I stopped NDT for 5 days prior to my TFTs, because I was supposed to be trialling LT4 and basically didn’t stick to it as I felt so poorly.
Came back with T4 and T3 in lowest part of range, and TSH almost completely suppressed. Oops.
Really thought there’d be a tiny rise in TSH. I don’t think I’m over replaced by the way, my basal temps are still super low, my tongue is scalloped and I get utterly exhausted and achey.
Would you normally expect a rise in TSH over 5 days with no replacement (I’ve had thyroid problems a long time if that’s relevant).
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If TSH is simply a little low it will respond quite quickly to changes in fT3 or fT4, within a day or two but of course fT4 will change slowly due to its seven day half-life. If TSH has been suppressed for several months or more it can take anything between a few months and a couple of years to recover.
That’s interesting to know. I chased up some old blood test records and I know my TSH was suppressed for around 4 years before starting carbimazole. It’s been over two years now and my TSH has now started to rise, still below range. So it’s taking its time.
That’s interesting, so even if I had just taken T4 they may still have seen a suppressed TSH. I’m now wondering whether I should fess up or not bother!
TSH will respond differently according to the cause of hypothyroidism. Your results as they stand now would indicate central hypothyroidism (a problem with the pituitary) but because you have just reduced meds, it would be prudent to assume T4 levels are still washing out.
Keeping TSH levels suppressed for many years can cause an alteration in the base line (mine never raises no matter what), and be aware that supplementing biotin can alter TSH test levels also.
All this exemplifies how inadequate the TSH levels are as an indicator for thyroid hormone levels. Your results will baffle them. If you can get private TFT's including FT3, and post results together with the amount of meds you are taking, members will comment as you sound very under medicated.
Thanks, I’ve been on 3 grains of NDT - more recently thyroid - s, thiroyd or T-Man for about 13 years. I haven’t seen the endo yet, but managed to get the results of the Tft’s. Which are attached.
Just a thought based on your reply - is it possible to have both long-standing autoimmune hypothyroid, and subsequently develop central hypothyroidism? I mean should I be asking them to look at that? There’s a part of me that doesn’t think I should be honest with them about the NDT and let them investigate why it’s coming up weird. Just in case.
Theoretically it would be possible to have both long-standing autoimmune hypothyroidism and subsequently develop central hypothyroidism but TSH levels are influenced by so many things such as excess cortisol or depression as well as a faulty feedback system or a down regulated base line, and yours is low but so what? The treatment is the same for both forms of hypothyroidism so it would be better to get your thyroid hormone replacement meds working than worrying about a low TSH.
Your FT4 levels are surprisingly low if you are medicating 3 grains of NDT, and not everyone needs adequate T4 when medicating T3 but some do. Your FT3 levels are just under half way through range. This is about where I work best but it is not for everyone and you may well need more. Also remember this is only a measurement of the amount that is free and not the amount in your cells where it works its magic.
I this were me I would be firstly looking at all the factors needed to ensure thyroid meds work more easily such as optimal nutrients, vits and iron. Everything is interconnected: ie elevated progesterone increases TPO activity and low progesterone can lead to low thyroid hormone levels; various nutrients are important for the manufacture/function of thyroid hormone such as vitamin A that aids receptor sites to activate thyroid hormone; and poor gut function resulting from inadequate meds means many are nutrient deficient; elevated thyroid antibodies can cause inflammation which down-regulates thyroid function and decreases a cell’s sensitivity to thyroid hormone (Datis Kharrazian).
Are you optimal in nutrients, vits and iron? Have you been tested for thyroid antibodies? Are you menopausal? Have you had sex hormones checked? Have you measured cortisol levels?
And then secondly, if improvements in TFT’s and symptoms wasn’t seen after addressing factors mentioned above I would look at either raising NDT or adding some Levo to bring up FT4 levels which with good function would hopefully convert to raise T3 as well.
That’s interesting because I’ve been on T3 monotherapy for 2 years with a suppressed TSH at 0.01. But even subclinical hypo my TSH was never above 1. Recently I was put on duloxetine for neuropathy and it sent me massively hyper. Amongst other nasty side effects, I dropped my T3 dose and went seriously hypo in record time but my TSH was 0.05. My GP is realising now how irrelevant TSH can be, and how fast FT3 can drop. The lab didn’t want to test at 3 weeks after the last test but he insisted, just as well he did or I’d have been a basket case
Be careful, the six to eight weeks applies to changes in levothyroxine dose and this is because the long half-life of T4 means it takes several weeks for T4 levels to settle down. The pituitary can respond quicker if fT3, fT4 levels change - provided TSH has not been exceptionally high or low for a long period.
We see this in experiments where subjects are given doses of thyroid hormone and have 24 hour monitoring, see how quickly TSH responds in Fig. 1 of this study sci-hub.mksa.top/10.1055/s-... . On the other hand if TSH has been very high, or very low for a long time it can take a very long time to recover as noted in some of the replies here.
I had a problem with my usual ndt supply which lasted several months. I was using Thyro Gold which is bovine rather than my usual porcine.No idea what the problem was but it wasn’t for me, serious digestive issues the whole time. At the end of October last year my results were similar to yours. TSH 0.014 so a little higher,
Late February blood tests showed I had a TSH of over 1. First time in years. So I think it probably took at least three months and both fT4 and fT3 well below bottom of range. I suspect like me you will struggle.
Really wish they’d look after us properly, I hate this feeling of it being a lottery, whether I can get my meds. or having to ‘sneak’ around sorting your own meds out. I remember it feeling like a lottery when I was on T4 too, just depending on what the doctor decided to do based on tsh could mean being poorly for a year. Awful.
Sorry to hear you have been having a tough time .I must confess I have always been given prescription hormone replacement, just not what suits me best anymore.
I was pretty hacked off when I was unable to get my usual ndt. Not to mention a little shocked that when I told my (new) GP and suggested a levo prescription she said no. After all I have had hypothyroidism for 60 years, they prescribed levo until I found a good ndt supply, and they have a scan of my dead thyroid.
Bless her she has moved on now.
I have found a mix of charm, knowledge and sheer determination is my best approach with GPs.
Here in the uk it’s just thyroxine unless you’re able to persuade someone to prescribe T3. So I’ve always bought my ndt and self medicated. The process I’m doing with these tests was to try and get onto prescribed T4/T3 but not sure it’s worth it if I have to go pure T4 first and feel so bad for so long... 😢
I too live in the UK so been through all the changes since I and all patients with hypothyroidism were prescribed ndt, then we called it thyroxine. It was just ndt, I never had anything other than porcine. Lots of changes in the last forty/ fifty years.
Gosh I didn’t realise, I knew that NDT had been avail here in the past, and actually for a period of about a year around 10 years ago I had my GP prescribing on a special order, but didn’t realise they were still doing it 😲
I'm having a similar problem in the UK. I've been self-medicating on Armour/Naturhtroid for nearly a decade, after my TSH kept rising on levo, with my GP dosing me at 250. I felt awful but endo at Kingston Hospital insisted it's CFS. I started getting tested for t3/T4 in Cyprus where husband is from (GP and endo refused here) and my T3/T4 is all over the place, some years very low, others higher but within range, TSH always 'undetectable'. With my 'evidence', the GP now tests for TSH, T3/T4 and have let me self-medicate due to what they call my 'erratic' results. I've asked to trial a return to T4 as it's getting hard to source Natuthroid/Armour now and I wanted to give the 'old' system a try. They did my tests and my T3 was more than double the maximum range (never been that high), T4 within range but top end and now the GP refuses to treat me at all, saying it's too dangerous at their level and I'll have to wait for an endo appointment, warning me it could be 6-8 months. They got me an ultrasound which showed an inflamed thyroid gland and small cyst, but the GP says I have to manage without medication until I can see the endo. I've just gone through menopause, so perhaps this changed things. It all feels so wrong.
Despite a career in sales, I so often forget to include charm in the mix with endos, I think because I struggle with the power they have over me! I am going to up the charm quotient for the next one to emulate your approach - thank you!
They have easily buttered egos! At least the diabetes ones do so I can see no reason it wouldn’t work on the others.I was a project manager working with multiple agencies. Only way to keep everyone singing from the same song sheet. Of course I wasn’t always thinkin* such charming thoughts lol 🙂
I was pretty hacked off when I was unable to get my usual ndt. Not to mention a little shocked that when I told my (new) GP and suggested a levo prescription she said no. After all I have had hypothyroidism for 60 years, they prescribed levo until I found a good ndt supply, and they have a scan of my dead thyroid.
That is truly shocking!!! There have been rather a lot of cases described on this forum over the years of doctors sticking to what they believe the rules are, and are so determined to do it they appear to be happy to kill people.
She has finally agreed to prescribe again, sadly it’s not on my repeat prescriptions. Does she perhaps think 28 days is a ‘cure’. I wil now need another appointment slot just to sort this out. A total waste of resources. I spotted a note on my file after agreeing that I could have levo again which states no more than 100mcg daily dose acceptable. Clearly I am to be kept hypo for evermore. The temptation to be a drama queen and suggest I take nothing and hopefully at some point in the future slip into a coma having told my family I. do not want to be treated I may die and slip away. She could stop my diabetes meds as well, might speed up my demise . I don’t do drama queen however! I had to explain that below reference range fT4 and fT3 were seriously not recommended for anyone. I think she really means well just is absolutely unable to understand. It’s hard to believe she has a medical degree, she doesn’t realise that test results mean nothing without lab ranges!
TSH is very responsive, for me at least, going up and down within hours of significant dose changes - there's also data from clinical trials available eg.... ncbi.nlm.nih.gov/pmc/articl...
But this study was done on normal volunteers. We would expect rapid TSH change because they were never under thyroid stress. The longer a patient has suppressed TSH, the longer it will take TSH, if suppressed, to respond if it does so at all under any medication.
Thanks - yes that’s what I thought would hapoen so really surprised it hadn’t - but - been taking NDT for some time and it’s always been fairly suppressed...
I was on T3 and T4 for 20 years after thyroid removal. A couple of years ago when the price of T3 went through the roof, my Doctor asked me to trial T4 only, to see if I could take that instead, which I agreed to in the agreement that I could go back on it if it didn't work. Needless to say it didn't work for me and I had to go back on T3. My TSH before the trial was 0.004 and after 4 months of the trial of T4 only it was still 0.004, so it didn't make any difference. My TSH had been suppressed for so long it wouldn't come up.
Thanks! luckily I have a good doctor who just needed to justify giving it to me. I couldn't tolerate too much T4 after all that time on T3 as well,it was giving me palpitations and pushing my blood pressure sky high.
FYI here's some of my thyroid results with dates. I suspected hyper and hashi antibodies but my test came out negative for TSI and TRab (but only tested after a long time in thyroid meds). I was told NOT to take thyroid meds for ages..when TSH was 3.6 etc (around 1990), but in 2000 an endo reluctantly put e on T4 but I got a German-trained GP to prescribe natural thyroid. This was too high in T3 for me and I felt best with a combo of mostly T4 (about 90mcg T4 equivalent in total)including about 1/4 grain to a half grain of armour equivalent. (natural pigs thyroid). I also tried some T4 and T3 combo. I think in retrospect the natural pig's thyroid probably didn't help as much as the T4/T3 would have as my antibodies kept elevated. I had very high Hashimoto's antibodies so naturally, these gradually destroyed my thyroid gland over the decades. I've had numerous horrid endos tell me I am doing this to myself re the thyroid gland destruction and being hypo over the years. My best memory is one endo who told me to get out as I was only there to pick her brains...and I always thought a consult was to consult on the specialist knowledge..ie "pick their brains"??
Anyway back in 2016 my immune system was playing up loads.. my heart beat went superwoman strong and thumpy and racing over 220... noone seemed interested...maybe I should have gone to a hospital ER BUT other times I get sent away..I had so many symptoms over the years I won't begin to tell you all. I got a GP appointment..first one I could get was in about two weeks...phone round and that was the best.. so I stopped my thyroid meds (I was on natural pigs thyroid and T4). My racing pounding heart settled gradually but by two weeks I was feeling hypo and phoned and I told the GP "I think I've made myself hypo? Does this Prove to everyone that I am actually now hypothyroid??>>I had thought the ultrasounds showing the shrunken thyroid gland destroyed by Hashimoto type destruction and tissue results should have been enough over the years)?? Anyway TSH was by then 110 and with low fT4 and fT3.
What settled my thyroid symptoms finally and allowed me to just take T4 only..and it works almost as good as the endos think it should?? Well, I went on steroids..ie prednisone (prednisolone) for PMR in NOv 2016.. This PMR was developing then when my heart raced but got worse, but as far as I know the heart racing is thyroid related, I have no known heart problems...jusyt got checked out again in Dec 2020.
Since the 1980's when I first got symptomatic hypothyroid symptoms and a slightly (over 3.5 TSH but normal range fT4..about 13 to 16..ideal for me is around 18 to19), I always firmly thought and even believed that the way to fix me and others I am reading on here was NOt to take thyroid meds(though if nothing else if offered that is all one can do to be able to rise out of bed!!).. but something to fix and stop the autoimmune attack. I was told that taking thyroid meds would lower the antibodies and it seemed t gradually reduce them but the autoimmunity continued as did the thyroid gland destruction (and perhaps brain, liver and other organs like blood vessels as well--- the Hashimoto's antibodies do not restrict themselves to the thyroid gland unfortunately!!)
I now have been on steroids for 5 years ..and my Hashi antibodies are suppressed and no more hypo or hyper symptoms. After a while on the prednisone, I felt "normal" hypothyroid wise with just 90mcg T4. Before this I could not take just T4 and feel OK. I also feel stable for the first time in over twenty years. I have been put on hydrocortisone for up to 3 months at a time by that German trained doc and occasionally prednisone for a week or two when I felt bad by GPs and it always helped! I was told that was just because steroids always make you feel better.. but it was really as they were suppressing the antibodies and allowing my body to function as it should (even if the the thyroid was by then damaged goods so would need some thryois meds).
OK, I do have osteoporosis (but I had that on my first test just after I started steroids and they say that was from taking thyroid meds that sometimes made me hyper!!!
I have now been diagnosed with SREAT or HE..and I wrote about HE back in 2006 (and got myself checked off a thyroid forum in the US for "scaring people). I then got upset about that and went away and basically cut myself off from everyone. I also have poor liver function and now brain damage..ie moyamoya like blood vessels and blocked MCA so I do not think well..and I believe all of this is from those very very high Hashimoto's antibodies which were not treated by the endos..as, I guess, that is not the fashion or how they are trained. I am very disappointed in the endo profession which seems to mainly concern itself with diabetes and seems to treated thyroid issues a "nothing much at all". I am writing this as many here in this thread have similar symptoms to what I had for decades. If this post helps anyone pursue a better treatment line (they do IVIG) and other treatments too.. then it was with it. Click to enlarge to read. I found my TSH responded within 2 weeks and thought that the suppressed TSH for that long when suddenly needing to operate just jumped a lot giving me a TSH of 110..which for the only time scared my GP! I struggled to get aTSH over 4 but I think that was because it was A gradual loss of thyroid hormone as opposed to a sudden stop (as happens with thyroid removal that endos are used to). This does make sense with 2nd order systems in engineering acting the same..as expected mathematically. But really the TSH of 110 was just sleepy and super relaxed, unlike hyper which is fatigued and wired.
Were you taking NDT only and stopped it completely for 2 weeks and then tested at 2 weeks ?
Did you return to normal dose after 2 weeks ? .....TSH seems to have taken a lot longer to go down that it did to go up, ...assuming it was 'normal for you' before the withdrawal of meds, don't know if that's a safe assumption given you were feeling so odd, but from symptoms it certainly sounds like it would have been lower than your normal, rather than higher at that point.
I still have my thyroid and My TSH probably went up to 7.897 from 0.05ish after a week and a half without any levo, .......
I stopped Levo completely for a week and a half , and then took usual dose for 2 days , and then tested as normal.
My TSH was normally around the 0.05 level and had been for 10 yrs... the TSH came back at 7.897 while the fT4 was similar to it's 'usual'.
There was nothing in particular that prompted me to stop levo , i just wanted to see if my blood results would stop being reported as 'normal no action' , as i was starting to suspect that what they were checking wasn't telling them how i was feeling.
At the time i didn't know we could get the actual results, so didn't ask , but i wasn't told anything was abnormal.
It was years later when i got my old results , and the comment on this one said " ! abnormal , contact patient ! " but the Doctor had not done so.
Maybe i was not contacted because he looked at fT4 (and fT3! lucky me) and saw they were normal for me, so ignored the 'one off' TSH as an anomaly .
Tagging diogenes in case this example is of interest.
well, I still have whatever is left of my thyroid gland.. no removals, radiation etc... but it is next to nothing..shrivelled up and reduced. I'd have to look up what my last thyroid ultrasound says. BTW is people are not believed that they are hypothryoid, the thyroid ultrasound shows how it is!
Your TSH and free thryoid hormone levels are as expected..pity you did go back on for those 2 days to I'd reckon you would have reached a TSH of over 10 and low fT4 ..ie below range in that test.Unlike what I have read here TSH does respond fairly fast..It should very over the day but at least it will change within a few days. I could always tell fairly accurately what people's dose should be based on a test after 2 weeks or so..based on the graph. Yes the TSH graph DOES asymptotic up to a steady level by around 6 weeks (all else being equal and with no antibodies changing and interfering !)..but anyone who can read a graph knows the curve to expect and can tell what is happening with a TSH and blood levels after a couple of weeks! Endos and GP's are told it takes 6 weeks to stabilize (ie reach that asymptotic level which is the rise or drop flattens out). This flattening out is mathematically based on the half-life for T4 in our bodies and the excretion rate and absorption rate etc...but for someone who is concerned about going hyper (especially) or hypo with a dose change or antibody flare for some reason I think it would be far safer to test at two weeks!
BTW my last endo (who I also think is not that thatbgood!) is greatly esteemed and looked up to in his field! ..but he would have resulted in my death if I had listened to him back over ten years ago about not drinking as much water!! (another story that I NOW understand the reasons for )... I showed him those results and told him how I was feeling much better now my antibodies were suppressed..he said the problem was not that I was going from hypo to hyper and feeling like it ..but that I was testing too often!..obviously testing before the levels asymptoted (levelled out). I did change my dose to aim for around a TSH of 1.1 (my ideal) and fT4 above 16.5 (ideal 16.5 to 19.5)..and fT3 above 4 too!..depending on when meds taken and test time, in day..even depending on whether you have eaten recently or exercised when you have a partly functioning thyroid).
I had a TSH which refused to rise to a level which would get me diagnosed as hypothyroid initially (over ten years in my mid to late twenties and thirties). I got diagnosed around age 40 but still had a TSH of around 3 to 4.6 and normal range fT4..around 13 to 16.
I wanted someone to treat the antibodies as this made sense to me..but it was not the done thing..I was not lucky enough to find a immunologist..I have just found one this year!!! He would have treated the antibodies and I would still have a great thyroid gland and be healthy!! probably a good brain and liver too and not blocked arteries!!) If you do have high TPO antibodies (mine were about 2400 in 2002) and high TG antibodies..try to get these fixed up with an immunologist..they are starting to exist these days!! If you any high doses of autoantibodies you really should try to look for an immunologist who may be able to prevent further organ damage. You will likely still need some thyroid meds..depending on how soon you can stop those antibodies.(if at all possible..But I think it's worth a try!) I started on thyroid hormones as I was up to crawling into a doctors office I was so tired and I hoped it would give me some relief, but for years it was struggle and i did need some time released in some form of T3 (natural pigs thyroid in methocell) or a slow release T3 s well as the T4 to feel in any way more normal.
When on any steroids (cortisol, prednisolone etc) I seem to be able to process the T4 and as they say ..use it. The science says the steroids get rid of the T3.. but it has always felt to me like I could use the T3 and break the T4 into T3 and use it!! (maybe that is how it is eliminated?)..so after Nov 16 I have only needed to take T4 so far but as I reduce the steroids ..we'll see!. I do think the argument of natural thyroid hormones being harmful in that they may cause more autoimmunity may be possible and something to consider when one does take natural thyroid hormone (or Armour or similar) compared to a timed release T3 with T4 together.(and I used to be a strong supporter of nature thyroid hormones)
i've just looked up 'asymptotic' which at first i thought was a typo for 'asymptomatic' lol.
As my diagnosis was never questioned, i put the 2 days Levo back in on purpose so bloods would show i'd been taking levo. so yes i'm fairly sure TSH would have been higher without the 2 day's levo, but i'm not certain if it would have had time to go down in about 30 hrs from'1st dose' to test being done ? will never know unless i do it again. but i'm not keen to do that nowaday's.
By the way , can you be sure it's the steroids responsible for the antibodies ?..... i had TPOab consistently at >3000 at diagnosis, but 13 yrs later they were 'only' 195, without doing anything to try and reduce them. ...i've just assumed less thyroid left = less antibodies.
TSH changes in hours at least to some extent, so it would have had time to go down a little at least. TSH is diurnal (within a day) and highest early in the morning..so if one wants a higher TSH to satisfy some test for a doc, test as soon as the lab opens in the early morning is best. medscape.com/viewarticle/45...
I did this for decades and it always worked for me.. I got "hyper" results when tests sprung on me in the afternoon after I had taken my meds (especially if T3 or natural thyroid hormone which I took at least twice a day If I didn't time release)and after eating lunch..
As expected I was told to reduce meds after these tests. Higher test TSH results around 7AM -7.30 when pathology collection centres opened and fasting..though differences would not be more than in TSH values 0.5 for me (ie not a huge amount of difference maybe reading would vary from a TSH of 0.3 and a TSH of 0.6 or a TSH of 1.8 and a TSH of 2.6 etc.
"By the way, can you be sure it's the steroids responsible for the antibodies ?..... I had TPOab consistently at >3000 at diagnosis, but 13 yrs later they were 'only' 195, without doing anything to try and reduce them. ... I've just assumed less thyroid left = less antibodies"
Thanks for reminding me..Yes, you are right, the same happened to me in reducing those TPO and TG antibodies, and yet when I have taken steroids on occasion with my thyroid meds (and now for 5 years continually..not something recommended due to other bad effects on body ..like BMD but lots of other stuff!) my thyroid type symptoms seem to stabilise and feel evened out.. not yoyoing up and down and feeling hyper and hypo anymore..and the antibodies feel like they have almost gone too. It's strange but every part of my body is healing..like my chest, and breathing and sore knees have healed ..my thyroid (I was hoping would gro back.. but looks like it may be too late for that!) I am currently blaming antibodies for my blockage in the MCA in my brain and moyamoya like vessels and brain blood flow artery disappearing as well.. but that's a big unknown!
When I first went on thyroid hormones my TPO and TG antibody levels did decrease as I read they would(like yours)..and I thought that was the treatment so didn't keep looking for other treatments as they seemed to be lowering...as you say it's probably the fact that the thyroid gland has reduced to almost nothing in size , hence less tissue to attack! I am still not sure what is going on with me and my brain function is not as good now so I find it difficult to remember things..which isn't any help at all! Sorry.
I was mainly trying to point out that TSH can move way faster than the time Gps and endos seem to say it takes..that 6 weeks is the time to finally stabilize (all else remaining the same..including antibodies!)
Oh the answers to my questions have just appeared , it was just the image showing when i wrote them.
I agree with your thinking ..that it is the sudden sustained drop in all hormones that makes TSH move fast.
I often see results on here that show low TSH taking ages to move , or barely moving at all . but i think that is usually because the dose was reduced rather than totally stopped.
It just seems logical to me that TSH would be more likely to respond quickly to a sudden sharp change in fT4/3 levels , rather than a more subtle reduction, which will take weeks to have any impact on TSH , if it even did at all.
I expect it's different for hyperthyroidism patients , who've had totally supressed TSH/very high fT4/3 for ages before treatment , i can see why TSH might take months to move for them .... i'm just thinking of hypo's when settled on treatment here .
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the answers to my questions have just appeared , it was just the image showing when i wrote them.
Mathematicians needed to interpret TSH rise!
