I have been unwell from the middle of June starting with numerous fainting episodes which landed me in hospital three times for two weeks. It was out down to heart rhythm irregularities. I have had an under active thyroid for 25 years and for many years have been on a dose of 150mg with no trouble. On discharge from my last hospital stay my blood test showed my TSH to be 0.19 and T4 31.2. So they reduced my Levothyroxine dose to 100 mg My doctor then reduced me again to 50/75 on alternate days. After two weeks I felt dreadful.A month after this dose I demanded a further blood test and my TSH was 8.92 and T4 11.2 and T3 3.4 My dose has now gone back up to 100 mg and after two weeks I do feel much better but by no means normal. Will it take time to get back on an even keel.. I would be grateful for any advice as I have been unwell for so long.
Over medicated to undermedicated: I have been... - Thyroid UK
Over medicated to undermedicated
You need to include reference ranges with those lab results as they vary from lab to lab.
Levo is usually decreased by no more than 25 mcg at a time, and then you are retested after 6-8 weeks.
Do I understand it correctly that you were reduced from 150 to 100 mcg in one go, and then to 75/50 on alternate days without further testing??? That is complete madness!!!
This could easily wreak havoc on your body.
Your doctors don´t seem to know much about thyroid disease.
Even without reference ranges, it would seem safe to say you are now very hypothyroid.
If you were indeed overmedicated to begin with, the most rational thing to do would be to reduce levo by 12.5 or possibly 25 mcg (no more), then hold it there for 6-8 weeks and retest. If on levo only, you most likely need high in range FT4 to ensure adequate T4 to T3 conversion. The TSH should be <1 when optimally treated.
PS. Yes, it will most likely take some time to feel well again since T4 is a slow-acting storage hormone. But the fact that you already feel better two weeks after a dose increase is a good sign. Give it time, and don´t let your doctor decrease it again or tell you to stay on a dose where you don´t feel optimal.
Hi - in your earlier post SlowDragon posted good suggestions. Did you manage to carry them out ?
Click onto LilyTowers and you can see your previous post ...🌻
Thank you for pointing this out! I personally find it a bit annoying when I spend time commenting on someone´s post, only to discover the person in question has already posted the same or a similar question and received advice and guidance from others. This happens surprisingly often.
See below!!
I am SO sorry. I did post the question a little while ago and got no replies. I am new and probably I am doing something wrong. I do apologise if you wrote giving me advice but I kept looking but didn’t see anything so I thought I would try again.
Did you click onto your username in blue - above. There you will see you did have an answer !
No I didn’t. So sorry. I really didn’t know the form. I am an old pensioner and not very up with technology. Obviously I didn’t do very well.
The most common cause of hypothyroidism in the UK and other western countries is autoimmune issues. In this condition the immune system decides that the thyroid is an enemy and it must be destroyed. When thyroid cells are attacked they release their thyroid hormone contents into the bloodstream. This raises the levels of Free T4 and Free T3, and these higher levels of thyroid hormones cause the TSH to drop in response.
Attacks on the thyroid by the immune system tend to come and go and they may last hours, days, or weeks or even longer. But eventually things calm down, thyroid hormone levels drop, TSH rises - until next time. Each time these attacks on the thyroid happen your thyroid becomes a bit more damaged and you become a bit more hypothyroid.
If people don't know what is happening and don't recognise the symptoms then it can be very alarming, and the symptoms can be very unpleasant. It doesn't help that doctors will only test a lot of patients once a year. So the patient might get their dose of Levo reduced because the doctor thinks the patient "has become hyperthyroid" and then it takes the patient months sometimes to get the dose of Levo raised to the previous level.
Please note that someone with autoimmune hypothyroidism can't become hyperthyroid, no matter what doctors tell the patient. They can be over-medicated with Levo or other thyroid hormones. And they can show high levels of thyroid hormones during an immune system attack. But neither of those situations are the same as being hyperthyroid. The thyroid can't renew itself.
If you have a repeat of the same symptoms you had in June, just stop taking your Levothyroxine until you start to feel a tiny bit hypothyroid then restart your Levo at a slightly lower level than you were taking before you stopped. After a while you may have to raise it back to your previous level.
If you can learn to interpret your own symptoms and understand what is happening to your body then you can manage your Levo dose without having it dropped for months by a doctor.
In the meantime, it would be worth keeping records of your thyroid hormone levels and your TSH for yourself. It is also possible to get them tested with just a finger-prick test and the results are sent to you not your GP - you don't even need to see a doctor. See this link :
thyroiduk.org/getting-a-dia...
Don't forget to use the discount code to get 10% off.
If you want help on the results then post them in a new post and ask for feedback.
If you do start managing your own hypothyroidism as much as possible then you need to start keeping good records. So, if you stop taking your Levo or change your dose then you must keep records of when you did this and what you changed.
You might want to start keeping records of your basal body temperature (i.e. your temperature before you even get out of bed in the morning), your pulse and your blood pressure.
It is also worth keeping records of any symptoms you have, and how bad they are (score them out of 5 or 10). Lists of common hypothyroidism symptoms are given in these links :
thyroiduk.org/signs-symptom...
Same list, different format :
I understand - thank you. I think what happened in hospital that they gave me my dose correctly in the morning well before food. For the last 25 years I had been taking it after breakfast which obviously means I wasn’t getting my full dose of 150. I now know how wrong this was but I had always done that. Suddenly I became over medicated and that is when all the trouble started. Thank you so much for helping me and explaining things.
Lily
When you reply to someone click onto the Blue REPLY button so the person receives an alert. humanbean has now been been alerted and will know you have responded !
You are doing just fine ! I am an old pensioner too - plenty of us here - so you are in good company 🥰
It's not surprising you don't feel well. It is even more unsurprising that due to your TSH 0.19 the assumption was your levo dose was too high. Why are these medical personnel so unknowledgeable about levothyroxine and only go by a TSH result which is from the pituitary gland and not the thyroid gland.
I was glad to stop levothyroxine as it gave me horrendous palpitations.
When newly diagnosed we are quite unaware that the medical professionals seem to know less than us. On this forum, step by step, we can improve our health despite what doctors recommend.
When the medical professionals adjust our dose (on which we felt well with no symptoms) they try to 'fit' us into a range. They appear to think that if TSH is very low that we're on too much of thyroid hormones, so reduce our dose and then it backfires upon us and we are symptomatic again.
Remember to follow this procedure when going for blood tests for thyroid hormones. Always get the very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. This help to prevent us getting our dose lowered.
The medical professionals seem to forget that TSH (thyroid stimulating hormone) isn't a hormone replacement - it is from the pituitary gland and it rises when our thyroid hormones aren't being produced, thus levo (T4) or other thyroid hormone replacements are taken.
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