I just started taking levothyroxine a week a half ago after having increasingly bad hypo symptoms for over a year (and, actually, probably longer but it's been really bad for a year). I had a hell of time getting the doctor to believe me that something was physically wrong. I've been reading this forum and it's been super helpful and informative, but I'm feeling really overwhelmed and discouraged that people say taking just levothyroxine doesn't help and there's all these other medications and supplements, etc. Can anyone vouch that just taking levothyroxine helped them (or anyone they know)? There just seem like there are too many options/combinations to figure out all on my own. I realise that people on this forum might be the ones with the trickiest cases and maybe there are people out there that levothyroxine helps that don't go on the forum?
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Suze3748
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Most people are fine with levothyroxine. I take NHS provided levothyroxine.
However, levothyroxine is a hormone. It is not a drug like paracetamol which pretty much acts the same way at all times in everyone.
Levothyroxine needs some care in how you take it. You need to take it on an empty stomach and leave an hour until you eat or drink anything except for water. Leave 4 hours before taking any supplements or vitamins. The reason for this is that food and drinks can affect the way you absorb it. And supplements also affect absorption. You should also stick to one brand of levothyroxine as you might absorb types of levothyroxine differently.
Levothyroxine is similar to a low index drug so small increments can make a big difference in hormonal levels and in how you feel. Some people are more sensitive to changes than others.
Thankfully, it is a low cost hormone that replaces what we lack and when you are on the right dose you should be symptom free, that is the aim of thyroid hormone replacement.
The great majority of hypothyroidism is caused by autoimmune thyroid disease. You will hear many people on this forum who have a range of symptoms despite taking levothyroxine and so they need to explore what is causing this further which is why it is recommended to get vitamins checked first as this can give some indication of what the problems might be and help to exclude other autoimmune conditions or give a clue as to what needs further testing.
Thyroid disease symptoms can be similar to many other conditions and symptoms that don't clear up when treated with optimal dose of levothyroxine should be explored as there could be another conditon that needs treatment.
What has caused your thyroid condition? Have you got thyroid antibodies and have you got autoimmne thyroid disease?
Thanks for the reply! It's unclear what's causing my hypothyroid bc my test results are normal and the doctor is skeptical. I had TPO antibodies checked twice and it was in the 'normal' range [<3.0 u/mL, range <5.0 u/mL; 14 range <34]. I haven't had the other antibody test.
Vitamin D 40 [50-250 nmol/L]; Calcium 2.18 [2.15-2.50 nmol/L]
My TSH level goes up and down pretty drastically depending on the time of the month. I had two high tests in a row so the doctor put me on levothyroxine.
In the past week and a half my worst symptoms - breathing problems, numbness in limbs - have gotten better taking it... I'm on 50 mg per day.
Can anyone vouch that just taking levothyroxine helped them (or anyone they know)?
Yes, I did very well on Levo for 20 years (I have been diagnosed and treated for 43 years). Then something happened which sent everything haywire, doctors no help but have now discovered there's a lot more involved such as optimal levels of vitamins and minerals, etc.
There are many, many people who do very well on Levo but you wont find them here, they're living their life and have no need of us.
If you need any help then just ask, but we need full information so remember to include your test results (including reference ranges) and tell us what dose of Levo you're on, whether you take any other medication for other conditions and whether you take supplemennts. For a full picture the tests needed are
Thanks! That's good to hear! Yeah I have been trying to get all the test results but the doctor is really reluctant to do the full tests. I got the private test but it was all normal range, got another private test and it was more abnormal - it's really all over the place - my symptoms have been really bad though so I'm just hoping the levothyroxine will help me relieve the symptoms
From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].
The fact you are on here learning how to improve and get the best treatment, means you definitely have a head start on many
Presumably your GP started you on 50mcg dose of Levothyroxine?
Do you have copies of blood tests from before treatment?
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take Levothyroxine 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
Low vitamin levels are extremely common. Especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by high thyroid antibodies
Have you had thyroid antibodies tested or vitamin D, folate, ferritin and B12?
Your Thyroid levels will need retesting 6-8 weeks after starting or changing disease
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)
Always request printed copies of all blood test results and ranges
Thanks for the info! I guess I just need to be patient... but since I already waited so long before they would treat me I guess I'm just desperately hoping this will help
The majority of people do very well on Levo and you won't see them on here because they don't have any problems. You have to be patient as it can take many many months to find the right dose, there's no quick fix with this.
Hi Suze, I have had an under active thyroid for about three years now and was on 75 mg of Levothyrixine. This initially worked really well for me if taken correctly as suggested in the other posts. For some reason however things went a bit haywire this year but fortunately I have found great support and advice on this forum. I am having a private blood draw tomorrow for my blood tests so will post my results hopefully next week.
hope you get some info from the blood tests! it's really a shame we all have to pay out of pocket for so many private tests. I've already shelled out for 2 rounds of tests while I suspected thyroid issues the doctor didn't believe me or my symptoms... I'm on 50 mcg right now - I think I need a higher dose though - haven't had any of the 'side effects' that indicate you're having too much and still have symptoms, but then it's also only been a week and a half. thanks so much for the reply!
I was on 50 mg initially and then they upped it to 75 after about six weeks and it was fine. Hope you're feeling better soon. Never thought I would be so excited about having my blood taken.
haha yeah... I was in the hospital briefly because my symptoms were so bad and I think I had blood taken 10 times that week for various things - I never thought I'd know where my "good veins" are... but now I do!
Those are the only tests I've had... so like not crazy high numbers but I had really terrible symptoms - not being able to breath, hoarseness, numbness all over my body esp. in extremities, tiredness, etc.
We can all react differently but the main thing is they are looking after you. I stated out on NDT from the NHS over 30 years ago but eventually a prolonged strike caused me to ask for Levo. Was in that for around 20 years but then it started to effect me and eventually went back to NDT. So yesLevo works for many. Sometimes we get posters on here that say Levo isn't working and asking about alternatives and when pressed for results they either haven't been on enough medication or something else may have been contributing-often a doctor who won't do the right tests or vitamin levels being dire. So go into medication with an open mind and shout out if you feel you have a problem and I'm sure we can help.
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