" Liothyronine does is fixed at 10mcg in line with local formulary and cannot be increased im afraid"
to which I questioned as a previous mistake I made which I had stated I was on 50mcg of Lio to which the nurse at time said that was the limit, and mentioned that TSH is not the most effective way to manage symptoms.
Endo nurse response
"Liothyronine cant be increased as there are clinical guidelines around this"
As the same Nurse responded this again , i asked her that i think i was aware of the guidelines, and that there shouldn't be limits as everyone is different I also requested for her to share the guidelines with me... this did not happen.
I requested to see my consultant and he has agreed to see me end of March. I will also ask for a repeat blood so he has current bloods for his records. In the mean time, I will try and get my vitamins at a better range.
Thanks everyone!
26.01.23
Hi all,
I hope you don't mind me reaching out again, I'd like to have your thoughts regarding bloods because I feel that my endo team try to fob me off...
Before Christmas I was suffering and still suffering with weight gain and fatigue. They upped my Levo from 75 - 100 as my T4 was below range and I was to have bloods in Jan (the ones below). In the mean time the on call doc wanted to check nothing else was wrong as I mentioned to her about my symptoms so did a full blood test which all came back normal apart from an abnormal serum alkaline phosphatase result below which I have to take again in Feb (this is unusual for me, so I hope nothing is wrong there!).
Currently on 100mg Levothyroxine and 10mg Liothyronine for the past 6 weeks and these were the latest blood.
Latest results hospital 25/01/23
TSH = 0.03 Range : 0.27 -4.2
T4 = 16 Range: 12 - 22
T3 = 5.7 Range 3.1-6.8
Latest results doctors 11/01/23
Folate = 7.1 Range: 3.9 - 20
B12 = 330 Range: 179 - 2000
Ferritin = 120 Range: 13-150
serum alkaline phosphatase = 146 Range: 30 - 130
Ive just received a letter stating to alternate 100 levo and 75levo keep Liothyronine same and retest in 6 weeks due to the TSH. But I am so upset that they want to do that when when weight gain and fatigue symptoms have not improved! I feel like im banging my head constantly for them to hear what my symptoms are and it massively affects my mental health. I seem to see the best improvement when I increase/started taking Liothyronine but with the TSH so low I'm worried about asking them to increase my Liothyronine to relieve my symptoms.
Ive also researched low TSH symptoms and I have none of them.
I personally would like to try an extra 10 mg Liothyronine to take at night (as all my meds are taken in the morning) to see whether this helps with my fatigue and the weight gain. Do you think this is a safe reasonable / ok thing to ask with the above test results?
Again sorry for the lengthy message... one day I'm hoping these will stop🤞
Also does anyone know if Health Unlocked have an app? Or is it just web based site?
Thanks again in advance 🧡
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BluSurfer
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Hi SlowDragon thank you so much for your response and time.
Hashimotos was a label given to me when i was first dianosed.
I have had a coeliac test years ago which at that time i had to eat gluten for a week and on my fourth day I was so poorly I stopped eating wheat - the test came back negative (not celiac)
I have limited dairy and can cut out if necessary but obviously with the increase in living alternatives can be more expensive but if it helps I will 100% do anything. Im also not a vegetarian although I would love to be but worry B12/folate bloods would deteriorate further making things worse!
No Vitamins since mid/late last year when folate acid was below range then i was on folic acid for 3 months ending in October I think.
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 currently difficult to find at reasonable price, should be around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins)
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Just to make you aware, you need to eat gluten every day for 6 weeks before a coeliac test, as per Coeliac UK advice. Lots of GPs don't seem to know this, and give incorrect advice.
I fell foul of this myself, as didn't eat enough (the equivalent of 2 slices of bread per say is suggested), and I wasn't eating that much.
My test came back negative, but no surprise really given the above. I went gluten-free anyway, and it will be 3 years in April. I have no idea if I'm coeliac/gluten-intolerant, but to be completely honest, am too scared to re-introduce gluten after that long off it. Given the evidence that suggests it helps being GF if you have Hashimoto's, I'm happy to stay off it.
You expect GPs to know this kind of thing, as it is a basic requirement for the blood test. I'm in a few coeliac/GF groups on Facebook, and you'd be surprised just how often this comes up, with people being told the same thing as you.
As we all know from being on this thyroid forum, GPs don't know much about the thyroid either! It is disappointing when you think you've done what you've told, had a blood test, then assume that that result will be correct.
Anyway, if you do want to pursue another test in future, Coeliac UK have all the information on their website (and you could always show your Dr that too if you have any issues). Obviously up to you if you want to go to that trouble - you did say that you were ill after 4 days of eating gluten, so might decide it's not worth it. That's the decision I made after already going gluten free.
was test done early morning, ideally around 9am latest and last dose levothyroxine 24 hours before test
Day before test you should have split T3 into 2 x 5mcg doses and taken last 5mcg dose approx 8-12 hours before test (ie after 9pm)
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Suggest you try splitting T3 every day as 2 x 5mcg
Waking and approx 10-12 hours later
You might also as separate trial try splitting levothyroxine as 2 x 50mcg
Taking half dose waking and half dose at bedtime (or later afternoon)
Many people splitting levothyroxine gives better results
Suggest you refuse to reduce dose at moment while you work on improving low vitamin levels and trying different dosing regimes
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 themand their families and carers or guardian. "
Comprehensive list of references for needing LOW TSH on levothyroxine
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
SlowDragon yep test was done 9:10am with Levo and Lio taken just over 24 hours before test.
I get the same brand of Levo now i'm on 100 - accord (75mg was Teva i think but I dont have the box anymore)
I have never tried splitting, can I split the pills in half or should I ask for split doses? The tablets are very small so I dont think there is a split mark on them.
Can I also double check that dairy and caffeine can effect Levo so to avoid for an hour after taking the tablets? For example I take my does at 7:30 and make sure to have breakfast after 8:30am.
Thanks again for your time, and the links I will have a read, its really appreciated!
Thank you, this is what I was worried about "over medicating" as that is what the endo team put in the letter . Ok, I feel I am prepared to go back to them now.
I'm going to ask for an increase in Lio 5 mg for evening dose. Hopefully splitting the dose will make everything better 🤞
I think they are very unlikely to agree to increasing your Lio from 10mcg to 15mcg at the moment BlueSurfer.
At best, you may get them to not reduce dose of Levo at the moment, (as Slowdragon advised ~ask them to delay the reduction for a few months while you try to improve vit b level and trial splitting your 10mcg Lio am / pm .. and to allow longer for symptoms to improve ~ after all 6 weeks is nothing in thyroid hormone terms, when waiting for symptom improvement to catch up with a change/ increase in levo / or adding lio )
Also do bear in mind that the fT3 result you have there is not correct :
FT3: 5.7 pmol/l (Range 3.1 - 6.8) 70.27%
,, it was taken 24 hrs after the last dose of T3 so you have measured it at it's lowest point .. if taken correctly at 8-12 hours (to measure the average level while avoiding the peak a few hours after ingestion) then it would be higher than it looks there......in fact it's possible it would 100% or even be over range . so you shouldn't increase Lio unless you have tested correctly and know what your fT3 levels really are.
Re. the inevitable "low TSH is a risk for your heart and bones" conversation the following may be useful :
It's a shame the TSH on that test was 0.03 and not 0.04 ~if your TSH had been 0.04 you could use this paper to try to persuade them to leave you on your current dose of 100mcg Levo / 10mcg T3 academic.oup.com/jcem/artic... ~ as it shows risks were not increased with low TSH until TSH was below 0.04 (Between 0.04 and 0.4 the risks were the same as for TSH 'in range' 0.4 -4)
see my reply to this post (3rd reply down) for lots more info about 'low TSH /Risk vs Quality of Life' healthunlocked.com/thyroidu...
This paper shows the risk of bone loss with long term supressed TSH were actually negligible as long as fT4 is in range. healthunlocked.com/thyroidu...
Thank you so much for your message its very much appreciated. I will have a look at your links for sure.
Its also very annoying that the day I had to drive to the doctors or hospital for the blood test, I actually felt more awake on that day, its like my body knows its going to get bloods so it behaves its self...does anyone else have that? Like the stress of doing that task?
Increases in lio are better done in 5mcg. This is gentler on the system and going slowly gives the body time to adapt.Personally I would be inclined to try a small increase in levo first as your ft4 is under 50%through range. This increase would slightly raise ft3 as well.
Having said that I must point out that the body does take time to adapt. Symptoms don't all disappear at once. At some point we need to settle on doses and see how the body adapts in the longer term.
Lalatoot Thank you for your response, i really appreciate this forum and the people on it!
If I was to increase my T4 to try and get to half way through range - would that lower my TSH levels which means the endo team would not do that? is that right?
What should be optimum T4 and T3? Should I be wanting them to be somewhere/ just over the middle? and the TSH in the lower half of the range right?
Any increase in levo or lio will lower tsh further. You are unlikely to get tsh into range unless you stop your lio(not recommended) or drastically reduce your levo(not recommended).
There are no set levels to aim for for ft4 and ft3 - we are all different and need to find what suits us.
I altered doses for 2 years. In the end my levels seemed to stick at ft4 50% and ft3 72%. (this is ft4 measured at its lowest point and ft3 measured at its average level).I decided at that point to stop dose changes and see how symptoms resolved longer term. 18 months on and things are still improving.
Lalatout I was just thinking I was going to have to look everywhere for this advice I know you have previously given similar, which I was remembering somewhere on the blog! Apologies to BluSurfer for butting in and thanks to Lalatout for putting up the info again. My private endo did not mention the phrase TSH at all, during our discussion, thankfully, and has not mentioned it in her report to my GP either. Only hormone levels! So much more professional and knowledgable I thought!
Its been my experience as soon as you start complaining about weight gain and wanting more T4/T3 the doctors shut down its as if your a drug addict looking for a fix …. I know its not true and the issues of weight gain and fatigue are absolutely a real thing but doctors don’t care they care only about the lab results and if yours are in range thats that they won’t give more meds… just my opinion.
this is 100 % its like they judge you straight away. And then the news shouts out that obesity is one of the biggest killers?... why is it such a struggle with NHS, I was small for most of my adults life 56-62kg, and now I am obese and tired all the time. I have an active life now (because the meds have worked) but Im still not right! Im 90kg now, since Lio in my life last year. I managed to drop from being over 100kg. I try to do everything I can to keep a healthy life to not further hinder myself then.... Head and brick wall comes to mind. (sorry for the rant its just so upsetting!)
Think about people in their 40s or 50s that have horrible osteoarthritis in both knees can’t walk use a wheelchair, cane or walker to only be told your too young for knee replacement come see us when you are over 60 and we can talk and to add insult to injury they tell you to stay active and keep weight down its as if your excruciating and debilitating knees will somehow magically repair themselves if you stay active and stay a normal weight and somehow Obesity won’t get yeah…. Its the idiots way of thinking that somehow everything thats wrong with you is YOUR fault and not anything else…makes me mad I feel for people like us and people who hobble around with knee pains from osteoarthritis…. I read the knee thing a lot from younger folks and how it’s destroyed their health and makes them feel hopeless and with it comes lots of other health issues.
After I lost my thyroid I morphed into another human being lost and hopeless to get any doctor to see I wasn’t huge before my thyroidectomy… guess what they don’t care and they never will because they have no hearts and what might have been a heart at one time is now filled with suspicion.
BlueSurfer. In some regions of the UK , their CCG's (now called ICB's) regional prescribing formularies do have a limit of 10mcg when prescribing T3 as part of combination therapy on NHS.
If your endo / hospital / GP is in one of those regions , then this nurse is correct and you won't get more than 10mcg from the NHS there, no matter what your symptoms or bloods are ( obviously it's a stupid policy and a totally unfair post code lottery ) , but in some regions this policy does currently exist, and an NHS endo in that area will not be allowed to go over 10mcg.
if you poke around you may be able to find and read your regional prescribing formulary for yourself on the internet ~ google the name of your CCG / ICB area + prescribing formulary or RAG codes ( Red / Amber / Green )...and when you find it do a search for Liothyronine.
and click on the link in that document to the "T3 Prescribing Report 2022"~ you may find your area's current T3 prescribing policy listed (named and shamed) on there .
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