What on earth is happening to my TSH levels? - Thyroid UK

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What on earth is happening to my TSH levels?

DizzyD profile image
27 Replies

Over the past three months I have had three TFT tests and due to my own ignorance I cannot get my head around the TSH numbers hence i would appreciate some feedback.

20 January (Medichecks) TSH: 3.47.......action taken by endo,'increase' of 25mcg levo alternate days bringing dose to 50/75 alternate days plus 30mg Efra daily (endo in not aware that I take the efra). Note: Endo planed to get TSH down to 2.5 with FT4 in a mid/normal range???

22 February (NHS) unplanned test, TSH: 0.19.......test was done after I was admitted to ACCU with very symptomatic afib. Note: based on TSH of 0.19 cardiologist is of the opinion that my thyroid levels triggered the AFib??? How can TSH drop from 3.47 to 0.19 in a space of 4 weeks after such a small increase of levo?

19 March (Medichecks) planned retest post January levo increase: TSH result now 0.385??? Is this figure higher or lower than 0.19?

Needless to say I am very confused indeed. Before getting both medicheck tests I did follow the protocol recommended on this forum leading up to the tests.

What do you guys think?

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DizzyD
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27 Replies
Forestgarden profile image
Forestgarden

TSH result now 0.385??? Is this figure higher or lower than 0.19? 0.385 is the higher value. Has anything else happened that might have improved your meds absorption? Or have your vits and minerals improved, which might have increased t4 to t3 conversion? Do you take your meds at the same time each day, on empty stomach, no food for an hour? Has this changed at all? Have you had any cold/virus etc which could have affected results?

SlowDragon profile image
SlowDragonAdministrator

When dose of thyroid hormones is increased typically TSH drops quite a lot, it then slowly creeps upwards as body gets use to increased levels of thyroid hormones…..getting ready for next dose increase after 6-12 weeks

You need to tell endocrinologist you’re also taking NDT (Erfa)

Taking any replacement thyroid hormones that contain T3 will significantly lower TSH

Approximately how much do you weigh in kilo

Guidelines, when ONLY on Levothyroxine, is that eventual dose likely to be around 1.6mcg per kilo of your weight per day

Essential to test vitamin D, folate, B12 and ferritin

When were these last tested

What vitamin supplements are you taking

Is your hypothyroidism autoimmune

DizzyD profile image
DizzyD in reply toSlowDragon

Hi slowdragon had thyroidectomy 1992. Been taking small amount of NDT along with Levo for 3 years now....never been a problem. My weidht is 57 kilo. Vit D in range but low in range. Ferritin Folate ok. I take B complex, D gel caps 4000, magnesium, vit c . Ferritin in range but needs ramping up so started iron supps yesterday.

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

So guidelines suggest if ONLY on levothyroxine approximately 91mcg per day (around 640mcg per week)

I would reduce and stop NDT to see if it’s causing Afib

DizzyD profile image
DizzyD in reply toSlowDragon

If i reduce or stop NDT low T3 can also trigger afib. Full TFT result for last test are:THS 0.385 = 2.93%

FT4 19.9=79%

FT3 5.7 = 70.27%

TSH result aside, these numbers appear to be ok.

I have been bed bound for over a week, no energy at all, very weak, very cold ( which is not like me) insomnia, brain dead, weak pulse, feels like my body is has totally shut down.

All things considered what do you think is going on here?

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

endo,'increase' of 25mcg levo alternate days bringing dose to 50/75 alternate days

Well you have increased dose levothyroxine so you may need to reduce NDT

Which brand of levothyroxine is the 25mcg?

Full TFT result for last test are:

THS 0.385 = 2.93%

FT4 19.9=79%

FT3 5.7 = 70.27%

Was this test BEFORE increasing dose or 6-8 weeks after increase

DizzyD profile image
DizzyD in reply toSlowDragon

This was AFTER increase 8 wks ago.Increase was based on the following results done in January

TSH 3.47 = 81.42%

FT4 15.9 = 39%

FT3 3.9 = 21.62%

I now on teva brand...back in january i was on a different brand cant recall which one.

When one compares the two test results, there is a drastic difference between them considering such a small increase of levo.

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

Teva brand upsets many many people

First change Teva for alternative

are you taking 50mcg plus 25mcg or a single 75mcg tablet

Teva is only brand that makes 75mcg

Which brand is your 50mcg tablet

DizzyD profile image
DizzyD in reply toSlowDragon

I have teva 50 and 25. I split the 25 an take 62.5 daily. Do you have any info re: how Teva brand adversely effects people? I have gone downhill since starting this brand about 4 wks ago but i did not relate teva as being a possible cause. I have constant unexplained ache discomfort in upper gut area and breathlessness.

I do have small amount of accord brand 50mcg so will have to 1/4 some of them.

SlowDragon do you have any idea as to how long it will take for Teva brand to leave my body?

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

Request new prescription on Monday to replace the Teva

Cut Accord in 1/4 to get 12.5cg daily to add to 50mcg

Use a sharp craft scalpel and store spare 1/4’s for next days

Teva Levo contains mannitol instead of lactose as a filler

Mannitol changes gut biochemistry

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

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. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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.

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

assuming changing brand improves you

Get note added to all future prescriptions “no Teva”

DizzyD profile image
DizzyD in reply toSlowDragon

OMG SlowDragon i have been reading posts re: Teva Poll you so kindly sent me. I so ill since i have been taking Teva, have a variety of symptoms, bedridden as weak as a kitten, so depressed etc. This morning, told my daughter, I might have heart failure!! Thought the teva symptoms were related to previous afib but after reading posts I now aware teva is causing these symtoms. Usually, when afib stops, i revert to being my normal active self. TEVA is the elephant in the room which brought my life to an absolute standstill.

Quite a few people mentioned teva caused palpitations....! In my case palps would definitely trigger afib.

Honestly i cannot thank you enough. Where there was despair, now there is hope! Priceless! Sincere thanks to you slowdragon....!

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

I would either go back to 50mcg Accord now and see if it resolves Afib

Then possibly trial increase to 62.5mcg Accord in few weeks

DizzyD profile image
DizzyD in reply toSlowDragon

I,m not in afib now SlowDragon....just got awful teva side effect symptoms...am bed ridden. Was in afib when blood sample was taken Monday gone. Afib stopped on Tuesday but i still bed bound due to Teva side effects.I was planning to take Accord tomorrow, same as Teva dose i have been taking 62.5 mcg daily.

I been on teva brand 4 weeks, been on 62.5 daily, various brands of levo (along with 30mg NDT) since levo increase 22 Jan.

Is there a specific reason as to why you suggested i trial Accord at a reduced dose of 50mcg and move up to 62.5?

I strongly suspect Teva caused palpitations which in turn triggered afib which lasted for seven days. Afib had never lasted this long before. Teva is the possible causal factor.

SlowDragon profile image
SlowDragonAdministrator in reply toDizzyD

Well it could be the brand or the increase in dose

Or a mix of both

jimh111 profile image
jimh111

NDT can lower TSH dependng on dose. Also, major trauma such as a heart attack can lower TSH, it is classed as 'non-thyroidal illness'. It is thought to be a defence mechanism to protect the body but nobody really knows. It is recommended that thyroid blood tests are not done during periods of major illness as they are unreliable.

DizzyD profile image
DizzyD in reply tojimh111

Hey Jim i had been in constant afib for 5 days and it was still going on when i got recent medicheck test. Same for previous NHS one but afib was more severe. Could this affect TSH results?

DizzyD profile image
DizzyD in reply tojimh111

I have been taking small amount of NDT along with levo for 3yrs. I dont have a thyroid.

jimh111 profile image
jimh111

You fT3 and fT4 are both above average with a lowish TSH. Your afib could be caused by too much hormone, the way to fond out is to drop your NDT intake and see whether it reduces your afib.

SlowDragon profile image
SlowDragonAdministrator in reply tojimh111

I agree with that assessment by jimh111

DizzyD profile image
DizzyD in reply tojimh111

Jim its not really about the afib. Question is could my TSH be unrealiable due to having TFT while i was AFib?

jimh111 profile image
jimh111 in reply toDizzyD

I don't know. Severe cardiac events cause low T3 syndrome but I guess afib is just an irregular heartbeat (even if it can have dire consequences). The point is whether your current hormone dose is contributing to your afib. If so you have difficult choices to make.

DizzyD profile image
DizzyD in reply tojimh111

Thanks Jim I would not be concerned if my afib was just an irregular heartbeat. Mine is extremley symptomatic..tachycardia...heart goes into peak activity mode for 26 hours (longest) HR reaches 185 or beyond just sitting. Low T3 can also trigger afib so i most certainly have a difficult choice to make.

I do suspect TSH is unrealiable because it was done while i was in afib. So my plan is to test hypothesis and get another TFT is 2 weeks, without making any thyroid med changes. Having said that, I will change brand of meds from teva to accord. Thanks toSlowDragon pointing me a certain direction i now found out teva could have contributed to afib.

It,s been a pleasure conversing with you. I really do appreciate your help and advice. Thank you so much for taking the time to read/ reply to my post. Pricelesss!!!

jimh111 profile image
jimh111 in reply toDizzyD

That's more than just afib and purely guessing perhaps bad enough to affect TSH. I had tachycardia after I started using simetihcone to eliminate endocrine disrupting chemicals. I was excited that my experiment worked but had to switch off and calm myself down so as to avoid exacerbating the tachycardia. It's possible there is some sort of similar external factor that affects the efficacy of your hormone treatment and of course the brand of tablet may be a factor.I would reduce your hormone dose if you get tachycardia again, it will at least keep you alive long enough to consider what to do next!

DizzyD profile image
DizzyD

Hi Jim TFT 8 weeks ago prior to 25 levo increase was as follows.TSH 3.47 = 81.42%

FT4 15.9 = 39%

FT3 3.9 = 21.62%

Hence the 25 levo increase which i split and take total of 62.5 levo daily along with 30mg NDT.

Surly, (considering i dont have a thyroid) i very surprised such a small increase could have such a hugh impact on retest result

Retest

TSH 0.285 = 2.93%

TF4 19.9 = 79%

FT3 5.7 = 70.27%

I suspect another variable could be playing havoc with thyroid levels namely, long half life of amoidarone which is very toxic drug, used to treat afib, due to high iodine content that remains in body for way beyond 6 months.

I came off the drug August last year because it pushed my levels over range even after levo decrease. It really messes with conversion of thyroid hormones. Suspect halflife of amiodarone is still doing something every so often.

jimh111 profile image
jimh111 in reply toDizzyD

It could be but a trial reduction of hormone is easy and informative. I don't know much about cardiology but they really shouldn't be using amiodarone for anyone unless there is no alternative.

DizzyD profile image
DizzyD

There was no other alternative Jim due to a massive mistake by cardiologist who coerced me to take Flecainide to treat afib while i had a blocked coronary artery which is a massive NO! NO! After 3 doses of Flec, which could have killed me, red light to hospital (daughter speeding in car) horrific proarrhythmic reaction to med that should never have been prescribed at all. Hence, prescribed amoidarone as last resort. So here i am 12 months later in worse possible situation. Now i cannot be prescribed any medication at all to treat afib. Januery 2020 head of endocrinology actually told me "I have looked at all your thyroid history going back 30 years and found out you have been over treated with levothrozine for far too long which has more than likely damaged your heart........" How right he was.

Ironic isnt it? Now heart medication has messed up my hormone levels good style.

Anyway i have decided to reduce NDT from 30mg to 15mg to era on the side of caution.

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