After my pitiful NHS results in December ( before starting self sourced T3) my GP increased my Levo to 200mcg a day. I haven't been taking that much, obviously as I'm taking 150mcg of Levo and 12.5mgs of T3.
The GP I spoke to said retest February and unfortunately my surgery have been uncharacteristically efficient and want me to get thyroid bloods restested.
I did a private test 2 weeks ago, the first since introducing T3 and my results were good, but obviously TSH was suppressed. I'm not bothered as I know this happens on T3 but I'm pretty sure my GP will have a panic attack. Neither FT4 or FT3 were over range.
He doesnt know about my T3, I just wondered how other members on either T3 mono or combination therapy who have to deal with the NHS manage this. Do I tell him that Levo alone just wasnt cutting it or keep quiet?
And is it inevitable that being on T3 always leads to very low or suppressed TSH. I've also had it just on Levo. I dont think my feedback loop works 😧
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Sparklingsunshine
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Looking back at your previous results on 200mcg T4
Free T4 (fT4) 21.4 pmol/L (12 - 22) 94.0%
Free T3 (fT3) 5.2 pmol/L (3.1 - 6.8) 56.8%
T4:T3 Ratio 4.115
You had a chance at getting a referral to Endo to request a T3 trial, but I'm guessing you didn't fancy that route or it wasn't offered, so probably best just to bite your tongue and accept the reduction to 175mcg that will likely be the request.... so still banking 25mcg up until next review 😉 and carry on with your own trials 🤗
I've never been offered an Endo referral or anything to do with T3. Where I live they do offer it, it has quite high levels of prescribing but frankly the long waiting times to see an Endo and being at the mercy of doctors doling out meds based on outdated and deeply held beliefs about TSH didnt appeal 😩
As long as the NHS carry on prescribing Levo I can manage the T3 on my own. Thanks for the reply.
I didn't realize that you are supposed to ask for a referral we assume GP's flag up when they are out of their depth...not always! So when I did that it all went relatively well though like you say it could all go Pete Tong in the future 🙄
That's what I thought... bite your lip then 🤗blag a flare or covid 😬
I lost all respect for my local Endos when I was having adverse side effects like itching following an increase on Levo. My GP emailed them for advice and guidance and their reply " just stop taking it".
No suggestion about trying a different brand or even liquid Levo. They said my TSH wasnt that high at diagnosis, whilst ignoring my below range and plummeting FT4 levels. Doh!
Thankfully my GP ignored them and it later turned out it wasnt Levo related. And these numpties are in charge of our health 🤨
Yeah, it's not ideal, if you can afford to buy your own it is the easiest route but I really wanted to push through the NHS route as a matter of principal and so that it is on my records, also to try and educate them to our needs!
Driven by the fact I was so angry with the appalling treatment we get 🤬
I admire your fortitude lol. I've been battling with doctors for far too long, I have Fibro and PA as well as Hypo, all badly managed on the NHS and I've gone into bat over the years several times to get my issues under control.
I just couldnt be a*$#d over the T3. Fortunately Tiromel isnt expensive and this way I can control how much I take. I think there comes a time when you just want a quiet life.
I can be quite bolshie about my health in many ways but this wasnt a hill I was prepared to die on. But I'm very glad that people like you are prepared to make a stand 😁
I think the only answer is very carefully. Be cautious and think carefully about any information you want to share. Remember that doctors are just a tool in trying to take care of your health, not your boss.
It is quite easy to get into a sticky situation. I think the most hopeful situation to be in is one where the doctor doesn't pry too deeply, and it isn't necessary to tell them about self medicating.
The situation I am in is that it seems to be on my record that I am being medicated privately, and doctors just tend to assume I am regularly seeing a private doctor for monitoring, but I have never explicitly said that. So muttering "I'm having that prescribed privately", without sharing anything else can sometimes be an option. You could try feeling out your GP by saying something like "I've heard it is possible to have T3 prescribed privately. Would you have any advice about that?" and just see what they say. If they sound confused or ignorant about it, it could be a good sign they won't ask many questions later if you announce you have done it.
I originally told a consultant I was trying NDT after I'd been on it about 6 months and was sure I felt much better and would be self medicating long term. Much later I found out she prescribed NDT to her own private patients, so at least knew a bit about it. Needless to say she never mentioned that to me when I was struggling. It was a huge decision, and I only really did it because I was very desperate. If you are on an even keel, or if you need the doctor on side to treat other conditions, I would be more cautious.
Another thing that strikes me about your situation is that in the long term you could be open to buying your own Levothyroxine, too. Or changing to T3-only. So you don't need to be completely dependent on the doctor's good will to keep prescribing. I would definitely keep it going as long as you can, but just keep in your back pocket that you have alternatives, so their decisions are not life or death for you.
This means you do have the option to play along with whatever they want to do, allowing them to reduce your Levo if they want to, and supplement with additional T3 if you need it to feel well. They will then never reach a point where they like the TSH situation. But maybe eventually will accept that your TSH will never bounce up.
Many people just always have a suppressed TSH. It's almost impossible to feel well with the TSH within the range, so there is no full solution to the situation your doctor has created.
I think many members are in the situation where doctors don't do blood tests at all. Or maybe they refuse to turn up when called for tests, and eventually the doctor stops calling them. It is your right to refuse tests you don't want, as any interventions should only be done with your full consent.
An experience I have had, as I used to be much more sick, is to realise I broke all kinds of rules, and didn't do correct admin, while I was very ill. For example had lost loads of medicine and ordered additional prescriptions, not turned up for blood tests or followed up on appointments. Many things I would never dream of doing now I am more well. But I never got called out or had any consequences for these things. I only even found out about them when I found unused blood forms or other evidence later. So it might be possible to put things like this down to absent mindedness.
Sorry, this message has been a bit stream of consciousness. I hope there are a few bits in here you can use!
Thanks so much for the reply. I'm fortunate I have loads of Levo. I spent several months on NDT only, so built up a supply. I didnt stop getting Levo as I didnt know if I'd have to go back on it, which I have.
I liked NDT but I'm concerned about ongoing cost, using websites outside of the UK, there are a lot of pitfalls, unless you have a tried and trusted source. I used Thyroid S so need to import it. Levo plus T3 seemed a cheaper option.
I've often put off having blood tests but never refused one. I'm probably concerned that if I do they are quite within their rights to refuse to issue anymore Levo, plus as you say I do need my B12 injections so dont want to rock the boat.
I might very well mention I'm getting my T3 privately. I do get my Low Dose Naltrexone privately but my GP doesnt know about that either lol. Probably a half truth is better than an outright lie 😄
It is so depressing we can be held to ransom by doctors. And the more other conditions we have, the more we get locked in.
Just to make sure you know, it is possible to source and do your own B12 injections, too, if you need to. Many members do it, and the biggest reason to do so is to have more frequent injections. So in the big scheme of things you could have other options if you need to slip right off their radar.
I managed to beat them down from 3 months to 2 for the jabs. I use sublingual drops in between. I looked at self injecting on the PA forum, but it seemed even more of a faff than self sourcing thyroid meds 😒.
Its so wrong that we have to be furtive or even downright underhanded just to have a quality of life. Plus it lets the NHS off the hook, which goes against the grain.
Its forcing those who can afford it to go private or import medications, and those who cant or wont, are struggling with ever increasing rationing and poor service. Makes you wonder what our taxes are used for.
I personally wouldn’t say anything because he will greatly reduce your T4 meds if he knows about the T3 and although your not taking the full 200mcg he probably will reduce that even if you say nothing about T3 …. So might be a win win until the next time.
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