Hello everyone i hope you can help me out i was taking Accord Levothyroxine for a few months but i was taken off them because i couldn’t cope with the side effects. I have no idea about the levels to be honest i don’t understand what T4 and all the other numbers mean 🤣 I had a blood test and i was put on a different brand Eltroxin 50 but can it be the tablets that are making me depressed and my anxiety is gone sky high. Am i taking to much or not enough i am going back for another blood test next week. Can one little tablet make me so anxious Thank You ⭐️
anxiety : Hello everyone i hope you can help me... - Thyroid UK
anxiety
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Thelostboys
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Buddy195Administrator
Increased anxiety has been the worst symptom of having a thyroid condition for me and it is always worse if thyroid medication or key vitamins (ferritin, folate, vitamins B12 and D) are not optimal.
As others advised in your last post, your adverse symptoms are likely linked to both thyroid medication and key vitamins not being optimal. The 50mcg Levo you were prescribed is a starter dose, and likely you will need significantly more over time. What I’ve found is that slow and steady adjustments are needed in order to ensure my anxiety doesn’t flare.
Did you ask for a copy of your previous thyroid blood tests?
What time is your next blood test planned? An early morning test is advised here, when TSH levels are highest. If you are taking Levo, leave your 50mcg until after the blood draw. Try to follow this consistently in all your the blood tests.
I have no idea what the tests showed and my test is in the afternoon. I don’t think the doctor has a clue about thyroid problems i felt better when i didn’t know i had a underactive thyroid.Thank You 😃
Do ask for a print out of your previous tests, which you are legally entitled to and share with us.
I fully understand how your anxiety can flare when given a diagnosis of hypothyroidism. Your symptoms will improve when your thyroid medication is optimal….but it may take several months to achieve this, even with slow, steady increases.
Thank You ⭐️
Hi sorry I lost your reply about optimum level of vitamins we need but have found my levels on my records now or what they were in march anyway .thanks
Hi again my blood test has come back my thyroid has come back normal the only thing wrong with me was i had very low iron.So i have to go back in six weeks he has given me ferritin and iron tbs. Do i need B12 i have no idea ⭐️
I’m glad that your low iron is being treated. Was B12 tested? If this is not optimal (ie high in the range), I would take a good B Complex (eg Thorne Basic B or Ingennus Super B)
As many members have suggested to you before, do ask for a print out of your thyroid blood tests and share them with us. When your GP says ‘normal’ or ‘within range’ this may not be the same as optimal, where you feel most well. 50mcg of Levothyroxine is usually a starter dose and I suspect you may benefit from an increase (although we need to see results for TSH, FT3 and FT4 to confirm).
Thank you so much but my doctor isn’t very knowledgeable and i don’t think he will have these results. I really appreciate you answering but can you please tell me if i need B12 every one seems to mention this vitamin.Thank You ⭐️
Your GP practice will have the results and you are legally entitled to them. I would not supplement B12 without having this tested and knowing/ sharing the reading.
I have to go back in a few weeks i will ask him. If it is normal i don’t have to take any is that right ⭐️
Don’t wait until then
Get copies of your test results now
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.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
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.
you need to keep good records yourself
Testing at least annually
Maintain GOOD levels of vitamins by self supplementing if necessary
Vitamin D at least over 80nmol
Serum B12 over 500
Active B12 (private testing ) at least over 70
Folate towards top of range (range usually 20 or 60 top)
Ferritin at least over 70 minimum
As SlowDragon has advised, you need to get the results as soon as possible. You could phone on Monday and ask the practice manager to send you a printed copy in the post or by email.
As I’ve explained before when doctors say ‘normal’ this might not be ‘optimal’… so share your B12 result with us, in addition to the thyroid tests.
Thank you i will phone on monday but i’m certain they won’t have a clue.
If in England politely ask to get access to your blood test results set up online
If in rest of U.K. request printed copies of recent blood tests from last 2 years
Allow 3-4 days then pop in to collect from reception
Thank you ⭐️
Hi yes I have had some horrendous mood swings down and anxiety it's not me or normal I know its the pills not correct but it affects our lives abd partners noone wants see people like it they love . I know my moods down not myself abd can't do anything about it tearful and thinking my life's over .today has been terrible .feeling chilled usually happens with it when warm inside I feel fine sorry we all have this horrible problem noobe seens to know what to do . That's the worst thing. Dr's who don't know x
I know i felt better when i didn’t know i had a underactive thyroid it is a horrible problem.How can one tiny pill make you feel so bad i wish i could stop taking them but my doctor says i can’t.I just went for a normal blood check i wasn’t poorly but the doctor said at my age (cheeky bugger) i need a blood test to confirm everything is okay. It was 🤣 not now though i can’t cope with feeling like this it’s horrible but now i know it’s the tablets.Thank You and i hope we get better soon 💞
They are tiny but can be very powerful. They can even kill you if you take too much. If I were you I would look at my labs and the numbers t3, t4, tsh and of course on how you feel. It's very important to inform yourself and take in charge your own health.
I think any tablet can be dangerous if you take too many. You’d need to take a lot of levothyroxine to kill you! That would be part of why you can be dispensed more than one packet, unlike some painkillers. The danger to most of us here would be around NOT taking our pills.
I agree. I was more thinking about t3 which is very potent, and along the line of what he said about a tiny pill being so potent.
I know how you feel. They've been telling me I needed to take thyroid medicine for decades now. But I felt fine and just didn't bother with it. Now that I'm in my sixties things have changed. Anxiety actually became a problem when it never had before. And some other health issues such as high blood pressure and high cholesterol which resulted in a mini stroke. So I decided to go ahead and try it. I am replying because your anxiety caught my attention, and I just wanted to let you know that mine is almost gone now. I credit the Levothyroxine with fixing it. But it took about a year to slowly work. I have also recently been able to stop blood pressure and cholesterol meds. Statins for cholesterol have the worst side effects. Good luck and be patient.
Thank you i’m glad you are feeling better i hope i will be soon ⭐️
I carried on taking them in past 5 years of hell I wouldn't wish on anyone after being perfectly well.all my.life .no problems feeling cold or tiredness. I then worried when had to come off them so took thyronine 2 years after and specialist didn't have a clue why I reacted so badly .but I had no choice but to come off them .and got my life back .til.walking was affected last year I never gave it a thought..slight coldness hands and carpal tunnel arthritic pains wrist hands .. j felt a lot better without than I do now being a mystery to Dr's who just want the readings correct there's nothing j would like better than to actually not be told my thyroid readings out all time as if iam negligent . I tried twice now third time is no better I don't know why guess few of us are not good with it . Hope you get better x
Thank you so much it’s not easy is it i felt 100% better before the doctor said i had a underactive thyroid and was put on these awful tbs. I just want to throw them in the bin and see what happens i was fine with out them. Now i just feel bad every single day good luck to you and myself 🤣 we need a doctor who understands i think good luck to us 🙏
50mcg is only the standard STARTER Dose Levo
Which brand of levothyroxine are you currently taking
ALWAYS test thyroid levels 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)
Testing in the afternoon will give lower TSH making it much harder to get correct dose INCREASE in levothyroxine
Levo doesn’t “top up” your own thyroid output, it replaces it
So in early stages when o only on low dose …..you can end up MORE hypothyroid
What are your most recent results
TSH, Ft4 ….ideally Ft3
Request GP test vitamin D, folate, ferritin and B12
plus thyroid antibodies if not been tested yet
Or test privately
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Hi my doctor never tells me anything only you have a underactive thyroid take these. My blood test is in the afternoon next week i have also asked for a separate one for my vitamin levels.Im new to all the vitamins ect that have to be checked T4T3 and everything else i don’t understand it.But i have learned a lot from joining this page.That is why i have asked for testing on my vitamin levels even if they come back ok do i still need to take them.Thank You very much for any advice you can give me ⭐️
My blood test is in the afternoon next week
if this is a thyroid test …..rebook for 8-9am and last dose levothyroxine 24 hours before test
That is why i have asked for testing on my vitamin levels even if they come back ok do i still need to take them.
Come back with new post once you get results
GP will only test and treat vitamin deficiencies
Down to us to maintain GOOD vitamin levels
Thank You ⭐️
I have written here several times on hypothyroid issues, mainly to do with my TSH always being 0.01 every time (apart from my initial diagnosis when it was over 100!). My GP surgery insists on using the Anima system to book blood test appointments now. My last one was at 3pm (in the past I have usually managed 9am) and, according to Anima the next available one was at the end of October again about 3pm. I took all the evidence with me when I last saw a GP, well over a year ago, about TSH being so low didn’t really matter that has been provided by you good people on this site, and, although it says on my results abnormal I have heard nothing more. I will probably have to wait until I order my next prescription to see if they have reduced my dose (I have been, happily, on 125mcg Mercury Pharma levo for years now). If they do it will be ‘fun’ trying to get a GP appointment to sort it out again!
That’s why so many U.K. members test privately
Just testing TSH is completely useless
You need TSH, Ft4 and Ft3 plus vitamin D, folate, B12 and ferritin tested
I have had the full tests done privately and the GP just ignores them! I think the problem is the lab results just say abnormal for TSH when everything else is ok, except they NEVER test T3 on the NHS, of course (or vitamins). I thought I had got through to the GP I saw with all the info as he put the results in future were to go to him. Now I have been put with a new GP!
Assuming your private test results show Ft3 is within range
Are you testing vitamin levels at least annually and keeping your vitamins at GOOD levels
Give GP copy of private test results and politely insist these are added to your medical record
And refuse to reduce dose based solely on low TSH
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
sciencedirect.com/science/a...
25–40% of patients on long-term levothyroxine treatment have a TSH concentration below or above the reference range
Thanks. My T3 was fine and the GP I saw accepted it, but it was not added to my notes. Next time, if I need to, I will make sure they are added, though even the private one commented my TSH was too low!
Don’t include the Dr comments from private tests
They are only normal GP’s paid to comment. Not thyroid specialists at all
Best to tick box NOT to have Dr comment. You get results quicker too
It should be possible to go online and get a copy of your test results so far. Most (all?) GP practices have this function.
This is not possible for those in the three nations other than England.
And is not yet universal in England.
I thought it was now a legal requirement for results to be made available. That is one of the few things my GP surgery do effectively!
Legal availability says nothing about "online".
There is no NHS app in Scotland. There is no NHS app in Northern Ireland. There is an NHS app in Wales but it does not provide access to results..
Neither is there a website that can be accessed.
If people in those nations want their results, they have to ask the surgery (or wherever for hospital results, etc.). And get them printed or viewed at the surgery, etc.
There might be exceptions to some of these things. I cannot say that there is no app or website for any NHS service (GP surgery, hospital, etc.) in the other three nations. But any such access is very much the exception and will not be through "the NHS app" (as in, the standard NHS app without extensions that might work in some special cases).
Work is going on to provide access and this might include trial apps/websites. Some other apps might provide access to results from specific NHS establishments.
Thank You ⭐️
That’s so interesting to hear. What happened to your thyroid numbers when you came off them? And what were they like before you went on the pills?
Honestly i only know i felt better without them. Then i had my blood tested again and the doctor phoned me with the results. He just said i don’t know how you are still standing we have to get you back on some tablets.So it must have been very bad i don’t want to take them but he told me it was dangerous if i didn’t go back on some. Do you know what happens he told me i could be diabetic and other things. But i would chance it i really would these tablets make me feel so depressed and my anxiety is through the roof. Thank You for asking.
I wonder if you were auto immune before you started on pills. Do you know?
Do you have copies of your Thyroid blood test results to share with people?
Sorry i haven’t been told anything about my condition.And i have no idea how low or high my levels are but thank you for asking.
SlowDragonAdministrator
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you very much ⭐️
If your TSH was high and this was the only basis for your diagnoses eg you didnt have any symptoms then I think although could have this wrong the GP should have just retested in a couple of months to see if TSH remained high. It often takes three tests before hormone replacement is started. Your GP may have jumped the gun a bit.
Hi i’m fairly new to this group and i don’t understand what TSH means i have seen a lot of people mentioning TSH and T4 what does it mean ?
TSH is a hormone that encourages your thyroid gland to produce more thyroid hormones. T4 is the storage hormone for thyroid hormones. If your TSH is higher than normal in a blood test and your T4 is low this usually indicates that your thyroid gland is failing.
Thank You .
Good Morning GreetingsBless you
I've always been informed Thyroxine is just something our body is meant to naturally have
So when we're put on Thyroxine tablets it's just to replace what should naturally be within our bodies
I know what the doctors prescribe us isn't going to be as effective as if we were naturally producing Thyroxine within our bodies ourselves, but I'm most surely have always been given the answer that it's the next best thing
I personally can't imagine being without my Thyroxine & I get Immensely upset when they try to justify lowering my dose when in actual fact it should be increased & I feel million times worse on lower dose
Hope this somewhat helps
Wishing you all the utmost very best
Thank you so much you are very lucky i feel worse and i hate those little pills. I wish i had never heard of them ⭐️
You say you feel worse, but I wonder what's actually going on inside. A long period of unmedicated hypothyroidism can progress to heart problems (e.g atheroscleroris), kidney disease, organ damage and cause so many different issues.
Without seeing blood results, there's no evidence that it's the actual Thyroxine itself causing the issues. It could be too low or too high dose, bad conversion etc.. There are some people that don't tolerate it well, in which case there's different forms of it, and different types of therapy. Lots of people feel better when stopping Thyroxine, giving the impression it's that causing the issue, but the good feeling is normally short lived before you start to have problems.
Thank you i know the good feeling is short i had to stop taking one brand because of the side effects. I felt 100% better for about five days. But i soon came back to earth with a bang 🤣
You're Most Welcome Sincere SoulIt never ceases to amaze me how unique we are despite all having Thyroid problems
I'm not really lucky though because I'm always having to challenge them whom behold power not to lower my much needed Thyroxine... Maybe it's the brand you're on? I feel so tired, sluggish & my hair is completely, unnaturally dry & falling out on my lower dose, yet they wish to lower again because of a notion they get from a reading
Ultimately surely, they should go by how a patient feels
But they don't & seem to wish to be stingy & withholding as opposed to caring about individual patients wellbeing
Maybe your team aren't being's thorough in concerns with your root causes of anxiety as they should be, you know? ☘️🙏
Hi it’s terrible isn’t it my doctor says i have to take them but i feel really anxious and have terrible mood swings because of them .This is the second brand i have been on the first one accord was horrendous i thought i was going crazy and lost a stone and a half in three weeks. I was phoning the doctor every day crying in the end he said stop taking them but come back in six week for a blood test.When the results came back he phoned and told me his exact words were i don’t know how you are still standing you have to go back straight away on tbs. It must have been bad so i’m on a different brand now.I go back next week for another test but since covid you can’t see a dr where i live how can you tell someone over the phone how bad you feel.If he had seen me face to face he would have known how bad i was. Sorry for babbling on ⭐️
Greetings & God bless youYou haven't babbled on whatsoever
It's horrendous
Yes Completely Concur With You how can they see how terrible we feel over the phone it's totally true
Like I've been on antibiotics for most of last year & this year
Because I'm repeatedly getting chest infections with the pneumonia bug & urinary tract infections
But how is it ok for them to simply fob us patients off with repeated doses of antibiotics
Surely they must twig there's an underlying problem for this to continuously occur
Please never feel you're babbling
It's imperative to open up to those whom empathise & have Compassionate insight & some enlightenments & not suffer in silence
I wish I could help more ☘️🙏
Thank you so much i will just carry on and see how things go after my blood test this week ⭐️
Natural Nutrition helped my mum, (dont read if your a veggie) ,but a high protein diet brought her back to normal red meat beef liver eggs fish, seriously , cooked in butter or lard,NO veg oils.. Dark greens ,carrots, organic If poss, always satiated..vit D & C Quality water, v ,limited carbs bread potatoes,sugar etc, try a week ..
Thelostboys• in reply to
I am a vegetarian 🤣🤣 but i am going to have my bloods checked in a few days and will be seeing what vitamins i need. I must be lacking something my diet is lacking in everything but thank you anyway ⭐️
Vegetarian are almost always low in iron/ferritin
And you will always need to supplement B12 daily
Thank you i am now taking iron suplied by my dr just waiting to ask him about B12.
Don’t ask the GP
Just get results and come back with new post once you get copies of results
It’s highly likely you are low in B12 if vegetarian and not taking B12 daily
GP will say result is normal if within very wide range
Typically range is 180-780
If result is 185 it’s “normal “…….not low enough for GP to be obligated to treat
academic.oup.com/nutritionr...
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency.
Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 at least few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
In-depth article on different forms of B12
perniciousanemia.org/b12/fo...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
perniciousanemia.org/b12/le...
And why aiming to keep B12 over 500 recommended
perniciousanemia.org/b12/le...
Great reply by @humanbean on B12 here
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Wow so much to take in i never realised how much information you need just for a underactive thyroid.Thank you very much ⭐️
Read posts regularly and you will slowly pick up knowledge
On levothyroxine we must
A) be on high enough dose levothyroxine
B) test and maintain GOOD vitamin levels
C) retest vitamin levels at least annually
Iron test 3-4 times a year if supplementing
Thank you i will i have learned so much in a few months ⭐️
helvellaAdministrator
There are many members who have found one (or more) makes of levothyroxine upset them - in varying degrees.
This is a major reason I was stirred enough to document EVERY UK licensed thyroid hormone medicine.
My personal preference - now - is for Aristo Vencamil. But others are happy on one of the other products.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
📄 dropbox.com/s/bo2jzxucgp9hl...
Thank you so much ⭐️
yes different tablets have different side effects it’s trial and error I have accord, and find others difficult to handle, they all carry the drug you need just different fillers, just take it easy you’ll get there yet.
Thank you so much ⭐️
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