Hi all, my GP had recently written to my Endo with evidence to suggest that i'm not converting T4 to T3 very well since RAI.
I had provided my GP with all of my blood tests prior to RAI and prior to going back on block and replace to show a comparison of what my "normal levels" were before being solely reliant on levo. In that my T3 was always around 5.0 and my T4 around 21 (photo attached).
I've eventually received a response from my Endo who has stated the following (I'm a bit puzzled as the letter doesn't mention next steps etc). FYI since the last TFT I started taking T3 myself as had I not (and been waiting on the NHS), I wouldn't be function at all (I still don't feel great).
So his comments were (after saying that he couldn't recommend a trial of T3) "A recent rise in TSH with a normal T4 is almost always indicative of absorption variability. We would need to assess this as the reason rather than anything else in the first incidence".
What does this mean and what would the next steps be? Prior to my last TFT I was taking my levo religiously (same brand, with water, no food after etc.) for 6 weeks.
**edit** added update photo of TFT's which has an additional couple of TFT's in for Oct/Nov 20 when I first came off block and replace and went onto levo.
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Thyroidsam
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You haven't added a range but I can see your your FT4 is high by most ranges and FT3 low.
Your TSH is very high and I am guessing your Frees are practically in range albeit in extreme of normal range in which case it is unusual to see such a high TSH.
From December it seems disproportionately high compared to previous results, so wondering if something is Interfering results. antibodies can sometimes do this, ask if an alternative lab can test or arrange a private test which would also give you a full picture in 1 go.
When you test, do you test in early morning and delay dose until after draw. If you are taking dose prior to draw it may be showing a falsely high FT4 result. You FT4 may in reality much lower in which case you need a dose increase.
If you had an absorption issue surely your FT4 would be as equally low. The disproportionate levels demonstrates the discrepancy in conversion, so your specialist needs to explain further and suggest what steps to take.
Poor conversion is often seen with poor nutrients very common after hyper graves & RAI. Have you tested folate, ferritin, vitamin D and B12? In range is acceptable to doctor - you need optimal levels, share result which ranges once you have them.
I've posted a few times over the last couple of months, but to quickly summarise here: I started to go downhill (further) in Oct 21 where my T4 seemed to be rising and I felt terrible. I've not changed anything that i'm doing in terms of how I was taking my levo (the first registar that looked at my Nov TFT on behalf of the endo) just told me that I wasn't taking my levo right. I then had to beg to speak to the Endo at the end of Nov as I felt so unwell that I couldn't function. He took me off levo for a week then put me back on the same does of 125mg - from which I started to feel unwell again after about 4/5 days of taking it. He then lowered my dose to 100mg a day. The Dec blood test isn't particularly accurate as it was only a couple of weeks after reducing my dose but you can see how my TSH then just shot right up (I did a TFT at this point to find out my vit levels etc. after joining this forum). The odd thing being that after sticking to a very strict routine of taking my 100mg levo daily for 6 weeks, my T4 was still over range and my TSH still high. I had my vits checked during the December blood test and then were all ok other than low folate, so i've been taking a folate supplement since then (along with vit c spray, b12 and magnesium).
After doing lots of research on here, I was of the assumption that post RAI i'm a poor converter, which my results over the years suggest.
Sorry I forgot to add. The private TFT in Jan was a week before my GP TFT and they both use different labs as my GP one goes to a lab in Northern Ireland.
And how about testing times & when dose taken? The comment about absorption variability may refer to not having consistent levo and normally low levels & then taking a dose. TSH takes longer to respond so the Endo is implying this is the reason. Which is odd considering they stopped your Levo and then tested two weeks after resuming.
Edit : also, forgot to note that your FT4 has always been top part of range it’s now the FT3 which is low.
So TFT's were always any time of day over the years, as I was unaware of the need to test first thing in the morning (before taking levo etc). The December TFT was a private one that I did for my vit levels and just to see if my T4 was lowering (I didn't share that result with the GP or Endo). The private & GP TFT's in Jan were 6 weeks after reducing my levo to 100mg and consistently taking my levo with water etc. (i've always taking my levo at least 1hr before food). However, for my TSH to raise that much when I took a week off and then a lower dose probably doesn't equate 6 weeks down the line?
The one thing I would say is that you can see over the year when I wasn't feeling great my dose was being adjusted which if it was an increase, I could only tolerate for a couple of weeks before then lowering it again (I would get weird symptoms like one side of my thyroid hurting and generally feeling unwell, really dry mouth, banging headache etc. which I put down to taking too much levo?). However, in doing so, I guess the increase raised my T3 slightly for a few weeks before I then starred to feel a bit more unwell again. Even with my September results, I had an Endo consultation at that point and was complaining of feeling hungover, then come October I just felt worse and worse of the weeks.
Well one of the reason to wait 6 weeks after a dose change is to let levels including TSH settle. (Adjustment need time to show full alteration) so yes it is possible it has taken that long.
If previously hyper its not uncommon for the TSH to take longer to respond. What is good is that the TSH is actually responding. It’s not uncommon for the TSH to lag behind but virtually give up.
My TSH has stayed suppressed after being 4 years at a fairly low level hyper (doctors missed it) even now I been 3 years euthyroid on carbimazole it’s still undetectable.
"A recent rise in TSH with a normal T4 is almost always indicative of absorption variability. We would need to assess this as the reason rather than anything else in the first incidence".
What does this mean and what would the next steps be?
I don't think it means anything at all. He's just talking out of the back of his hat like most endos do.
For a start, what does he mean by 'normal'? In-range? But, where in-range? Judging by your results your FT4 range would be around 12-22, yes? Well, not all readings within that range can be normal for you, that's just not possible. So, where do we draw the line?
Secondly, if you weren't absorbing your T4 from the gut, your FT4 would be low and TSH high. And, the FT4 would drop before the TSH rose. So, I think he's just waffling to fob you and your GP off, counting on the fact that your GP won't know any better - and hoping that you won't, either! lol He probably has no idea what the next steps would/should be.
Thanks for the reply. I guess I was hoping that based upon the evidence provided to him that he would agree that i'm not converting very well - then start a T3 trial.
I started myself on T3 straight after my GP TFT on the 12th Jan and i'm now currently on 18(ish)mg a day of T3 and 75mg a day of levo. I'm nowhere near feeling right and still have lots of symptoms but I do feel better than what I did before starting T3... However, if I was still sitting here waiting on help from the NHS, I dread to think what state i'd now be in. Like most people on this forum, i'm just desperate to feel well and 'normal' again - if that is ever possible!
The problem is, endos aren't really the right people to help you. 99.9% of them are diabetes specialists, with no particular knowledge of thyroid, but think it's a doddle to treat. They often have some very weird ideas, and often make patients worse rather than better. And, what makes things even worse is that GPs believe they are thyroid experts and defer to them in treatment, when really, they'd be better off using their own common sense.
I agree! Maybe i've just been unlucky (there isn't a large selection in Northern Ireland and as far as i'm aware, no "thyroid specialist"), but i'm on my second Endo. I'll obviously not name them on here, but my first one wrote to me after I had contacted them at the end of Jun 21 complaining of symptoms (you can see my July TFT that my T3 had dropped - but I wasn't very clued up back then and just took everything I was told as being right) and said they had no idea why I was complaining of symptoms when I was "within range". For whatever reason, I was also put forward for RAI again! That's when I ended up being seen by another endo who took me off block and replace to see if my thyroid was dead ( it was). Since then i've had nothing but i'll health with the odd week here or there when i've not felt too bad. Whatever happened from Sept onwards has just made me feel the worst yet.
Oh, it's not just Northern Ireland. I live in France and I don't think there's one single endo in the whole of France that knows much about thyroid! And I've seen four or five of them. They just have no idea. And reading on French forums, it's the same throughout the country.
And, listen to our American and Canadian cousins on here, complaining about their endos! I think they're possibly even worse. It's a universal problem, I'm afraid.
HI Pennyannie, I guess I thought the endo would agree!
I'm really not sure, other than the inconsistencies around the time of day i've previously had TFTs. I had a few months from March 21 to around July 21 when I was eating more fibre - which didn't agree with me so I cut it out again - I had added in it because my stomach wasn't that great - but that seems to be the case when my levels aren't right, or i'm full of T4.
But taking everything into account, I don't seem to have had much stability in levels over the last couple of years.
I've got the list now for recommended specialists and i've just put my name down on a waiting list to see a "well educated" thyroid specialist in Dublin - however, their waiting list is extremely long (even with my GP referral letter, so i'll probably have to look to the Thyroid Uk list for a quicker consultation).
I've not had chance to speak with my Dr yet as I only received the very helpful advice from my endo in the post today ( a month after the GP asked for a referral to them). But I will mention tomorrow (hopefully) that i've started on T3 myself.
I've had days of not feeling so bad, mixed with days not feeling good so far, with various symptoms. I'd started on 1/4 of a 25mg tablet once a day for the 1st 4 days, then 1/2 a tablet for a week and now 3/4 of a tablet for the last 2 weeks and although my pulse was fine this morning, it's raised about this afternoon and I don't feel that great. However, i'm kinda back to feeling how I did when I first went to my GP back in Nov, in that I had a jittery feeling, slightly raised pulse, waking in the night on occasion gasping for air, and that was all when my FT4 was high and my T3 reasonably low. So waffling aside, i'm not sure if it's symptoms of my current FT3 level, or 2 weeks on 3/4 of a tab of T3 (I would presume my underactive symptoms would have gone if I was now overmedicated on T3).
*edit* Yet oddly enough, i'd felt well enough to go the gym for the first time in many months on Monday, but since then i've felt rubbish again..
I think you answered your own question in this edit ;
Your brain may have " woken up " in that mentally the gym was a good idea but your body will take a little longer to repair itself.
You need to go slow - and currently have a mismatch of brain activity and body ability.
Your recovery will take time so just be happy to know you have found a way forward yourself and able to think more positively and the rest will follow.
Please don't get " hooked " on exercising, it uses up a lot of energy and currently you are not well enough to pick up where you left off and in all honesty I think you must learn to living within your ability and not push yourself too much.
It took you over a year to come on here and ask questions so please do not think you will bounce back within a few months.
It's reasonable to assume the week off Levo is what sent TSH up so high... and although unusual , i think it may well take longer than 6 weeks to come down . it is coming down now .. but slowly (a lot slower than expected, i agree ).... did the endo remember you'd had a week off when writing his comment i wonder ?
I agree with PurpleNails . i think his 'absorption variability' comment is referring to "period of not taking Levo , or taking it with something that stopped it being absorbed properly , causing High TSH , followed by taking Levo correctly , then testing while TSH is still high", because it takes TSH longer to come down than T4 takes to go up.
But the fact he made that comment doesn't mean he necessarily knows /remembers that you were told to have a week off...
( it is standard practice/training for any 'complaining' patient with a high TSH and a normal fT4 to check .. "are they deliberately not taking it , but saying they are, then taking it just before the test so we can't tell they aren't taking it" .. it's the thing they always consider before considering anything else ... the question is usually answered by having the patient take it in a 'closely observed setting' . without telling the patient that's what they are really doing ..... then when they know for sure patient has taken the tablets, they check if TSH is still high.
He's obviously wanting to address the reason for the high TSH before considering adding any T3 which does make sense .. sort of .
But if he didn't see the December test . he won't know it went that high as a result of one week off.. and maybe this is confusing him as to why it's so high now ?
My TSH seems to lag behind what's going on with my fT4 by many months.. so i wonder if your is too ?
Hi tattybogle. It's a long time ago now, but I do believe when I was on block and replace after initially going overactive back in 2012, that the endo I was seeing at the time would comment about my fluctuating levels (I worked abroad and would take a lot of protein powder etc. then, but even so, when on levo I just never seemed to stablise. It was only when I came off block and replace and had around 3 years of normal thyroid function that the symptoms I got when I levo vanished (that's me reflecting back for what I now now).
Yeah I get what you're saying. The registar who looked at my Nov TFT when I was screaming for help bluntly said that it was probably due to not taking my medication correctly or taking it with something else (I had a prescription of ompramzol on my record so he mentioned that), however, I wasn't taking it or anything else around my levo. The only thing I had done was stick to 125mg daily and 150mg every 3rd day, where as earlier in the year i'd have taken more for a few weeks then reduce when feeling awful. That said, the evidence is there to show that my FT4 seems to have to be well over range in order for my FT3 to be at a medicore level.
Unfortunately, as you know, it's an absolute nightmare when you can barely function and you're not really getting much help to resolve it.
Yes it's definitely in the 'not funny' box .... 'specially when they don't have the decency to believe you when you say "yes , i can definitely figure out how to take a tablet every day . thanks "
Still ... you seem to have got the right idea ... "if you want somethin' done proper ... do it yerself"
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