A little confused!

I went to a private endo because of my extreme breathlessness. He thinks I'm over medicated, which I had sort of suspected.

I was taking 4 grains of Erfa, split into 2 twice a day.

He says, going by my body weight, I should take 2!!

This alarmed me! However, I did cut down, just not as drastically as he suggested. I wanted to do it slowly. So, I got to 3 and a half and felt awful. Back to the old days...snapping at eveyone, argumentative...depressed. The list goes on. So..back up to 3 nd threee quarters! Could I really be that sensitive to such a slight change?

Just been for a heart scan for my breathlessness, and that Dr thinks I'm over medicated too!

Don't really know what to do!

4 Replies

  • I managed to have a look at one of your former posts where you posed a similar question - but I don't think anyone asked what your results actually were on 4 grains??

    Do you have TSH, FT3 and FT4 results to hand on that dose? Was wondering whether your private endo was still one of those who thinks TSH shouldn't be suppressed, even if FT3 is in range... You can't really dose NDT by body weight - it's not that straightforward. 

  • my TSH was 0.01 (0.27 - 4.2)  

    Free T4 23 pmol/L (10 -24)

    Free T3 15pmol/L (2.8 -7.1)

    But, when I had blood taken, I had taken 2 of my Erfa about 1.5 hours earlier. Does that make a difference?

    Yeah, I'm not keen on this Dr telling me to cut back to 2....I was a mess on 3.5! 

  • I can imagine. When you've been stable on a dose for a while, it makes no sense to make to make a drastic slash to it. Dropping half a grain might have been warranted. Halving your dose almost certainly wasn't! As you took your Erfa before the test, the FT3 would have read artificially high, though I'd guess that it would still have been significantly over-range even if you'd left it 24hrs before testing.


    There are lots of people here whose blood tests would look outrageous to those peoples' GPs. Dr Lowe used to say that blood tests are meaningless once someone is taking thyroid hormones and that they're only really of use when someone is first diagnosed. It might be that you have T3 resistance - that you need high levels of T3 in your system to saturate the cells enough for it to do its work.

    It seems a little too easy for them to assume your breathlessness is due to high thyroid hormone dosage. They like obvious solutions because they don't have to work for any other diagnosis then... 

    Are you anaemic? Has anyone tested your Hb AND your ferritin levels recently? If so, do you know what they are?

    Has anyone tested your B12 levels recently? B12 deficiency has "breathlessness" as one of its main symptoms (as does iron deficiency anaemia). See pernicious-anaemia-society....

    Both ferritin and B12 deficiency go hand in hand with hypothyroidism, unfortunately. I wouldn't be at all surprised if your levels were on the floor. Your B12 was low when it was tested a year ago. If you haven't been supplementing, it would most likely be lower now. Plus your folate was low - and B12 needs folate to work properly. Having levels of either B12 or ferritin just inside normal range for either of those would leave you feeling dreadful. Ordinary multivits won't bring those levels up - they need megadoses.

    Finally, did you ever get started on Vit D supplements?

    It's all too easy to think that vitamin and mineral deficiencies are minor issues compared to "big guns" like getting enough thyroid meds - but B12 deficiency is very real and seems to be on the increase.

  • Thank you for that. Makes a lot of sense. I'm going to get my vitamins re tested. I actually didn't start on any. 

    The recent endo that I visited suggested I do the atkins diet. I did try but the mood was pretty low anyway after dropping half a grain of Erfa. After a week of Atkins I was really not doing very well. I have quite a difficult job and need to be 'of sound mind'!

    The endo also requested that I have some tests done, just to rule out anything obvious. I have a heart monitor on as we speak. I also had a heart scan yesterday. That Doctor did say my heart was beating fast, also that I may have fluid on my lungs. But he said he was pretty sure my (extreme) breathlessness was thyroid related.

    I now have not much faith in the endo that I went to in the first place though. Not sure where to go from here.

    Do you think if I persuaded someone to swap some of my Erfa for T3 that would make a difference?

    Going to go through all of the supplements I already have in the cupboard!

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