Thyroid UK
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Just been diagnosed

Hi there. Ive just been diagnosed with an under active thyroid. Ive been taking levothyroxine for just 5 days now. I fell tiredier than i did before. Is this a common issue? Ive just read a loton the nhs website and i didnt realise that tea or coffee cpuld affect the medication. I drink tea a lot. Can i still drink tea?

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Hello Pozymozy25

You can still drink tea and coffee but just make sure you take your Levo on an empty stomach and leave at least an hour before food! I hope you soon start to feel better take care

Kazbe x

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Thank you. Xx

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I’ve been taking levo for almost a year now. After a few months I started feeling normal again and gained my energy but then it went down again. You just have to keep checking your TSH levels and your vitamin D and leek adjusting your dose until it’s just right.

I wait 2 hours between my pill and coffee (I set an alarm 2 hours before I wake up for it because I need my coffee right away in the morning!)

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Make sure both your Ft4 and FT3 levels are checked, although getting the latter done is difficult on the nhs.

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it takes around 2 months to stabilise your energy levels on levo, so don't expect anything for a while. That's why GP's ask to see you again in a few months and should ask for more tests at that stage to ascertain if you need more/less. However, without the appropriate level of hormones in your body you won't rest properly. What my family find when we increase levo is that they sleep for a week because the body can.

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As I understand it you feel more tired than before because the tablets are relieving the pressure that the thyroid was under so the thyroid produces less T4. Everyone is different, it depends how long you have been ill and if you have other condition that affect how you feel to how long it takes to feel well. I started on Levo in 2012 and still feel unwell. A lot of others feel better much more quickly. I was once told it takes 1 month per year of being unwell on Levo to feel better.

Just keep getting checked and get the earliest blood test available 9 ish, no later, don’t take Levo in 24 hours before test.

Hopefully you will feel better soon.

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Hi. Ask your doctor for a printout of your results and post it along with your dose . It will be much better for people to help you then. Good luck. 😄

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Hiya, What doze have they put you on initially? It can take a while to get into your system, so you might feel worse before you get any advantage. Also it is likely that they will need to increase before you feel any benefit.

Regarding drinking, you can drink what you like but best take medication on its own without any other medication on a empty stomach at least 30 minutes before food so it can absorb.

Too much coffee and tea though could potentially make you constipated. Which is one of the downsides of thyroid conditions, but not all the time. So try and drink a lot of water too.

Hope you start feeling better soon. Take care :)

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At least an hour before food or caffeine drinks, or a couple of hours after the same seems to be standard advice. So very first thing is a common time as is last thing at night. I take mine in the middle of night, but then I’m akways up then briefly... no alarm needed....

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When I first started on Levo I was taking it in the morning and felt absolutely shattered. I now take it last thing before bed (2hrs apart from any food, meds or drinks - other than water). It doesn't send me off to sleep unfortunately, but I feel it works better.

Also, for Hashimoto I went completely and totally Gluten Free. It takes a while to adjust and get used to this but I feel so much better. To be honest, I was thinking GF was a food fad, but actually, I have to eat my words.

If you're worried about anything, post on here and lovely people who are very informed will advise - even with blood results etc. My GP doesn't know anything about Hashimotos or Thyroxine, except "it's like a butterfly in your neck" ... I mean, seriously lol. Best wishes x

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Is that like the big red organ in your chest is your heart? Where DO some of these people go to medical school?? Duh!

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Lol, I laughed reading your response. I just had a 'call back from GP' and she couldn't wait to get off the phone talking to me. Basically she told me nothing except... we'll repeat your bloods. Total waste of time.

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Hi Music. It's funny- but not really because she is at home most likely feeling well and we are feeling bad partially because of her lack of knowledge. Take care.😊 irina

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I read in my younger days that the over drinking of tea can remove B vitamins in particular from your system. Vitamin B-12, vitamin D, iron, ferritin & folate, I have more recently read on this site all have a tendency as it is to run low in people with low thyroid levels.

Further I've read here these levels all need to be optimal in order for thyroid medication(s) to perform properly in your body. You will find reading on this forum that it is highly recommended all these levels be tested too & posted for input on supplements that may be necessary to feel better.

It has taken for most of us a long time for the thyroid levels to get out of wack (surgical intervention is a exception). Unfortunately for many of us it takes a long time too, restoring & get things back to homeostasis again (as my physiology instructor would have put it).

The advantage to the thyroid medications, that take longer to work than say a diabetic's quicker acting insulin injections is we don't require such injections, & once you do get your labs optimal the monitoring will not be as frequently throughout the day like a poor diabetic. However, we do have to watch what we eat & drink just as a diabetic would. Gluten free meal plans are recommended as you will see reading up on this site. Big learning curve for new folks, welcome!

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When the blood results came back with an under active thyroid it also came back saying that im menopausal, which i was expecting to hear to be honest but i wasnt expecting the thyroid problem. Today, day 6 of my diagnosis, i feel extremely emotional and feel like i could cry at the slightest thing. My body doesnt know if its coming or going.

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Are you getting any help regarding the menopause?

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No not yet. The doctor wants to treat the thyroid issue 1st.

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Your menopausal symptoms masked your thyroid ones. As difficult as it is to adjust to this unwanted or foreseen surprise masking under the very natural but major milestone menopause presents at this time, it was fortuitous your doctor wasn't also thrown off by this masking.

Although coping with what both conditions throw your way at once is more than you had bargained for, the "psychic trauma" is said to be worse in the diagnostic phase. People are said to feel their greatest sense of frustration when things actually improve for them.

Intellectually one may understand all this but emotionally it is more difficult, especially when your hormones are in such a state of flux. You can expedite your transition by following the advice of so many here who have learned their lessons the hard way (i.e. winging it on their own). You can learn from all our mistakes!

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Im so grateful for all the advice as i really wouldnt have a clue. My doctor didnt say too much about it but may be that she is waiting for the next set of results.

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This is where I am after being started-finally- on an effective thyroid treatment path by a new endo last month. I'm starting to feel physically better but my emotional/mental symptoms are still making everything hard for me. I seem overwhelmed by the smallest thing. And I react out of proportion to minor things that I should be able handle. I was an operating room nurse for years (retired) and always handled most situation well but had a dr appt earlier this week and the transportation bus was 2 hours late; my friend came and picked me up at my senior living bldg so everything worked out but I was absolutely angry and bonkers over the whole incident. Furious with the transport people, angry at my friend for telling me to calm down. And at senior living I worry someone is going to think I need assisted living or something. I can't get all the 'what if's' out of my mind yet. As bad as I have physically felt the last 2 years because of inadequate thyroid monitoring and treatment with my PCP I think the mental sx are worse. Right now I'm avoiding other seniors in my bldg because being around so many people-all older and many medical problems gets on my nerves. When I first moved here I could listen to their medical problems and I think I was always a compassionate nurse. Now I feel like unless someone has a true emergency I don't want to hear about their medical problems. Been isolating in my apt. I guess a good way to describe myself right now is no coping skills. Sorry for the rant. There are many sicker people here than me but right now I just don't care. Thanks for listening. irina

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I can relate, as a retired nurse too (from Blood Banking). You get wrapped up carrying for others, then health forces you to look at your own life. This I’ve found hard to do unless I withdraw somewhat. We need to devote some time to our own health for a change.

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Thanks Clarrisa. I needed that support-feel a little guilty about not wanting to get involved. There are about 200+ seniors here, virtually all with various medical problems. It's one thing to be at work and available to help but when it's 24/7 when I run into people in the elevator or lobby and they stop me with unimportant questions it gets old. You wouldn't believe how many want to discuss their bowel movements etc. I know you get it. Most don't really want advice or opinions they just want to go on and on about their signs and symptoms in detail! Take care. irina

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🏥😂

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It is good to hear seniors are talking about their bowel movements, because I think my father passed from constipation complications in a assisted living home. Sounds like you need to use portable music with ear pieces though when you are out & about!

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LOL I do. Have my playlists in my pocket (phone). Music really does calm me down. I have to laugh because B.M.'s are important. It 's just an example and I don't mind listening if I can help-just not 'chapter and verse'! LOL 🐱 Nurses really can talk about anything.( Most of the time) I remember years ago being at a party when a guy came up and said "You're a nurse. I have this prostate problem..." I ordered another scotch and water!!!

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If u can avoid caffine

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My wonderful Dr told me that it's very normal to feel worse when you first start having treatment. He explained that every cell in your body has been starved of thyroxine so that when it is introduced it grabs onto it leaving you feeling more hypo than before. I have certainly experience this and every time I increased my dose in the past I felt that I had taken two steps backwards!

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Thanks Hashi. Good to know what to expect.

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Please excuse my ignorance but i have never heard of hashimoto. Does that mean that everyone with an under active thyroid has this? Im just learning about thyroid problems.

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No, it doesn't. But Hashi's is the most common cause of hypo. There are many others.

To know if you have Hashi's, you need your TPO antibodies tested. :)

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You need to get printed copies of your blood tests . You are legally entitled to them. You need to know exactly what has been tested, and what hasn't

Hashimoto's also more commonly called autoimmune thyroid disease by Medics in UK, is diagnosed by high thyroid antibodies. Usually high TPO or high TPO and TG antibodies

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018 due to new EU ruling)

How much Levothyroxine are you actually taking ?

Standard starter dose is 50mcgs

You need to know most recent results and ranges for TSH, FT3 and FT4, plus have you also had TPO and TG thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested.

Add results and ranges if you have them, come back with new post if not got them yet

Bloods will need retesting 6-8 weeks after each dose increase. Aiming for TSH around one and FT4 towards top of range and FT3 at least half way in range

With Hashimoto's it's very common to have low vitamin levels and gluten intolerance is common so important to have antibodies tested

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Many people react badly to Teva brand. If you are prescribed this one, you may wish to try another

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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Interesting. I would imagine if i had hashimoto then the doctor would have told me. Im not prone to catching bugs of viruses. Infact ive not even had a cold for at least 3 years now.

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Doctors currently think it not essential on the whole to test for high thyroid antibodies as there is no medication to directly treat it

You can't catch Hashimoto's, its autoimmune thyroid disease

But patients need to know if the cause of being hypothyroid is due to it being caused by autoimmune thyroid disease, because we can do much ourselves to improve things. Leaky gut is very common with many autoimmune diseases. Leaky gut can lead to food intolerances, especially gluten intolerance is very common as result. Low vitamins are very common too.

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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

Good that you have been started on 50mcg Levothyroxine. This is standard starter dose

It will be increased in 25mcg steps until TSH is under two, most needs it around one and FT4 towards top of range and FT3 at least half way in range

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

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Oh i didnt mean that hashimoto could be passed on i just meant that my immune system seems to be working well as i would imagine that if you have hashimoto then you would be more vulnerable to catching colds flus and viruses.

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No not necessarily at all.

Low vitamin levels are common and can cause symptoms themselves or affect thyroid too

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I am on 50mgs of levothyroxine. The doctor wants to deal with the thyroid problem before dealing with menopause. Ive got 56 tablets and ive to go for more blood tests in 6 to 8 weeks. Its really interesting on here as i really dont have a clue other than googling it.

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It seems to take about 8 weeks for your body to get used to a change of levo. I had mine increased from 75 to 100 in December and was asked ro retest TSH after 8 weeks (it dropped from nearly 5 to 0.6, so from above range to almist below). I did change my timing to around 3am so probably increased the effectiveness of the levo. Next bloods due in May....

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Does anyone else suffer from terror dreams? Id love to find what is causing them. Dont know it's my hormonal levels or something else.

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Yes when we are hypo the body over compensates for the missing hormones by excess adrenaline

Try to just do gentle exercise - walking, yoga etc while body adjusts.

It should slowly improve

Get vitamins tested too. Love vitamin D extremely common

Vitamindtest.org.uk £29 if GP won't

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It took me quite a while after I started taking Levo to function again. I went from being relatively ok to very ill when I was diagnosed. It’s been a long journey since then after taking 4 months off work to begin with and many increases in doses until I felt well again. It may not be this way for you but I think it takes more time than we realise for the body to adjust to Levo. Every increase I had gave symptoms which eventually settled down. As everyone says on here, you have to be patient. It’s not one of my virtues but I’ve had to learn how to be where the thyroid is concerned. Hope this helps.

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Every message helps as i knew absolutely nothing about this condition. Xx

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I think it can take a while before you start to feel better. They may increase your dose once you are settled on that one - they won't start you on a large dose at first. They should call you back to check your levels in a month or so.

Some people have more problems than others. I'm one of the lucky ones. I never think about the amount of tea I drink and I drink a lot. For me it helps stave off constipation though I see others on this thread think the opposite. I vaguely remember tea can impede absorption of iron, but I could be wrong. I used to avoid tea near food when I was pregnant.

I also don't worry about an empty stomach, although I am careful not to take it with any oily based food/medication which I think does hamper absorption.

Hope you feel better soon and best of luck!

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