Going private?

[Capperl]

Hi everyone, I've been having an uphill struggle with my thyroid and medication for the last four years. Originally I was diagnosed with an over active thyroid (hyperthyroidism) and then had radiation to try and swing my levels back in the right direction. Since then I've now got an undereactive thyroid, and have been on all sorts of doses of levothyroxine for the last two years. I really didn't get on well with it and have put on three stone when I excercise and eat well. It's really depressed me and I have not felt like me for years. Always tired, lethargic, hot and my hair falling out. After being at a real low point my endocrinologist (who is a nice guy deep down ) put me onto liothyronine after me begging and crying out to try this. Literally overnight I felt so much better. I have been on it for 3 months and I'm slowly losing weight and feeling like me again. Of course the dreaded conversation has been held saying I need to come off of it and just stick with the levothyroxine! That's like someone telling me you might as well throw yourself off a cliff!!!

I am desperately trying to source stuff online but find it baffling and I don't want to try something which may be harmful. But I am desperate too?! Anyone that has sources please could you let me know via PM and I'd be most grateful.

Secondly I have private healthcare at work and would be happy to pay the excess to speak with them, but my NHS endocrinologist says that won't make a difference and i still won't be able to get any help?! Has anyone gone private regarding their thyroid issues? Has it helped in any way and do they take things more seriously?

Thanks in advance 😊

[shaws Administrator]

I feel really sorry for you as levothyroxine did not suit me one bit and we're told that is all that is available.

I could not visualise a life of such misery considering I wasn't diagnosed until my TSH was 100 and then not by any medical person but a First Aider. I was far worse on Levo. Oh I had plenty of other 'diagnoses' but not a correct one.

The gjuidelines from the BTA are so rigid now that they don't give a damn at all if the patient is well or not on levothyroxine and it must have cost more money by me going (often) by ambulance to A&E/cardiology than a year's supply of T3. I don't expect a heart surgeon to have heart problems but it would be good if the BTA had some Endos who suffered with hypo and levo didn't work for them.

The problem has arisen as the cost to the NHS of T3 has risen about ten fold and a month's supply about £300+ so we can see the sense of not prescribing this licenced T3. However there are other T3s which can be prescribed on a 'named-patient' basis but I haven't a clue how much they cost at present but few doctors are willing as they'd have to bear the consequences if patient had some ill-effect..

Most of our members add some T3 to T4 (levothyroxin) or T3 only have sourced their own and if you put up a new post ask for a Private Message to be sent to you as it is forbidden on the open forum to name sources.

The Guidelines have stated that a Endo can prescribe on 'clinical need' but if yours wont, there's nothing you can do.

thyroiduk.org.uk/tuk/about_...

email [e-mail] for a list of Private Endos and if you choose one you can put up the name on a new post and ask for a Private Message to be sent to you as no info is put on the open forum. The post will then be closed and only private message to you will be sent.

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I believe that "private" doctors work under the very same rules as NHS doctors; many of them operate in both worlds. Personally, for my own thyroid problems, I wouldn't trust a single one of them to give me any proper advice or appropriate medication.

The fact that you inflicted RAI on your body to solve your hyperthyroid situation has, undoubtedly, given you irreversible hypothyroidism. Your doctor/endo is under an obligation from the GMC to have told you this before the treatment took place:

“CONSENT: PATIENTS AND DOCTORS MAKING DECISIONS TOGETHER."

“COMMON LAW. RISK. Patients should be told of any possible significant adverse outcomes of a proposed treatment.”

Without a functioning thyroid you are unlikely, as you already seem to have found out for yourself, ever to feel well again for the rest of your life. Things will never get better, irrespective of the dosage you take of levothyroxine.

The NHS seems on the road to banning T3 altogether for any additional patients; as an existing patient you are entitled to continue according to the recommendations from the BTA, do not be harassed into having it removed from your prescription.

You may do better still if you sourced your own NDT (porcine) from Thailand as this contains far more hormones that the body needs to operate properly. The thyroid gland would have no reason to produce these extra hormones if the body did not need them.

The ultimate solution would be a thyroid gland transplant. I wonder whether that will ever be possible.