Hi I have recently been diagnosed with an under active thyroid along with several vitamin deficiencies. I am on 25mg levothyroxin and supplements for the deficiencies. I feel worse now than I ever have done. I am exhausted all the time. I work in a school and have had two weeks off for half term. I have just about made it through work today but have come home shaky and exhausted I have done the bear minimum at work. Is it normal to feel this way and will I continue to be like this until the medication is right ? I had a meeting with the management today to explain how I am feeling they were very supportive. However they suggested that I could be signed off work but as I don’t know when I am likely to feel better I am reluctant to do so. Is there anything I can do to help myself with this or is it just a matter of time ?
Thanks for any help
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Mst27
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If you are going to get paid I would take the opportunity to have time off work. It can take a long time to reach your optimal dose of Levo and although there will be gradual improvement it may take months to feel well. Taking some time off now will help you over this difficult first few weeks.
A starter dose of 25mcg is usually given to children, the elderly or those with a heart condition. Unless you have a heart condition you don't fit the other criteria so you could have been started on 50mcg.
The 25mcg dose will start to shut off your thyroid's own production of hormone, but it's not enough to replace it and then give you the extra that you need.
How long have you been on this dose? You should be restested after 6 weeks and then have an increase in dose - 25mcg. Then every 6-8 weeks you should be retested and have an increase of 25mcg until your levels are where they need to be to feel well. By "levels" we mean FT4 and FT3 but most doctors just look at TSH and this is wrong and keeps so many people unwell.
The aim of a treated Hypo patient on Levo only is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
TSH is a pituitary hormone, not a thyroid hormone, and only the thyroid hormones - FT4 and FT3 - can tell us our thyroid status - unfortunately doctors don't seem to know this.
You have vitamin deficiencies too which obviously cause symptoms of their own.
Do you have your test results? If not do you have online access to them - this should be available in England but isn't always. If you don't have online access then ring the surgery and ask the receptionist (not the doctor) for a print out of all your results. Then post them on here, along with units of measurement for Vit D and B12, and tell us what you are taking for them and the dose.
Ideally you will have had Vit D, B12, Folate and Ferritin tested.
Welcome to our forum, and 25mcg dose of levothyroxine is very small and is usually an incremental dose, unless someone is quite frail. We take it with one glass of water on an empty stomach and wait an hour before we eat.
When your next blood test is due, always make it the earliest possible and it is a fasting test and refrain from taking levo until after the blood test. We take levo with one glass of water and wait an hour before eating. Food could interfere with the uptake of levo.
Reading other members' pots will soon give you an idea how some of us can recover our health. despite the doctor's attempt.
Always get a print-out of your results, with the ranges for your own records and post if you have a query or would like members to comment upon them.
Levothyroxine is also called T4. It is supposed to convert to liothyronine (T3) and it is T3 that's the active hormone needed in all of our T3 receptor cells and heart and brain have the most.
No! It is absolutely not normal to live like that, it will improve...given time.
You need to be adequately medicated in order to make you feel better and your medics need to understand this. Many of them are fairly clueless!!
I suggest you see your GP asap, explain that you are not coping and ask for an increase to 50mcg...since 25mcg is a low starter dose you should be able to cope with 50mcg sooner than waiting for 6/8 weeks after initiation of first dose.
However, we really need to see your labs to know what is going on and to work out what is best for you.
I understand how demanding working in education can be, especially during covid ( one son is a head of a computer science dept and working his socks off!!)....be kind to yourself and listen to your body.
We're all in this thyroid mess together, so come back as often as you need support and members will help you through this journey until you recover.
Thank you for your replies. My husband said I was slurring my words when I came home from work and said he was concerned that I was considerably worse than when I was diagnosed. I goggled and it led me to an article that talked about being over prescribed. I dismissed it but then checked my medication and the pharmacy had given me 75mcg instead of the 25mcg. I have been to the pharmacy who was very apologetic but I am unsure now if I should take the 25mcg tablet tomorrow or leave it for a day. My blood results were
Free T4 11.5 (11-21.2)
TSH 6.94 (0.27-4.20)
These were from the 15/10 and I have another blood test booked and a follow up appointment booked for later this month.
It's probably exhaustion due to undermedication that is making you slur....sometimes at the end of the day I couldn't think straight and talked rubbish, when I was badly undermedicated! If it was the 75mcg it will settle again. Levo has a half life of approx 7 days.
Your FT4 is abysmally low you need to aim for roughly 75% through the ref range. Your result is sitting at only 4.9% through the ref range.
TSH at 6.94 is far too high when medicated it should be close to 1
You are seriously undermedicated and will need to raise your levels by 25mcg every 6/8 weeks after testing until you feel well again.
Also very important....vit D, vit B12, folate and ferritin need to be optimal for adequate conversion of T4 to T3 and for good thyroid function.
Suggest you read and learn from reliable sources about hypothyroidism....knowledge is power when discussing thyroid function with medics!!
I'm shocked that your pharmacy prescribed wrongly, a mistake like that could have serious consequences. It won't do you any harm fortunately, although it may have made you briefly a bit " wobbly". but I agree, in your shoes I'd skip the next dose then continue on 25mcg until you get an increase.
Hopefully tomorrow is a better day....it's early days still.
Thank you for your help. I have had a good cry I just feel so overwhelmed and useless to my family and the kids at school. I hate letting people down and just want to feel better. I know I mustn’t lose hope but it’s a lot to take in.
I remember feeling like that... but as regards "feeling useless and letting people down" ....
Be as kind to yourself as you would be to person who had just collapsed on the floor at the end of running the marathon.
Be as kind to yourself as you would be to a person who you found wandering in Nepal was suffering from early hypothermia, mixed a touch of altitude sickness .
(i'm not just plucking extreme examples for effect ... i've been hypo ,and i've observed people closely in both these situations .. and they are more similar in effect for the person suffering from it than you'd think )
Both of those people's body's would look just fine .. even look normal ,,, but you wouldn't expect them to be able to cook dinner ... in fact there would be people with blankets running over to sort them out..
Once you eventually feel better, you'll realise that most of what you have managed to do for the last several months (if not years) has actually been a heroic effort ....
So , Be kind to you ... (cos no one else will .... unless it happens to them , they all think 'hypothyroid' is a mild problem that is 'easily fixed' )
And believe you will feel better again .... .. but accept that anything to do with thyroid hormones usually takes weeks and months, not days and weeks , to go wrong ..... and also to get it better again .
I think most of us have felt overwhelmed at some point...and it feels dreadful!You are going to be OK now, it will take time, so be prepared to sit it out.
Your journey to recovery has begun...we're all here to support you.
I felt the very same as you, couldn't function every day getting up was hard work, I also slurred my words and forget what I'm saying, I have come along way, over a year, so this will take you a while to start to feel a bit normal.As someone said lots of things to get tested for in your bloods.. 6 to 8 weeks retest, the vitamins are important too.
Look after yourself and check in from time to time this site is amazing with very knowledgeable people, certainly has helped me 😁
Just seen you have been given Teva brand. I was taking Teva brand for years and it was doing me no good at all. I changed brands to Accord in 2019 and felt much better on that, though it doesn't mean that you will feel worse on it.
But best to be aware and consider asking for a different brand maybe?
Starting on too low a dose can (as you have found) make symptoms worse
Levothyroxine doesn’t top up failing thyroid, it replaces it
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2
Most people when adequately treated will have TSH around or under one
Likely to need several further increases in levothyroxine over coming months
Which brand of levothyroxine are you currently taking
Have you had vitamin D, folate, ferritin and B12 levels tested yet
If not get these tested and thyroid antibodies tested at next test
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Thank you for your reply. My results for ferritin 21 (12-150)B12 195 (197-771)
Folate 2.8 (3.0-20.0)
I have been prescribed folic acid and vitamin b12
I can’t find vitamin d results on the test but was told by the doctor to take 2000mcg a day which I am. He also said that my iron levels were low but that supplements can be unpleasant so I should increase this through my diet. The brand of levothyroxin is Teva. Also I would have eaten and drank before the first blood test as I wasn’t told not to.
I am going to try to get an appointment with the gp tomorrow to ask if he can include the other tests on my next blood test and ask about the dosage. Although he did tell me that I had autoimmune hypothyroidism when he diagnosed me. The only test on the thyroid section were for TSH and T4. I assume I would still need the antibodies tests to be checked.
Can I also ask where you say that it is not a top up but a replacement does that mean that I am not producing any of the hormone on my own when I am taking the levothyroxin? If that is the case will dropping down to 25mcg (the prescribed dose) from the mistakenly given 75mcg mean that my symptoms will worsen before the next blood test and review ?
Sorry to keep asking questions and thanks again for all your replies.
My results for ferritin 21 (12-150)He also said that my iron levels were low but that supplements can be unpleasant so I should increase this through my diet.
I believe your GP is being negligent here.
According to NICE a Ferritin level below 30mcg/L confirms iron deficiency :
Serum ferritin level is the biochemical test which most reliably correlates with relative total body iron stores. Low levels indicate low iron stores except in women who are in the second or third trimester of pregnancy.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
You should be treated accordingly not told that supplements can be unpleasant, at least he could let you try them and make up your own mind, there are options if iron tablets aren't tolerated.
Can I also ask where you say that it is not a top up but a replacement does that mean that I am not producing any of the hormone on my own when I am taking the levothyroxin? If that is the case will dropping down to 25mcg (the prescribed dose) from the mistakenly given 75mcg mean that my symptoms will worsen before the next blood test and review ?
As soon as we start on levothyroxine, the pituitary “sees” the levothyroxine dose in blood, TSH (the message to tell thyroid to work) starts to reduce. This reduces the amount of thyroid hormones your own thyroid makes….so unless on high enough dose, you actually get more hypothyroid
Standard starter dose of levothyroxine is 50mcg
It takes 6-8 weeks for each dose increase to have full effect
TSH is relatively slow to react to each dose change. Typically it takes 2-3 weeks to start to see improvements, then, symptoms begins to return as your body gets ready for next dose increase
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Hypothyroidism is extremely common, there are over 2 million people in U.K. prescribed replacement thyroid hormones…..but many GP’s are clueless as to how to manage condition
Many think it fine to start patients on too small a dose, or leave them languishing on 50mcg or 75mcg for years
ALWAYS get all future testing done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Oh heck! Here we go again - another clueless GP masquerading as an expert. They can be great on many things, but as you are discovering and I did (eventually) they are (bar the odd exception) clueless about the thyroid.
If you take the advice here and read others experiences, not just get answers to your own questions, you will quickly get a ‘handle’ on the situation. You really DO have to get genned up if you simply trust the GP you are under you will be ill for a long time. You have to be your own advocate.
I am neither a child or over 60 with a heart condition. I too was started off on 25 µg of levothyroxine and left on it for 6 months, a non-functioning zombie only able to drag myself out of bed by lunchtime, then exhausted for the rest of the day for having done so. The GP started me on too low a dose - I should have clocked it and alarm bells should have rung, but I was hypo and brain fog had descended.
GP seemed to think she was ‘topping’ me up, rather than working on getting me on a full replacement dose and also working off the wrong range when reading lab results, and not competent to interpret them AND more focused on labs than my symptoms. The Endo she eventually sought advice from told her the range on the lab print outs was wrong and gave her another range to work from.
Seems ludicrous that these issues are being dealt with by GPs who haven’t been sufficiently trained to be competent. I’m on 150 µg of levothyroxine now and it does seem to be working. I have had to fight for every dose increase different GP each time - last one was great.
I had to read-up to fight for my treatment. Sad situation all round really.
GP’s I have come into contact with bar the last one, seem to lack critical scientific thinking. They are given an over inflated impression of their limited knowledge and indoctrinated in you only need to consider TSH and free T4. Oh if only it were that simple…….
Some of us are only just in range, or don’t fit into the NHS streamlined ranges at all. Statistically speaking many of us are outliers - outside of the range, but still relevant.
There is a dearth of knowledge in regards to thyroid diseases with many endos too, so if you ever need referring please come back to the forum - apparently most are ‘into’ diabetes (not the thyroid).
Top tip! You can feel when a dose increase is kicking in - fog clears - that’s the time to focus on getting genned up - that’s what I did - I’ve still so much to learn but I can hold my own now with the GPs and it doesn’t take long to overtake them. But the most important thing which they generally overlook is symptoms they are too focused on the labs.
Get private tests. I do, and it really helps to get a handle on your health.
NHS blood test = Medical Catchphrase (reference to game show) 😂
Took me nearly 50 years ( yes 50, since I first suspected something was far wrong and all tests etc were negative!) to discover that I have a form of thyroid hormone resistance/ tissue hypothyroidism which was slowly drawing me to a halt.
Endo thought I was talking nonsense!
This amazing forum and a supraphysiological dose of T3 saved me...in my 70s!
We here are the tip of the iceberg- many accept their fate some in full knowledge they are not receiving adequate treatment, but too scared to challenge 😢
I’ve dipped into a lot of material supplied by this amazing forum. I’ve also read ‘be your own thyroid advocate’ which gave me a good foundation on which to build. Some bits take a bit of time to read- but repetition- me and knowledge are like a wall and mud - keeping chucking and eventually it sticks! 😂👍
I’d order a private blood test to see where your tsh t4 and T3 levels are (assuming you’ve been in this dose for 6 weeks) and if they’re not high in range I’d be asking for a dose increase, mentioning the continued tiredness. But frankly when I was in the same situation, I called doc and requested I go straight to 50 as almost no adult is ok on 25… then do your tests after six weeks and see if you need a further increase.
I found it difficult at the start on 25mcg. But stick with it. I’m now on 75mcg and feel sooo much better. I think I still have more increases in the pipeline. Read as much advice on this group as you can. Be your own advocate with your GP. The very knowledgeable people on this group have educated me and I couldn’t have got this far without them . Hang in there 😍
The wonderful experts here will correct me if I'm wrong, but I learned from this site that NICE recommend a starting dose for most hypo patients (not elderly, frail or cardiac) to be 1.6 mcg of Levo per 1kg bodyweight. So approx 80mg for a 50kg person, 95mg for 60kg, etc. Seems to me that if you've been on 75mg for a few weeks it will make you even worse to drop down to 25mg. And then you'll have to increase again. And you will feel cr*p until you're getting into the right zone, and that takes some weeks (and longer to really stabilise) but chopping and changing up and down can make you feel rotten for a long time. Talk with your GP, but maybe your mistaken pharmacist actually gave you a suitable starting dose.
The current NHS guidelines suggest the dosing at 1.6 µg per kilogram of levothyroxine. That’s going to take a few years to trickle down if my experience is anything to go by. The GPs at my surgery routinely said to me whilst I was pushing to get a dose increase (and getting it) - See you in three months. Not for any reason as far as I can see as I was becoming hypo long before the three months was up. These timings are arbitrary and may be based on blood tests, but not on symptoms 🙄
The pharmacist incorrectly dispensed 75mg a day instead of the prescribed 25mcg a day. OP came back and explained that above. She's now talking about dropping her dose down. Having got this far though I'd be tempted to take a few weeks off (as offered by her school) and stick with the 75mcg. It's never likely to be too much, so she needs time to get used to it. If she sticks with it she will have cut the corner off getting from 25 - 75 which would normally take months.
I’ve just got full access to my GP test results via the nhs app and a call to the GP reception for ‘access to coded health record’, which she did immediately. Considering the basic info I’d been given, the tests done are actually really thorough.
Hi Mst27. Don't despair. Just be patient. I was diagnosed 30 years ago with under function of thyroid gland, and was started on 25mcg. After 3 weeks I was told to increase to 50 mcg. and had the blood test beforehand. As indicated by our administrators, you take the pill in the morning on empty stomach with a glass of water only and wait for an hour or more before having breakfast. You ought to have a blood test before each increase, and I do it 'fasting' and not having taken my pill the day before. This is the advice on this/our forum. The GPs do not require fasting etc. I must admit that I felt a lot better when I reached 75mcg and then 100mcg on which I stayed for years. You will notice the benefit of taking Thyroxine fairly soon. I remember being a nervous wreck , so tired and so irritable that I wanted to crawl into a little corner of the room. All this disappeared and I've lived a good life (with exception of all the other health issues that I have), so have courage and persevere and I hope you are in the good hands on an endocronologist and your GP.
"and I do it 'fasting' and not having taken my pill the day before. This is the advice on this/our forum".just to clarify , although i'm sure that is what you meant.. the advice is not "don't take the pill the day before" it is to 'take the last pill 24hrs before the blood test ...'
( just in case Mst27 misinterprets what you wrote as "don't taking the previous days pill at all ' which would mean the last dose was actually more like 48 hrs from the blood test .. which would definitely give a 'false low' fT4 result )
I'd be signed off personally. I carried on teaching before being adequately medicated and it went from worse to worse ... hearing went, eye sight got really bad and terrible brainfog . I prepared lessons twice without realising it and couldn't remember kids' names etc etc total nightmare. Also stress made my tsh rise again around exam marking time and when doing orals. Maybe have your hours adjusted if you feel you can't be absent during school year.
Thanks everyone for your kind replies. The doctors told me to go to the pharmacy and have them replaced with the 25mcg which I did. I didn’t take a tablet today and I have felt better. Work asked me to be signed off for two weeks as they were worried about me. I have a telephone consult with the doctors tomorrow. I will start on the 25mcg again tomorrow. I have only been taking the tablets for a week and have been taking them on an empty stomach in the morning and not eating or drinking for an hour afterwards. My b12 supplements are 100mcg and I take one a day. I have bought some liquid iron supplement today and have started to take that also. I am trying to learn as much as I can, thanks to the responses here I think I understand my test results and which ones I need to ask the doctor for. I am so grateful for all of the advice and support everyone has given me. Thank you
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