After a few bungled NHS blood tests, I've finally managed to get ahold of some full, up-to-date thyroid results. This is where I'm at currently, having been on 150mcg Levo since late July. (Lab ranges in brackets.)
TSH: 10 (0.27-4.2)
T3: 2.8 (3.1-6.8)
T4: 15.4 (12.0-22.0)
Not looking amazing, but I'm not losing hope just yet since I'm due for an endo appointment in the next 1-2 weeks. Just wondering what these results say about my conversion so I kind of know what to expect when I go to my next appointment x
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lau99
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Just wondering what these results say about my conversion
Nothing yet I'm afraid. TSH need to be down to around 1 (or lower) with FT4 as high as possible, then you see where your FT3 lies to know how well you convert.
Optimal nutrient levels play an important part too, so you need to test
Are you remembering to take levothyroxine everyday
(Weekly pill dispenser can be very helpful)
BEFORE seeing any thyroid specialist endocrinologist would strongly recommend getting FULL Thyroid and vitamin testing
Or insist that GP test vitamin D, folate, ferritin and B12
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. EXTREMELY important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
This looks to be a strong case for inadequate conversion. Your FT4/FT3 ratio which indicates efficiency of conversion is nearly 6/1. And with TSH = 10, the failure of current treatment is obvious. How do you feel on your T4 dosage? If not well, then a T3 addition seems to be the best way to go to get your FT3 well into the reference range. If TSH levels drop very greatly say down to less than 1 this should be no concern if FT4/FT3 levels are well within range- preferably the upper half. NOTE WELL: it is no use upping your T4 dose more on its own. I forecast the FT3 won't rise a lot whereas your FT4 will go to the top of the range or above.
I was absolutely gutted when my endo asked to titrate my dose down from 200mcg to 150mcg, because although I could understand the rationale, I just knew I'd feel awful on it. I was right! Low mood, terrible bloating + digestive issues, weight gain...all what I was worried about from when I was last on 150mcg. Hopefully this might persuade my endo to take some more drastic measures with my treatment?
It is apparent from this last set of results that your T3 has now fallen through the bottom of the range,
You have followed instructions and taken various higher levels of T4 - Levothyroxine - but surely when your endo sees these results it will be suggested that you are to prescribed a trial of T3 to take alongside your T4 in order to balance out your thyroid hormones.
No thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not maintained at optimal levels so these most probably need working on as they may well be in the NHS ranges but not necessarily high enough to assist the medication working.
I can only keep repeating what I've said before and know I sound like a broken record.
You are not well and struggling in so many ways - hopefully this new endocrinologist knows their stuff and you must be dosed and monitored on T3 and T4 blood test results with a view that both these vital hormones need to be in the upper quadrant of the ranges and at a level high enough to support you with a level of wellness that you find acceptable.
Take good care, guessing you're in isolation at University in Exeter.
P. S. :
In answer to the question - your conversion isn't good - just divide your T3 into your T4 : most people feel well when this is between 1/3.50 - 4.50 - T3 to T4 with most people preferring to be at around 4 or under :
However I have to say when I was declined a trial of T3 because of my suppressed TSH my conversion was coming in at 1/5.25 and the endo didn't think it was anything to be concerned about, so fingers crossed - however with a TSH at 10 they must do something for you, and it is not more T4- Levothyroxine, as they have already used that strategy and it has not worked.
P.P.S, ;
Just to say T3 is about 4 times more powerful than T4 and it will kick start your metabolism and bring your TSH down to where it needs it be, at around 1, or lower, and this is perfectly ok, and nothing to be concerned about.
You have lost your own thyroid due to surgery for Graves Disease and have therefore lost your own natural thyroid production and a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2. and calcitonin plus a measure of T3 at around 10 mcg daily plus a measure of T4 at around 100 mcg daily :
Thank you, Penny. You're right! I am currently in isolation or "soft lockdown" at the uni. I believe that should be lifted on Monday, though. I really hope and pray that I get the T3 and it helps me, if it doesn't I really don't know what I'll do.
All this strategy has proved is that you will not recover your wellness on T4 only and the next step should be to introduce some T3 - the active hormone that will kick start your metabolism and help with the relief of the symptoms being suffered.
Thank you, Penny. I just got a text from my GP saying that my new endo has requested that I go back up to 175mcg (though I can't see that helping much). No mention of T3 just yet. Hopefully it's just to hold me off of being super hypo before our appointment?
You can go into :- openprescribing - analyse - and enter your CCG or doctor's surgery and if you then enter Liothyronine ( T3 ) as the drug you can see how supportive your area is compared to others in the country :
It is obvious that you have a conversion issue and the answer is to introduce a little T3 to compensate for the amount your own thyroid gland would have supported you with.
You have been up and down on various levels of T4 prescriptions and been compliant with all their suggestions and nothing has worked well enough for you.
From my impression at my first appointment with him in July, he seemed not to be against T3 medication at all and even said that he would have given it to me based on what he'd seen on my record, had it have been 10 years earlier. He is reluctant now though because he is worried about the possibility of it someday being taken off the NHS, I believe. Other doctors in the same hospital/area are known to prescribe T3 as well, I think the CCG is Devon.
It's so hard not to regret my decision for thyroidectomy when I'm still so unwell. I feel like I was sold a lie.
I think it's more likely that he is more worried about his own career path and mortgage payments being met.
It's simply despicable - they take an oath - first do no harm -
How can he even say this to you - and look at himself in the mirror ?
So, if he was happy to prescribe T3 10 years ago why has he really changed his mind ? The actual manufactured medication compound hasn't changed, and people still seem to find T3 helps them, irrespective of where they live ?
If he won't help - and knows someone who will - can he pass over your papers ?
Please do not take this personally, there is nothing wrong with you or your body.
The fact is that had this happened to you around 20 years ago your doctor, finding you weren't recovering well on just T4, would have prescribed you a little T3 to see if that helped you.
In these past 20 years the price of Liothyronine has risen, just in this country, by some extortionate amount, and rather than review NHS procurement procedures, the NHS CCG decided that they should make this vital thyroid hormone more difficult to prescribe.
Doctors were instructed not to prescribe further prescriptions and encourage patients who were already on T3 to switch back to T4. and any new patient who might benefit from Liothyronine had to be vetted by the local CCG not for medical but financial constraints.
There is the the D IO2 gene thyroid hormone conversion test but have read that even if this proves you have a conversion issue, it does not necessarily guarantee your getting a prescription either :
The fact is your have lost your thyroid to surgery and have lost several thyroid hormones :- trace elements of T1. T2 and calcitonin plus a measure of T3 and T4 and if price restrictions were not paramount both these vital thyroid hormones would be offered to you on the NHS.
Just to add if you wish you can look back into the history of this T3 scandal and think the Thyroid uk website a good start : and you will see that we are still actively lobbying politically as to this current travesty and have all signed a T3 petition which has been talked about in the Houses of Parliament and now has currently been kicked upstairs to the House of Lords :
It's all so awful and corrupt...and I just can't believe that not a single doctor told me that the Levo isn't actually the magical cure they all assured me it would be, that it doesn't work for everyone and when that happens, the only other option available on the NHS is basically forbidden from the public. It just seems so callous to me that I had no warning...I was only 19, I was suffering and I thought I was making the right decision. I've shed so many tears over this illness, I didn't want the thyroidectomy, I just wanted it to be over and now I feel like I've made things even worse. I don't cry any less now than I did when I had a thyroid. Besides knowledge, I feel like I've gained nothing positive from this experience.
Your results suggest that your conversion is poor and that you need to be properly medicated!
FT3 is -92% (clearly very low!) through the ref range and FT4 is at 34% ( also low.
Both need to be close to 75% through their respective ranges.
TSH at 10 is too high and signals hypothyroidism and again, the need for better medication!
It would be expected that on 150mcg levo that FT4 would be higher but it clearly isn't and clearly isn't converting to T3 going by that low rate.
Important that you optimise nutrients as others have advised in order to support thyroid function.
Have you had antibodies tested to rule in/ rule out Hashimoto's ?
More levo isn't going to adequately raise FT4 at your rate, and consequently drop TSH, so I suggest that you need to add some T3.
The important thing is to ensure is that FT3 isn't over range...you have a long way to go before that happens!
TSH needs to be close to 1 ( even slightly lower) for good health.
I had a similar experience when my levo was raised from 150 to 175 mcg....felt awful.
My symptoms only began to resolve when I added T3 ( now, far down the line and much trial and error, I'm on T3- only and well)
I tested positive for the Dio2 polymorphism....inherited from both parents so a greater impact on conversion according to research.
Hopefully your endo will prescribe a trial of T3 for a long enough period for it to be effective.....months not weeks! I'm in Scotland and it has been ruled that anyone who has proved to need T3 should have it prescribed by an endo (not a GP).....proving the need can be the hurdle! The rediculous cost nowadays scares them off T3! Good luck with that.
I still buy my own T3 and self medicate, but now under the watchful eye of my new GP who herself has a thyroid problem.
Sorry this is a bit of a rant, hope something here helps!
Thank you so much for the in-depth response. Rather than Hashimotos, I actually have Grave's and was treated with a Total Thyroidectomy last April. Since then, I haven't yet been optimally medicated, and these look to be some of my worst results. I am due to see my (relatively) T3 friendly endo hopefully in the next couple of weeks. I pray that T3 really is on the cards for me, and if it is, that it helps because I feel and look terrible being so heavily bloated (among other symptoms)
150mcg?? And these results?? This suggests some level of resistance to the Levothyroxine?? And there’s certainly very little conversion going on. I have poor conversion but at least my FT3 stayed at 0% through range when my FT4 was at 16 (9-24) and when I increased Levo and raised it to 23.3 (12-24) it still only raised my FT3 to 3.9 (3.5-6.5) still only 13% through range.
So I really hope that they do introduce T3 because it’s the only thing that helped me 🤗
It's just insane to me...I'm at a loss for words as well. Even when I was on 200mcg and had a blood test done only a couple of hours after having taken my medicine, my T3 still sat pretty neatly within range. Do you know if there's anything that can be done for Levothyroxine resistance? I'm glad to hear that the T3 helped you, perhaps it can help me too x
Sorry lau99. I don’t know enough only gleaning knowledge from reading others and their experiences. When you were on 200mcg Levo did it at least register higher in your blood tests? I was on 200mcg to push my FT4 higher and it did 23.3 (12-24) but sadly I said I got minimal return on the conversion still.
I’m currently still on 135mcg Levo per day which keeps my FT4 up around 50ish% through range and then I’m on 25mcg T3 to keep my FT3 high 85-95% through range.
That's okay, thank you so much for even responding to my thread x My levels do seem to creep up a little bit the higher I go, but they're never really right. I also felt marginally better on 200mcg. The only full blood test I have from when I was on 200mcg was a bit skewed, as I didn't know I was going to be getting a blood test that day and so took my Levo only a few hours before I ended up having blood drawn. These were the results: TSH: 0.01 T4: 30.8 T3: 5.4
Best to scrap those latest results as they are false highs as you know.
Being on a high dose of Levo really didn’t suit me. I don’t understand it biologically because I had high FT4 but still extremely low FT3. I felt jittery and anxious and couldn’t sleep almost as if my FT3 was the one that was too high. It was a relief to lower my dose and be hypo again 😬
Yeah, I guess I'll never know what my bloods really look like on 200mcg... though for that dose, I feel like I'd expect to see a much higher T3 than 5.4, especially since I had only just taken my Levo a few hours prior that day. I still didn't feel well on 200mcg, but it was definitely better than being on 150mcg. I've now been instructed to go on 175mcg, and I'm just not sure when this'll all be over 😔
How much do you weigh and what’s your height. 150 mcg is a pretty high dose especially at your age.
Are you taking the meds first thing, empty stomach and not eating anything for an hour after? You could just be not absorbing the thyroxine for some reason.
Also have you tried a different brand of thyroxine.
Before having my thyroid removed, I was generally around 43-45kg, but since then my weight usually hovers around 47-50kg when I've been on the higher doses of Levo. The heaviest I've been I think is almost 60kg, about a year ago when I was still taking maybe 100mcg or 75mcg. I'm about 160cm tall.
I always make sure to take my thyroxine on an empty stomach and don't eat until at least an hour or so later. I have also tried taking it last thing at night about 3 hours after my last meal per the suggestion of my GP, but I didn't notice much change. I almost always get the Accord levothyroxine, but once before I've had MercuryPharma. No real side-effects or anything with either brand. I'm really not sure why on earth it isn't working properly for me
Really strange results then. At your weight I would think 150mcg is too high a dose.
Obviously I’m not a doctor but something is just not quite right with your results and I would demand an Endo referral. Perhaps take your parents/friend with you to the GP appt to demand a referral. GPs will need persuading and 2 is better than 1!
My doctors seem baffled too. I think this was part of the reason why my old endocrinologist refused to see me anymore a few months back, chalking my poor conversion up to "non-compliance" and using this as a reason to discharge me from his care.
I've since been referred to an endo that seems a bit friendlier and less afraid of T3 medication (as well as more thorough), but even he has only instructed me to go up to 175mcg Levo today, upon seeing these newest results. I am due to see him at an appointment soon, so I'm hoping that he's only asking me to do this for now so that I can manage my symptoms a little better before I next see him to discuss my treatment options.
Hi From my understanding it's just a different form of Levothyroxine? I'm not sure, but I don't know if that will help me since my conversion is so poor...
Hmm maybe you're onto something? I'm assuming just from your username that you might be from the US? that might be why I'm unfamiliar with any of these brand names, since we tend to only refer to medicines with their generic names here. As far as I know, all I'm taking at the moment is the standard Levothyroxine that's available here on the NHS. Is there a difference between Tirosint and Synthyroid?
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hope you've all been well.
Thank you for your input though, SeasideSusie x
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