Hi thereJust wondering if anyone has any advice or has experienced similar. I've was diagnosed with Hashimotos 5 years ago. I'm essentially an active person but it's starting to get to me how Im feeling so tired and keep having flare ups despite being in the 'normal tsh' range. I've tried adjusting my diet but the flare ups very happening and it's really starting to effect my life. Anyone had similar and found a solution? Many thanks in advance. Very much appreciated!
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SlowDragonAdministrator
Welcome to the forum
Do you have any recent blood test results you can add
Do you always test early morning and last dose levothyroxine 24 hours before test
How much levothyroxine are you currently taking
Which brand of levothyroxine
Do you always get same brand levothyroxine at each prescription
It’s absolutely ESSENTIAL to test vitamin D, folate, ferritin and B12 at least once a year minimum
Do you have recent results
What vitamin supplements are you currently taking
As you have Hashimoto’s, are you already on strictly gluten free diet or dairy free diet
If not, get coeliac blood test done via GP before considering trial on strictly gluten free diet
Hi. Thank you so much for such a speedy reply! You have been so helpful, things I wasn't aware of - testing vitamin D etc. The brand seems fo vary from prescription to prescription. Can this make a difference? Im currently on 125mg.I didn't realise about dairy and do have quiet a bit so I will try this thank you. I try and have as little gluten as possible but are not completely gluten free. I will get a test then. Thank you so much - I really do appreciate it. Was told I have it and kind of left to my own device with it all.
Sorry Im taking selenium and iron
When did you last get full iron panel test for iron including ferritin
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Do iron panel test early morning and fasting.
Stop iron supplements 5-7 days before test
Posts discussing why important to do full iron panel test
Which brand of levothyroxine are you currently taking
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, 50mcg and 100mcg ....but Accord doesn’t make 25mcg tablets
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
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.
academic.oup.com/jcem/artic...
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).
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
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
markvanderpump.co.uk/blog/p...
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
Again, thank you so much. My 25mg are Teva and the 100mg are accord.
Does the dairy free help reduce antibody attack?
What were your last thyroid test results……TSH, Ft4 and Ft3
Antibodies aren’t attacking……they are hoovering up after an attack
Many (most?) of us with Hashimoto’s need dose levothyroxine high enough to get TSH low to shut down your own thyroid and reduce the swinging in levels
The lower TSH is, usually the lower Thyroglobulin (TG) antibodies are
Strictly gluten free/dairy free diets frequently slowly reduces TPO antibodies for many hashimoto’s patients.
Dairy and gluten are often inflammatory for many people
Brands of levothyroxine
So Accord doesn’t make 25mcg tablets
Either try Mercury Pharma or Wockhardt 25mcg instead
Or get prescription changed to 50mcg tablets to get Accord and cut a 50mcg tablet in half to get 25mcg
My gp requested not Teva on my levo script but I get what they give me and I presume that's all they have.I have no idea what to do about this.
Afraid you need to take this on yourself.
Check what has been dispensed by opening the bag at the counter, in full view of the staff. If you walk away, they cannot take it back.
If your prescription says "No Teva" but they have put any Teva in, explain and ask for something else. They might be helpful. They might have another make on their shelf.
If you get nowhere, ask for your prescription back and go to another pharmacy.
I understand that some of us have limited options - especially in pharmacies that are part of GP surgeries, or when we live in rural areas with few options.
Ethel103 .... always open the bag to check what brand you have been given WHEN it is handed to you (while still standing at the counter in the chemist) as they can't change them once you've left... if your prescription says not Teva , then point that out and ask for replacements if necessary .
I had to find a different chemist that was prepared to be more helpful and then got my repeat prescription moved there .. the chemist attached to the GP surgery were not helpful at all. but this new one avoids Teva for me with just a note on the chemist computer (which this one can be bothered to look at , unlike the last one) ... it's not actually written on my prescription.
point this MHRA Safety Update out to any patronising chemist who tells you "there is no difference all levo is the same"
From:
Medicines and Healthcare products Regulatory Agency
Published
19 May 2021
gov.uk/drug-safety-update/l... gov.uk/drug-safety-update/levothyroxine-new-prescribing-advice-for-patients-who-experience-symptoms-on-switching-between-different-levothyroxine-products
"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"
SlowDragonAdministrator
Probably not a lot of point testing for coeliac if only eating very low gluten levels
Instead just go absolutely strictly gluten free
Recommend getting FULL thyroid and vitamin testing 6-8 weeks after being strictly gluten free and on unchanging dose levothyroxine
Ok thank you so much - you've been so incredibly helpful and feel much less lost about what to do. I will certainly try the strict gluten free and see if the antibody level drops. Fingers crossed! Thanks again. So glad I saw this on Twitter 😊
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
Hi greentrees I used to have regular flareups.
I have been 90% better on gluten and dairy free diet.
My dose is changing right now, I've gone through the process from 50mcg to 75 mcg to now 88 mcg, I think I will possibly end up back on 125mcg , as that's what I was on pre-menopause on contraception injection, my hormone levels are possibly similar now, to then.
Through all my dose changes, from 125mcg to 50 and back, my t3 levels don't change, so clearly I have a conversion problem. Hoping the endocrinologist I'm now seeing (first one I'm seeing, never been referred to one)can help me find optimal ranges for each hormone, not just the ones they think are important.
At the moment I have heavy arms, fatigue, restlessness.
I also had falling asleep driving , on 50 mcg, so I self upped the dosage to 75, then had a test after about 6 weeks.
I'm trying to be patient, but my weight is piling on.
Hi there. Thanks for your reply and advice re gluten. So sorry you're not feeling great though. Did you ask to see the endocrinologist or did the GP refer you?Everything crossed they get your feeling more yourself soon x
I asked my gp, she didn't know one, my mum's next door neighbour is a doc and she recommended one after I asked her. She's private, so I'll be getting bare minimum , but I have to try to sort this out.I make a lot of gluten free stuff,
I don't go without, check packets, so many things have wheat flour, do uou may be having flare ups from eating licorice !(for example)
Sweets, sausages , gravy granules.
I'll start checking packaging more throughly too. Thank you so much.
SlowDragonAdministrator
You are legally entitled to printed copies of your blood test results and ranges.
Unfortunately many GP’s and labs only test TSH which is completely inadequate
First step is get hold of your test results
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 many GP surgeries 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 (Hashimoto’s or Ord’s thyroiditis)
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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...
Just Thyroid includes BOTH TPO and TG antibodies -£49
randoxhealth.com/at-home/Th...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£32 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £31 via
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...
Come back with new post when you get results
Thank you. I'll call up tomorrow. I haven't had a full test (antibodies etc) since being diagnosed. They only test my tsh which is really frustrating. I will ask for a full for the next one. I'll come and let you know. Many thanks
Increasingly rare to get anything other than just TSH….
Ask GP …..but often request is over ruled by lab
Thousands of U.K. patients are forced to test privately to make progress
See what you can get via GP first
Hi SlowDragon.. can I ask about getting access to your blood or test results in wales.. I see many of your posts saying you can get your results. But I have had trouble getting mine . From G..P I have been told that every time I need them, I need to fill in the form again and also take photo ID is this correct? Also In Wales we don't yet have any online access. Thanks
Yes I gather there’s no online access in Wales yet
So, if the receptionist doesn’t know you, you would need to present photo ID
Personally I gave up getting tested via NHS about 10 years ago. My GP happy to accept private test results to keep on file at my annual review
Seems the NHS App for Wales is currently being tested.
What we are working on
The NHS Wales App
The Digital Services for Patients and the Public Program (DSPP) is developing the NHS Wales App. The app and accompanying desktop website will offer convenient access to a range of health and care services through smartphones, tablets, and personal computers.
The NHS Wales app will include a variety of useful features such as appointment scheduling, test result access, and prescription ordering. In addition, the App will benefit health and care professionals by providing them with a friendly and flexible way to help patients with their care pathways. During its private beta testing phase involving 10 GP practices and more than 700 people across Wales, the app received positive feedback with 75% reporting high levels of satisfaction.
The NHS Wales App will enter the next phase of testing early in 2023. For more information on the NHS Wales App please contact: dsppinfo@wales.nhs.uk.
also something to consider is how you handle stress. I think in my case, all major flare-ups have been caused by being stressed. I am very much a work in progress in this regard, but find meditation- when done regularly! - does really help. Bu I’ve also had to re-think my whole approach to life, and learn to stop pushing myself and be more realistic about what I can achieve… and about what’s really important to me. As I say, a work in progress and perhaps not applicable in your case, just wanted to mention it though in case it helps.
Do you know this is so interesting, about a week after something particularly stressful my symptoms really increase. Do you use an app or something to do the meditation? Thanks so much for your reply
Hello there, sorry for taking a while to get back to you again. I don't use an app for meditation, I learned many years ago from a CD by Jon Kabat Zinn. I was quite dedicated for several years, and could really notice the difference . . . and then inexplicably let it all go, until recently. One thing you might like to try though, as a step towards meditation, is something called resonant breathing. It's a technique of breathing ideally at 5.5 breaths/minute which has been shown to put the body into a relaxed state. There are apps that can help you to get into this rhythm by telling you when to breath and when to breath out, such as BreathingZone for the iPhone and one called Paced Breathing for android. Both are free. I see daily meditation as a way to try to keep myself from getting too stressed in the first place, but once stress has got me, I find doing this really helps, even just 5 minutes. All the best!
if they are telling you that your TSH is in the normal range, please remember that the NHS ranges are set too wide. It was explained to me by my private only endocrinologist that your TSH needs to be below 2.5 preferably around 1.00. This is where a healthy persons TSH normally is. So, if it’s above 2.5 you need a dose increase potentially but you really need T4 and T3 results at the same time. It could be that your T4 is high enough and your very important T3 is too low. If that was the case you’re probably a poor converter of t4 levothyroxine to the most important hormone T3. We all need adequate amounts of T3 to function well. Have you checked your cholesterol lately along with vitamins D, folate, ferritin and B12. These are important to be optimal to help you also. You can get these done privately through Monitor My Health if your GP won’t do it for about £27
Thank you so much for taking the time to reply. All really helpful and interesting. I haven't had any of those checked so will do that. That would be great if I were low in something then would be an answer. Thank you, hopefully my GP will test. If not, I'll go privately.
please test privately if your GP will not do the tests. Monitor My Health has a number of tests at reasonable prices and they are very quick to respond.
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