Should I be dropping the T3 and just taking Erfa. Any comments please from anyone, regarding this?

Hi everyone,

I'm really enjoying the sunshine. I hope you are too (that's if you are in the UK).

Well the latest visit to the boss of the last Endo I saw revealed the following results, but not much further forward with the NHS.

Free T3 - Range 3.1 - 6.8 pmol/L Result - 15.3 pmol/L

Free T4 - Range - 12.0 - 22.0 pmol/L Result - 7.8 pmol/L

TSH - Range - 0.30 - 4.20 mU/L Result - <0.01 mU/L

So as you can see I am way above on the Free T3, but quite a bit under on the Free T4, and the TSH is suppressed. I am now taking 60 mg of Erfa in the morning with 25 mcg T3, and the same again in the evening. With this combination for the last 7 weeks, I have felt considerably better with almost complete disappearance of some symptoms, although still fighting some physical and mental fatigue, as well as mental fog, (this may be due to the low iron ferritin). So given these results, should I be dropping the T3 and just taking the Erfa, although when I tried to do that before constipation got really bad again? Needless to say the Endo has no advice for me on this.

The Endo also did a short Synacthen test, and this is the result: -

Cortisol - 1230 - 488 nmol/L before injection

Cortisol - 1300 - 731 nmol/L 30 mins after injection

The Endo says that this is perfectly normal, and that there is no issue here at all. I don't trust their judgement, due to previous experience. Any comments please from anyone, regarding this? Many thanks,

Grace

6 Replies

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  • As you get your iron sorted out you may well find you need to reduce your T3 or Erfa a little. Iron is needed to get thyroid hormones into the cells to be used. Your high level of T3 might be because of your low iron and not enough T3 getting into the cells. You might find once your iron is sorted out, your body starts using more. Do listen to your body though and reduce if you think it is necessary. Perhaps take your temperature regularly. If it is high you might want to reduce your dose.

    As for the synacthen test, it only tells you if your adrenals are capable of responding, which yours clearly are, but not what is happening to your cortisol levels during the day. A 24hour saliva cortisol test would tell you this. It is useful to know the results of the synacthen test though.

    Sorry I couldn't be more help

    Carolyn x

  • Cheers, Carolyn

  • Am afraid when ever you take T3 whether on its own or in a natural desiccated form thyroid blood tests will not be accurate. Your endo should know this but sadly they rarely seem to... Your Endo needs to go on your symptoms and signs and medicate accordingly. So don't be put off by the high T3 level -go on how you feel :) x

  • Thank you, waveylines, I quite agree. What you say is helpful and reassuring. The Endo or the GP are not interested in symptoms and signs at all. I gave him a list of my symptoms on paper. I don't think he bothered to look at it. In fear, I have dropped the T3 altogether in the last few days, and just take Erfa (NDT), 2 grains in the morning and 2 grains in the evening, but I've started feeling worse than I did before. The fatigue has increased and bodily aches have returned. I've also had to go back on adrenal glandular, as low cortisol symptoms also returned with a vengeance. I don't know if anyone else does T3 and NDT mix, as I've only known cases of people on T3 only, or NDT. I would love to hear from people who are doing a combination of both. Thanks, Grace.

  • Hi Lindy -oh that's awful that you are feeling so rough as you feel you have to compromiswyour health incase the consultant says something. about high T3 levels. the thing is T3 is so quick acting that your blood levels will fluctuate widely during the day. It is impossible to go by the blood tests -your consultant will get widely conflicting blood test results.....hey ho. It is tempting to take some research along but do you think that the consultant is the type to read it or take umbridge?

    I haven't taken NDT & T3 together but there definitely are people out there who do.

    The only other thing i can suggest is that you look at the usual vits and minerals that are often low in hypothyroidism and need to be supplemented to ensure best uptake of the thyroid meds......you probably have already done this but just thought I'd mention it incase you weren't aware. hugs x

  • Thanks waveylines, I do already take vits and minerals, but thanks for the thought. The Endo's not really interested anyway, and he's now dismissed me from his care, saying I needed the low ferritin investigated by an endoscopy. I'm not convinced. It gets very tiring, especially when you are struggling with your health anyway, fighting an uphill battle with the NHS. I'm thankful I've got my faith to help me, otherwise I wouldn't know where to turn. By the way, I've now restarted T3 again after your comments and worsening of symptoms. I was just hoping I would be able to manage on NDT alone. I have to take some NDT with T3 in the morning, and then again in the evening. At least I am not having to take T3 every 5 hours which I had to do before. That's a great improvement. Thanks and best wishes, Lindy.

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