Thinking of coming off levothyroxine

[Gilliano666]

Hi all, my recent tsh test came back as normal and I'm taking the lowest dose possible of levo. I reckon the doctor will tell me it's up to me whether I continue taking them or not. Looking at the side effects, it seems a better idea to come off them?

[Hennerton]

You need to give more info for a helpful response. What dose, what TSH result with the reference range, how you feel, etc ...

[Gilliano666 in reply to Hennerton]

Hi and thanks for your reply.

I see by your profile that you are a fellow victim of Graves disease. I was diagnosed 5 years ago and went through a torrid time, responded well to carbimazole and approx 3 years ago I had the radioactive iodine. That led to hypo and I have been on and off levothyroxine ever since. (Under gp advice).

I've been back on Levo for 3 months and my latest tsh was 1.54.

When it was 7.28 3 months ago, my gp said it was up to me if i wanted to go back on 25mg of levo. I'm pretty sure she will leave the decision up to me agian.

Oh and i feel physically fine, but really struggling with low mood, mainly at night time.

Sorry it's such a long message 🙄

[Hennerton in reply to Gilliano666]

I can see you have had lots of useful replies, while I have been out for the day. I hope you feel more in control. The more we learn, the easier it is to look after our own health and not to rely on our doctors, who usually know nothing about thyroid matters. This is probably the reason your doctor is leaving the decision to you, because she does not know enough to advise you. My own GP cheerfully says to me that I know more than she does and leaves me alone.

As many members have said, sometimes we have symptoms that are caused by low thyroid but we do not attribute them to this. I would guess your low mood is caused by being hypo and 25mcg is a tiny dose for someone who has had radioactive iodine treatment. I had thyroidectomy, which means that at least I know I am starting from nothing with my replacement hormone. I wonder if your thyroid is producing anything now?

[Gilliano666 in reply to Hennerton]

Hi and thanks for getting back to me again. I'm really grateful for all the advice I've received on the forum and feel much better equipped to move forward now.

As for the radioactive iodine, apparently it's a bit vague as to what it will produce since the treatment. That's according to the endo, and I'm now under the care of my gp, as was discharged from the clinic.

I do hope you are well since your thyroidectomy

[Hennerton in reply to Gilliano666]

Well, up and down for some of the time but grateful to be getting T3 still on the NHS. For how long I do not know. You would do well to get your free T3 tested, as low T3 is often implicated in depression and low mood. I went for six years on Levothyroxine only, until I realised I was not normal in being constantly ill with one thing or another and when I eventually got my GP to test my free T3, it was below range. At that point I saw an endocrinologist privately and got my first prescription. That was 2012 when it was freely given where necessary. You probably have seen all the posts about its withdrawal from many members of this site but it can be sourced privately.

Hope you start to feel better soon.

[Gilliano666 in reply to Hennerton]

This thyroid stuff really is a minefield, it's a shame that sufferers have to learn about it in such detail and source our own help. I had absolutely no idea how little our GP's understand the condition. I have a friend who works in a pharmacy and she told me that thyroid medication is the most commonly prescribed medicine. With that in mind, you would think our doctors would be more clued up and better funding would be in place.

Anyhow, at least this group offers lots of support.

I have only just joined and haven't read many posts as yet.

Wishing you a good weekend

[Hennerton in reply to Gilliano666]

Yes, I agree and it is astonishing that thyroid problems are now so prevalent. Something odd is going on in the environment, or with our food, laced with pesticides - even organic, which I try to eat most of the time, is probably not completely free of vile additives. We are fighting a losing battle, I think.

[RedApple Administrator]

Gilliano666, If your thyroid is not producing the amount of thyroid hormone that your body needs, then it's usual to take replacement hormone. The dose needed will depend on the individual and how much their own thyroid is or is not contributing.

Just because you are on the lowest dose does not necessarily mean you can do without it. If you stop taking it, you may not notice much difference for a while. But over time, symptoms can start to build up as the body struggles to cope without the amount it needs. You may not even realise that those niggling symptoms are related to insufficient thyroid hormone. You and your doctor may start looking at other reasons and even start taking other medications to try and alleviate the symptoms as they emerge.

Get a thyroid blood test done just before you come off the replacement hormone so that you have something to refer back to at a later date.

[Gilliano666 in reply to RedApple]

Thanks you for your advice, it does make sense. I've been on and off levo for a couple of years now. The endo has discharged me back to the care of my gp, and even he was in 2 minds as to whether I should be on any meds , as my condition was brought on by the radioactive iodine I had for graves disease.

I want to come off it as I'm hoping my mood may improve. I see depression is a common side effect.

[RedApple Administrator in reply to Gilliano666]

Depression is also a very, very common symptom of too little thyroid hormone! If you've had RAI, then too little thyroid hormone is definitely a possible reason for your symptoms. Please get a blood test to see what your levels of TSH, FT4 and FT3 are whilst taking medication. Then post them on the forum for further input from members on your situation.

[Gilliano666 in reply to RedApple]

Thank you so much, I will do just that. My last tests only showed tsh.

[greygoose]

It's probable that the only reason your TSH test came back as 'normal' - whatever that is - is because you are taking a low dose of levo. If you stopped the levo, it would go back to being high. Levo does not cure hypothyroidism, it just replaces the hormone your thyroid can no-longer make.

[Gilliano666 in reply to greygoose]

Hi there and thanks for your advice. I'm sensing an air of caution, going by the replies I have read, will speak to my gp first

[greygoose in reply to Gilliano666]

It's very wise to be cautious, you can't play around with these things. But, I doubt your GP would know much about it.

[MaisieGray]

Levothyroxine isn't a cure, it's a treatment. Your serum hormone levels are what they are, in part, as a result of taking it (depending upon the functionality of your thyroid). There is a multiplicity of feedback mechanisms between the thyroid, hippothalamus and pituitary glands, and the pituitary's TSH is directly impacted by levels of thyroid hormone and vice versa. Impact one and you impact the other. However, as a pituitary hormone, the TSH cannot be used to in isolation, to judge need for exogenous thyroid hormone replacement.

[Gilliano666 in reply to MaisieGray]

Thank you so much for your reply and for sharing your knowledge on the subject with me. I guess my initial message didn't contain enough info, but long story short, I am in remission from Graves disease and have acquired hypothyroidism due to radioactive iodine. I have been on and off levo for aprrox 2 years. My gp even left the decision down to me when I was last prescribed them just 3 months ago. Just not sure if I am better off with or without meds. Time will tell no doubt

[greygoose in reply to Gilliano666]

It doesn't matter what caused your hypo state. Hypo is hypo and thyroid hormones need replacing because you cannot live without them.

[shaws Administrator]

Some people may have side effects from taking levothyroxine. Sometimes they are sensitive to the fillers/binders in it.

If you're hypothyroid you cannot stop taking any thyroid hormone replacements or you can go into a coma.

Despite what doctors think, the TSH is not a thyroid hormone, it is from the pituitary gland and rises when the thyroid gland is struggling. In some countries people will be diagnosed when TSH is above 3+ but in the UK they state TSH has to reach 10 before prescribing.The aim, when diagnosed and given levo or any other thyroid hormones is for the TSH to be around 1 or lower and FT4 and FT3 in the upper part of the ranges. T3 is needed in our billions of T3 receptor cells for us to function normally. T4 (levothyroxine( is an inactive hormone and should convert to T3.

Read from halfway down the page on this link:

hormonerestoration.com/

[Gilliano666 in reply to shaws]

Hi and a big thanks for taking the time to send me such detailed information. I've had some really useful adivce from yourself and others that now I feel better equipped to take the next step. Will also read the link you sent me 👍

[shaws Administrator in reply to Gilliano666]

This is a list of symptoms. I think you'll be surprissed.

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

[Gilliano666 in reply to shaws]

I have one word. Wow ! 🙈

[shaws Administrator in reply to Gilliano666]

I bet your docto rmay also not know any but, like many other doctors, prescribe another medication for a symptom instead of increasing dose of hormones.

[FancyPants54]

I had horrible depression and anxiety from being kept on too low a dose of thyroxin for too long a period of time. I wasn't too bad on 25mcg but when it was increased to 25/50 alternating days I got into a mess and that didn't clear up until I got to 75mcg a day. Am now on 125 (not yet optimal) but that awful depression, low mood, anxiety has gone. Just bobbing around on 25mcg might be doing you no favours at all.

Others have suggested you get a full thyroid panel done. Considering you have had RAI your GP should be able to order the full panel to include FT3 and FT4. If he can't or won't you will need to do it privately. Others on here will give links to the recommended labs that are regularly used here. I'd stay as you are for now until you find out more about your actual levels.

[Gilliano666 in reply to FancyPants54]

Hi, thanks for your message. It's reassuring to know that with the correct (well almost) correct dosage of levo that your symptoms of anxiety and depression subside.

The general consensus is that my dosage may be too low and here was me thinking of coming off it altogether.

Im thinking of seeing one of the locum gps as they tend not to worry about the cost of blood tests etc and may stand a better chance of having a full thyroid function test!

Hope you are well and long may that continue

[SlowDragon Administrator]

As you have had Graves, just testing TSH is completely inadequate

After Graves TSH is often unresponsive or sluggish

Depression and low mood are symptoms of being hypothyroid, so you are probably under medicated

once on Levothyroxine, TSH is not an adequate method of assessing levels of thyroid hormones

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are EXTREMELY common and often need improving by supplementing. Essential to test first

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you have results and ranges

[Gilliano666]

Thank you so much for all that info. I really had no idea about any of the facts you mentioned. I actually feel a bit better for reading this, even though I realise I was going in the wrong direction as far as treating myself. I will read the link you sent and am making a few notes about the vitamins etc. I feel really quite positive now. First time in a while 🤗

[shaws Administrator in reply to Gilliano666]

Knowledge is strength and also collectively we don't feel so lost and so ill and have hope.

[SlowDragon Administrator in reply to Gilliano666]

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 print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many, otherwise we need high FT4 and suppressed TSH in order to have high enough FT3.

Note especially his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

Getting full private testing including vitamins is first step

Come back here with new post once you have results and ranges

Getting Levo dose high enough to bring FT4 towards top of range and all vitamins optimal are next steps

If, after all this, FT3 remains low looking at getting DIO2 gene test and seeing a T3 friendly endo for T3 prescription

thyroiduk.org.uk/tuk/testin...

It's taken many of us on here years to get correct treatment

As Shaws says.......knowledge is power

Getting full testing is essential

And there's always support, advice and encouragement on here

[Gilliano666]

Thank you for such useful information. It really is a complicated issue to get to grips with , but I also feel empowered with the knowledge gained. Just downloaded Dr Tofts document, kettle on, ready for a good read 👍