T4 causing problems

Hi everyone,

I wrote a few weeks ago about my endo. requesting I added T4 to my T3 only meds. I have been fine on T3 as long as I don't over do it and I am having regular reflexology, in which I know I am improving.

So got called in to the GP who persuaded me "just to add a little T4 and see how you go.". I was to take 25mcg. T4 for 4 to 6 weeks. I wasn't happy but like my GP and knowing he was under pressure agreed.

Started adding T4 and reducing T3 and within a week I was beginning to feel unwell, vague symptoms, tight chest a little loss of balance, (the reason they took me off T4 as I fell in the shower.) I had arranged a talk for my local group with the stork ass. He checked my blood pressure which was very high.

I stopped taking the T4, all symptoms went away. They doctors had stopped my repeat T3 prescription and I couldn't get an appointment with my GP, even a phone call was a four day wait. Luckily when my bloods came back he called me in.

My GP doesn't know why I can't take T4 and is worried about my heart (endo. says that's why I needed T4) and has referred me to Derriford, Plymouth as he doesn't want me to see the fire breathing dragon in Truro, and I have agreed.

My problems are, don't know anything about the endos in Derriford and how do I explain to them that I don't want, don't need T4. I've got my T3 back for the time being but don't know how long for.

14 Replies

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  • Beaton,

    Write an account of the symptoms and bp levels you experience when taking T4 and how they resolve when you stop taking T4 and switch to T3 and show it to the new endo.

  • Thanks Clutter, good advice as usual. x

  • If you add T4 to a T3 dose that is already doing well for you, it can partly inhibit T3 uptake into the cells, so you don't get the same benefit from the T3 dose AND you may also have deficient T4-T3 conversion which makes things even worse. If you have been on T3 only for a long time, your body's working has adjusted to it and, if you've no active thyroid left, the whole system is geared to accepting T3 alone. Changing things can be difficult for the reasons above.

  • Thanks Diogenes, I didn't know all of that.x

  • Diogenes-how I wish I'd read your reply before I tried adding some NDT to the T3 I had been on for over a year.I had experienced big improvements mentally & physically on T3-only.Wish I had left well alone now & ignored the scaremongering about T3-only.I did 2 trials of 5 weeks,with a few weeks in between.I immediately experienced a return of ectopic beats,episodes of tachycardia & a return of chronic anxiety.

    It seems to have triggered a return to a state of chronic anxiety with depression which is not shifting.

    my GP wants me to take SSRIs but I can't cope with the side effects.Got thyroid test results next week,including FT3 if the lab don't refuse to do that one,in which case I will use Blue Horizon.

    I am waiting for my appointment with the endo who prescribed my T3,to see if she will agree I cannot take T4 after 18 years of failing health culminating in a 2 year depression with chronic anxiety,followed by 2 years chronic fatigue.

  • Do you know if this is a matter of them being uncomfortable w v low t4 results? I wonder if Dr Lowe's archives might be of use to you to show the endo that t3-only treatment will not kill you. I wouldn't suggest quoting Dr L because he was considered a dangerous lunatic by conventional medicine, but quoting some solid original sources might get them off your back.

    I do wonder if it would be possible to compile a database of endos who will prescribe t3-only if that is not already included in the TUK list. If some of them find it acceptable they must have reference material which makes them ok with it.

  • Hi Puncturedbicycle, When I have bloods done they are "all over the place.". I don't know if this is the reason my endo. wants to add T4 or if it is cost.

    Whenever I ask questions I never get a straight reply from the endo. and I know my GP wants to help but feels it's beyond his scope

    I shall have to read up on this, I know there is a lot out there. x

  • Apologies I meant to say I don't have the link to the archives but someone else will. Clutter maybe? There is, I believe, an admin who sometimes posts them.

    I guess it is logical that your t3 is 'all over the place' because t3 is more, er, is volatile the right word? Variable? It fluctuates.

    It is tricky. A lot of folk are just having their t3 taken away from them just like that, so I'm inclined to think they *do* believe that you need it (otherwise why not just say nope, we're not doing this anymore, as they don't seem to need to give you a reason why they're stopping it). So I see why you don't want to burn bridges.

    I wonder if this is a case for writing a somewhat effusive but firm letter saying you're grateful for the t3 script and you understand that it is a non-standard treatment but you have been very cooperative and compliant, you want to stay friends w everyone and have done what they asked and considering your reaction to levo (detail the specifics) you just can't risk your health any more. Something like that? You could conclude that you just want to understand the reasons for trying to introduce an alternative treatment so you'd be grateful for a clear answer you can understand. That way it is all on your record, that you have a bad reaction to levo, what the reaction is, what the endo is doing about it, what their reasons are etc.

    I don't think this is a bad idea but I do hope someone will weigh in if it is. :-)

  • Thanks puncturedbicycle, good idea to write. x

  • Is that the endo's phrase-"all over the place"?Endos don't seem to understand how to interpret blood test results when people are on T3 only,even when they have prescribed it!They seem to take fright when they see them.Have you had a copy of those results,& posted them here?The point is,though,you were doing well on T3-only,but that seems to count for little with most GPs & endos

  • Beaton,

    You could test whether you have DI02 gene mutation. If you have it would explain why you cannot take T4 and it would give your GP grounds to carry on with your T3-only prescription:

    thyroiduk.org.uk/tuk/testin...

    I've heard that Dr Patrick English from Derriford is really good. He has been known to prescribe ndt and T3. Hopefully he is still around and he hasn't retired yet. It's your right as an NHS patient to request a specific doctor and they should comply as long as he is available (I refused to see a specific GP once and GP surgery complied without any fuss).

    Good luck!

  • Thanks Kitten, will try to get Dr. English.

  • All endos in every country do not have this fairy-tale based opposing T3: link.springer.com/article/1...

  • Thank you, worth noting.x

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