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Thyroid UK
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Scared about my results

I'm new and had my latest bloods back.

TSH 187.3 (0.2 - 4.2)

Free T4 9.1 (12 - 22)

Free T3 2.7 (3.1 - 6.8)

TPO antibody 704.5 (<34)

Vit D 41.5 (25 - 50 deficiency) taking 800iu

Ferritin 22 (30 - 400) taking ferrous fumarate

Folate 2.3 (2.5 - 19.5) taking folic acid

Vit B12 247 (190 - 900) taking B12 injections

I have symptoms of sweats, goitre, catching colds and viruses, dry skin, feeling cold, periods very heavy, heart is very slow and feels like its rolling about in my chest. Could anyone advise? I take 200mcg levo diagnosed 2012 thank you

22 Replies
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Hi, I'm on a learning curve myself but you'll get some knowledgeable replies from others. Are you already taking any thyroxine? You definitely have a problem there, even I can see that! I've read that avoiding gluten helps with the thyroid antibodies. Welcome to the forum - there are some really helpful and knowledgeable people here.

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Sorry yes I take 200mcg levo diagnosed 2012

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Add that to your post, as it will help others give the best advice. Use the drop down menu underneath your post to edit the post. Are you just under a GP or do you see an endocrinologist?

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Endocrinologist

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Also, did you have any tests done for ferritin, vit D, B12? These can be adversely affected by thyroid problems.

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Yes I supplement for these.

Vit D 41.5 (25 - 50 deficiency) taking 800iu

Ferritin 22 (30 - 400) taking ferrous fumarate

Folate 2.3 (2.5 - 19.5) taking folic acid

Vit B12 247 (190 - 900) taking B12 injections

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I would suggest you add these to your original post, and add somethign like 'advice needed on vitamins' to the title of your post. I think it's SlowDragon and greygoose who are particularly hot on this, so have tagged them so they'll hopefully see your post :)

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It's SeasideSusie who gives great info re vits etc so have tagged her. I've managed to find a previous reply of hers and am pasting some of it here:

"For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

If you are prescribed iron tablets, then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption."

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Here is the rest of what she replied to someone else, but please bear in mind this was a reply to a particular person's post, but it will give you some info to go on for the moment:

Folate 3.1 (4.6 - 18.7) Vitamin B12 177 (180 - 900)

You are both folate and B12 deficient. Check for signs of B12 deficiency here b12deficiency.info/signs-an... then go and post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc (click FOLLOW then you can make your post). Quote your folate/B12/ferritin and iron deficiency anaemia information if you already have that. Also quote any signs of B12 deficiency you may be experiencing from that list.

You probably need intrinsic factor antibodies testing, you may have Pernicious Anaemia and you may need B12 injections. You definitely need folic acid prescribing but you should not start that until further investigations have been carried out and B12 started.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

Vitamin D total 26.6 (25 - 50 deficient)

You are 1.6 away from severe deficiency. You need loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 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 maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU 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 regims 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)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, 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 City Assays vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and 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.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and 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

naturalnews.com/046401_magn...

Check out the other cofactors too.

As you have Hashi's, when you buy your own supplement then for better absorption an oral spray is best as it bypasses the stomach. BetterYou do an oral spray which is readily available.

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Here is the link to the post I copied this from, so you can have a look yourself and check out the links she mentions: healthunlocked.com/thyroidu...

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What does your doctor say?

You very clearly have autoimmune hypothyroidism (Hashimoto's disease). Your thyroid gland will eventually pack in completely. Your fT3 and fT4 are both low and this would explain your substantial symptoms. The TSH rises in response to the low fT3, fT4 in an attempt to stimulate your thyroid to produce more hormone. It is usual for the TSH to go pretty high but yours is very high.

Your doctor should prescribe levothyroxine, so go along with these results and there should be no problem getting a prescription. If you are in the UK you will be entitled to free prescriptions, so ask your doctor for the form to fill in. A usual starting dose is 50 to 100 mcg levothyroxine, although if you are elderly or have a heart condition you may be started on a lower dose. Your doctor should do a blood test in about a month to see how you are going, although they tend to wait about six weeks the latest guidance is to retest after four weeks the first time. It will take many months to get better, so if you work let your boss know as it will be affecting your work. You should start to feel better after about a week but expect it to take about six months before you are fully better.

Although your thyroid hormone levels are low and TSH very high I have noticed that patients in your situation tend to do better than those who have symptoms with just moderately low hormone levels. So that's possibly good news. You shouldn't worry but your doctor should prescribe some levothyroxine straight away, don't take no for an answer.

I'm a patient not a doctor.

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I take 200mcg and endo asked me if I've been taking it

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Just saw your comment about taking 200 mcg levothyroxine. Your fT4 shouldn't be this low on that dose. Are you forgetting to take it sometimes? Also, avoid taking levothyroxine with other drugs or coffee and preferably an hour after a meal. Maybe switch to taking it at night if that's easier. You definitely need an increase in dose and unless you are large your doctor should check out if there's any reason you might not be absorbing the levothyroxine.

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No not forgetting to take it

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I avoid taking it with tea and coffee and food so what am I doing wrong please?

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For maximum absorption, levo should be taken on an empty stomach, one hour before or two hours after eating or drinking anything other than water; at least two hours away from other medication or supplements; four hour away from iron, calcium, vit D or oestrogen, and, for the best results, six hours away from magnesium.

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Not taking it with tea or coffee, I think.

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Sorry, misread!

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Maybe doing nothing wrong, absorption varies between individuals. You may just need a dose increase. I assume you are not taking any medications or supplements at the same time. Your doctor should be monitoring you and getting your thyroid hormone levels up.

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Yo also need optimal vitamins and minerals to be able to make use of the levo you are taking, which you don't have You may have a problem with absorption - have you been tested for gut problems like coeliac

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Your vitamins are far too low so need improving as per SeasideSusie excellent vitamin supplement advice

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

So getting vitamins Better, strictly gluten free diet will both help

Have you recently had change in brand of Levo?

Eg to TEVA ?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Taking Levo with vitamin C can help too - your endo should have suggested this

academic.oup.com/jcem/artic...

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