Thought I should update my T3 Only Blogs. Last time in March I said I was going very well on T3 Only in divided doses using Paul Robinson's CT3M.
I have had no ill effects at all taking T3 other than a feeling of not having enough.
I now take 49.95mcgs daily split into three. Just as I had got it all working fine BST mucks everything up. Couldn't quite believe how it can change things so much. Now having to rearrange my times! Not got it right yet, but I guess it'll take a few days to adjust.
Three weeks ago I had been on more T3, it was too much. Decided that having tried 2.5mcgs more each at CT3M dose and evening dose and found that it was too much to take in one go I was about to introduce a Dose 4 but this will now have to wait.
Spanner in the works so now not too sure what to do but guess I have to comply for now.
Last month my new GP finally offered to refer me to an Endo, (previous GP refused saying I didn't need one).
New Endo, quite nice but damming of previous help I'd sought to get well outside my GP's useless offerings and although could not dispute that I had improved on T3 only and agreed that I needed it insists that I now take T4 alongside it for two months! probably to cover his neck!
Anyone else had this problem?
Having been on T3 only for 4 months now with no ill effects, its a bit frustrating after all the hard work getting T3 dosing right and hopefully chasing away the RT3 I had had on T4 and NT.
But, I am grateful to be given a chance to get T3 on prescription and more importantly to have it now written in my medical records just in case I get run over by a Skate Border!
I'm not too sure how I should introduce it given that I'm still doing the CT3M method which hopefully is improving my Adrenals.
Anyone been in this position and knows what to do?
Endo dismissed adrenals and CT3M. "Unnecessary tinkering"!
One step forward another back and then hopefully forward again.
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Jacksatlast
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Personally, I would continue to carry on using T3 only. I almost died on T4 and wouldn't touch it with a barge pole. If you are feeling better and have worked so hard to get to where you are then don't mess it up just to please him.
You could always tell him that you 'tried' to take it but your symptoms got so bad you had to stop and revert back to T3 only. He also needn't give you T4 to cover his back as T3 is on the BNF and he is allowed to prescribe 60mcg p/d although others do prescribe more.
Another thing is that no matter how much T4 you take with your T3, your fT4 AND TSH will ALWAYS be suppressed so I don't know how he would know if you were taking T4 or not.
I agree with SilkyJ, do not take T4 just to please him. We always feel we ought to be on our knees and be 'grateful' for being prescribed what we 'need', however he is only doing his job, yes I know that many others will not prescribe T3 but just because this endo does, it does not mean you 'have to' take T4 for him be grateful 'yes' however do not play with your health just to please him
Love your post. I must admit I did think why should I take T4 after all the hard work but didn't want to push him too hard. I think I was still in shock, I didn't even have to ask for T3 he'd already decided before I'd arrived having read my notes sent to him in advance.
Thought once I'd get the T3 on prescription established I'd then question it.
He did seem very relaxed about how much T3 and T4 and rather left it up to me! Said to take as and when I feel it's needed so I don't really know how much of each he's going to ask my GP to prescribe. He thought my current T3 daily dose of 50 mcgs approx was very low but did say it suits some and I'm pretty small!
Really interested to see now what my GP has to say.
i have been referred to an endo after begging my doctor, and i want to prepare so i can explain and try to get his help, i have been on levo alone for 2 years now, i would be so grateful for any advice you could give me, ny doctor says he is bound by NHS to only prescribe levo, and believes thsts all he needs to do, i was wondering how you got T3 prescribed if you dont mind me asking, i would be so grateful for any help and advice, it feels ( and is probably true ) that if this endo appointment is my last and only chance ,
I did actually start on T3 by myself following advice from a private GP, he suggested I record everything, BP, Pulse and temps alongside symptoms on a daily basis for a few months until I could clearly prove that I was getting rid of my a hypo symptoms and felt better.
I recorded each dose change and times taken.
Prior to this I had a full Thyroid blood test done including Reverse T3 which was high and Antibodies.
The Endo couldn't really disagree with my notes so had already decided to prescribe T3 I think before I saw him.
You could ask him for a trial just to see if it would help, it's worth a try.
thanks so much for your reply, i was wondering how to access the T3? i am going to have the private test for T3 etc to take , but no idea how to access a private GP or the costs etc, i am so desperate and its knowing my endo wont do much more than my GP, (his words) it all seems so hopeless, , i am really pleased for you as its nice to know it can be done, x
I agree with SilkyJ that you should stick with T3 for now. Can you get a saliva cortisol test? That would be a good idea too. You could then approach your endo and tell him that, as your cortisol levels aren't yet optimal, you are continuing with T3 only. Once you achieve good cortisol levels (high when they should be high, low when they should be low) you will be happy to add T4; very ,very slowly and carefully. If you have the cortisol tests to back it up, you should hopefully be fine.
I read that it can take 6 months or more to recover enough to add T4. I think a saliva cortisol test is a good idea before adding T4 anyway. The last thing you want is a buildup of reverse T4 again because you are not converting properly.
It's great news that your endo will prescribe T3. Perhaps explaining about adrenals, and showing him your cortisol tests, might convince him to allow you to stay on T3 only for now even if he doesn't agree with adrenal fatigue. He might want to state in your notes that he would prefer you to be on some T4, but I suppose he has to cover his back if he is to continue to prescribe T3.
No, but this doctor seems like he might be a bit more open minded and it may well be worth a try. Regardless of whether the doctor pays any attention to it, it is a valuable tool for finding out whether you still need T3 only or not and assessing whether adrenals are recovering. If cortisol levels are not good, T3 is probably the way to go as T4 is more likely to be converted to reverse T3.
There are plenty of private doctors who recommend this test. Unfortunately the NHS, as a general rule, don't seem to agree. This doesn't apply to all NHS doctors though.
I understand what you are saying, and have to agree with you, but it has to be worth a try. If we don't even try these things, the way thyroid patients are treated will never change. And who knows, perhaps this doctor is more open to suggestions or perhaps it is time to put away my rose-tinted specs
I should clarify that I haven't talked to my GP about the saliva cortisol test. I may do that next time I see him. Perhaps if I go backed up with research papers...
In the results section of this paper it clearly states that
"Salivary cortisol is a sound analytical method for evaluating free serum cortisol due to its classification accuracy, good imprecision, linearity, and stability. AUC(ROC) comparison between MSVC and MSC shows no significant differences. The substitution of the MSC for MSVC in our hospital could save between €16,762 and €132,804 in one year.
If you do a search on pubmed you will see many research papers that use saliva cortisol testing to determine cortisol response to various stressors. Clearly it is a valid and reliable way of evaluating serum cortisol levels at a fraction of the price and inconvenience otherwise these scientists wouldn't be using it.
If I find anything more useful, I will let you know
I think many of us on here who have been prescribed T3 on the NHS were prescribed it because we were already self medicating and self advocating. It pays to take your health into your own hands when it comes to the thyroid.
I was self medicating on 150mcg T3 and was prescribed 100mcg T3 by my endo. This was not my first endo. 100mcg T3 was not enough for me so I emailed him explaining how sick I was and he increased it. I then increased it further myself so that I was back on my original dose. I won't go into the details of my case but that sudden decrease of a whole 50mcg T3 did something to my system whereby I could not get back that sense of wellbeing I'd had on it before.
This is why I would never advise someone to change their dose to please a doctor when they are already doing better as I know what damage this HUGE decrease in T3 caused me.
Your best bet would be to read up as much as possible and then take the plunge with either NDT, T4/T3 or T3 only. I don't know anything about you so can't advise. I do know that there are no endos on the NHS that I would trust with my health. My current endo is lovely but his hands are tied by the BTA/ACB/RCP thyroid guidelines/policy statement and is afraid of being reported to the GMC by his colleagues. It is for this reason, I will not push him too far because I know his livelihood is at risk.
thanks so much for your help silky, i have got as much info as possible, via this site and books such as Dr. Tofts etc, which i was going to take to the endo i will see but my GP has warned he will have to work within NHS guidlines, ( as he himself is) i have been wanting to try T3/NDT/ , and would if i knew how to access it, i am thinking i will pay for a private blood test to get full range tested and then take results to endo? I have info for blue horizons for that but no idea how to access a private Dr or anything, can you point me in any direction thankyou again, x
I will send you this info, I will add here though that I ended up paying privately to see him as my Private health care plan refused to pay and my GP said I would get more time to explain my case. I still had to wait 6 weeks!
Most revealing, he said that if I hadn't seen him privately he may not have been able to prescribe T3 as our local trust has written to all HC Professionals saying not to, didn't say why but added that it's very expensive and that I am very lucky! Makes you gasp with frustration.
Thank you Silky and Carolyn for your advice.
I am still juggling T3 since BST so will not take any T4 yet and may do what Paul suggests to go along with it later and if it proves the wrong protocol to add in I will finally be free to stay on T3 Only.
Sadly I did show him my Genova Saliva tests and he just dismissed them as inaccurate and said that he'd look into my Adrenals in two months if I still feel they are not working well!
Tricky one. I will get another Saliva test done anyway as I need to know.
Having dropped my T3 by just 3.15 mcgs on two doses three weeks ago as I felt hot n sweaty I now need it again as I'm still hot n sweaty and feel mussy headed. If I react to that small a change I think adding T4 will show up pretty quick.
I'm currently taking Cymonel 25 mcgs tablets. I gather the UK 20 mcgs are weaker can anyone advice an equivalent dose?
Hi Jacks - how the heck do you accurately measure your T3 dose down to as little as 3.15 mcgs. I take 25 mcgs of Cytomel and tried splitting a tablet to take a 12.5mcg increase but the stuff went everywhere! After a week of trying the extra 12.5 mcg in the afternoon, I felt sweaty and hot on and off and didn't sleep very well. Have gone back to 25 mcg for a while - how do some people take 150mcg of T3, my head would blow off!
Splitting is such fun! Not. I use a craft knife which is really thin.
I use a pill splitter to get my 12.5 mcgs then divide that into two and then make as near as I can a 3.1 mcg slice. I usually discard the other half of the 6.25 as its impossible to divide equal.
Like you I have no idea how anyone can take large doses. I react to as little as 3.1 changes
Tip, store the T3 in the fridge then take out to split a weeks worth, cuts better cold!
That is really interesting to know! I will have to remember this in case anyone else asks about splitting T3.
I imagine a scalpel would work as well as a craft knife if that is something people have access to. I know some people use razor blades but it must be easier using something with a handle. When I was a research physicist, we used scalpel blades for all sorts of things because they were so thin and sharp.
Well done you!! As T3 is working why change? You know your body best, don't be persuaded otherwise.
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be grateful 'yes' however do not play with your health just to please him 
Finally been prescribed T3!!!
Getting GP to prescribe T3 
GP No Longer Prescribing T3
GP won’t prescribe t3 
