Can Dr stop levothyroxine...I take T3 self medicating

[Madge72]

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

[Hidden]

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 Hidden]

Because I take T3

[Hidden in reply to Madge72]

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 Hidden]

That's what I thought

[greygoose in reply to Madge72]

More like punishing you for going over his head and userping his authority!

[Madge72 in reply to greygoose]

Can you please help me with my resultsThank you

Good

[Jaydee1507 Administrator in reply to Madge72]

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?

[greygoose in reply to Madge72]

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.

[Madge72 in reply to greygoose]

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

[greygoose in reply to Madge72]

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.

[Madge72 in reply to greygoose]

T3 50% MORNING 25% 2PM 25%10PMBLOOD DRAW 7AM..I HAVE JUST CHANGED

DOCTORS

Thank you

[Madge72 in reply to greygoose]

Can you please help me with my resultsI had a triple bypass 6weeks ago

Thank you

Black and white

[greygoose in reply to Madge72]

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.

[Madge72 in reply to greygoose]

I took last levo 7am day beforeT3 50% 7am .25 at 2pm....... .25 at 9pm day before

Draw blood 7am following day

[greygoose in reply to Madge72]

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?

[Madge72 in reply to greygoose]

I am at a standstill I need to lose weightI am always passing water

I feel I need to adjust

Myhair is a mess

[greygoose in reply to Madge72]

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.

[Madge72 in reply to greygoose]

What about T3....I am on 25mgI am on 100mg levo in 1 tabletDo I drop 25mg every other day

[greygoose in reply to Madge72]

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.

[Madge72 in reply to greygoose]

Thank you

[helvella Administrator Thyroid UK in reply to Madge72]

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!)

[Madge72 in reply to greygoose]

I didn't add I had a triple bypass 6 weeks agoThank you

[Hidden in reply to Madge72]

Can you self source your own Levo? It’s not too expensive - and you can then tell him to ‘go away’.

[Madge72 in reply to Hidden]

Yes

[PurpleNails Administrator]

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.

[Madge72 in reply to PurpleNails]

No my TSH is to high

[PurpleNails Administrator in reply to Madge72]

With high TSH they should know replacement hormone needs increasing. Find another doctor.

[Madge72 in reply to PurpleNails]

It's the endo who agrees I don't have a chance

[PurpleNails Administrator in reply to Madge72]

Who is treating you? Endo or GP?

[Madge72 in reply to PurpleNails]

I saw endo 2yrs ago he didn't want to knowNow Dr wont prescribe

[SlowDragon Administrator in reply to Madge72]

Looking at recent posts…..Your TSH is suppressed ….not high

[Madge72 in reply to SlowDragon]

I know that...pity the Dr doesnt

[SlowDragon Administrator in reply to Madge72]

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

[humanbean]

I don't know the answer to your question, but it sounds like medical/health blackmail to me.

[Madge72 in reply to humanbean]

Exactly

[SlowDragon Administrator]

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

[Madge72 in reply to SlowDragon]

Can you please help me with my resultsThank you

Ggod

[Madge72]

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

[SlowDragon Administrator in reply to Madge72]

Many thousands of U.K. patients are getting T3 prescribed on NHS

openprescribing.net/analyse...

And at least the same number prescribed privately

[AKatieD in reply to SlowDragon]

Looks like Hsmpshire is the place to live!

[Brightness14 in reply to AKatieD]

I moved from Hampshire back in 2014. The health system if better where I live now, France.

[SlowDragon Administrator]

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

[Madge72 in reply to SlowDragon]

Yes I have

[SlowDragon Administrator in reply to Madge72]

Which brand levothyroxine are you taking

What dose …..100mcg….or 87.5mcg?

[Madge72 in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Madge72]

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

[Madge72 in reply to SlowDragon]

I am taking 25 at the moment...will have a test in 6 weeks

[SlowDragon Administrator in reply to Madge72]

So day before test …..cut T3 tablet in 3

Half tablet waking, 1/4 tablet mid-afternoon and 1/4 tablet at 9pm

[Madge72 in reply to SlowDragon]

Yes I do that.....thank you so much

[Madge72 in reply to SlowDragon]

Can you please help me with my resultsThankyou

Good

[RedApple Administrator in reply to Madge72]

Madge72, It would be better if you started a new post to ask for help with these new results.

[SlowDragon Administrator in reply to Madge72]

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

[Madge72 in reply to SlowDragon]

What about T3...it looks high..I don't follow

Thyroxine 4 days a week 75 mg I thought daily

[SlowDragon Administrator in reply to Madge72]

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

[Madge72 in reply to SlowDragon]

Is this daily...I have not heard of 4days aweek?Thanks

[SlowDragon Administrator in reply to Madge72]

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

[Madge72 in reply to SlowDragon]

Thank you so much...it makes sense when you explain it...I would never thought of this

[SlowDragon Administrator in reply to Madge72]

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 ….

[Madge72 in reply to SlowDragon]

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

[Madge72 in reply to SlowDragon]

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

[SlowDragon Administrator in reply to Madge72]

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

[shaws Administrator]

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.

[Madge72 in reply to shaws]

Thank you

[humanbean]

This thread may help give you some ammunition with doctors in connection with T3 :

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

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

healthunlocked.com/thyroidu...

[radd]

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.

[Madge72 in reply to radd]

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

[radd in reply to Madge72]

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.

[Madge72 in reply to radd]

I have no trouble getting T3 and I will now buy T4Thank you