I had the phone call with the "Endo" just now. I am sure I will calm down in a minute...
I looked him up and he is a Diabetic specialist. I asked him and he said " I only deal with Endocronology". He then started on about how taking T3 is dangerous, as it does not slow release, and where do I get it. I told him my GP who has since retired gave me the prescription as he could see T4 alone was not working. He said I had been on it too long and he would be stopping it, and I just said No. He asked if I knew the risks and rolled out the old stuff, but I said I was more than willing to take that risk.
All I wanted was a blood test to include T3. He said he would send the form, but even he could not request it from the lab!!! I asked him how he would feel if the lab only tested urine for diabetics. That stumped him!
He then went on to say I dont have Hashi's, and by looking at my results I have "sub clinical hyperthroidism. He was looking at my blood results from a year ago (TSH - 0.01 T4 - 14 (11-22)). I offered to send him some papers about the feed back loop not working after a while but he declined. He assured me that the TSH was the only "real test" to which I said rubbish!
Not once did he ask how I was feeling. We left it that we would "try" for a full blood test and he would contact me again in 8 weeks (no change of dose). He did mention that someone in Cardiff was doing research into a slow release T3, so how difficult is it to add a slow release coating to a pill - lots of pills have this.
Anyway, the good news is apparently I dont have Hashi's! I think he was glad to get off the phone, and he certainly was surprised that I questioned his judgement.
And deeeeeppp breathhh...
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serenfach
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I was diagnosed with Hashi's 17 years ago. This followed a medical accident where I ended up on life support, and an overdose of contrast medium for a scan. I was told by my GP to "come back when you know what is wrong with you" after a number of GP visits, feeling increasingly unwell. When I saw I had developed a goitre, I knew, and my TSH was 27.
So did he lie about not being able to ask for a T3 blood test - are they banning them altogether? His profile on line says he is a diabetic specialist, so he lied about that. Is he really so arrogant that he thinks people dont check? I think I shook him a bit when I quoted the NICE guidelines did not fit with the LAMS guidelines.
I got the feeling he thought it would be a short "we are taking the T3 away" phone call. He was getting a little terse by the end. I pity his next patient!
I went and chopped some wood to calm down. Nothing like swinging an axe to shut down the adrenaline! And I will be warm tonight!
I bet you've been labelled as a "difficult" patient lol. How these egoists hate being challenged. I also bet they curse the internet and forums like these 😆
Serenfach I'm still digesting your astonishing post but wanted to say I'm in Wales (Aneurin Bevan) and my gp tested my t3 this summer. So they can do it.I'm in awe of your knowledge and ability to retain it in the face of an ignoramus with medical power.
Good for you for standing up to him. Endos do both but tend to specialize in either diabetes or thyroid, and too many are diabetic doctors. Did he elaborate on the dangers of T3? My diabetic NHS endo said I'd have brittle bones and was at risk for dementia - she was full of herself.
My TSH has always been zero for the past 20+ years. My bone density is good for someone my age (I did the bone density scan she prescribed). I refused to see that endo again as 95% of what she said proved to me she knew very little about thyroid except the TSH test in her opinion is the best test....she did not take into account my symptoms either....Most of these endless haven't got a clue about thyroid.....that's why I go private. My health is worth it.
The GP wanted me to see another one for a 2nd opinion. So far, I've canceled two appointments with ENDOs who are diabetic specialists.....the letters for the appointments wanted me to bring my sugar test results ( or whatever the name it is for what diabetics have to do). I was told they do both and could help me....I stood my ground and said I want to see an endo specializing in thyroid... I have Hashimoto's and need a Dr. who understands that...and the fact that I am a poor converter from T4 to T3.....Still waiting for a third letter for an appointment....lets see if it's another diabetic specialist. I'm not willing to see any doctor who dabbles in thyroid and thinks the TSH is the bee all and end-all.
I wonder if they're any better at helping diabetics. Based on a lot of what I see online, they aren't because they still insist that patients eat carbohydrates by the boatload and titrate the drugs to match the rises in blood glucose consuming these cause. It seems none of them has heard of a low carbohydrate diet. That's what my neighbour does with her insulin. Up and down up and down..... not a healthy way to be but she's one of those people you don't mess with if you want to retain your body parts.
Low carb diets are often high fat diets, and doctors are horrified of fat. Years ago, I switched from margarine to butter after reading a horror story about margarine. Since then, countless doctors have told me I risk a heart attack, blood clots, clogged arteries and dementia due to the saturated fat in butter.
What a freaking nightmare this is. I have no doubt that your endo will be writing a shitshow of a letter to your GP, who will now start trotting out the same nonsense. In your moccasins, I would be doing my homework to find a T3 source myself - worrying for you that this is the first nail in your NHS-supplied T3, honestly.
Don't fret. Courage! Take action, find your own T3 and these antediluvian buffoons can do one. 🤬
I went to see a young endocrinologist this year. His people skills are severely underdeveloped but I stood warned by a friend he is treating for Addison's disease. Yes, real Addisons. Her cortisol was almost zero.
I had high hopes that he is up to date on thyroid information but alas that is not the case. Fortunately he already had my bone density report (high normal, age 65) and my ECG (perfect). He was blathering on about the suppressed TSH and that only TSH counts, the fT4 and fT3 are of no value according to the CEO of the big laboratory we have here in Canada. Then why bother to have tests for them? The CEO should just eliminate them from what they offer to test. (Honestly, this was surreal listening to this guy who according to information online has been the recipient for an award for excellence.)
I take 150 mcg T4 but added 12.5 mg T3 (self sourced) and reduced the T4 to 6 days per week. Before the appointment I had been discussing with myself in my own head if I should confess that I've added the T3. But after sussing him out and how he was quoting his medical school lectures to me, I decided the wise course of action was to not volunteer information.
After challenging him once he'd finished his blather about atrial fibrillation and bone density he ended up deciding that my dose should not be changed.
Recently I ended up with an incredibly painful and disabling sciatica. I hobbled in to see one of the original GPPs (retired but filling in when needed) at the practice. The new one is quite useless but I am training her. This older doc took at look at my thyroid test results and suggested a retest based on the TSH. I told her, take a look at the fT4 and fT3: both are eminently normal. That is true she said so let's forget about a retest. (Hallelujah).
I asked the young endo for a requisition to check my cortisol but as horrendous life events (sciatica) occurred, I am taking prednisone. Therefore, useless to test my endogenous cortisol level.
Sorry to hear that you've been in pain and have had to listen, additionally, to a pain in the butt. Keep waving the Maple Leaf flag, gabkad. My 'we ❤️the NHS' flag is a bit tattered these days, as are the flags of many with chronic complaints in the UK. Head down, trudge on.
My neighbour got pain in her left leg and low back. I told her it's sciatica and she needs to stop doing the sorts of things that were fine and dandy at age 55 but not at 75. She didn't want to believe me when I explained how she got it so this village idiot (me) over here lifted the bed mattress on her (my) left knee in order to really really get the fitted sheet fitted nicely. In the process I twisted my low back. I went around the whole bed like this and was happy with the result. But alas, a number of days later, I got up and was not able to walk! OMG! I've had so many crazy things happen to me in my life but never have I not been able to walk.
After a few days I rented a wheelchair and my neighbour of sciatica fame wheeled me down the street to the walk-in clinic.
Later I told her 'you see what I did? I demonstrated to you how a person gets sciatica just so now you'll believe me when I tell you how you got yours. I have sacrificed myself on your behalf.' LOL! We had a great laugh. All tongue in cheek......
And then I found out that two other women at the allotments got bad sciatica this summer and I think maybe this is contagious!
When it comes to slow release, coatings typically just delay release. For example, to stop stomach acid affecting the 'payload' medicine they apply a gastric-resistant coating which has the effect of delaying release until it has passed beyond the stomach.
The fancier slow release mechanisms do genuinely release the payload more slowly. But it is not simple to create a tablet which releases its entire payload in, say, 6 or 8 hours. Which is the main aim of a slow release T3. Especially as it is passing through parts which have different chemical make-up - starting acidic, then going alkaline, etc. And any food having all sorts of complex interactions.
If any payload doesn't get released, it results in under-dosing. For some things that is possibly fine. For example, where the exact dose isn't so important and enough gets released to maintain a level high enough. Imagine a slow release paracetamol.
My own view is that slow release tablets are possibly a dead-end - with something like an insulin injector or a subcutaneous depot mechanism being more likely to work with the necessary precision.
Top science bit from helvella there. Have you been to Exipient World, Rod? excipientworld.org/ it's taken over from the beloved and missed ExipientFest!
But I have noticed lots of work on oral solutions - some of which have been tested for levothyroxine. Hopefully much better than current glycerol, etc., and possibly less expensive?
Thanks for explaining that - I did not realise the science was so complicated. He kept saying it was dangerous to have all the T3 at once, but I put him off saying I split the tablets. If it is so dangerous, why not make tablets of say 2.5 and tell us to take them through the day... OK, I am being logical, I must stop that!
There was a long pause after I suggested that those with diabetes should just get a urine test. This shows sugar in the urine, but not the levels. I said you give a blood test to get the full picture, right? So why cannot those with Hashi's, sorry, sub clinical hyperthyrodism, get the full picture?
From reading how individuals react to T3, I am convinced that there are (at least) two groups. The ones who seem best off taking it all at once, and those who cannot tolerate it all at once.
Imagine your dose is just enough to provide one molecule for each cell.
If you take it in one go, and each cell picks up only one molecule, all is well with a single dose. But if each cell picks up as many molecules as it can, then some will get many molecules and effectively over-dose - and some none.
I hope it's obvious that is just a mental picture - not any sort of reality!
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Hashi's or not.
What to tell GP about taking T3? 
My Endo didn't listen to me, what do I do?
