My endo has suggested I try T3 as she insists that my TSH is fine for my age (62)
My latest results
TSH: 2.92 (Range 0.3 - 4.5) 62.38%
FT3: 4.3 pmol/l (Range 3 - 6.5) 37.14%
FT4: 1.1 ng/dl (Range 0.8 - 1.8) 30.00%
These don't look normal to me, and SlowDragon confirmed my thoughts in an earlier post... suggesting I increase my dose from 25mcg to 50mcg, which seems like a good plan.
I asked the endo but she's worried I will go hyper again (I have Graves as well as Hashimoto's antibodies, although not as much, and TSH went to 0.01 when I was on 75mcg) She wants to introduce T3 as she thinks I might not be converting T4 to T3. My FT4 is quite low too, so I'm not sure about that, although I read that you need zinc to convert and mine is very low despite being on 50mg supplement for over 6 months... she thinks that this may be a gut absorption issue and that I should see a gastroenterologist as well. The rest of my vit and min levels are OK... vitamin D is 50 ng/ml, B12 is 614 pg/ml , Ferritin is 118 ng/ml, Folate is 10.0 ng/ml
So what's my question? I'm not really sure... fuzzy brain is one of my symptoms, so absorbing all this information is making my head spin! But I have heard that T3 has potentially scary side effects... so T3 or not T3? That is the question! I'd feel more comfortable following SlowDragon's advice, but don't want to alienate the last endocrinologist in my area! I've got the list of endocrinologists from Thyroid UK, if anyone knows one that does zoom or phone consultations could they send me a message?
Thanks in advance for advice and info... this group is invaluable! I no longer feel alone in the struggle to find my way back to me.
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Kriticat
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Oh dear. She's spectacularly ignorant for an endo, isn't she.
First of all this stupid TSH thing. Sigh. It has nothing to do with age. I really don't think doctors have the slightest idea what TSH is! Thyroid Stimulating Hormone. You are hypo on thyroid hormone replacement. Why on earth would you even need TSH? Well, yes, of course, you need it to convert, but that all. But, this idea that 'old' people have higher levels of TSH and it's quite normal... That's people who aren't hypo and aren't on thyroid hormone replacement. When you are taking exogenous hormone, and taking enough, your TSH should come down to 1 or under, like every one else. Besides, the difference between the TSH of an 'old' person, and that of a younger one isn't that much.
Anyway... so she thinks your TSH is fine 'for your age', but wants to give you T3? Does she realise that will considerably lower your TSH? Probably not.
She wants to introduce T3 as she thinks I might not be converting T4 to T3.
These doctors and what they 'think', cracks me up! Why don't they just do the right test and find out?!? Well, here she has done the right tests, but she doesn't understand the results. As things stand, there's nothing in the least wrong with your conversion. It's very good. So, what an intelligent person should do is increase the levo and see if it continues to be good as the TSH drops - and drop it will if you increase the dose, regardless of your age.
she thinks that this may be a gut absorption issue
Here we go again. Your absorption isn't that bad, as shown by your thyroid results. It's just that your dose is too low. 25 mcg is a rediculously low dose. And increasing it to 50 won't 'make you go hyper'. I'm not quite sure how it works when you have both Graves' and Hashi's, but it's certainly not levo that would make you 'go hyper', it would be the Graves' antibodies. She should understand that!
As for the zinc, that's a huge dose you're taking. How low is your zinc? Have you had your copper tested, as well? Do you take any other supplements?
But I have heard that T3 has potentially scary side effects...
What scary side-effects? T3 is a hormone, not a drug. Hormones don't have 'side-effects' if they're taken correctly. Taking too much or too little can cause symptoms, but any side-effects would come from the fillers in the tablets, not the T3 itself. I take T3 only, and at the moment, I'm taking 75 mcg a day - with no side-effects.
That said, I do agree with SlowDragon that the best course of action would be to increase the levo and see how it goes. Increasing your dose to 50 mcg would hardly take your low levels over the top of the range. It would take a lot more than 25 mcg to do that.
Thanks so much for the detailed reply, really helps me begin to understand what is going on... though it's harder to understand how an endocrinologist can be so mistaken!!!
I'm having lots of other tests through a GP for other issues, and am trying to write an update, but my Zinc level is clearly a problem... when tested in March it was 63 (Range 50.0 - 120.0) but after a few months on 50mg Zinc Gluconate it has actually gone down to 61!!! Kidney problems or gut problems are suspected....more tests tomorrow!
Glad to hear that T3 doesn't have side effects... reading round the forum it seems lots of people want to get T3, what is the logic of trying T4 first?
If you can be well on T4 montherapy, it's by far the cheapest and easiest regime to follow. That's all, really.
As for the zinc, it's weird that you can absorb the thyroid hormone, but not the zinc. Did you get your copper tested? Because high copper will cause low zinc.
Here in Greece T3 is just as cheap as T4, and is in fact cheaper than Tirosint, so not sure why they don't just give that in the first place... Yes, copper was tested recently, and although it's quite low it's well within range, since I've just got to keep an eye on it. Apparently low Zinc combined with high calcium and phosphorus could be a kidney issue... ultrasound tomorrow to see if there's a problem there. My biggest concern right now is the excruciating pain in my wrists and thumbs which has been diagnosed as de quervain's tenosynovitis. It's a repetitive strain injury but there's no reason why I should have it, especially not in both hands... I can't help feeling it's somehow connected.
OK, so T3 is cheap in Greece, but T4, if it functions correctly, is still the easiest to deal with. Also, it's long half-life means that if, for whatever reason, you are unable to obtain your thyroid hormone at some point, you will still have some to fall back on for a while. Whereas T3 leaves the body much more quickly.
I would first of all trial an increase in Levothyroxine, as outlined in the reply by greygoose , as you are clearly under medicated Kriticat. Many of us only feel well with a TSH significantly under 2. I, like many others, personally only felt better when my TSH was nearer 1.
If your endo is jittery about TSH levels now, the addition of Liothyronine will certainly lower it further, as this just happens with combination treatment. You may not need to take T3 at all, as a higher dose of Levothyroxine could improve your levels and symptoms.
I’m definitely more of a tortoise than a hare when making dose changes, as I’m very sensitive to changes in medication, so I would increase by 12.5mcg initially, then add a further 12.5mcg when settled on this dose. Other members however are fine increasing by 25mcg in one go.
Do you have the ranges for your vitamin tests, as these can vary between laboratories? It’s important to remember that when GPS say vitamins results are ‘ok’ or ‘within range’ this is not the same as optimal. I followed advice from SeasideSusie to get my key vitamins optimal and this hugely benefitted my thyroid health.
I would look to improve vitamin D. I use Better You 3000 D3/ K2 spray, although I think SeasideSusie recommended a soft gel form recently, so will tag her to jog my memory
Your Vit D level is perfect. The Vit Council, Vit D Society and Grassroots Health all recommend a level of 40-60ng/ml (100-150nmol/L) with a recent blog post on Grassroots Health recommending at least 50ng/ml.
Yes, I take 1000 μg B12 methylcobalamin, Thorne Basic B complex, 50mg Zinc Gluconate, mag2 magnesium pidolate 10ml ampoules (1.5g/ml) and 1000mg fish oil
The others are all good, although you should be able to maintain your B12 level with just the B Complex now, there shouldn't really be any need for a separate B12.
Calcium is at the top of the range, maybe discuss with your GP as you certainly don't want that to be high, also phosporous is over range but I can't help with that.
Yes, now I've got a good b complex I will drop the sublingual b12. I eat very little dairy (just a bit of sheep's yoghurt) so not sure what to do about high calcium and phosphorus, but that's why she took me off vit D... and it has dropped slightly as a result. Just had ultrasound on abdomen and kidneys, apparently all is OK there...wondering about low stomach acid or maybe getting tested for H.Pylori
On T4 I had awful clinical symptoms and the worst were severe palpitations - especially during the night - and cardiologist was contemplating putting an implant in my heart 'to see what was going on' but did not have to as T3 was added to T4 but all symptoms resolved when I took T3 alone.
I'm not sure if I do have Graves, my TSI antibodies showed a reading of 2.6 and apparently it should be less than two. Can you explain why it is important to be on a high enough dose of T4 before introducing T3? Is it just for financial reasons? Because here in Greece T3 is not expensive, and is actually cheaper than Tirosint.
As soon as you add almost any dose of T3, then TSH will very likely become suppressed. So your own thyroid output is turned off
If not on high enough dose levothyroxine, this will cause problem
So standard treatment is to increase the dose levothyroxine slowly upwards until on full replacement dose (usually approx 1.6mcg levothyroxine per kilo of your weight)
Get all four vitamins tested and optimal by supplementing if necessary
Address any food intolerances
If after this ….Ft3 remains low …..then consider adding small doses of T3.
That makes sense! I've been following your advice and have increased my 25μg dose to 50 for the last few days... haven't told the endo yet!
Having done the coeliac test am going back to gluten free, and I eat very little dairy and no soy, so fingers crossed there are no unknown intolerances.
I think my vitamin levels are optimal, but will keep taking the supplements and will test everything again in 6 weeks. Hope I start feeling better before then
Thanks for your advice and encouragement... I am so glad I found this group
This endo....supposed to be a specialist....is also talking rot about T3!
T3 is the active thyroid hormone and for good health must saturate nearly every cell in the body....your FT3 is abysmally low, you are undermedicated suffering the consequences
Because you are undermedicated on what is a starter dose of 25mcg (for the frail) there is not enough T4 in your system to convert to T3 so your FT3 is low. Your low FT3 has nothing to do with poor conversion....conversion looks fine.
As for going hyper....I think she means overmedicated....so long as FT3 remains in the ref range there is almost zero chance that you will become overmedicated.
You mention having Graves antibodies....
How high was your TRAb result. Your FT4 and FT3 are too low to suggest Graves, can I assume that the result was borderline?
And as for T3...I take 100mcg T3-only daily.....that is what my body needs to achieve an adequate cellular T3 level to allow me to function. Medics don't like that because they do not understand how T3 works in the body....and are afraid of it!!
T3, like any other medication, can cause problems if incorrectly used and overdosed. You take what your body needs....no more! The body will soon raise red flags / signs and symptoms if the dose is in excess of need. I have taken 200mcg before that happened....and I'm far from dead!!!
I suspect your problem is HYPO rather than Graves/HYPERthyroidism and increasing your levo dose initially to 50mcg is the way to go as the others have already suggested...you may very well need further increases.
You don't need T3 right now( if ever) so start by pushing for more levo....your labs clearly show undermedication. Both Frees should roughly be approaching 75% much higher than yours!
Have you recently had a full thyroid test to include TSH, FT4, FT3, vit D, vit B12 folate and ferritin
Low essential nutrients negatively affect thyroid function
Thanks, yes I am definitely hypo with Hashimoto's, it was the original treatment with 75 mg of T4 that reduced my TSH to 0.01, and with a reduction to 50 mg of T4 it was still only 0.02, so I think this is why the Endo is worried about increasing back to 50 mg. I don't know what the TRab is , I was tested for TSI antibodies and was only slightly over the range(2.6 when max should be 2.) It may have been me and not the endo saying I was hyper not hypo, she could well just have said that I am over medicated, I'm afraid that quite often I seem to forget a lot of details! Brain fog is probably my worst symptom!!! I think I should start to record all my consultations so I can play them back and try to properly understand what is going on!
Yes, I've had the TSH, FT4, FT3, B12, Ferritin, D3 and folate tests recently, as per my reply to Buddy195 above, everything looks fine. Zinc is the only low number and it's not dangerously low.
I noticed phosphorus is over range in your blood test results, is that why you’re being referred for more tests to look at your kidneys? I’ve been hassling our local water company about phosphorus in our tap water. I test the local river for phosphate and turns out they put it in the drinking water pipes to avoid lead poisoning and then strip it out at the sewage works before the water goes back in the river. Our river has had unexplainable high levels… hence testing and hassling. Hope everything goes ok for you and you get the answers you need 🦋💚🦋
Yes, I think so... that and calcium at max. We are lucky that our water supply comes straight from the mountain and is untreated but I might get it tested just in case...
Thanks everyone, I'm having trouble with messages disappearing before I finish writing them, so I wrote answers to you all in Notes to ensure I didn't lose them, now it won't let me copy them here, I'll try using the laptop when I get home tonight!
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