Season's greetings, everyone. I hope you're all well, and thank you so much for the responses and support I received on my last post.
I've been doing a lot of thinking lately, and while I'm not necessarily intending to throw my hands up and go straight onto self-medicating with T3 just yet (though it is very tempting), most of the options I've given myself seem to involve T3 in some way. So, I guess I'd basically like to know what I might be getting myself into. For example, what are the legalities of self-sourcing T3 into the UK without a prescription? Can I still have a thyroid storm if my T3 gets too high, even without a thyroid? Could T3 damage my health in the long-term if my levels get too high? Could the increase in T3 in my system trigger my TED to return?
(also, completely off topic, but I can't help but feel like people can sometimes be a bit...antagonizing when it comes to people with thyroid disease, or perhaps just chronic illness in general? Maybe there's something about the physical characteristics of thyroid disease that people must find unusual or something...?It bothers me how freely others (sometimes even my past endos and other endos I've seen online) make unkind comments about the weight loss/gain, the ('scary??') bulging eyes etc...just last week I watched a youtube video with an endocrinologist who went so far as to call the eyelid fat accumulation in TED 'hotdog eyes'!! As if somehow having a thyroid condition suddenly means we don't have feelings 🙄 Sorry, rant over!!)
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lau99
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first, yes it is legal to import T3 meds into the UK for your own use [helvella has given the exact legal position here to other posters in the past];
second, from what I've read, I wouldn't recommend having over-range free T3 long-term.
If you are concerned about the potential for eg osteoporosis if you over-medicate, you could always see if you can get a dexa bone scan before you start - so you have a benchmark to compare to later
Thank you This is definitely comforting to know. I definitely don't intend for my T3 to go over-range on purpose, but I just wanted to know what might happen in the worst case scenario, just in case. x
I’d say you are very unlikely to get a DEXA scan done on the NHS but you could try this - osteoscanuk.com.
I had one done a few months after I had a DEXA done (I had Graves‘ disease, no one told me to look out for osteoporosis) then found I had osteoporosis so I agree you don’t want to overmedicate. The results for the osteoscan were in a similar range to my DEXA results. The big thing is that repeat osteoscan S don’t have to be done on the same machine like you really should have for a DEXA and they don’t need to be carried out by the same operator plus you can have them done whenever you like.
I had a dexa done on the NHS just before I got prescribed NHS lio - so it's certainly possible ... if you don't ask you'll never know but always useful to have alternatives
You’re right, you won’t know unless you ask. So it’s worth asking although with the state of things at the moment lau99 might have a bit of a wait. Sadly I had to break an arm before mine was done. Follow up scan not due for five years.
Hello buddy, I can’t answer your questions but thought I’d pop along and say hi 👋🏻
I can relate to the eye situation you find yourself in. My eye bags are dreadful since I got sick. About a year later I had a corneal ulcer and decided to bin off the contacts and wear glasses. While I used to be really slim and vain, and would never have worn glasses, now I’m fat and look crap and need the glasses to hide my eyes otherwise people say gosh you look tired.
You are not alone. I really, really hope that you regain health soon so that you can get back to living your best life. It’s rubbish that you’re so young going through this. I hope you have lots of family and friends that support you. X
Hi cazmania7 That's really kind of you, thank you for such a lovely response. Having this forum with such supportive people who know what it's like is definitely a soft place to fall when it becomes difficult to cope. I'm sure you look fine the way you are! People can really be so insensitive at times
Not at all!! Though, I must admit I feel the same way a lot of the time...as if it wasn't enough to deal with the other issues, now my self esteem has plummeted as well Thyroid disease really leaves no stone unturned! So sorry to hear that it didn't work for you...I hope we both start to feel better soon xx
Can I still have a thyroid storm if my T3 gets too high, even without a thyroid?
Depends what you mean by 'thyroid storm'. Obviously, if you take to much, you're going to have a high level in the blood. But, do your really think you're going to take that much T3? I don't know how high the level of the FT3 has to get before it constitutes a 'thyroid storm', but if you're titrating up slowly and doing labs, are you really going to let it get that high?
Could T3 damage my health in the long-term if my levels get too high?
How high is too high? But, yes, I suppose it could. But with responsible dosing, that shouldn't be a problem. But, remember that a blood test tells you just that: how much is in the blood. It doesn't do anything in in the blood. It has to get into the cells. So, a blood test isn't always a good guide to how much is getting into the cells. And, some people need high levels in the blood to get enough into the cells. So, to some extent, you also have to go by symptoms.
I can't help but feel like people can sometimes be a bit...antagonizing when it comes to people with thyroid disease, or perhaps just chronic illness in general?
Yes, you're right, they do. I don't know about other chronic illnesses, but you also find the same attitudes towards people who are over-weight, like being over-weight dulls your feelings, and gives them full licence to be rude! As if having a thyroid problem/being over-weight, means you're no-longer human, and no-longer have the right to dignity. I find this attitude is prevelnt in the medical community. And, I've thought about it a lot. And, I've come to the conclusion that it's common or garden fear. If this can happen to you, through no fault of your own, could it also happen to them? So, they have to pretend that it's your fault, that you did something to deserve it, something they would never do, so they are in no danger of it happening to them! I don't think they are concious of these fears, though, it all goes on subconciously. I once challenged a doctor about his out-rageous remarks, and he seemed genuinely surprised. What remarks? Why was that rude? You misunderstood, I didn't mean anything by it. I think it's time we all started giving them a gentle prod, like 'hey, that was rude! What gives you the right to be rude to me?' And, if that doesn't work, perhaps a hefty kick up the bum would do it.
Thank you for such an in-depth and knowledgable response to my questions, greygoose. I think you're definitely onto something with your insight about people treating thyroid patients poorly!! I definitely think it's high time I stop being such a doormat regarding unkind comments.
Can I still have a thyroid storm if my T3 gets too high, even without a thyroid?
A thyroid storm occurs when you have too much T3 - but the figures you see from blood tests are usually very, very high.
Unless you managed to take far too much every day for some time, I don't think there is the remotest possibility of reaching that sort of level of T3. And if you did, you would just stop taking it - at least for a while. The word "storm" is used because those who suffer it have no control over their T3 - their thyroid is releasing too much, they become more and more hyperthyroid and they have no way of stopping that. Very often, they have delayed seeking treatment (for many reasons - this is not intended to blame the patient) and by the time they do, they are in a dangerous place.
The problem with importing T3 for yourself is not legality!
First, finding a trustworthy supplier.
Second, delivery - with delays at ports, air transport disrupted (currently almost stopped), delays on motorways, likely delays being customs cleared, probable delays actually getting delivered. The combination of a still-uncertain brexit and Covid-19 are not making it easy.
Third, there will be no low value consignment relief in the New Year (£15 at present) so all imports will be liable to VAT at 20% (on cost of goods and postage) plus a customs clearance fee.
Thank you for answering my question, helvella. I agree that obtaining T3 is looking to be an increasingly difficult task, so I will continue to come back here to see how others are doing in that department.
Good morning, where ever you find yourself this Christmas week !
I had RAI ablation in 2005 and was fine on Levothyroxine for about 7/8 years and then it felt as though my body stopped working. After a couple of years of going around in circles and making no progress through the medical mainstream and being refused both NDT and T3 by my doctor / CCG / and uncle Tom Cobley ???
I decided to self medicate in 2018 - I didn't want to do this, I don't think anybody does, but had no option.
I had by this time read extensively and felt I had nothing to loose - I was very unwell.
Over the previous couple of years after following posts on here, I was supplementing ferritin, folate, B12 and vitamin D and after reading Dr P's book added adrenal glandular - and within a couple of months I found my very very shaky back a little more stable and able to stand straight, unaided for more than 10 minutes - progress !!
I purchased both T3 and NDT as I thought - why not :
My first experiment was to increase Levothyroxine - I couldn't get past 150 mcg daily - it made me more unwell :
The T3 worked from the first dose just 6.25 mcg added to 100 T4 and I woke up without a mashed potato for a brain. I felt amazing and cried my eyes out, with relief, as this was so easy :
I felt a little turbo charged throughout the morning and found my energy nonexistent in the afternoon I did this for about a month and then I increased this dose to 12.50 and felt very strange - terrible head - couldn't drive - couldn't function - obviously stopped the T3 and put myself back on the T4 :
Regrouped - rethought and started NDT :
Same immediate relief of hypothyroidism symptoms :
Slowly increased monitoring blood pressure and temperature :
One week I felt a little odd so dropped back down to the previous weeks dose and have stayed there for what now is coming up to 2 years:
I am now on 1 + 1/2 grains which equates to 57 T4 + 13.50 T3 :
If NDT becomes unavailable I will go back to a T3/T4 combo and guess I might end up with synthetic T3 at around 12.50 mcg with a T4 at around 50 mcg - I don't know, but it's a start.
You may over dose - this is not a thyroid storm - and you simply stop what you are doing and regroup and rethink the situation.
You can't legislate for stupid insensitive people - I know it hurts - and when you are not optimally medicated your resilience is at an all time low and the hurt hurts so much more.
I walked around behind big designer sunglasses for a couple of years - but then realised I was also hiding " me " and I am worth more than this - there are psychological and emotional issues, that's a fact, but at the end of day we are all worth more than the sum of our parts, and we will grow through stronger, wiser and better because of these challenges faced.
P.S. I need to add that all this happened to me after I had officially retired and aged about 66/67 - I had to stop volunteering and " playing taxi " for my nieces but in the overall scheme of things I was with no outside commitments.
You are living away from home, holding down a university place, have exams and no doubt that package can be a bit daunting - I think you are absolutely amazing and you will find a way through this thyroid madness.
Thank you for your insight and response, Penny. I often find with your posts that I'm lost for words on how to respond - you're always so knowledgable and compassionate. Luckily(?) I managed to make it back to London just before we went into Tier 4. I hope you're having a lovely holiday season and staying safe Even though people and this illness can be very unkind, I hope I can find a way to get through this thyroid stuff in one piece!!
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I hope you're all well, and thank you so much for the responses and support I received on my last post.
I need a doctor to prescribe T3 for me - Can you recommend one?
Graves thyroid eye disease (TED) post-thyroidectomy?
Hashimoto's ords or auto immune thyroiditis 
Unusual case...any ideas?
