Not sure if my question got lost before! Anyway just wondered if anyone has had similar advice from an Endocrinologist. After my appointment yesterday, I was expecting they may recommend giving T3 and reducing my Levothyroxine accordingly. However, she wants me to reduce the Levothyroxine by 25micrograms each month, then stop it completely! I had always been told that once you start you have to stay on it for life. Now it seems they are suggesting you may be able to get your thyroid working on its own again. I am terrified that this experiment will make me feel worse than I already do, I have put on 8kg in weight recently and certainly don't want to put on more which I assume will happen?
Any thoughts would be most welcomed. x
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Dobby
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Well she says because my TSH shows I am overmedicating, she wonders if at the very start of me taking thyroxine, I may have been borderline so did I needed it or not she asked? She seems to think I could to better without it! 🤷♀️
Based on your May results, your endo should not be taking you off thyroid medication. The TSH reading does not corelate with the actual thyroid hormone numbers. Your TF4 was low, and FT3 below range, which already indicates that your thyroid is unable to produce what you need. Therefore coming off thyroid hormone (or even lowering dose) would probably be disasterous.
But perhaps your most recent results show a different picture, so do post those details when you have them. 😊
Hi thank you so much for your note. I have left a message for the Endo's secretary to email the results, as soon I receive them I will post them..... Thank you x
I know you've probably had all the answers you need, but I just thought I'd mention.... my GP (who was himself hypothyroid) started me on levo because I was borderline - and I had tested positive for antibodies, so he said I was only going to get worse. That was many years ago and I have been increased since then as needed.
Dobby Initially you may feel great. I did. It took 3 months for me to become very hypo. The weight you will gain is mostly fluid. Hopefully it will become evident very soon that you need levo. I got down to 25mcg per day which is when I became ill with TSH at 32, ft4 bottom of range and ft3 under range. If you do reduce please make sure you monitor your levels and symptoms carefully.
Oh gosh thank you. Do you think your thyroid just won't function on its own? I am terrified she is using me as a guinea-pig. She did say if I don't feel better after 6 months, then she may introduce T3 and T4 again!
My thyroid was killed off with RAI treatment so I had know idea how much it would produce on its own.I would monitor my bloods privately if I were you if she is going to leave you 6 months.
Really appreciate your note and for sending the link to your story. It really is worrying how many people are suffering, often the endo's are just following the guidelines rather than how we are feeling. So pleased you are feeling more like your old self now x
Metavive II daily. (This has been for about 6 months)
Jan 2020
TSH 0.02 (0.27-4.20)
Free T4 18.3 (10.80-25.50)
Free T3 4.7 (3.10-6.80)
Feb2021
TSH 0.02 (0.27-4.20)
Free T4 21.9 (10.80-25.50)
Free T3 6.2 (3.10-6.80)
May 2022
TSH 0.01 (0.35-4.94)
Free T4 11.0 (7.5-21.1)
Free T3 3.3 (3.8-6.0)
Were tests done early morning, last dose levothyroxine 24 hours before test and day before test did you split Metavive into 2 or 3 smaller doses spread through the day and last dose 8-12 hours before test
Previous post shows you are currently taking levothyroxine and Metavive
So obviously you will have suppressed TSH
Last test is dramatically different
What changed
Very Low Ft4 and low Ft3
Does endocrinologist think you are only taking levothyroxine?
ESSENTIAL To test vitamin D, folate, ferritin and B12
Have you ever had thyroid antibodies tested?
Strongly recommend getting full thyroid and vitamin testing done via Medichecks or Blue horizon
List of private testing options and money off codes
Hi Yes test was done around 9.30am and I didn't have any meds at least 24hours prior to test. I used to take 50 micrograms thyroxine around 6.30am and two Metavive II around 12.00pm.
I tried to tell her I had what I was taking but not sure she was listening, sadly I think she was showing off in front of a medical student!
I don't recall ever having antibodies tested. Menopausal brain fog isn't helping! 🤣
Never take iodine when on levothyroxine/replacement thyroid hormones
Iodine use to be used to treat hyperthyroid patients. Iodine can make hypothyroidism much worse
Levothyroxine contains all the iodine you need
(unless possibly a long term vegan ……even then ….if tested and found deficient….endocrinologist unlikely to recommend iodine supplements)
Always stop taking any supplements that contain biotin a week before ALL blood tests
Biotin is used in many lab test machines
Iron
Stop taking any iron supplements a week before testing ferritin levels. Do any ferritin test early morning and fasting and don’t eat iron rich dinner night before test
Look this endocrinologist up, highly likely a diabetic specialist ….
Write her a short polite letter as follow up to consultation
Pointing out you were not allowed to voice you opinions or concerns at yesterdays consultation.
As the patient, who has lived with this debilitating disease for years/decades…..you do know how YOUR body responds. That after previous experiences you will not be reducing/stopping levothyroxine
I have never seen this lady before, sadly she was like a steam train and just didn't want to have a conversation. Sadly I seem to have 'white coat syndrome' Doesn't matter how old I get, I seem to feel like a five year old and don't answer back, stupid I know! 🤦♀️
She shouldn’t speak to you like that—it’s completely unprofessional. If a work colleague spoke to you like that it would be called bullying. We’re supposed to be partners in care—it’s our bodies we’re talking about, not theirs!
Sending a hug cos you really shouldn’t have been left in this position. x
She is not suggesting your thyroid could have got better ... She is trying to officially confirm if it was ever damaged in the first place. If it's not damaged (ie by autoimmune disease) then it will work again once levo is stopped , but maybe not well enough to give you enough T4/T3 .... and it will take time for TSH to respond and settle down , before you really know how much T4/T3 it will be able to produce .
The problem is your original NHS diagnosis from 11 yrs ago was just not very clear , because your original un-medicated results were only 'borderline' (as NHS would see it.. most here would say you were clearly hypo ) ,. the TSH was 4. something ,and fT4 was about 11. something ~ it's not clear from original post if that fT4 was under range or not)
They only reluctantly agreed to gave you 25mcgdue to 'borderline' bloods , but when they did , your TSH went straight down to to 0.something , so they didn't want to give more.
So you then went private / then self sourced NDT / then got NHS levo again at 125mcg for a while .. then they started insisting on reducing Levo dose to 125/100 alternate due to TSH being 0.02 .. ignoring the fact that your fT4/fT3 was in range.
Your latest couple of 'weird' results that led to the endo referral were a bit suspect , because you'd been trying 50mcg levo + some metavive ....and there was also a period of taking lugols iodine in there somewhere.. so those sets of results don't really tell anybody anything useful. .
Basically this history is making the endo question if you ever needed thyroid hormone in the first place.
The endo may possibly have to jump through this hoop of 'confirm original diagnosis' before they are allowed to prescribe T3 on the NHS . depending on what the local CCG's policy/ pressure is.
Have you ever had thyroid auto-antibodies tested by NHS ?
TPOab (Thyroid Peroxidase antibodies) ... or TGab (Thyroglubulin antibodies)
If these are/ were over range it would be evidence that the cause of your hypothyroidism was autoimmune, which would make it much easier to prove you would have needed thyroid replacement therapy at some point anyway , even if you were onlt subclinical / borderline 11 yrs ago.
Presumably she is intending to retest bloods after each 25mcg reduction ? .... or is she saying she'll only test bloods once you've been off Levo completely for several weeks ?
i think we all know that there is a pretty big risk that this ' experiment to confirm diagnosis' is likely to make you very unwell for many months , just to provide the 'evidence' that your TSH will rise and your FT4 will be low without levo.
It may be a risk you are prepared to take in order to try to get T3 prescribed on the NHS.. but it's a big risk..... you may become very unwell and barely able to function for months ... even when / if they do restart levo (+ T3 if you're lucky) it could take many more months to get back to where you were before you stopped levo .
Starting and stopping thyroid hormones like this is a very drastic thing to do to someone's HPT axis.
It could take a long time to get thyroid to wake up and produce 'however much' T4/T3 it is able to as the levo is gradually withdrawn.
And if as you suspect , your thyroid still can't make enough, (just like it couldn't 11yrs ago) , if you're unlucky, it could still take a rather long time for your TSH to rise enough to convince them to restart Levo .
You may be 'lucky' .. your TSH may now go over range very quickly and quickly convince them you are genuinely hypothyroid...... but it may not ..... it may still be just 'bordeline'... there's no way to know what will happen unless you are prepared to try it.
But , honestly .. i'd be very scared of the potential consequences of what is being proposed.... even if i didn't have a job, or something that i was worried i'd loose during the experiment...i'd still be very worried about the loss of overall fitness/ wellbeing that could happen during this time, and what a very long road it could be to get that back again after i'd been so unfit/ unwell that i was stuck on the sofa for a few months.
In theory , without any levo,... your TSH will rise again and will (eventually) stimulate your thyroid to go back to making however much T4 /T3 as it can by itself.,, and if this isn't enough T4/T3 for you then your TSH will stay highish and your fT4 will stay lowish .
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