I am not a stranger to these forums and have posted many times about seeing 3 GP's and now 2 Endos and being prescribed 25mcg of Levo Mon - Fri (50mcg Sat and Sun) none of these professionals are willing to increase my prescription - there are no contraindications.
This treatment has done nothing but drop my TSH to an average of 3.5 - 4 and push my T4 and T3 about 20% lower now than before treatment. Tried NDT for about 2 weeks in December before feeling a bit odd and going back to Levo. All Iron, Ferritin, B12, D3 and Folate firmly in range now after supplementation and I have no evidence of antibodies.
After 6 months I have now had enough and have started on Cytomel 25mcg (LA Pharma, from Thailand). first few days was fantastic and I felt great, now I have settled down and although it does feel better than T4 (I don't get the joint ache) I think that now after 10 days either my body has got used to it very fast or the lack of T4 is now having an effect and maybe I should take a combination of the two.
I have no idea if the LA Pharma is the real thing or even what is in it to be honest, it comes in 100mcg tabs which I cut in quarters. My waking oral temperature was always 35.8 and despite the T3 this has not changed in 10 days of taking the T3 only protocol.
my plan was to take T3 only for 4 weeks and then do a blood test to see where I am. If it does not work I might try and source some pharmaceutical grade T3 and try again, maybe with the addition of T4. If that does not work then I might just bin all treatment and go back to where I was 6 months ago and just live with a high TSH - to be honest this does sound like the most attractive option and would be quite liberating.
Oops, quite a long post, thanks for reading if you got this far.
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hankpym
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Well, just had a chat with these people, and they seem ligit. But, they're aiming at body-builders, not hypos. Still no reason not to take it, it's certainly cheap enough! But, if I were you, I would remove the name of the supplier from your post! It's not allowed on here.
I’m no expert but looking at your other posts, aren’t you doing all these changes too quickly so you never see the full effect? If your tsh was high still, why not up the levo incrementally to get it down? I’ve done that and am massively better. Still not prefect and like you will try t3 and NDT in due course.
Just seems you’re going too fast, not letting body adjust, and. It taking obvious route to just keep increasing t4.
I was started on 25 in June 2018, and have progressively upped level to 100.
Also, why not see an Endo recommended here who will prescribe t3 and knows to get tsh under 1?
I suppose seeing a private endo could be an option but this is costing me so much money with time off work for consultations, blood work etc that I am not prepared to do that at this stage. Is it likely that a private endo can overrule 2 NHS consultants? I could be just wasting more time and more money.
You can buy the equivalent of levothyroxine over the counter in Portugal and Spain, probably other countries as well. I just ask a friend who is going on holiday to get them for me while she/he is there. I have printed out a picture from the web of the sort of box that is sold in the country they are going to, so that they know which ones to get. It
Hi..., did you try taking in a copy of Dr Tofts interview with a GP to your GP re your TSH level - I found my GP very interested and receptive to this and she gave me the increase...., my TSH was 1.5 (0.2-4) and she gave me a 25mcg increase 👍. I’ve only just started this increase so can’t let you know if it’s worked yet 🤞🤞
Yeah I know, but Levo at that strength is doing nothing for me at all. At least I can feel the t3, even though it might be understrengthed according to some reports.
Also, if you are taking 25mcg T3 in one go it might be too much for you. Are you able to split this dose? When I started with T3 only I took 6.25mcg twice a day and built up from there. I’m now on 62.5mcg, it’s taken me a while to get to this amount.
Just a thought before I had my thyroid removed in Oct 2015 I was not on any medication. I was then put on Levo and for 8 months felt really ill. I then joined this site, not knowing anything about the thyroid. This was after visiting two different Endos, both were useless.
I was advised to do a full thyroid private blood test and post the results with the ranges on here for answers. I did and listened to the good advice I then started self medicating with NDT. It took a while no quick fix but I feel well now and back to doing my Yoga and working out. I am 72 years old too. The only way I have become well again was to listen, act and be patient. You could feel well too. No private Endos, no GP's.
I admire your *Strength*. Your very *Inspirational* Bunnyjean . We are our own *Advocates* after all . Who Better understands how we feel and what our *Needs* are when it comes to thyroid meds and dosing and *Well-Being*. ????
My TSH was high, probably for years as I've had hypo symptoms for 40 years but never diagnosed - feeling cold, never feeling refreshed when I wake up and for a few years always being tired; otherwise felt well and very healthy. So I think you can feel well with high TSH but maybe eventually as you get older; I'm 72 now; your thyroid will start to fail, as mine has - TSH becoming more raised overtime.
The body is an extraordinarily complex system with feedback loops at different levels, down to mitochondria in the cells, so, unfortunately, it's not a simple process like adding petrol to the tank, or perhaps adding some alcohol to boost the octane, or running on straight alcohol.
You really cannot determine anything meaningful in such a short period of time, though I completely understand your frustration and desire to have this resolved. One thing I have learned: whatever you do, keep good records, both of what you did and of how you felt, in all the measures you know to take. I have found my morning body temperature to be the most resistant to change, and presume this is because of all of the feedback loops involved.
Don't give up on the treatment, and if they're letting you have a hormone treatment, accept it, even if you aren't taking it now. You may find some odd combination that works, such as a dose of LT4 once a week, plus the liothyronine daily.
Hankpym, thanks for raising this issue. You made me think, and I did some research. The recent article here: ncbi.nlm.nih.gov/pubmed/293... doesn't recommend dual therapy (T4/T3) but explains, in several tables, the various protocols that have been used in studies. I'll summarize the options below. The years when these studies were performed is interesting, too, since there seems to have been some LOSS of knowledge over the decades.
Year of
Study: Treatment (LT4:LT3 ratio)
1970 Reduce dose of LT4 and 20 mcg LT3 for a 4:1 ratio
1970 Start with ratio of 9:1, then decrease to 4:1, then 3.33:1
1999 Max LT4 50 mcg plus 12.5 mcg LT3 (ratios vary from 3:1 to 15:1)
2002 Ratios of 10:1 or 5:1 (different groups)
2002 15:1 twice daily dosing LT3
2003 6.6:1 twice daily dosing LT3
2003 Cut existing LT4 in half, add 12.5 LT3
2003 Reduce LT4 by 50 mcg and add 10 mcg LT3 (all on >100 mcg LT4)
2004 Reduce LT4 to 95% and substitute 5% LT3 (14:1 molar ratio)
2005 5:1
2005 Reduce LT4 by 50 mcg and add 10 mcg LT3 (all on >100 mcg LT4)
2005 Ratios of 10:1 or 5:1
2005 Ratios of 15:1 followed by 12:1
2009 Ratios of 2.5:1 and 8:1
2009 Reduce LT4 by 50 mcg and add 6.25 mcg LT3 (all on >100 mcg LT4)
2010 LT4 dose of 1.6 mcg/kg body weight, reduced by 25 mcg, add 12.5 mcg LT3
2016 5:1 ratio
All of these had outcomes within normal clinical ranges, which is why clinicians don't care to let patients find what works best for them. This shows, however, that you can work with a broad range of ratios.
If you type NDT from Thailand into Google, the first one to come up appears to be a reliable source of sealed, pharmaceutical hormones (LT3 and NTD) from IOS manufacturers, shipped promptly by a person who understands our needs because they are her needs as well.
I wonder if anyone has experience taking LT4 less often than daily.
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