What should I expect when I own up to self meds?

I have an appointment tomorrow at the new surgery I've just joined. The gp has asked me to come in due to the results of my annual bloods. tsh 0.01 (0.27-4.2) and free t4 11.5 (11-22).

I feel great for the 1st time in 2 yrs. I started self meds on thyroid -S 5 months ago after being ignored and told I was fine.

It's probably time to confess to the self meds and I'm expecting a lecture on being over medictated but can someone give some advice on a balanced informed reply please. If anyone knows of a clever link I can attempt to memorise some facts from that would be great.

Surely I'm in just as much danger from being under medicated and unable to function? Drs don't seem to care how you feel as long as the test are 'normal'!

9 Replies

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  • GottheTshirt, A lot of doctors don't know what NDT or dessicated thyroid is but they may have heard of Armour, NatureThroid, Westhroid or Erfa. Some think it is dangerous, unstable and unregulated but although they aren't licensed in the UK or listed in the BNF the first three are listed in the USP-NF and Erfa is listed in Canada. They are all prescribed in the UK on a 'named patient basis' but doctors aren't obliged to prescribe it.

    I told my endo in Feb that I had been self medicating T3 in addition to the T4 I was prescribed. My health was considerably improved in the 3 months prior to seeing him and he wasn't keen on me buying on the internet so he agreed to prescribe.

    The very worst that can happen is your GP refuses to treat you if you continue to self medicate.

    There is a good explanation why TSH is suppressed by T3 in NDT in this link tiredthyroid.com/tsh.html

    This new research explains why TSH, FT4 and FT3 are individual to patients and why lab ref ranges aren't good guides to hypothyroidism thyroiduk.org.uk/tuk/TUK_PD...

    This link lists T3 and NDT prescriptions issued in England healthunlocked.com/thyroidu...

    This link contains letters from MHRA re prescribing unlicensed medications tpauk.com/forum/content.php...

  • Thanks Clutter, this is just the information I need. I'm back to being stubborn and bloody minded now I'm feeling better so she can say what she likes I'm not going back to t4 only.

  • GottheTShirt, GP may not be fussed and may agree to continue monitoring you.

  • That's what I'm hoping for. :-)

  • Thanks again. The spreadsheet is brilliant as it actually lists my practice as prescribing t3. Maybe I have a hope of at least being monitored on my own meds. Will update the forum tomorrow. Fingers crossed.

  • GTTS, Helvella did the spreadsheet, I only bookmarked it.

    Good luck tomorrow.

  • I was terrified of telling my new GP I had been self-medicating for years. My previous GP knew, but had not put it in my notes for fear of being attacked by the medical mafia, and I didn't blame her. I simply told the new GP that I had been desperate, and that it worked for me, but I preferred to work with my doctor than against her/him.

    It was accepted fine with the GP I saw, but causes problems every time I talk to a different GP in the practice. I have just got used to it, and won't any longer allow them to bully me into trying without my NDT.

    My surgery recently had a 'self care week' when they were encouraging patients to take responsibility for their own health. That is what I have been doing for years now. I understand that it makes them jittery - my knowledge is way outside their limits, and its dangerous territory. The decent ones are supportive, and freely agree that the system stinks. The less brave tend to be nastier, but I remind myself that they are doing it from fear and ignorance.

    In the unlikely event that your new GP really kicks up ask for advice. Should you really go back to T4 only, and stop functioning? Or should you take a calculated risk with your health? My lot are always worried by by suppressed TSH, but then they also don't know what to do about my low FT4/FT3 - and have no real answers. We usually agree that its a compromise, I assure them I understand the risks and we part if not amicably, then at least not in a state of out and out war. Most GPs want their patients to feel well, you just have to reassure them that you understand what you are doing, and the risks you take.

  • The biggest fear doctors have of a suppressed TSH is that they have got the idea that a suppressed TSH causes heart problems and osteoporosis. This is partly true - people who have a supressed TSH without taking medication usually have Graves or something which causes these problems. However people who have a suppressed TSH because of medication for hypothyroidism don't expose themselves to a greater risk of heart disease or osteoporosis, although some people agree to get their heart and bones checked to put the doctor's mind at ease. The results always come back fine.

  • You have a choice, the NHS states that all patients should be treated with respect and you cannot be forced to take a particular medication. NEVER let any doctor tell you that numbers are more important than how you feel!!

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