Are RT3 and DI02 test really necessary for me, as the practitioner suggests?

[CornishChick]

I recently had a consultation with a lovely practitioner recommended by Tanya (who is fully booked) via a kind tip off from radd I am posting my query as I know Radd prefers this to PM’s, also interested to hear others views please.

All went okay (although didn’t learn anything new), but off the back of the consultation, the practitioner said she’d want me to have RT3 tested and the DI02 gene test to see if I convert properly - I explained my FT3 has always been at the top or just over range. I have read so much on here about how RT3 is a waste of time and I personally don’t think a gene conversion test is necessary given my high T3 and ratio prior to ever trialling any T3. I have read Seasidesusie’s and others posts about this. Happy to have relevant tests done, but only necessary tests, due to expense.

Alarm bells also rang as she hadn’t heard of CT3M and admitted she knew nothing about low cortisol:DHEA ratio (which I have and think could be part of the issue). I thought a neuropathic nutritionist specialising in thyroid and adrenals would definitely know about these things?

Could someone please confirm if my understanding is correct, before I sign up to months of practitioner costs. I need help for 19 years of chronic insomnia, and want to find someone very knowledgeable who can help me.

Thank you very much. 😊

[radd]

CornishChick,

I agree RT3 and /or DIO2 shouldn’t need testing when FT3 levels are good.  They are also expensive, especially RT3 which is also incredibly difficult to interpret . Have you asked why she thinks these tests are necessary and what she was hoping to achieve when FT3 levels are already adequate? 

Tanya is not a thyroid specialist either and will generally go by the TSH but accepted my genetics showing impairments on TRH/TSH receptor  and a gene connected with TSH signalling, so diminishing an all round normalised TSH response. I think these results are common on this forum. 

I wouldn’t expect others without thyroid issues to have heard of CT3M. T3 and thyroid physiology aren’t even widely understood by conventional medicine who prescribe it, let alone the intricate influences T3 has on the adrenals circadian rhythm by a newly qualified(?) neuropathic nutritionist. 

You approached Tanya for the DUTCH. Is this new practitioner well versed with the DUTCH? Have you read reviews about her or seen any recommendations apart from Tanya (who trained her). Is it worth waiting on Tanya’s waiting list if you don’t feel happy with the other one? But also remember Tanya can’t prescribe hormones either which initially seemed quite important to you.

I'm sorry you are having a hard time. It can be so difficult choosing where to place our focus and I still think a menopause clinic might suit your needs and expectations better, and some also offer the DUTCH.

[CornishChick in reply to radd]

Thank you very much for your view. I didn’t ask her on the consultation but will do when I reply to her email. She is advertised as a thyroid specialist and has had thyroid issues herself for years, so I thought she’d be fairly up on all thyroid and thyroid related issues.

My chronic insomnia started age 30, I went on to have children around age 40, I’m now 49 and have regular monthly periods. Whilst I am no doubt in the perimenopause stage, I don’t believe that is what has caused the last 19 years of insomnia, which has a very definite adrenal related pattern of waking at 1-2am and being unable to get back off. I also have classic signs of adrenal dysfunction with mid afternoon slump, brief energy at 5pm, then shattered in an evening.

She didn’t mention the Dutch test, so I brought it up and she said yes she can run that through. I think you’re right, I maybe better waiting for Tanya, who may have more experience, or menopause clinic if you think that’s what triggered my insomnia at age 30? I am fairly sure a stressful event age 30 is what triggered my adrenal insufficiency, but I am here to gain knowledge off brilliant people such as yourself, for which I am eternally grateful. Thank you so much Radd 😊

[CornishChick in reply to radd]

ps forgot to say she has glowing reviews on her website, but I can’t find any independent reviews. She was very lovely, but I’m not sure is fully equipped to tell me something I don’t already know.

Do you think it’s worth me having the gene test you mentioned above please? Thank you.

[radd in reply to CornishChick]

CC,

No, not unless thyroid hormone results never made sense. Mine are now balanced for several years but I still like investigating.

Sorry- I should have said Women’s Health Clinic as opposed to Menopause Clinic, although some might be able to help you too.

[CornishChick in reply to radd]

That’s brilliant, thank you so much. Sorry one last qn, are there any woman’s health clinics on the nhs or should I just go straight to private with a Dutch please?

[radd in reply to CornishChick]

If it were me in your shoes, I’d go private if you have the funding because you will wait months/years on the NHS and then be offered little understanding of our issues, and they don’t offer the DUTCH.

[Lalatoot]

Cornish Chick I fully agree with you. Trust your instinct. Those tests are not going to tell you anything about you.As you know rt3 can be caused by so many other things and you can look at conversion by comparing percentages through ranges .

Many folk have the dio test done only to prove poor conversion to doctors so they can hopefully get t3 prescribed. You don't need to do this.

Don't waste your money. Look for someone else to guide you.

[CornishChick in reply to Lalatoot]

thank you, really appreciate your advice and support 😊

[Kriticat]

Not directly answering your question, but I have had chronic insomnia for 16 years - possibly triggered by menopause. I recently started taking CBD oil, and it has really helped. I couldn't sleep until well after midnight, then I would wake at 4 and not get back to sleep until just before the alarm went off! I still can't sleep early and wake a couple of times at least, but I rarely have trouble getting back to sleep these days.Good luck, lack of sleep is awful.

[CornishChick in reply to Kriticat]

Thank very much. It is extremely difficult, especially with two primary school age children to care for!

CBD is something I haven’t tried. Would you mind PM ing your source please as I wouldn’t know where to buy a reputable brand. Thank you for your help, much appreciated.

[Kriticat in reply to CornishChick]

I live in Crete and buy from a local company, so can't help with a source. I must admit I was sceptical about the whole thing, including the quality of the oil, as it appears there's no certification or quality criteria (although here in Greece producers have to pay a huge licence fee so it would be easy to add some extra checks)

However, a friend recommended it, and it certainly seems to work, or maybe I'm finally getting my thyroid more balanced.

Maybe you can Google for independent reviews...

It's worth a try, hope it helps.

[greygoose in reply to CornishChick]

simply-cbd.co.uk/

I highly recommend this company.

[CornishChick in reply to greygoose]

thank you gg

[CornishChick in reply to greygoose]

how do I know which type to buy and how much to take please? Is it ok to take alongside LDN please? Thank you.

[greygoose in reply to CornishChick]

I've no idea about the LDN, never having taken it. But, you could email the company for any advice you need, they are very helpful.

I do explain a little bit about dosing below.

[arTistapple in reply to greygoose]

I have just ordered some to try. Hoping for better sleep and improved muscle pain. Thank you greygoose for the info.

[greygoose in reply to arTistapple]

You're very welcome.

[CornishChick in reply to arTistapple]

may I ask what sort of insomnia you have? Do you drop off easily and wake in the night too?

[arTistapple in reply to CornishChick]

I seem to have all of it. Difficulty dropping off (which is relatively new). Waking umpteen times during the night (improved recently by taking thyroxine at bedtime) though how long this will last as everything continually changes, even when I think or hope it’s settled! Waking at a regular time of 3am and awake until 5am. Nightmares and wild dreams. Even sleeping deeply (once in a blue moon) will mean that I am awake all night the next night after such an interlude. Now because of taking thyroxine at night, I am not snacking during the evening - that seems to have helped too. Honestly I could write a book. Giving the CBD a whirl as it mentions muscle pain which is a biggie for me.

[CornishChick in reply to arTistapple]

oh bless you, that does sound erratic. Mine is a definite pattern of awake 1/2am then never get back off.

I understand a protein snack at bedtime is supposed to help as it stops your blood sugar spiking and waking you. Hasn’t helped me, but does help others.

[arTistapple in reply to CornishChick]

Yes tried that too. Erratic. Sounds about right! Looking forward to my CBD oil to try.

[snow22 in reply to Kriticat]

could you give the dose etc of the CBD oil? As I had no success and would like to try it again. Was it spray? I have tried the tea, spray and patches.

[Kriticat in reply to snow22]

This is what I use, I take 3 drops with my nightly chia and magnesium about an hour before bed.

Bottle

[CornishChick in reply to Kriticat]

thank you. When you say chia, is that chia seed? I had some in my homemade nibbles before bed last night and woke after 4 hours, and never got back off! Are you allowed to say where you buy it from, if not could you message me please? Thank you.

[Kriticat in reply to CornishChick]

I soak the seeds in a big glass of water for.at least an hour, my girlfriend soaks hers overnight and has hers for breakfast. I didn't notice any additional sleep issues, have been having them for about a year, the CBD for about 2 months. I was told to stop for a month after 2 months, not sure why and hoping the insomnia doesn't come back when I do! By the way, I was originally taking it for tendinitis pain, the insomnia cure was a fantastic side effect!

[CornishChick in reply to Kriticat]

sounds amazing! Thank you!

[greygoose in reply to snow22]

With CBD oil you need to start low and increase slowly - your ideal dose might not be the same as other people's, you need to find what you need just like you do with thyroid hormones. And, just like thyroid hormones, too much can be as bad as too little. Take CBD at least two hours away from all hormones and supplements, and preferably split dose throughout the day. The drops are best, held under the tongue for a few seconds before swallowing, to improve absorption.

[CornishChick in reply to greygoose]

thank you, just read this after asking for the dose previously!

[CornishChick in reply to greygoose]

when you say low, how many drops is that please?

[greygoose in reply to CornishChick]

One.

[CornishChick in reply to greygoose]

thank you, after how many days/weeks would you increase by a drop if you see no improvement please?

[greygoose in reply to CornishChick]

There are no hard and fast rules. A couple of days, perhaps. Can't remember, it's been a long time. But, the higher your dose gets, the longer the gaps between increases should be.

[CornishChick in reply to greygoose]

thank you. For anyone else reading the thread, the company have already replied. It’s 1 drop 3 times a day, and increase to 2 drops 3 times a day after one week if no benefit seen.

[greygoose in reply to CornishChick]

Don't think that's quite how I did it, but it worked for me, anyway.

[CornishChick in reply to greygoose]

Do you stop it after so long then, it’s not a lifelong thing?

[greygoose in reply to CornishChick]

Ideally, it would be a life-long thing. But my financial circumstances changed. So...

[CornishChick in reply to greygoose]

My CBD has arrived! I’ve got my thyroid and vitamin blood test on Thursday. Am I ok to start the oil now or do I have to avoid it near a blood test please? Thank you.

[jimh111]

rT3 is a waste of time and money. This is an excellent review of rT3 doi.org/10.1177/00045632209... . I plan to post about it in a week or two.

[CornishChick in reply to jimh111]

thank you very much

[radd in reply to jimh111]

Wow, that is a wonderful paper Jim, that goes off in all directions. I look forward to your dissection.

[DippyDame]

Don't waste your money!.

Who is Tanya?

I would be questioning this practitioner's thyroid knowledge! She would do well to learn as you have done by reading posts on here written by people with lived experience and knowledge.

Have you recently had a full thyroid test...after at least 6 weeks on a stable hormone dose?

Have you considered consulting a CBT therapist for insomnia? I have no experience of this but, with a good therapist, I believe it can help.

When, we feel low it is easy to latch on to anything that 'promises" to help....been there, over many years, and wasted money on all sorts of treatments!

You say you suspect an adrenal issue, have you tried an adrenal cocktail?

botanicahealth.co.uk/the-ad...

Good luck!

[CornishChick in reply to DippyDame]

Thank you. I guess I can’t discuss practitioners details here, but Tanya is apparently an excellent practitioner who was recommended by an equally excellent advisor on here.

I am due my thyroid bloods next week, so will post. I’ve always had them done every 6 months at least and I am consistently towards the top of FT4, very top or just over FT3, and suppressed TSH as I take a tiny amount of T3.

Someone previously recommended the cocktail (love a cocktail!) and I’m embarrassed to admit I bought the ingredients and then forgot to try it. I have dug the bits out so will try it, thank you for the reminder!

With CBT, can it work if your hormones are causing the sleepless nights? I’m assuming there’s something wrong with my circadian rhythm and I’m releasing hormones at the wrong time, or producing the wrong amount of hormones. I’ve always wondered whether CBT could help when it’s a physiological cause, I’d definitely try that and indeed anything if it could help. Thank you.

[DippyDame]

Ah right....I just wondered re Tanya

I guess sleeplessness can have many contributing factors...other avenues worth exploring.

"cocktail" is a bit of a misnomer...no alcohol involved!! Give the mix a try it helps a lot of people

[CornishChick in reply to DippyDame]

thank you! Yes not exactly a pornstar martini, but if it works, I’m happy!

When you say other avenues, what would you suggest please? I’ve been unsuccessfully trying to sort this for years and obviously my nhs endo has been totally useless and not interested, it’s a shame given the diseases etc which can arise from lack of sleep! Thank you.

[DippyDame in reply to CornishChick]

Some ideas....I'm not suggesting mental health issues as included in the link!!

nhsinform.scot/illnesses-an...

Sweet dreams!

[Juliet_22]

This is by far the best article I've ever read on RT3 and T3 as well, long and eye opening integrativehealthcare.com/b...

[tattybogle in reply to Juliet_22]

Juliet_22 unfortunately , it also contains some very out of date ideas about the meaning of low TSH in patients who are taking thyroid hormones ( not just in those who are not )

Along the lines of " Can You Ignore A Low TSH?

Some say that you can ignore a low TSH as long as the T3 does not elevate. However, there are still risks from a low TSH and a normal T3. This is subclinical hyperthyroidism and those who have it have higher risks for premature death and other complications. 62 "

So while a lot of it seem ok at first glance , at least some of it needs to be taken with a pinch of salt.

i tried to find the list of references for this article but i can't see them (i'm trying to find '62' to see what evidence this TSH statement is based on)

did you manage to find them listed on there anywhere Julia_T .... am i just being blind ?

**Edit .. yes i was just being blind .. i've found it now under 'sources' **

BUT .... the reference list only goes up to 60 ?

So all in all i'm still dubious about the quality of some of the advice / explanations in this article.. it seems to be coming very much from the "TSH tells you everything, and if it's low when taking thyroid hormone, it always means overmedication " standpoint.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

on further reading, it contains a huge amount of scaremongering about T3 use , based on sketchy/ mixed up logic . It transposes the risks of hyperthyroidism to low TSH on treatment . The issue it raises re. compounded T3 seems to be blown out of proportion for UK where getting drugs compounded is pretty unusual, and the risks of variable amounts of active ingredient seem to be transposed to "all T3 use" , and i'm pretty sure there is something terribly wrong with the section about TSH and Thyroid Hormone Receptors , but my brain is not clear enough right now to explain why / what is wrong with it , but honestly Julia ,, i'm convinced there is quite a lot wrong with this article.

Can i suggest you put a post up asking others to look at this article especially the sections on low TSH, and thyroid hormone receptors, and T3 use, to give you some more accurate feedback about it than i am capable of at present ?

[CornishChick]

My CBD has arrived! I’ve got my thyroid/cortisol and vitamin blood test on Thursday. Am I ok to start the oil now or do I have to avoid it near a blood test please? Thank you.