My GP. Reduced my dose of Levothyroxine from 100mcgs, which I had taken for 13 years, to 50 mags overnight. She said my TSH was off the scale. Since the reduction last October I have had a recurring flu virus 5 times. Does anyone know if this may be a side effect fro the sudden and drastic reduction of the Levothyroxine dose?
I would be interested to hear opinions.
It is a large decrease, and you might well be under dosed now, making you hypothyroid which in turn will lower the effectiveness of your immune system among other things.
It might be helpful for you to post on here your blood test results that prompted the decrease as well as any you’ve had since.
Unfortunately here in the U.K. they don’t tell you your results. All I was told was that my TSH was off the scale and I must cut my Levothyroxine dose by half!!!! I will ask if I can have the full results and if they let me have them I will happily post them here.
We all have a legal right in the UK to have a full print out of our blood tests and results. Call your surgery and put in a request for them. You could also ask for a full history print out, relating to all your thyroid results, so you can compare the results with how you felt at that time.
Forgot to say, when taking thyroid medication, either levo or NDT, the TSH is more unreliable a test than ever, as the TSH automatically goes down when one is on treatment.
My TSH has been something like 0.01 for many many years. However, I self medicate, thank goodness, so no one can stop or reduce my meds to satisfy their ignorance.
Bet your doctor only tested the TSH. In which case, she has no real idea if any reduction was necessary, let alone such a stupidly drastic one, which is bound to affect all aspects of your health. You're only over-medicated if your FT3 is over-range.
Thank you for your reply. I was told my TSH was off the scale and that I should cut my Levothyroxine dose by half straight away. I have felt dreadful ever since!!!!!
Well, you would do. And, your doctor is an idiot, that's clear. 'Off the scale' is neither a medical nor a scientific term, what you want are the actual numbers: results and ranges. And, you need to know if anything else was tested. So, ask at reception for a print-out of your results - if you live in the UK, it's your legal right to have one. Don't let this ignoramus walk all over you and ruin your health. Learn about your disease and stand up for yourself.
I am in the U.K. and I will ask for a print out and see what that brings. Thank you so much for your helpful comments.
You're welcome. 
I see mine online .All GPs should by now have this facility, some do not but ask if available.
Just to put this into perspective, I was made to reduce my levothyroxine from 100 mcg to 75 mcg every other day (so a net reduction of 12.5 mcg!!) and I was as sick as a dog after a couple of months. My TSH was suppressed and T4 perfectly okay before they started messing about! A reduction of 50mcg is far too much and an indication that your GP is an idiot and has no idea of thyroid treatment!
TSH is not a good indicator of thyroid levels anyway, you need the free T4 and free T3 to check your treatment status. TSH is being bashed around as the gold standard of thyroid health for years now, and titrating treatment to TSH is making people sick.
Ring your surgery and get a print out of your results (its your legal right) and if your free T4 and T3 are okay, I would insist to go back on the original dose. Don't get bullied and fight back, it is your health and wellbeing that's being compromised. Good luck!
Thank you for your help but unfortunately I don’t know enough about the levels and numbers to know if my free T4 and T3 are okay. How can I find out what are the levels that are important for these 2 factors.
Hi, you need to get a print out of your blood test, where they assessed your thyroid function - its your legal right to have a copy of that! Then post the results here and people will advise you what to do next. You are most likely under-treated now and that reduction was far too big in any case (and irresponsible to say the least).
If you get your blood results post on here and the many experts will tell you exactly what they mean. This is what I do!
Plus, If you only have had your TSH tested by GP- and they refuse to check T4 and T3, you can get private blood tests or there are on line home test kits- medichecks I think I’ve heard everyone mention. However, first request should be via GP.
Am sure others will be along to help.
I’m newly diagnosed and have had to go private / self funding to get dose increase but hopefully you will have better luck with your GP. Maybe book in with another at your practice?? Or if you’ve had one before that you feel might be more open to listening to you??
Thank you so much that is really good advice. I didn't know whether or not posting my test results on here would be acceptable. I will definitely do that as since the dose has been halved I've had virus after virus and my health has been quite poor. I am grateful to have found a site where I can get help and support. In 2000 after having experienced severe palpitations, shaking hands, swollen ankles and losing a stone in weeks I was diagnosed with Hyperthyroidism. After 2 years on medication called Carbimazole I was told I then had Hypothyroidism. My then GP told me to stop the medication and my thyroid levels, I was told were fine! In 2007after a blood test for something else I was diagnosed with Hypothyroidism again and prescribed 100mcgs of Levothyroxine. In 2012 I experienced symptoms of extreme fatigue weight gain and general malaise. I was told to increase my Levo to 125mcgs per day. I felt amazing the best I'd felt in years. I lost the weight I had gained etc. Regular blood tests showed I was over medicated TSH wise. However my then GP was amazing listened to me and we agreed on 100mcgs per day and 125mcgs every third day. That has kept me feeling fine until October last year when I was having fatigue symptoms again. Saw a new GP, as I've moved since 2012 she did a blood test and said TSH is undetectable drop the 25mcgs on the third day and have another blood test in January. I had the blood test and that's when I was told TSH undetectable cut the Levo dose from 100mcgs to 50mcgs immediately!! I've not felt right since.
Appalling ignorance from the last GP. Prof A D Toft recently did an article in Pulse , the magazine for doctors on the treatment of hypothyroidism. He is now retired but continues to publish on the need to modify guidelines and reassess the way it is treated e.g. Midgley at all. BMC Endocrine Disorders 2019 19:37 doi.org/10.1186/s12902-019-.... Try and get the Pulse article from thyroid UK. He believes the dangers of suppressed TSH are greatly exaggerated. However, I think you need to see a good Endocrinologist. The only one I know is in London and has now gone wholly private - he used to be at the Royal Free Hospital.
Thank you so much. I will try and get hold of the ‘Pulse’ article. I have asked to be referred to an endocrinologist but my G.P. Insists endocrinologists are not interested in thyroid issues and my symptoms are not severe enough so it would be a waste of time! I appreciate all the positive help and support I have received from this group.
just watch out which endocrinologist you are seeing, there are some real duffers out there. Thyroid UK have a list of thyroid friendly endocrinologists, might be worth to have a look on there if you want to make a choice.
Thank you for your advice I will definitely research the thyroid friendly ones .
Strongly recommend getting hold of these results from when on 100mcg
Highly unlikely you needed dose reduction at all
Just testing TSH is completely inadequate and should NEVER reduce dose based just on TSH
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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
Post about access to your medical record ...if they are not helpful
healthunlocked.com/thyroidu...
Even if results did show you needed a dose reduction, it needs to be done in tiny amount (eg 100/75 alternate days...or even 100/100/75)
Your results now show you are very under medicated
Post from 10 months ago healthunlocked.com/thyroidu...
Get hold of all your results
Your GP is making you very very unwell
That’s how I feel but I am really struggling to get that across!
It will take you a long time to regain your health if you continue to let your doctor keep you ill.
Does reduction of carbimazole affects joints?
Does alternating higher/lower doses of Levothyroxine on alternate days affect TSH?
Massive reduction in thyroxine dose
Levo reduction and joint pain
