Need a smaller dose of Levothyroxine after 5 years?

[Wallacecrew]

Morning all.

Am hoping someone can help with my query. I've been on Levothyroxine 100mcg for several years with no apparent ill effects.

A week ago I woke up at 5am with atrial fibrillation which I haven't had before (well not that I've known about and I'm a retired nurse so very body-aware to the point of hypochondria!) Anyway to cut a long story short, had to have a cardioversion under general anaesthetic to restore my heart to normal rhythm and rate. Was put on beta blockers and anti coagulents, but beta blockers had horrible side effects so have come off them. No evidence of any heart disease on the ecg, but awaiting an echocardiogram to confirm.

For last couple of mornings have felt jittery and light headed about an hour after I've taken the Levo. BP and pulse are normal. Could it be that I suddenly need a smaller dose? I know that AF can be a sign of thyroid overdose. Alternatively, does anyone know if there has been a change to the recent formulation of Actavis?

Seeing GP tomorrow so would like to go armed with some questions. Many thanks for any help.

[SeasideSusie Remembering]

Wallacecrew

I have been taking Actavis only for many years, nothing has changed with that brand.

Ask at your surgery's reception desk for a print out of your results (make sure reference ranges are included) and post them on the forum for members to comment. The results will tell us whether you are taking the correct dose of Levo. Be aware that if your TSH is below range then your GP is going to say this is the cause of your problem, that you are overmedicated. If FT4 and in particular FT3 fall within their reference ranges then you aren't overmedicated.

If you don't have recent blood test results, and your GP asks you to do retest, then when booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

[Wallacecrew in reply to SeasideSusie]

Thank you. As haven't had any problems until last week, I don't have blood results to hand but know they have been fine up until now. Will get a printout when I see GP tomorrow.

[shaws Administrator in reply to Wallacecrew]

What doctors' state as 'normal' may just mean we are somewhere in the range, so we could be low or high in range.

To be well we need a TSH of 1 or lower, and a Free T4 and Free T3 in the upper part of the ranges (the latter two are rarely tested0 and many doctors think that if the TSH is 'somewhere' in the range we're on a sufficient dose but not if we have symptoms.

When optimally medicated we should have no symptoms at all.

[MaisieGray]

When I started having AF, I asked for a referral to a Cardio as I knew something was "not right" - if anything, I'm the opposite of a hypochondriac, if there is an opposite - and my GP had the temerity to say my symptoms were wholly due to my "insisting on being over-medicated" (FT4 and FT3 were always in fact, within reference range) and that any Cardio would reject a referral on that basis. In fact a better informed Cardio, who it turns out, has a far greater knowledge and understanding of thyroid issues than does my GP, was happy to see me, and investigation proved that I have an aortic valve problem which is almost but not quite at the point of requiring surgery, and I now have regular tests to monitor my deterioration. So nothing to do with too much T4/T3. My point being, that there are far more roads leading to atrial fibrillation than just exogenous thyroid hormones - high BP, abnormal heart valves, excessive stimulants such as other meds, caffeine, tobacco, alcohol, sick sinus syndrome, viral infections or stress due to other illnesses or infections, sleep apnea etc, to name just some. As suggested, the starting point should be a full thyroid panel to see exactly what your levels are, rather than guessing you may or may not be over-medicated. Re the beta blocker, why not try a different drug if the first one didn't suit you?

[Wallacecrew in reply to MaisieGray]

Thanks for that. As I said, am awaiting echocardiogram so will see if that show anything. Not keen to pursue the beta blocker route as I'm not hypertensive to start with, so it's dropping my BP and pulse too low and it was the lowest dose of the safest one. Am guessing GP will want to run the thyroid tests again although they have been fine for years. Might ask about B12 and folate as haven't had that done.

[SlowDragon Administrator]

Atrial fibrillation can be linked to LOW FT3

NHS won't usually test FT3

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 if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Wallacecrew]

Thank you. Will get a printout of results when I see GP tomorrow. As I said, haven't had any problems with Levo and annual results have been fine for several years. May be nothing to do with thyroid med but best to pursue all possibilities.

[FancyPants54 in reply to Wallacecrew]

How did you get on? I'm interested as I'm currently experiencing some kind of arrhythmia (I have been diagnosed with AF in the past but not sure this is the same this time). We have to make sure we have a good Ferritin level. Needs to be around 80, not just somewhere in range. GP's never look for that.

I am taking a Beta Blocker since it started before I get some tests on Wednesday. I don't feel very well. It drops my BP rather low, makes no difference to the higher than normal heart rate that I don't like and I'm feeling a bit sick. Not sure if the feeling sick is down to the BB but I wasn't feeling like that before I started taking it.

[Wallacecrew in reply to FancyPants54]

Hi. All was good with my bloods so not thyroid related in my case. Took myself off the beta blockers ( discussed with dr first) as was feeling dreadful with them. It took a few days to get them out of my system. Haven’t had another bout of AF thank goodness. Still waiting for the echocardiogram, but in my case i am sure that cumulative stress over the past few months has played a part. Births, illness and death in family plus lots of driving and not enough sleep. Hope you get sorted soon. If you have to stay on the beta blockers it might be worth taking them last thing at night. At least you won’t feel quite so zombified in the daytime. Good luck!