Hope this is not too long a post but please can someone look over my history and advise? I feel I want to add more T3 and reduce T4 but this may not get the support of professionals. I have CFS/Fibro since 1990. I understand that is going to affect my TSH due to possible defunct HPA axis feedback mechanism. Always did have low T4 and low or normal TSH and hypo symptoms. These have now got better since T4 replacement 2018 but I am not optimal enough to function adequately and can only work part time and struggling trying to finish my MSc. I have titrated up on T3 sourced by myself. This has amazingly raised my hypo am serum cortisol levels to normal (Thanks to the CT3 method) and improved cognitive function. I am however concerned that the TSH is suppressing and FT4 coming down again. Will have to confess to taking T3 as GP/Endo may reduce my T4. Taking T3 25 mcg (divided) each day 3am and 3pm. Get a midday slump so feel I need it 3 times a day which would mean an increase and further suppressed TSH possibly. Endo agrees CFS complicates things. Will I ever get it right? I was hoping to turn into wonder woman once on T3.
(I know the protocol for having blood tests done)
14/03/19 –GP test - on 100 Levo/25 T3 daily. (I reduced the T4 and titrated up T3 since Jan 2019 after Endo test 31/12/18)
TSH 0.02 (0.27-4.20)mu/L
FT4 12.9 (11.00-22.00)pmol/L
T3 not tested as GP requested. I need to test this myself soon as self-medicating. GP not aware yet.
31/12/18- Endo test –-was on 100 Levo/125 Levo alternate days.
TSH 0.21 (0.35-5.5)mu/L
FT4 16.9 (9-22.7)pmol/L
FT3 4.3 (3.5-6.5)pmol/L
Cortisol 10am 567 (119-618)nmol/L (This was below range for years)
Ferritin 164 (10-291) – I am supplementing since.
Nothing else tested this time eg B12 as endo said it has been done before and ok!!!
I currently supplement B12, selenium, K2, D3 and multi vits with iron. I am a vegetarian, little dairy, avoid gluten.
06/12/18 GP test- was on 100 Levo
TSH 1.19 (0.27-4.20)mu/L
FT4 15.9 (11.00-22.00)pmol/L
15/10/18 –GP test - was on 50 Levo
TSH 7.48 (0.27-4.20)mu/L
FT4 8.5 (11.00-22.00)pmol/L
03/09/18 GP test - prescribed 25 Levo
TSH 5.91 (0.27-4.20)mu/L
FT4 7.3 (11.00-22.00)pmol/L
03/04/18 GP- test no prescription
TSH 1.37 (0.27-4.20)mu/L
FT4 7.7 (11.00-22.00)pmol/L
Prior to these test going back years I have had low to normal TSH but under or lower quartile FT4, lower quartile FT3. To date antibodies positive and still high despite avoiding gluten.
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SandyMack63
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The first thing I noticed with these results is that some of the dates seem closer than 6 weeks together, so you won't have been on the new dose long enough to get reliable results. I'm particularly thinking of 6th and 14th March this year, one on 100mcg of Levo, and the other on 100 Levo + 25mcg of T3. Those are 2 very different doses and only a week apart.
I was also a bit confused about the Endo test dated 31/03/18, because lower down in the list it looks like you were first prescribed Levo on 3/9/18? Is there a typo somewhere, or were you on a substantial dose of Levo and got reduced down to 25mcg?
One thing I would say is its early days if you've only started adding T3 in the past month. Everything with thyroid hormone takes a long time, and tuning a dose will always take at least 6 months or so. It's possible you may still be Wonder Woman in due course
For some of your specific questions, do not be worried about a suppressed TSH. Most of us will end up with a very low TSH in order to feel well, and once in thyroid hormone replacement a TSH doesn't really tell us anything. The hard thing is getting a doctor to accept this. FreeT4 will also often end up being low when taking any kind of T3. This doesn't matter, either. The important thing is what the freeT3 number is. T3 is that active hormone, T4 is only a storage form that probably doesn't do anything, and freeT3 will most closely reflect symptoms.
Trying to make sense of your timeline, it looks like these two tests are before you'd ever taken thyroid replacement, last year:
03/09/18 GP test - prescribed 25 Levo
TSH 5.91 (0.27-4.20)mu/L
FT4 7.3 (11.00-22.00)pmol/L
03/04/18 GP- test no prescription
TSH 1.37 (0.27-4.20)mu/L
FT4 7.7 (11.00-22.00)pmol/L
In both of them you've got extremely under range freeT4. T4 is the main hormone made by a healthy thyroid, and this range is a normal curve, so most healthy people will be close to the middle, and the farther out you are the more unlikely you are to be well. These are pretty extreme results.
This low result concerns me for two reasons 1) It is super low, which means your body has very little thyroid hormone, which would make you very very ill. 2) Your own TSH is in the April not reacting at all, and in the September probably not as much of a reaction as I'd expect.
TSH stands for Thyroid Stimulating Hormone, and it's produced by the pituitary to call on the thyroid to make more hormone. When hormone levels (freeT4 and freeT3) get low, this should pop up to stimulate more hormone. Yours does not seem to be doing that. Which means there is something wrong with that whole feedback system. This can be caused by either problems in the pituitary, or the hypothalamus, which in turn makes TRH to signal the pituitary to make TSH.
1.37, your April TSH is completely spot on for a healthy TSH with nothing exciting happening. Which is not appropriate in this case. We can see from your two high TSH results that its not completely gone, but hasn't been on the ball enough to get your hormone levels up to healthy levels. It will probably have taken many years for your hormone to get this low, so this could explain years of illness. Some people are arguing that a lot of CFS/ME are forms of thyroid disorder not picked up on standard tests, and this is a more unusual thyroid condition. Especially as the TSH is fluctuating quite a bit.
This looks like Central Hypothyroid, and doctors are notoriously rubbish at diagnosing it. I'm not sure of the details of future testing, but you should be getting your pituitary examined, as it has a lot of other jobs besides just thyroid, and you may have other hormones and things going astray.
It looks like you may have had 3 sets of blood tests from this March? I'm going to assume that, anyway, let me know if I'm mistaken. Basically, prior to the March tests on below 100mcg if Levo you're still super hypothyroid. Unfortunately we have to go through this period of waiting and getting the hormone built up. Ideally get a retest and adjust every 6 weeks. On the NHS the wait will often be longer. But any test with less than a 6 week stable dose will not be reliable.
So in March you've been taking:
100 mcg of Levo
100/125 mcg of Levo alternate days.
100 Levo +25mcg of T3.
First comment on that, this is way too quick a change. Ideally what you'll do is pick one of these, stick with it for 6 weeks and have your retest. If you add in T3, you'll need to have a freeT3 test each time. This is super hard to get on the NHS. Most people pay for private testing as a mail order pin prick test. I wouldn't recommend self medicating at all without getting regular testing. Equally important is to slow down considerably, take everything slow and steady, or you will get in a pickle.
Other comments about these doses, it's fine to raise 25mcg of Levo in one go, you don't need to alternate days. At the time you were quite undermedicated, so an increase of 25mcg would be fine. On the contrary, an increase of 25mcg of T3 in one go is HUGE. T3 is 3-5x more potent that Levo, so 25mcg of T3 is the equivalent of about 100mcg of Levo. In this case you doubled your dose overnight. Most people would have an increase of about 5-10mcg. These 25 mcg tablets are a nuisance because even half a tablet, 12.25 is probably larger than you want to have as one increase.
If I'm right and all these tests are within one month, we can't draw too much info from them. I'm just going to look at one to give you a rough idea where you are.
31/03/18- Endo test –-was on 100 Levo/125 Levo alternate days.
TSH 0.21 (0.35-5.5)mu/L
FT4 16.9 (9-22.7)pmol/L
FT3 4.3 (3.5-6.5)pmol/L
In this case, your freeT4 is just over two thirds up the range. This still gives you quite a bit of room for an increase. I picked this one because you've got freeT3 here, and we can see its pretty rock bottom. This means you will probably need several of the small increases of T3 to get it near the top of the range, which is where you're most likely to feel well.
I'm not sure whether to suggest you reduce from the massive increase and start again slowly, or stick with where you are and tune your dose from there. In general my preference is to start on a dose I know is too low, and slowly build upwards. It's much more difficult to be in a situation where you don't know whether you're too low or too high, and even if you know you might be too high, it's harder to decrease because you're also waiting for hormone to wash out of your body.
It depends how cautious you want to be. I've tended to be super cautious all the way, but if you want to be more risky you could stick where you are. There's the option to drop back if you get into difficulty.
Usually when adding T3 to a dose of Levo, we drop by the equivalent amount of Levo at the same time. You needed a dose increase anyway, so you don't necessarily need to drop the whole 100mcg, but I would definitely consider dropping the Levo for at least part of the equivalent amount, at least about 50mcg, but you could drop up to 100mcg if you like.
As you are using Paul Robinson's protocol, you are probably taking pulse, temperature, and any other measures you can. Definitely stick with that. I also write notes as detailed as I can about symptoms, what I find hard to do, and memorable events that show off symptoms.
At this point, though, you definitely want to stick with whatever dose you choose for the whole 6 weeks and then take stock of everything and order blood tests. Also stick around and read the forum, look at a lot of other people's results and get confident in interpreting blood tests.
There is definitely the potential to end up as Wonder Woman, because you've got a lot still to try!
Thank you for your thoughts. I had committed some typos so have amended the original post. It makes more sense now. I have GP appointment this Friday so will discuss my progress and confess the T3. My cortisol is healthier, BP and PR returned to normal and breathlessness very much improving now on T3.
Oh good, this makes more sense! You've increased on the T3 over the past 3 months
In that case it's definitely a bit of an issue that you're March blood tet didn't include freeT3, because really TSH and freeT4 don't give much info when you're on T3. What you want to know is whether your freeT3 is where you need it. I'm in the same position, even my consultant can't get freeT3 done regularly.
I get a Medichecks or Bluehorizon blood test, and it can be useful that doctors don't know my true levels, because it means they can't complain about them.
It sounds like you are in good shape, and all you needed to do is find out what the freeT3 is. If you've still got symptoms, it can be good to find out freeT3 is relatively low and there's room for more increase.
Yes agree need T3 tested. Have a blood test due this month for the Endo which includes T3. Will see what it is. So just to clarify.....do you thinkI need to reduce T4 slightly? It has now sunk to lower end of range since dropping 25mcg and raising T3. Or since BP and PR all normal just continue? Supppose wait and see what next test says. Thanks for your help.
It's all trial and error to see if you want to be taking any Levo at all, or how much you want. If you add in some T3 but don't reduce the T4, you'll be having a dose increase. If you want to keep your whole dose roughly even but add some T3, you must reduce the equivalent amount of T4.
T4 doesn't really do anything in itself, and once you're on a substantial dose of T3 your body will hardly be using the T4 anyway. It's fine if it drops low or under range. The blood tests are really designed for people on T4-only, and they do need to worry about where their freeT4 is, because that's what they are depending on.
The most important number to see is freeT3, as that's the one most reflective of symptoms. When you see that, it will tell you how close you are to the right dose, and that will help you decide whether you want to increase or to swap out some T4
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