Thyroid UK
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Stopping Levothyroxine

I am new and my GP has asked me to stop my Levothyroxine 50mcg due to symptoms of overmedication - tremor, insomnia, tremor, weight loss, headaches, pain behind eyes but I still have symptoms of hypothyroidism like constipation, feeling cold, hair loss, puffy eyes and ankles, carpal tunnel, sudden stopping of periods, weight gain, tiredness. Is my GP right to ask me to do this? Diagnosed 2011, been through so many dose changes. Haven't yet found the one that helps me feel 100% well. Thanks in advance

TSH 8.3 (0.2 - 4.2)

Free T4 10.2 (12 - 22)

Free T3 3.0 (3.1 - 6.8)

23 Replies
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Terise1986,

Just a few points:

For me, insomnia (falling asleep, then waking after a short time, unable to fall back to sleep), was a symptom prior to diagnosis and before adequate levothyroxine dose.

For me, pain behind eyes has been a symptom of inadequate levothyroxine.

It seems unlikely that, if you need ANY thyroid hormone medication, 50 micrograms would take you into being over-medicated. But you then list a series of fairly classic hypothyroid symptoms.

Have you got your actual test results (including reference ranges)?

Have you had iron tested (e.g. ferritin)? Or vitamin B12? Or vitamin D? Or a full blood count?

Your doctor could be good, bad or indifferent - not yet 100% clear. But it comes across rather as "I can't prescribe the right dose so I'll not prescribe anything." Which is not a helpful approach. And could so very easily look like blaming the patient for not getting better.

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TSH 8.3 (0.2 - 4.2)

Free T4 10.2 (12 - 22)

Free T3 3.0 (3.1 - 6.8)

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You are definitely hypothyroid with those results. You need levothyroxine and you need a dose increase not a reduction. You have some serious vitamin deficiencies too and it is likely that your thyroid and vitamin deficiencies combined are giving you symptoms, you are definitely not over medicated with those results. Taking you off your medication is negligent imho.

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Terise,

You are experiencing both hypothyroid and low vitamin/mineral symptoms.

When I presented to my GP with similar - I was told it was 'anxiety', luckily I found this site & took advice.

You need an INCREASE in medication due to above range TSH & below range T4/T3 indicated by your blood tests (let alone symptoms) & a referral to someone who has a clue - a haematologist etc.

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Ferritin 12 (30 - 400)

Folate 2.6 (4.6 - 18.7)

Vitamin B12 155 (180 - 900)

Vitamin D total 18.3 (<25 severe vitamin D deficiency)

RBC count 4.41 (3.80 - 5.80)

WBC count 7.12 (4.00 - 11.00)

MCV 78.5 (80 - 98)

MCHC 389 (310 - 360)

MCH 28.2 (28 - 32)

Haemoglobin estimation 114 (115 - 150)

Platelets 230 (150 - 400)

Haematocrit 0.41 (0.37 - 0.47)

Neutrophils 0.3 (0.0 - 1.0)

Monocytes 0.5 (0.2 - 0.8)

Basophils 0.0 (0.0 - 0.2)

Eosinophils 0.2 (0.0 - 0.2)

Lymphocytes 1.4 (0.0 - 2.0)

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You should be on B12 injections - and should have been tested for pernicous anaemia before being given folic acid. You should be taking 3 of those ferrous fumarate a day with at least 500mg of vit C each time to aid absorbtion, [plus you should be on loading doses of vitamin D. 800iu is a maintenance dose for a child with adequate levels already. See if you can see another GP with more of a clue.

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Taking 800iu D3, 210mg ferrous fumarate and 5mg folic acid

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Please pop over to the Pernicious Anaemia Society forum and post those results. You should be on loading doses of B12 by injection.

800 IU of vitamin D is negligently low.

Your doctor is out of his depth and his ongoing lack of appropriate treatment is having a severe impact on you.

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Link to the Pernicious Anaemia Society forum:

healthunlocked.com/pasoc

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Please click onto SeasideSusie and read her MANY excellent replies to members with results similar to yours.

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Hi Terise, This video will be helpful in understanding the different treatments doctors prescribe -

healthunlocked.com/thyroidu...

Magill69

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If those are your current readings then you are hypothyroid and need replacement. As a GP this makes me very sad.

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I too am fairly new to this forum. For me, low level Free T3 has resulted in experiencing symptoms of hypothyroidism whilst my TSH has remained persistently high, resulting in some symptoms of hyperthyroidism. This has been my issue for the past 20 years. Due to recent prescribing changes my GP will no longer test T3, clinging instead to the cheaper Levothyroxine (T4) prescription route. Persistence of low T3 once attracted Liothyronine (T3). That is until the manufacturer increased it’s selling price to the NHS by 5000%. Which brings me to ask is there a deficiency of knowledge amongst medical practitioners where evidence of low T3 is concerned? Another confusing issue here, for me at least, is that in 2011 my thyroid was surgically removed. Therefore there are two distinct groups of individuals experiencing thyroid issues but from different starting points.

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Make an urgent appointment today with a different GP

You need 25mcg dose increase in Levo. Retesting after 6-8 weeks

Plus correct treatment for terrible vitamin results

Ask for full testing for coeliac disease. This will likely make them consider your vitamin deficiencies more seriously

Here's a reply from SeasideSusie to similar dire results

healthunlocked.com/thyroidu...

I am guessing that you have Hashimoto's also called autoimmune thyroid disease. Diagnosed by high thyroid antibodies

With Hashimoto's, until it's under control, (TSH around one and FT4 towards top of range) our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins.

Low vitamin levels stop thyroid hormones 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...

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Thanks yes I have high antibodies, is this Hashimotos?

TPO antibodies 710.5 (<34)

TG antibodies 365.3 (<115)

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Yes it's same thing.

Read as much as possible about Hashimoto's

Always get actual results and ranges on all blood tests

Keep good records of how you feel along side results

You will have to educate your GP

Improving vitamins, increase in Levothyroxine and strictly gluten free diet will all help improve symptoms

Good link about insomnia and low vitamin D

drgominak.com/sleep/vitamin...

Dose of Levo should be increased in 25mcg steps, tested each time after 6-8 weeks until TSH is around one and FT4 towards top of range

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

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Why are so many GPs so ignorant about thyroid issues. It's disgraceful.

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And about guidelines on vitamin and mineral deficiences

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In my experience it is the Levo causing those symptoms

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Your throid cannot function properly without b12 or iron and you are deficient in both.

Consider an h pylori test. H pylori is a common bug that gets in the stomach and reduces stomach acid causing malabsorbtion of nutrients. Just increasing iron and getting b12 injections will relieved symptoms of those deficiencies but leave the h pylori still in the gut. Gut health is super important to numerous functions in the body. I was b12 deficient and after injections felt better but not well. I tested positive for h pylori (8/17/17) appox 3 months after starting (5/22/17) weekly b12 injections (im in the US). It has taken another appox 3 months since treatment before my stomach acid increased back up to better levels. I can now hear my tummy rumble after eating.

Please do not make yourself go through any additional months of waiting to feel better like i did.

When originally testing for h pylori you can have any of the 3 types of tests, blood, breath or stool. However you cannot have taken any antibiotics for the prior 8 weeks or bismuth products (pepto or tums) or proton pump inhibitors (prilosec, ect for heartburn) for 2 prior weeks, if using a breath or stool test.

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If those are your current results your GP is so wrong he should be struck off! Basically, those results show that you need an immediate dose increase. However, to ulitise the levo, you also need optimal vitamins and minerals especially B12 (over 500), folate (middle of range), ferritin (at least 70) and vitamin D (at least high 90s), - also need magnesium (and vitamin K2 if you are supplementing D3).

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Your GP is confused! These symptoms and your labs indicate you are completely not controlled for HYPO! LT4 50mcg is a mini dose and your TSH and FT3 are way out of norm. Very few docs know how to treat you! Ask your pharmacist who prescribes natural dessicated thyroid routinely or exclusively. Find someone who treats aggressively to get rid of these HYPO symptoms!!

NatureThroid is tough to get right now due to major upgrades (not problems) in manufacturing. You will likely do better at least with Armour Thyroid in an appropriate dose. These symptoms can go away.

Be sure they have tested antibodies TPO and TGAb for Hashimoto's.

Learn more, search for STTM

And run from that GP.

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The main thing you need is a good GP who knows what he’s doing ASAP. Good luck.

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