Freaked out a bit - alone with T3 only

[Soloslim]

Hi,

I've posted earlier about my endo wanting to add 12.5 mcg of levo to my current 62.5 mcg of Tiromel and me crashing on that.

I don't know if I should have pursued that thread to post but if so, I'm sorry and please feel free to tell me so.

So because my endo couldn't be contacted I saw my GP (who doesn't have a clue but means well) after 2 horrendous months of adding that tiny dose of levo to my Tiromel. I was really in a bad place, losing time, totally zonked out, not able to walk anymore. We thought it would be best to stop the experiment and re-evaluate a couple of weeks later.

After 2 days the lights went on again and I started feeling more or less human again (wasn't feeling great to begin with, having AI and a bunch of other chronic ailments) but well.

I visited my endo last week to tell him all this and he fired me. Said he couldn't see me anymore with these blood results and if I kept on taking T3. He would not be responsible for this and neither would the hospital.

When I asked him if I should have pushed through with the experiment longer, he stated he didn't know. I said that I would reconsider if it could be done in an hospital environment but not at home (not safe) and he said they don't such things in the hospital.

I told him I was afraid to land up in hospital for surgery or after an accident or something and he replied I should well be afraid because no hospital in Belgium would administer T3.

He said I maybe would be better of in an academic (university) hospital. I asked him if they have other options than levo then and he said no, there's nothing else but you never know. (???)

Since then I've been asking around on Dutch FB-groups if they perhaps know a Dutch endo or internist who is kind of familiar with T3 (I live in Belgium but near the Dutch border) and I was almost crucified. That my blood results are BAD (normal for T3 but BAD anyway), that staying on T3 is dangerous because of cardiovascular risk and bone deterioration, etc. That my body needs T4, that it's essential. They also said you need T4 to convert to T3, T2 and T1, but I have already learned here that it's the T3 that converts into the 2 and the 1. (diagram) Well, they said, but you still need the T4 to start with! (Duh?)

They also told me that it's normal to feel a little bit off when going back on levo after so long because the body isn't used to it anymore and that I should have pushed through.

They told me the tweaking wasn't easy and that I should stay long enough on levo to get to a comfortable dose. (I was on levo for more than 6 yrs and never felt OK.)

They also told me I wasn't open to suggestions and that I should go and see a dr instead of self-treating (I never ever self-treated, I've been going to drs almost all of my life and I have done every single thing they told me - and here I am).

Well, in short: hell and brimstone.

Why has no dr ever bothered to explain to me why I need the levo? I'm not a scientist but I'm not a moron, there must be a way to explain to patients so they understand.

What exactly are the dangers?

My health is bad as it is. I've been sick all of my years, have ME/CFS, AI, LS, chronic stuff. I've had back surgeries, sinus surgeries... If I don't get a guarantee that I'll feel better on the other side I won't start with the levo again. Maybe if I were younger but I'm 63 yrs old, I don't want to lose any more time.

I also have my 95 year old mother who lives in a home but totally relies on my for everything. I simply cannot afford to be "out" for a year or so.

I'm very reluctant to go and see and endo in a university hospital. Been there, done that. They usually are very rigid about the directives as they are a teaching hospital. And I'm so tired of having to "defend" myself and being told I'm hostile to suggestions.

I don't know anymore. Nobody I can talk to IRL. Sorry about the rant.

I welcome any thoughts.

Peace!

[helvella Administrator Thyroid UK]

When I first heard of people taking only T3, I found it difficult to appreciate that it was a viable approach. I rather assumed that something, somewhere, would suffer from doing so. While easily accepting some needed T3, it was T3-monotherapy that didn't appear quite right.

Since then, we have seen a considerable number of members (still a small minority, of course) who have been surprisingly well on T3-monotherapy. Some having been on that for years. Certainly long enough for short-term issues to have been identified. Probably all doing better than on T4-monotherapy or any previously tried combinations.

The concept of T3-monotherapy jars with preconceptions. Especially if you have spent years prescribing T4-monotherapy.

However, even if there is some reason to believe you should take at least some T4, the reality is it is your choice. They are there to advise, to help. Not to demand you take something that makes you ill. At least, that is how the official ethics come across.

[Sunflower64]

I never ever self-treated.

Then why don’t you see/contact the doctor who put you on T3 in the first place? S/he must be in the best position to advise you, and must have put you on T3 for a reason.

[Soloslim in reply to Sunflower64]

That dr. "fired "me in a very rude way many years ago because I'd had the audacity the consult an endo (he was internal medicine). Anyhow he now focuses primarily on chronic Lyme and not on CFS/ME anymore.

[Sunflower64 in reply to Soloslim]

I doubt you will ever find a doctor familiar with all your conditions and T3 mono-therapy. The way I see it, you basically have two options:

1. Stay on T3 only, self-medicate, and try to find doctors who can treat your other conditions without interfering with your thyroid medication.

2. Go back on levo to please doctors, which will most likely mean ‘have a TSH in range’ even if symptomatic.

[Soloslim in reply to Sunflower64]

If I were young(er) I would most certainly go looking for an endo who would be willing to guide me through the process of starting back on levo, if they could assure me that it would be beneficial on the long term.

But I'm 63 and have been unwell for so long, have fought so long and hard. I've heard "that's not possible" or "that's the first time ever someone has such side effects" more times than I can even recall. If I had 1 euro from everytime a dr said to me "just push through, your body has to get used to it", I would be a millionnaire. I'm not well, I'm exhausted from it all.

I'm still waiting for my life to start and it's all over. I've got maybe, what, 10 years left if I don't get worse? Do I really want to spend those remaining years trying to please drs because my results are wacky?

So I guess I'll go for option 1.

[Sunflower64 in reply to Soloslim]

Some people can only recover on T3. Paul Robinson seemed pretty young when he realised that. Unfortunately, very few doctors work with T3-mono therapy. I don’t know of anyone in Europe since Dr. Peatfield retired. Most functional doctors only seem to focus on NDT which is a waste of money if you don’t feel good on it…!

[greygoose]

Totally agree with Sunflower64 . And I speak from experience. Levo just didn't agree with me and 'pushing through' just didn't work - I tried it for years, got up tob 200 mcg, got sicker and sicker. Yes, doctors will try and make out that you're some sort of oddity, that they've never met a patient who reacted badly to levo, and blah, blah, blah. It's all part of the act and the goal is to subdue you into obedience. Tell them where to shove it and do your own thing. Self-treat, take T3 only and take enough to make you well and you might find that the ME/CFS, AI, LS, and all the tra-la-la just fade into oblivion. Believe in yourself and your ability to do this. As one doctor said to me: you don't really need me, it's not that difficult. Once you've understood how it works you can do it yourself. And I do.

[Soloslim in reply to greygoose]

You make it sound so simple...

Great to hear you're feeling good though. Keep it up!

[greygoose in reply to Soloslim]

It is pretty simple - well, I've never found it to be otherwise.

How long do I wait to see if it's better or worse? Do you mean by testing or how I feel? I don't do blood tests. I know my body well enough now to know which way it's going. But if you do do blood tests, surely they can indicated if you need more or less.

[Soloslim in reply to greygoose]

I ment by how you feel. How long does it take for a new dose to "settle"? 1 week?

[greygoose in reply to Soloslim]

It happens pretty quickly when reducing, less so when increasing. But we're only talking tiny amounts - 6.25 mcg. But that's just me. It's different for everyone.

[jgelliss in reply to greygoose]

Feeling is believing. Symptoms over labs for me too please.Thank you GG.

[Soloslim in reply to jgelliss]

I totally agree. But when you change your dose how long do you wait to see if it agress with you? I suppose every change, however small, will cause some disturbance in the body (at least in mine). How long before it "settles" and you know it's OK or not?

[Soloslim in reply to greygoose]

Can I ask you: if you change your dose, how long do you wait to see if it's better or worse?

I don't now if I need less or more .

[Xcskier]

I had a similar experience as greygoose. T3 monotherapy was life changing for me. I struggled for years on T4 monotherapy that didn’t alleviate my symptoms, even though my labs were in-range. Before that, I was wired and tired on NDT. I personally can’t tolerate combination T4-T3 therapy and am grateful my physician makes clinical decisions based on my symptoms (although even she struggles with the fact that my TSH is below reference range on T3).

Your medical presentation sounds complex. Have you thought about seeing a physician who practices functional medicine? You might have more success than working within the conventional medical system. I did an internet search of functional medicine UK and it looks like there are lots of options.

[Soloslim in reply to Xcskier]

It is quite reassuring that you have a physician who isn't negative towards your treatment.

Over the years I have consulted several functional medicine drs here in Belgium and in the Netherlands. In short, they couldn't help me. Didn't understand why I was unable to tolerate the supplements and medicine they prescribed. One referred me to a colleague who was specialized in intestinal issues but he took 1 look at my file and said he couldn't do anything for me.

Thanks for thinking along!

[Incoguto in reply to Xcskier]

Could I ask you how are you taking your t3? Is it split, is it one dose? Did you move gradually from T4 to T3? Thank you 😀

[Soloslim in reply to Incoguto]

I take split doses: 3/4 tab at 07.30 AM, 3/4 at 12.30; 3/4 at 17.30 and 1/4 at bedtime. In total 62.5 mcg.

If I recall correctly I didn't make the switch gradually. I stopped the levo and started the T3 about a week later. It was a long time ago.

[Xcskier]

I split it into 2 doses. I quit T4 completely and added in small doses of T3 (2.5 mcg twice per day to start) and increased my dose every 3-5 days to tolerance (just below what would cause the jitters). It takes some time for all the T4 to clear out of the body, and the process took me about a month in total.