I've been hypothyroid following treatment for Graves for over 20 years. Prior to thyroid, I had a pituitary adenoma as a teenager, which was successfully treated with surgery plus radiotherapy. It was routine follow-up for that that revealed the thyroid issue. When I was first diagnosed with Graves, I fought tooth and nail to get T3 and eventually won. I lost a couple of stone and regained confidence.
As you'd expect, over the decades I've seen many consultants. Most recently, about 18 months ago, I was passed on to a new lady. She's very pleasant etc but she seemed horrified that I took T3 and she wasn't happy with my bloods,though I felt fine. Town please her I've weaned myself off it. I've felt grotty for some time now,returning to insidious weight gain and fatigue, along with cold extremities and very low BP (94\47 on last visit to her 12 days ago). We at first put this down to recovering from a subarachnoid haemorrhage in March last year. This hasn't had any outward effects - apart from the fatigue...I had bloods done 12 days ago;she thought I might need more T4, but no results yet.
Does anyone else agree that I should go back to T3? With 40 years of endocrine problems and degree in biology, am I likely to know my own body, and bu**er what the test numbers say? If it makes me slightly hyper, I'm prepared to accept a shorter but happy life against unlimited time as miserable and lacking in positive attitude as I am now! (Just as an aside, the only other endocrine supplement I have is somatropin - growth hormone- injection, every day) I do have other health issues but the T3 question is overshadowing everything at the moment. Thank goodness I have an unbelievably supportive family.
Your opinion would be hugely helpful. Sorry about the long post.
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mumcat2
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Do you mean you were on T3 only and feeling fine when your endo changed you to Levo or are you now on the combo T4/3, with just a small amount of T 3? Anyway, whatever you were on and doing fine, I would agree with you to ignore your endo and go back to it. Do you have copies of the blood test, from which she changed your meds? Was your T3 very suppressed, because this is usually what they fear to condone and then feel compelled to interfere. You know your body. Stick with T3. I love it too!
As to blood test numbers, the only time I've been given hard copy of my results was with my last endo. I've never met and been friendly with another endo patient in the UK so perhaps wrongly assumed that no hard copy and must a token glance at
BT results was the norm; the only people I've met online who gave their numbers were in the USA and I was the only unenlightened Brit!
When I felt "well" I was on 100mcg levoT4 and a separate 20mcg lio T3. I've decided that I'm to go to 10mcg T3 for a few days before upping it to the 20 as before, and hope that given a few weeks I'll pick myself to being the person I like. In that time I also hope to hear from my endo about my recent thyroid bloods as well the short synacthen she asked for on seeing my worryingly low BP. I had told her during our consultation that it had been low;I don't habitually check it, but my husband has been having blood pressure treatment and we got carried away by the novelty of our very own sphygmomanometer (!)and I wanted a go. Three goes later we were not happy that they averaged out at less than 100 over 50 and that it would be worth mentioning at my next appointment. As she'd basically not reacted,I'd virtually dismissed it as an issue. I don't pass on info I don't think is relevant, but then again,she doesn't know me well enough yet and she's a relatively young lass.
You can request copies of your medical records and results. £50 for full manual and electronic. £10 for summary of electronic records. That'll be per GP surgery and per hospital.
I absolutely believe that you have every right to make the decisions yourself.
The only moral/legal basis for the control of medicines seems to be the damage inappropriate use can cause. However you appear to have understanding, and experience of a regime which was much more successful than your current treatment. You have expressed clearly your preference for short and happy (though I doubt whether better treatment would actually shorten a life).
In my book, any doctor should abide by your wishes after taking suitable steps to reassure themselves that you understand as well as you appear to.
Translating that into the real world, with real doctors, real funding issues, and so on, can tend to sap the morality that obviously exists, and might make your oath difficult, but in my view you have won the argument.
I fully support your decision to self-medicate your way back to the good health you enjoyed prior to pleasing a young endo who a) doesn't understand that T3 suppresses TSH; b) has probably been indoctrinated through med school by big pharma promoting the poisonous Levothyroxine; c) doesn't comprehend the sheer f***king misery of chronic ill health, especially when it is possible to mitigate the effects, if not cure them.
Complying with my endos' T4 monotherapy has cost me almost 2 years of health. Taking my meds into my own hands over the past few months is paying dividends.
Thank you to everyone who has taken the time and effort to reply. It's reassured me that I'm on the right track going back to my old regime, so I've started today.
Just a couple of replies to your comments. I have talked about this recently to my own GP. She's happy that I know myself well enough to make that decision and as she "joint cares" for me with the consultant, that helps as she will prescribe T3 for me.
I've taken great advantage of my right to access my records - following last years sub'arachnoid, I not only have the written notes but also copies of all MRIs I had. I find them fascinating,especially using the software they sent. I'm possibly the only person here with their own MRI-ed head on their Facebook page! If you're interested, it's not secret or private, I'm Denise Milward and you're welcome to have a look!
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