I’m hypothyroid following Graves’ disease then radio iodine about 20 years ago. Was stable on 125 levo until I got Covid and have had long covid - debilitating fatigue - for a year now. I thought it was thyroid related. Following advice on this forum - thank you - I got blood tests and results are below.
I’d appreciate any advice . Thank you.
Vit D L 44 50 - 200
Magnesium 0.9 (0.7 - 1)
Crp 3.26 (<5)
Ferritin 4 (13 - 150)
Serum folate L 6.53 (8.83 - 60.8)
Active B12 L 22 (37.5 - 150)
TSH. 1.28. (0.27 - 4.20)
Free T4. 16.6. (12 - 22)
Free T3. 4. (3.1 - 6.8)
T4 total. 121.0. (60 - 181)
Anti thyroglobulin abs. 16. (<115)
Anti thyroid peroxidase abs. 11.2. (<34)
Cortisol (random). 474.0 (78 - 507)
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Nikki96
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Crikey I'm not surprised you feel fatigued... have you presented these results to your GP as they need to treat the low B12, folate, Vit D and ferritin it all looks pretty anaemic to me ( but I've no great knowledge in this area)
B12 so low your GP MUST test for Pernicious Anaemia before starting B12 injections
As you have B12 injections it’s recommended also to supplement 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 and will help improve B12 levels too
if your GP doesn’t start B12 injections (unlikely) ……With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
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) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 deficiency is treated can lead to severe neurological problems.
Eating iron rich 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.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Thank you very much. It’s reassuring to know this and I’ll go back to GP with results. Blood test was taken early in morning and levo was last taken 24 hours before. I was on Eltroxin but now get levo from Mercury Pharma. I appreciate all the advice and support .
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thank you SlowDragon I so appreciate this. Will read all and talk to my GP on his return on Tuesday. I thought it was all long Covid, but clearly not. Then I thought it was thyroid. I am a healthy eater but not keen on red meat. Will take time to read and digest all this. Looking forward to feeling better .. at least there is a way ahead. Kind wishes
No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels -
so, restoring ferritin, folate, B12 and vitamin D to optimal levels as already advised, your first step.
Ferritin takes time to build - I spent over a year building back my core strength - ( I'm also Graves - post RAI thyroid ablation 2005 ) though you may find with a ferritin that low an iron infusion is suggested.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH - as commonly happens in primary care -
and we generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around a 1/4 ratio T3/T4 -
as in theory, the higher the T4 - the higher the T3 - and we need the T3 as high as possible - within its range - as T3 is the active hormone which runs the body and not T4.
T4 is a pro-hormone and pretty much inactive in the body until it is converted into T3 - which runs the body - with the heart and brain - having the 1st claim on Free T3 to keep you alive -
and with the thyroid responsible for full body synchronisation from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
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 -
Without a thyroid you have ' lost ' your own natural production of T3 - and many find that they need a small dose of T3 in addition to probably a slightly lower dose of T4 to restore thyroidal balance of these 2 vital hormones.
I see from your bio that you mention Liothyronine - did you find this T3 treatment option helped to restore your health ?
Are you still taking the anti-depressant - Citalopram ?
We do now have some research regarding Graves you may find of interest :-
The most well rounded of all I researched some years post RAI thyroid ablation is that of Elaine Moore - books and website - elaine-moore.com
P.S. Funnily ( or not ) I was doing ok on 125 mcg T4 - but at age 65 - it was deemed my TSH was too low and my dose cut to 100 mcg T4 - and everything started to go pear shaped for me - details on my profile if interested.
Thanks so much for this. My own gp is back on Tuesday and will talk to him. I’ll take into account all the info here … the doctor in surgery today thought results were nothing to worry about but offered a full review face to face and tests? I’ll speak to my own GP on Tuesday. I need tests for pernicious anaemia and possibly coeliac disease. I still take the citalopram … not sure I really need it. If I can optimise my vitamins etc it would be great. I didn’t get liothyrine I was just desperate to get my energy back and wondered if it might work? I’ll have a good read, digest all this info and move forward. I was planning to see an endocrinologist privately but think I’ll work on my overall vitamins etc then see how things are. So appreciate all the help.
Ok then - there is a lot to take in and understand -
It's a bit like a house of cards - as just removing one card sees the whole house fall down -
without a thyroid - and on T4 monotherapy your body is under the additional stress of having to make up for the fact that you have ' lost and not replaced ' your own natural production of T3 to kick start your metabolism -
Some believe ( Professor A Toft ) that we can run with a slightly higher over range level of T4 if this achieves the desired effect of achieving a higher level of T3 which relieves the symptoms of hypothyroidism being tolerated -
but more recent research suggests running long term with a high /over range T4 carries a risk of cancer :
A reduced metabolism means that you will struggle to extract key nutrients from your food no matter how well and clean you eat -
and even when optimally medicated irrespective of whatever thyroid hormone replacement you choose to use you may well find you need to supplement to maintain your core strength vitamins and minerals.
I read when researching for myself that ferritin needed to be at least over 70 for any thyroid hormone replacement to work well:
Non optimal levels of core strength vitamins and minerals will compromise your T4 to T3 conversion and conversion can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing -
so goal posts can change, especially as we age, and it can become something of a vicious circle.
P.S. Thyroid UK - the charity who support this patient to patient open forum hold a list of recommended thyroid specialists and endocrinologists - both NHS and Private - so maybe contact admin @ thyroiduk.org - and ask that the list be emailed to you -
i think there is also now a formal request form for the recommended list of specialists which is held within the Thyroid Uk website
When on Levo and hypothyroid/low Ft3 we develop LOW stomach acid. This results in poor nutrient absorption regardless of how good your diet is
Also many Hashimoto’s and Graves’ disease patients find they benefit from strictly gluten free diet
Poor gut function 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 and may slowly lower TPO antibodies
with absolutely dire vitamin levels good reason to request coeliac blood test
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
I think you might be in the running to get a prize for the worst nutrient results ever reported on the forum. You will feel so much better once your levels improve. I don't know how you can function.
You will probably find once you've optimised all your nutrients that you have to take a maintenance dose of each nutrient for a few years or for life to stop them dropping into your boots again.
When you want to start buying supplements (if your doctor tells you to buy your own, as some of them do) please ask on the forum for advice about what to buy before spending a single penny because some of them are made of cheap, nasty ingredients that are poorly absorbed.
What we usually suggest if buying tablets or capsules :
Vitamin B12 : Methylcobalamin. Avoid cyanocobalamin. But you need injections and might not have a choice in what it contains.
Folate : Methylfolate. Avoid Folic Acid.
Vitamin D : Always take D3. Avoid D2. The best form are small capsules that contain oil and D3 and nothing else.
Ferritin : Note that Ferritin is a measure of your iron stores, and yours are empty. So to improve ferritin you need iron. This can be given in various ways.
Injection : The best treatment for you if you can persuade your doctor to refer you, since you have so much ground to make up.
Tablets/Capsules : Doctors prescribe "iron salts" e.g. ferrous fumarate or ferrous gluconate (avoid ferrous sulfate completely, they are rough as can be but doctors like them because they are really cheap) and many of us struggle to tolerate them. Some people do tolerate one of the iron salts and can raise their iron with them. You can try various kinds to see what suits you best but another better possibility is heme/haem iron. Search the forum for info on "Three Arrows" supplements. A lot of people find that they raise their ferritin a lot faster with heme/haem than iron salts, but some people don't find their ferritin rising - so, experiment.
Whatever your doctor prescribes, let us know what it is and what the dose is. They often prescribe pathetic doses of vitamin D, sky high doses of folic acid when methylfolate is much better and sky high doses are not recommended anyway. If they prescribe B12 in tablet form the dose is usually pathetically small, and as I've already said, they prescribe ferrous sulfate a lot despite very poor tolerance being a major issue with it.
I’m laughing as I sent in my results and was told by receptionist that he had talked to doctor and iron was fine? My own gp will be in Tuesday and shall talk to him and go through my results with him. His is very helpful.
My ferritin had been at 7 when I joined this forum. GPs are terrible on iron issues! I felt so dreadful I paid for an iron infusion privately while I waited for an nhs appt. I experienced a noticeable uplift! Lung capacity, mood and even my hearing improved. By the time I saw an nhs haemotology Dr, it was down again and since then I have an nhs infusion if it gets to 30. Mine is iron deficiency anaemia. I’ve had two good years since my last infusion maintaining and it’s lowering again, no idea why. Push your GP to refer you to haemotology. Good luck!
Good to read - as where you thought you were - was very concerning to many forum members - and I couldn't understand how you could even hold a conversation on this forum !!
Ferritin still needs building up as you need to be at least over 70 and probably more like around 100:
You are in the NHS range so not seen as needing a NHS prescription - mind you the ferrous fumarate i was prescribed ( my ferritin was down at 22 ) was so awful on my stomach I ended up buying my own - Gentle Iron -
but any iron bisglycinate supplement will be kinder on your stomach -
being in a NHS range for anything is only the first step to finding where you may feel better -
as it is more about where in the range you need your levels to be - to be at your best
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