hi this is my first post on here, so I’m hoping I’m doing it right.
I just wondered if anyone can tell me if you can just stop taking Levothyroxine after only 4 months.
I didn’t have any symptoms at all before, but had a routine blood test & apparently I have hypothyroidism.
I now feel unhealthy after 4 months of Levothyroxine 50mgs so am considering stopping the medication. Has anyone else had this problem?
Thank you.
Quite a lot of people, I should imagine. But, it really isn't a good idea to just stop levo like that. It's very difficult to get diagnosed with hypo, so if you were given levo you must really need it!
Hypothyroidism is for life. The levo isn't to make your thyroid better so that you can come off it. It is thyroid hormone replacement, replacing the hormone your thyroid can no-longer make enough of. Because you cannot live without thyroid hormone. It is needed by every single cell in your body to function correctly.
You many not have had any symptoms at the time of diagnosis, but it sounds like they caught it early. The symptoms would probably have come later. Meanwhile, unseen damage could be inflicted on your heart, liver, kidneys and brain that would become noticable later.
4 months is too long to stay on 50 mcg, which is just a starter dose. You should have been retested after 6 weeks and your dose increased by 25 mcg. So, your feeling unhealthy is more than likely due to under-medication. Did your doctor say nothing about going back for a retest?
Do you have a copy of your results from the time you were diagnosed? If not, ask at reception for a print out. It is your legal right to have one, and it's very helpful to get one after any blood test. You need to know exactly what was tested and what the results were so that you can take control of your own health. We can help you with that if you give us the results and the ranges. 
thank you for your reply, I have been retested after 3 months & was told all was good with the brain, whatever that means, he told me I didn’t need to up the dose & he will see me again in December.
I know nothing about hypothyroidism, apart from what I have learned through good old google & a lot of that is contradictory 🙄, when I was retested it the results came back with enlarged white blood cells, he asked me if I ate a lot of broccoli, which I do, apparently that or whatever vitamins are in it was causing large white blood cells but he said you can still eat it, when I googled it, it said not to 🤦♀️.
Honestly this is the most misunderstood illness that I’ve ever come across.
Literally I was told I’ve got hypothyroidism & here’s your medication for life & that is pretty much it.
I just want to go back to feeling how I was before taking Levo.
If I hadn’t of asked for a blood test for an unrelated reason, I would never have known I had it.
good old google & a lot of that is contradictory
it is also very controlled. Try a different search engine e.g. Braveheart, DuckDuckGo
when I was retested it the results came back with enlarged white blood cells, he asked me if I ate a lot of broccoli,
Do you mean enlarged RED blood cells, or maybe raised WHITE blood cells?
The former would indicate B12 deficiency (MACRO anaemia). The latter would indicate you were actively fighting an infection at the time.
My hypo diagnosis came about when a blood test showed me to be macro anaemic - I was relieved, I thought I had very early onset dementia!
If your diet is like a rabbit, likely your folate would be elevated and (frustratingly) that is often at the expense of B12. B12 is a far from straightforward vitamin - to work properly it needs a range of co-factors, one of which is quality dairy.
Hi Blissful
How do I get different search engines, I’m not very tech savvy.
And yes it was definitely enlarged white blood cells, his words where “ it’s unusual to see enlarged white cells on someone so small…I’m 5ft 2, He then asked if I like broccoli.
I do honesty eat what I thought is very healthy , I love all vegetables & salad, I eat loads of fruit daily, I drink warm lemon water every morning, I eat probiotic no fat yogurt & loads of chicken, I drink 8 plus cups of green tea a day but have cut it down to 5 as the Dr said it was to much caffeine 🙄.
I also take magnesium supplement, oh & vit C, I know I don’t need that one but I like the little chewy pill 😂
To use DuckDuckGo, simply type "DuckDuckGo" into Google and start a search. The first hit is likely to be DuckDuckGo's own site.
Within that you could go straight to their site and start searching. Or follow the link to instructions about how to use it on your particular type of computer/tablet/phone (e.g. Microsoft Windows, Apple IOS, Google Android, or whatever).
And try the same approach for any other search engine you want to use!
ok thanks, I will be using this instead of google.
My machines are set up to use DuckDuckGo as default. But I often jump to another search engine if that doesn't find what I'm looking for.
You might find it worth a look here:
helvella's Links and References document contains many links to other organisations
A single document containing numerous links to relevant websites. With a focus on the UK it nonetheless includes many non-UK sites.
Rather than a simple list of links, there is a page (or more) per site. This is intended to provide some flavour of the site before you decide whether to visit.
helvella.blogspot.com/p/hel...
I use Firefox as default browser and fix what I want via the Settings page. I'm a regular cookie cleaner as well
I have a very strong aversion to B Gates so I avoid Bing like the plague (except occasionally when very annoyingly Firefox won't do something and Bing will!)
With Braveheart you have to download and install it - its free. My experience with it has been that it is not censored/biased like the others.
I too use Firefox as default browser and DuckDuckGo as default search engine.
But there are so many variations - for example, I mostly use macOS but also have Windows. And also have a phone that uses IOS.
Goodness FAR too much green tea. I overdosed on it a while ago and I was on.y having three maybe four cups a day. Pounding heart etc. it was horrible. Then I discovered that it should only be taken after a meal and once a day. I cut back and my body went back to normal so too much of a good thing isn’t necessarily a good thing.
I have been drinking it for years now as I don’t like coffee or regular tea, I have never had any symptoms over the years apart from maybe not getting a good solid nights sleep, I am drinking non caffeine fruit tea as well now, just to stay hydrated.
You can buy decaf green tea bags from most supermarkets. I like green tea also but normally have 1 or 2 cups a day only. Have you tried red bush tea or rooibos , very healthy but non caffeinated.
hi blissful, you were right, it was enlarged red blood cells, I have now got a printout & it says macrocytosis, I should add that I am deaf so I obviously red him wrong.
your post has made me feel so sad for you.😓
Please call your practice and get a printout of all your blood work from the last 6 months and post the results here. Then we can all help you understand them.
Hi meme
To be honest at the minute I feel sad for me because I have no idea what is going on with my body & I don’t like it, but I’m feeling a bit more positive because I’ve somehow found you lot & im so grateful to talk to like minded people 😊
I will go back to the practice & ask for my blood tests & show you lot & see what is going on.
Thank you so much
First get actual copies of test results BEFORE and most recent results too
Highly likely you need dose increase in levothyroxine
Levo doesn’t top up your own thyroid output, it replaces it
So almost everyone on Levo eventually ends up on, or near full replacement dose
50mcg levothyroxine is only the standard STARTER dose
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.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality some GP surgeries still 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.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Thank you SlowDragon, I will get printouts from my practice & post them on here, then hopefully get some good advice from you all, I have absolutely no clue what you all are talking about i.e tsh, t4, t3, so I have a lot to learn.
I unfortunately can’t afford to pay out for private testing but hopefully with help from all you lovely people, I might get a bit of understanding as to why I’m feeling like I do.
Some foods affect the way the thyroid works.
When the thyroid struggles, it tends to enlarge to try to make more thyroid hormone. This enlargement is called a goitre. Sometimes so small it is not really visible, but potentially very large indeed.
The foods that have this effect are called goitrogens.
Among the foods that are classed as goitrogens are the brassicas - cabbage and broccoli, etc.
When people are in very restricted food circumstances - starvation diets - if all they have are goitrogenic foods, then they do get goitres.
But a fairly normal intake of broccoli doesn't have a major, or indeed any, effect for most of us.
Lack of explanation is, unfortunately, quite usual.
But a fairly normal intake of broccoli doesn't have a major, or indeed any, effect for most of us.
As far as I remember, they need to be cooked.
I yearn for a good cabbage (steamed with butter and black pepper) but where I live they are not currently available. Luckily I am very patient when it comes to (my) culinary delights
Cooking is claimed to reduce their goitrogenicity.
Antinutrients: Lectins, goitrogens, phytates and oxalates, friends or foe?
Ignore all this talk of goitrogens. If you're taking thyroid hormone replacement, none of it applies you you. Why? Well...
* goitrogens impede the uptake of iodine by the thyroid, which is why the thyroid enlarges - goitre - hence the name 'goitrogen' - to try and capture more iodine to make thyroid hormone.
* If you are taking thyroid hormone replacement you are getting extra iodine because 100 mcg T4 contains about 65 mcg iodine.
* If you're taking thyroid hormone replacement your thyroid won't be making any hormone itself so it doesn't even need iodine. So it doesn't matter if not much iodine is getting in there. But...
* what nobody ever says is that you'd have to eat one hell of a lot of goitrogenic food over a long period of time for it to have that effect.
Everybody talks about broccoli and Brussels sprouts, but the list of goitrogens is far, far longer than that: walnuts, almonds, strawberries, pears, onions, garlic, peas, beans, etc. etc. etc. Do you cook your strawberries? lol Forget goitrogens, it doesn't apply.
OK, so the most important thing to do now is go to the surgery and ask for print-outs of all your blood tests so far. It's absolutely crucial to know exactly what was tested and exactly what the results were because doctors have zero skills when it comes to interpreting blood test results. They just don't learn about it in med school, just as they don't learn about thyroid and they don't learn about nutrients. You have got to be pro-active if you want to get well, and this is the first step: blood test results!
As for symptoms, there are over 300 known symptoms of hypothyroidism, far more than your doctor is aware of. Most of them you wouldn't even associate with a thyroid. But, as I said before, every single cell in your body needs thyroid hormone to function correctly. So, if there's not enough to go round - and that's what hypothyroidism is - you can get symptoms anywhere and everywhere.
Also, it is quite usual for new symptoms to appear when you start taking levo. That does not mean you don't need the levo, it just means you're not taking enough of it. Yes, your doctor said you didn't need an increase in dose but I doubt he knows the first thing about thyroid. Very few of them do. I had one doctor tell me my TSH of 9.5 was perfectly normal, when a normal TSH is around 1! We have to keep on our toes with this disease, I'm afraid.
Thank you greygoose, I will be requesting the printouts today, so hopefully I will post them soon, I will now continue with my Levo,
Also can I ask the Dr to refer me to an endocrinologist, I want to learn as much as I can, I need to know about food & stuff like that .
Well, you could. But I wouldn't advise it. You probably know more than most endos already. Endos are almost 100% diabetes specialist who haven't a clue about thyroid, but have a few weird ideas of their own. They can really mess people up. And, they certainly don't know anything about food! No doctors do. You'd be far far better off asking your questions on here and then advocating for yourself with your GP.
ok that makes sense to me, as the Dr’s don’t seem to know much. I’m so happy & more positive since I’ve found you lovely people.
As soon as I have my blood printouts I will post here & hopefully I can understand this condition a bit more, if by any chance you all think my dosage is too low after reading the bloods how do I go about asking the Dr to increase it, I’m guessing they won’t like being told to increase it, I just want to know my rights really.
Quite frankly, the patient doesn't seem to have any rights where thyroid is concerned. They need reminding that they are there to advise, not to dictate. Insist on discussing it in an informed way, explaining your reasons for wanting an increase.
There is no one magic formula for getting the doctor to increase a dose. It depends on the doctor and his understanding, knowledge and flexibility. If he's going to start bleating about having gone to med school for x number of years so he's the expert, ask him how many of those years he spent learning about thyroid.
ok I have now got a printout, I’m not sure wha I am looking at but my first test says, this is in March btw,
Serum free T4 level- HANK7998 - low 9.1 this result is consistent with primary hypothyroidism
Then the retest in June after 3 months of Levo 50gms says
TSH Level normal 3.6
Serum vitamin 12 is 294
Serum folate 43.5
Does that make any sense to you at all.
That was quick! You didn't just get them over the phone, did you?
OK, so An FT4 result without a range makes no sense at all. Ranges vary from lab to lab so we need the range that came with your results. Usually in brackets after the result. It says 'low', and we have to believe that. But we need to know how low - 15% through the range? bottom of the range? below range?
No TSH result with that?
So, in June... A TSH of over 3 is NOT normal. A normal (euthyroid) TSH would be around 1, never over 2, and at 3 your are hypo. So you are still hypo on 50 mcg levo. You need an increase. I don't doubt it's in-range, but the ranges are rubbish for TSH.
No FT4 with that TSH?
Your B12 is dangerously low. In fact, at that level, they should be testing you for Pernicious Anemia. But I believe you are vegetarian, aren't you? That would explain it. Did no-one ever tell you there's no B12 in veggies, and vegetarians should always supplement B12.
Your folate is high. This might be explained by a vegetarian diet, but did your doctor not question it?
god this is so confusing, I’m not a vegetarian I just love all veg, I eat loads of chicken mainly but I do eat all meats & also plenty of salmon but i love spinach & I eat a lot of peppers, all colours, so yes I do eat loads of varied veg.
I went to the drs practice & spoke to a lovely receptionist & she printed it off for me. Yes it’s very vague & I’ve added it for you to see because I haven’t a clue.
OK, I see, so that makes more sense.
Yes, your B12 is serum and the range is 145-569. So, yes, it is much too low.
Your folate range is 8.80 - 60.80 (which is rediculous! but never mind) so it's not as high as it at first appears without the range.
The FT4 of 9.1 has a range of 12 - 22, so it's well below range! So, yes, you were very hypo when you were diagnosed. Funny there's not TSH result with that.
Anyway, as I said, the latest TSH is in-range but much too high. It should come down to 1 or under, so you are under-medicated and need an increase in dose urgently.
ohhhh thank you so much, I can’t believe this makes sense to you, I will be booking a drs appointment….next week hopefully as they’re not taking face to face until 1st August 🙄
So this is why I’m feeling rubbish, bloated, uncomfortable, tired & I seem to shed more hair of late.
I expect it is, yes.
Honestly, you'll soon get used to interpreting your own blood tests. It's not really that difficult. Just a question of habit, really.
Passionfruit. I thought levo was making me I'll so I tapered it down but didn't quite stop it. After 3 months on 25mcg per day I became very very ill and very hypo. It has taken me years to recover. I ended up housebound for 2 of those years Now I know more about hypothyroidism, learnt from this site, I realise that the reason I felt so I'll on levo was because I was never on a high enough daily dose. This is despite spending years reporting symptoms to my consultant. I know know said consultant was well meaning but ineffective at the job. They were happy to with my TSH being at the top of range 4.75 and ft4 low in range. I now know that these results signal undermedicated.
You need to get copies of your blood results and see exactly what is what with your thyroid hormone levels and what led to your hypo diagnosis before you decide whether or not to stop levo. Otherwise you risk making yourself very ill like I did. That's a t-shirt I don't want anyone else to get!
Hello Lalatoot
I will be going to my practice to ask for my blood print outs & will post on here, hopefully everyone can explain all the jargon to me.
I had a full blood test done beginning of the year for an unrelated reason & at my request, basically I had a rash on my leg…which has now completely gone, with anti histamine but it came back under active thyroid, I was asked if I had suffered a long list of symptoms, which I hadn’t, my weight is normally between 8st 9/8st 11, so I’ve had absolutely no signs at all, but now after 4 months of Levo I feel bloated & tired & yup all the symptoms they asked me about I now have, that’s why I want to come off it & go back to pre blood test, ignorance is bliss.
It is usual on a 50mcg starter dose to feel worse. This is because the struggling thyroid and the endocrine system which are overworking to produce enough thyroid hormones, rebalance in response to the oral hormones you are now taking. However, the body's reduction in hormone output is often more than the amount of oral hormones you take on the initial dose so you end up worse with more symptoms. This is a sign you need an increase Only by getting your results will you see what was what and know how to proceed so glad you are onto the case
ok I will definitely be getting the printouts, then hopefully I can get to understand what is happening to me.
Thank you so much for this advise
ok I have now got a printout, I’m not sure wha I am looking at but my first test says, this is in March btw,
Serum free T4 level- HANK7998 - low 9.1 this result is consistent with primary hypothyroidism
Then the retest in June after 3 months of Levo 50gms says
TSH Level normal 3.6
Serum vitamin 12 is 294
Serum folate 43.5
Does that make any sense to you at all.
If you would like folks to give share their knowledge with you out this up as a new post and then you will get more info and links to nice guidelines which are what the doctor should use as a guide.The first thing folks will ask for are the ranges. After each result in a printout there should be numbers in brackets. The range is the idea of where a result should fall and they vary between testing labs so knowing the range helps get your results interpreted.
What I will say is though that whatever the range the NHS nice guidelines correctly suggest that on levothyroxine your TSH result should be under 2. On here we advise nearer to 1. Any higher suggest you need more levo .
B12 looks low which will add to your symptoms but need the range to confirm this. If the usual sort of range applies we are looking for a result of 500 to feel well.
Best thing to do is to do a new post and read up a lot. It's not too scientific but it is important. We are on here because we have had to learn about thyroid to push for the doses and treatment we need
Honestly I don't think levo is your problem. I think you are hypo and need more levo and to supplement with the vitamins that are low.
this is my printout, there doesn’t seem to be ranges or maybe I just don’t know what I’m looking at.
The ranges are the last column where it gives 2 numbers separated by a dash eg 12 - 22.You've had a lot of useful links and advice in the replies. Hope it helps. Do take time to read up and learn as it we have found you need to be proactive in getting appropriate treatment.
Thank you, I’m certainly learning now. 😊
So .... firstly , those results do not give us enough information to asses if your diagnosis was correct .. there is just one low fT4 result before starting levo ... to diagnose hypothyroidism (as opposed to a 'one off' hypothyroid looking result from some other casue) , they have to do a repeat test a few weeks / months after they find the first out of range result , There would usually be two TSH tests done , and sometimes fT4 . The fT4 result is definitely below range , but they ought to have had more evidence than that to diagnose hypothyroidism and prescribe levo . So to put your mind at rest , check if they did any other thyroid tests before these ones . (you are looking for "TSH" and "fT4/ Free T4" results )
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
March :
Serum free T4 level 9.1 LOW this result is consistent with primary hypothyroidism
June : (after 3 months of Levo 50mcg)
TSH Level 3.6 NORMAL
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So they haven't given you the ref. ranges , but we can see that the fT4 level was definitely below range because they have written LOW on it . (Reference ranges are usually found after the result in brackets for example fT4 9.1 [12-22] but there are lots of different ranges , so you always need to know which range was used for your test. In future when you ask for any result, always check they have included the Ref. ranges)
The TSH is now 'normal' (meaning it is within the lab range) ~they haven't retested the fT4 this time .. but even though the TSH is 'within range' we know from experience that 3.6 is higher than ideal ..... it is much better for GP's to aim to keep the TSH in the lower half of the lab range .. and a dose increase is the way to achieve this.
TSH(Thyroid Stimulating Hormone ) is a message from the brain to the thyroid asking it to make more/ or less Thyroid hormones (T4/T3)
When the thyroid is not making enough T4 for the body's needs , the TSH rises to ask it to try and make more T4.
if the thyroid is unable to make more T4 , the TSH continues to rise and the fT4 continues to fall, and you get diagnosed hypo and given replacement T4 (Levo)
Levo increases the T4 level .... and as a result the TSH level falls .
TSH usually sits around 1 or 2 in the majority of healthy people, but it is common to need it a bit lower than that when on levo .....so your TSH is still a bit too high.
With TSH at 3.6, your GP should be willing to increase dose to see if to improves how you feel .....if they fob you off with "your TSH is 'in range' now so you're fine" ~ you can use this list of references to persuade GP to offer a 'trial' increase Levo dose to 75mcg.
Some are taken directly from GP's 'update' resources , so there should be no argument about thier validity,
All of them recommend GP's keep TSH between 0.4/ 0.5 and 2 /2.5 in all patients on Levo : healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-in-range-
This post will hep you understand why TSH 'somewhere in range' is not the same as 'optimal' : healthunlocked.com/thyroidu... /explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy
Hope that helps you get your head round a bit.. i cant help with the vitamins, so will leave that to others .
thank you for this informed post, I have made written notes to take to the doctors, since posting on here I feel a new strength to fight this & get what’s right for me.
Hi all.In this group people want you to be very specific. So saying apparently I have hypothyroidism won't help to help you. You must give us your TSH and talk about your symptoms..
No do not stop meds. If you're hypo you'll start to deteriorate and there's nothing to change that, you'll have pains for example. Sorry I gotta go to sleep
Hi Passion Fruit! I've been a hypothyroid for about 30 years now and have tried everything to feel better, including stopping my medication. I felt better during a week or so but then I became very ill. So unfortunately that is not going to bring you the relief you're looking for.
If you're still symptomatic, it's most likely your dose need to be adjusted like some other people said. This is in the NICE guidelines: '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.' Perhaps you could email your GP and include the NICE guidelines.nice.org.uk/guidance/ng145/...
I'm not as knowledgeable as some people here in the group. But I've learned a lot in the last years and have my personal experiences. And one of them and that struck me very hard when I moved to the UK from Brazil, was brands of levothyroxine here. They really messed with me. Firstly I was prescribed mixed brands to compound my dose and after I realised that I was very ill for that reason, I tried different brands, but unfortunately they don't agree with me and have to source my old brand Synthroid so I have a "normal" life. That improved my symptoms a lot but have never been the same again. I'm hoping I'll feel better with a combination therapy I was offered recently.
Try sticking to the same brand of levothyroxine every month. Some people don't feel well on TEVA, as mannitol is a filler that can upset many.
It's worth reading the new prescribing advice for patients who experience symptoms on switching between different levothyroxine products. These were the symptoms reported by patients associated with certain brands of levothyroxine or by switching between brands: fatigue, headache, malaise, anxiety, palpitations, pruritus, nausea, myalgia, dizziness, arthralgia, feeling abnormal, alopecia, depression, abnormal weight gain, and insomnia.
gov.uk/drug-safety-update/l...
I’m not sure how brands work, I’ve been taking Levo mercury pharma for 4 months, but this time I picked up my prescription & it was a different box altogether almus pharma, so will it be different do you think, should I insist on the mercury pharma ones, it’s so baffling but I want to do the right thing.
Independently of the need of a dose increase, I'd strongly recommend that you ask to have always the same brand and never mix brands when there's the need to compound your dose. You can print the guidelines on levothyroxine: new prescribing advice and ask the pharmacist to help you. They usually are helpful. You can also ask GP to leave a note under your prescription. How were you feeling on Mercury Pharma? I had lots palpitations with it, but each of us react in a different way.
yes they give me palpitations as well, but tbh I thought that was part and parcel of Levo, do you think I should maybe try the Almus pharma & see if it’s different, and is it advisable to stick to one pharma or just go with whatever the pharmacy gives you?
It could be both you need a higher dose or the medication. in my case I knew it was the brand because my thyroid bloods were in range. I think it could be a good idea to try Almus, you have nothing to lose. But try not to be switching from different brands.
is it advisable to stick to one pharma or just go with whatever the pharmacy gives you?
Like I said before, you can print the the government new guidelines regarding the prescription of levothyroxine if the pharmacy refuses to dispenser the same brand and can also ask your GP to put a note under your prescription stating the brand that best agrees with you. I've sent you the link above, but I'll copy here for you again: gov.uk/drug-safety-update/l...
I have palpitations on mercury pharma, I also get quite hot, but I am menopausal or maybe I’m through that now,it’s difficult to know really specifically with hypo now in the mix. Also I might try Almus pharma for a couple of months just to see if it’s a better one.
Sounds like a good plan. But meanwhile talk to your GP regarding an increase in your dose. Mention NICE guidelines nice.org.uk/guidance/ng145/...
Also insist on a full thyroid panel including antibodies, vitamins (folate, vitamin D, ferritin and B12) and hormone panel as well.
Thank you & yes I will, hopefully next week when I manage to get an appointment. I won’t be leaving there without an increased medication.
And is that pronounced NICE or do I say the letters N I C E, I’ve never heard of it.
yes, it’s NICE. Just say something like this: This is in the NICE guidelines: '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.'
Here is the link I also sent you in my first message: nice.org.uk/guidance/ng145/...
You can either print it or take notes on what to say. But I recommend that you read both Government prescription guidelines and NICE. I’ve sent you both. The more knowledge you have, more you can discuss and join to make decisions about your health. Take care!
Thank you so much, this is very helpful & im going to get them printed 😊
Almus is a packaging name owned by the Boots group. The product will be Accord levothyroxine.
(For some medicines, Almus change supplier quite regularly. But, so far, they have never changed for levothyroxine.)
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
I agree with what others have said, 50 mcg is a starter dose and you should be tested every 6-8 weeks and raise it by 25 mcg until your TSH is 1 or lower. When you go on levo, your body senses the extra thyroid hormone and produces even less hormone than it did before. 50 mcg is not going to make up for that lost production. Levo replaces your thyroid hormone, it does not complement it (my own experience is that many doctors mistakenly think you can just add a tiny dose of levo and your own thyroid gland will miraculously start working again).
My guess would be you are both undermedicated and suppressing whatever thyroid function you have left, meaning you end up even more hypothyroid than you were to begin with. That is the very reason we are supposed to raise levo at regular intervals until we find the right dose for us.
thank you for this information, I am taking notes & will be making an appointment with the Dr for next week, when I first went on to Levo 50 (March 2023 ) they told me I needed to be on it for 3 months before they would test again, can I ask to be tested more regularly.? When I did go for the 3 monthly retest he said my TSH level was normal at 3.6 & wouldn’t be tested again for a year, but then changed his mind to 6 months, bearing in mind that this is all new to me so I’m like yaaay everything is going good, little did I know that 3.6 is not normal at all & im feeling rubbish, where as before I had the initial blood test for something unrelated, I had no symptoms whatsoever & was tempted to stop Levo & go back to how I was initially, I hope this makes sense to you.
A TSH above 3 is too high. People with healthy thyroid glands have a TSH below 2, and most people on levo feel best when their TSH is around 1 or lower. And it´s usually recommended to retest every 6-8 weeks until your TSH is 1 or lower. So yes, they should test you more often, and you should not accept a TSH above 2 in any case. Has your doctor only tested your TSH, or also FT4? Ideally, your FT3 levels should be tested, too, to know how well you convert T4 to T3, but it seems many patients have to order private tests in order to have a full thyroid panel done.
PS. Has your doctor tried to find out why you are hypo? Have you had antibodies tested for autoimmune disease?
Nope to all of those questions, I mean why do people become hypo, I’ve always eaten healthy, I love all fruit & vegetables & lean meat, chicken mainly, I was 8st 9/ 8st 11, gone up to 9st since taking Levo, I’m relatively fit. So yes you’re right, he should be looking into these things.
Most hypothyroid people have autoimmune thyroiditis (aka Hashimoto´s disease). As far as I know, it has nothing to do with lifestyle. Many claim you have a genetic predisposition. So, your doctor really should order these tests.
ok, that’s something I do want to find out, thank you & will ask the doctor when I go.
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