I started taking T3 as prescribed by a private consultant, increasing over a week to three times a day on 24th September. As I felt I had many of the symptoms of low cortisol I also did the saliva test which surprisingly came back normal but good news. I took a finger prick blood test last week as I have a follow up appointment with the consultant next week. Can anyone advise or suggest any questions I need to ask please? I expected the low tsh due to taking T3.
I initially felt better, less tired and anxious but this last week I have felt unwell again. I had ectopic heartbeats prior to taking T3 but all investigations over years came back as yes ectopic heartbeats but there's nothing to worry about. They have been much worse last few days and driving me mad. This happened about 3 weeks ago too, I emailed consultant and he suggested drop back to 2 x day. I didn't as I thought it was anxiety, my friends funeral and it did settle after a few days.
With monitor my health
TSH 0.09 (0.27-4.2) low
Thyroxin 10.3 (12-22) low
Triothyronine 4.9 (3.1-6.8) normal.
Cortisol with Regenerus
Am 22 optimal (14-25)
Noon 8.1 optimal (5-10)
Evening 4.2 optimal (2-5)
Night 1.2 optimal (1-4)
DHEA 115 (106-300)
Many thanks for reading this far it is very much appreciated.
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Baggiesfan
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When did you take your last dose of Levo and T3 before the test? Last dose of Levo should be 24 hours before and last dose of T3 should be 8-12 hours, splitting dose the day before and adjusting time if necessary.
Did you start taking a B Complex as advised recently? If so did you leave it off for 3-7 days before the test?
Did you reduce your dose of Levo when starting T3?
Thank you for replying, I was over the 24 hours for levothyroxine and over 10 for the T3 prior to the blood test as advised. I didn't start a B complex sorry as I hoped things would improve without, so no problem there. Yes I reduced my levo as the consultant advised, from 100mcg to 75mcg and on the 2 days I took 75mcg, I reduced it to 50mcg.
I don't think you should have reduced your Levo at all, which was mentioned in reply to your previous post, and I agree with the members who also suggested that with your FT4 only 34% through it's range at that time then Levo should have been increased first before considering T3. Not only that I think you should also have optimised your low B12 and also improved your Folate level.
By reducing your Levo your FT4 is now below range and I imagine you don't feel particularly good. I think your Levo should be increased and get it back into range, you may need it at least at the level it was before, maybe even higher.
I started taking T3 as prescribed by a private consultant, increasing over a week to three times a day on 24th September
Are you saying that in one week you started on 5mcg and ended up on 15mcg? If so that is too fast. T3 should be started at 5mcg daily for 2 weeks, if all OK then add a second 5mcg, after another 2 weeks if all OK and if necessary add a third 5mcg. You're recent ectopics could be down to going too fast with the T3.
Thank you, I know it was mentioned that I should have increased my Levo first but I was following the consultants advice. I expected to be advised correctly when he is said to have a special interest in thyroid conditions. He wanted me to start on 5mcg T3 3x day straight off which is why I did start a little slower as I was concerned it was too fast.I'll ask or should I say challenge him next Thursday re the Levo and T3. You're right I do feel sorry for myself, not sleeping well, anxiety, ectopics, all was so much better after starting T3 a couple of weeks in. What do you suggest I ask him please?
I would read through the replies to your previous posts and make notes of what members have suggested, all those comments have come experienced patients who have been through what you are going through and they have given suggestions based on their own experiences, what hasn't worked and what has.
I don't think your endo has a clue so whatever you say will be challenging him and he won't like it. I can't tell you what to say that will go down well with him.
I think you should point out what has happened to your FT4 level and how you feel, and that you would like to get your FT4 back into range by increasing your Levo, leaving your dose of T3 as it is for the moment. You are going to have to gradually tweak doses, one hormone at a time, to see where you feel best.
My experience of an endo made me very ill and it took me 3 appointments with him to realise that there was no point in seeing him any more and allowing him to bully me and keep me ill. I eventually, years later, took things into my own hands but I wish I hadn't waited that long.
Thanks SeasideSusie, I'll go through my previous posts and results and make some notes. I agree, he probably won't like me challenging him, no doctor does. He is on the list with Thyroid UK so, though I know they can't recommend, I did expect him to have some idea. Why do they expect you to jump in with T3 x3 per day when many say to start slow and also reduce your levo? Despite being a registered nurse for many years I still get confused with thyroid issues, I just can't seem to get it so unfortunately I tend to do as the consultant advises. It certainly sounds sensible to increase my Levo so I'll work on that or if he can't explain why not, I'll have to put my big girl pants on and do as you did and just tweak it myself.
This will be my 2nd appointment with him. I wish I was as confident as you all sound and so glad you're well again. Thanks again for your time and support. X
I think we would all be surprised if we queried how the GP 'guesses' if the patient was hypothyroid, without blood tests!
None of any of the doctors I saw could diagnose a patient with hypothyroidism as our 'old fashioned' doctors did. They knew all clinical symptoms and could recognise in their patients the possibility of a dysfunctional thyroid gland and patient was given a trial of NDTs (natural dessicated thyroid hormones).
To be honest, as most endos are diabetes specialists, it's very rare to find one who understands/knows anything about thyroid. I think this is why many T3 trials fail, they just don't understand how to introduce it, how to interpret test results when on T3, and, of course, they don't kow how it feels unless they or someone very close to them is hypothyroid.
For me, confidence has come with age and being dismissed by doctors in the past. I can now stand my ground and say no if I'm told to reduce my dose when I know that the FT4 and FT3 are the most important tests and they are in range, and the GP is only looking at a low TSH. I explain why the FT4 and FT3 are important and the TSH isn't, but they ignore that because it's not what they're taught.
My own gp's are not interested at all in my thyroid, as they say TSH in range which is why I went to see a private consultant in Oxford who at least seemed to listen to me, but maybe that's because I was paying. Regarding my Vit B, the only one I got tested was B12, initially 137 (25.1-165), then 326 (145-569). As they seemed quite good I guess this was why I never added a supplement. Are there other tests or should I just take a supplement? Thanks again.
Regarding my Vit B, the only one I got tested was B12, initially 137 (25.1-165), then 326 (145-569). As they seemed quite good I guess this was why I never added a supplement.
OK, so 137 (25.1-165) is Active B12 done in May and 326pmol/L (145-569) was done in September.
They are testing two different things. The Active B12 test measures the amount of free/unbound B12 that available to the cells, and the other is a Total B12 test which measures both bound and unbound B12 and doesn't differentiate. Some say that the Active B12 test is the better test and it's the one I tend to go with. Your Active B12 level was good in May. I apologise, I must have had a quick glance at your Blue Horizon tests, saw 326 and didn't realise it was pmol/L, I thought it must be pg/ml and that would be low. A minimum of 550pg/ml is recommended and around 900 is better. 326pmol/L = 442pg/ml so your Total B12 was quite low in September but it doesn't mean that your Active B12 necessarily was.
However, in May your folate level was 8.4 (>2.9) and in September it was 11.2 (8.83-60.8). These are low levels and I agree with what SlowDragon said in September when she suggested you take a B Complex to improve your folate level and this would also maintain/improve your B12 level. My preference is Thorne Basic B. If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.
When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).
yes I have to keep reminding my doctor that the TSH will be supressed as I am on T3!20 years ago when I first went on T3 after total Thyroid removal, the Endo told me to reduce the 100mcg T4 I was on to 75mcg and add the T3 20mcg the next day! Of course I didn't know any different at that time, and did as I was told. No wonder it took me ages to feel any better.
They haven't learned much in the last 20 years have they? I got much the same a month ago, reduce levo from 100mcg to 75mcg and start T3 15mcg 3 x day. RAI in 2011 and just levo till now. Bet it's the same consultant x
No, it wouldn't be the same one, the one I saw then retired years ago. I have since seen a woman endo a couple of years ago, she wasn't much better!when you try and tell them that you are clued up about the thyroid, they don't like it and think you are a smart ass!
Do docs run Reverse T3 in the UK? Your numbers can look good but you feel crap with no energy, it it’s due to pooling and your T3. Ewing converted to a storage hormone. Agreed you should get your B vitamin levels good. Definitely increased T3 too fast. Minimum of 5-7 days before raising dose.
I’m sort of going through this at the moment where I had pooling and high reverse T3. Protocol is to drop my Armour to 1 to 1-1/2 grains (I take 4 grains=240mg daily as complete replacement). Then fill in with T3, titrating up to about 45-50 mcg per day. Allows the reverse T3 to resolve itself over about 12 weeks.
Thank you, no in the UK the doctors don't test reverse T3, all bloods generally except tsh are paid for privately unfortunately. Retrospectively yes I increased T3 too fast, every 3 days but as the consultant had said start on it x3 a day, then retest in 6 weeks. I thought this might be a compromise otherwise I wouldn't have been on the full dose very long before retesting by bloods. I find it very difficult to get this all in my head sorry despite lots of reading on the subject. We don't have Armour in the UK as I know of, also that seems a lot of T3 compared to me on just 15mcg day. Oh how I'd love someone to advise me I might be better in 12 weeks.
I really hope you get the best results very soon x
It can be done privately but most doctors won’t do it despite being asked, it’s more because they don’t want another thing for them to be questioned on as they don’t understand what to do with the results… they just say “it’s of no use” when actually it’s bad doctors who are of no use!
There's no background of your journey to be diagnosed with hypothyroidism on your 'page'. You've just put your name.
It is helpful and saves time and effort for members to answer queries that may be resolved by reading your 'journey' to be diagnosed as hypo. It also saves your time as you don't have to answer similar queries,
I have had ectopic heartbeats and my does of T3 needed to be reduced. Also it takes a while for everything to settle down - weeks if not months . Good Luck
Thank you SiouxieQ, I think that might be what will happen. I think I expected instant results and wasn't prepared for problems yes will probably take months for me knowing my luck. Hope you're much better now x
It takes me 3 months to get sorted with any medication change ......it's a long process. No ectopics now. I wish you luck it's a bumpy road but you'll get there x
Thank you, I expect I'll be the same but hopefully, like you, I'll get there too. You know what I wish, that I could laugh more and enjoy life again xxx
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