My GP listened to me and has prescribed T3 as a trial- 20 mcg initially, however following g a couple of crashes in the afternoon , this was increased to 20mcg twice a day. Felt like a new woman After years of feeling awful. Went to follow up appt at Hosp to see endo who was not happy that GP had given T3- inspite of me feeling better. Without any blood results (he couldn't find them on computer) he said that reluctantly he would support me having T3 but only with a view to my eventually coming off this????? Said I was having far too much- and asked me to reduce the afternoon dose to half. This I have done and don't feel good early evening. Have got to go back in 10 weeks. My family feel I need to continue to see endo as be is more knowledgeable than GP but I am frightened they will stop the T3. Don't EVER want to go back to feeling like that. Have wasted too much of my life already. Sounds melodramatic but it really has made that much difference.
Also told him I had started taking d3 d magnesium- he thought that was good but said liquid form was better than tablets - didn't need to do test ????. Sorry to have gone on but I need reassurance.
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Redjane
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One of our admins is taking a whopping 160mcg AND some NDT! 40mcg is not too much and is quite a normal dose to be taking.
I have to disagree with your family. Endos don't necessarily know more about treating hypothyroidism than GPs. Some know very little as they tend to specialise in other things such as diabetes. Ask your GP to keep an eye on your T3 levels and you should be fine without seeing the endo again. Some of us never get to see one at all, and that can sometimes be a blessing
It may be that you can eventually replace some of your T3 with T4 once you have recovered your health completely, but there is no reason to stop it completely. Some people find they need T3 only for quite a while in order to regain their health but can then replace some with T4 or switch to NDT. I wouldn't be surprised if you need T3-only treatment for a little while yet though.
The crash in the afternoon suggests that you were not on a high enough dose.
I would suggest asking your GP for the vitamin D and magnesium tests. You are probably fine as people tend to be a little low in these things but it doesn't hurt to get it tested to make sure you are not getting too much.
Don't apologise for going on. You have provided information so that we can help support you. If you think you have gone on a bit, you should see some of my past questions and blogs. The phrase "verbal diarrhoea" comes to mind when you read them
it's me taking 160mcg of T3 daily and recently added a little Erfa to 'top it up'
Unfortunately you saw a 'miserable' endo, not a good one 'at all'!!!
I hope he does not put your GP off from prescribing you T3, if he does I'd ask to go to a different endo for a second opinion and ask Thyroid UK for an endo recommendation who is 'open to T3 treatment'
Thanks both for your replies- I feel better about it all now. To be fair I think the endo was covering his back as there does still seem to be a lot of controversy re T3. (I forgot to say I am also taking 75mcg of T4)
don't be too nice on this endo, he's still 'miserable' as an endo he does not 'need' to cover his back with the use of T3, he chooses to do so hence he's not a good endo in my opinion.
I would find another endo. Give an Admin here a private message and ask for their list of NHS and private endos that have been recommended by members. Maybe there is one in your area.
I take T3 only and on my bottle the patient leaflet says that for "Mild Hypothyroidism" the normal adult dose is 25mcg - 75mcg
Including your T4, a dose of 40mcg of T3 is still within that.
What I dislike about your endo is that he didn't care about your symptoms or how much you had gotten better and he decreased your T3 without even looking at blood tests. He did it just because he personally "felt" it was too much. With zero evidence!!
...when your Endo said you were taking too much T3 - did you think to ask why he thought that ? As he didn't have a blood result showing your FT3 over the range indicating you may become Hyper - then he doesn't really have a leg to stand on does he - silly boy !
What is it with these so-called 'professionals' who want to decrease everyone's dosage? Seem to be reading more and more of this on here.
It may or may not help that my new NHS Endo will not prescribe more than 60mcg of T3 even though I've been self-medicating with 112mcg daily.
I think you really need to stand your ground and 'politely disagree' but the fact that your blood tests weren't to hand makes the situation quite worrying.
Who knows what a 'correct' dose is in these situations Redjane. Mine is prescribed by an endo too, and is coincidentially almost the same as yours at 2X20mcg T3 and 50mcg T4 daily.
Hope he's not going to seek to pull it next time around. Should this happen then it's back on the road to find a new doc..
It seems that despite the good results delivered by T3 in situations like ours we still basically have to rely on finding docs prepared to 'shade it' versus the stock T4/TSH protcol and blood tests.
It seems likely that it's the risk of legal and professional exposure (as well as that of causing harm) should anything go wrong that bothers doctors and endos in this situation.
This because despite the real world reports of improvements delivered by T3 based replacement it's still in mainstream (conservative) medical quarters seen as unorthodox. i.e. as beyond the stock T4/TSH protocol, and possibly beyond even the moderate use of T3 now more frequently entertained.
There's probably bureaucratic pressures from within the broader health system to stay with what is a simple one size fits all (cheap) treatment protocol.
The possibility is that if you were tested by another doctor that your bloods could deliver results outside of the standard reference ranges - perhaps the suppressed TSH and low T4 with reasonable free T3 that some seem to report. (I'm not fully up to speed on this)
Which if so would likely also be frowned upon by the same conservative/orthodox faction. Never mind that there's reports and experience all over the place that suggests that the blood values that leave patients well are in fact highly variable.
The prospect that regimes like these may work (especially in the case of those of us taking similar or maybe higher doses of T3 and running with highly suppressed TSH - perhaps because there's cellular level metabolic stuff that is compromised, and that needs some excess blood hormone present to help get it going) is a scary prospect to a profession with many members (and patients) that would prefer 100% risk free dumbed down guidelines that eliminate all requirement for judgement, and hence all risk.
There possibly (?) IS a theoretical risk that if one of these blockages was suddenly to be resolved that we could suddenly find ourselves hyper - but those of us that have struggled with hypothyroidism seem ready to accept it.
We've discussed this possibility before. It doesn't seem to come up in practice, and there's anyway a view that the risk of such an event is no worse than that of being left long term hypothyroid as a result of 'normal' stock blood tests. Not all will necessarily see it that way though....
What it boils down to is that it's a highly unsatisfactory situation. We fume at the health problems that this gap between protocol and what actually works often causes for us patients (about 15 years of hypothyroidism, loss of a management career and serious illness in my own case), but it's got to be a pretty disastrous scenario for individual doctors too.
It's serious stuff for them too though - the possibility of ending up in front of a fitness to practice enquiry or a court only to be found guilty of career threatening malpractice versus a deeply flawed orthodoxy has to be a pretty scary prospect.
It seems unlikely that there will be a practical solution until medical practice becomes such that individual doctors are permitted to treat patients on a co-operative case by case basis, and based on symptoms - and where it's understood by all parties that no treatment can be 100% risk free.
No heavily compromised and bureautically determined one size fits all treatment protocol can be risk free either - but it delivers a benefit to the system by laying the blame off elsewhere/leaving the individual doctor and the system in the clear should anything go wrong.
The pity is that while there's been lots of research published that undermines the stock TSH/T4 protocol since the 90s it seems to have been incredibly slow to inform clinical practice - or the professional guidelines that tend to underpin all of this....
Many thanks for all of the comments re my situation but I have now obtained the blood test results from my visit to the endo on 10th June. Although he did not have this info in front of him at the clinic- it would appear that he is right about the T3 result being too high. I am hopeless at interpreting the results and wonder what you all feel about them. I must say that I did reduce the afternoon dose to 10 mcg for a week on his advice ( therefore making daily doseage 30 mcg) but did not feel so good as when I was taking 20 mcg twice a day.
My results are as follows: TSH - <0.01mU/L 0.27-4.20 L
FREE T4 14.6pmol/L 12.0 -23.00
FREE T3 9.8pmol/L 4.0-7.8H
I would be very interested in what you guys think of the results and what you would do if you were me. Just do not want to go back to how I was feeling prior to taking T3.
OMG. Thanks for this link. Having read this - Dr Lowe completely contradicts what my endo has told me to do ie: proceed cutting down with a view to stopping T3 in the future. I will be printing this info in order to present it to the GP and to the endo when I next see him( if I still keep the apt) No doubt he will not take kindly to a view that differs from his but my experience of cutting down the dosage of T3 and then increasing it again because of feeling bad is exactly what Dr Lowe writes about(cycling). Also the side effects issue is one that the endo was very keen to frighten me with- again Dr Lowe would appear to disagree with this. All I know is that I feel worse when I reduce the dosage and better when it is increased. I have struggled for years and now I have experienced normality - I aint going to give it up without a fight.
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Do we NEED TSH on t4+t3? If so, why? Thinking of reducing T4 to increase T3? Antibodies normal for 18months, still hashi's?
Endo wants me to reduce T3 and raise T4
Why have they taken away my T3?
I promised an update - end of 4th week on T4/T3 combo... Feeling better...
