I posted yesterday asking for advice about how to prepare for an endo appointment this afternoon. I’d been put on a trial of t3 with a reduced dose of Levo. I’ve had a very stressful 6 weeks and wasn’t sure how the t3 had worked. I saw a different endo this afternoon at the clinic. He explained that he had an underactive thyroid himself but that there was no evidence that t3 treatment worked! We were off to a bad start! Then he told me that t3 treatment was very expensive but advised me that the next time I was abroad to buy a year’s supply of t3 meds! He didn’t seem very interested in how I’d been doing so I handed him a list I’d made of my symptoms (I’m very sleep deprived and was afraid I would forget) and he took some notes. Very little discussion but I asked if my tgab could be tested this time which he agreed to. I told him that I needed more t3 but he told me he’d wait until my blood results were back and he’d written to my gp. I explained that I only had a few days meds left and that last time the letter took over three weeks to arrive with my gp. He told me just to wait! I’m not hopeful!
Update on latest endo appointment to review T3 ... - Thyroid UK
Update on latest endo appointment to review T3 treatment
Her can’t just stop your T3 if you have been on it
The rules state that an abrupt withdrawal of T3 in unethical
I would email his secretary
I just emailed and call every day when I needed more
Read this and send a copy
sps.nhs.uk/wp-content/uploa...
3.1.1
Wow! That’s a very worrying document! He did say that there is little evidence that T3 works! I suspect I’m going to be self prescribing in future. I’ve only been on a trial and today was my first review appointment. I’ve been feeling terrible with increased hypo symptoms but not sure how much it has had to do with the stress or simply being under medicated. He says I can phone for my results in a few days she we'll see what happens then. Thanks for the info.
*Self medicating.
Yes, I am happy to self medicate but then they need to reclassify T3 so that we can get it over the counter/without prescription.
If you’re still feeling Hypo then maybe they haven’t put you on enough T3. I don’t really understand the whole ‘reduce T4 to start t3’ to be if your T4 isn’t high in range then keep it we’re it is and add some T3. Sometimes I think they reduce T4 too much.
My T4 was approximately 80% through the range and t3 about 34%. He thought I’d be better reducing levo by 25mcg and upping T3. I don’t think that’s too unusual? I’ll be interested to see latest results.
Hey Mickeydooley. No it’s not an unusual practise to lower T4 while upping T3. I’m just questioning it. If T4 is ‘only’ 80% then I don’t see the harm in it staying up there and adding T3. Just thinking out loud as you’d said you weren’t 100% yet. And T3 most definitely does work and your Endo’s am ejit 😩
Haha! I know he is!
I think the fact you have a trial of T3 on the NHS is a small miracle, but the endo needs to dose you appropriately, and the trial will be doomed to failure if the endo isn't prepared to find a ratio of T4 / T3 that works, and relieves your symptoms.
This can be very time consuming and if T3 isn't allowed / sanctioned long term by your CCG - it could just be a appointment of appeasement and a delaying tactic.
I read the ratio of T4 to T3 could be anywhere between 1/ 3 - 1/4.5 -
I've only ever seen one endo since RAI for my Graves in 2005.
I had to fight for the referral and early last year was refused a trial of T3 as my TSH was suppressed and my ratio of T4 / T3 was at 1/ 5.5 and deemed to be acceptable.
I guess it comes back down to who pays the ferryman ?
NHS staff are paid to reduce waiting list appointment times, not extend them.
I'm now self medicating and am finding a 1/4 ratio of T4 to T3 is around where I need to be to function and QOL.
Sorry if this reads a little sceptical and cynical, it's just my experience.
I’ve been trying to get a referral to an endo for years but my gp kept telling me there was no need as my results were normal. (I only found out I had autoimmune thyroiditis when I got private testing done.). The last appointment I had was with a different endo who was very happy to start me on a trial. I hadn’t had high hopes but he realised I knew about my condition and went ahead. I specifically asked to see the same consultant again but my request was ignored. The endo I saw yesterday, from the off, sounded like he wasn’t impressed with the initial decision. Maybe I’m wrong.
Yes, it's a match of 2 halves -
one half with the power to help and assist - whilst the opponent is someone feeling as though they are in some sort of obstacle race - even before the whistle blows !!!
I wasn't well enough to partake in any sort of rally -
Please don't underestimate or ignore your gut feelings - I did and shouldn't have as my fight with the NHS exacerbated my symptoms, ( Graves, post RAI. )
Now self medicating and getting better by myself.
The problem with ratios is that it brings it back to ‘specifics’ and ‘boxes’ which we don’t all fit in. I have 140mcg T3 per week and 1100mcg T4 per week so is that a 1:7.5 ratio?
That’s way over what is apparently the ‘norm’
I don't think there is a " norm " - I'm dosing to the relief of my symptoms and seem ok on around a 1/4 ratio, similar to that of NDT which is ground down pig's thyroid.
But that's ok, I haven't a curly tail, my vits and minerals are good, and so be it.
We are all dealing with different issues, guidelines are guidelines, opinions, and I'm just trying to help by sharing where I am in all this.
Yes. That was my point. My symptoms are relieved with my ratio but what is being punted about with the 1:3/4/5 ratio is not helpful. It may be a good starting point for an Endo but it’s being used against us also. (Like everything) 😩
I understand and I think it must be very difficult to manage Hashimoto's Disease. Sadly the medical profession seem to ignore the anti body component of the both auto immune thyroid diseases, Graves and Hashimoto's.
Ultimately your thyroid will be destroyed by the anti body attacks but in the meantime trying to find a balance of T3 and T4 to provide some QOL must be a challenge and as your thyroid tries to recover and become more stable, I presume you need to be constantly adjusting and rebalancing the thyroid hormone support medication accordingly.
It is a challenging time for so many of us, and much like Graves, which I have, I too feel let down, disappointed and disillusioned by the lack of help and support within the NHS medical profession.
If he is not giving you any more T3 is he giving you more T4meds ?
I really don’t know yet until I get my blood test results back. He hasn’t said he’s taking me off the t3 yet. He just told me that he wouldn’t make any decisions until he saw my results and would write to my gp. (As I said above last time that took three weeks and I had to chase it up. I told him I had only enough t3 left for another week at most). I will insist that if he takes me off the t3 that my Levo is increased at least!
I understand that. You said you only have a few days of T3 meds left and it could take up to 3 weeks to hear from GP why didn’t the Endo give you a higher T4 script just in case?
No idea but I have extra T4 meds.
It's easy enough to dig up evidence that T3 does NOT work. Here's how to design the research project:
1. Make no effort to measure serum free T3 before starting the treatment.
2. Continue to remain ignorant of serum measures by not testing during or after treatment.
3. Give everyone the same dose of T3, and make sure it's a tiny one.
It is my firm belief that when a patient NEEDS T3 (because his/her own supply is very low), then T3 improves symptoms. If the patient doesn't need it, symptoms will either stay the same or change into hyper symptoms.
The amount needed is very individualized. T3 is a hormone. It may be possible to standardize dosages for such things as antibiotics (although often more than one round is needed to fully wipe out an infection), but not hormones. Look how different the needs are for insulin.
Box 1 on page 8 lists a number of possible causes of continuing symptoms after the patient is "euthyroid" (i.e., TSH is in range). Notice that beta blockers, statins, and opiates are in there. Often prescribed, sometimes by the same doctor that's treating you for hypothyroidism.
It's rather maddening that doctors prescribe statins to patients they are treating for hypothyroidism, when high cholesterol is actually a symptom of undertreatment for the hypothyroidism.
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