Hello, first post here after a couple of months reading. I was diagnosed hypothyroid about twelve years ago and given radioactive iodine treatment (and little alternative - I knew very little then and was scared into it by talk of heart attacks, etc). Since then I have been on levthyroxine. My dosage is 100mg; I was put up to 125mg for a short while, but then put down again as my TSH went over the top level and my GP panicked. At the time, I was complicit in this, but down the line and with more information and knowledge I feel that it being high was not necessarily a cause for alarm.
I have high blood pressure and am on losartan 50mg (all dosages are daily, btw). I also have diverticular and IBS and have been intermittently on PPI's - I have asked whether this has affected my absorbtion, and been dismissed out of hand, but I am not so sure. I get bloating and heartburn with this, and although it is not constant I have had it with greater frequency in the last few months. My hair has been thinning. I have brainfog and I have also had increasing tiredness and lethargy as well as some weight gain. I was diagnosed with fibromyalgia, which is strictly speaking correct, but this is a set of symptoms not a cause, and I feel that my GP and the endocrinologist I saw were happy to use this as an end result. Even those doctors who 'invented' the diagnosis in the 70's are now saying that as a set of symptoms its not sufficient just to diagnose. I suspect that my fibromyalgia is rooted in the issues I have been having with my thyroid.
It's also worth mentioning that I have one very bad knee for which I am awaiting replacement and a back problem stemming from old injuries; the knee is very painful, and I am aware this is contributing to the tiredness, but is not the only issue with it.
I have compiled a list of the TSH, free T4 and T3 results over the last eighteen years, and this has shown me that my TSH and free T4 have been, frankly, more than erratic, and I have only two T3 test results in that time. It's also worth noting that I have tried to get a baseline of what my 'normal' levels were prior to this issue developing, but I have very few results dating to before I was first diagnosed, so this has been difficult.
Which, in a roundabout way, brings me to my reason for posting. I asked my GP, whose practise I have been with for three years, to do a full set of tests for me, and she agreed. The results she got back convinced her that no action should be taken. I am not so sure, as I still feel terrible. I have pins and needles in my hands and toes and constantly feel cold. This has been more frequent of late. The tests were done at 11:45am, not first thing as I would have liked, as I had to book into a blood test centre and this was the earliest time available for weeks. I did not take my levothyroxine in the morning.
The results were : -
Coeliac disease screen - normal, no action 0.2 u/ml (0-7range)
Anti-nuclear factor - normal, no action
Anti-nuclear Ab 0.1u/ml (0-9 range)
ENA screen - normal, no action
Autoantibody screen - normal, no action (antinuclear antibodies negative; parietal cell autoantibodies negative; antismooth muscle autoantibod negative; mitochondri antibody screeen test negative; anti liver kidney micro ab lev negative)
Serum oestradiol level - normal, no action 195pmol/l
Serum free T3 level normal, no action 3.8pmol/l (3.1-6.8range)
I also have the haemoglobin and full blood count figures - any questions on these, please ask.
For reference, my previous blood test was July 2022 and my TSH was 1.39, with no freeT4 or T3 tested. I have a baseline from July 2004 for TSH of 0.59, but no free T4 or T3. In fact, my only T3 reading was in September 2009 of 5.1. These are from my records, obtained from my GP, and in some ways they are shocking with the lack of regular testing, particularly for T3, but not surprising, sadly.
Interpretation, opinion and question welcome. Thanks.
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Was RAI first line treatment or were you given antithyroid.
If hypothyroid unlikely to need RAI. The RAI destroys thyroid cells to prevent hyper - & results in hypothyroidism.
If your TSH is over-range, you need an increase. Doctors assume if TSH low you are over medicated or they say “hyper”TSH isn’t reliable in any case.
FT4 - 18.8pmol/l (12-22range)
FT3 - 3.8pmol/l (3.1-6.8range)
The low FT3 your issue. FT4 is good but it’s not converting to FT3.
Folate & ferritin not optimal work on improving these.
If poor conversion is a persistent issue you could press for referral to endocrinologist who in theory has authority to prescribe synthetic liothyronine or LT3 if clinical needed.
This may be a difficult path as the criteria is such that it’s virtually prohibited & many are prevented from being referred because the TSH & FT4 are in range for example.
Some progress from arranging private specialist willing to prescribe Lio or Natural desiccated thyroid. NDT was the original treatment & would contain both (T4 & T3) elements, but has now been entirely replaced but LT4 in mainstream treatment.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
I only started my research into my Graves around 10 years after RAI treatment as I was in an ever decreasing circle of wellness and with no answers from any NHS mainstream department and fell into this amazing forum while researching low ferritin - the only diagnosis I received after over 2 years of going around in circles at my local hospital where all my treatment had occurred.
Looking back at my records I found when discharged from hospital in 2007 I had a T3 of 5.8 I at around 60% through the then range and since, in primary care, been monitored and dosed on just a TSH reading with an occasional T4 reading.
In May 2017 I was refused a T3/T4 blood test on the NHS and refused to leave the doctors room, until she arranged I could have one, through the local hospital if I paid for it, which I did and my T3 was now at 4 and just 25% through the range with a T4 at 100% and when I questioned this the reply was that I was very lucky to have any T3 all !!!
If it wasn't so serious it does read like a Tony Hancock 1/2 hour !!
Most of my research came through the Elaine Moore Graves Disease Foundation website but I started off first by trying to read her very first book Graves Disease - A Practical Guide.
Primary hypothyroidism caused by RAI thyroid ablation is said to be more difficult to treat.
RAI is a slow burn:
RAI is known to trash vitamins and minerals and is also taken up to a lesser degree by other glands and organs in the body.
RAI is known to trigger Sjogren's type symptoms :
RAI is known to trigger symptoms similar to those of fibromyalgia.
These are just a few of the possibly consequences of this treatment option, which is still, I believe, the first and sometimes only option offered, told and very rarely discussed with the unsuspecting patient.
Your results show that you are struggling to convert your T4 - Levothyroxine into T3 - the active hormone that runs all your bodily functions.
This may well improve once your ferritin, folate, B12 and vitamin D are up and maintained at optimal levels but in my experience you will then need to consider adding back in a little T3 to rebalance your T3 andTt4 thyroid hormones.
A fully functioning working thyroid would be supporting you daily wit trace elements of T1.T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T3 is said to be around 4 times more powerful than T4 :
Some people can get by on T4 only :
Some people find they need at some point in time to add back in a little T3 - probably to replace that little bit lost when their thyroid was burnt out in situ with RAI or if for any other reason they have ' lost ' their thyroid, or that T4 doesn't restore their health well.
Some people can't tolerate T4 = Levothyroxine and need to take T3 Liothyronine only :
Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred toas grains, and the original successful treatment for hypothyroidism for over 100 years.
I now self medicate as I was refused both NDT and T3 through my surgery and hospital back in 2018 and am much improved managing myself and running my own blood tests.
It is a massive learning curve and why as a patient to patient led forum and supported by the charity Thyroid UK we will help you too back to better health and well being.
First of all, thank you for your replies and for the advice and comment, which has been useful in showing me I was thinking in the right direction, and also in guiding me forward.
Yes, I was hyperthyroid to begin with, diagnosed with a multi-nodular goitre. I was on carbimazole (5mg) for 12 months before RAI.
Thanks for the information and advice regarding supplements and vitamin levels. After looking at things on here and at my last results, I have started on Thorne Basic B and BetterYou D-3000 oral spray. I will, of course, remember to stop seven days before any subsequent blood tests!
My weight is currently 101.6kg (I had to google to convert from st/lbs).
I do have some more blood work which may be informative: -
HbA1C level 39mmol/mol
Rheumatoid factor 13
Serum C reactive protein level <1mg/L
Haemoglobin estimation 144g/l
Total white cell count 5.5 10*9/L
RBC 4.89 10*12/L
Haematocrit 0.43
MCV 87.1fL
MCH 29.4pg
MCHC 338g/L
Red blood cell distribution width 12.5%
Paltelet Count 243 10*9/L
Mean platelet volume 11.8fL
Platelet distribution width 15%
Neutrophil count 3.2 10*9/L
Lymphocyte count 1.8 10*9/L
Monocyte count 0.4 10*9/L
Eosinophil count 0.1 10*9/L
Basophil Count 0 10*9/L
Immature Granulocytes 0.01 10*9/L
Percentage nucleated RBCs 0%
I'm not sure which of these would be relevant, so have included the lot.
I did ask my GP about referral to an endcrinologist when she did the full blood test, but as it was 'normal' she said no more about it. I will go back to her. I think it will be almost impossible to get T3 through this route as the endocrinologist I originally saw was next to useless. About six or seven years ago I paid to go private and ended up seeing her again; her only comment was to tell me I was perimenopausal and this was responsible for my symptoms (...). She is still the incumbent at my local hospital.
I suspect that the private blood test and self-medication route may be the end result, but I will still try.
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New blood test.. Am I hyper now? This time the Gp will give me a referral I hope..
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