I've had an underactive thyroid for probably at least 2 years but didn't start taking medication until the very end of February due to my own lack of going to the doctors when I should have and moving house/doctors. They put me on 50 micrograms of levothyroxine as a starting dose but after about 3 weeks of taking it I started to feel kind of off. Sweating loads (like loads and loads), insomnia, needing the toilet ALL the time, also super hungry all the time. After some googling I realised this sounded like an overactive thyroid so I stopped taking the levothyroxine for about 2 weeks. The symptoms kind of sorted themselves out, but now I am super tired all the time again, I'm assuming because I'm now underactive again. After reading some posts on here I'm now splitting the tablets in half so I'm taking 25 micrograms a day. I can't go to the doctor as my doctor is in Sheffield and I am currently 3 hours from there at my parents house due to the coronavirus lockdown. (The doctor also didn't really tell me anything other than that I needed to get another blood test after 8 weeks, so about 3 weeks from now). It also doesn't really seem worth it to go to a different doctor for something this small in the current climate. To be honest I don't really know anything about managing a thyroid problem, and I'm worried that messing with my medication like this is going to cause damage to me in some way. I don't have any idea what to do and any help or advice from more experienced people would be much appreciated.
Is it bad for me to be taking an incorrect dose... - Thyroid UK
Is it bad for me to be taking an incorrect dose of levothyroxine? I don't really have any knowledge on thyroids at all. Please help.
Sorry you are having such a hard time.
First of all, we´d need lab results with reference ranges (recent and older ones if available for comparison) to know if you are/were overmedicated.
25 mcg of T4 is a tiny dose, a starting dose in elderly people and very young children and those with heart disease, but if you have full-blown hypothyroidism you are not likely to do well on it in the long run. 50 mcg is the usual starting dose in people under 50, and it´s then raised every 6-8 weeks until your TSH drops to 1 or lower, along with FT4 levels in the upper part of range or at the top of range to ensure sufficient FT4 to FT3 conversion (FT3 needs to be tested along with FT4 to determine that).
What was your original diagnosis (the reason you were put on levo in the first place)? Autoimmune hypothyroidism (aka Hashimoto´s) or something else? Did you ever have thyroid antibodies and anti-thyroglobulin tested to confirm or rule out Hashimoto´s?
Thank you for your reply, I'm not sure if I can be anymore helpful with information. I don't know any of my lab results.
I went to the doctor september 2018 because I was really tired all the time. All he told me after a blood test was that I was low in the hormone and something about how my body was having to send more messages than normal to the thyroid to get it to work. I had another blood test in May-ish 2019 where I was told the same thing.
Then in the middle of February 2020 I went to Pre-Operation (needed surgery for something unrelated) and the blood test they did there came back again as me having an underactive thyroid. In order to go ahead with the surgery and anaesthetic they put me on the levothyroxine.
I don't know numbers for any of these results, only that I have been consistently underactive (I don't think its very severe I've been told I'm "slightly underactive"). I also haven't got any kind of diagnosis in the way you describe. Sorry if this isn't very helpful, I really have no idea about any of this.
Most likely, your TSH was slightly elevated and your free T4 lowish and that´s why doctors put you on levothyroxine.
I´ve read that in the UK, many doctors won´t prescribe levothyroxine until the TSH reaches 10, and by that time you´d be pretty symptomatic.
If you have Hashimoto´s disease, you´d need to have thyroid antibodies and anti-thyroglobulin tested. But Hashimoto´s does not cause low-grade hypothyroidism, it gradually destroys your thyroid gland, leaving you more and more hypothyroid as the disease progresses.
The symptoms that caused you to go off and lower levo are indeed indicative of hyperthyroidism, in your case drug-induced hyperthyroidism.
In any case, you´d need to have both your TSH, FT4, FT3 and, preferably, anti-TPO and anti-thyroglobulin, tested.
If 25 mcg is not enough for you, and 50 mcg too much, there is always the possibility to take 37.5 mcg daily. That can be done by taking 50 mcg and 25 mcg on alternate days, and the long-term effects would be those of 37.5 mcg. Or you could add 12.5 mcg of T4 to a 25 mcg pill (by cutting a 25 mcg pill in half or a 50 mcg pill in quarters).
I am afraid that I don´t know much about low-grade hypothyroidism requiring only 25 mcg of levo daily, but hope others will chime in!
Thank you so much, you've been very helpful! I didn't realise how much I didn't know about this so I think I will try to get a doctor's appointment over the phone to find out what exactly my test results etc were. Hopefully now that I know some more I can ask the right questions to my doctor. Thanks again, I really appreciate your help.
Welcome to the forum
Standard starter dose of levothyroxine is 50mcg ....but if you have been very hypothyroid for a long time, we often have to start and increase very very slowly
As you are finding 25mcg ok ......When you have been on 25mcg for 6 weeks, increase to 50mcg and should be able to tolerate ......get bloods tested 6-8 weeks after this
If you have been reading posts on here you will see that low vitamin levels are extremely common
As a first step ...Suggest you get vitamin D tested NOW ...easy NHS postal kit £29 sent to you. Post off and results emailed to you
Getting vitamin levels optimal helps be able to increase levothyroxine dose upwards
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test B12, folate and ferritin levels at next test
Do you know if you have had thyroid antibodies tested?
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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. Ask that results are printed out and posted to you
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Thank you very much that has been very informative. I am going to get into contact with my doctor as it has become clear to me that they haven't given me anywhere near enough personalised information for me to properly understand my condition and treatment.
Most GP’s understanding of thyroid disease is pretty poor. Despite almost 2 million people in UK being prescribed levothyroxine and it being 2nd most prescribed medication
Hence over 107,000 members on here
Hello. Be guided by how you feel rather than dosage. It seems 50mcg was too much to start on so stay on 25mcg. for now. Call your doc and explain where you are. Maybe call your parents’ doctors too and any chemist they regularly use and between them you should be able to discuss any symptoms and if anything changes. You’ve been researching symptoms anyway so are probably familiar with what to expect! Because you were hypo for so long you may need to build up dosage slowly anyway. How are you feeling at the moment?
Read up on the Thyroid UK web site for information on diagnosis, symptoms and treatment.
Hi there,
I really understand where you’re coming from. I’ve recently been going between 100mcg and 125mcg and keep going from being a bit sluggish to having heart palpitations and feeling way to high. My tsh was 5.4 so they told me to take and extra 25mcg...after that test my TSH was 0.5 which is obviously just to active for me to feel well. It’s in range but I know I feel jittery and so I’ve started taking 100mcg one day and 125 every other.
It’s really hard to find the right balance sometimes. I highly recommend taking some selenium and since supplements. I find these really help my thyroid function and I feel much better when I take them. You might need to take a lower dose of TSH and a selenium supplement might just boost your function enough to make you feel just right. As the others have said, it’s worth getting everything tested properly. My doctor hasn’t done that and I was never told anything other than I need to urgently take 125mcg of thyroxine because my levels were something mad like 117!! I got a call from a doctor at 6pm telling me the pharmacy was going to stay open for me to collect the prescription ha ha...anyway, it’s a long road you’re going to be on but I’ve learnt so much. I’m currently reading a book called something like “my thyroid levels are ok so why do I have symptoms?” And it’s so informative! Explains so much about diet and everything to do with the thyroid...I really recommend you read it. I’m just starting to find answers myself after 5 years of thyroxine and still not feeling quite right! I’ve recently stopped eating gluten and dairy and it’s helping a lot! Xxx
thank you so much for your reply, I am trying to do as much research as I can and I will definitely check that book out! It's very infuriating not feeling better despite taking the tablets but I am going to try out the different suggestions I've had from people and hopefully I can find something that works for me.
Newly diagnosed and feeling overwhelmed 
Help with results 
Is it safe to take an extra half pill a day for one week of Levothyroxine?
new to all this
