My Dr has stopped my Levothyroxine becauseI self medicate with T3....is this normal or can I do anything about it.l am in the UK
Can Dr stop levothyroxine...I take T3 self medi... - Thyroid UK
Can Dr stop levothyroxine...I take T3 self medicating
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Madge72
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Did he stop your levothyroxine because your TSH is too low or because you take T3? Either way, he does not sound like a good doctor. Doctors who know anything about thyroid disease and treatment are hard to find, no matter which country you´re in. Have you considered self-sourcing levo as well?
Madge72• in reply to
Because I take T3
• in reply toMadge72
I would personally never set foot in his office again. What he is doing is punishing you for trying to get better.
Madge72• in reply to
That's what I thought
More like punishing you for going over his head and userping his authority!
Can you please help me with my resultsThank you
Good
Madge72 do start a new post so that more members can see and comment on your results.
When did you take your last dose of Levo & T3 before this test? Usual recommended timing to see stable blood levels would be 24hrs for Levo & 8-12hrs for T3.
How much Levo & T3 are you taking currently? Both FT4 & FT3 are above range which indicate over replacement.
What were your latest results for ferritin, folate, B12 & D3?
What supplements are you taking?
OK, a couple of questions first:
- as Jaydee asked, how long was the gap between your last doses of levo and T3, and the blood draw?
- Do you have Hashi's?
- and, were these results with taking both levo and T3? Or on levo only?
Your TSH is suppressed, as would be expected when taking T3. But both your FT4 and FT3 are much to high, over-range. This could be explained by a) taking too much of each, although it's unusual to have an FT4 that high when taking T3, b) taking thyroid hormone too close to the blood draw, or c) having a Hashi's 'hyper' swing.
My vitamins are good I don't have hashisI got all mixed up when the Dr stopped my Levothyroxine without warning...I am only
Just recovering....I take Levothyroxine day before and T3 50% in morning 25% 2pm 25%10pm
I now have to buy Levothyroxine as well as T3
I AM ON 100mg levo 25mg T3
Thank you for your help
So, how long are we talking about? A 24 hour gap between your last dose of levo and the blood draw? And how long for the T3?
Your doctor is behaving very unprofessionally. If I were you, I'd send a formal complaint to the practice manager.
T3 50% MORNING 25% 2PM 25%10PMBLOOD DRAW 7AM..I HAVE JUST CHANGED
DOCTORS
Thank you
Can you please help me with my resultsI had a triple bypass 6weeks ago
Thank you
Black and white
Well, it rather looks as if you're over-medicated on both T4 and T3. But it does depend how long that gap was between last doses and blood draw.
If you left a gap of 24 hours between your last dose of levo and the blood draw, and between 8 to 12 hours for the T3, then you are over-medicated. If you took them on the day of the test then your results are meaningless.
I took last levo 7am day beforeT3 50% 7am .25 at 2pm....... .25 at 9pm day before
Draw blood 7am following day
OK, so the timing is all good. And you say you don't have Hashi's. So it does rather look as if you're slightly over-medicated. But how do you feel on that dose?
I am at a standstill I need to lose weightI am always passing water
I feel I need to adjust
Myhair is a mess
OK, well, maybe start by reducing your levo by 12.5 mcg a day, and see what happens? It's not good to have such a high FT4 long-term. Retest after six weeks.
What about T3....I am on 25mgI am on 100mg levo in 1 tabletDo I drop 25mg every other day
Keep the T3 as it is for the time being. You should only change one thing at a time. And your FT3 could very well drop if the FT4 level goes down. Dropping 25 mcg every other day should be fine, yes. 
Thank you
Madge72,
It is perfectly acceptable for you to add to this post - there is no bar to posting on older posts/threads.
But one problem is that many members will simply not notice that you have had a major event and in some ways are asking a new question.
For that reason, it might be a good idea to write a new post. By all means refer back to this post/thread. I suspect more members will notice and be likely to reply.
(Not in any way suggesting greygoose isn't answering just fine!)
Hello greygoose can you help me again with my testI take 100mg+75mg Levothyrine and 18.75mg T3
Colour
They all look good - apart from your ferritin, and that is bad! Much too low. You really ought to see your doctor about that because you need a full iron panel to see what's going on.
The lab says I need attention on my levothyroxine as it is still to high
Do they really mean your FT4 is too high? Or do they mean your TSH is too low! If they're just going by the TSH, ignore them.
But how do you feel on this dose? Do you feel you need to reduce your levo further?
Madge72,
You haven't done anything wrong, but when I saw an alert and came to this thread/post, I couldn't see what was new!
Having today's results and questions added to an old post which already had over sixty replies make it difficult to follow. (Alerts don't always take us to the actual reply that they should do. That is an ongoing technical issue.)
I suggest that it would be easier all round for you to start a brand new post. Of course, it is fine to refer back to this post/thread.
PurpleNailsAdministrator
Did your doctor keep reducing your levo because your TSH was low?
Doctors tend to focus on TSH but have they looked at your FT4 & FT3 & discussed with you what the right dose is for you.
I would guess no, because most GPs would freak at low TSH and would not understand why someone takes T3 by themselves as an endocrinologist has to treat someone who clinically needs T3.
No my TSH is to high
With high TSH they should know replacement hormone needs increasing. Find another doctor.
It's the endo who agrees I don't have a chance
Who is treating you? Endo or GP?
I saw endo 2yrs ago he didn't want to knowNow Dr wont prescribe
Looking at recent posts…..Your TSH is suppressed ….not high
I know that...pity the Dr doesnt
Well Dr presumably does know TSH is suppressed as that’s most likely reason he doesn’t want to prescribe levothyroxine
Man6 medics mistakenly think anyone with suppressed TSH is over medicated
But almost everyone on any dose of T3 will have suppressed TSH
Most important results are always Ft3 followed by Ft4……and all four vitamins at optimal levels
I don't know the answer to your question, but it sounds like medical/health blackmail to me.
SlowDragonAdministrator
can you change gp within the same surgery
Or change surgery
how soon are you going to run out of levothyroxine
Which brand do you use
What dose
How much T3
Can you afford to see thyroid specialist privately
List of thyroid specialists and endocrinologists
healthunlocked.com/thyroidu...
What are your most recent thyroid and vitamin results
It's the endo who's the problem.they won't test me because I take T3..>I have looked on internet and can get some in 3weeks I may have enough till thenI am ok with T3 and I get checked with medichecks
Thank you for your help
Many thousands of U.K. patients are getting T3 prescribed on NHS
openprescribing.net/analyse...
And at least the same number prescribed privately
Looks like Hsmpshire is the place to live!
I moved from Hampshire back in 2014. The health system if better where I live now, France.
SlowDragonAdministrator
So last post here with results
healthunlocked.com/thyroidu...
shows you were probably taking slightly too much T3 ….and not enough Levo
Have you reduced T3 by 1/4 tablet per day
Yes I have
Which brand levothyroxine are you taking
What dose …..100mcg….or 87.5mcg?
I am taking mercury pharma.just gone on 100mg this week...These are my recent results I had Monday.....would I be ok on 125mg in a few weeksI have dropped my T3 to 25mg.....cynol
FT3 *4.88 pg/ml 1.4-3.5pg/ml
FT4 0.94 ng/ dL 0.70- 1.48ng/dL
TSH *<0.01 uUl/mL 0.35 -4.94uUl/mL
You need to wait 6 weeks on 100mcg levothyroxine
Then retest via Medichecks
Make sure last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test …..
How much T3 are you now taking?
25mcg plus 1/4 tablet?
Normally…..Are you cutting 25mcg in half and taking 3 doses per day.
Day before test …1/2 tablet waking, 1/2 tablet mid afternoon and last 1/4 tablet 8-12 hours before test
I am taking 25 at the moment...will have a test in 6 weeks
So day before test …..cut T3 tablet in 3
Half tablet waking, 1/4 tablet mid-afternoon and 1/4 tablet at 9pm
Yes I do that.....thank you so much
Can you please help me with my resultsThankyou
Good
Madge72, It would be better if you started a new post to ask for help with these new results.
Assuming you tested correctly
Last dose levothyroxine 24 hours before test
Last dose T3 8-12 hours before test
You’re on too high a dose
Currently taking 100mcg levothyroxine daily?
Suggest you reduce levothyroxine to 75mcg (or by 25mcg) 4 days a week
Retest in 6-8 weeks
What about T3...it looks high..I don't follow
Thyroxine 4 days a week 75 mg I thought daily
It’s incredibly difficult to tolerate reducing dose
Has to be done slowly and carefully
You can’t change Levo and T3
Only change one at a time
Reducing levothyroxine will also reduce Ft3 result
Wait 6-8 weeks….retest
Is this daily...I have not heard of 4days aweek?Thanks
Lots of people have to fine tune dose
So yes …you could try reducing by 25mcg per day ….but that’s
A) likely too much
B) would be difficult to tolerate reduction
Ideally would take 87.5mcg daily…..but if only got 100mcg tablets that’s difficult (reducing by 12.5mcg per day)
So reducing by 25mcg on 4 days per week is a drop of 100mcg PER WEEK
Get a weekly pill dispenser
Monday take 75mcg
Cut a 100mcg into a half and 2 x 1/4 ‘s …..put spare 1/4 in Wednesday
Tuesdays take 100mcg
Wednesday take 75mcg
cut a tablet in half and 1/4 …..and put spare 1/2 in Friday
Thursday take 100mcg
Friday take 75mcg
Cut a half and 2 x 1/4
Put spare 3/4 in Sunday
Saturday take 100mcg
Sunday 75mcg - spare from earlier in week
After 6 weeks retest
Thank you so much...it makes sense when you explain it...I would never thought of this
I take 125mcg 4 days and 112.5mcg 3 days week as single dose at bedtime
plus 4 x 5mcg T3 - 6.30am, 11.30am, 5.30pm and 11pm
Plus strictly gluten, dairy and soya free
Only taken 30 years to work out ….
Wow...do you have an endo..I am gluten freeJust changed my Dr she
ruined me stopped my levo without saying
I was on holiday and really
I'll so just trying to get right...thanks again
Wow...do you have an endo..I am gluten freeJust changed my Dr she
ruined me stopped my levo without saying
I was on holiday and really
I'll so just trying to get right...thanks again
Yes I have an endo…..but only recovered after joining this forum in 2012…….saw all the shared knowledge, help and got full full private testing
More on my profile
shawsAdministrator
I think your GP is afraid that it may be assumed that he's prescribed T3 for you. He will be worried if you have any 'side effects'.
I wouldn't worry too much because I had horrible experience on levothyroxine and it gave me awful palpitations, worse during the night. The Cardiologist in the local hosptal that I was linked to couldn't figure out why this was happening
I am now prescribed T3 (liothyronine) alone and it suits my body and resolved any unpleasant symptoms. I feel I have 'normal' health regarding thyroid hormones.
I am happy when I take my early a.m. dose of T3 with one glass of water and I wait an hour before I have breakfast. I feel well and have no symptoms. I also have energy.
If I am going to have a blood test for thyroid hormones, I take my early a.m. dose after blood is drawn.
I believe a number of GPs do not understand how T3 works as the majority seem to have been informed that only T4 (levothyroxine) should be prescribed.
This thread may help give you some ammunition with doctors in connection with T3 :
SlowDragonAdministrator
if you see an endocrinologist on this list who does Private and NHS
See them privately now as you urgently need new prescription for levothyroxine (Mercury Pharma) ….and transfer to NHS in few months
List of thyroid specialists and endocrinologists
Madge72,
Your situation is appalling but one seen previously many times on the forum.
My Levo was unknowingly removed from my repeat prescription list several years ago when I was self-medicating WP Thyroid. When this NDT was discontinued I switched to Armour which I found ‘T3-potent’ necessitating the addition of Levo to balance to T4:T3 ratio, but my GP surgery wouldn’t prescribe as refused to believe I had been self medicating and said I couldn’t need Levo if I hadn’t been prescribed it for several years 🙄.
I had to buy Levo from online sources whilst I presented my case that included scans showing a shrivelled thyroid gland evidencing my need for total thyroid hormone replacement and invoices for my online NDT purchases. They scratched their heads but eventually reinstated my Levothyroxine prescription.
So my situation was a little different to yours but I feel your frustration and fear. You are being played off by an endo whose given you T3 but a GP who hasn't a clue how to interpret blood results and thinks your low TSH means you don't need Levo.
Whilst you are sorting all this out (if it ever gets sorted out) you can buy Levothyroxine from online sources and members will offer info on credible sites, and it is not expensive like T3 or NDT are.
Hello...no I am self medicating with T3 it's the endo who is the problem...thanks ...you know what I feel like and I am glad you got yours sorted
Madge72,
Oh sorry, your post title says ‘doctor’ so I’m assumed your GP.
In that case if you’re self medicating T3 already and also need T4, why don’t you just self medicate T4 as well? If you can afford it, it offers great piece of mind.
If you are trying to get T3 on the NHS, it really is a postcode lottery. I got my T3 prescribed and withdrawn twice! The fight was exhausting and then the stress enormous of never knowing if your meds are going to be available.
If your NHS endo isn’t on board it might be better to seek T3 from a private endo. At least this way you are more likely to keep your NHS Levo prescription.
My results could be yours except high ferritin because a haemochromatosis carrier.
I still haven’t told Drs outright I’ve added T3, although did casually mention to passing locum.
They wanted to take away some T4 because TSH 0.005 but flatly refused to accept it. Black mark on my records but so be it. Like you, can’t hold heart problems over me as I have a pacemaker and av node ablation.
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