Hi everyone, I hope you're well. Thank you for all your compassionate responses to my last post - as always, I really appreciate everything you all have to say to me, even if I don't always respond beyond giving comments a 'heart'. I've had a strange update on my thyroid stuff since writing that post, so I thought it'd make more sense to write a new one to get anyone who's interested up to speed...
Yesterday, I received a rather confused/panicked call from the registrar while I was out for a walk in town. He called to inform me that, to both of our surprise, instead of having bloods showing that I was heavily over-replaced on so much thyroid hormone (levo 150, T3 10 for a month, before I became fed up with feeling hypo and started taking the full 20mcg pill daily instead...) rather, my bloods showed that I am more hypo than I've ever been since the thyroidectomy. I'm not sure if I heard him correctly, but apparently my TSH is at a whopping 27 (I hope I heard that wrong), while both my T3 and T4 readings are close to the bottom of the range (I don't remember specific figures, but will soon find out once his letter comes in the post. I think T3 is higher than T4 for once, though).
He initially suggested that it must be the T3 that did this, so I have to come off it immediately. I told him that I respectfully can't see how that would be the case? I haven't noticed that I'm hypo at all - I sleep well, I can stay awake all day, my weight (while a couple kilos higher than I'd like) is somewhat stable...granted I don't feel "great", but I am better at least, so how? Besides, I really don't want to go back to how I felt on T4 only right before I start my Masters degree. I reminded him that I have relatively recently been on antibiotics for my gut (remember when I said that he totally ignored me when I told him about my gut issues and subsequent treatment on Monday?). He calmed down a bit and started acting as though he'd known that all along, and like he was the one who made the suggestion that the antibiotics could have screwed with my absorption (despite him rudely and categorically stating that my absorption is fine when I brought it up 🙄)
Not like I already told him all of this on Monday and he was too arrogant to listen...If anything, I think it might have been the addition of the T3 that saved me - if I hadn't been on it I'd probably be in a much worse place now, but the fact that it's the pure active hormone may possibly have kept me from being as symptomatic as I would otherwise have been with these abysmal levels.
Regardless, he still wants me off the T3 as a "control measure" and will check back with me in 2 months. This doesn't make any sense to me - if he wanted a control, surely he wouldn't want to change anything so he can compare my bloods from being recently off of antibiotics versus being completely off them to determine if they were the cause? But of course, we all know the real reason why he wants me off of the T3 and I'm sure his boss is very pleased...My plan is to begrudgingly do what he says so that no one can say I didn't try, but the second I get any kind of hypo symptoms, I'll demand the T3 back. I can't keep having endos treat me like a lab rat while I'm just trying to get on with my life.
A sidenote too - I wonder if maybe I have some kind of issue with thyroid-related medication in general? This is probably where I'll sound a bit stupid...but even when I had a thyroid, I struggled to go into remission on very high doses of carbimazole - I think I was taking up to 70mg daily at one point. Now, my body hardly reacts to very high doses of T4 and T3. Could there be a connection there?
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lau99
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Hi Meanbean x I'm not really sure, to be honest...he didn't say anthing about tapering off the T3, and pretty much just instructed me to go cold turkey. I have enough that I could just ignore his instructions for a while, but I may have to call back the hospital so I can be more assertive about keeping the T3 or involve my GP. I'm not sure I can really afford to see my private endo right now...maybe I'll see if I can get a letter out of him to show to the registrar?
Sorry to hear this.One thing I would say is that 150 levo and 20 lio are not high doses of thyroid hormones. I would view that as pretty standard. A normal thyroid produces around 100mcg t4 and 7mcg t3. Factor in that our bodies no longer work as efficiently then we need slightly higher levels to compensate.
You shouldn't come off lio in one go. That would be a shock to the system. It needs to be tapered off in 5 MCG steps over a couple of months.
Have you thought of getting a private blood test to see what is happening now or to see if that sample was compromised in some way. Just so you know and may be useful for any future discussion.
I see...that is a very good point. I'll possibly get in touch with my GP for some more bloods to be drawn in the meantime but I may also just get a medichecks as you've suggested.
Well, I was going to resurrect the question about trialling liquid T4 again because of the continued gut issues :
and now we have this crazy suggestion ?
The TSH has little significance when you haven't a thyroid gland:
The Hypothalamus/Pituitary/ Thyroid feedback loop doesn't work as the " T" - your thyroid - has fallen out of the equation and now not there, where it used to be.
Your HPT axis is broken, and can't be relied upon for reliable readings and you dose, monitor and measure on T3 and T4 blood test results.
I have read that those of us with Graves are able to function well on much higher levels of T3 / T4 and this is presumed to be because of the much higher levels of thyroid hormones tolerated throughout the first phase of the disease.
Around 3 years after my RAI thyroid ablation - with no reason and no dose changes in T4 my TSH shot up to mid teens - my doctor panicked and increased my T4 - and my TSH dropped back down to it's usual setting of 0.01 after a month or so.
My doctor was really confused by me as I was totally unaware of this high TSH as it had no bearing on my symptoms.
Once I was back down with a TSH at 0.01 we started again on the silly game of trying to keep the TSH in the range which meant another dose adjustment down in T4 and so the see sawing of upping and downing, mostly keeping my dose of T4 down started again, whilst I became more unwell.
P.S, I've just looked back at the very limited results I have been given of my blood tests results from this period: and see 4 episodes throughout 2008 - 2011 where my TSH hit between 8 - 15 - with just one test for T4 which came in 2011 with a TSH of 8.40 and a T4 at 15 :
Thank you as always for your explanations and anecdotes, Penny. I've suggested Liquid T4 numerous times and been shot down at each instance because I 'clearly don't need it'. The endo that I was supposed to see instead of this registrar even gave an example of one of her patients who 'actually' needs it, to further demonstrate that I don't. I'm pretty stumped on how to get my T3 back...I just can't see how reducing one's thyroid medication is supposed to make them less hypo.
Apparently a summary of my consultation on Monday and Wednesday's phone call is due to arrive to me in the post in a few days. I do remember what was said, it's just that the more I think about it, the less sense it even makes. The only common thread in each of his consultations has been, "get off the T3", with some dodgy reasoning and flowery language wrapped around it to make me agree to do it. I think that's his only mission, and my passivity helped him achieve it.
OMG......all this shows is that he hasnt a flippin clue about thyroid and medication. Id run for the hills if it were me and see someone else. He is dangerous and will cause you harm. Get rid!
Bottom range of T4/T3 and high TSH indicate under treatment. ......so stopping the T3 is daft and clearly a panic reaction by him!!
Perhaps you're right. It's so disheartening and angering to keep being thrown about to different endos because no one wants to even deal with me. This man is not my doctor, yet my real doctor has assigned her subordinate to my care because...well I don't even know why. I've had this happen so many times, or endos just flat out refusing to see me. For the love of god, why do all of these doctors forget to treat us like people...? I'm not some human experiment - they only have to listen to us for 15 mins every few months while we endure every single day.
As far as I'm concerned, this is a problem that they created by forcing me into a thyroidectomy in the first place. Now, no one wants to even acknowledge the mess they made.
I am so so sorry to hear what has happened to you. Its disgraceful what they have done to you! In all honesty given whats happened you need to take charge of the situation by en-skilling yourself - read up all you can post on here test results, ranges what you are taking and how you are feeling on here......there are a lot of clever people on here who can help and will.
If you have test results for B12, folate, vit D & ferritin that would be useful to know.
Take heart there's support on this site. You are not alone.
Oh Lau, you're really going through the wringer here
That's a spectacularly high TSH for someone taking lio which usually represses it ... I'd be really wary about losing your lio so if it were me, (a) I'd double-check I wasn't taking anything with biotin in, which might distort the result; (b) I'd ask for another test just to make sure the last one was right before changing anything; and (c) I'd say that I want it in writing that my lio will be restored if this "experiment" doesn't work or I feel seriously ill at any time after stopping it ....
I really hope things get better for you, but I can't see that this is the way forward myself xx
Hi fuchsia, thank you for your kindness as usual. If the antibiotics are the cause for this, it must have been an oversight by my private endo who prescribed them...I don't really blame him for doing so (especially as it's only speculation, it could also have been the antifungal), since my SIBO reading was really high and I don't believe either drug had thyroid meds listed as possible interactions. Not sure how I'll do it, but I think I've come to my senses now and will try to get the T3 back somehow.
Please dont do as he says. It makes no sense at all to reduce your meds when your tsh has gone up. Ask for a retest in a week to check the results weren’t wrong then make a sensible plan from there - which could include asking to see a different doc, asking for a referral to an Endo or going down the self medication route. Post your new results for comment. Don’t make yourself unwell because the doc is clueless!
Thank you for this wake up call. I really try not to be so passive, but being only 22 I think doctors look down on me even more a lot of the time, and I hate being misjudged as rude or bratty when I'm trying to stand up for myself. None of that matters more than my health though, so I'll definitely kick up a fuss about this.
Yes I know I’m 55 and I’ve really given up being a push over! Mainly because docs simply have no idea of the impact of what they’re saying so you have to point it out to them. So I use phrases like ‘i really need your support to help me understand what’s going on and how I can get better… I don’t want to go online and self source meds I’d much prefer to have the support of my doctor… before that recent increase, I was so poorly it was affecting my work and relationships… I could barely walk and the pain so bad I couldn’t sleep … etc! I just pile it on. In your case that big leap in tsh needs looking at not ignoring it for two months and that doc is really failing you.
For most of us were limited in our options with GPs so simply imploring them to help is about all we can do … before switching surgeries or private testing or self sourcing.
It took me until I was 40 to take control of my health and not look to the doctors any more. I'd suffered with my thryoid since a teenager but was constantly fobbed off by doctors. I wish I had trusted in myself in earlier years and fought harder, but it is So hard when younger and also exhausted.
Is there any way you can take someone with you next time? Your mum? or even better an adult MAN (for some strange reason we're treated less like hysterical silly little girls when we are accompanied with a bit of testosterone)
But saying you've had second thoughts sounds a plan. Good luck - and a big hug from the south coast xx
Thank you, fuchsia x Sadly I tend to go to these appointments alone because I study quite a way away from home for most of the year, so all of my appointments happen here rather than in London where I'm originally from. Everyone I know here is around my age, or they aren't well versed in anything medical/thyroid related and would probably agree that I should just listen to the doctor...I can't think of anyone who I could take along to make these easier, it's such a shame...
There was a cartoon someone once here referred to about taking someone along. Wish I could remember where that was. Maybe a cardboard lifesize cut-out of a man would help the doctor take you seriously 😂 was the cartoon of a cut-out man I wonder, it was years ago?! Xx
I totally agree with JAmanda!! I keep seeing this time and time again with doctors suddenly pulling medication and it's the patient that suffers. They make us wait 3 months unmedicated for a retest when our thyroid first goes out of range because "a virus may have temporarily altered the test readings", so why not bounce this idea back at the doctor? Stay on the current dosage, wait a little, retest and see what happens, given you feel ok. Otherwise if it's something else that triggered this, then you come off your meds, and then retest later, and the results are back ok, then the doctor will think "Aha! I was right, it was the T3 meds!" So he'll get a false positive on his theory. Then T3 will never be allowed again! But if you wait a few months or something and stay on your meds as you are, then retest and your results go back to normal. Then his stupid theory is disproved and you get to keep the meds.
What gets me is that if you were trying to get T4, they have months of tests done to make sure the figures are ‘right’ but then want to reduce meds from 1 test that shows any changes. They are so contradictory
I highly doubt he does. He comes across as very arrogant with comparatively little knowledge, and is a terrible listener - if he didn't hear half the things I told him the first time, I doubt I'd know what to do with me either. There's no way he'd apologise, either. He'd just pretend that he knew all along what would happen. I definitely don't want to ditch the T3, and will try and get it back before I run out. This "experiment" is ridiculous...
A friend of mine, who had her thyroid out, took many years to find what worked for her, during that time she was on Levo and adding T3- her TSH had gone as high as 60 and even 100.Happily she has now,after being left in the wilderness like you and working on it herself, found the right solution for her-she splits T3 and takes her 50 Levo at night and 20mcg of T3. SHe can work full time and feels like she is finally getting her life and health back. I am just sharing this with you in case it helps to know -she was on higher Levo doses when she had v high TSH readings up to 100 at one point.
Sympathy and Strength for you. Essentially we are our own lab rats. Some of us just can Not be dosed by lab results. Lab results are just a snapshot of the moment that the labs where done. Cellular results are what *Ultimately* counts. Because *Cellular* results are the most telling. Please don't walk but run to another Dr that will be open mined out of the *Box* and will treat you the way you ought to be treated. *Optimally*. You owe it to yourself. Trust your *Gut* feelings . They serve you well.
Once you are on the right level of medication you would actively be questioning these decisions first hand with the person making them, knowing they were talking " tosh " ;
And likely when you are well, these tactics wouldn't be being used anyway.
You are a young woman, needing medical help and trusting and respectful of the medical establishment - I identify so much with you, though I am at the other end of the age scale.
I spent too long trusting the medical profession and now feel disappointed and disillusioned.
No one deserves to be treated this way, especially when ill and vulnerable through medical ignorance and neglect.
The bloods in question that show I'm hypo were done on Monday, 13th September, while my last vaccine was on the 12th August, I think....so basically a month apart. Symptom-wise I feel pretty good in comparison to how I've felt historically post-thyroidectomy (not totally asymptomatic), and I didn't notice any difference after either vaccine.
Interesting - I never felt any different when my TSH shot up into the mid teens :
Did me a favour though - I got a dose increase : which is logical and what should happen if TSH obsessed : according to everyone except your registrar :
but you should be dosed and monitored on your T3 and T4 and dosed to have them both high enough in the range to relieve your symptoms.
So, you could throw a Covid vaccination into this registrar's email as a potential reason why your TSH " spiked " and not to panic.
I don't think they know enough to either rule it in or out of " odd looking " blood test results and this might allow you a rematch and retest of bloods :
Lau, Just a suggestion, but as you can't take someone with you to a consultation, could you record it on your phone? You can say that you want to refer back to his points later. He will be much more careful with his comments and manners knowing they are on record.
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Updated blood test results - sorry!
update to graves disease
Seeing endo unexpectedly and have private blood test on the way!!!
Thyroxine induced Osteo- Endo update 2
Giving levo another go...
