Feeling fatigued/tired/lethargic - Vitamin D results

[LonelyPlace]

Hi

I have Graves since 2016 with severe symptoms and high TRAb. 3rd episode on Block & Replace this time for about 16 months - before that just been on Carbimazole.

Posted before that feel more fatigued/lacking energy/tired so bit ago went to GP and they did blood tests for Haematinics (Ferritin, Folate, B12), HBA1C, full blood count and liver/kidney function which all came back in normal range. I asked at the time for vitamin D blood test but GP said they won't test vitamin D and NHS recommends everybody takes 10 mcg (400iu) during autumn/winter.

I can't work now due to health conditions (Graves and others) and so can't afford lots of private tests but because I sometimes get tingling in feet and read this can be low vit D, I did have the £31 Vitamin D finger prick test via the NHS Black Country service recommended on here many thanks to Slowdragon. It came back as "sufficient" but was quite low in range at 55.65 nmol/L (says 50.1 - 220 is sufficient range) but wondered if this could still cause these symptoms. The blood was also taken in summer time (August) when I am outside more and in the garden/walk more etc. but would likely have been much lower in other seasons as I don't take any vit D currently but am planning to now get some to take in autumn/winter (some mouth spray from H&B was recc by Slowdragon before).

I don't plan to take overly large amounts though as I am aware of toxicity as my mother in law was taking quite high dose not long ago (multivitamin liquid and some extra vit D tablets) and caused her body rash which disappeared after she stopped taking but then reappeared when she started it again so was definitely that and also read other reports about it but think I would need it in winter and even now just after summertime looks like I could do with top up/maintenance dose as it does look at low end even though NHS says it was at low end of sufficient in August.

Does anybody know if this Vit D level of 55 could still cause symptoms (like fatigue/tiredness/lack energy/tingling feet) as otherwise don't know what it is. BTW my thyroid T3/T4 are in range now I am stabilised on B&R but my TSH has remained very low at every 3 monthly blood test although not suppressed. Would this cause any symptoms or could it be due to the Levo as this last 16 months is first time I have been on it and feel worse with these symptoms although as endo says my Graves is more stable which is a major consideration as I go overactive very suddenly/quickly with severe symptoms of heart racing off the scale, breathlessness and sharp chest pains which is totally terrifying/maybe life threatening and feels like it - usually end up in ambulance to A&E.

Just as background info - my current endo I asked to change to has asked me to maybe "consider" treatment of RAI or surgery as unlikely to get remission but says it's my choice (unlike previous ones who tried to force me into RAI so is why I dispensed with them) but have read about these options and sometimes problems with Levo and lack of other options with NHS - and not sure if my current symptoms could be due to it - I don't fancy going down that route with no way back - so I stay stuck in "no mans land" - not well but feeling I could be even worse as even my endo acknowledged that from their data - people who have RAI have a lower quality of life afterwards. So makes me wonder why does he ask me to consider it as an option - he doesn't say but maybe because it's better than possible death with severe Graves?? Not sure.

Any thoughts appreciated. 🙂

Thanks LonelyPlace

[SlowDragon Administrator]

they did blood tests for Haematinics (Ferritin, Folate, B12), HBA1C, full blood count and liver/kidney function which all came back in normal range.

Can you add actual results

Low B12/folate can cause tingling feet

What vitamin supplements are you taking

Vitamin D

low in range at 55.65 nmol/L (says 50.1 - 220 is sufficient range)

Yes vitamin D is too low

How much vitamin D have you been taking daily before you tested

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

ideally test twice yearly when supplementing

vitamindtest.org.uk

Certainly retest after 4-6 months to see if level has improved

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

You may need higher dose in winter than summer

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[LonelyPlace in reply to SlowDragon]

Hi Slowdragon

Yes I will try to get actual results - GP's just told me they were all in normal range.

As I mentioned I am not currently taking any vitamin D (or any other supplements) as wanted to have the tests first as a baseline to work from. NHS only recc taking 10 mcg (400IU) Vit D per day in winter/autumn unless you don't go outside much eg. very elderly or are covered up but will this amount be enough to maintain my levels normal if only take 6 months or so of year? Not sure if enough especially as my result was quite low and test was in latter part of August when had summer outside in garden & walking so should have been higher I thought although hear what you say about trial & error - guess will just have to test now and then to get a handle. Also obviously will now drop lower in the winter months. Just wondered if my symptoms could be caused by this or not likely? GP's don't seem to give a fig whether you are low/high or whatever - don't seem bothered - asked a few and won't test even if ill.

Many thanks for the other info and articles to read - I will look at those. 🙂

LonelyPlace

[SlowDragon Administrator in reply to LonelyPlace]

Very unlikely 400iu is high enough dose vitamin D

Perhaps try 2000iu daily mouth spray

Retest in 4 months

You may need higher dose

[SlowDragon Administrator in reply to LonelyPlace]

Yes I will try to get actual results - GP's just told me they were all in normal range.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Results in Normal range is not necessarily at GOOD level

For example

B12 range is typically 180-680

GP would say B12 is “normal “ if result was 185

Aim to maintain B12 at least over 500

Ferritin similarly range is 30-150

Aiming for ferritin at least over 70

But we frequently see GP saying Ferritin is “normal” when well below 30

[LonelyPlace in reply to SlowDragon]

Hi

Thanks for all that info SlowDragon.

Have now got my online results via GP.

My ferritin is high then by your range as mine is given as 164 ug/L with no ref range given but just says "normal" unless this is measured in different units?? Would be surprised if high as I don't eat any red meat - only bit of chicken/fish but sometimes this not even every week.

B12 is 306 pmol/L (115-1000) so NHS say is "normal" but maybe on low side by what you have said but again I eat no red meat (and not lots of other meat either) and take no supplement for this so maybe can understand that.

Folate is 4.4 ug/L - NHS say "normal" and just states that <3ug/L suggest deficiency but Pennyannie has just told me that folate should be around 20 (optimally) so would seem very low? I am not sure but heard folate is more important for females than males (during pregnancy etc.) and I am male so is this as important for me to have optimal levels? I am not sure what folate does TBH, and if optimal levels are as necessary for males and as you did not mention it above - maybe assumed you are aware I'm male and not as important for me so that's why?

I have got my other non-vitamin related results such as full blood count, liver/kidney function also - some of which look quite low in ranges and lots of different tests for each but NHS say is normal so not sure what is causing my symptoms unless it is that some of the vitamin values are too low in range or that it is just my Graves disease in general or the medications I am taking for it (100mcg Levo/40mg Carbimazole).

Thanks again

LonelyPlace

[SlowDragon Administrator in reply to LonelyPlace]

maybe assumed you are aware I'm male and not as important for me so that's why?

We tend to assume female unless profile says otherwise

How old are you

Ferritin is higher in males

Ferritin higher with raised CRP (test for inflammation)

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

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.

[LonelyPlace in reply to SlowDragon]

Yes I'm male and in fifties so my ferritin is 164 ug/L so would be in top range of 30 to 518 so I assume that's normal then (even though don't eat much meat or take supplements) which is good to know.

Many thanks SlowDragon,

LonelyPlace

[SlowDragon Administrator in reply to LonelyPlace]

B12 is 306 pmol/L (115-1000) so NHS say is "normal" but maybe on low side by what you have said but again I eat no red meat (and not lots of other meat either) and take no supplement for this so maybe can understand that.

Folate is 4.4 ug/L - NHS say "normal" and just states that <3ug/L suggest deficiency

Improving these low levels by taking supplements is likely to help reduce symptoms

Low B12

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

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

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

Post discussing different B complex

healthunlocked.com/thyroidu...

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[SlowDragon Administrator in reply to LonelyPlace]

I have got my other non-vitamin related results such as full blood count, liver/kidney function also - some of which look quite low in ranges

Can you add results?

100mcg levothyroxine may be too low a dose Levo, especially as you are a bloke

Dose levothyroxine is adjusted according to your body weight

[LonelyPlace in reply to SlowDragon]

Hi Slow Dragon

All my other results you asked me to add are:

HAEMOGLOBIN A1c LEVEL (HBA1C) - result given as NORMAL

IFCC standardised 37mmol/mol (no ref range given)

FULL BLOOD COUNT - result given as NORMAL

haemoglobin concentration 158g/L (135-175)

total white blood count 5.3 10*9/L (4-11)

platelet count - observation 269 10*9/L (150-400)

red blood cell count 5.09 10*12/L (4.5-5.9)

haematocrit 0.463 ratio (0.41-0.53)

mean cell volume 91.0 fL (80-100)

mean cell haemoglobin level 31.0 pg (26-34)

red blood cell distribution width 12.4 % (11.5-16.5)

neutrophil count 2.84 10*9/L (2-7.7)

lymphocyte count 1.87 10*9/L (0.8-3.4)

monocyte count - observation 0.45 10*9/L (0.2-0.8)

eosinophil count - observation 0.14 10*9/L (0.04-0.4)

basophil count 0.04 10*9/L (0.01-0.1)

LIVER FUNCTION - result given as NORMAL

serum bilirubin level 18 umol/L (<21)

serum alkaline phosphatase level 103 iu/L (30-125)

serum alanine aminotransferase level 14 iu/L (5-45)

serum total protein level 73 g/L (65-82)

serum albumin level 37 g/L (36-48)

KIDNEY FUNCTION (Urea and electrolytes) - result given as "SATISFACTORY"

serum sodium level 140 mmol/L (135-144)

serum potassium level 4.4 mmol/L (3.5-5.3)

serum chloride level 104 mmol/L (96-109)

serum bicarbonate level 26 mmol/L (24-32)

serum urea level 4.2 mmol/L (3-7.6)

serum creatinine level 95 umol/L (65-114)

This result was only stated as "satisfactory" and not "normal" as for the others. Not sure if this categorisation means it is a worse result or just how it is stated for this test?

THYROID BLOOD TESTS

You mentioned my Levo dose 100mcg may be too low but are you aware I have been on block & replace (40mg Carbimazole/100mcg Levo) since June 2023 for Graves disease and not just taking Levo for hypothyroidism?

I am allowed blood tests 3 monthly now at the endo clinic (hospital) rather than 6 monthly at my GP's (as GP messed them up and not monitoring properly and went hypo when was just on Carbimazole last year).

My last thyroid bloods the Levo dose was not 24 hours before (probably around 10 hours before) - my last dose of levo would have been around midnight ish the night before as I normally take it at least 4 hours away from other medications/food.

No I can't get the same brand of Levo - I have had many different ones since June last year when started on B&R - got ARISTO currently but doesn't seem any different to me with any of them - just the same and blood results similar. I have asked different chemists if they can just get me the same brand but they all say no depends what they can get as often production/supply problems and if GP prescribes just a particular brand they likely at times won't be able to supply me at all. I have had issues at times even with no particular brand - waiting for supplies to come in - so wouldn't like to jeopardise me getting any at all by insisting on just one particular brand. With another medication (not thyroid) I often can't get it and am searching around numerous chemists which is a pain (and is worrying if an important medication). The chemists around me aren't particularly efficient or that helpful really and often mess things up even telling me they can get a medication when I ring up as a regular customer and then when I get there to collect then telling me they can't get it and will have to then look elsewhere at the last minute. JHoots chemist near me has now stopped customers ringing about medication so have to go in all the time and many others like Boots very hard to get through to. Also the short one week period GP allows to order/obtain before medication runs out nowadays is sometimes not enough with supply problems but they won't allow more.

Thyroid Blood Results (done 1/8/24 10am)

serum FT4 12 pmol/L (7.8-21)

serum FT3 5.3 pmol/L (3.8-6)

serum TSH 0.22 mU/L (0.35-4.7)

So now on block & replace my T4/T3 are within range but TSH is now always low (was suppressed before). I understand a consistently low TSH does have some risks as read a post on here from studies which first said there wasn't a risk and then found later was some/small risk with low but not suppressed TSH which carries a higher risk as I understand. However from what I have read Graves can cause low TSH, among other things such as low/variable blood neutrophil count. Also last year was on a hyper/hypo rollercoaster as Feb was very hyper and put on Carbimazole and by May/June was severely hypo as GP didn't monitor bloods which was when put on B&R regime by endo so imagine this won't help my TSH stabilise.

Regards

LonelyPlace

[SlowDragon Administrator in reply to LonelyPlace]

Free T4 (fT4) 12 pmol/L (7.8 - 21) 31.8%

Free T3 (fT3) 5.3 pmol/L (3.8 - 6) 68.2%

You mentioned my Levo dose 100mcg may be too low but are you aware I have been on block & replace (40mg Carbimazole/100mcg Levo) since June 2023 for Graves disease and not just taking Levo for hypothyroidism?

yes I noted that

Your conversion of Ft4 to Ft3 is certainly very brisk…….

Ft3 is about perfect…..even though Ft4 is quite low…..especially if last dose Levo was only 10 hours before

My last thyroid bloods the Levo dose was not 24 hours before (probably around 10 hours before) - my last dose of levo would have been around midnight

if you increased Levo you might see Ft3 go too high

[LonelyPlace in reply to SlowDragon]

Hi

So I assume this means I am a good converter of T4 at present - so do you know if this would mean that Levo works well for me and I would usually do well if I say had treatment (RAI/thyroidectomy) and had to then just take Levo or would that be then a different question? (Getting a chance to ask endos these questions is nigh on impossible.)

I'm unsure whether this normally lasts for most people i.e. they are a good converter or not no matter what or whether it depends on like age, conditions, whether you still have thyroid or not etc. etc. It's just that I have heard a minority of people say they were doing okay on Block/Replace but then after treatment didn't do well on just Levo alone or in some cases that Levo worked for a period of time - some years and then they stopped converting well for some reason? It's just that whether I would be likely to convert well after any treatment would have a big bearing on whether to have it in the first place as I would obviously not want a poorer QoL than I already have and can't afford to fund my own treatment due to not working at moment although I want to work if my conditions could be improved. Live in hope.

LonelyPlace 🙂

[pennyannie]

Hey there again :

So I'm on the other side and post RAI thyroid ablation 2005 - as you probably remember -

If it helps at all -

I now aim for my bench marks readings of the core strength vitamins as minerals as :-

ferritin at around 100 - folate around 20 - active B12 around 125 ( serum B12 500++ ) and vitamin D at around 125.

Interesting , and refreshing, that your endo acknowledges the lower QOL post RAI -

guess he's obliged to suggest all options as RAI could well be the hospitals preferred treatment option -

so presume he needs to be diplomatic in the management of his words.

[LonelyPlace in reply to pennyannie]

Hi there again pennyannie - it's nice to hear from you again. I hope you are doing better now?

Yes I do know about the torrid time you have had since having RAI and then having to fund your own medication privately. Your own story and struggles with NHS treatment, although there are many others, is one of the main ones I have thought of when I have refused having RAI even though yes, my hospital pushes this as first line treatment (I don't mind saying it is Hull & East Yorkshire Hospitals (think maybe the Hull University Teaching Hospitals Trust).

Even though I have had, and still continue to have a ghastly time with Graves - it has only seemed to have become more severe over time (my endo told me it has) and that my high TRAb levels as well suggest much time in remission is not likely for me and that I can go overactive very suddenly so I don't really get much warning beforehand - seems to have the worst/biggest effect on my heart and then end up in A&E due to it - last time they wanted to admit me but I didn't want to due to having had terrible stays in hospital before and they don't cater for my swallowing problems in providing alternative foods I can swallow so I usually can't eat anything much - my partner had to bring in soup and whatnot.

For me Graves is terrifyingly frightening and think if it continues like this it may kill me - as endo says he will at some point take me off block & replace (when TRAb reduces) and try to titrate down carbimazole again even though he doesn't think I will achieve remission for very long (last time was barely 3 months) but I still don't really want to opt for any treatment options although I'm constantly mulling it over whether I should in my mind but I don't feel there is any way I can guarantee any better QoL outcome - it may be even worse.

How I am now is a shadow of my life before Graves. I now can't work (due to Graves and other issues), don't have holidays/travel anymore, feel tired after just going for food shop at supermarket and then need a rest so don't do much. Also worry about infections so wear masks as of now while on carbimazole as if get anything or even a sore throat I have to go to A&E and get blood tests due to risks of medication side effects which can cause sepsis but this involves extremely long waits in our local hospital - last time over 18 hours as was rated the hospital with longest waits in country, I think last year. So not something I want to repeat too often.

But even with all this I hear stories such as yours and, as I said, my endo even said about the worse QoL outcomes for people having RAI and don't want to end up any worse than I am now. Also with not being able to work, I can't afford to pay for my own private medications/tests/private doctors etc. should Levo not work well for me. Okay so I am taking Levo now on B&R but having low energy/tiredness/fatigue issues some days but don't know if it's due to that or something else which is what I'm trying to figure out now. Like could it be my age (I'm in my fifties) although I don't think it's normal compared to others I know or could it be something else (eg. vitamins). Levo may not work later on after I have had any treatment though as read about others who have said this even if they have had it previously pre-treatment.

Also have read about thyroidectomy but with my other health conditions as well I feel there could be too much risk for me and for one thing it could exacerbate my already poor swallowing issues if there is any nerve damage which can be caused during this. I do not want to end up being tube fed. Also afterwards the Levo issue still remains.

Also I know Graves is an autoimmune disease so just killing off or removing thyroid may not end the disease process as it can be multi organ (indeed I know you have issues with TED since RAI) and it can go on to attack any other organs my endo said like your heart or brain even so it could choose to attack something else instead. So I just soldier on with Graves medication not really going anywhere or in good health, seemingly stuck not knowing what to do for the best. I just don't feel the other options are going to be any better necessarily and could end up worse for me although maybe may take away risk of death due to out of control Graves. My endo now I would say is a lot better than I have had in the past and at least lets me decide which option I want to take - does not force me into RAI but did not say much at all when I mentioned about the NHS not willing to fund anything other than Levo if you are not well on it - so really confirmed my fears that anything else would not be funded. I have only seen him once in July last year and he has no plans to see me as yet so no chance to discuss things further. I think they are too busy trying to get those through treatment that they can and away from hospital and less focus on those choosing to stay on AT medication.

Doesn't seem like my vitamins are at all optimal then as I have my others just now from GP account. My ferritin 164 ug/L but no ref range given but just says "normal" unless this is measured in different units as would be high by what you said?

Serum B12 is 306 pmol/L (115-1000) so NHS say is "normal" but maybe on low side by what you have said but I eat no red meat (small amount chicken/fish occasionally) and take no supplement for this so maybe can understand that.

Folate is 4.4 ug/L - NHS say "normal" and just states that <3ug/L suggest deficiency but lot lower than you suggest? I am male so is this as important for me to have optimal levels? I am not sure what folate does TBH, and if optimal levels are as necessary for males as females?

As I said my vitamin D was only 55 from the private test I did (which NHS term as "sufficient") so I will have to supplement this now as it is too low and will only drop lower in winter. Possibly could be a cause for me feeling tired/lacking energy & strength maybe?

Anyway better stop waffling now as I can see I'm writing an essay again!

Many thanks pennyannie - all the best to you. 🙂

LonelyPlace

[SlowDragon Administrator]

my thyroid T3/T4 are in range now I am stabilised on B&R but my TSH has remained very low at every 3 monthly blood test although not suppressed.

What are your actual Ft4 and Ft3 results

Was test early morning and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

TSH may remain sluggish months or years after having suppressed TSH

Why there’s a time lag on TSH changing….and might not ever change if been suppressed long time

healthunlocked.com/thyroidu...

[LonelyPlace in reply to SlowDragon]

Hi SlowDragon

Thanks for all the info on B vitamins/folate - I will have a read of all that. You are definitely a wealth of health information on here!

Yes I will add my other results -I didn't do it as I didn't think you would neccessarily advise on those and there are a lot of separate tests contained within each test (i.e. full blood count/liver function/kidney function) as you will probably be aware and I will also send my latest T3/T4/TSH etc. and info you asked for later on as I have to go out now for a while this afternoon to take partner to a hospital appointment but will send asap. (I don't have smartphone just my laptop so can't photo them over - so will type them all soon.)

Many thanks

LonelyPlace