Prodigal son returning for advice.: Hi, friends... - Thyroid UK

Thyroid UK

141,263 members166,531 posts

Prodigal son returning for advice.

steviecat profile image
13 Replies

Hi, friends.

I haven't been around for the last 4 months or so, but am popping in hoping for some advice, please.

For the last couple of years since being diagnosed hypo I have been using myself as a kind of testbed. I started on Levo, moved to NDT and, for the last four months have taken nothing except a few vits.

Every time I changed something I wanted to see where I was - what might have happened. As far as taking nothing is concerned, yes, I know it is unwise, but I always expected to have to come back to it in one form or another.

Anyway, here are my latest bloods from a couple of days ago. Taken first thing in the morning; no food; no water; no medication of any kind. I have included previous tests in March 2017.

TSH. 15.2 (0.270-4.200) - March 2017 0.046

Free T4. 10.4 (9.30-17.00) - March 2017 15.20

Free T3. 3.30 (2.00-4.40) - March 2017 4.60

Yes, those numbers are quite a bit worse than when I was taking NDT, but I'm surprised at how high T3 is still. If there are any theories, I'd love to hear them. It is also worth mentioning that I don't really feel much different than when the numbers were more favourable.

Anyway, I obviously have to get back to 'replacement', but here's the thing. I have a prescription for Levo 50mcg. But I have also managed to get hold of 60 x 25mcg tabs of T3. The question is: For my next test do I take the Levo at 50mcg and get tested again in 6-8 weeks; should I try just the T3 (bit at a time) or, indeed, should I try a combo?

The numbers might give a clue as how best to proceed, but I'm personally not sure which way to go. I am happy to experiment a bit and am fully aware of all the implications, so if anyone can see something that might help me to make up my mind I'd be very grateful.

Bestest

Stevie x

Written by
steviecat profile image
steviecat
To view profiles and participate in discussions please or .
Read more about...
13 Replies

If you've done all the thyroid basics and still feeling poorly then you may need to look outside of the thyroid box.

steviecat profile image
steviecat in reply to

Hi, Cinnamon. Many thanks for your reply, but as I said in my post, I'm not feeling poorly. However, that could change, I know.

marsaday profile image
marsaday in reply tosteviecat

A lot of people with high TSH feel ok and they won't know they have a problem. The thyroid is not working so well, but the brain is basically whipping it harder, so the horse is still moving. Longer term the horse is getting tired and won't be able to ride like this for many years and eventually will have to lay down.

So when you come to take thyroid hormones the brain senses a change and shuts off TSH. It is then common for people to feel not so good. It can take a good while for these people to find a balance artificially.

At the moment your tissue levels of T3 are probably ok, hence why you don't feel so ill. If you do take meds, the changes that happen leave you with lower tissue levels, but bloods might be ok.

Why is it so hard to get balanced on meds is the big question. No one seems to do any research into this area.

Dr Blanchards thyroid function book talks about this issue and it is a great read. He is an advocate of T4/T3, but using T3 in very small doses.

I would look at trying this system first because so many people get on T3, but they start far to high and they can go past their sweet spot.

I would take the 50 T4 and add in 1/8th of the 25mcg tablet of T3. This will be 3mcg approx. If you use a stanley blade the tablets cut very easily. Ideally you would start on 1mcg of T3, but cutting them this small is hard.

Bedtime dosing for both T4 and T3 is something to try as well as you might get a better effect.

in reply tosteviecat

Sorry steviecat I missed that part, must stop speed-reading!

Clutter profile image
Clutter

Steviecat,

The high TSH is probably stimulating conversion of T3 but it's not sustainable when FT4 is low. I'm surprised you aren't feeling unwell with those results.

I would start 50mcg T4 plus 12.5mcg T3 with is equivalent to 87.5mcg T4 in total.

steviecat profile image
steviecat

@Marsaday and Clutter. Many thanks for your thoughts. They kind of reinforce my instincts. I am most grateful :-)

BootsOn profile image
BootsOn in reply tosteviecat

My 2p-worth is to agree with Marsaday and Clutter. In particular, there's no need to go T3-only unless/until you exhaust all other possibilities.

steviecat profile image
steviecat in reply toBootsOn

Thanks, Boots :-) Don't really want to go T3 only - apart from anything else, I've only managed to get hold of 60 tabs of Cynomel. (After exhausting every pharmacy in Normandy I finally found one who gave me them without a prescription. Feel a bit guilty as the girl probably shouldn't have...) Just out of interest, they cost me the equivalent of £2 a packet!

BootsOn profile image
BootsOn in reply tosteviecat

Stevie, £2 a packet? You can go off people, you know!

Seriously, there's nothing wrong with going T3 only, I did but only after nothing else did the trick.

steviecat profile image
steviecat in reply toBootsOn

Hey, Boots. Yes, it is remarkable just how badly folk are being ripped off in the UK. I'll see how things go, but getting my 'quack' to agree to prescribe T3 has so far been impossible. Hence, my trolling around pharmacies to find someone who would sell me some.

steviecat profile image
steviecat

@Marsaday. Just pondering on your post led me to this:

thyroidscience.com/Criticis...

There is quite a lot on the interweb about how Blanchard dropped the ball with some of his theories. However, it's another case of, you pays yer money and takes yer choice, I feel...

Regardless of that, I found your post interesting and informative; it made me think. Thank you :-)

marsaday profile image
marsaday in reply tosteviecat

John lowe had his approach. He was using large amounts of T3 only.

Blanchard had his approach.

There is no right or wrong treatment in thyroid issues. This is the big reason why we don't get the help needed from mainstream medicine. They seem to think there is only one protocol to make you well and thats it.

The reality is there are many ways to finding good health. We should be aware of these different approaches and that applies to the thyroid forum boards all over the world.

Blanchards approach is rarely discussed and known about on the boards. I feel it should be the first port of call when trying out new approaches over T4 only. It makes sense to me that you would go from T4 only to small T3 doses added to the T4 next. If that doesn't work out i would then try using higher T3 doses with the T4, then look at using NTH and then look at T3 only.

I am sure Blanchard didn't help some patients, but he seemed to find most of his patients got better the way he treated them. I am sure the same can be said of Dr Lowe.

I write from my own experience though and i have tried all protocols since 2008.

Eventually i found using a small dose of T3 (6.25mcg) was much better for me than using big doses. I was on 150 T4 and 50 T3 at one point. I then came across blanchards book and what he talked about was very different to mainstream forum advise. He would have liked T3 to be made in 0.1mcg sizes and then in 1mcg sizes. So you can see 6.25mcg is a big dose of T3 in his world.

My approach to get people better is to get the Ft4 into the mid teens to high teens in the pmol reference range (10-22). Hold this level for a while, then add in the T3 in small amounts starting with 3mcg approx.

See how the bloods work out with the small amount of T3 and make adjustments from there based on these and how you feel. All the time keep an eye on the main vitamins and minerals and check cortisol is working ok. If you don't have enough cortisol, or too much, the T3 will not enter the cells. I also think winter time has a big impact on requirements too and so you may need more thyroid hormone at this time and less in the summer.

steviecat profile image
steviecat in reply tomarsaday

Thanks, Mars. You make a great deal of sense. I intend to follow pretty-much the protocol you describe. Bestest. :-)

Not what you're looking for?

You may also like...

NDT dosing - self medicating - advice please?

I have been on NDT 1x grain for just over 2 weeks and was going to get a BH blood test done 6weeks...
jbthyro profile image

New erfa trial with levo - very worried about endo prescription and pharmacy NDT info. Please can anyone help?

Edit - endo says take ERFA 30mg OD - I don't even know what OD means? Assume every day 30mg but...
Opal79 profile image

Waking at 4:30 since starting T3

Hi all, I've tried searching because I'm quite certain I'm not the only one but the search function...

Help with results please, low t4 on T3/T4 treatment

Hi, I've been on 50mcg levo and 20mcg liothyronine for a few weeks having been on 100mcg levo for...
misslissa profile image

How to dose new prescription T3 with current levo. Please can anyone advise?

Hi I'm not converting well and have been prescribed ERFA NDT by an endo, I not yet ordered and on...
Opal79 profile image

Moderation team

See all
helvella profile image
helvellaAdministrator
RedApple profile image
RedAppleAdministrator
PurpleNails profile image
PurpleNailsAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.