Overmedicated results - told to start again - Thyroid UK

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Overmedicated results - told to start again

Karla9 profile image
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Hi I am new, I have been told I have overmedicated results on Levothyroxine 175mcg and have been told by endo to start all over again by reducing me right down to 25mcg and retest 6-8 weeks time. Symptoms are dry skin, feeling cold, fatigue, eyes feeling heavy and sore, hair loss, weight gain, bone pains in legs, carpal tunnel, heavy menstrual cycles. Thankyou for reading, diagnosed 2010 with hypothyroid.

NOV-2017

TSH *0.02 (0.2 - 4.2)

FREE T4 21.3 (12.0 - 22.0)

FREE T3 4.0 (3.10 - 6.80)

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Karla9
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21 Replies
SeasideSusie profile image
SeasideSusieRemembering

Karla9

We see this constantly here on the forum and I am certain your case is exactly the same as all the others.

Nope, not overmedicated. Your FT4 and FT3 are within range, in fact your FT3 is very low, so no way are you overmedicated. Your endo has seen your suppressed TSH and is panicking. However, TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

Changes in dose should only be done 25mcg at a time, reducing from 175mcg to 25mcg is going to make you very unwell and I suggest you don't do it.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. See thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Available on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.

My "diagnosis" is that you have an endo who is a diabetes specialist and hasn't really got much of a clue how to treat hypothyroidism.

I think you may have raised antibodies which confirm autoimmune thyoiditis aka Hashimoto's - have you been tested?

Have you had vitamins and minerals tested - Vit D, B12, Folate, Ferritin? All very important and part of the full picture for us Hypos. If tested, please post results and say if you are supplementing and what dose.

Karla9 profile image
Karla9 in reply to SeasideSusie

I am B12 and iron and folate and vit D deficient, told by GP to wait until next year to be tested and treated

Marz profile image
Marz in reply to Karla9

You should not have to wait until next year for treatment. Do you have the results with ranges for the B12 - Folate - Ferritin & VitD ?

Karla9 profile image
Karla9 in reply to SeasideSusie

TPO antibody 504.3 (<34)

TG antibody >1500 (<115)

SeasideSusie profile image
SeasideSusieRemembering in reply to Karla9

Karla

Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and it appears this has happened to you. I don't understand why you've been told to wait for testing and treatment, it just doesn't make any sense at all.

Howevever, nutrient levels need to be optimal for thyroid hormone to be able to work properly, so you need to address the malabsorption for any supplements to be able to be absorbed. Check SlowDragon 's reply to this post which has links and information that will help healthunlocked.com/thyroidu...

Clutter profile image
Clutter

Welcome to the forum, Karla9.

TSH 0.02 is suppressed but that does not mean you are overmedicated as your FT4 and FT3 are within range. FT3 is actually low in range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your endo or GP.

Please tell me you saw a trainee and that your endocrinologist was not a consultant? The advice is abysmal. You should not start again if you are overmedicated. If you were overmedicated the correct thing would be to reduce dose. Thyroid hormone dose adjustments should be in 25mcg increments every 6 weeks. It is totally wrong to make swingeing adjustments which will compromise your health and your ability to conduct a normal life and may compromise your ability to work.

If your GP is supportive discuss the endo's suggestion and ask GP to get a second opinion from a consultant endocrinologist. If your GP isn't helpful write to the head of endocrinology and ask him/her to review the endocrinologist's advice or contact the hospital PALS for assistance.

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee Box 1. Lists possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

Ask your GP to check ferritin, vitamin D, B12 and folate which are commonly low/deficient in hypothyroid patients and symptoms may be similar to hypothyroid symptoms.

Karla9 profile image
Karla9 in reply to Clutter

Thankyou I was not overmedicated but endo said low TSH said I was. Previous endo was ok about below range TSH. Consultant was not a trainee

Clutter profile image
Clutter in reply to Karla9

Karla9,

Sheesh! Find out who the head of dept is and make a formal complaint. A consultant should know better than to "start again".

Karla9 profile image
Karla9 in reply to Clutter

I am B12 and iron and folate and vit D deficient, told by GP to wait until next year to be tested and treated

SeasideSusie profile image
SeasideSusieRemembering in reply to Karla9

Karla

When were you told you were deficient in all of these? Why the wait, why not start investigations and treatment now?

spongecat profile image
spongecat in reply to SeasideSusie

Could be a reason why Karla9 is not converting to T3 so well. Dragging heels over this is just ludicrous and unkind to the patient who is missing out on the chance of getting some wellness back.

These endos...tsk. Don't they ever do some clinical progression updates learning? :(

Karla9 profile image
Karla9 in reply to SeasideSusie

GP can't fit me in for medication review and bloods and levels when last tested in Feb 2017 showed multiple deficiencies

Clutter profile image
Clutter in reply to Karla9

Karla9,

How do you know you are deficient if you have to wait until next year to be tested?

Karla9 profile image
Karla9 in reply to Clutter

Because I take B12 injections and iron tablets and vit D tablets and I was deficient then

Karla9 profile image
Karla9 in reply to Clutter

Because of these results

Ferritin 22 (30 - 400)

Folate 2.0 (2.5 - 19.5)

Vitamin B12 96 (190 - 900)

Vitamin D total 19.3 (<25 severe)

Clutter profile image
Clutter in reply to Karla9

Karla9,

You should contact the practice manager and complain that you have severe deficiencies shown in blood tests in February and June 2017 but your GP is not treating you and is refusing to see you until January.

You are at risk of serious neurological damage which may not reversible if you don't get B12 injections. Testing should be done to establish whether B12 deficiency is caused by pernicious anaemia in which case you will need injections every 3 months for life. Symptoms of B12 deficiency are listed in b12deficiency.info/signs-an... healthunlocked.com/pasoc are the experts on PA, B12 and folate deficiency if you want further advice.

5mg folic acid to correct folate deficiency should not be initiated until 48 hours after B12 injection is given.

Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is only to be used as a maintenance dose once vitD is >75nmol/L. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

Ferritin is deficient and this may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. If you are prescribed iron it should be taken 4 hours away from Levothyroxine.

Karla9 profile image
Karla9

Ran out of my supplements 4 months ago any ideas please?

Marz profile image
Marz in reply to Karla9

You need to know your results NOW - and receive treatment NOW. Your results are worryingly LOW . When were those last tests done ?

Karla9 profile image
Karla9 in reply to Marz

June 2017

SlowDragon profile image
SlowDragonAdministrator

You are going to have to take control and be more assertive.

Why have you not organised more supplements

B12 deficiency is a serious issue and can cause irreversible damage, when was last injection

make an urgent "on the day" appointment to get all these deficiencies reviewed and dealt with

How much vitamin D were you prescribed originally? Was it a loading dose and then reduced to just 800iu. This is highly likely to be inadequate

Ferritin is so low you need full iron panel test and then likely an iron infusion

You could ask for testing for coeliac to be considered, but the vast majority with Hashimoto's are gluten intolerant not coeliac

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

You are not overmedicated as free T4 is in range and free T3 is low in range. Do not do this, you will be very ill, you actually need T3 added to levo as you are not converting well - or you need to improve supporting vitamins and minerals. Where do they get these idiots from?

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