I'm 39 and have been on thyroxine for about ten years after being hyperthyroid and then reacting to the carbimazole and needing my thyroid to be removed.
I've had two children since my thyroid was removed ten years ago (they are now 4 and 2). Obviously had a few adjustments to my dose with pregnancies. A few months ago I started loosing a lot of hair and I asked my doctor if my dose could be reduced - from 162.5mg to 150mg per day. T4 came down from 25 to 22. That's still very high for me but doctor assured me it would continue to fall... I knew it wouldn't but carried on taking the dose. 6 weeks later I've had another test and my T4 is now 32. I really don't feel well and my hair is falling out in handfuls. I've been extremely stressed and really overwhelmed with everything at home... can this have an effect on T4 levels? I just do not understand how I have reduced my dose for months and yet my T4 has climbed.
Am I going to have a heart attack and die? I just can't afford to feel like this. My husband is in China with work, I have four children to look after and I am just SO stressed all the time. I really need help and my Gp just doesn't seem to understand or have a handle on what's going on.
Thanks for any insight x
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Peaksdreaming
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Welcome to the group. If you could complete your profile (freehand text box)
it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.
Were these tests done at the same lab at the same time of day?
Were the tests done when you were fasting at 9am with last dose of Levo 24 hours before? This is the recommended way of testing to show highest TSH & stable blood levels and is a patient to patient tip. Likely no doctor will ever tell you that.
You haven't mentioned your TSH or FT3 which if NHS likely wasnt even tested. You need 3 tests done at the same time - TSH, FT4 & FT3 to understand what is happening with your thyroid.
Not feeling good may well be due to low or even deficient vitamin levels which are very common when hypo. Being hypo lowers stomach acid meaning you cant absorb vitamin levels from your food.
For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hello Peaksdreaming and welcome to your first post since registering in 2017
T4 - Levothyroxine is basically a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and I would imagine your T4 is high because your ability to convert it into T3 has slowed - which will show in a blood test when we see your actual T3 result and range against your actual T4 reading and range.
Conversion of T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D - inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. It is said that T3 is around 4 times more powerful than T4 :
Some people can get by on T4 only medication.
Some people find that T4 seems to stop working as well as it once did, at some point in time, and find that they need to be prescribed a little bit of T3 - likely just a little dose similar to that which their thyroid once supported them with - to restore their T3/T4 hormonal and health.
Others find they can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Currently your doctor can only prescribe T4 with the option of an anti depressant which doesn't solve anything and the first step will likely be a referred to an endocrinologist once we see the blood test results and ranges.
Your hair loss could be down to low iron - mine was due to stress and anxiety - was a blood test suggested to test for low iron stores and ferritin ?
You are not going to die or have a heart attack - please stop overthinking - though know it's easier said than done. and very common with people suffering thyroid hormone imbalances.
I'm with Graves but post RAI thyroid ablation back in 2005 - so can read mine- or anybody else's thyroid journey by pressing the icon alongside their name in any reply they make and go to their Profile page where you can find everything they have ever written on this open forum.
ALWAYS test thyroid levels early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Hairloss
IMPORTANT to get full iron panel test for anaemia including ferritin
Apart from optimising your vitamin levels, it is essential that you take time for yourself to relax. I found mindfulness extremely helpful but I do not have young children . Can family help with them? Can you employ some help? I found the book by Eckhart Tolle , ‘The Power of Now’ extremely helpful; it helped me overcome the fear of dying when it was discovered I had a blood clot in my brain. You cannot alter your situation but can alter your reactions to it. Hair falling is the result of stress. Lots of walks in green spaces is also very soothing. All the best
Hi Peaksdreaming, I just want to say how very sorry I am for you and for the situation you are in, although of course children are their own reward you must be struggling. You will get through this, I am sure. I was undiagnosed hypothyroid with three young children and a lovely kind GP who thought the tiredness was from overwork, so I know something of how you feel. Will it help to remember your GP is there to support your mental health as well as physical and it's okay to speak with your GP regularly if that helps? Sending you love and hugs and hoping that soon your thyroid problem soon settles down or is well managed.
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how long does it take for t4 to come down after reducing dose?
Should I reduce dose slightly? T3/T4 combination therapy
Test results exactly the same despite increase in T4 
I feel so unwell despite dose increase 
Reduce T4 by how much…?
