Very long story. I was going to say very short, but it turned into War and Peace, sorry! 20 year struggle with Thyroxine. Many years ago I got a good Endo who said because of sensitivity I should have a years supply of Thyroxine so I didn’t change brands or batches. I’ve had lots of “Episodes” over the years due to Thyroxine, been told by one Endo I’m allergic to it. I have tried T3 when it was £100’s a month, the liquid (not long enough to make a difference) I’ve tried every variation of how to take it. They don’t understand my reaction to it as I seem to get the symptoms of an underactive thyroid when I take thyroxine, but have very few symptoms when I don’t, even with a TSH of 79.9 at the moment it’s 45 or thereabouts. Yes, they checked for antibody interference. So my problem is that I was on Activis brand, which has now been taken over and they gave me Accord, telling me it’s the same just different packaging, So as I don’t trust any of the Ba&%$ds I introduced it slowly one pill of Activis alternate pill Accord and all went well for about two or three weeks then I was as mad as a box of frogs, panic attacks, suicidal thoughts etc, now I know what this is and what I have to do, IE stop taking Thyroxine for a few weeks and start again from scratch, taking tiny amounts and building up, but for a few weeks I’m bonkers. The thing is even though you know what’s causing it, it doesn’t make it go away. I say it’s like being drunk, you can know you’re drunk but it doesn't make you sober. Anyway I was really struggling with Accord but I’d just got a years supply at the staggering cost of £!4.22 How can the NHS afford me? So when I spoke to my phantom GP (will we ever see one again?) he prescribed “not Accord” so they gave me Almus for a month to see how I got on, how I laughed when I realised Almus is the same as Accord, you know when you just want to give up the whole bloody thing and go sod it I’ll just be ill if it’s so much trouble for anyone to actually give a toss. The thing is he’s put this stuff on repeat but that doesn’t work as you know, trying to get the same brand, can be impossible and you end up spending a week every month just trying to get something that’s not going to make you Norman Bates,” He asked me to speak to their pharmacist, why?? Anyway, all she did was quote prices at me, to which I replied, “well you know the hundreds of thousands of pounds my spouse and I have paid over the years in tax, I wonder if that would cover it?” She was not impressed. So options, I either ask to be referred to Endo to reinstate years supply which will take months or ask for a private prescription for years supply and source it from somewhere, maybe try the German one that’s got least fillers? I dare say if I ring my GP and go shouty crackers and cry he may reintroduce my annual prescription, but I honestly don’t know if I’ve got the fight left in me anymore. Any advice on this is gratefully accepted. Sorry for the long post!
really fed up with the whole thing! : Very long... - Thyroid UK
really fed up with the whole thing!
I introduced it slowly one pill of Activis alternate pill Accord and all went well for about two or three weeks then I was as mad as a box of frogs, panic attacks, suicidal thoughts etc, now I know what this is and what I have to do, IE stop taking Thyroxine for a few weeks and start again from scratch, taking tiny amounts and building up, but for a few weeks I’m bonkers.
What amounts are we talking here? How much do you start on? How much do you increase by, and how often?
I'm supposed to be on 100 and 125 every other day but I stick with 100 as it only works for me if I'm undertreated if TSH gets down to 0 I'm a mad man. Once the that happens I stop the any thyroxine and then start with a tiny amount, I break pills into quarters or less and build up over a month or so back up to 100, Dr basically just leaves on my own to sort it out as basically he has no idea what to do with me.
OK, but you didn't answer any of my questions, there. lol Details have to be far more specific than that.
So, as I understand it, you start off with 25 mcg, and increase by 25 mcg each time. But, how long do you wait in between increases?
I don't actually have a set time. I stop taking Thyroxine, wait till I'm sane, normally two or three weeks, then start taking say a quarter for a couple of week then increase to half for a few weeks and if I start to feel awful again knock it down again. It can take quite a long time but I don't really take note of how long it takes.
Well, that could be where you're going wrong. You need to leave a minimum of six weeks between increases. And, given your sensitivity, maybe increases of 25 mcg are too much for you - try 12.5 instead. But, I think you do need to be far more methodical about this. Your method sounds a bit hit or miss.
If your endo thinks you're allergic to levo (the fillers or the actual hormone?) has he not suggested taking an antihistamine before taking your levo? Have you ever tried NDT - Armour, for example?
you are right I am a bit hit and miss about it LOL. But Antihistamine make me really, really angry!!! I avoid them like the plague. known in the family as screaming meany pills The Endo who said I was allergic didn't say to what just I was allergic but to be honest she was a bit of fruit loop so I just glad that she let me have T3 and ran away ASAP
Much information about thyroid hormone products is in the document linked below. Yes, Almus is just an own-label supplier packaging of Accord. (Similarly, Northstar, but their 25 microgram product is actually Teva.)
You are an obvious candidate for levothyroxine oral solution (liquid).
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, around the world.
dropbox.com/s/shcwdwpedzr93...
When it comes to getting the brand/make you want, many have to go round several pharmacies - in person, by phone or even email.
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If you have problems, as you have explained, I do urge you most strongly to consider putting in Yellow Card reports. They really do help in getting issues recorded. I suspect this will be more for the benefit in the future rather than you directly, here and now. Nonetheless, it still seems a good idea. And do one for every product you ever get which causes problems.
This post explains more about Yellow Card reports:
🟨 Making Yellow Card Reports 🟨
healthunlocked.com/thyroidu...
🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨🟨
In the UK, the Medicines and Healthcare products Regulatory Agency (MHRA) operates the Yellow Card scheme for reporting issues with medicines.
They have slightly different approaches to:
🟡 Side Effects
🟡 Defective medicines
🟡 Counterfeit or fake medicines
All can be accessed by following this link:
Levothyroxine: new prescribing advice for patients who experience symptoms on switching between different levothyroxine products
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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
From:
Medicines and Healthcare products Regulatory Agency
Published
19 May 2021
Advice for healthcare professionals:
generic prescribing of levothyroxine remains appropriate for the majority of patients and the licensing of these generic products is supported by bioequivalence testing
a small proportion of patients treated with levothyroxine report symptoms, often consistent with thyroid dysfunction, when their levothyroxine tablets are changed to a different product – these cases are noted in UK professional guidelines
if a patient reports symptoms after changing their levothyroxine product, consider testing thyroid function
if a patient is persistently symptomatic after switching levothyroxine products, whether they are biochemically euthyroid or have evidence of abnormal thyroid function, consider consistently prescribing a specific levothyroxine product known to be well tolerated by the patient
if symptoms or poor control of thyroid function persist despite adhering to a specific product, consider prescribing levothyroxine in an oral solution formulation
report suspected adverse reactions to levothyroxine medicines, including symptoms after switching products, to the Yellow Card scheme
Background
Levothyroxine is authorised for the control of hypothyroidism. In the UK, prescribing of levothyroxine is usually generic, with no named product specified on the prescription. Patients may thus be changed between different levothyroxine products according to what is available at their local pharmacies, with the prescriber generally unaware of the specific product that the patient is taking at any particular time. This generic prescribing approach is supported by strict UK regulatory requirements for licensing to ensure compatibility (bioequivalence) between products.
Nevertheless, the MHRA receives reports of patients experiencing adverse events on switching between different levothyroxine products. The MHRA has conducted a review of the available data and sought advice from the Commission on Human Medicines (CHM) as to whether any regulatory action is needed to minimise the risk of adverse events on switching between different levothyroxine products.
Reports considered by the review
Levothyroxine is one of the most commonly prescribed medicines in the UK. Between 1 January 2016 and 31 December 2020 there were a total of nearly 260 million packs of levothyroxine dispensed against a prescription in UK retail and hospital pharmacies. [footnote 1]
For the 5-year period between 1 January 2015 and 31 December 2019, the MHRA received 335 Yellow Cards reporting one or more of the terms ‘product substitution issue’, ‘condition aggravated’ or ‘drug ineffective’ with levothyroxine. The majority of reports were received from patients rather than healthcare professionals, with 47 of the cases having a healthcare professional reporter. Associated symptoms were mostly consistent with hypothyroidism or hyperthyroidism, and included fatigue, headache, malaise, anxiety, palpitations, pruritus, nausea, myalgia, dizziness, arthralgia, feeling abnormal, alopecia, depression, abnormal weight gain, and insomnia.
Of the 335 cases, 12 reported a recurrence of their symptoms after a second trial with the medicine concerned. Only 27 of the 335 cases included reference to thyroid function test results. Of these, 9 suggested a hypothyroid state, with 4 hyperthyroid and 14 euthyroid. In most cases, thyroid function test data from before the product switch were not available to confirm that thyroid function was well controlled before the switch, or to indicate whether a substantial change in parameters within reference range had occurred.
The underlying causes for the symptoms experienced by patients switching between levothyroxine products are generally unclear. Potential causative factors could include:
gastrointestinal comorbidities potentially affecting levothyroxine absorption [footnote 2]
concomitant use of medication reducing gastric acidity, which can also affect levothyroxine absorption[footnote 3]
very low thyroid reserve[footnote 4]
intolerance or allergy to an excipient in a particular brand
specific genotypes relating to thyroid hormone synthesis or thyroid receptor function [footnote 5] [footnote 6] [footnote 7]
For the most part, the symptoms experienced on switching levothyroxine tablet formulations could indicate the need for dose adjustment. However, some patients experience symptoms despite thyroid function testing showing them as biochemically euthyroid.
These symptoms experienced by a minority of patients are acknowledged in UK professional guidelines. These guidelines note that although generic prescribing of levothyroxine is appropriate for the vast majority of patients, in rare cases a patient may require a specific levothyroxine brand to be prescribed.[footnote 7] In some patients, better control of thyroid function may be achieved with oral solution forms of levothyroxine than with tablets.[footnote 8] [footnote 9] [footnote 10]
Management of symptoms after product switching
CHM considered the reports in the UK and advised that levothyroxine should continue to be prescribed generically for most patients. If a patient reports symptoms after their brand of levothyroxine is changed, healthcare professionals are advised to consider testing of thyroid function and follow the ‘Advice for healthcare professionals’ section above.
The product information for levothyroxine tablets is being updated to include this advice for prescribers – see example Summary of Product Characteristics and Patient Information Leaflet.
Report on a Yellow Card
Please continue to report suspected adverse drug reactions to the Yellow Card scheme.
Healthcare professionals, patients, and caregivers are asked to submit reports using the Yellow Card scheme electronically using:
the Yellow Card website
the Yellow Card app; download from the Apple App Store or Google Play Store
some clinical IT systems for healthcare professionals (EMIS, SystmOne, Vision, MiDatabank, and Ulysses)
When reporting please provide as much information as possible, including information about batch numbers, medical history, any concomitant medication, onset timing, treatment dates, and product brand name.
Report suspected side effects to medicines, vaccines or medical device and diagnostic adverse incidents used in coronavirus (COVID-19) using the dedicated Coronavirus Yellow Card reporting site or the Yellow Card app. See the MHRA website for the latest information on medicines and vaccines for COVID-19.
Article citation: Drug Safety Update volume 14, issue 10: May 2021: 1.
gov.uk/drug-safety-update/l...
thanks for that !!
mart12345,
Intolerences are common when we have suffered years of mismanaged hyopthroidism. Do you have Hashi?
Many of us have given up the fight and just self medicate. However, do your thyroid hormone levels reflect those high TSH’s? What does your GP say about them? They could be the cause of your manic periods as opposed to your intolerence of Levo.
Members supply their sources to one another by DM but you need to know exactly where your hormone levels lie and what amounts you should be medicating, as your regime sounds all over the place.
Do you have any recent thyroid hormone test results complete with ranges (numbers in brackets) for members to comment?
Thanks for the reply .Ive been like this from day 1. Thyroxine has never agreed with me I've had quite long periods where I've coped for long periods but only if I stick with one brand, but it's never been good if I'm honest. had bloods done last week or week before TSH was 45, T4 and T3 normal, which again GP doesn't understand. So I kind of feel just am left to my own devices,
TSH is too high as you are aware.
Have you asked your local chemists the name of 'other' levothyroxines they can source so you can trial them. Sometimes it is the fillers/binders in the tablets that can affect us.
Try taking one antihistamine tablet one hour before your next dose of levo. If you don't have symptoms request a trial of another 'make' of levo.
The majority of members can understand exactly how you feel when the levo isn't doing us any favours and we feel worse.
Strongly recommend getting FULL thyroid and vitamin testing done
See EXACTLY What is going on
But there’s absolutely no point running any blood tests until been on constant unchanging dose and brand of levothyroxine for minimum of 6-8 weeks
Essential to have GOOD Vitamin D, folate, ferritin and B12
You could test vitamin levels now
Likely to find they are very low if been hypothyroid long time
Hypothyroid results in low stomach acid and leads to poor nutrient absorption and low vitamin levels as direct result
Frequently necessary to supplement continuously to maintain optimal vitamin levels
Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Gluten intolerance is extremely common with Hashimoto’s
Hashimoto’s can also cause bipolar type symptoms, manic depression etc
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 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
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 to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
Mental issues including Bi-polar and Hashimoto's
drknews.com/when-hashimotos...
holtorfmed.com/mental-illne...
thyroidpharmacist.com/artic...
hypothyroidmom.com/miss-dia...
Please don't apologise!
Have you considered that you are not tolerating thyroxine per se! Has your medics suggested you try NDT or T3 instead, over several months....not just a brief trial. It can take many months to establish a therapeutic dose of T3, it took me well over a year!
But first you need to have a full thyroid test as advised above by SlowDragon that will show your serum levels of free thyroid hormones as well as nutrient levels listed which need to be optimal for good thyroid function.
The labs will also show how well you are converting the storage hormone T4 to the active hormone T3 which is essential to every cell in the body and required in an adequate and constant supply. High FT4 with low FT3 suggests poor conversion and the possible need for added T3.
You need to keep a diary of all symptoms, dose regimes and test results a "try it and see" approach won't help. A "normal" result just means that it sits within the lab range not that the dose is optimal for you which, by your symptoms it doesn't appear to be!
You may be taking a substantial dose of hormone/T3 which is reflected in your labs but unless it reaches the nucleus of the body's cells where it becomes active and effective you can still have hypothyroid symptoms ie tissue rather than glandular hypothyroidism. If this is the case you may need a larger dose of T3 only. Discussing this possibility with your medics may be a challenge! You may have a form of thyroid hormone resistance!
I'm not surprised you are fed up....been there, it's a struggle which I had to take control of myself because my doctors could only suggest levothyroxine which wasn't helping along with a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. I could barely function. I'm now T3 only and improving but it is the last resort! My long thyroid journey is detailed in my profile should you be interested.
Just to let you know there is still light at the end of what seems like a very long, lonely, and dark tunnel. Keep fighting Hidden
But first...full thyroid test first, post your results and members can have a look at what is going on.
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