For about two years with the support of this forum I’ve monitoring my Free T3 levels and consistently been shown to be an extremely poor converter.
My private endocrinologist however, is a great believer in alternative medicine and I have (sceptically) co-operated with his treatment plan for about eight months now
Following a blood test this week that once again confirms my poor conversion rate, I am due to contact him again shortly. I am concerned however he will persist with his current approach in which I have now lost all faith.
Advice please!
i) What approach should take with this gentleman to improve my chances of a more orthodox treatment or:
ii) Should I start again with someone else? If so:
Am I confined to the private sector or is it permissible to contact an NHS specialist without a GP’s referral? (my GP sees few patients in person but once, when he did see me pre-covid, advised me to identify and contact a private endocrinologist to obtain Lio)
Thank you so much, you good people have been an invaluable support to me fora long time
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weewillywinkie
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Obviously the decision on how you wish to be treated is up to you but when it comes to thyroid disease I would not be using alternative practices. Your words suggest you already know what you need to do!
If your conversion is poor you need replacement hormone
Your GP appears to understand that you need T3 but his advice has led you "up the garden path"
Suggest you walk away...or ask this endo for proof that alternative thyroid treatments work and when he struggles to answer go and find a clued-up endo!
i) What approach should take with this gentleman to improve my chances of a more orthodox treatment
Your blood tests have proved poor conversion. Presumably you have copies, have you shown them to your private endo and discussed poor conversion? Remind him, or tell him if you've not already discussed it, that your GP is on board with you having a trial of T3. Tell endo that despite 8 months of following his advice you have not improved and due to proven poor conversion will he give you a trial of T3. If he's not willing then let him know that you can no longer continue paying for treatment that is not benefitting you and that you wont be seeing him again.
ii) Should I start again with someone else? If so:
Am I confined to the private sector or is it permissible to contact an NHS specialist without a GP’s referral?
If you are unwilling to spend any more money on treatment that is not benefitting you, and your current private endo is not willing to give you a trial of T3, then yes, you the most sensible thing to do is see someone else.
I believe that if you have already seen an NHS consultant previously then you could probably contact them (I know some lung patients have done this) but if you are trying to get an appointment with an NHS consultant it must be via a GP referral.
Well I don't know what alternative treatment you are referring to but if it's not working for you, there's little point carrying on - is there.
I don't know the ramifications of stopping the alternative treatment cold and suggest you talk this through with your doctor who likely needs to reinstate your T4 prescription in the short term while you look for another specialist in this field.
As I understand things some CCGs are now " reinterpreting the guidelines more favourably " and this might be a better time to get treatment through your NHS endocrinologist which must be the first option and not to face the costs of going private and again, your doctor is more likely to know if this is an option in the first instance.
Do you have the Thyroid UK listing of recommended endos and specialist both NHS / Private to look through and is there anybody within a sensible commute and you can ask for PMs on any person you are considering seeing or ask for recommendations within your commute if the list doesn't cover your area.
It might be a good idea to run a full thyroid blood panel so you know exactly where your thyroid and vitamins and minerals now sit, and if you post these results and ranges we can start you off on the basics whilst you wait for an appointment with both your doctor and new specialist.
I purchased T Convert through Nutri Meds did nothing for me -
Since we've both had RAI and " lost " our own T3 production the logical answer is to add back in some T3 - Liothyronine to your T4 meds or switch to Natural Desiccated Thyroid which contains all the same known thyroid hormones that we have had destroyed by having ingested this toxic substance.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus around 10 mcg T3 and around 100 mcg T4 :
T4 is inert and a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and is said to be around 4 times more powerful than T4 with the average person needing to find and convert around 50 T3 daily, just to function.
Your conversion can be compromised by low vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D plus any physiological stress ( emotional or physical ) , inflammation, depression, dieting and ageing.
However if you have lost your own T3 production, you have the additional issue, as you can't easily kick start the process of metabolism and conversion, when you haven't a little T3 to start the process.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 4.50 with most people feeling at their best when they come in at around 4 or under :
So to find your conversion ratio when on T4 only you simply divide your T3 into your T4 and I'm getting yours at 5.28 so very wide showing very poor conversion which is to be expected when you haven't any of your own T3 to kick start the process.
This endo takes an oath " to first do harm " but he's not doing anything .
It is obvious you need a trial of T3 so he is either out of his depth and doesn't know what he is doing or not allowed to prescribe T3 for fear of being hauled up in front of his superiors.
I would ask him outright, you've nothing to loose : it is simple ridiculous - I have no words.
I gave up trying after my first endo appointment some 10 years after RAI - and very unwell :
At around 70 - with less time on my hands to waste - I started self medicating and haven't looked back and have my life back :
Well I just went and put on my nightgown - but I doubt you mean this !!!
Thank you - I hope I've thrown some candle light your way :
Yes, this is actually well past my best before time of day - must be something in the water - or more likely the full spectrum thyroid hormone replacement I now take.
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