I've just got some private blood results and wanted to ask advice on how best to proceed - especially with how to begin treating vitamin D deficiency but I am open to other advice on my related results too. Thank you for reading and in advance for any advice you can give!
Background:
I am a man in my mid 30s and suffer from congenital hypothyroidism. Whilst I lived what I considered quite a normal life before 2013, a GP then decided to change my levothyroxine dose on a whim and I have experienced a lot of health difficulties since - primarily fatigue, but also weight gain and generally worse cognitive performance. I've spent a lot of hours with NHS and private doctors and didn't get anywhere so have been looking at what I can do to treat myself and get the best quality of life possible.
I previously worked a corporate office-based career but gave this up last year due to a number of factors, with a large part being that the commute and the rigid hours weren't compatible with my long-term health issues. In the past year I've done 4-5 weeks of freelance work which has suited me better, but I am struggling to imagine a life where I am able to consistently work part- or full-time. Furthermore, whilst I felt on a more even keel in the summer than I had in some time, I've definitely deteriorated again in the past 2-3 months and am feeling very run down and unrefreshed even after a long sleep and plenty of other rest.
I have been self-medicating with liothryonine because of confusing previous blood tests where I had both high TSH and high T4, leading me to believe that I have a conversion problem. Presently I take 175mcg of levothyroxine and 12.5mcg of liothyronine daily.
Latest Results:
Due to the deterioration in my overall energy levels in the winter, I had suspected that perhaps vitamin D deficiency may be involved but also open to my thyroid medication doses still being able to be improved. I took Blue Horizon's Thyroid Premium Gold test and these are the notable results (with their reference ranges in brackets):
Thyroid Function:
TSH: 0.11 (0.27-4.20) mIU/L
T4 Total: 155.0 (66-181) nmol/L
Free T4: 25.4 (12.0-22.0) pmol/L
Free T3: 6.00 (3.1-6.8) pmol/L
Vitamins/Iron:
Vitamin D: 23 (50-175) nmol/L
Vitamin B12: 251 (145-569) pmol/L
Ferritin: 243 (30-400) ug/L
It's quite clear to me from the above that I need to supplement vitamin D. What product do people recommend for this? I understand that one needs to begin with a larger dose to reset the levels before settling into a maintenance dose, so I'd be interested to hear from people with more experience in this who can suggest how I should start out here. I'm also interested in any related experiences people may have and other suggestions on how I can proceed given these results. Thank you in advance for any help you can give.
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AndyPy
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I have been self-medicating with liothryonine because of confusing previous blood tests where I had both high TSH and high T4, leading me to believe that I have a conversion problem.
Do you have results and reference ranges for TSH, FT4 and FT3 for this time, before you added T3?
Presently I take 175mcg of levothyroxine and 12.5mcg of liothyronine daily.
TSH: 0.11 (0.27-4.20) mIU/L
T4 Total: 155.0 (66-181) nmol/L
Free T4: 25.4 (12.0-22.0) pmol/L
Free T3: 6.00 (3.1-6.8) pmol/L
Your current doses are giving you an over range FT4 with upper range FT3. When taking combination hormone replacement one usually sees FT3 in the upper part of it's range with a lower FT4. You may be better if you reduce your Levo. If those were my results (and I take Levo plus T3) I would reduce Levo by 25mcg then retest in 6-8 weeks (minimum) to see where my levels are. This should reduce the FT4 and it may well reduce the FT3 as well depending on how much natural conversion you have. It might be that you could do with less Levo and ultimately a bit more T3 to give you a lower FT4 but keep your FT3 in the upper part of it's range. Finding the optimal dose of each hormone replacement can, unfortunately, take a lot of tweaking over a considerable amount of time.
As you haven't posted the antibody results, am I right in assuming these were negative?If positive that suggests autoimmune thyroid disease, aka Hashimoto's, which can lead to gut and absorption problems leading to low nutrient levels and deficiencies.
Vitamins/Iron:
Vitamin D: 23 (50-175) nmol/L
This is Vit D deficiency and ideally you would see your GP about this and he should follow the NICE guidance:
"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
This is something you can do yourself if you prefer, following the guidance above. I had Vit D deficiency with a level of 15nmol/L and I did self treat, I never went to the GP about it.
Once the loading doses have been completed you will need a reduced amount so you should make sure that you are retested after you have finished the loading doses so that you know how much you should then take going forward. Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. If GP wont retest then do this privately (link below) and post your new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Council/the Vit D Society - which is 100-150nmol/L - and then you'll need a maintenance dose 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. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
I used Doctor's Best D3 softgels (and still use them for my maintenance dose now that my level is optimal). They are a good, clean supplement with no excipients, just D3 and extra virgin olive oil.
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3.
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.
I use Vitabay or Vegavero K2-MK7.
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. 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.
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
If you do not have any symptoms then you could supplement with sublingual methylcobalamin 1000mcg, along with a good quality B Complex to balance all the B vitamins. Many members here use Thorne Basic B or Igennus Super B, both are good supplements with bioavailable active ingredients.
Finish one bottle of the sublingual methylcobalamin then just continue with the B Complex.
What was your folate result?
Ferritin: 243 (30-400) ug/L
Ferritin is recommended to be half way through range so yours is a good result.
> Do you have results and reference ranges for TSH, FT4 and FT3 for this time, before you added T3?
I think I am missing some results in my records which I will try to correct. The latest one I can find is from September 2017 where I had:
- TSH: 5.23 (0.27-4.2)
- Free T4: 24.2 (12-22)
At this time I was taking levothyroxine only: 175mcg on weekdays and 200mcg on weekends. I since reduced the dose to 175mcg daily and added half a tablet T3 daily. I would say this has had me feeling better but still not as good as I'd like and as I said in the original post, I feel I've taken a step back again this winter.
> You may be better if you reduce your Levo. If those were my results (and I take Levo plus T3) I would reduce Levo by 25mcg then retest in 6-8 weeks (minimum) to see where my levels are.
This sounds sensible to me and I will give it a go - thanks for your advice.
> As you haven't posted the antibody results, am I right in assuming these were negative?
I assume this is these two results - if so, I believe everything is looking OK on this front?
Anti-Thyroidperoxidase abs: <9.0 (<34) kIU/L
Anti-Thyroglobulin Abs: <10 (<115) kIU/L
> This is Vit D deficiency and ideally you would see your GP about this and he should follow the NICE guidance
I am a bit concerned about seeing the GP given my bad experiences in how they focus on the TSH number in particular and to the exclusion of the others, but I will see what I can do about discussing this vitamin D result in isolation with my GP.
Thank you for advice about loading doses and the link to a finger-prick retest, I guess I can pursue this myself if needs be.
> Vitamin B12: 251 (145-569) pmol/L
> This is way too low and could be causing symptoms. Some people with B12 in the 300s have been found to need B12 injections.
This is interesting and I'm glad I shared this result too as it hasn't been flagged up as out of range on the blood report.
I would say I don't experience most symptoms on that page, although I do have some nocturnal cramping and, as I mentioned, some forgetfulness/reduced cognitive function too.
I guess if I am discussing the vitamin D results with my GP then I can bring this up too although I'm not sure they will act if this inside the reference range?
> What was your folate result?
Serum Folate: 13.30 (8.83 - 60.8) nmol/L
Thanks again for your reply and especially the advice about vitamin D doses. I will try the GP first but will be prepared to treat myself with the advice you've linked if necessary.
I guess if I am discussing the vitamin D results with my GP then I can bring this up too although I'm not sure they will act if this inside the reference range?
GP won’t be remotely interested in B12 levels....as they are “within range”
But on levothyroxine we need OPTIMAL vitamin levels
Getting vitamin D up to at least around 100nmol (with or without GP involvement)
Getting B12 and folate optimal should help too
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 and will help improve B12 levels too
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)
Or Thorne Basic B is another option that contain folate, but is large capsule
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 B12 result under 500 taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then 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 think I am missing some results in my records which I will try to correct. The latest one I can find is from September 2017 where I had:
- TSH: 5.23 (0.27-4.2)
- Free T4: 24.2 (12-22)
At this time I was taking levothyroxine only: 175mcg on weekdays and 200mcg on weekends.
It's unusual to have a high TSH with a high FT4 so I can't understand why your results would be like that. With an over range FT4 one would expect to see a low in range TSH. You were taking a highish dose of Levo. I don't suppose you remember what time you took your last dose of Levo?
We always advise here, when doing thyroid tests, to do the following:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
I since reduced the dose to 175mcg daily and added half a tablet T3 daily.
We always advise, before adding T3 that TSH should be down to 1 or lower to give highest FT4 and see where FT3 lies. If FT3 is low with a high FT4 that tells us conversion is poor. Testing nutrient levels is essential before adding T3, we really need them as close to optimal as we can before the addition of T3.
I assume this is these two results - if so, I believe everything is looking OK on this front?
Anti-Thyroidperoxidase abs: <9.0 (<34) kIU/L
Anti-Thyroglobulin Abs: <10 (<115) kIU/L
Yes, those results are nice and low so don't suggest Hashi's. However, just to complicate things, one can have Hashi's without raised antibodies and an ultrasound of the thyroid would show any problems. With Hashi's one would also very likely experience fluctuations in symptoms and test results with swings from hypo to a false "hyper" and back again so that's another clue.
> This is Vit D deficiency and ideally you would see your GP about this and he should follow the NICE guidance
I am a bit concerned about seeing the GP given my bad experiences in how they focus on the TSH number in particular and to the exclusion of the others,
I fully understand. I have a difficult relationship with my GP who is TSH obsessed, one reason I self treated my Vit D deficiency, I just couldn't be bothered.
> What was your folate result?
Serum Folate: 13.30 (8.83 - 60.8) nmol/L
That's too low, you're looking at a level of at least 35 with that range. The B Complex will help. Also, check out folate rich foods.
> Vitamin B12: 251 (145-569) pmol/L
> This is way too low and could be causing symptoms. Some people with B12 in the 300s have been found to need B12 injections.
This is interesting and I'm glad I shared this result too as it hasn't been flagged up as out of range on the blood report.
I would say I don't experience most symptoms on that page, although I do have some nocturnal cramping and, as I mentioned, some forgetfulness/reduced cognitive function too.
Your GP wont be worried by this result. With B12 they are supposed to go by symptoms, not numbers. However, it may be that you don't have B12 deficiency as you say you don't experience most symptoms. Nocturnal cramping could be low magnesium so you could see how you go once you've started a magnesium supplement. I regularly take a magnesium supplement but do occasionally still have night cramps. What I do is keep a tube of magnesium gel handy and rub some in, takes a few minutes of massaging it in but eventually it eases.
Also I keep a tub of New Era Mag Phos in my bedside cabinet, tiny little homeopathic pillules, take the recommended amount immediately the cramping starts, dissolve under the tongue in seconds and this usually relieves it within a couple of minutes, along with the magnesium gel (or sometimes just the Mag Phos):
Always do thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test....and last 6.25mcg T3 12 hours before test
>Are you currently splitting T3 into 2 x 6.25mcg daily, roughly 12 hours apart
Currently I take it in one dose with my levo in the morning - so this could be another simple change to make, perhaps, if this is something that is working for others.
>As matter of interest.....What dose levothyroxine were you on before GP meddled inappropriately ?
I think it was 225mcg - I'd been on it for several years. I was quite comfortably working 50+ hour weeks, had trained for and run two half-marathons in the few years beforehand, still had plenty of energy for hobbies etc.
As well as the dose change I then did then take on a very stressful new job and had a lot of other stressful personal issues in a short period including a surprising death in the family, and I think all of this compounded into a horrible period of health, however the thyroid element does all seem to have started with this doctor out of the blue deciding to do a blood test and changing my dose despite no symptoms.
>Cheapest option for just testing TSH, Ft4 and Ft3 is via Monitor My Health
>£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
Thanks for these links, this is a much better price if I'm going to do a few retests in quick succession.
Hiya, Haven't had a chance to read the other replies, so apologies if this has been covered already... In terms of supplementation, I'd definitely recommend going for a liposomal and sublingual (under the tongue) formula. These are much better absorbed as they don't have to make it through the digestive system. Injections are best, followed by sublingual liquids, capsules, and then tablets.
I’m only passing this morning, I’m not an expert in this field but I am a thyroid sufferer, under active, since the pregnancy and birth of my daughter 15yrs ago, I get shocked at how higher dose some people are on re-there medicine sometimes, mine thankfully always been pretty low, I’m on 100micrograms atm of Levothyroxine, but in all honesty since covid I’ve struggled to get in with my Gp and I don’t want to go near hospital, not because I don’t want to get covid but on my last bloods taken they used a different syringe (bigger than usual 🤔) and it left with scar, I don’t trust the medical health practices atm 😔, what I can say is this .... I can’t afford to go private and so for many years in frustration of feeling like most of the GPs or specialist I spoke to couldn’t answer any of my questions re-the thyroid condition and treatment versus cause!? Plus they don’t offer the tests that I’d like to be able to have ( because it’s all about the conventional way!) I resorted to seeking my own answers through information on net over the last 10yrs and have found that qualified functional health professional advice to be the best! I found this as soon as I start reading into it the condition and how it can begin and it make far more sense, I realise that not everyone can see it this way 🤯 but for me personally I felt instant synchronicity With way the functional health approaches this condition which is becoming an epidemic in itself! I’ll pop on later but for now will say that the functional health approach looks at the body system and analyses Your diet/stress/depression and other past practices or experiences that have along the way comprised your internal systems and immune systems, The bodies Microbiome Is playing a big role here too, if you fancy checking out a few pgs/podcast to listen and see if you feel a connection re-your symptoms versus their approach I’d maybe suggest checking out the likes of: Dr Mark Hyman, Dr Ben Lynch, maybe even Dr Gabor Mate ( qualified retired physician and psychologist ) Dr Todd LePine who joins in in Mark Human pod cast sometimes, you’ll come across other specialists too, your right to look at your vitamin D I’d say but it’s bit more complex than that.... as we’re all so different x let me know if do decide to check any of the above out and if it’s any help? I have to just listen and take from the suggestions advised and discussions on these sources and use what I’m able to afford to change in daily diet and practice 😔 but I do think it’s far more helpful than the conventional advice I’ve received which has been rubbish quite frankly in my experience, my next bloods will be interesting as I’ve not been taking my meds for last few weeks as I’ve not been able to collect my prescription, but I’m supplementing and eating organic fresh where possible? I’ll give an update and more details of how I’ve felt soon. But for me , my current life circumstances are largely responsible for levels of stress to creep in and depression x
That's OK, I think it all made sense in context anyway!
I've had an underactive thyroid since birth so I think some level of treatment of that is going to be inevitable, however I am open to other ideas too. I have completely given up alcohol in the past year which has made a big difference and if there are similar changes to e.g. diet that I can make then I am open to that. I do listen to podcasts and have heard Gabor Mate in particular talk some sense in the past, so will check out your links - thanks.
Really sorry to hear that it’s a condition that was diagnosed at birth 😔💜 I have only come across one friend who has experienced this and her medication high, it breaks my heart, I wish I could talk to some of the experts I follow directly, I know known you leave comments if they’re and they pick your out but long shot, would be sooo interesting to know what causes can result in birth diagnosis? Mothers system compromised? I learnt in Dr Ben Lynchs book that for a lot women who get prescribed folic acid through pregnancy as I did! That it’s a synthetic man-made form of the natural folate. And apparently the bodies methylation system can struggle to process this and it can begin to cause problems 😔 I’ve recently been diagnosed through bloods I requested st the Gp with extremely low folate ( after telling them that I felt like I was loosing my mind and memory?) straight away they wanted to put me on folic acid!? So I told my information source and that I wasn’t happy taking it and why! I asked if they could prescribe natural folate but they said no! So because you can cause just as damage over dosing on folate I found out what amount I needed and ordered some from an America supplier who a throughly checked out first.
Also reading Dirty Genes by Dr Ben Lynch which is very insightful haven’t completed it but just keep going back to it, it very helpful in understanding looking after our own personal immune systems
Our stomachs are our second brain and connected through the polyvagal nerve at the top of spine which connects the brain to our nervous system 😔 these factors play a big roll in immune health and how our bodies respond or cope when under pressure whether that be outside factors or poor nutrients or no nutritional value in your diet our foot cleverly sends message to our bodies
Hi AndyPySo frustrating when GPs meddle with things they don't understand fully! I was diagnosed with autoimmune hypothyroidism back in 2008 and have been on the rollercoaster. I'm also pretty deficient in D3 and struggle to get it to a decent level.
Have you ever been referred to an endocrinologist? That would have been the first thing I'd recommend when seeing your unusual results of high TSH and high FT4. Both are above reference range, which is very strange. There can be other issues causing this, so getting it properly checked out would be your best course of action.
This is a really useful article with a chart on what TSH/FT4/FT3 results combinations might be caused by: ncbi.nlm.nih.gov/pmc/articl...
Scroll to the bottom for comments on high TSH and high FT4
Saying that, your latest results look much better - so it may well be you don't convert to T3. I'd still be asking for a referral to an endo though to make sure. You're now above range FT4 and top of range FT3 with below range TSH (not unusual when taking T3). It would be useful to know how long after your meds this blood was taken as that can make a difference. I agree with the above comments on reducing your T4 dosage. If you manage to get a referral to an endo, you might be lucky that the endo recognises the old results. To be certain, you may want to cut out the FT3 out for a period so your TSH and FT4 results show your issues of high TSH and high FT4 clearly.
On your other results, I'll only comment on your D3 - this is significantly below range and is classed as deficient. The lowest mine was recorded was 36 and deficient. Its only once been higher than 100 with supplementing - and that was after an injection. It was amazing! If you can I would really recommend a D3 shot - it lasts about 3 months and its quite literally the best I've ever felt (it was given to me by an NHS gastro). Hypothyroidism is associated with low D3, so its not unusual for us to have to supplement.
This is a useful chart published by a CCG showing pathways for treatment (and has some interesting links: ouh.nhs.uk/osteoporosis/use...
Good luck in feeling better - the D3 should help immensely, and apparently helps with thyroid function (and potentially conversion). ncbi.nlm.nih.gov/pmc/articl...
I have seen numerous endocrinologists, including a very expensive private endocrinologist one street away from Harley St in London (I had private health care from my employer at the time). Unfortunately that one in particular was fixated on my weight and especially my neck measurement and seemed to think that was the root cause of my issues - I pointed out that I had previously been very active and had put on the weight as a result of my health issues rather than it being the underlying cause, but this fell on deaf ears.
I had all sorts of tests for other potential adrenal issues all of which never went anywhere - I still remember this endocrinologist telling me he had "great news" at one of my final appointments, only to tell me that he'd eliminated all of his theories as to where we could go next with treatment. He seemed genuinely perplexed when I asked how this could possibly be described as good news given that I continued to experience symptoms.
I guess I need to speak to my GP about the vitamin D issues as others have recommended so we'll see if they want to refer me anywhere about my thyroid issues too, but I won't hold my breath about anyone being able to help with me feeling better given my past experiences. I appreciate all the replies here as hearing other people's experiences is giving me more confidence in being able to take more ownership of treating myself instead.
Its so frustrating! Sorry to hear you've had no luck with endocrinologists - quite frankly, that is appalling. And you don't have hyperthyroidism - I would not stand for anyone telling you that!
The two conditions mentioned in the link that I hope your endos checked for is a TSH-secreting pituitary adenoma and thyroid hormone resistance. If all issues have been ruled out they should not just abandon you! But we all know how that goes in most cases… its atrocious.
I got relatively lucky - I've only had really bad treatment by a couple of GPs - one of which in her negligence sent me all the way back to pre-diagnosis and has possibly hastened osteoarthritis and need for a hip replacement (I'm in my 40's so this shouldn't happen normally!) due to her meddling. Where are you based? If in London, the endocrine clinic at Guys and St Thomas's is quite good in my experience - I was initially diagnosed privately (due to NHS incompetence) but was referred to G&ST in 2016 after the disaster of having my T3 medication removed without my consent. I've seen three separate endos there all of whom have listened, investigated and have been very supportive, and finally got me T3 prescribed on the NHS (together with a GP who was willing to work together).
Definitely get your D3 sorted out - that could really help. My advice - one thing at a time, see how it impacts your health then try rectifying another issue. Its slow, but it will get better. And yeah - this community is great - its really helped me understand things a lot better and educate myself!
Haven’t currently got the book as I borrowed it off of a friend but there’s very interesting section on thyroid health in the book which published in America, by a qualified doctor who went on to study functional health and her and husband started the less mills work out programs, can’t think of the title I’ll come back with it! But she advised her patience to assess the level of heavy metals in their system too remove any dental Mercury And make sure there detoxification/ methylation was working well, which of cour doctor Ben covers in his book.
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