I'm new here and trying to understand my blood test results after total thyroidectomy and replacement on levothyroxine.
My TSH is low (0.13) and my T4 is high(21.9) and I have really high thyroglobulin levels (216) and borderline peroxidase (33.7). I'm struggling with a lot of symptoms but these seem to be both hyper and hypo and I've put on LOADS of weight.
Am I right in thinking I'm on too high a dose? I thought weight gain would indicate me being on too low a dose? I'm so confused.
For context, I was diagnosed with Graves Disease which did not respond well to carbimazole, and consequentially had my thyroid gland removed in 2017. I have felt consistently unwell ever since having it removed (muscle pains, fatigue, rapid weight gain despite not eating that much, headaches, etc etc).
Also for context, I'm a 38 year old female, I'm 5 foot 1 tall and weigh just under 12 stone and am on a dose of 125 levothyroxine.
These results are from a private clinic as I have got to the point where the relationship with my GP is awful (she has shouted at me and made me cry). I have a telephone appointment with her tomorrow and wanted to see if any of you could help me with understanding my results a bit before I speak to her.
Many, many thanks in advance, x
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IsaacKye
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Some people who’ve had thyroid removed need to take t3 either in the form of liothyronine or NDT. Looks like your free t3 level has not been measured but I suspect it is low. I would ask for a referral to an endocrinologist when you next speak to gp. Insist your symptoms relate to your thyroid issues and be persistent- don’t let her bully you with her ignorance. It is possible an endocrinologist will prescribe liothyronine on the nhs -worth a try. In the meantime I suggest you get a full blood test privately to measure ft4, ft3, tsh, ferritin, vitamins d, b9, b12. Medichecks do such a test. Then post results on here for advice on next step.
I purchased the full thyroid test from medichecks. My T3 was normal and smack bang in the middle of normal so I don't it's that (which surprised me as I thought it would be). My ferratin was good as was my B12, my vit.D was on the low side of normal and I take vitamins for that so will up my dose.
I'll try to see if I can get referred to the endo but pretty sure she'll fob me off
So sorry, missed your reply earlier! My blood test was at 11:30am (they informed me after booking my test that it should be in the morning). I was told to take my levothyroxine in the morning as normal but didn’t have anything to eat or drink apart from the water I swallowed my tablet with.
I’ve been tested for coeliac twice and it has come back negative. I do think I have an adverse reaction to gluten though -so that’s a good shout to start cutting that out - thanks so much.
My TSH is low (0.13) and my T4 is high(21.9) and I have really high thyroglobulin levels (216) and borderline peroxidase (33.7)
So your TSH would have been higher at 8-9am
Ft4 result is false high if you took levothyroxine before test
ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working, hence essential to regularly retest vitamin D, folate, ferritin and B12
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
As your coeliac result is negative you can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
A fully functioning working thyroid would be supporting you daily with T1.T2, and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 is Levothyroxine and a storage hormone that needs to be converted by your body into T3 which is the active hormone that runs the body and is said to be about 4 times more powerful than T4 with the average person needing to convert / find / utilise around 50 T3 daily just to function.
Your own ability to convert the T4 into T3 can be compromised by low vitamins and minerals, especially ferritin, folate, B12 and vitamin D. and we need these at optimum levels, not just somewhere in the NHS range, and you may likely need to supplement these yourself.
When hypothyroid no matter how well and " clean " you eat, there is a tendency to have a slow digestion and this in turns means you will likely have a slower metabolism and struggle to extract these essential nutrients from your food,
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional psychological and spiritual well being, your inner central heating system and your metabolism.
When on T4 only medication we tend to feel at our best when your T4 is in the top quadrant of the range because in theory this should convert to a higher T3 and it is too low a T3 for you, that causes symptoms of hypothyroidism, just as too high a level of T3 may give you symptoms of hyperthyroidism - but you cannot " Go Hyper " as you are Primary Hypothyroid and without a thyroid.
It is essential that your are dosed and monitored on your T3 and T4 blood test results and not a TSH though I am fully aware the in primary care this is all you may have had as this self same situation happened to me.
The TSH used in isolation, once on thyroid hormone replacement is the least important of all three readings with T3 being the most important blood test reading of the three.
Graves is an autoimmune disease, and there can be genetic predisposition, maybe a generation away from you having some thyroid health issues.
It can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one, or simply seem to just happen " out of the blue " :
When your immune system is triggered, Graves starts to attack your body and when and if it attacks your thyroid it is because the thyroid is so precious and a major vital gland that the symptoms expressed are serious and you need medical intervention.
I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI, and hypothyroidism. I was well on the AT medication and deeply regret having RAI treatment but wasn't given an options and didn't know anything .
I have been unwell since RAI and luckily found this amazing forum in around 2015 and have put myself back together as I found no help nor understanding within the NHS system.
I now self medicate and arrange my own private blood tests for the appropriate analysis and buy my own full spectrum thyroid hormone replacement and am much improved.
Not sure how big a nut this shell is from, but you too can crack it, with a bit of reading up and following the advice of fellow forum members.
2 books that helped in my understanding of my situation :
Your thyroid and How To Keep It Healthy written by a doctor who has hypothyroidism Barry Durrant-Peatfield:
Graves Disease A Practical Guide - written by Elaine Moore who has Graves Disease and went through RAI and finding no help with her continued ill health started researching this poorly understood and badly treated AI disease herself,
Elaine now has several published books and a world wide following on her website dedicated to Graves sufferers, family and friends throughout the World.
I'm pretty sure my graves disease was triggered by pregnancy as a few days after I gave birth to my son I was 4 pounds lighter than before I got pregnant and had lost a dress size!🤣 I was very ill with my graves by the time I was diagnosed - I went to the GP 3 times before she agreed to test my thyroid (my aunt, and great grandmother on one side had it and my grandmother on the other side). By the time I saw the endo she said my levels were so high it was like I was running a marathon whilst sitting down. I had thyroid eye disease too, luckily not too bad and chose not to have radioactive iodine as I read somewhere it can make thyroid eye disease worse.
I've been doing my research over the last year and after asking for the blood tests from my GP on vitamins and minerals realised I was low in folate, B12 and Vit.D. I've been taking the highest dosage possible since then (it's probably been about 6 months) and have managed to get them up to the following levels:
Ferritin - 3.5
Folate Serum - 7.9
B12 Active - 135
D - 61
I'm wondering if my levothyroxine is working better now and I've somehow gone to the other extreme as I'm sweating, am getting a tremor etc.
I was really worried about my T3 and had a specific test from a private endo 2 years ago to test my absorption and it came back okay and my medichecks test showed my current levels to be 4.3.
I feel like I'm stuck in a chicken and egg cycle - I'm taking the vitamins as having no thyroid means I'm low in specific vitamins but then also my body can't absorb them.
I had tests for celiac disease before diagnosis in 2014 and then again about a year ago and they came back negative - I do however feel like I am sensitive to gluten (diarrhoea) so wouldn't be surprised if that is an issue.
OK then - can you add ranges on all your results please as they are pretty meaningless otherwise :
Yes you are right if any Graves eye issues, RAI is a No No -
My original symptoms were dry gritty eyes, exhaustion and insomnia, and the AT medication suited me fine but after RAI I've had many issues with me eyes, no saliva, and my whole body seemingly " drying up " . After over 2 years of various O/P appointments and referred to as a conundrum by my doctor I started looking into Graves and RAI consequences and found my symptoms all detailed in Elaine Moore's first book :
Rule of thumb we should be aiming for optimal so a good 50% + through ranges but again it all depends as some of the ranges are too wide to be sensible :
Check out the answers on vitamins and minerals if SlowDragon doesn't pick you up as SD asked earlier about these ranges.
So, ferritin needs to be over 70 for thyroid hormone to work effectively -
I know I feel better with my ferritin at around 100 :
I aim for folate at around 20 : active B12 70 + : and vitamin D at around 100 :
Your T4 is around 91 % and your T3 at around 32 % through the ranges :
The accepted conversion ratio when on T4 only medication is said to be 1 / 3.50 - 4.50 T3 / T4 with most people preferring to come in at around 4 or under :
So find how well you are converting the T4 into T3 you simply divide the T3 into the T4 and I'm getting 5.10 - so you are not converting well the T4 into T3 and going out from the accepted range.
Optimal vitamins and minerals will help with conversion :
Realistically though, since you haven't a thyroid you have lost your own T3 thyroid hormone production and the logical answer is to lower your T4 a little and add a little synthetic T3 - Liothyronine.
If you reread my previous reply, by not replacing your thyroids own production of T3 you have, in effect, been down regulated by some 20% of your overall well being and this in itself will pull you down even further.
Your doctor is not able to prescribe anything other than T4 - Levothyroxine and you need a referral to endocrinology and depending on where you live this may or may not be an option as it has become a postcode lottery.
Thyroid UK hold a list of sympathetic specialists and endocrinologists both NHS and private and it might be wise to ask for a referral to someone who is likely to help you.
Thank you, I’m going to try my best to get a referral tomorrow when I speak to the GP, she’s quite hostile though and think it will be a struggle. She gets really angry when I get private tests so imagine that will wind her up too. 🙄
if you go into - analyseopenprescribing or openprescrbing analyse - you can see by surgeries if yours is actively prescribing T3 and then you may have reason to question your medication.
Where I live I was told that the CCG were refusing any new prescriptions of T3 and those patients already on Liothyronine were actively being asked to reduce / switch to T4 :
I was too ill to keep fighting the system and purchased both T3 and NDT for myself and have stayed away ever since as all my issues were those of hypothyroidism and RAI for which the NHS denied responsibility and refused to prescribe anything other than T4 which didn't suit me long term as I was getting more and more ill and looking back I trusted my doctor knew best only to learn, mostly from this amazing forum, and a few books that I wasn't the one going mad.
Folate - normal range 2.9 - 14.5 - my result = 7.9
B12 - normal range 25.1 - 165 - my result = 135
Vit.D - normal range 50 - 200 - my result = 61
Ferritin is still too low
Suggest you read as many posts and replies by humanbean on iron and ferritin as possible
Look at increasing iron rich foods in diet, foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance
Thorne Basic B is a good quality option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
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
Work on improving low vitamin levels and trialing strictly gluten free diet
Retest thyroid levels, in 2-3 months. Testing early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Always get same brand levothyroxine at each prescription
Can I ask when you take your iron supplements? I was taking some and felt better but then got told by somebody that iron stops levothyroxine absorbing so I got in a panic about taking it and stopped.
I currently take selenium, magnesium, b complex (not sure if it has folate but will check) vit D (will swap to the spray now) beta carotene… I think that’s it’s.
I was also moved on to a very high dose of sertraline rather than citalopram and am really angry as found something yesterday in the NICE guidelines saying that sertraline can hinder levothyroxine absorption. I’m also on amitriptaline and I’m sure it said something about that not being ideal either.
When ever I got my test results back from the GP the note used to say results indicate patient is not taking medication consistently -but I was, so I argued I wasn’t absorbing it and was told that wasn’t the case. That was when my Doctor lost her temper and I ended up crying saying “I know something is wrong with me”
Not looking forward to my appointment this morning 😪
Ah that might be where I’m going wrong then! I take my Levo as soon as I wake and then wait an hour before ingesting anything but also take my sertraline and an hour after my levo.
I’m starting to think it might be better to take my levo before going to bed. Would that be okay as long as I don’t eat anything an hour before or would it need to be a longer break?
Iron has to be taken at least 4 hours from thyroid meds …. As a rule for me I take all supplements 4 hours away from my thyroid meds and antidepressants can cause “fake” hyper symptoms this could explain your low TSH … I had this happen to me with cymbalta but don’t expect your doctor to know this.
Luckily I’m relocating soon to a completely new area so am hoping my new GP will be more helpful. I know it sounds negative but I’m not holding out much hope though to be honest.
Without a thyroid gland I felt just the same for 8 years. then discovered NDT and would NEVER go back to levo, with or without liothyronine. The longer you give it on levo monotherapy when it is unsuitable, the more ill you become and the less likely it will be to regain proper health again once on T3/T4 combo or NDT. You also risk other problems such as carpal tunnel syndrome, perhaps even some form of cancer. I had kidney cancer whilst on levo only, other types of cancer are possible of course.
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