Update #3 Self-Treating

Following on from my previous update, (healthunlocked.com/thyroidu... I have another update.

Unfortunately, endo has turned out to be pretty useless. After asking for my bloods a few times I got a fairly shirty response stating he was very busy and would give them to me when they were ready… it’s been just shy of a month and nothing yet (Nb. These are private tests, costing in the region of £600). He did mention that my Synacthen test came back as “borderline.”

In the absence of my full results I have decided to move ahead and self-treat. I’m not recommending this, just sharing what I am choosing to do.

I am self-treating based on a few bits of information -

- Before the tests, the endo said he’d like to see me on 10mg of hydrocortisone (HC) but tests would be useful additionally.

- My Synacthen being “borderline” is clearly indicative of some degree of adrenal fatigue

- In my extensive experience with endos/doctors, waiting around for their advice (when I am fairly sure I know what they will advise) never really pays off. At this stage I feel just about confident enough to move ahead solo. I do not recommend doing this unless you have a certain degree of understanding of what self-treating entails.

So, I have acquired 10mg HC tablets + HC cream. In preparation for HC I have reduced NDT by 1/2 a grain (to reduce uptake stimulation from HC) for 4 days, putting me now at 1.5 grains Armour. Interestingly, over the last 4 days my T4-induced acne has subsided significantly with this drop.

I’ve also acquired T3 and will be increasing with that from now on, not NDT. This is because, after spending some time researching rT3, I want to avoid it becoming an issue. STTM state 1.5. Grains of NDT is the highest one should go because of rT3. Whether rT3 can stop me becoming optimal or not, I am unsure but I figure I’d rather avoid the possibility at this stage. I do know, however, that there are many people living optimally on 3+ grains, so I think it must be individual. However, on balance, the disappearance of the acne by reducing the dose is a sign to me that my system prefers less NDT. I may move over to entirely synthetic at a later stage.

Yesterday was my first day on HC. I took -

Waking: 1 grain NDT

After b’fast: 10mg HC

Noon: 1.5ml HC cream on thighs + 1/2 grain NDT

PM: 1ml HC cream on stomach

Evening: 0.5ml HC cream on lower back

Noticed effects: Spaced out feeling and headache initially. Partner noticed that by the second half of the day I was laughing and had some sense of my old lightness about me that we haven’t seen in me for a long while… I slept all the way through the night. I didn’t have any palpitation episodes during the night as I sometimes have when I change my NDT dose/add adrenal support.

I am going to do this same schedule for 5 days, then take DATs.

Unconditional love to all those blighted by this hideous disease,

Relentless x

[greygoose]

Beware of STTM! They are not up-to-date on the 'latest' research. It has been known for some time that rT3 is not an issue. It is inert - i.e. doesn't cause symptoms, doesn't block T3 receptors - and only stays in the system for a couple of hours before being converted into T2.

Many, many people have high rT3 and never know about it, because it can be caused by many things that have nothing to do with thyroid:

Other conditions that contribute to increased Reverse T3 levels include:

* Chronic fatigue

* Acute illness and injury

* Chronic disease

* Increased cortisol (stress)

* Low cortisol (adrenal fatigue)

* Low iron

* Lyme disease

* Chronic inflammation

* Selenium deficiency

* Excess physical, mental and environmental stresses

* Beta-blocker long-term use such as propranolol, metoprolol, etc.

* Physical injury is a common cause of increased RT3

* Viruses, such as flu

* Starvation/severe calorie restriction

* Mistreated diabetes

* Cirrhosis of the liver

* Fatty liver disease

* Renal Failure.

* Fever of unknown cause

* Detoxing high heavy metals levels

* Etc. etc. etc.

Whether or not NDT suits you is an entirely different matter. It doesn't suit everyone.

I have no experience of HC cream, but I was advised not to take HC throughout the day for adrenal fatigue - never to take it after 1 pm if I wanted to be able to wean off it one day. I don't know if the same applies to HC cream, given that it's a very feeble dose, but it's something to consider.

[Hidden in reply to greygoose]

Thanks GG! 😊

I know STTM are very marmite but in all honesty, after ignoring a lot of their advice for many years as I found their dogmatic attitude a bit icky, I’ve realised they are right about some things and so I’m still open to trialling what they say. I’ve tried everyone else’s way, they’re the bottom of my list 😂 I haven’t a clue whether I ought to worry about rT3, but I do feel better for the drop and figure I may as well increase using T3 for now, but I won’t be increasing my thyroid dose for a while as I want HC experiment to settle in.

I am hoping that by using cream after 12pm I won’t be running such a high risk of steroid dependence 🤞

Have you ever tried LDN? I thought it might be worth looking into.

[greygoose in reply to Hidden]

No, I haven't tried LDN. You can't get it in France, as far as I know.

[GlowCoach Administrator]

Just stopping by to wish you luck! Hope it goes well.

[Hidden in reply to GlowCoach]

Thanks Jaydee, me too!

[TiggerMe Ambassador]

Sorry to hear you have found another lemon 🙄 if you want to be ignored for a month the NHS Endos are up to speed with that treatment 😏

I'm following with interest, I have every faith that you are a lot more knowledgeable than some of the numpties we are supposed to trust and will monitor your responses far more closely than they ever do

🤗

[Hidden in reply to TiggerMe]

thanks Eeyore!

Love from Pip x

[TiggerMe Ambassador in reply to Hidden]

😍🐶 best therapy

[DippyDame]

Have you considered a full thyroid test....a more accurate way to start than "self-treating based on a few bits of information "!

However, I'm assuming that you have a solid grasp of thyroid function, interpreting labs and thyroid treatments.

If your GP has those results then you are legaly entitled to request copies. Ask the Practice Manager not the GP!

I agree with GG who has vast experience.

Focussing on rT3 will lead you up the garden path!

and figure I may as well increase using T3 for now, but I won’t be increasing my thyroid dose for a while

Do you mean you intend to increase T3 meantime, but not levothyroxine?

Do you know your FT3 level....FT3 is the most important lab followed by FT4 and should generally remain within ref range

I hope your experiment helps....be careful!

[Hidden in reply to DippyDame]

Hi DD,

Thank you for your response.

Yes, I have had a thyroid panel or two… I have had Hashimoto’s’s for 17 years and spent the last 5 years trying to get better via various means. This has included copious endos, their tests and many variations of thyroid treatment, be that T4 only, T3 only, T4/T3 at different dosages and NDT. I’ve also done hours and hours of my own research, reading the likes of Paul Robinson, Datis Kharrazian, Isabella Wentz, Stop The Thyroid Madness, Barry Peatfield. I’ve done fecal microbiome transplants, kinesiology, every form of psychotherapy I can find, multiple restrictive diets, fasting protocols, LDN and more supplements than I’d ever want to admit.

I guess I didn’t word it well, maybe a few “pieces of key information” would have done down better than “some bits.” I can see that sounds a bit concerning!

Without wanting to sound defensive in anyway, I want to gently reiterate that I state: “Whether rT3 can stop me becoming optimal or not, I am unsure but I figure I’d rather avoid the possibility at this stage. I do know, however, that there are many people living optimally on 3+ grains, so I think it must be individual. However, on balance, the disappearance of the acne by reducing the dose is a sign to me that my system prefers less NDT. ” I really don’t think these are the words of someone who is using rT3 to determine treatment. I am simply acknowledging that various opinions on rT3 exist, and lowering NDT has suited me.

I lost use for my GP a long time ago sadly. And these tests are private, I’ve never found private and GP to be particularly well joined up.

Re. Your final Qs, yes I know that FT3 needs to be optimally in range. My background is in the first update post: healthunlocked.com/thyroidu... which may help give me some more context!

I really appreciate your response and queries, which I know come from a place of genuine concern for my welfare. And you’re right! I must be careful and I will certainly try to be x

[radd]

dfc,

That’s terrible not allowing you access to the tests that you paid for. Why don't you ring the company and ask for copies to be sent directly to you.

Everyone needs an amount of RT3 as (although a T4 direct metabolite) it is a regulator of both T4 and T3. Its conversion originates from either excess meds or meds not working correctly. greygoose has written a huge list of illnesses that result in excess RT3, but I feel it better to explain it is not the illness per se but the influence that illness has upon the thyroid hormones activating and deactivating deoidinase enzymes.  Excess RT3 can be considered as is a measure of deoidinase type 3’s (D3) activity and it is this D3 that can stop T3 from entering the cell nucleus, rendering our meds useless! 

'I’ve also acquired T3 and will be increasing with that from now on, not NDT. This is because, after spending some time researching rT3, I want to avoid it becoming an issue. STTM state 1.5. Grains of NDT is the highest one should go because of rT3'.

This is complete rubbish. I have explained the origin of RT3 above and every person should take the amount of NDT that retains their well being. You still risk accumulating high amounts of RT3 by topping up NDT with T3 if you are taking excess to your needs or have an illness that influences how thyroid meds work. STTM can he useful but some of the information is way out of date and always written in a sensationalistic fashion. 

'However, on balance, the disappearance of the acne by reducing the dose is a sign to me that my system prefers less NDT'. 

Be careful with this simplistic thought as it's most likely not the NDT directly that has caused your acne but something like a correlating rise in testosterone or DHEA instigated by raised SHBG. All hormones work together and the balance is intricate and fine. I think also when we have multiple imbalances, our window of tolerance narrows so that sweet spot has less variation.

Anyway, good luck with the HC. Dr P was an advocate and I know you've read his book. I would only suggest to take the HC first (before NDT) as this better mimics your natural circadian pattern (think 3TCM). Otherwise, the little tiny top ups with extremely low dose cream throughout the day is a great idea. Dr Myhill suggests OTC cream for this exact reasoning and I have read of others success.

[Hidden in reply to radd]

Hi Radd 🙂 So the bloods were done at Nuffield, I called pathology and they said that they sent them to him on 10th March, the same day he sent me the shitty email 🤷🏻 I’ve emailed him again today with what I hope is a very gentle follow up. Okkkk… I didn’t realise that rT3 was as contentious as pooling 🫣😮‍💨 I did not mean to kick this hornet’s nest! As I say in the post - I dunno the relevance of rT3, but all I can say is that I feel better for lowering my dose to 1.5 grains. Whether that’s related to rT3 or not I don’t know and as I say, I know many do fine on 3+ grains. Yes, I think the acne is linked to DHEA/SHBG. I wish deeply that I’d worked all this out before getting myself to 1.5 grains - starting adrenal support first would have been so much better and easier all round! but annoyingly I get awful withdrawal if I drop my thyroid hormones too low, so I have to stay on as low a dose as I can tolerate (altho dropping to 1.5 has surprisingly brought about benefits I am hesitant to push anything further). I haven’t a clue about the cream’s efficacy tbh… I guess we will just wait and see if thyroid hormones now begin to work 🤞🤞

[tattybogle in reply to Hidden]

i think radd means 'take HC first' as in ~ take HC earlier in the morning, before you take the NDT ?.

[Hidden in reply to tattybogle]

alas, not possible 😞 NDT must be on empty, HC with food as it’s a dodgy tummy pill… unless I delay NDT 🤔 I do still wish I’d started adrenal meds before thyroid as increase in uptake can be uncomfy and a bit daunting 🥺

[radd in reply to Hidden]

The food is only to stop HC irritating your tummy so even half a biscuit would suffice.

[radd in reply to Hidden]

I wish I had started adrenal support BEFORE thyroid meds also. There are many members who think the same.

[Hidden in reply to radd]

do you take HC Radd? X

[radd in reply to Hidden]

No. I was never offered and when I most needed it I didn't know about thyroid issues and adrenal supports.

Now years later my cortisol, DHEA and aldosterone have all recovered adequate levels 😊 .... still thirsty though 🤷‍♀️

[Hidden in reply to radd]

healthunlocked.com/thyroidu... my results are back!

Thirsty… aldosterone?

[Regenallotment Ambassador]

just here to cheer you on , keep us posted 👏👏👏

Give me a C

Give me an O

Give me an R

Give me a T

Give me an I

Give me an S

Give me an O

Give me an L

*that took so long with my not electricy fingers 🙈

I learn so much from your posts, thanks for sharing 🌱🦋🌱

[Hidden in reply to Regenallotment]

😂😂 I laughed out loud. Thanks Regen, so kind xx

Love from Pip (looks like he needs a bit of HC too??)

[TiggerMe Ambassador in reply to Hidden]

Pip looks like he's been on the gin 🤣 where's the Bear??

[Hidden in reply to TiggerMe]

Totally!

Here we have Bear 🐻🤎

[Regenallotment Ambassador in reply to Hidden]

loving the tongue out 😋

[Magicbullet]

Hi dfc,

How did you measure out the HC cream please?

It looks like you're using 3ml in total of the cream and I think this equates to 3mg cortisol if it's a 1% cream? (google says 1ml = 1g of cream but that might be dairy cream rather than skin cream!).

It's a small amount weight wise so I wondered how to measure it, thanks.

[Hidden in reply to Magicbullet]

Hi Magic,

I read that 1ml HC cream = 5mg HC (seems unlikely but that’s apparently the case)

So that means (I think!)

1.5ml cream - 7.5mg HC

1ml cream - 5mg HC

0.5ml cream - 2.5mg HC

I just use a syringe and OTC HC cream x

[TiggerMe Ambassador in reply to Magicbullet]

Funnily enough that big river just delivered some to my door 😉so a 10g tube = 100mg HC

Still not much use unless you have some super sensitive scales!

[Hidden in reply to TiggerMe]

eeyore can you help me with the maths… if I wanted to make 5mg HC, how much cream is that according to the source you’ve found here? X

[TiggerMe Ambassador in reply to Hidden]

Should be .5g so that should equate to your 1ml.... it all gets very confusing doesn't it! But the tube is 10g which is 100mg so it seems to make sense? Doesn't it?

Shall we use our 'message a very smart friend' option 😅just in case we are being complete numpties ....     helvella

[Hidden in reply to TiggerMe]

that is a fantastic idea… helvella please help us! 🙏🏻

[radd in reply to Hidden]

dfc and     TiggerMe

I'm not helvella but can type in a gruff voice (ho ho ho ) and smell like a mushroom 😬.

OTC cortisone cream only goes up to 1% (that is 1mg in each gram). Anything stronger is prescription only even if only a cream. 

Dr Myhill has for years advocated using this cream. I always thought it would be too weak and besides cortisone thins the skin if used too often but I have a friend who has successfully used this method. 

I don't believe you need to measure the cream out but just have some idea of the squirt 🤣, and apply in different areas of thin skin. For instance, if you wanted 5g, then Eyesores 10g tube which is a 100mg would give you 20 squirts.

[TiggerMe Ambassador in reply to radd]

🤣🤣🤣 brilliant… much like my testosterone measurements

[helvella in reply to TiggerMe]

I have just squirted out some cream that is going to be very similar to the HC cream. You can see the amount against a 1mm grid of graph paper. And the scale display shows 0.484 - that is, very slightly below half a gram.

(It just didn't want to come out in a neat toothpaste-like smooth tube.)

Half a gram of cream on a 1mm grid

[radd in reply to helvella]

Omg, it looks like a donkeys head!

[Hidden in reply to radd]

TiggerMe do you think Helvella did that on purpose?

[helvella in reply to Hidden]

The cream shown is not something that you play about with!

It is capsaicin cream (yes, hot chilli pepper). You try to confine it to where it is needed and not allow it to get anywhere else. Especially not your eyes! So having squirted it, I was not going to do anything else with it just to neaten it up - or to sculpt anything.

[radd in reply to helvella]

Thought that paper was smokin'. 🔥

[TiggerMe Ambassador in reply to Hidden]

Definite artistic flare🎇 .... showing off 😆

do we dare ask 🍄 why he has red hot chilli pepper cream? 😏do you think he's a bit of a practical joker on the quiet 🤡

[TiggerMe Ambassador in reply to helvella]

🤣🤣 I knew you’d rise to the challenge 🤗🤗

That looks very much like the rather alarming amount that shot out when I opened the tube! 😅

[Magicbullet in reply to TiggerMe]

Thanks dfc and eeyore, I think I got my sums wrong!

1% of 1g is 10mg not 1mg (1g = 1000mg so 0.01 x 1000 = 10mg)

Can't do maths anymore 😕 and a syringe is a great idea, I never thiught of that!

[TiggerMe Ambassador in reply to Magicbullet]

I love this forum it is so great to bounce things off others 🤗 we have some really smart cookies who are always happy to help us fuzzy heads! 😅