Hi, I spoke to a patient volunteer on a thyroid disorder helpline today as I'm worried that I'm taking too high a doze of Levothyroxine due to symptoms (anxiety, sweating, weight loss, agitation, diarrhoea etc). She said that if my doze was too high, my body would just excrete the excess in my urine, therefore the symptoms I'm suffering can't be due to too high a doze of medication. Is this true??
Levothyroxine overdoze query: Hi, I spoke to a... - Thyroid UK
Levothyroxine overdoze query
This is dreadful, utter nonsense. If this was so nobody would ever be hyperthyroid. It does seem your dose is too high, I would skip a couple of days tablets and then reduce. It would be useful to have a blood test but I'd drop your level first. All your symptoms are consistent with too high a dose. It coudl be that you have autoimmune hypothyroidism and your thyroid is flaring up at the moment.
Was this thyroid disorder helpline part of the NHS? If so you should report this incorrect advice before someone is harmed.
Thanks for your reply. I have reduced my back down to what it was before a couple of weeks ago, but symptoms are persisting. Do you think it's better to cut out Levothyroxine completely for a couple of days in the hope that my hormone levels will drop back down to more comfortable levels. I spoke to a pharmacist who said that it could take a few weeks for symptoms to subside!
Ideally get blood test done before changing dose
Do you have Hashimoto's? Also called autoimmune thyroid disease diagnosed by high thyroid antibodies
If so you can have temporary Hashimoto's flares when Thyroid dumps load of hormones in blood and you temporarily feel hyper
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4 at same time plus vitamins
Private tests are available
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, and T3 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
If you have Hashimoto's then many find adopting strictly gluten free diet helps reduce flares.
Thanks for your advice. Are the finger prick tests as reliable as venepuncture?
Varies from person to person. Some people manage the self-administered fingerprick procedure ... others have either found it a nightmare and gone on to paying for a blood draw or chose that in the first place.
Personally I chose to pay the extra for the Medichecks blood draw!
Good grief, what dangerous nonsense she is peddling. Which organisation is behind this thyroid disorder helpline? I think it should be pointed out to the organisers that incorrect and potentially dangerous information is being given to callers.
Ha ha! It was a volunteer patient that I got on a list given by the British Thyroid Foundation. She did sound quite old and possibly a bit out of touch
It might help if you were able to tell us more about your dosing. What dose were you on? What did you change to? Why was this change made?
[ A more general point: Public discussion, as here, is subjected to review by anyone else who reads it. One-to-one discussions - whether between patients, or patient-health professional - are not.
We all make mistakes. At least, I do. Knowing that someone can tell me I am wrong is as it should be, as it needs to be. ]
Thanks for your reply helvella. I was diagnosed with hypothyroidism about 10 years ago in my early 50s. I was stabilised on 125mcg of Levothyroxine. My annual TSH results were always in the 1s. However, towards the end of 2017, my TSH had crept up into the 2s and my GP said I could try increasing my Levothyroxine to 150mcg daily. Around six weeks later, my TSH was back down in the 1s. I felt OK for a while, then in mid-January I developed horrible symptoms of anxiety, agitation, confusion, sweating, tremours, weight loss, nausea, diarrhoea, exhaustion. It took me a while to realise that these were typical symptoms of hyperthyroidism, and I only reduced my doze back down to 125mcg around the beginning of March. However, these horrible symptoms are still persisting. I spoke to a very helpful pharmacist today who said that he thought because the symptoms had taken a while to creep up on me, they could take a few weeks to edge back down. What do you think? Would be very grateful for your thoughts.
I agree that it could take quite a while to drop again - if you do not take it into your own hands.
Heavy-handed dose adjustments are one of the many issues I have strong views on. Personal experience is that 100 micrograms is too little; 125 micrograms is too much. Therefore I take 112.5 a day!
Without even splitting a tablet, you can adjust by as little as about 4 micrograms a day - just having one extra 25 tablet once a week! (I prefer trying to get as even a dose as possible.)
In your case, I might skip for a day or two. Then perhaps return at 100 for a while before going back to 125. But this is out of utter ignorance! Not because I have a good understanding. Important to take into account how you feel day by day. And bear in mind that the peak of T3 in your blood from taking T4 tablets is about 48 hours later! Not easy...
By the way, when your dose changed, did the make of levothyroxine also change?
And what time of day did you have your blood drawn for your annual test?
TSH is highest in the very early hours, and drops slowly. Just changing time of day can make a significant difference.
I'm not sure if the make of Levothyroxine changed when the doze changed I'm afraid. Can that make a difference? I think the make varies regularly and at the moment my 100mcg tablets are by one manufacturer and my 25mcg are by another! However, my blood was drawn mid-afternoon when it was last tested. I'll maybe get some private blood tests done when my doze has been stabilised. Thanks Helvella
People do find that different makes affect them differently. That includes me!
In itself, it doesn't mean one is better than another, just that one seems better in some way or another. Swapping randomly depending on what is supplied really can upset many of us.
This page shows the four formulations that are available in the UK:
Have you had thyroid antibodies tested? We're they raised?
No Susie, I've never had my thyroid antibodies tested. My GP only tests my TSH annually. Should I get my antibodies tested, and what are the implications??
If antibodies are raised it would confirm Hashimoto's aka autoimmune thyroid disease, which is where antibodies attack the thyroid and gradually destroy it. With Hashi's, the antibodies fluctuate and this can cause swings from hypo to hyper-type symptoms. The symptoms you mention in your opening post are quite typical of a Hashi's swing, so it might be a good idea to get TPO and TG antibody tested to rule Hashi's out (or in).
No, it's absolutely not true. However, you can have similar symptoms from being overmedicated or from having adrenal problems, or less than optimal vitamin and mineral levels. You nee dto know your TSH, free T3, free T4, ferritin, B12, folate and D3 for starters - and hte [person on that "helpline" needs to be retrained.
Judthepud, I agree with others that suggest you can go off all meds for a few days. Levothyroxine is slow acting, and has a long half-life (6-ish days), so it takes a while to wash out of your system. You probably won't be completely stable in the new dose for 6 weeks or so.
I think Angel of the North makes a good point that even though this is probably over medication, it could be other things related to being on a wrong dose for some time.
I'm alarmed to hear that all you've had is annual TSH tests This is leaving a lot up to guess work. It would be great to have a full thyroid panel: TSH, freeT4, freeT3, and both kinds of anti body. Even better to have vitamins as well: vit D, vit B12, ferritin, folate. This will give you a complete picture of what's going on! Your GP should be able to do most of these. Although you should stay on the same dose for 6 weeks before getting the thyroid tests.
Judthepud Can you check your private messages.