I am looking for an explanation as to why my TSH is so low.
Recently, i was admitted to ACCU ward with very symptomatic afib which lasted for 26 hours. Was eventually sent home and section in discharge letter states:
"Low TSH-0.19 - poor compliance with levothyroxzine - needs OP endocrine follow up"
levo dose 75/50 alternate days....i dont have a thyroid!
What does this mean? Why the concern about Low TSH?
Last TFT results 20/1/24 medichecks. Levo dose was 50 levo daily
TSH 3.47 0.27-4.2
T4 15.9 12-22
T3 4.1 3.1 - 6.8
So January TSH was 3.47, hence increase of 25 levo every alternate day TSH is now 0.19!!! Something does not seem right here.
Would appreciate some feedback.
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DizzyD
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When dose Levo is increased TSH will initially drop
It then slowly rises a bit once body gets use to higher dose levothyroxine
Blood should be retested 8 weeks after increasing dose
Recommended that all thyroid blood tests 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)
do you get same brand levothyroxine at each prescription
Hi slow dragon i follow all the advised protocol advice from this forum before i get my private medichecks test. So my results above are fairly accurate.NHS does not follow any protocol at all for TFT so the valaidity of test results are questionable.
Question is why do you think they were concerned about my TSH being 0.19 and referred me to endo?
Question is why do you think they were concerned about my TSH being 0.19 and referred me to endo?
Because TSH is (just) below range
Retest full thyroid and vitamin levels in another 6-8 weeks
Testing as recommended…..likely to see TSH has increased
But even if it hasn’t it’s irrelevant as long as Ft3 is not over range
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. "
from PULSE magazine for GP's... The article is available from ThyroidUK
If you want a copy of the article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine:
"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)."
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.
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
No i dont get the same brand at each prescription...been trying to sort it out with pharmacy for weeks. 50dose is one brand 25dose is a different brand. Both of these can change from week to week. Just phoned 3 pharmacies and was told they have no control over what a person gets because the its all down to what wholesaler sends them.
For others, Teva (lactose free) might be the only one for them
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,
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
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But 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
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
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.
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.
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).
In theory you should be able to get GP to specify brand on your prescription
In practice, many pharmacies can’t/won’t supply brand
Small independent pharmacies often more helpful
Personally having just moved areas (and therefore lost my wonderful pharmacy) I am finding it impossible to locate a local pharmacy in new area interested in honouring brand listed on my prescription
To be honest Slow Dragon i have no idea what brand i prefer. Just read that teva changes gut biome so thats ruled out, i on anti coagulants which messes gut up GP prescibed lansoprosol which i refuse to take because its contraindicated with levo.
Just know i want regular brand of 50/25...dont want them to be switched all the time. Reason being, my thyroid levels have been totally messed up after i was prescribed amoidarone to treat afib. basically this drug has very high iodine content...and very long half life. Been off it since August and still trying to get thyroid levels sorted. So, swithching brands all the time could be complicating things.
Read Gov UK article with great interest. Considering my circumstances (amiodarone issue) i am going to request oral solution formation when i see endo. In the meantime, i will try an find pharamacy who can supply same brand of levo for 50/25 dose.
Sorry to hear you are no longer with your favorite pharmacy. I was told by one pharmasist today that small local pharmacy will more than likely be able to supply same brand levo.
Sincere thank you for all info, help and support. Priceless. Hope you manage to find small local pharmacy pretty soon.
Mercury Pharma (also boxed as Eltroxin) both by Advanz
Or
Teva (makes 25mcg, 50mcg, 75mcg and 100mcg) - lactose free but also contains mannitol.
For some people it’s by far the best. It might suit you……don’t assume it won’t
Other brands - if GP altered prescription
Wockhardt makes 25mcg only - well tolerated by most…..you could take 3 x 25mcg tablets per day
Accord (also boxed as Almus via Boots and Lloyds) only make 50mcg and 100mcg - you could get extra 50mcg tablets and cut in half to get 25mcg
Vencamil (previously listed as Aristo) - lactose and mannitol free. But currently only 100mcg - could cut 100mcg into 1/2 plus 2 x 1/4 and take 75mcg per day
This summer 25mcg and 50mcg tablets should be available
Ahhh Slow Dragon Wockhardt 25 doses would be the best option because increases will be at 25 increments for quite awhile. So that is definite solution. Next step i need to find a small local pharmacist to supply it.I get weekly supply of meds only not monthly...so its like getting mixed cocktail of different brands quite often.
A few years ago i happened to mention that i forgot to take a particular medication ( not levo because thats first pill of day).Next thing i know my meds came in weelky blister packs.
I take Accord as named brand, my previously excellent independent pharmacy have clearly undergone a shake up as they've had lots of staff changes and the very friendly pharmacist I used to chat to isnt often there. Unfortunately the service also went downhill. So I recently changed over to Superdrug and have been very pleasantly surprised.
They stock Accord, although their version, also carried by Boots is Almus, which is made by Accord so exactly the same. The pharmacist told me they have stacks of it. It is unfortunately is a case of shopping around.
Ahhh brilliant reply greygoose, so cardologist is linking low TSH to severe afib? Was admitted straight to ACCU from clinic for stent check up. Blood sample was taken on ward about 1pm. I have been admitted lots of times with severe afib, bloods taken everytime. He could have looked at previous admissins/blood tests and compared thyroid test results to see TSH status was low everytime which would establish a 'correlation' which is not a causal factor. (Trigger) Seems like he was grasping at straws...my thyroid levels totally messed up after he prescibed amiodarone last april which is basically high consentration of iodine...has a very long half life. Been off that drug since August so half life is waning afib is occuring more often. Its not rocket science is it but hey ho he focused on low TSH. No way will i be going to see an endo....they have very little knowledge of how to solve messed up thyroid levels post amiodarone.Yes i do understand most docs have very little knowledge about thyroid. Neither do i otherwise i would not have posted question in the first place. Ahhh the penny just dropped....low TSH indicates high t4/t3. Sure you will correct me if i am mistaken.
low TSH indicates high t4/t3. Sure you will correct me if i am mistaken.
Sometimes, yes. But not always, that's the problem. You can have a suppressed TSH but Frees still be quite low. But, they believe it's the lack of TSH it's that is harmful to hearts and bones. But it isn't. TSH is nothing to do with hearts and bones.
Ahh yes my TSH (done is hospital) is on low side but no quite supressed and Frees could also be lowish going by my medicheck test 20 Jan. Having said that, frees could also be high. Thats what amiodarone does...raises or lowers thyroid levels....messes with conversion. Pity NHS didnt do full thyroid test. Another thing puzzling me is TSH 3. 47 20 Jan, Since then been on 25 levo increase altrenate days for 4 weeks and TSH is now 0.19.!! That's quite a drop considering such a small levo increase.If TSH is falling and frees were rising at times, coinsiding with addmissions to hospital with afib, amiodarone half life surges could be the culprit. If thats the case doc might be on the right path but he not connecting the dots linking severe afib episodes with amiodarone surges of iodine release.
Endos dont know how to deal with this issue.
Grrr i,m loosing the plot. Do know afib is very symtomatic an quite severe now. Honestly, believe post amiodarone, i have more problems than i orginally had.
Of course, you do know that the TSH fluctuates throughout the day, being highest around midnight, then dropping to its lowest around midday, then rising again. So, the time the blood is taken is very important. We always recommend having it taken before 9 am, because after that, it drops sharply. But, this is just one of the thyroid things that doctors don't seem to be able to grasp. I don't know why...
Ahhh so my blood test is hospital was taken between 1 to 1 30pm. Dose of levo on the day was 6.30am. Usually i never take NHS thyroid tests seriously.I always get medichecks thyroid tests before 9am.
Lots of variables to juggle here but amiodarone is the main culprit when it comes to afib. I have been told by numerous high ranking cardio docs that i am very "sensitive" to all anti- arrhythmia meds and heart rate control meds so i cant be prescibed anything. Sensitive is a cop out...took them 3 yrs to work this out...adverse reactions (worse afib) which they did not pick up on. Medications made me sicker. When severe afib hits again i can go to a+e, not for treatment cos there is non but to be monitored only. Shame on docs for assuming my thyroid levels etc were contributing to afib. They would certainly learn something along with endos if they came to this forum.
Hey lucky you. I had ft3 tested for 30 yrs by NHS. 2020 they stopped testing....only do THS an T4. Everytime, i go see endo i take my private medichecks results with me and i compare my results with hers. I make sure i tell her my results are sperior to hers because they are full thyroid test. Lol, for some reason she always asks if she can keep my private results.
It'll probably get stopped at some point. I do test privately as well as you are lucky to get more than an annual test on NHS. I'm guessing its a postcode lottery.
I get more than annual test because my thyroid levels have been totally messed up after taking a very toxic drug for afib. The ŭdrug has very high iodine content and messes with conversion of thyroid hormones pishing them up or down. The half life of the drug lasts a very long time beyond six mths, could be years so even though i stopped the drug in August its playing havoc with thyroid levels. Endos dont really know how to deal with this problem...i just have to increase very slowly, but despite that toxin from the drug can still push level too high or to low....hence regular tests on NHS until reach a point where level stays constant. Its a bit of a nightmare.
Frankly I'd be happier if I could just test and manage my own thyroid health myself, without any input from GP's. They just meddle with dosages with scant regard for how we feel and function in day to day life.
They are obsessed with TSH and the fact we have so many members struggling to regain their health tells its own story. Just give us the Levo and leave us to it 😩
My thyroid was removed over 30 yrs ago...no heart probs. My heart problems occured years later because they suppressed my thyroid hormones far too long.
Endo suppress TSH with high dose of levo cos i had thyroid cancer. T3 can go too high and over time cause problems. I only saw a endo once a year. In later years, I complained of palpitations many times to endo and GP an nothing was followed up. Jan 2020 was quite ill...endo reviewed my entire thyroid hisuory going back 30 yrs...he concluded " you have been over prescribed levo for 30 yrs which has more than likely damaged your heart" .How right he was.
Wow. I'm so sorry. I've had no thyroid 10 years. Without sounding rude how could I avoid that. I've been suffering from ectopics 9 years on and off but what's for back. Scared of getting a afib Drs say in ok but as I tell grey goose getting the right dose
Im not a medical person...wish i knew then what i know now. Ectopics is a warning sign...listen to your body. If they are dosing you with levo to supress your TSH get copies of all your TFT so you can see if there are any changes. People are dosed with highish levo to keep TSH supressed if they have thyroid removed. By doing this your pituitary gland does not release as much TSH into your body T4 comes from levo. Thing is though T4 likely to be near top of range or even go over range an one can likely get hyperthyroid symptoms which is not good for the heart. I was hyper person most of my life, hardly slept didnt know levo was causing this. Monitor all your symptoms. As i said, i am not medically trained in anyway. I speak from experience but ectopic periods could have been triggred by T4 being over range. I reported sporadic episodes of palpitations to endo and GP lots of times. No investigations. What was the reason for removal of your thyroid? Mine was cancer of thyroid, some cancer cells were left behind, hence zealous over prescribing of levo. Having said that, endo told me in 2020, that supressed TSH in my case went on for far too long. Hence the heart damage and afib. My advice to you is ask how long they are going to suppress you TSH for. Read somewhere, NICE i think, that TSH should only be suppressed for a certain length of time depending on your situation. In my case, my TSH was suppressed 10 years too long. Endo told me this. Knowledge is power....the doctors arent always right..they make mistakes. Hope that helps...! But remember all of us are different. I learnt the hard way...i trusted the doctors.
Suppressed means a person is given dose of levo high enough to lower THS. Example in my case: lets assume my THS was 2.19 that would be considered too high so my levo would be increased in order to lower TSH to 0.1 which is a suppressed TSH. For people who are not dosed to suppress TSH to 0.1 or similar low numbers, TSH would generally be higher. In general, suppressed issue aside, TSH number reveals if dose of thyroid meds are too high or too low. Endos, put too much importance on TSH so dont get caught up in this issue.
Having said that if your TSH is low i would ask if you are being dosed to supress THS. I dont think you will be because you did not have thyroid cancer.
In my case suppessing TSH was used to stop emmergence of any remaining cancer cells.
I not bothered about TSH i more interested in T4 and particulaly T3...low T3 can trigger afib...too high (over range) T3 can do same. Endos dont look a the complete picture they mainly focus on THS.
Yes, you're right. And I didn't say they didn't. But it has nothing to do with the TSH - which is a pituitary hormone. Heart problems are to do with T3 when it's too low or too high.
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