Thyroid UK

told to stop my levothyroxine

I am new and I have been told to stop my levothyroxine due to symptoms of sweating during exertion, insomnia, weight loss, tremor and excitability, I have hypothyroid symptoms of hard stool, rumbling in ears/head, dizzy spells, dry skin, heavy periods with clots, tiredness.

diagnosed 2012 with hypothyroidism with a TSH of 44.6 (0.2 - 4.2) FT4 10.5 (12 - 22)

current dose 100mcg levothyroxine.

thanks for feedback

DEC 2017

TSH 6.2 (0.2 - 4.2)

FT4 12.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TPO ANTIBODY 207.5 (<34)

35 Replies
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When did your symptoms begin? Was it after or before these results?

Whatever you do, do not stop taking levothyrxoine on the basis of these blood test results.

TSH 6.2 (0.2 - 4.2) This TSH indicates your dose is too low. Most people don't feel well until their TSH is 1 or a little lower.

FT4 12.7 (12 - 22) Your FT4 is very low indicating that you do not have enough thyroid hormone available for your body to utilise.

FT3 3.3 (3.1 - 6.8) Your FT3 is very low and if you reduce your levothyrxoine it will go lower and make you feel very unwell.

Thyroid hormone should only be altered by 25 mcg at a time (50mcg if absolutely necessary) or you will feel very unwell.

If you are getting symptoms of excitability and tremor it is likely due to being undermedicated and your cortisol or adrenaline is compensating for lack of hormone, flooding your system giving you symptoms which seem like overactivity of thyroid gland. If your doctor needs to confirm what is happening he should order another thyroid test to ensure your TSH has not reduced and FT3 risen above range.

I would not be happy to stop taking my levothyroxine on the basis of those results of yours and would definitely ask for a retest before reducing dose. In fact these results indicate a dose increase by 25 mcg and retest in 6 weeks time and adjust.

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Symptoms began before diagnosis

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Are you saying that you had the symptoms of 'sweating during exertion, insomnia, weight loss, tremor and excitability' before you were diagnosed with TSH 44.6 in the year 2012?

Have these symptoms been continual since then or intermittent?

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Thanks. They have been intermittent now and they were intermittent before diagnosis

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Most likely this is due to the fact that you have Hashimotos thyroiditis. Hashimotos can cause fluctuations in thyroid levels due to the autoimmune condition and action of the thyroid antibodies. When you have a Hashi flare the autoimmune condition attacks the thyroid and destroys some of the cells. The dying cells release an overabundance of thyroid hormone mopped up by the antibodies. This activity may make you feel like your thyroid is overactive and TSH may reduce temporarily. When it settles down you will return to hyypothyroid state and possibly a little more hypothyroid than before due to slow destruction of thyroid gland.

YOu can read a better explanation on Thyroid UK website.

Thyroid UK’s website information on Hashimotos

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

If you are hypothyroid it's impossible to be hyperthyroid. Therefore the symptoms you are experiencing are either a result of a Hashi flare which may still be settling or it could be due to being undermedicated so that you are running on Cortisol or Adrenaline which can also make you feel agitated.

Sometimes although hormone blood tests return to normal it can take a while for symptoms to subside so test results don't always match symptoms. There's a kind of time lag.

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Are these symptoms concurrent or alternating? Whilst patients can sometimes be hypothyroid with normal hormone levels I have never seen anyone hyperthyroid with hormone levels that are a bit low like yours. I can't see how it can happen. Your high antibody count could lead to occasions of 'thyroid storm' when the thyroid pumps out extra hormone for a while, in this case your symptoms would alternate.

Is it possible you are starting the menopause? Obviously I know next to nothing about this but it makes sense to consider you may have two conditions together and this would confuse matters.

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Jimh111, “Thyroid storm” is a serious medical emergency, not the thyroid pumping out extra hormone for a while. Please forgive me for correcting you, but incorrect information is misleading.

Once a person is in thyroid storm, they require urgent medical intervention including intravenous rehydration, treatment to reduce temperature, beta blockers for the severe tachycardia, and carbimazole. So, if you or your doctor or carer suspects thyroid storm, they should immediately ensure emergency treatment is given.

“What is thyroid storm?

Thyroid storm is a life-threatening health condition that is associated with untreated or undertreated hyperthyroidism.

During thyroid storm, an individual’s heart rate, blood pressure, and body temperature can soar to dangerously high levels. Without prompt, aggressive treatment, thyroid storm is often fatal.”

This comes from the following website

healthline.com/health/thyro...

I have suffered thyroid storm, and can certainly vouch for the fact that it is very serious. I completely lost two days of which I remember nothing.

More here:

eurothyroid.com/files/downl...

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Thank-you, I must have had a hypo moment. I meant to say thyroid flare-up which is much milder. Apologies for any concern caused.

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Or do you mean a Hashi's 'hyper' swing? Because the OP does have Hashi's. With quite a bit of gland damage to have that TSH. So, hardly likely that the thyroid would be 'pumping out' extra hormone. More likely that it is the dying cells of the thyroid after an attack which dump all their hormone into the blood - which is what happens with Hashi's. :)

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I think we are saying the same thing, the dying thyroid releasing extra hormone as a consequence of autoimmune attack. I realise I didn't word it well, in a bit of a rush, I need to be more careful.

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Jimh111, We all have hypo moments occasionally, I hope you did not mind my putting the record straight.

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I'm grateful, it was a simple error but quite a big booboo.

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I am 31 so not menopausal and I have had symptoms since diagnosis

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In that case I would treat your hypothyroid symptoms and see how the 'hyperthyroid' ones get on. It's possible that the insomnia, tremors etc. are something else or even a weird consequence of hypothroidism. Get your levothyroxine increased and see how it goes.

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Jim,

It’s possible that this could be adrenaline compensating for lack of thyroid hormone.

Insomnia, exercise intolerance, sweating and over/hyperactivity, inability to gain weight certainly plagued me before my diagnosis of central hypothyroidism. I also have Hashimoto’s too. So bad both ends!

A vicious cycle can occur whereby hyperactivity or over exercising can encourage a Hashimoto’s swing towards hyper whilst still being clinically hypo.

Your thoughts...?

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Can't really offer any thoughts on this as I'm not up on central hypothroidism (as opposed to a down-regulated axis which just affects the thyrotrope as opposed to the whole pituitary). I've never seen research suggesting 'adrenaline compensating for lack of thyroid hormone', it sounds like something an 'alternative' doctor would dream up. I can't see a mechanism but if anyone has details of any studies I'd appreciate seeing them. A long time ago I searchws PubMed quite thoroughly for associations between hypothyroidism and pituitary hormones (pituitary hormones and also hormones stimulated indirectly by the pituitary). I couldn't find much except noradrenaline, if I remember correctly. A number of hormones and other substances do tend to get a little elevated in hypothyroidism because clearance is often reduced as a consequence of a slower metabolism. This really is the limit of my knowledge on this, sorry.

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I’ll see if I can find any literature. I maybe romanticising !!

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I suggest you demand a referral to an endocrinologist asap. When I was on 100mcg of Levo I had similar problems to yours. I asked for it to be reduced but the GP refused. Without going into details, that was a huge mistake for which I will always pay. I therefore don't advise you to just follow your GP's instructions: in my experience they know nothing and care even less about hypothyroidism. Now, I take a combination of T4 (50mcg) and T3, according to an endocrinologist's instruction but not endorsed by my GP, and a lot of those symptoms have abated. I would advise you to continue your Levo, your tests definitely suggest you still need it, but if you're not taking selenium, start that right away as it helps you convert T4 to T3. T3 is the hormone our bodies get the energy from. And if you're not gluten and dairy free, try that as it helps many of us get those thyroid destroying antibodies down. But see an endocrinologist ASAP (and hopefully you'll get one that isn't only interested in diabetes).

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Thanks I will start taking selenium as of now. I am not under a very good endo. He says my symptoms are not thyroid related and completely disregarded the antibodies

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Change your doctor or whoever gave you the above advice to stop levothyroxine as they are ignorant about hypothyroidism.

What you need is an increase in dose as your TSH should be 1 or lower if on levothyroxine and both your FT4 and FT3 are at the bottom of the range when it should be in the upper part - no wonder your feel awful.

Your body and everything in it is struggling, i.e. your heart and brain in particular as well as our whole metabolism. They just have no clue about anything to do with a dysfunction of the thyroid gland.

You have an Autoimmune Thyroid Disease also called Hashimoto's and it is the commonest form of hyptohyroidism as the antibodies attack your gland (wax and wane) until you are hypothyroid.

Sometimes you might feel 'hyper' but that's when the antibodies attack.

You can help reduce the antibodies by going gluten-free.

Contact your doctor and tell him youve had advice from the NHS Choices for help/information on dysfunctions of the thyroid gland and that you need an increase of 25mcg and a blood test in six weeks until your TSH is down to around 1.

You are suffering with clinical symptoms due to too low a level of levothyroxine.

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

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You look under medicated and shouldn't be stopping thyroxine if you have Hashimoto's.

Why are so many doctors clueless about thyroid problems!

Karen

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Every number in your thyroid panel indicators extreme undermediction! Any doctor that looked at this and wants to reduce your dose knows nothing about thyroid.

I think I can see what's happened, though. Your doctor has heard a small number of symptoms they associate with being hyper, and has just panicked. But many thyroid symptoms are ambiguous and can be very similar for hyper and hypo.

For example, when hypothyroid gaining weight is very common. But many people's weight stays stable, and a smaller number of people lose weight. Insomnia is a symptom of both extremes. When hyper it's more like being hot and restless, but for hypo it's the body not having enough energy to relax itself, or to manage for many hours without food, etc.

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Ask for vitamin D, folate, ferritin and B12 to be tested

Do you have high thyroid antibodies? This is Hashimoto's also called autoimmune thyroid disease

Your are very under medicated to have TSH so high

These symptoms are likely due to low vitamin levels due to under medication

Have you recently changed brand of Levo

Or had T3 started and then stopped

Low vitamins are extremely common and especially as result of under medication

See this post

healthunlocked.com/thyroidu...

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TPO ANTIBODY 207.5 (<34)

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So very definitely Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Extremely likely to be far too low

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then 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...

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Have not changed brand of levothyroxine or had T3 started and stopped

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Your symptoms could have a number of causes related to thyroid or thyroid medication but it is glaringly obvious that you are currently undermedicated so increasing your medication by 25mg every 6 weeks for a while would be the obvious treatment at the moment. Did you GP take your pulse and your temperature. It would be helpful if you were able to do this. It might also be worth asking your GP for some tempory medication to help with symptoms as they do sound distressing in the mean time. Something to reduce anxiety and help sleepmight be useful untill your thyroid hormone levels increase.. Also you might want to try an epsom salt bath before bed. Most people do well on levo at the right dose but a minority are unable to tolerate it very well but I would assume your symptoms are as a result of under treatment. When I used to walk up hills before treatment sweat used to pour off my face and I alwasy felt hot. Can I suggest that you stop exerting yourself until you feel better exercise will only make matters worse. Take gentle strolls in the countryside and meditate. Try to find a better GP and let us all know how you are getting on.

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Pulse 41

Body temp 34.6

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Severely hypo

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

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I would hope that you GP on hearing that pulse would realise how much you need more not less thyroid medication. Your temp is silly low as well. I would suggest as despite all evidence to the contrary doctors do not like to admit they are wrong you see another GP in the practice and ask for an increase. If there is a GP in the practice who seems able to listen and not overly confident they are in my experiance are more helpful. Have as much rest as you can in the mean time.

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Your symptoms are those of hypothyroid ....being told to stop levo is ridiculous

Clearly whoever is treating you knows sqaut about thyroid

Have they bothered to test

Ferritin

Folate

B12

Vit d3

Because unless all those are at least halfway in their ranges your bidy cannot correctly utilise the levothyroxine

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I experience similar symptoms of insomnia, sweating, excitability, anxiety etc. when I am under medicated. Your adrenals are pumping out cortisol to compensate for the low thyroid. Don’t stop taking your medication. Everyone’s advice here is correct. I attributed my symptoms to the medication when in fact it was my own adrenals causing the symptoms.

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Thanks that would make sense since I have had an increase in carsickness which can be caused by excessive cortisol? I have not had carsickness since I was 9/10 years old. I had a private saliva adrenal test which showed over range cortisol but I didn't have a high enough income to sort it out

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Hi Poppy , you sound like I was a few years back. You list a bunch of symptoms, that I mostly worked out with the help of Stop Thyroid Madness and HealthUnlocked.

sweating during exertion - side effect of Thyroxin

insomnia - I still get it from time to time, something todo with damaged thyroid/adrenal glands, improves a little with getting TSH down. I also find my NDT if taken at night makes it worse.

weight loss - Absorption issues - my guess is you are and undiagnosed coeliac, this is an autoimmune disease of the gut, it is triggered by eating wheat/gluten products and damages your intestine. The immune system goes haywire and then attacks the thyroid and hence your high TPO.

tremor - is excess of Synthetic T4 (Thyroxin) in your tissues (T4 pooling). This happens because you stop converting T4 in Thyroxin because your Adrenal system has given up because of lack of T3. It’s a vicious circle, you need T3 to make T3 from T4. You can get in the position where you can have buckets of T4 in you blood, a good TSH but very little of it is getting converted to T3. The excess T4 poisons the nerve ending hence the MS like symptoms.

Excitability - and anxiety which is part of the low thyroid condition.

Hard stool - low thyroid problem. But graze on dried apricots/peaches/sultanas/nuts through the day and it will help

Rumbling in ears/head - Tinnitus. Very normal for thyroid patients. Mine increases when I have too much or too little NDT.

Dizzy spells - same as above, your ears are your balance machines and when the little nerve fibers get damaged by low thyroid you get Tinnitus and Balance problems. I’m 98% ok these days on NDT, but when I first converted I struggled with Dizzy.

Dry skin - Thyroxin - just a side effect. Dry eyes too ?

Heavy periods with clots - Low thyroid condition eventually damages every cell in your body. When I was being stupid and not taking enough thyroxin for 6 month, because I hated the side effects, I ended up haemophiliac. I would bleed for 30minutes from a paper cut. Not enough T3.

Tiredness - Don’t know exactly, it’s new for me too. If I have a hot or carb meal at midday I will need to crash for a few hours after. This can be at work or anywhere. I now just stick to dried fruit and coffee during daylight hours if I can't afford the sleep time. It will be a adrenal related.

My suggestions, go 100% gluten free to treat the Coeliacs and get the blood test. Get some synthetic T3 into your daily synthetic T4 mix or convert to NDT if you can afford it. It will take you 3-6 months to repair all the damages/organs etc. Read everything you can on Stop Thyroid Madness site. Goggle "thyroxine side effects”

Best of luck

James

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I get all these symptoms now and again and have found that the hot flashes/sweats come on more often when I consume carbs especially sweets or fruit, apart from taking vitamins and selenium I have found that splitting my dose of levo and taking half at night and rest in morning helps somewhat, i also slightly reduce the dose when weather is really hot and increase it when cold. Im 69, have Hashi and been taking levo since diagnosed in2009,gluten free for almost 6years and try to eat fairly low carb which mkes my symptoms bearable most of the time.

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