Over dosed levothyroxine: Have been without a... - Thyroid UK

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Over dosed levothyroxine

Duchesse profile image
12 Replies

Have been without a thyroid since 1993 and felt fine on my meds of 150mg/day but have during that time had heart problems, primarily AF which has required hospitalisation for a day or 2 on several occassions , the last time being 5/6 weeks ago. Blood tests showed that my readingswere off the scale and Cardiologist locum says i have been wrongly medicated for the last 10/12 years. All meds stopped but my doc has started to find out level of levothyroxine best suits me. next bloods due in 3 weeks, but i am on 100mg/day plus some heart meds. Iam concerned about interaction between the drugs and find it hard to believe that specialists for so many years are entirely wrong ! At present I feel very fatigued and hopefully the reassessment regime will put me back to good health. I have to trust my doctor and await blood results, unless anyone has a better idea

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Duchesse
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PurpleNails profile image
PurpleNailsAdministrator

When over medicated you usually have hyper type symptoms & TSH is very low or supressed (<0.01) and FT4 & FT3 are over range.

What are your thyroid function results? Often the TSH appears low but FT4 & FT3 are not actually over range.  

So very important doctors are testing & focusing on the full picture & not assuming over medicated based on TSH.

Dropping 50mcg suddenly unless very over range will cause more issues then helps.

Do you have access or copies are blood test results with lab range?

pennyannie profile image
pennyannie

Hello Duchess and welcome to the forum :

Without seeing any blood tests results or ranges and knowing nothing about your medical history or why your had a thyroidectomy can I just say :

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin +a measure of T3 at around 10 mcg + a measure of T4 at and 100 mcg.

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and we generally feel at our best when our T4 is in the top quadrant of its range as this should in theory covert to a good level of T3.

Your own ability to convert T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, antibodies and any physiological stress ( emotional or physical ) depression, dieting, and ageing will all impact and down regulate T4 /T3 conversion.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Some people can get by on T4 Levothyroxine only :

Some people find that T4 seems to loose some effectiveness after a period of time and find that by adding in a little T3 - Liothyronine - probably at a similar dose that that which was lost when the thyroid was surgically removed - restores their health and well being :

Some people can't tolerate T4 at all and need to take T3 only :

Whilst others find their health improved better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid, dried and ground down into tablets referred to as grains.

Currently you need a referral to an endocrinologist to as assessed for treatment with either NDT or T3 - Liothyronine due in the most part to financial restraints from CCG/ICB health boards so these 2 treatment options maybe refused due to cost rather than medical need.

Of course there are options and if you can afford to go private all treatment options are available and now with a benefits of the internet some forum members are forced to self source and medicate in order to get back to better thyroid health.

20 odd years ago all these 3 thyroid hormone treatment options were available through your primary care doctor to prescribe as you both thought fit when T4 - Levothyroxine did not fully restore fully your health and well being.

You can read further around all things thyroid on the Thyroid UK website - who are the charity who support this forum - thyroiduk.org - where you will also read about the withdrawal of T3 prescriptions from primary care and the work Thyroid uk have and are undertaking to have this vital thyroid hormone reinstated in primary care.

Thyroid UK also hold a list of recommended sympathetic endos and thyroid specialist both NHS and private created from recommendations from this patient to patient forum - and I think admin can email or send this out to anyone looking for the name of someone they might like to consider being referred to. We can't mention names on the open forum - though we do have a facility for forum members to talk privately, on a one to one basis through the " Chat " icon above - looks like a paper plane.

tattybogle profile image
tattybogle

Hi Duchesse .

You may, or may not, have been over medicated for years .

Some medics will say that when they see a series of lowish TSH results in a patients history , and say 'ah ha ~she's been overmedicated '.... especially if that patient has AF, which can sometimes be associated with prolonged high thyroid hormone levels (T4 /T3) , but AF can also happen to anyone .

But a low TSH does not necessarily show overmedication . Whether you were really overmedicated or not depends on whether they were also able to see any fT4 / and fT3 results in your history to get the full picture of your previous levels of thyroid medication.

You do now need to wait until you get the results from your upcoming blood tests on 100mcg Levo , (you need to be on a stable dose for at least 6 weeks to test thyroid hormone levels after you have changed dose) . So for now , try and relax and see what your result say when you get tested .

In the meantime get hold of a printout's of your thyroid blood results , ( the numbers and lab ranges , not just the 'comment') from the GP receptionist.

~from the dose of Levo you were on before it was lowered.

~and if possible the ones from when you were in hospital and they said 'off the scale' .

~and, when they come in , your new results from being on 100mcg .

post them here like this :

TSH ~ result [range]

fT4 ~ result [range]

fT3 ~ result [range]

And members will then be able to help you understand what has been going on.

As to 'drug interaction'.... what else are you taking as well as levo ?, and at what times ?

people will be able to advise if you add that info in a reply here :)

Duchesse profile image
Duchesse in reply totattybogle

Many thanks for your input.

I will endeavour to get a print out, although i may have to arm wrestle the receptionist. I have just in recent years just been told 'its within range' or not as maybe.

Original thyroid situation was when I lived in France and automatically I was given a full print out of all blood test which enabled me to see the difference life style had effect (ie too much food/alcohol at christmas - which i have avoided this year). I will definitely want to see the actual results this time and will keep posted following next bloods

meme profile image
meme in reply toDuchesse

Are you in the U.K. now? If so, you can see your results on the NHS app. If not, take a note book to all appointments and ask for the results from the computer screen.

What heart meds are you on? Most of them will make you feel tired and you might need to try a different one.

Sleepman profile image
Sleepman in reply tomeme

My surgery is not fully online yet, I have to fill in a medical records form and wait a few days. Then chase and go in to pick up a photo copy. Good luck

TSH110 profile image
TSH110 in reply toSleepman

I just say I want a copy for my records and the receptionist prints it out for me. It is illegal for them to refuse.

tattybogle profile image
tattybogle in reply toDuchesse

just apply your " calm, smile, reasonable~ but i'm not going away" face before you go in .

you have a legal right to see your actual results as long as a GP has already seen them first . some receptionists may get flustered if they are not sure of these rules and will want to check in case they get into trouble .. so expect to have to come back another day once they have 'asked the Doctor' , or suchlike. If so just say "that's fine i'll comeback to collect them in a day or so" .

But usually a extremely confident sounding "Hi, please could you do me print off of my thyroid function results from 'X' date " will do the trick straight away .

You want:

TSH ~(Thyroid Stimulating Hormone) and [lab range] eg 0.18 [0.4-5.2]

fT4 ~(free T4 /thyroxine) and [lab range] eg 17 [12-22] may / may not have been done.

fT3 ~( free T3) and [lab range] .. unlikely to have been done, but if it has it's really useful to know what it was .

Brightness14 profile image
Brightness14 in reply toDuchesse

When you had your thyroid removed was it because of cancer. If so here in France your TSH would have been suppressed with a letter from your French surgeon to that effect.

PurpleNails profile image
PurpleNailsAdministrator

Setting up online access to digital record is best method for view records and useful as includes notes, letters & referrals.  

Practices in England are contractually mandated to provide other areas vary.  

You initially get a basic coded access, access to requesting prescriptions possibly making appointments but practice has to arrange access to medical record.  

You need to request records including historic record.  They have a calendar month to set up.  

Tests arranged by hospital may not automatically included.  but hospital are usually set up to supply records & you can submit a request. 

 I keep a copy of result & screen shots of results as occasionally people say records get altered or go missing although this is not supposed to happen.

  In meantime - Request printed copies, which will include lab ranges.  Don’t accept verbal, hand written (even typed / emailed) too much room for error & they often don’t include range (perhaps deliberately).

  Sometimes staff want to confirm you can view results & “check with doctor” - but it’s usually apparent If the results have be read & filed on system but it’s often simplest to telephone reception in advance, ask for results - & then say I collect in 2 working days.  This gives then time to “check” & print & hopefully prevents the need for arm wrestling.

Hedgeree profile image
Hedgeree in reply toPurpleNails

Hi PurpleNails,

Patient Access can be very useful. But I know some forum users have found they have limited access to it (myself included)

My access is reduced and whenever I have written politely to gp and the Practice manager it gets reduced even more. Then I have to ask to get my limited access reinstated.

When I was querying their under treatment of my possible thyroid condition access to thyroid blood test results both current and historical were blocked.

It does state on my Patient Access that the surgery can restrict what you can see. So I echo what you say to get screen shots of any information incase access gets reduced (or information mysteriously disappears!)

I'm not able to view notes, letters or any referrals so will try again to get more access allowed. I've had some success at clinics when they've copied me in and I got sent letters that way but it's never continuous. Very frustrating.

Eliotf profile image
Eliotf

you might have to add t3 while keeping your t4 low. My tag & t4 levels were fine. My t3 was a bit low and I felt like shit by the afternoon. We added 5mcg of t3 and boy I felt like a new person. To explain: your body might not be converting your t4 to t3. There are about 6 different tests for thyroid disorders have them all run, not just the & t4

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