Hi I’m very new to this site, even though have suffered for 34 years with Graves and now Hashimoto. Am waiting for emailed copy of test results, the only result given over phone was T4 which was 16 ?
Have been under active for a long time and am on 125 mg of levothyroxine, along with symptoms such as insomnia and static weight (too much) just curious are these numbers normal, any advice very welcome
Dancesaver
"Normal" just means somewhere within the reference range, what we need is for our level to be optimal and relieve our symptoms.
We can't comment on your result without the reference range, ranges vary from lab to lab, so when you have the copy of your results the ranges should also be there so post results with ranges and we can help.
If all that was tested was FT4 (that’s my best guess for something that came back with a result of 16) then that blood test isn’t telling you or your doctor very much about whether your treatment is optimal.
We generally advise here that you need at least TSH, FT4 and FT3 to know what’s happening. But many GPs don’t seem to know that or are even prevented by their local lab for getting a result for FT3 if the TSH and FT4 results are in range.
It might be worth considering private testing if you can afford it (or can’t persuade your doctor to do slightly more extensive testing). Have a look here: thyroiduk.org/help-and-supp...
Welcome to the forum Dancesaver!Do post your results (with ranges in brackets) as soon as you get a copy from your GP, as members can then give better advice re optimising your thyroid levels. Have you ever had key vitamins tested (ferritin, folate, VitD and VitB12)? Having these optimal is important to overall thyroid health.
Hello Dancesaver and welcome to the forum :
Reading your back history it seems Graves was diagnosed after the birth of your first child :
You refused RAI thyroid ablation and your doctor prescribed T4 Levothyroxine ?
At some point in time you were diagnosed with Hashimoto's :
Both Graves and Hashimoto's are auto immune diseases, but not treated the same way - Graves is said to be life threatening if not treated with Anti Thyroid drugs, such as Carbimazole or PTU, whereas Hashimoto's is treated with T4 and just attacks the thyroid.
I wonder if your Graves burnt itself out ?? - do you have any positive and over range antibody blood tests as these were likely done as the medical evidence of diagnosis.
A score of 16, or anything, means very little without the range this number comes from.
In order to answer we do need to see a thyroid blood test that includes a TSH, T3 and T4 blood test and range - you can arrange this yourself if your doctor isn't able to help you.
The body runs on T3 and not T4 - Levothyroxine.
Your ability to convert the T4 into T3 can be compromised by low vitamins and minerals, inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing, so whilst we can't turn back to clock we can do something about most things.
So to get a complete picture of what's going on a fuller thyroid panel to include ferritin, folate, B12 and vitamins D plus antibodies and inflammation, along with the TSH, T3 and T4 is another option you may like to consider.
If you go into Thyroid UK - thyroiduk.org you will find a list of private companies who can run the relevant blood tests for you, with some offering a nurse home visit to draw your blood, and when you have the results you will be talked through what it all mean and what you can do to help yourself.
Thank you for your time and helpful reply. I was on carbimazole during Graves period. 1988-2010 when Hashimoto was diagnosed and started on levothyroxine 25mg which has now increased to 125mg I will most definitely look into other clinics for further testing. Thank you
Ah, well, that makes more sense then - as AT drugs should only be prescribed after there is the medical evidence of positive and over range Graves antibodies, even way back then, I would imagine :
I was diagnosed with Graves in 2005 and despite the fact the Carbimazole suited me well I was told it was too dangerous to stay on long term and that I was to have RAI thyroid ablation the following year - a treatment I deeply regret - but I knew nothing back then and only started my learning curve when I found this forum in around 2015.
I guess I'm a bit like a Humpty Dumpty as I 've tried to put myself back together again as all the kings horses and all the king's men didn't seem to have any answers as to my continued ill health.
There is no cure for Graves, it's said to be stress and anxiety driven and likely there is a genetic predisposition with someone in your family, maybe a generation away from you, with a thyroid health issue.
There are many forum members here on long term AT medication which in all honesty has to be best option for very many patients, it's a question of degree, like most things.
But unfortunately this is the most expensive treatment option and probably why it's not even mentioned to many Graves patients under endocrinologists following hospital guidelines.
As why would anyone loose a major gland because of an auto immune disease - and being flipped into hypothyroidism can be equally disabling, and in many cases worse, due to the lack of thyroid hormone replacement options within the NHS.
Yes, best to know what's going on :
Both Graves and Hashimoto's antibodies will wax and wane throughout one's life, but since Hashimoto's only attacks the thyroid, once the thyroid gland becomes disabled this AI disease dies with the gland whereas Graves can continue in whichever form you know it.
P.S. You may like to read around Graves as we now have a dedicated website thanks to the research of a fellow Graves sufferer - Elaine Moore who is now a leading authority and has a world wide following - elaine-moore.com
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