Looking for some assistance on test results. Further info and history is included after results.
Test carried out at 9.30am, no food or drink except water & 34 hrs after last Levothyroxine dose.
TSH 9.67 (0.27 - 4.2)
FREE T3 4.9 (3.1 - 6.8)
FREE THYROXINE 19.6 (12-22)
THYROGLOBULIN ANTIBODIES: 10.7 (0-15)
THYROID PEROXIDASE ANTIBODIES: less than 9 (0-34)
FERRITIN: 15 (13 -150)
FOLATE SERUM: 2.7 (more than 2.9)
Vitamin B12: 36 (25.1 -165)
Vitamin D: 31 (50-200)
I was diagnosed with Graves disease 2014. After treatment with carbimazole, i relapsed and had RAI Nov 2015. Diagnosed underactive in July 2016 and was up and down in dose of Levothyroxine until settled on 62.5 since Oct 2019. Prev dose of 75 for 6mths resulted in overactive symptoms of palpitations, hot flushes etc. My weight is steady at approx 52kg.
I've been feeling exhausted with headache and poor concentration over the last month or so & doc arranged blood tests. In the meantime I also ordered private testing & the results are those above.
I had blood tests with my doctor yest & had call today to advise to increase Levo to 75 in 1st instance before retesting. We discussed prev overactive symptoms on 75.
I have appt with doc tomorrow to examine my thyroid gland as neck feels 'bulky'and uncomfortable. I did have scan on diagnosis and had multinodular goiter. No other testing based on scan.
I briefly discussed the low results on all non thyroid tests done privately and he will retest these tomorrow so they have on my records and discuss supplements.
He advised FBC done yest was normal except for 'platelets a little high'.
Looking for advice re the Thyroid results and suggested increase. From what I can understand this seems reasonable?
Also any further advice on the low vitamin results and what I should discuss tomorrow re this?
Many thanks for your help
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Thydy
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Thydy I also was overactive had RAI and became hypo . When I started on levo I had many old symptoms return - increased heart rate with an odd beat, I lost weight, had nausea, anxiety. The endo was happy to keep me on a low dose of levo because my TSH was just in range at 4.15 and my ft4 was at the bottom of the range. She knew nothing about symptoms otherwise she might have explained to me that the symptoms of overmedicated and undermedicated hypo are very similar. I was so convinced that I was overmedicated that I reduced my levo to 25mcg daily. I became very ill.I now know that the only way to tell what my symptoms mean is by looking at blood results.
You could do with that increase. I have always taken my levo in 2 doses so splitting it into a 50 and then a 25 MCG might help.
Your vitamins are very low and need to be supplemented. As a rough guide I go be a min level of 50% through the range .
Hi, thanks very much for your response. I had not considered that my 'overactive' symptoms could have been undermedicated hypo. The doc at the time said to reduce based on my symptoms as I would know best how I felt!
No wonder you felt so ill on such a small dose!
Do you split the dose morning/evening or morning/ afternoon?
Yes I was shocked at how low the vitamin levels are but they at least explain how tired I've been feeling. I will monitor these to increase to at least 50% min as you suggest.
Thanks again for your reply. It's much appreciated. I'm glad you are now well! Hopefully the dose increase and splitting as you suggest and supplements will sort me out too.
I have taken it morning and bedtime. I have taken it morning and afternoon. I have split it in 3 morning, afternoon and bedtime. It is whatever suits your day and away from food.I ended up on 2 X 50mcg levo and was ok but not great. I am now on a combo of levo and liothyronine which has helped greatly.
It is easier if you can feel well on levo only so work on vitamins and increasing your dose for now.
Hi SlowDragon and SeasideSusy,Following all your excellent advice last week, I wrote to doctor and delivered the letter to the surgery on Thursday. I have had no response to my letter, but if I'm hyper, I don't suppose I am in the range to get treatment. I'll just wait and see. Perhaps I'll get a blood test form in the post and can then book myself in. I remember being low in zinc about forty years ago - that's the only thing I can think of.
Suggest you get FULL thyroid and vitamin testing done privately Looking at previous posts, you have fibromyalgia - frequently undiagnosed hypothyroidism
Yes, in my letter to my GP I have requested "To be safe, I should like you to arrange further thyroid tests for: TSH, FT3, FT4, both thyroid antibodies and the associated facto TSH; folate; ferritin; Thyroid Peroxidase (TPO); Thyroglobulin (Tg or Tgab); Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb). That's without discussing pituitary and cortisol/adrenals – perhaps they will show up on these tests.
I will not be taking any more Levo. After one little dose, I was feeling very "wired" and concerned about a very "dodgy" diagnosis that is based on nothing more than a low TSH level, without discussion of symptoms."
I am hoping this covers everything without duplications! I think my thyroid was checked when my FM diagnosis was made. I'm taking loads of vitamins including D3 (Evacal) - also alendronic acid, as I have four compression fractures. (That's beginning to be a problem as my teeth are getting sensitive). I have two missed callstoday from the surgery and a message to book my booster jab (Oh how I wish that wasn't so complicated!) I've read today about people going to Blue Horizon Thyroid blood tests. I will just wait and see. Busy day today and didn't hear my mobile. Dreadfully tired. Thanks, SlowDragon for looking after me like a guardian angel xx
I have been in touch with BlueHorizon about the vacutainer blood test. If I go ahead and get this, I'm hoping my phlebotomy department where I do my regular blood tests will be able to do it for me. Assuming I do this, when I get the results, what next? It's not like being referred for a blood test and then whoever gets the results takes it from there, as it would all be my own doing.
Also any further advice on the low vitamin results and what I should discuss tomorrow re this?
FERRITIN: 15 (13 -150)
This is iron deficiency according to NICE who say that Ferritin below 30ug/L confirms iron deficiency. Your GP should do an iron panel to confirm deficiency and a full blood count to see if you have anaemia. You can have iron deficiency with or without anaemia.
FOLATE SERUM: 2.7 (more than 2.9)
This is Folate deficiency according to NICE who say below 3ug/L is deficiency. GP should prescribe folic acid.
Vitamin B12: 36 (25.1 -165)
Active B12 below 70 suggests testing for B12 deficiency. Check for signs and symptoms of B12 deficiency here:
List any that you have. GPs are supposed to be guided by symptoms not numbers. I expect you may need B12 injections. Don't start folic acid before further testing of B12 as that would mask signs of B12 deficiency.
Vitamin D: 31 (50-200)
In some areas Vit D deficiency is diagnosed <30, in some areas it is <25. Whichever applies to your area you are so lose to deficiency that you should be treated with Vit D deficiency protocol which is loading doses totalling 300,000iu over 6 weeks.
Please come back and tell us what GP says and prescribes for further comment.
34 hrs after last Levothyroxine dose.
Is that a typo, do you mean 24 hours?
Your results are very unusual to have such a high TSH with such a high FT4 that it makes one wonder of there has been assay interference. Do you take a B Complex or Biotin supplement?
Thanks for your replies. I was shocked with the poor vitamin results. I've noted your comments re what other tests to ask to be done and supplements needed and will discuss with gp.
Re the b12 symptoms I have:
Occasional Mild tinnitus symptoms
Do have blurred vision for short period on waking but attributed this to my eyes adjusting!
Forgetfulness
Fatigue
Pale pallor
Occasional palpitations (maybe once or twice daily)
Reduced appetite
Was diagnosed with IBS many years ago and but symptoms only very occasionally now
My mistake, yes testing was 24 hrs after last levo dose!
Re high tsh with high ft4 being unusual, what is assay interference? I do not take any b complex or biotin or any supplements at all. Levothyroxine is my only medication currently.
I was diagnosed with anaemia in 2015 and had low ferritin of 7 then. I was on iron supplements for around a year as gp believed I wasn't retaining iron. But they told me to stop iron as no longer anaemic and didn't want to keep me on it if I didn't need it! My last ferritin test I can see was April 2018 and it was 8 then! But if I recall the gp said as my fbc was normal I wasn't anaemic and didn't need iron. I did take Feroglobon myself for a period afterwards s felt better on it but stopped this around 6-12 mths ago.
My gp retested for vitD at the surgery. He has prescribed vitD supplements in the meantime but only 800 once a day! I can see from your and other members advice, as we'll as looking at the guidelines, this is not sufficient for my level. He did say loading doses can be prescribed but he would just prescribe 800. I don't know why. It all felt a bit rushed at the appt as he was struggling to get blood from me. I will call next week and query this, with a view to me taking a higher dose myself. Even not following the deficiency protocol it looks like I should be on at least 1600 for 6mths or 3-4000 for 3 mths?
For ferritin he has prescribed 210mg once daily. Not sure this is sufficient either. I have been on 3 daily I think in the past. I asked about iron panel test for anaemia but not sure that he done this. I did have FBC done last week and presume this showed I didn't have anaemia as he said everything normal on that except platelets a little high.
For folate 5mg folic acid once daily prescribed.
He brushed me off re testing further for pernicious anaemia saying they wouldn't test further as my result was in range. I didn't get the chance to discuss symptoms of B12 deficiency! I will bring this up again next week.
I will concentrate on dietary changes to optimise all the vitamin groups as on further reading I recognise my diet is lacking and can definitely make changes there.
I have started increased dose of levo at 75.
I will ask for copies of my test results for thyroid and FBC to see what they have.
Although your level is dire, as far as the NHS is concerned it's not deficiency as it's not below the level where this is diagnosed. However, it's so close that one has to wonder why GPs wont use the deficiency protocol. Never mind, you don't need your GP's permission to buy your own Vit D supplement and I would follow the treatment protocol yourself.
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
My suggestion would be to take 5,000iu D3 daily and retest in 3 months. Once you have reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
1 x Ferrous Fumarate daily doesn't seem enough for your low level. However, if this is all he is giving you then make sure that you are regularly monitored every couple of months whilst supplementing.
An iron panel will confirm iron deficiency, not anaemia. It's the full blood count that shows anaemia.
B12
With such a low level and symptoms, don't accept that he wont test for B12 deficiency and pernicious anaemia. He must listen to your symptoms and these should take precedence over numbers. You may be able to get help with how to go forward with this from the Pernicious Anaemia forum here on HealthUnlocked:
was diagnosed with Graves disease 2014. After treatment with carbimazole, i relapsed and had RAI Nov 2015. Diagnosed underactive in July 2016
I was diagnosed with anaemia in 2015 and had low ferritin of 7 then. I was on iron supplements for around a year as gp believed I wasn't retaining iron
Low ferritin is EXTREMELY common when hypothyroid
The fact you had such terrible ferritin immediately after RAI suggests you went hypo very quickly
Looking to improve ferritin to at least half way through range
Hi SlowDragaon. I suspect I maybe had low ferritin even before the RAI and it maybe just zapped it further after RAI! I recall often being told I was borderline anaemic when tested from quite young. I'm not vegan or vegetarian but recognise my diet could be a lot better for optimising all nutrients and vitamins. I willdefintly make change going forward to improve diet. Thank you.
With those results I would want them verified with a venous blood test. There's no way your TSH should be that high compared to your FT3 and FT4 unless you have a pituitary problem!
Hi thank you for your reply. I had a venous blood test at the gp last week so will request details of this . From other replies it seems this may not be unusual after RAI and TSH is no longer a reliable measure.
If I get the results from GP tests I will be able to see if these results are similar.
I'm just replying in regards to vitamins.I'm hypothyroid and suffer with all the vitamin deficiencies too. I am on protocols for
vit D (with all co factors which are magnesium, K2mk7, omega 3 DHA, boron and vitamin A these all work together as a team) without magnesium and k2 the vitamin D will not go to where it should and calcium can get placed in the wrong places., like veins and cause clogged arteries, kidneys and form stones instead of going into your bones.
Iron (with vit c) and
B12 (which includes b complex and follate)
I am not medically trained but i have safely raised my levels with these protocols, I did alot of research first. I also used online protocol groups on social media platforms, bought books and read medical studies.
I felt dreadful with low Ferratin, I hope this helps and you can get sorted soon.
Thank you. Yes I have been feeling quite dreadful for a while and these results go some way to explain why. It is quite complicated and overwhelming to try to understand about the vitamins and levels. And gp does not appear to really take seriously enough or provide any guidance, where that is concerned. I can see from previous posts this is not uncommon. I will do the research as you suggest to better inform myself so I can make sure I get back on track. Thanks for your advice. I am glad you have managed to raise your levels and hopefully you are feeling a lot better now.
It was very overwhelming to start, I began by focusing on my vitamin D, its the most complex of the protocols as it it has several different vitamibs involved. I did three months on that, then introduced the iron protocol and b12 protocol.
I will add I was not on thyroid meds at this time. I had hypothyroid symptoms and noticed my bloods were not optimal but as you say doc's don't really do alot based on symptoms and slighty off bloods, they seem to wait until your bloods show your really super sick.
I stopped all my supliments during july as was having loads of blood tests, endoscopy, ultrasounds ect and they dropped ferratin from 133 to 73 and vit D from 120 to 70.
Went back on the protocols in August.
So goes to show how fast vitamin levels drop with untreated hypothyroid.. I'm now on NDT (my second week). Hopefully the vitamins will start to stick once on the right does of NDT.
Good luck on your journey and if you need any help finding the protocols send me a message and I can tell you the sights to visit to help with your research
Many thanks. Gosh that is a significant drop for vitamins in such a short period and illustrates how these are related to thyroid. I hope you start seeing more consistent improvements soon. Seaside susie has given me some advice for vitD, K2 & magnesium so will follow that & see how this improves. I have been prescribed 1 iron tab a day for now, which seems too little but will monitor this and research further. Many thanks for your help and offer to contact you for further advice.
You need to take the iron tablet with vit C as we need vit C for adsorbtion of iron, ideally 1000mg of vit C but build it up slowly as it can cause loose stools.Good luck
Hi thydy,Some really good advice from people on here.
My husband had similar blood results to yourself, high TSH with T3 and T4 also on higher side about 18 months ago. My advice would be to make sure you get blood test 6 weeks after dose change, to make sure bloods are going in right direction. Obviously important how you feel too but he found it hard differentiating between hypo/hyper at the time.
Thank you very much for your advice. Its reassuring to hear about similar experiences. Its really quite complex and overwhelming. I will check further when I should be retested as don't think gp advised me on that. Or I missed this ! Thanks again.
I too have Graves and had RAI thyroid ablation back in 2005.
RAI is a slow burn, disabling your thyroid slowly and it can be difficult differentiating between hyper and hypo symptoms, as some symptoms can be experienced in both these health issues - there is a full list of both health conditions on the Thyroid UK website, who are the charity who support this amazing forum.
RAI is known to trash vitamins and minerals.
But we need optimal vitamins and minerals to be able to convert the storage hormone T4 - Levothyroxine into the active hormone T3 that your body uses as its fuel.
It is imperative that you are dosed and monitored on your T3 and T4 blood test levels and not your TSH.
Your feedback loop is now broken, as you haven't a " thyroid " and your HPT axis - the Hypothalamus-Pituitary-Thyroid feedback loop isn't an accurate measure of anything.
Sadly, in primary care the TSH is generally the only blood test undertaken irrespective of whether you have a thyroid or not.
We generally feel at our best when our T4 is in the top quadrant of the range as this in turn should give you a higher T3 .
Currently your T4 is coming in at around 76% with your T3 coming in at around 50% .
With optimal vitamins and minerals you may well see your conversion improve and your T3 move up to around 60% and to around the mid 5's and, hopefully, your symptoms relieved.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100mcg.
Some people can get by one T4 - synthetic Levothyroxine only, some people find at some point in time the T4 doesn't seem as potent and need the addition of a small amount of T3 - synthetic Liothyronine and some people find they do best of Natural Desiccated Thyroid.
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.
You may like to read further around Graves Disease as it does appear to be a poorly understood and badly treated autoimmune disease and I found the Elaine Moore Graves Disease Foundation the most well rounded of all the website I visited. Elaine has Graves and went through RAI back around the end of the last century and finding no help nor understanding with her continued symptoms, and dealing already in the medical " world " started researching and writing on all aspects of Graves and AI thyroid diseases.
Hi, thank you for your reply pennyannie. I really appreciate your explanation about the effects of RAI on vitamins and why TSH is not accurate, especially after this treatment.
Hopefully optimising vitamins and minerals should improve T3 conversion. I have also started on the small increase to 75 levothyroxine. Hopefully, this doesn't have a detrimental effect along with the vitamin supplements? Its so hard to know what's best ! But I can check the direction of TSH, T4 & T3 in 6-8 weeks.
It's certainly not as straightforward as the endocrinologist sells it to you! What I am learning fast is that we need to take charge ourselves and become as informed as possible to be able to monitor our symptoms and levels,as sadly can't rely on GPs knowledge.
I will have good look at Elaine Moore's website as you suggest.
Thank you again for your advice. Much appreciated.
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