Sudden reduction of meds without weaning.

[Mejouk]

Hi, just wondering if anyone's GP has told them to reduce their medication Levothyroxine from 200mcgs to 75mcg without weaning them down ?

[helvella Administrator Thyroid UK]

Such a drastic reduction seems wrong to me.

If 200 is so much more than you need, it leads to the question of why you were on that dose?

I cannot believe that anyone could come to the conclusion that 75 is what you need. Someone might have used a formula to produce an estimate, but all formulas are at best guesses.

Imagine you might need 125. Dropping you from 200 to 75 then leaving you on that dose for a few weeks would result in a big under-dosing. And that is plain wrong.

It would help if you could add some background as to how you arrived at this point. Maybe add information to your profile?

healthunlocked.com/user/Mejouk

[Mejouk in reply to helvella]

The reason its such a drop in meds is because the doctor that sent the letter got the amount that I'm taking wrong. I'm on 200mcg she is saying I'm on 100mcg. The receptionist even confirmed I'm on 200mcg but the oncall doctor vie the receptionist is saying yes should basically do as I'm told and reduce my meds by this much even though I've pointed out that there has been a mistake.

[SlowDragon Administrator in reply to Mejouk]

Put it in writing and send copies addressed to the Dr concerned and the practice manager

Point out the error

That GP has misread the dose you are currently on as 100mcg ……when actually you are on 200mcg

Obviously you need to get hold of most recent thyroid test results and ranges

Never agree to dose a reduction based just on TSH

Perhaps Include in letter

Who originally prescribed you 200mcg, especially if it was endocrinologist

How long you have been on 200mcg

That before considering reducing dose levothyroxine you will need full thyroid (TSH, Ft4 and Ft3 ) testing

(Plus thyroid antibodies if not been tested before)

Essential to test vitamin D, folate, ferritin and B12 BEFORE considering reducing dose

Therefore can GP please give you a test form for full thyroid and vitamin testing, and an early morning appointment

Or you will arrange your own testing privately

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

[diogenes Remembering in reply to Mejouk]

If you are on 200 ug T4, a sudden precipitous drop to 75 is positively dangerous. The body isn't like a car that you can accelerate or brake as hard as you like, without having profound implications for health. If a drop is warranted at all, it should be no more than 25ug steps with plenty of time between them to find out what effect this has on your health. The 200/100 misunderstanding should be clarified and the approach to lower dose altered as above.

[shaws Administrator in reply to diogenes]

Where do we find sensible doctors who have a 'basic learning' about 'how to diagnose/treat hypo patients'?

[SeasideSusie Remembering]

Mejouk

That's ridiculous. Why does your GP want to reduce your dose?

Have you got your test results? If not ring and ask the receptionist (not the doctor) for a print out of your results if your surgery doesn't offer online access. In the UK we are legally entitled to our test results without charge or question. Post results with ranges (ranges are important as they vary from lab to lab). Let's see if we can find out why such a massive reduction?

For accurate results it's important to follow this protocol for testing:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Is this how you did your test?

If your GP is only adjusting dose by TSH that is wrong. Full testing of TSH, FT4 and FT3 is needed but rarely done, and only if FT3 is over range are you overmedicated.

Do you have autoimmune thyroid disease, known to patients as Hashimoto's? This is confirmed by a positive thyroid antibody test or ultrasound.

[Mejouk in reply to SeasideSusie]

Hi SeasideSusie, Thank you for all the information you have given me. I didn't know any of this at all regarding the best way prepare for a thyroid blood test. Because of hairloss I have actually been taking Biotin to help improve my hair growth and had no clue to stop taking them a week before Because it can impact the results. I will be trying all this when I next take a blood test.

[SlowDragon Administrator in reply to Mejouk]

Include in letter to GP and practice manager

the test is invalid anyway as you were taking a high dose biotin supplement and didn’t know to stop this a week before blood test.

High dose biotin can falsely affect test results

yorkhospitals.nhs.uk/seecms...

Biotin (vitamin B7) doses of greater than 5mg may interfere with the Roche-manufactured immunoassay tests employed within Clinical Biochemistry at York Teaching Hospital NHS Foundation Trust and cause results that are inconsistent with the clinical picture. The interference may be positive or negative depending on assay design.

Dose of greater than 5mg are only generally used in over-the-counter supplements marketed for hair, skin and nails (typically 5 – 10mg) and in therapeutic high dose biotin regimes for the treatment of multiple sclerosis (normally >10mg).

[Mejouk in reply to SlowDragon]

Hi slowDragon,

I have since had a phone call with my GP where she apologised because she did indeed get my dosage wrong. In this call I mentioned I would like to take a 3rd test because I've since found out that it might be invalid because of my use of biotin she kind of sounded put out by my request for a 3rd test. She made a comment that its something she had never heard of but because she had sent a form for a retest in 3 months she reluctantly agread that I can retest with this form when I want. I also explained the symptoms my body goes through when I need a increase in meds but obviously that was taken no notice of. I know I've had some great advice to get a vitamin blood test but I don't think my GPS will agree to this.

Thank you all for your help x

[Mejouk]

Hi thank you for your replys. So basically I received this latter from my GP after my recent blood test. The problem is I'm not on 100mcg I'm on 200mcg. So I've phoned the GPS to tell them it's wrong and that if I go by this its a drop by125mcg in meds and the oncall doctor vie the receptionist sent a massage back that he is standing by the 1st doctor and I should reduce meds by this 125mcg amount because they have medical evidence. I've never in all my years taking medication been told to reduce this much from one day to next without weaning.

Gp latter

[SlowDragon Administrator in reply to Mejouk]

Strongly recommend getting FULL thyroid and vitamin testing done NOW before considering any dose reduction

At most dose should only be reduced by 25mcg ….and only then if Ft3 is over range

Was last test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

You are legally entitled to copies of your test results

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

NEVER agree to dose reduction with just TSH tested

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Meanwhile

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

[Mejouk in reply to SlowDragon]

Thank you for all your help and information I'm going try and take more control regarding my illness rather then leave it to my GP to tell me whats best for me. I don't think I've ever had a vitamin test other than one for iron. So will request one and see if that helps plus I will try to get hold of my results to see what they are testing me for.

[SlowDragon Administrator in reply to Mejouk]

Hair loss frequently linked to low ferritin levels

Extremely common to have low vitamin levels when hypothyroid

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies

Low vitamin levels are especially likely with Hashimoto’s

Come back with new post once you get full thyroid and vitamin testing results

[Buddy195 Administrator]

I’m experiencing difficulty reducing my slightly over range T4 by 12.5mcg currently, so I cannot comprehend how you could be asked to reduce by such a significant amount, even if there has been a mistake. I would write to the practice outlining your concerns. If you do need to decrease, I would suggest reducing in increments of 25mcg, but if you are anything like me, it may be half that amount. Go at you pace and keep posting to let us know how you are getting on

[Mejouk]

So the 1st doctor has phoned and said she made a mistake reducing my medication from 200mcgs to 75mcg it was ment to be reduce by 25mcg which is what I thought. She also apologised that she had made a mistake which I totally understand. It was the fact that the 2nd doctor stood by her mistake that got my back up and that I need to look after my own health because they showed they will back each other up over my heath. I have also requested a new blood test which I will be following advice I've been given by the kind people on this forum. I will also get access to my online test results so hopefully someone on here can help me understand what's happening with my bloods

Thank you all for your help and support x

[SlowDragon Administrator in reply to Mejouk]

Would recommend thyroid test is repeated and vitamin D, folate, ferritin and B12 tested before reducing by 25mcg

A) taking biotin leads to false result

Important to stop this week before all thyroid tests

B) hairloss linked to low ferritin

C) test early morning, ideally before 9am and last dose levothyroxine 24 hours before test