Hello I'm feeling confused and worried. I'm 52 and for whatever reason my body started to become intolerant to medication, chemicals and food 5 years ago after being ill.
Luckily I don't get Ill very often so at the moment I am coping.
The issue is that I have been on Thyroxine for 20 years, 50mg, it has never changed. Blood tests have always been fine apparently.
Over the last couple of months however I seemed to be reacting to my thyriod meds, I would shake, have bad indigestion, headache, feel hot and damp after taking it. At the end of the day I would feel more normal but it would all start again the next day after taking it again.
I tried different brands but I still felt the same, I saw my practise nurse who suggested I just stopped taking it but I wasn't sure so I made an appointment with my doctor who said the same without me mentioning it. I was borderline when I started it.
I am now 8 days without it and I'm feeling a bit tired and a bit anxious, do you think I could be feeling like this already.
Thank you.
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Caravan18
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The aim of Levothyroxine is to increase dose slowly, retesting bloods 6-8 weeks after each dose increase.
Essential to test vitamin D, folate, ferritin and B12
These are often too low if left on too small a dose for too long
Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
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
Come back with new post once you have results and ranges
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Ask GP to test thyroid antibodies and vitamins if not been done
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Essential to test vitamin levels, FT3 and thyroid antibodies
You need to get hold of your blood test results, recent and historical. Ask for a print out, don't accept verbal or hand written results, they may be inaccurate. Ensure the print out includes the lab ranges. You are legally entitled to a copy of your results. When you have them, then post them here and people will help interpret them. You will then have proper information to make decisions about dosing or stopping levothyroxine.
If you have stopped taking levothyroxine you must have your blood tested in 4-6 weeks time to check you are not becoming hypothyroid unless you have evidence to prove you did not need the levothyroxine in the first place. Try to get the results of your blood tests when you were first diagnosed as this might give a good indication of your diagnosis. You should also check whether Thyroid antibodies TPO and TgAb have been tested.
If you stop taking Levo your body isn't going to know what's hit it after 20 years on it ! There's no guarantee your own thyroid is going to kick in and start working properly again.
It depends how your surgery works. At mine, I can just book an appointment with the phlebotomist. Ask or phone reception for an earlier appointment with a phlebotomist. They'll soon let you know if it's not possible in which case you'll need a telephone apt with the doc to say you're not feeling well and need to bring your blood test forward.
It takes 6 weeks for the full effects of thyroid hormone to be revealed so 4-6 weeks will show which direction you're going in.
You can register online for blood test results, ask at reception for the information to register for patient access to blood test results. That way you will be able to view your results before you speak to your doctor and be more prepared.
You are entitled to good care and to get your health sorted out. The Doctor gets paid to see you so just do what you need to do for your own health's sake. You're as much entitled to his time as anyone else is. If it turns out that you were misdiagnosed then you're more than entitled to get it sorted out. If it turns out you need the levothyroxine then you don't want the nurse and doctor making you ill by removing the medicine. Either way, pursue it and ignore anyone who makes an ill informed judgement. You do not yet have enough information to know how best to manage your health and you do need the information and evidence to make sensible decisions.
Many do find it's better absorbed by taking in evening
But it's far more likely your symptoms are due to not being on high enough dose of Levothyroxin, causing low vitamins and adrenal exhaustion
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
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 or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
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)
Thyroid blood tests should only be after 6-8 weeks on constant dose
Check the lab range. The figures are written like this
TSH 1.51 (4.9-0.25). The numbers in brackets are the lab range. Lab ranges vary so that's why it's important to have them along with the blood test result. Also, when you post results on this forum, add a date for the test and the amount of levothyroxine you were taking at the time then people can interpret them correctly and help you understand what is happening.
Ok, so what you need to find out is your blood test result when diagnosed and before you started taking levothyroxine and whether you have had thyroid antibodies TPO and TgAb tested and if so, then, what was the result?
TSH 1.51 ( 0.27-4.2) looks like a normal result for someone taking levothyroxine. However, 50mcg is not very much levothyroxine and a few people who do not have thyroid disease and are not taking levothyroxine would function perfectly well with a TSH of 3.0 or even 4.0 as it can be very individual.
So if possible, find out whether your thyroid blood test TSH result was over the top of the lab range when diagnosed and exactly what it was. The top of the lab range on the results you've given here is 4.2 so anything higher than that is abnormal.
If you have TPO antibodies it shows you have thyroid antibodies whatever the TSH results are. Sometimes thyroid antibodies do not progress to destroy the thyroid gland but often they do. You can read more on Thyroid UK's website.
So, you see to understand what is happening you need to get hold of historical blood test results and you will need probably need more blood tests.
Hello I made another appointment withmy doctors and had a third opinion on stopping my thyroxine.
She also suggested that I shoud stop taking it and told me I didn't need a blood test at this point.
I have been off them for nearly 3 weeks now and I have been suffering some anxiety in the evening, I also feel tired. Really hope this is going to go away.
Going to pay for a blood test to see how I'm going.
Do you think this could be the result of stopping already.
You say you had a third opinion from the doctor and this doctor also advised stopping your levothyroxine. However, what facts was the docs opinion based on? Did the doctor review your blood tests when first diagnosed and discover that you had been wrongly diagnosed?
Did you get a print out of historical blood tests? You need to get the biochemical evidence, not just an opinion. Opinion should be based on evidence but if you don't view the evidence, how can you evaluate whether it's a good opinion or not?
All she would say is that when first diagnosed I was borderline and in the 18 years my TSH has always been good, right in the middle and never changes.
She told me we know your case better than anyone else and it was best to stop and have a blood test at 8 weeks.
I am allergic to lots of medicine since I became Ill 5 years ago.
When I need antibiotics I have to go in to hospital as so far I have had an allergic reaction to most of them.
There is a list of medicine I can't have and it seems thyroxine is next.
Why don't you ask the receptionist for a print out of all your thyroid blood test results? You are entitled by law. Many, many people on this forum get print outs or register online for results as you will see reading through the posts here. Then you can see for yourself what the doctor means by borderline.
Borderline could be just above the top of the reference range or it could be much higher depending on what the doctor thinks borderline is.
At least if you get actual results then you'll have the facts. Make sure the print out includes lab ranges.
I don't find it very helpful for a doctor to say, we know your case better than anyone else. After all it's your body, your results, not theirs. Did you find out if you've got thyroid antibodies?
By the way, you can't be allergic to thyroxine as it's chemically the same as your body produces, you can be allergic to fillers in tablets. If you don't need levothyroxine then you don't want to take it but I've known people who were wrongly diagnosed as needing levothyroxine and then stopped taking it and had quite bad symptoms as a result of stopping it.
I would ask your GP to test your vitamin levels, B12, folate, ferritin and Vit D, especially if it turns out you've been prescribed levothyroxine and didn't need it. Your tiredness could be due to low vitamin levels.
They told me they couldn't see my early results as I moved to a different area last year, I did ask for all it said on the form and they said they only had the TSH results.
You could get the print out of your TSH results as a starter. If the doctor can't see the results when diagnosed then how come the doctor told you they were borderline when diagnosed? If the doctor can see the results then you are entitled to a copy too. Also, how can they know your case best if you only moved to the new area recently and they haven't got the results from your previous GP? When you transfer to a new NHS GP practice the notes are tranferred too.
OK, well many doctors in the UK consider a result anywhere around TSH of 10.0 borderline. Diagnosis doesn't always begin until TSH is over 10.0 However the top end of lab range for normal is often around 4.5 or 5. So you do really need to know what your original test result when diagnosed was and whether you have thyroid antibodies. I guess you'll just have to wait for next blood test but from now on ask for copies of results. I hope you get this sorted out soon.
Are you able to have Private Testing to ensure all the correct tests are done. Home testing kits available from approved companies - in the link from SlowDragon ... NHS rarely do them ...
Hi, I am really interested in your reply to Caravan 18. I am only on 25mg of levo and waiting to see my gp as Im suffering from low mood. I would rather take the medication at bedtime as I sometimes eat or drink a bit too close to taking it. My endo told me not to take it at night time as it gives a burst of energy. I've never felt a burst of energy from taking my meds. Was wondering what your thoughts are x
Gilliano666 I've never, in 40 yrs of taking Levothyroxine, felt "a burst of energy", nor anything like that. Levo is a synthetic version of the body's endogenous T4, which is largely a storage pro-hormone. It has to be converted in the peripheral tissues into the usable active form T3, which is what is absorbed into the cells and drives our metabolism. For the first 30 yrs I took it in the morning, for the last 10, I've taken it at night, with no difference at all. Your Dr may be unaware that there is evidence that some people do better taking their Levo at night; but the best time to take is is whatever is the best time for you. As has been mentioned, 25 mcg is a starter dose only if you are over 50 or have cardiac problems, otherwise the recommended starter dose is 50 mcg with regular 6 wkly blood tests and increases as required thereafter, until you are euthyroid and symptom-free.
Thank you so much for your detailed and helpful reply. I must say, I've never felt this mythical burst of energy since taking levo. Wouldn't mind if I did though. I have a gp appointment next week so I will discuss my dosage. I am 52 years old, but no cardiac problems and otherwise in good health, my main problem is with my skin and low mood. Hopefully a slight increase in levo will sort me out x
When I was on levo I found that taking it at night was much more effective and convenient. I took it before bed, none of this getting up in the middle of the night malarkey!
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