I only just got my results from the GP. GP agreed to test some minerals and vitamins because I mentioned I am going to do private tests. I mentioned the stomach pain with TEVA and she decided is not teva so I need a renal blood test.....(I am not on TEVA anymore)
I seriously will pay BUPA if they keep ignoring my request for an endocrinologist. Only been on levo for 4 months.
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In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
So exactly what dose were you on when this test was done and have you had an increase since the GP saw these results?
We need to see the reference ranges as well as the results (ranges vary from lab to lab) so we can't comment on your FT4 result but I expect your TSH is over range. Most people on Levo feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges.
I seriously will pay BUPA if they keep ignoring my request for an endocrinologist. Only been on levo for 4 months.
I wouldn't do that just yet, it will be expensive and you will need to do all thyroid/vitamin tests before seeing a private endo (if they do the tests it will be much more expensive than you doing them). As you say, you've only been on Levo for 4 months and it is very early in your thyroid journey. You need increases in your Levo to bring your TSH down and this can't be rushed whoever you see, only 25mcg at a time with retesting 6-8 weeks later. We can guide you on how to go forward with your GP so I would go down that route first. Also, there's no saying a private doctor will be any better than your NHS GP, actual thyroid specialists are a bit like hen's teeth!
Do as has been suggested - a private test to include the full thyroid panel including antibodies plus key vitamins. Come back with results/ranges and we can help further.
Yes I am on 75 mg since October. Gp didn't want to increase dose with November results because it sounded good she said
Well maybe she needs to go to Specsavers and read up on how to treat hypothyroidism because that TSH is probably over range and should be no more than 2.
Can you answer the question about what is the range for the FT4 test, if we know where in range that lies we might be able to comment on that.
Ok, so your FT4 is 44% through range which is low, most people are best when it's in the upper part of range. With a possible over range TSH and less than mid range FT4 there is no reason for your GP not to increase your Levo. Use the following information to support your request for an increase:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk
Btw specsavers were the ones that did my eye cataract after surgery check and send me to the hospital worrying about detached retina, only to the ophthalmologist to find out the specsaver optician made a huge mistake, reading someone else medical history 🙈 these days our health service is going ⬇️⬇️⬇️
With my experience of Specsavers over the years -just don't.
Once, my specs were sitting too high & couldn't simply be adjusted because the optician had marked the incorrect field of vision -would've meant cutting a brand new set of lenses.
More recently, at a different branch of Specsavers sold me lenses that had too narrow field of vision. I kept taking my specs back over months complaining about blurriness.
Ddidn't realise until I finally went elsewhere to OPSM where they honestly said you have a choice and can pay for three different widths of vision.
-Specsavers never once said that when I kept taking their specs/lenses back complaining of blurriness. Never, ever again.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
you look very under medicated. I’d increase the dose by 25 and retest (and see how you feel in 6 weeks) then tell doc what you did … by that stage, you’ll hopefully be able to say you feel better for it… and either want to stay on it or want to trial a further increase. (Just order your next prescription a bit early.)
I like this idea, my next blood test is on the 6th so I will wait for that one and after it if GP doesn't up my dose I will increase it myself. And will tell GP that in the next blood test. Great plan.😉
When ordering repeat prescriptions online at our surgery we are unable to put the request in before the due date. Ordering meds early is not an option for many who use an online system.
My surgery doesn't do anything online so repeat prescriptions are handed to the local pharmacy to send to the surgery or we take to the surgery ourselves for a new prescription to be issued. On the repeat form it is printed
"do not order repeat medication more than 10 days before it is due otherwise it may be declined".
So do check because your surgery will know if it's put in early and might not issue the new prescription.
we’ll there’s always the ‘i left a packet at a hotel’ excuse (and they’re not that expensive to self source). Or ‘I need some extra as I’m going away for a long holiday.’. Surprised they’re dispensed by a computer. I know mine get okayed by a Doc so there’s a space to write and explain (lie).
yup we have to be canny! In truth I do lose them all the time - drop the little things in the floor then can’t tell if it’s Levo or lio and what the number is on it! 😅
Our prescription applications are made online, but authorised by a GP or the surgery pharmacist. Each medication request has a not-before issue date noted. Yes, there is a box where specific information/requests can be given, but you cannot keep giving an excuse for additional supplies.
Yes I'm exactly in the same position I have spent most of the last ten years consistently over or under medicated never seen Endorcrinolgist not even a scan.Still suffer symptoms just fighting a losing battle
Brilliant advice here and if you read my bio you will see how it helped my journey and self advocacy.
Couple things I can add. Time periods between dose increases and when they want to see you again are arbitrary and have no basis in knowledge AND most GPs and some Endos actually are not able to interpret blood tests and think ‘drop kicking’ you anywhere between the range will do. It never ceases to amaze me.
If they understood how the range is derived and that everyone sits in a different place in the range, rather than their ignorant assumption that everyone can sit anywhere in the range , there would be a lot more healthy people in the world. I doubt their inability is confined to hypothyroidism. Symptoms are the fine tuning - oh and actually following the guidelines helps (emphasis on the’guide’).
But I would say this is a systemic problem- the medical profession becomes increasingly dependent upon scientific methods with a basic understanding of stats required - yet seemingly not being trained in these skills. Medicine and Science having been running parallel but there is an ever increasing need for overlap.
I totally agree with you, my gynecologist didn't even know the cause-and-effect relationship between nuvaring (hormonal contraceptives) and hypothyroidism... and since I knew about the subject, she asked me if I was studying medicine... and I don't, I'm a nutritionist! but it's the same I UNDERSTAND SCIENCE, listen to me! (surprise, I took a private antibody test and self-diagnosed myself ). Now I am into remission process and I want to help other women who, like me, endos and doctors ignore them.
So beautiful what you advocating for. The last few days I have been having awful stomach pain most of the day.... 🤔 I have been learning and educating myself wondering what can I eat to make my tummy happy instead of just complaining.🔥
Mivi, not sure if this would help but I noticed certain combinations of food would set me off especially a meal heavy in carb, sugar and fat - so even a gluten free version of a fruit crumble is a no-go now. It would leave me with heartburn so bad I couldn’t lay down. Doctor had routinely prescribed omeprazole - I think, like many hypos, I had low stomach acid as it made things far worse. Also if you are below par and thyroid not being adequately treated all the possible vitamin and mineral deficiencies will undoubtedly compound things.
I’m pretty sure I had a leaky gut two years ago. Terminal constipation (so bad) I was obsessed with going regularly hammered the laxatives for a good while. Not ideal🙄
Going gluten-free, working on raising vitamins and eating iron rich foods, avoiding the food combinations that triggered and of course fighting to get to a full therapeutic dose all combined to a much happier human and tum. I did lay off dairy for a good long while and even now I’m careful. Yogurt can set me off so I don’t over indulge. 😊👍
Thank you, you are so dedicated, I know my body more than when I was a teen these days. The last few days I have been taking my levo around 3/4 am coffee at wake up. Zinc n thyroid support cytoplan around 9/10 then stomach starts to hurt until evening. So today I swapping things a bit to see what is the trigger. Will report back.
Oooo eek! what is thyroid support? Could this be triggering and zinc? Are you deficient in zinc? Advice on here is only to supplement with true vitamins and minerals and be fussy on the form, not concoctions as these can cancel one another out, or be in the wrong form so not bioavailable.
If you trawl through the advice you have higher up the string from SlowDragon and SeasideSuzie this will help. A lot of vitamins have oral spray version but please read through the advice before changing too much too quickly - I read with a pen and paper as it helped me formulate my own plan..
Also probiotic’s good, but introduce what you need one thing at a time so you know what is having the effect. If you find sensitivities to certain thing you will know what caused it.
Well I had them for a while and I didn't get the pain before. I think is a combo of mercury pharma levo and the supplements, Although they are not been taking together. Anyway I will not taking them for a few days and see if that makes a difference. Previous month the pain came after teva (I am no longer taking it)
When I was in Costa Rica I was taking levo around 5 am then fresh fruit n home made juices for breakfast. That was really nourishing but I was not taking the supplements also I was on Almus. (I had never react to Almus)
Ah! So if you have a reaction to certain brands of levo you are absolutely within your rights to ask for the brand to be fixed - get them to fix on Almus if you have been well on it.
If they say the pills aren’t made in right strength to make up dose, say you will pill cut. Long half life means a grain or two in one half pill over another will not be an issue compared to brand swapping, which is fine for their convenience but not your wellbeing.
The priority is keeping you well and sometimes they need to have their heads wobbled a bit to remind them. Fixing brand is in the guidelines somewhere. Not sure if NHS or NICE.
I fixed my brand by speaking to Meds Management Team at local surgery- didn’t even have to speak to a GP. Then I doubled up by advising nominated pharmacy. They do stuff up regularly, but not frequently, so I simply open my meds at the counter then they can swap them out. If you take them away they cannot be reissued to anyone else - safety reasons and totally on point.
Not all brands are equivalent, so it doesn’t make sense to muck people about and brand swap on first principles, but sadly this is about saving money and clinical excellence has no part in the decision making- we have to push for that ourselves . The good thing is if you are aware they will concede.
Also, if the variables are reduced it is easier to see what is causing problems if we get any down the road.
Yes, thank you. Basically i did check them last time to make sure is not Teva there and gp put it on the prescription NO TEVA. Looking forward for my blood tests in a few weeks.
that’s good you checked not Teva - now for the next step to fix the brand 😊👍. And SeasideSusie really knows her stuff - and can give the detail as to why concoctions can be bad for us. 🤗👍
I think most of us responders here would urge you to rethink this supplement. It contains a lot of iodine:
Kelp - 215mg (kelp is a major source of iodine)
Seagreens providing iodine - 150mcg
Adult daily recommended intake of iodine is 140mcg and in the UK this is easily obtained from diet - milk, yogurt, cod, haddock, scampi and other food.
Levothyroxine also provides iodine at around 65mcg per 100mcg Levo (not by added iodine but by deiodinase).
Iodine solution used to be used to treat hypERthyroidism before the current radioactive iodine treatment so it can cause hypOthyroidism or make it worse, and it is certainly not recommended when Hashi's is present.
Thank you, you kind of read my mind, I will stop it as I don't feel is the best for me anyway. I will stop the zinc supplement too until I get NHS and medicheck results.
👏 qell done for figuring out. Today I felt great. No pains but I kinda doble dose without realising in the space of 12 hours ..... I am changing the time I am taking the Levo. A good result perhaps! I felt like me again !
Thanks Mividauk2! I think maybe you need digestive enzimes and food intolerance tests? betaine with pepsine is very hepfull and also, drink enough water to your weight is very good for better digestion (your kilograms/7*250ml of water, is a formula never dissapoint!) 💜 wish you all luck and congrats for willing to educate yourself! its a very important step!🍀
Very kind , thank you. I am having lots of test on the 6th and whatever the NHS refuses will do privately. My water intake has been poorly this week actually! Thank you dear!
Oooo🤔. I’m interested to know what you know about contraceptives and hypothyroidism. Having gone through the menopause (barely noticing because of everything else) I had not stopped to consider much other than getting well. However the female hormones topic has reared its head a few times recently for others more than myself and I confess I could do with a bit of recommended reading to get me started - would very much appreciate your advice 😬👍.
For better understand hormones and menopause, I recommed very much this book and the blog of Lara Briden. Also Jolene Brighten social media and her book "beyond the pill" is a good font of real information for women with hormonal and thyroid problems.
😍 "additionally-I'm your first follower!" ooh many thanks Charlie-Farley! I´m very excited to help others by growing in my profession and divulge the correct info based in science with 💜
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