I've been taking thyroxine for over 20 years for an under active thyroid. Its never giving me any problems with only occasionally my meds being reduced from 100 down to 75 (and then back to 100 a few months later!)
A couple of weeks ago after feeling very unwell - out of breathe, weight loss and anxiety (to name but a few!) routine blood test revealed my thyroid was running high. I'm not sure how long it's been like this as I haven't had a blood test for about 9 months.
I've also had very sore eyes for a while but never thought it was to do with my thyroid.
My GP slightly reduced my meds for approx 3 weeks and my symptoms actually got worse.
My meds have now been reduced again a few days ago (to 50)
I feel so extremely unwell, the anxiety and chronic exhaustion/tiredness (but unable to sleep) is just so overwhelming. I can't cope with daily life and feel a shadow of my former self at the moment.
I'm now on beta blockers to help with some of the symptoms.
My GP has been very casual about it all and just says he'll see me in 6 weeks for another blood test. It was only on my second consultation that I was told I needed to see an optician to get my eyes checked.
If anybody has been through something similar, can I ask how long it took to feel emotionally and physically well again when reducing thyroxine.
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Berylalfreda
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Highly unlikely if you've been on thyroid hormone replacement for 20 years. I doubt your thyroid is running at all. Do you have the exact numbers: results and ranges? If so, post them on here and let's have a look. Then we'll know what we're talking about.
Have you ever had your antibodies tested? You could have had a Hashi's 'hyper' swing.
Ring his secretary and ask for a print-out. It is your legal right to have a copy, if you live in the UK. And without knowing your results, you cannot possibly find out what's going on.
I’m with greygoose all of the evidence in your post suggests that the first reduction in dose was a bad decision, only eclipsed by a second decision to reduce it further. I think your doctor has forgotten what the duty of a doctor is - to treat you so that your symptoms disappear... as opposed to make you ill so that a box can be ticked to say your blood tests are in range. My advice is to return, every day if necessary, or increase the dose back up yourself gradually, returning so regularly that GP can see you improving before his/her eyes. It’s a pity GP has given you beta blockers as you may need help to get off these.
I had the same thing and did private blood test which showed that anti-bodies had developed and attacked the thyroid. Nhs blood tests didn’t show this. Used a company called Thriva. Now taking magnesium and B vitamins and feel so much better.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer 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.
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 important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Low vitamin levels must be improved to optimal levels for good thyroid function
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
see GP and request vitamin and antibodies tested, if not been done
Of
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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
Come back with new post once you get results and ranges
There's recent incorrect obsession by GP's to reduce dose of Levothyroxine to bring TSH levels up. Many, many people on Levothyroxine need TsH extremely low
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.
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)."
I and going through something similar. You can private message me. For a long time I did not know what was wrong with me and doctors dismiss my symptoms. I'm in a rush to get to work but case studies on iatrogenic hypothyroidism by Emmanuel O. Brams if you Google you should be able to find them - 4 brief studies. I literally broke down in tears when I read his first case study because it is exactly what I was going through. I have to rush off to work the glad to provide more info if you want to message me.
One thing I had a very old internist tell me to check my pulse pressure. He said in the days before blood test this is how they determined if you were taking too much thyroid medicine. You simply take your blood pressure and subtract the bottom number from the top number. So far example if your blood pressure is 120 over 80 you would subtract 80 from 120 and get 40. Then you multiply 40 times your pulse rate. So if you check your pulse and it is 60 beats per minute 60 * 40 is 2400. If the resulting number is around 3,200 or higher they used to cut the thyroid medicine as it was too much. This has been 100% accurate for me. Through the months I was cutting medicine my number was ranging between 3600 and 4200. Now 4 months later my number is routinely under 2800. Just I thought I'm not a doctor or claiming this is accurate but just something that helped me tremendously as I went through this without much help from doctors until I found the specialist I'm with now.
So glad you posted this reference. I have ordered a copy of his book since I was unable to get to the full version of his work (only a summary) online.
The endocrinologist at work says it takes six weeks to see a difference after a medication adjustment. I've also read in posts from this site that oftentimes things can get worse before they better. Going through a dose decrease myself at the moment, and while it's almost been a month, am having a rocky time. I find it all VERY distressing.
I've had the same thing after about seven years on Levothyroxine, regular blood tests and dose adjustments when necessary. The first four years, I was fairly ok, but roughly the last three years, I felt as though the Levo was poisoning me- Utter exhaustion, waking several times in the early hours with palpitations and hot flushes, frequent diarrhoea, anxiety breathlessness and always feeling too hot. Luckily somebody brought me back some T3 from abroad. I stopped taking the Levo and after about three weeks, I started to feel my old self again. Gradually the symptoms disappeared and after two months of no medication, I started taking the T3. The symptoms have all gone and I have a bit more energy. Luckily the new GP at my surgery listened to my story and has referred me to a specialist. Unfortunately, she wanted me to try a small dose of Levo and have another blood test , so here we go again with the breathlessness, and oh the dreadful overheating. It's probably not much practical help, but you are not alone. If you can get your GP to refer you to a specialist, maybe you can get your medication corrected. I know it's difficult- the previous GP looked at me helplessly and said that I looked alright and my blood results were all normal. I even felt sorry for her, but it's so hard for someone to know what it feels like. If I had not been able to get a referral this time, I would somehow have got a private consultation.
I have been reducing my dose for the last 8 months and have now gone back on my original dose of 125. I have also had problems with my eyes and now have prisms in my glasses to stop double vision. The optician has said this could have been an effect of the reduced dose, The double vision has now been corrected. I hope to go back to normal now.
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