My endocrinologist is about to start me on a trial of T3 combined with my levothyroxine, and I wondered if anybody else had some experience of this? I'm hoping this is the end to my problems...
Some background info:
I'm male in my 20s.
Diagnosed with Hashimoto's in August last year. TSH was over 100 at the time and FT4 was less than 5. Anti-TPO antibodies were in the 2000s. I was sleeping all the time, had severe aches in my thighs, groin and stomach, couldn't concentrate at work, was wearing two jumpers (it was 25°C outside) and was having reproductive issues.
Was treated on 100mcg levo for several months during which I got puffy like a hamster, turned yellow, skin started peeling off my hands and feet, became so dizzy I could barely stand up, had spells of terrifying hypothermia, developed extreme nausea, bloating, constipation, burping, severe dental acid erosion (presumably reflux) and chest pains. I had really bad anxiety and occasional palpitations.
In December I started seeing an endo privately who had since increased my levo up to 150mcg. My last results were TSH 0.01, FT4 17, TT3 1.7. Based on this he has suggested I start taking additional T3 and I'm just waiting for him to write to my GP to get this sorted.
My current symptoms are general fatigue, depression, skin peeling off the palm side of my fingers (they are so pink and raw looking now), occasional dizziness/weird sensations, constant mouth ulcers and occasional cold feet and legs. I've also noticed that when I drink alcohol AT ALL (like one glass of wine) I feel terrible for about a week and all my hypo symptoms like freezing cold etc return. I'm worried this means there's something going on with my liver and conversion of T4 to T4.
October last year I also had checked: full blood count (fine), liver (fine), kidneys (fine), cholesterol (fine), B12 (low normal), Vitamin D (v. low), folate (low normal), calcium (fine), iron (fine), ferritin (fine).
Currently taking the following supplements: fish oil, vitamin D 800IU, selenium 100mcg. I also taken naproxen for foot pain (suspected Morton's neuroma).
Before this started last year I was a really fit, healthy 28 year old man. I used to go running several times a week... Now I'm lucky to walk around the supermarket.
Sorry for the long post but I wondered if anybody had any advice? Do you think adding the T3 is going to help me overcome my remaining symptoms? Do you think it would be worthwhile for me to investigate whether anything else (another autoimmune issue?) is going on?
Thanks for the help!
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HypoHim
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Your TSH is suppressed as expected on 150mcg but without the lab ref range it isn't possible to say whether your FT4 is good or middling. Without the lab ref range (figures in brackets after results) we can't tell whether your T3 is low. I'm not familiar with Total T3 anyway, more used to seeing FT3, but the fact your endo wants to add Liothyronine (T3) to your Levothyroxine (T4) suggests it must be low. Low T3 is what causes hypothyroid symptoms so I think you will find it beneficial.
There are many members taking T3+T4 combination (including myself) who find it more effective than Levothyroxine only. T3 isn't a quick fix though and it will take time for it to improve your T3 level and start working on those symptoms.
Low normal vitD, folate and B12 isn't good enough. We need optimal levels which for vitD is 75-200 and B12 at the top of range with folate halfway through range. Low levels can cause significant musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Neuropathy can be experienced when B12 is <500 so supplementing to the top, even over range, may help resolve the pain in your feet.
If you post your results with the lab ref ranges members will advise how much you should supplement. 800iu vitD is an infant's dose and unlikely to be helpful.
Sorry for not including the reference ranges in my post, I didn't have my blood test results in front of me at the time. I've got them now.
My most recent TFT results were:
TSH - 0.01 (0.2-4.5)
FT4 - 17 (9-21)
TT3 - 1.7 (0.9-2.5)
I did query before why they tested TT3 instead of FT3 and was told that in their experience TT3 is clinically more useful because the FT3 assay is very inaccurate (compared to FT4 for example). I did find this article mayomedicallaboratories.com... from the Mayo Clinic saying the same thing, so I am trusting they know what they're doing...for now.
What I find very strange is that every time my levothyroxine dose has been increased, my TSH has come down of course, but my FT4 hasn't really changed. It's just been fluctuating around between 15 and 19 even though my dose has changed by 50mcg.
Have you experienced any downsides or side effects from taking T3+T4 in combination? I had read other places that some people have palpitations etc when they first start taking T3.
The results with reference ranges for some of my other tests were:
Active B12 - 46 (25-165)
Vitamin D - 20 (50-200)
Red cell folate - 282 (158-1099)
Iron - 20.2 (10.6-28.3)
Ferritin - 189 (30-400)
That was in October. The doctor prescribed me 800IU Vitamin D which I've been taking daily since. We repeated the Vitamin D test last month and the result was:
Vitamin D - 73 (50-200)
Do you think I should increase the Vitamin D then? I could try supplementing B12 and folate too. I worry about buying OTC supplements though, because they are not properly regulated and you have no idea if they actually contain what they say they do. I wish the chemists could just sell you guaranteed pharmaceutical grade vitamin and mineral supplements without a prescription.
I strongly suspect my foot pain is actually an injury such as a stress fracture in my toe, but of course a GP diagnosed it as Morton's neuroma without even examining me. I'm being referred to an orthopaedic surgeon to have it scanned anyway, which is all I really wanted. If there's something physically wrong with it, hopefully that will show up.
HypoHim, I've only experienced positive effects from T4+T3 and from T3 only. T4 caused me a lot of problems including relentless palpitations which made it difficult to breath. The T3 seems to calm the adverse effects I have with T4 plus restored my deficient FT3.
Some people do experience slight palpitations, raised pulse and heartrate an hour or so after ingesting T3 but they usually subside within an hour or so as the peak levels in the serum wear off.
Well I'm really surprised that 800iu has raised your levels so much. I don't think you need to increase it especially if you can get some sun on your face and arms a few hours during the week. Most of us are satisfied with vitD just >100.
Active B12 >35 is rarely deficient but I would be inclined to supplement 1,000mcg methylcobalamin daily to boost it up the range. Jarrows Formula sublingual lozenges and BetterYou Boost spray are well regarded. I've used and like both. You should also supplement a B Complex vitamin to keep the other B vitamins balanced.
Chemists do sell vits/mins without prescription but it's usually cheaper to buy online. If you don't want to order online your local pharmacist should be able to order them for you.
HypoHim, your link doesn't work. Which is a shame because I was interested to see what they ahd to say aobut FT3 not being reliable. I've never heard that before, and can't see why it should be true.
The FT3 shows you how much T3 you have available fore use by your body, in your blood. The TT3 also shows the bound T3 and the rT3 all mixed up together and you have no idea how much of each. So, just because your TT3 is a decent level doesn't mean that it's all there for your body to use, the actual Free could be very low.
Quite apart from that, the only way to know if you are converting correctly is to compare your FT3 to your FT4. If one is total and the other free, you can't do that. I find it very odd that they would say that, and I would never assume that they know what they're doing! lol
It happens. Usually nothing to do with you but the way HU 'interprets' the links.
OK, so I've read that. And whilst I take their points, their arguement does sound a bit feeble - especially as they say much the same thing for FT4, but coninue to use the FT4 test. Seems to me they're just making excuses.
And I fail to see in what way a TT is Superior to FT3 because it gives us absolutely no idea how much free hormone there is available.
Even if you did an rT3 test along side the TT, you still wouldn't know how much bound T3 there was and therefore you wouldn't know how much free... You might just as well do no test at all.. oh... hang on a minute, that's what they usually do! Nothing! Oh, well...
What I found interesting was that, while there *are* accurate methods to determine the free levels (such as the LC-MS/MS method in the paper), they are generally only used to develop the lab references and are not used as standard tests for patient samples. The standard tests used are the more indirect methods, about which they say:
"Despite manufacturers claims, all current FT4 and FT3 estimate tests are binding-protein dependent to some extent. In fact, a recent study has shown that FT4 immunoassays correlate better with total than free T4 concentrations although this conclusion has been disputed."
"Currently, most clinical laboratories use automated immunoassays to estimate serum FT4 and FT3 concentrations."
"Unfortunately, current free hormone immunoassays, especially FT3, appear to be more variable and less reliable than total hormone measurements. Considerable confusion still surrounds the nomenclature of FT4 tests and controversy continues regarding the technical validity of the measurements themselves, and their clinical utility in pathophysiologic conditions associated with abnormal binding proteins."
This paper suggests that, based on the methodology used to estimate the free concentrations, those free estimates still end up being dependent on the level of protein binding. Which suggests to me that a just as accurate method of estimation would be to take the accurately measured total value and assume an average ratio of free/bound hormone.
Anyway...going to take this to my endo next time I see him to discuss why we're not doing FT3!
Well, basically, the tests and the ranges are a nonsense, anyway. Which is why doctors should take symptoms into account. But they can't.
I suppose it would be possible to work out a rough ratio of free/bound hormone - although I can't imagine that that would be very satisfactory, either. But then you would be obliged to do an rT3 test at the same time - and doctors wouldn't like that! It's virtually impossible to get an rT3 on the NHS, and most doctors Don't even know what it is. It would mean re-educating doctors across the board, and I can't see that happening!
I would love to be a fly on the wall when you bring up the subject with your endo! lol
I understand the difference between TT3 and FT3, but the problem is actually the accuracy of the assay equipment available. It seems that the current techniques are not accurate enough to give a true measure of the FT3. Having studied chemistry at uni I'm well aware of the limitations of some methods, and picomolar concentrations are very small, so I'm going to trust my endo for now. Thankfully he is a thyroid specialist and not diabetes like my last one
I'm well aware of all that. And of all the other draw-backs to present forms of testing - the unrealistic ranges, for one thing. But the Total test is totally useless.
It still seems to me that an inaccurate test is better than no test at all. The FT at least gives you some sort of basis to work on. How else are you even going to have an idea of how well you are converting?!
Sorry to jump on your bandwagon but like you i am wondering if T3 may help me? my latest results are:
TSH 1.53 (0.34 - 5.6)
FT4 15.70 (7.5 - 20.00)
FT3 3.30 (3.80 - 6.00)
I am currently taking 150mcg of levothyroxine and i am still experiencing what i call low thyroid symptoms such as unrefreshed sleep, very painful hips, and knees which sometimes wake me up at night, dry skin, cold hands,feet and nose, lack of energy or enthusiasm to get moving, puffiness on wrists and ankles, stubborn weight gain which i cannot shift etc etc etc.
I have asked my doctor for a referal to see the endocrinologist to see if the additional of T3 might help, i have received a letter from the Endo saying that in Somerset they are unable to prescribe T3 on the NHS and would need to apply for funding but they think it would be unlikely that in my particular case that would be possible despite seeing the Endo twice in the last 2 years for the same reasons of feeling that the T4 meds alone are not really helping that much. My FT3 readings have never been particulary good and certainly not optimal, a previous test came back as 4.2 (range
3.8 - 6.0)They have said that they think that my symptoms are unrelated to low thyroid and basically thats that and if i want a further appointment then i must contact them.
Clearly this is unhelpful but if i go and see them they will fob me off saying that T3 is not proven to be helpful in trials and that it costs to much! i am sure this is all to familiar to a lot of you but i am wondering how to approach this matter?
Is there anyone out there taking anything other that T3 to improve their FT3?
I am tempted to self medicate but have read that T3 is much more potent so wouldnt be happy going on my own. Wondering if i can see a private Endo who might presribe. Feel really fed up and let down by the NHS! i dont even mind paying but that seems to be nigh on impossible too!
Like you, I would be worried about self-medicating. I would be too frightened about what I'm actually buying or whether it's the right thing to do. Hopefully someone on here will be able to point you in the direction of someone, NHS or private, who might be useful. My private doctor could write me prescriptions but then I'd have to pay the full drug price at the chemist, so he writes a letter to my GP explaining what she should prescribe for me.
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