Stop the madness!

I’m feeling pretty lucky.  It’s been almost 2 weeks since I adjusted the thyroid medications (see last post) and I’m continuing to feel pretty good.  I still have some odd complaints, aches in my hip and back and my hands are usually still achey in the mornings but I’m sleeping really well and waking up feeling refreshed which is such a huge treat!

I saw my usual doctor on Thursday and had a good chat with him about the results versus my report.  If you look at my thyroid panel, the TSH is now almost completely suppressed, my T4 is below the normal range and my T3 is at the higher end of the range.  If I was to present at a GP like this they would be concerned but my doctor seems happy to allow me to continue taking T3/T4 combination as long as this feeling persists and I don’t experience any hyper symptoms of racing heart, sleeplessness, weight loss etc.

It suggests to me that there is not ‘one size fits all’ in this field of recovery and I discovered this also in a recent interaction with the Facebook group for Stop the Thyroid Madness.  They have many pages but the one I joined is listed as below:

FTPO AUSTRALIA THYROID group For those in Australia who want a friendly and informative nature to their discussions! (allegedly!)

Still having not read the actual book because it’s always out and being transferred around libraries for other holds, I read the website and joined the group and have been on it for about 6 months.  There were maybe 3 admins attending to the group and it was clearly a lot of work if the amount of snippy posts about ‘not using the reply function’ and ‘all admins are volunteers’ were anything to go by.   I posted my results and asked for discussion around feeling good when T4 is low and was not permitted to have any discussion!  One admin just threw up a whole bunch of links to the website, told me I was ‘pooling’ and refused to let anyone else comment.  So I left.  And then subsequently got blocked (you know how you can tell because all your history disappears).  Musing on this exchange, and realising it was only one person, clearly dealing with their own health issues, it struck me that the STTM method is as rigid as doctors who advise you are in the ‘normal range’.  There seems to be no in between.  STTM suggest if you do not have levels in the optimal range that you will not be healthy, but I am showing good signs of recovery and I have also seen them say similar things to other people on the group asking for advice when they feel good. Worried that they are not going to continue feeling good.

I emailed the writer of the book – Janie Bowthorpe – letting her know what had happened and my results with T4 (they say on their page it doesn’t matter what time you take T4) but she just replied ‘thanks for letting me know about the T4’.  Clearly not interested in opinions that differ!

Frankly, I’m glad to be rid of it.  For me this is hopefully going to be a period of recovery with an ability to feel confident in my strength and also relax, worry less about the future and enjoy life more.  Checking and reading posts about illness is not a good way to immerse yourself in a positive environment.  I feel for those admins and wonder if they recognise what they are doing to themselves.  I would think the interaction I had with one, suggest she needs a break too!


4 thoughts on “Stop the madness!

  1. Lyme.Co says:

    I’m glad you are doing well. I have had similar issues on websites related to recovery from illness. There are a few pieces of good info here and there and then a lot of people behaving badly and acting as if they are the only source of info out there about whatever it is. It’s kind of like religion. My way or the high way. I think the combo of T4/T3 is so individual that there is really no one size fits all.

    Liked by 1 person

    • CJ says:

      I agree completely and I am sure there are things going on that we/medicine don’t know yet! I try to assume these people are in pain and on their own journey so I don’t take offence. I’ve found another group that is public – amazing how when everyone can see what you write (like wordpress), the caring and sharing seems to be 100% better. 🙂

      Liked by 1 person

  2. mypaceoflifeblog says:

    Is your T4 considered pooling when it’s low… I always thought pooling meant to was on higher end of the range or above it. These terms are all confusing to me. I am happy to hear that you are doing better and found a doctor that doesn’t just go through the motions

    Liked by 1 person

    • CJ says:

      I think that ‘pooling’ is a term made up by the STTM people which has no definite basis in chemistry and exists just the explain something they can’t. I have never been able to understand their rationale…


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