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test results please comment

Windsinger profile image
44 Replies

I guess I have Hashimoto's. Discovered it by chance. Have developed skin condition called Granuloma anulare, which is known to be linked with Thyroid autoimmunity... GP would not test for that, so did a private test, which came up with ATG ab at 457 ( norm is less then 115). Digging in more and it seems that my other markers are a bit off... Here they are TSH1.54, freeT4 13.8 ( 12-22), free T3 3.99 ( 3.1-6.8), T4 total 60.2 ( 66-181). TPO ab 9.0 is OK. Does it seem a bit low to you? It was like a light bulb came on... 20 years of exhaustion, depression and struggle explained in one test! I have been Sugar, Gluten, Grain, Dairy free for over 15 years now. Feeling better then 15 years ago, but it is hard work to keep going! I would appreciate any comments and suggestions. Never had any thyroid meds, or any meds for that matter... Should I ask for some?

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Windsinger
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maggiesloper profile image
maggiesloper

I would say yes, but take your results and to your doctor and request a low dose

Marymary7 profile image
Marymary7

I doubt the doctor will be interested with the TSH as low as that they will say you are fine. Did you get the antithyroglobulin antibodies measured that will give a good clue but the NHS don't care about that either as in my case.

You will need to know all your essential vitamin levels and iron too. We tend to pay privately and do a finger prick blood test at home.

Sorry but you will have good advice to follow later. 😀

Hashi-Monster profile image
Hashi-Monster

I cant tell from your profile if you are male or female or your age, which could be a factor.

From my own experirence I had similar results to you about 10 months before I was finally diagnosed and my TSH shot up to 18.5. But I was definitely symptomatic for 3.5years before diagnosis. It took me 5 doctors in 3 different countries before it clearly showed up in my blood work.

Unfortunately doctors wont take it seriously until your TSH is over 10. I can only recommend retesting in 3 months,

Also check, ferritin, folate, B12, Vit D; these are important nutrients for thyroid function. Taking a selenium supplement has reduced my antibodies, so you should consider this as well.

Windsinger profile image
Windsinger in reply to Hashi-Monster

Thank you for your replies, Hashi-Monster, Marymary7 and Maggiesloper. I am a 55 year old woman. Been running rings around my health for the last 20 years in a hope to sort out my energy levels and tendency for depression. You name it I have done it - diets, supplements, detox, mindfulness, exercise...

I am doing my blood tests privately now, as I am not exciting enough for the NHS... I actually look healthy and they think I am just a hypochondriac. I sometimes wonder myself if I am...

My thyroid globuline AB are 457, norm is less then 115.

B12 is 929 pmol/L, which is high

D is 96 nmol/L

Do not have ferritin, but transferrin saturation is at 50.27%, which is higher then norm of under 45% for women...

I supplement with B complex and 10 000 iu of D3 daily...But no iron sups...

Waiting for selenium sup to arrive through the post...

All I know I am tired of being tired and unmotivated...

Besides the above I have developed unbearable itching. mainly in my arms and mainly in the night, which means I do not sleep very well... I wonder if it is related to thyroid too...

Going to see a private consultant in a couple of weeks and want to be prepared. So any advice or suggestion would be appreciated.

From all I read here it seems I can do with a small dose of T3 to start with. I am going to try and ask endo for that... Do you agree?

Thank you all! x

Feelfreetorattle profile image
Feelfreetorattle in reply to Windsinger

Hi... check your CRP - an indicator of inflammation. Inflammation raises thyroid antibodies. I speak from experience and research. I got my CRP tested a couple of years ago as part of general testing - was really high. So were my antibodies. I've halved my CRP since then, and my antibodies are now well below max range. Sorting out CRP can be complicated - you need to know what is causing the problem. I still don't know all the causes of my own CRP, which is still a little high, but found 2 big ones and removed them - dairy and ear infections... have gone dairy free and I rinse my ears regularly now to help reduce wax build up.... lots of ear infections - that's another one - a clear indicator of thyroid disease. Not sure your skin condition is really related though - I happen to have had one (a lump) on the back of my hand - about 30 years ago. It's not a condition as such. It's not really known what causes it, but it's a build up of granules that could happen anywhere - I know a number of people who have had them, who do not have thyroid disease. I had mine removed - well the main lump (it had started to break up), and it never grew back and the smaller lumps just dissolved away. Itchiness is a symptom of thyroid illness, especially in the scalp and along the hairline. You need to get your antibodies down. Hope this helps :-)

Windsinger profile image
Windsinger in reply to Feelfreetorattle

Thank you :) It makes a lot of sense. I agree... I have been wheat, dairy and sugar free for 15 years! And in the last two years grain free and fructose free and almost all organic! I do not know where else to look... I do not get ill, infected, my skin is clear ( on the dry side) , I got rid of granuloma anulare by stopping vit D3... Sounds perfect, except I feel permanently unmotivated, low energy and could not exercise and my arms are itching like hell when I get hot... May be I am just lazy... Will do CRP for sure. Thank you for the tip. :)

Feelfreetorattle profile image
Feelfreetorattle in reply to Windsinger

Hi again. You seem to have cut out an awful lot of things - perhaps too many things? Have you done so based on tests or just trial and error? You are possibly deficient in a few minerals and vitamins, and possibly, electrolytes, even with a healthy diet in general. Do you use a good, quality mineral salt for example, eg Himalayan salt?

Removing vitamin D shouldn't make an improvement - unless you had extremely high levels or it was not being utilised for some reason. I suspect that you also have problems with fillers and bindings with your supplements and medications. I know I have - I have tried so many products over the years, and have been quite shocked at the ingredients and not surprised I have reacted. With vitamin D, it should always be vitamin D3, and taken with a fatty meal (it is a fat soluble vitamin), and with vitamin E and vitamin K to support it - otherwise it just builds up in the blood stream - and it doesn't help. It is called using companion nutrients when a vitamin needs to be taken with another vitamin. Hope I'm not telling you something you already know lol. Check out Dr Mercola's website... it's really quite informative. These days, I take an organic vitamin D3 capsule that is very pure, held only in olive oil... no really nasty fillers... available on Amazon.

As for gluten - I have had so many people telling me to give up gluten - I got a test done. I am not gluten intolerant - but it's when I had this test done, that I found out I was dairy intolerant. I admit it still might benefit me to give up gluten, as it can mimic hormones, but I have actually tried to do so, and found no obvious improvement. However, I only eat gluten in organic foods now, eg organic bread. I am a firm believer that we have evolved to eat gluten - we've been eating bread for over 2000 years.... and grains before that. However, what has changed, in the last 50 years or so, is that most grains are now coated with pesticides and /or treated with them, and / or are genetically engineered, eg glyphosates... so when the gluten does damage to your stomach, which we have evolved to repair, it is not just injuring your stomach, it is injecting poison directly through the stomach wall. Of course, we are all probably guilty of eating more gluten today than we did 50 years ago, and that probably doesn't help. Blue Horizon do a great test for intolerances - it's not the one I did, which is sadly no longer available, but it looks good - it's very expensive though. Again... hope this all helps in some way and good luck! x

Windsinger profile image
Windsinger in reply to Feelfreetorattle

I follow your logic :) Thank you. Yet, it seems that D3 in certain conditions can create problems... In my case it definitely did. Once I stopped taking vit D3, granuloma, which was spreading rapidly, cleared... Explanation is in the fact that vit D3 receptors on the cells ( VDR) are blocked in many autoimmune conditions by intracellular infections, which causes a disregulation of vit D3 metabolism. Here is an article pointing at this...

ncbi.nlm.nih.gov/pubmed/197...

Gerenrally speaking D3 is a wonderful supplement, otherwise.

Thank you so much for a considerate and detailed reply though. It is good to be questioned and challenged sometimes. The chase can make one forget one's destination :) .

Feelfreetorattle profile image
Feelfreetorattle in reply to Windsinger

Tell me about it lol! Been chasing the ideal treatment for 20 years now... getting there slowly. x

silverfox7 profile image
silverfox7

Most start with a dose of T4 and it mostly works well as you should convert the storage hormone T4 into the active hormone T3. T3 is also very expensive so yo my wouldn't be given that to start off with.

JAmanda profile image
JAmanda

No expert here, but your thyroid levels don’t look wrong, it doesn’t shout hashimotos to me - could it be folate? I agree get a fuller thyroid panel done privately.

Windsinger profile image
Windsinger in reply to JAmanda

My thyroglobulin Ab are 4 times higher then norm... 457, as opposed to suggested less then 115... I thought that meant Hashi... My other thyroid markers are free T3 3.99 ( 3.1-6.8), freeT4 13.8 ( 12-22), T4 total 60.2 ( 66-181), which is within norm but on the lower side... I read it has to be on the upper side... Am I missing something? I am just trying to understand it all... Not being defensive... I would be delighted to know nothing is wrong with it all... Would I make a fool of myself if I go to endo with these results?

MaisieGray profile image
MaisieGray in reply to Windsinger

Total T4 and Total T3 levels are not a great deal of use in diagnostic terms. The majority of both hormones are attached to their respective protein carriers in the blood, and it is only that portion which is unbound/free of those carriers that is available for use by the body. So the Total measure is of both bound and unbound hormones and doesn't tell you what percentage of it is in usable form, only the Free result tells you that. For that reason, its' a measurement that has largely lost favour in the UK since the Free tests were developed.

Windsinger profile image
Windsinger in reply to MaisieGray

thank you, Maisie. I get that. So how about my free T3 and Free T4 levels. Are they normal or low? What can you say about that? T3 3.99 ( 3.1-6.8), freeT4 13.8 ( 12-22).

MaisieGray profile image
MaisieGray in reply to Windsinger

A positive Thyroglobulin Ab result at lower levels can accompany several non-thyroid disorders, and at higher levels can be indicative of both Graves' and Hashimoto's. When accompanied by falling thyroid hormone levels, it might be presumed to indicate the latter. However, there is no medical treatment in any case, only possible lifestyle changes such as excluding gluten and/or dairy, although not everyone benefits from that. So Drs are looking to treat the resultant thyroid dysfunction that occurs as the thyroid is destroyed, but your FT3 & FT4 results albeit low in range, are within range; and your TSH is likewise low; and less likely to prompt a GP to begin treatment of Levothyroxine. To arrive at the reference ranges, theoretically at least, healthy individuals were tested, and the majority fitted within a statistical bell curve, with about 5% being outliers; hence why the reference interval is incorrectly referred to by many as the "normal" range, and why any blood test results within the range might be considered by a GP to not need treatment. That isn't to say that they won't treat, where there are symptoms accompanying the low thyroid hormone levels, but may not. The other factor is that with primary hypothyroidism, you would generally expect your TSH to be higher than it is, with those low in range results; so if a GP looks only at your TSH result, all will look well, as a level of 10 is the figure given within the NICE guidelines at which there might be a 'definitive' diagnosis in the absence of below range FT4 and FT3. Where the TSH is less elevated/ slightly over range, other factors should be considered such as symptoms and low thyroid hormone levels, but your TSH isn't even elevated within range. So the other factor is that a low in range TSH and FT4 and FT3 might be indicative of a central (secondary or tertiary) hypothyroid problem, and other members might add their opinion to that.

Windsinger profile image
Windsinger in reply to MaisieGray

Thank you Maisie. I get that too... From what I read, that is the whole point of such forums... It seems that present NHS guidelines do not reflect the reality of thyroid dysfunctions... I read a lot of people here gain well being by sensibly supplementing with hormone replacement. I do not have any hope that my GP will look into my situation, but hoping that private endo will take it a bit more personally, rather then fitting me into reference numbers... I might be wrong of course...

MaisieGray profile image
MaisieGray in reply to Windsinger

Remember that the NICE guidelines are those of NICE and not the NHS, and they are only guideline not absolute rules; both of which mean that GPs aren't hog bound by them. That means of course, that they can instigate treatment if they deem it appropriate for you - which is your bartering tool. However many do tend to be hog bound by their poor and limited training in thyroid matters. Regarding private Drs, you can't assume they'll go either way, given that they have been trained by the same medical schools as those working in the NHS. You can't assume they are necessarily better or more skilled per se; which is why personal recommendation is important.

helvella profile image
helvellaAdministratorThyroid UK in reply to MaisieGray

And they are not NICE guidelines - but Clinical Knowledge Summaries now under the wing of NICE.

They do not have the status of NICE Guidelines. Formal NICE Guidelines are under development but not yet ready.

JAmanda profile image
JAmanda in reply to Windsinger

Never worry about looking a fool. Maybe get an Endo recommended by Thyroid Uk? I’m 53, so menopausal do it’s inpossible to know which symptoms are ‘just menopause’ or thyroid or b12 or folate or what! I’ve been low in all three over the years. Right now I’m meducating with cake and wine! And levo, b12 etc. Seeing Endo next week then will make a more sensible plan 🤪

I feel for you. Try and find a doc you can trust.

Windsinger profile image
Windsinger in reply to JAmanda

Ha ha! Good tip... Cake and wine... I bet it makes you feel better :) There are other versions of it, I would leave it to your imagination :) Good luck and thank you for encouragement. Yes I booked with endo from the list. hope he can help... x

SlowDragon profile image
SlowDragonAdministrator

Recommended to start with Levothyroxine.

Standard starter dose is 50mcg. Bloods should be retested 6-8 weeks after each dose change

Dose is increased slowly in 25mcg steps until TSH is around one and FT4 in top third of range and FT3 at least half way in range

Only then will you know if you need the addition of small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

tukadmin@thyroiduk.org

Windsinger profile image
Windsinger in reply to SlowDragon

great. Thank you for your clarity... So, do you think it is worth it going to recommended endo with these results? I found one from the list and waiting to see him... I am afriad of making a fool of myself...

SlowDragon profile image
SlowDragonAdministrator in reply to Windsinger

Yes I would. I would expect they would agree to Levothyroxine trial

DNA testing might help if you eventually need T3 added

lidoplace profile image
lidoplace

Hi there I had GA recurring on my hands years before I was diagnosed hypothyroid. GP laughed it off saying it means they don’t know what it is , but never tested my thyroid levels. If I’d started taking NDT then my life would have been very different. Have not had a recurrence since thyroid treated. Your FT’s are low , have you had DNA tested for DIO2 polymorphisms which could also be affecting your levels ?

Windsinger profile image
Windsinger in reply to lidoplace

That is great news, that your GA is gone now! Wonderful! Something I can look forward to :) Do not know anything about DIO2... How/where do you test it? Oh, it is such a mine field! But I am determined to get to the bottom of it! So, are you treated with NDT? Prescribed? Thank you :)

MaisieGray profile image
MaisieGray in reply to Windsinger

From the little I have read, there is yet no concencus regarding the association between your skin condition and thyroid disorder; some say no, some say maybe but for different reasons, and one school of thought is that the link is that they each have a certain factor (sorry, I forget what), rather than that the conditions themselves are connected. If you which to consider testing for DIO2 genetic variants then I'd recommend Regenerus Lab. However, there is no indication in your blood test results that you have a T4 to T3 conversion problem; and remember that being homozygous or heterozygous positive for a particular variant is not a diagnosis, only an indication that there may be an issue, but not that you will necessarily be affected by it.

SlowDragon profile image
SlowDragonAdministrator in reply to Windsinger

This DNA test looks at various genetic issues that can affect Thyroid. But not a "medically recognised " test as there's no counselling

Sometimes on offer at £99

bluehorizonmedicals.co.uk/t...

This is the official medically recognised test just for DIO2 which has to include counselling

thyroiduk.org.uk/tuk/testin...

bookish profile image
bookish

Interesting that you say Granuloma Annulare is linked to autoimmune thyroid, which I hadn't heard - I had a single large rash 30 years ago and was told it was a sign of possible diabetes so had fasting glucose which was fine. Have also read it can be linked to glandular fever, which I had had the year before. Have been having multiple autoimmune problems for 8 years or so, possibly one for much longer, and suspect my thyroid issue is AI too. Although I haven't yet finished the book (a recent present to myself!), I would recommend Datis Kharrazian's 'Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal' - full of interesting info on Hashis and autoimmune generally. Recently finished Tom O'Bryan's 'The Autoimmune Fix' - also extremely good. Best wishes.

Windsinger profile image
Windsinger in reply to bookish

Thank you for your recommendations. I will definitely look into it. As I was diagnosed with GA, dermatologist offered me steroid cream with a comment that it probably would not work, then as I was walking out of his office, he said GA is often linked with diabetes or autoimmune thyroid... I thought I would ask GP to check both... Wouldn't it be logical? Nope... Steroid cream it is... Straight into the bin... Then I ordered full thyroid panel privately and it turns out I have thyroid globuline AB elevated! Surprise! I am very frustrated right now...

bookish profile image
bookish in reply to Windsinger

That is crazy, why are they so illogical? You would think the GP would at least check for diabetes even if they don't understand autoimmune conditions. (I saw a dermatologist for vitiligo which he didn't seem to be able to see at all, and a rash (I'd had acne for 40 years and nothing had ever helped) - he insisted that I had an infection and needed yet more antibiotics. What I needed was to come off gluten - the acne vanished, as did the rash, and the vitiligo slowed right down although obviously (to me!) still there. )

Windsinger profile image
Windsinger in reply to bookish

I despair hearing all these stories! :( good luck with your health, sounds like you have cracked it :)

HypoG profile image
HypoG

Hi Windsinger

so interesting to see GA come up. Have had Hashimoto's (for 20+ yrs) and GA patches have come, gone and returned on my legs for all that time and longer.

GP originally said it was diabetes related - (which I don't have) but that was prior to thyroid diagnosis. Another since GP suggested it's auto-immune related..

So - you're not alone!

Has anyone out there found a way to "cure" these patches? apart from patience 😉

Would be interested to hear, thank you 😀

Gilly

Windsinger profile image
Windsinger in reply to HypoG

Mine are actually nearly gone... I stopped taking high doses of vitD, which I had been taking for over a year at 10 000 iu daily prior to GA appearance ( there is info about D receptors on the cells being compromised in this condition and adding D3 can aggravate it) and also I started taking Low Dose Naltrexone, which is supposed to help with autoimmunity. It has been three months and I only have a very faint patch left on my ankle, bumpy patches on my arms gone... May be it is just a co-incidence.. Who knows... So now I am zumming in on my thyroid... Trying to work out what is going on from a wider perspective... Learning a lot from here, but still not sure about my original post, re my thyroid panel results... are they normal, are they not?

HypoG profile image
HypoG in reply to Windsinger

Hi again

In respect of your test tesults - the antibody results would suggest Hashi's for sure.

As for the TSH and T3 /T4 - thats so subjective. It depends on what your "healthy normal" is. And of course, that's not measured when you're feeling fit 😏

I can't work the tech to remind me of actual numbers whilst replying🙄 bear with me and ill check on them and share my thoughts 😊

gilly

HypoG profile image
HypoG in reply to HypoG

Ok -

TSH doesn't look bad, but no context for your "normal". I'd check with GP to see if it was ever measured for another reason in the past, just to see if it's changed. In any case TSH can be a red herring... see other posts re relying on TSH for a diagnosis!

T3 and T4 are at low end of the range, so you could put your case for a levo (t4) trial. But do follow the collective wisdom on this site, regarding your next steps. One thing at a time and be guided by your body...

If you do have Hashi's - (my assumption was that high antibodies = autoimmune) you may find absorption of vitamins and minerals is compromised. ( Ferritin, Folate, D, B12) Getting those right really helped get my mojo back...

gilly

ps good to not take such high levels of D3 long term 1-2k units better. (test to see what works for you) btw - are you taking K2 with it as a co-factor? check out Seaside Susie's words of wisdom on this 😀

Windsinger profile image
Windsinger in reply to HypoG

Thank you Gilly. Yes I learnt hard way re vit D doses... Yes taking K2, thank you :) My THS was around 1 about 2 years ago ...That's why GP would not test it again two years later...And yes, relatively to my healthy self, which I am starting to forget, I feel slightly unwell all the time... My basal temperature is never above 36.0C, often below 35.5C. I have not read a book in years, could not focus ( my healthy self likes to read), I can't motivate myself to do anything ( my healthy self is "up and go" kinda person), only if I have to, like work and basic domestics... I find it difficult to wake up, I sleep 10 hours a night easily....My body aches slightly all the time, I am used to it and just ignore it...I do not like myself in this state... Some days better then others, but never 100%... I think I qualify for a levo trial...I will try...thank you for your reflections. :)

vocalEK profile image
vocalEK in reply to Windsinger

You might find this article helpful. It explains several possible causes of high or low TSH.

verywellhealth.com/understa...

molliemo18 profile image
molliemo18

Fascinating to read you had Granuloma anulare, when I developed it on my legs over thirty years ago, saw a skin specialist several times, he prescribed some tablets (forget what they were) for a couple of years or so, then he said I should not continue long term on them. So stopped the treatment and eventually most of the skin problems disappeared on their own. I had no other symptoms, and was never told they could be linked with other 'problems'.

Windsinger profile image
Windsinger in reply to molliemo18

I am curious now. So, do you have any thyroid issues? I guess you do, as you are here... And when your GA disappeared were you on any thyroid meds? When I was diagnosed with GA I of course went on internet and looked it up! So many people struggle and it could spread. I did not like this prospect. So I am trying to get to the root of it... Link to thyroid is one strong possibility...

molliemo18 profile image
molliemo18

Three years ago I had a blood test & it showed a high tsh, against my better judgement, as I had no symptoms, I agreed to take 25mg Levo; after 12 months, my T3 & T4 had lowered from normal, but what was more concerning to me was that my haemoglobin had bottomed out, never having had that problem in my life (I have just given my 100 blood donation!) and being very active, I was extremley concerned. Having then read one of the NHS leaflets, that said reducing tsh could induce aenemia, I felt that was what had happened to me. This time I saw one of the doctors who know me, she was happy that I stopped taking Levo and see what happened. After 12 months of no levo, T3 4.3 T4 8.4 Haemoglobin back up to 137, a whole page of other results all normal - no action. One of the other people on this page said there was a known condition where a high tsh with no other symptoms was known (I forget the name). Some of the other correspondents were very critical, one even saying my doctor was signing my death certificate!, so I stopped adding any comments for six months, just reading the headlines, in fact I had to renew my password when I saw your post, as I wanted to add my comment. When I had GA there was no internet to look it up, when I did not improve with the tablets, the skin specialist advised stopping the tablets, I did and after a few years the GA disappeared. I have none of the symptoms of thyroid problems, so guess I am just a bit of an oddity! I realise how many people suffer from poor diagnosis, in effective treatment and no one treatment suits all. When the last blood test came out normal (except tsh 22.52!) the doctor agreed not to call me in for 12 month blood tests, as my tsh was never going to be normal (maybe I have had a high reading for the 74 years on my life!) but that I would go in to see her if I developed any thyroid symptoms.

Windsinger profile image
Windsinger in reply to molliemo18

Wow. Fascinating! Thank you for sharing. Just proves the point many are making here that the best way is to go by how one feels. Although your ths seems so very high.... Have they checked your pituitary? Something interesting is going on. Glad you are feeling good though... As for me, my tastes are within norm, on the low side and I feel off all the time, for years now....tired, unmotivated, sleepy, foggy... Hope some thyroid sups would help... I will give it a go...

molliemo18 profile image
molliemo18

What would the pituitary test be called on my last print out, there is a page of results! with names that mean nothing to me! It may or not be there.

Windsinger profile image
Windsinger in reply to molliemo18

I don't really know either... Sorry. I just thought doctor would suggest something as it is so high... Sounds like you are well though, so purely intellectual query...

SlowDragon profile image
SlowDragonAdministrator in reply to molliemo18

molliemo18

Other indicators of Hypothyroidism

High cholesterol

Low vitamin D

Low B12

Low ferritin

Low folate

Poor kidney function

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Not surprised your iron levels dropped on only 25mcg Levothyroxine. Standard starter dose of Levothyroxine is 50mcg and bloods should be retested 6-8 weeks after each dose increase.

Levothyroxine increased slowly in 25mcg steps upwards until TSH is under 2. Typically that's somewhere between 100mcg and 200mcg Levothyroxine daily

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

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