does anyone have any opinion.

I expected the increase to be higher, especially considering how I feel.

I did tell the endocrinologist this, but she was basing the dose on my weight which is around 9 stone, and she didn't want to overdose. My next appointment is in 4 months time, and my doctor wants me to get back to work!!! Fat chance.

The NHS base everything on TSH.

I cannot afford private testing.

I know this doesn't give the full picture, which is obviously better to judge, but can anyone advise. Was I right, or is the endocrinologist being too cautious.

Thanks folks

[SlowDragon Administrator]

October 2023 - 8, given 20 mcg x 1×daily

Mon, Wed, Fri plus 10 mcg x 1 x daily. Then Sun, Tue, Thur, Sat 10mcg x 2 x daily.

Endocrinologist can’t know much because on T3 you absolutely MUST take EXACTLY same dose everyday

So that would be 35mcg daily

Do you normally split your dose as 2 or 3 smaller doses spread through the day

15mcg waking, 10mcg mid afternoon and 10mcg bedtime

Or

15mcg waking, 15mcg mid afternoon and 5mcg bedtime

Which brand T3 is this

Tablets? Capsules?

When were vitamin D, folate, B12 and ferritin last tested

What vitamin supplements are you taking

[DandyButch in reply to SlowDragon]

Hello,I am on Roma hard capsules 10mcg.

I have just started B12 sublingual. Next week I will start Vit B complex. I am on Vit D supplements 1000iu 1 x daily.

My vitamins were tested sometime last year but were all within NHS range. However, the results were low through range, expect ferritin which was high.

[SlowDragon Administrator in reply to DandyButch]

So you need to get GP to retest vitamin D

1000iu daily is low dose for someone with thyroid disease

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

Some areas will prescribe to bring levels to 75nmol or even 80nmol

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...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

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

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via NHS private testing service when supplementing

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.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

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

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Also important to be taking vitamin k2 and magnesium

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

No other medication or supplements at same as T3 or levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[SlowDragon Administrator in reply to DandyButch]

Hello,I am on Roma hard capsules 10mcg.

Many people don’t get on with Roma capsules

And 20mcg tablets are CHEAPER for NHS too

Current prices

healthunlocked.com/thyroidu...

20mcg tablets

Teva are lactose free

Mercury Pharma loose in pot

Morningside healthcare - currently difficult to get

You can (carefully) split capsules and take 5mcg

But suggest you contact Endocrinologist and ask/insist on 5mcg capsules prescribed

or request trial on tablets

[DandyButch in reply to SlowDragon]

Dear SlowDragon I have jumped through a few hoops, and been able to send an email to my endocrinologist, as suggested.

The acknowledgement stated the response could be up to two weeks.

[DandyButch in reply to SlowDragon]

Hello, does the increase in dose reflect correctly against my TSH result?

[SlowDragon Administrator]

As you have Hashimoto’s are you on strictly gluten free diet and/or dairy free diet ?

If not, get coeliac blood test via GP before trailing gluten free

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[DandyButch in reply to SlowDragon]

I tried gluten free and dairy free whilst on levothyroxine only, but it made no difference to symptoms. I was tested for coeliac disease, which was negative.

Currently, I am still eating gluten and dairy. I am not aware of any problems with this.

Plus, I don't particularly want to give them up.

I like them.

I know intolerances can affect your energy etc, but it is a bit of a rabbit hole.

Many years ago when perimenopausal, and having severe symptoms, I investigated allergies via private means, and was cleared of any allergies. I don't think it was a particularly intense testing. However, turned out it was the perimenopause causing all my symptoms. Because as soon as my hormones were levelled out, I improved. Although it took months to adjust.

[Lalatoot]

Dandy. You can't take different doses of liothyronine on different days. It needs to be the same dose everyday. This is because of the way t3 works in the body and its short half life.

[radd]

DandyButch,

I can’t comment on results without the whole picture but will say you might find your T3 brings better relief from symptoms when medicating the same dose consistently.

T4 is a storage hormone and as such holds room for variation but T3 acts quickly and it is important to dose the same amount at the same time daily.

[greygoose]

I have never heard of anyone dosing T3 by weight before.

The dose by weight is just a rough guide for starting doses for people who have had their thyroids removed. It is not intended to be used for T3, and it is not intended to be a definitive dose. It's a starter dose and is titrated up or down afterwards according to blood test results and - hopefully - how the patine feels.

This endo sounds terribly ignorant! And I cannot understand why, in October, she reduced the dose when your TSH was 8! She should have increased it. Your TSH is much too high. Usually, it would be suppressed when taking the dose you've been taking. So, it rather looks as if you're not absorbing it. But does she never test the FT3??? If you're taking T3 mono-therapy, it's the FT3 she should be testing, not the TSH. I hope this isn't a private endo that you're paying to see because I would be asking for my money back!

[DandyButch in reply to greygoose]

Hello greygoose, Thank you for replying.My liothyronine was increased yesterday from 2 x 10mcg daily to.....

1 x 20mcg a.m. plus 1 x 10mcg p.m. on Mon, Wed and Fri.

On Sun, Tue, Thur, Fri (alternate days) 2 x 10mcg daily.

So my increase has gone up by 10mcg 3 days a week. Sorry it wasn't clear. I understood it, ha ha!

And no, she is an NHS endo.

[greygoose in reply to DandyButch]

Oh, OK! I misunderstood! But even so, that is not how you dose T3. It has to be the same dose every day.

she is an NHS endo

And it shows!

[DandyButch in reply to greygoose]

I have emailed her, the Endocrinologist, but the automated reply says it could be up to two weeks for a response

[greygoose in reply to DandyButch]

OK, well, have you got enough T3 to increase to the higher daily dose by yourself?

[DandyButch in reply to greygoose]

Yes, I have quite a lot of 10mcg capsules.

[DandyButch in reply to greygoose]

I wondered if, given that my TSH is 8, is an increase of 5mcg liothyronine daily sufficient to reduce it to lowest level.

[greygoose in reply to DandyButch]

Probably not. But, it's not a good idea to increase by more than 5 every two weeks. You need a gap in between increases otherwise, you'll find yourself back at square one!

[Brightness14]

One important factor is that you should always be taking the same dose everyday and you are not.

[DandyButch in reply to Brightness14]

Hello, how do I do that with 10mcg capsules? I don't know how I can divide them, especially as I have the shakes . Working out the average for the week, if I have calculated correctly, would be approx 12mcg x 2 daily. But how do I do that? Help, please. My brain is not helping me think straight.

[Brightness14]

Sorry I didn't know that you were on capsules. You would have to try and change to tablets which is not easy.

[SlowDragon Administrator]

Have you got your T3 changed to tablets yet

It’s ESSENTIAL to take same dose everyday

Roma is much more expensive that 20mcg tablets

[DandyButch in reply to SlowDragon]

Hi SlowDragon,

No, I wrote an email around 4 weeks ago to endocrinologist, and have telephoned, but have not received a reply yet.

I don't know what else I can do.

I queried the variable dosing.

[SlowDragon Administrator in reply to DandyButch]

Write again and say you must have an alternative option that enables exactly same dose every day

[DandyButch in reply to SlowDragon]

Hi Slowdragon,

I've phoned the endocrinology dept again and they have said they will forward my email, which I sent on 18th October, to her again.

Just have to wait and see, again.

[DandyButch in reply to SlowDragon]

Hello, Further to my previous posts regarding irregular dosing of Liothyronine ie 3 days a week taking extra 10 mcg on top of 20mcg daily, can this make symptoms fluctuate, or am I imagining it.

[SlowDragon Administrator in reply to DandyButch]

Absolutely, likely to make you very unwell

[DandyButch in reply to SlowDragon]

Thankyou