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katriona1 profile image
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Hi I am 31 yrs old and taking 50mcg levo. I am also positive for thyroid antibodies. Symptoms are feeling cold, tiredness, swelling in neck, constantly clearing throat, constipation, pins and needles, dry skin, tinnitus, fatigue, joint pain, eyelash loss, memory loss, muscle weakness. Diagnosed 2011. Thanks

TSH 10.6 (0.2 - 4.2 MIU/L)

FREE T4 13.2 (12 - 22 PMOL/L)

FREE T3 3.3 (3.1 - 6.8 PMOL/L)

TPO ANTIBODY 376 (<34 IU/ML)

TG ANTIBODY 288.3 (<115 IU/ML)

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SeasideSusie profile image
SeasideSusieRemembering

katriona1 What has your GP said about these results?

Have you had dose changes? If so what was the reason? Can you post results and dose info for when these changes happened.

Have you had vitamins and minerals tested? If so please post results, with reference ranges, say if supplementing, with what and the dose:

Vit D

B12

Folate

Ferritin

Iron panel

Full blood count

katriona1 profile image
katriona1 in reply to SeasideSusie

Thanks for reply, my endo wants me to increase to 75mcg but I was happiest on 200mcg levo and 25mcg T3. This has since been taken away.

AUG 2017 (8 weeks on150mcg levo from 200mcg levo and 25mcg T3)

TSH 0.03 (0.2 - 4.2)

FREE T4 21.1 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

JUN 2017 (200mcg levo and 25mcg T3)

TSH <0.02 (0.2 - 4.2)

FREE T4 22.7 (12 - 22)

FREE T3 4.6 (3.1 - 6.8)

SeasideSusie profile image
SeasideSusieRemembering in reply to katriona1

Katriona - we are seeing posts like yours virtually every day, and it seems as though doctors and endos really don't know what they're doing.

At what point were you reduced to 50mcg Levo? What dose were you on at the time, what were the results that prompted the reduction.

Now you're on 50mcg Levo, the most sensible thing is to increase in 25mcg increments, but you should never have been reduced to that amount in the first place.

If you can post more information and results in their correct order we can see what your endo was trying to do.

katriona1 profile image
katriona1 in reply to SeasideSusie

Reduced dose in August 2017 to 50mcg levo, will post other results later

katriona1 profile image
katriona1 in reply to SeasideSusie

JAN 2017 (125mcg levo and 12.5mcg T3)

TSH 1.66 (0.2 – 4.2)

FREE T4 15.5 (12 – 22)

FREE T3 4.4 (3.1 – 6.8)

NOV 2016 (125mcg levo and 12.5mcg T3)

TSH 3.80 (0.2 – 4.2)

FREE T4 17.2 (12 – 22)

FREE T3 4.7 (3.1 – 6.8)

SEP 2016 (100mcg levo and 12.5mcg T3)

TSH 3.63 (0.2 – 4.2)

FREE T4 18.7 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

MAY 2016 (75mcg levo and 12.5mcg T3)

TSH 6.10 (0.2 – 4.2)

FREE T4 13.3 (12 – 22)

FREE T3 4.5 (3.1 – 6.8)

FEB 2016 (75mcg levo and 12.5mcg T3)

TSH 7.45 (0.2 – 4.2)

FREE T4 12.9 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

DEC 2015 (100mcg levo and 12.5mcg T3)

TSH 0.07 (0.2 – 4.2)

FREE T4 22.1 (12 – 22)

FREE T3 4.5 (3.1 – 6.8)

SEP 2015 (100mcg levo and 12.5mcg T3)

TSH <0.02 (0.2 – 4.2)

FREE T4 20.3 (12 – 22)

FREE T3 5.1 (3.1 – 6.8)

JUL 2015 (175mcg levo)

TSH 1.24 (0.2 – 4.2)

FREE T4 19.3 (12 – 22)

FREE T3 4.0 (3.1 – 6.8)

SeasideSusie profile image
SeasideSusieRemembering in reply to katriona1

DEC 2015 (100mcg levo and 12.5mcg T3)

TSH 0.07 (0.2 – 4.2)

FREE T4 22.1 (12 – 22)

FREE T3 4.5 (3.1 – 6.8)

There was absolutely no reason to change your dose with those results, TSH below range but TSH is of no importance once diagnosed and on replacement hormone. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

What should have happened here is add a bit more T3 and maybe reduce the Levo a touch, but instead your Levo was just reduced and produced this result

FEB 2016 (75mcg levo and 12.5mcg T3)

TSH 7.45 (0.2 – 4.2)

FREE T4 12.9 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

which you can see sent your TSH rocketing way over range and your FT4 plummeted to the bottom of the range.

We can see increased doses of Levo from then on improved your TSH but it was T3 that should have been increased.

Reduced dose in August 2017 to 50mcg levo

AUG 2017 (8 weeks on150mcg levo from 200mcg levo and 25mcg T3)

TSH 0.03 (0.2 - 4.2)

FREE T4 21.1 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

To reduce your Levo to 50mcg after these results was total madness. What on earth was your endo thinking. Your FT4 was in range but your FT3 below range. You should have had an increase in T3.

Now with your current results you are going to need regular ltesting/increases of 25mcg until your TSH achieves 1 or below and your free Ts are back in the upper part of their ranges. If you can get your T3 back all the better, there was no need to remove it in the first place.

In support of increasing your dose, see thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

Once you add T3 into the mix, TSH is most likely going to be very low or suppressed and FT4 may be lower in the range. It's the FT3 result that is important, as long as that stays within range you can't be overmedicated.

However, you also need to address the Hashi's as SlowDragon has mentioned, in addition to a gluten free diet supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

You also need to get nutrient levels optimal so if not already done then ask for those vitamins and minerals I mentioned earlier to be tested. Optimal is not the same as 'in range' and doctors don't understand that. Post results when you have them and we can suggest supplements and doses if there are any low levels or deficiencies.

katriona1 profile image
katriona1 in reply to SeasideSusie

Will post results of these, they were done last month. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to katriona1

Was it a different endo that stopped T3, than started it ?

You have Hashimoto's, so for T3 to work well we need vitamins at very good levels and also highly likely you need to be strictly gluten free

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut. About 5% are coeliac, but over 80% of us 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.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

Your vitamin levels are very likely to be dire. We keep seeing this, patient gets T3, then has it stopped..... vitamin levels crash right out as gut function grinds to a halt

Are you not typical looking hypo? I.e. Skinny rather than over weight

Medics often seem to not recognise that thin people can be hypo

Finance and ridiculous increase in cost of T3 is behind many withdrawals

m.imgur.com/a/U42vD

dailymail.co.uk/health/arti...

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

Also join the campaign to save T3

engage.england.nhs.uk/consu...

Write to your GP too

katriona1 profile image
katriona1 in reply to SlowDragon

Yes different endo stopped it and I am slim but not skinny, I have gained weight. Thanks

katriona1 profile image
katriona1 in reply to SeasideSusie

Ferritin 48 (30 - 400)

Folate 2.2 (2.5 - 19.5)

Vitamin B12 207 (190 - 900)

Vitamin D 26.8 (25 - 50 deficient)

RBC count 4.44 (3.8 - 5.8)

WBC count 7.13 (4 - 11)

MCV 77.5 (80 - 98)

MCHC 385 (310 - 350)

MCH 28.2 (28 - 32)

Haemoglobin estimation 125 (115 - 150)

Platelet count 251 (150 - 500)

Taking 800iu vitamin D since 2013, 3x ferrous fumarate since 2013, 5mg folic acid since 2016

SeasideSusie profile image
SeasideSusieRemembering in reply to katriona1

Katriona -

Ferritin 48 (30 - 400)

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 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...

MCV 77.5 (80 - 98)

MCHC 385 (310 - 350)

These results suggest iron deficiency and as you are taking 3 x ferrous fumarate daily I imagine this has been diagnosed as that's the normal treatment for it. However, considering you've been taking that amount for 4 years one would expect your levels to be higher so I think you should discuss this with your GP and maybe further investigations should take place such as absorption issues.

**

Vitamin D 26.8 (25 - 50 deficient) 800iu vitamin D since 2013

I think you should be asking your doctor the following:

"Considering I've been supplementing with Vit D for 4 years, how come my level is still deficient?"

The answer, actually, is because you've been given the wrong treatment. 800iu daily will never in the reign of pig's pudding raise a deficient Vit D level, at best it's barely a maintenance dose for someone with a decent level to start with, and then many people need far more for a maintenance dose, personally I need 2000iu daily all year round. For Vit D deficiency you should have had 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 (not a paltry 800iu) 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/

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 and are likely to have gut/absorption problems, SlowDragon always recommends a spray Vit D rather than softgels or tablets, as it will be absorbed better as it bypasses the stomach. Better You is what she recommends, but you will need your loading doses first, recheck your level, then come back and we can advise on a dose rather than the 800iu you will be offered.

**

Folate 2.2 (2.5 - 19.5) 5mg folic acid since 2016

Vitamin B12 207 (190 - 900)

So again, you need to ask your GP why your are still folate deficient considering you are taking folic acid, particularly if you are taking it daily rather than weekly. Is it an absorption problem, or can you not convert folic acid in folate? If not then methylfolate would be better for you.

Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

You should post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc With your low B12 plus folate deficiency, you may need testing for Pernicious Anaemia and you may need B12 injections. See what they say then discuss with your GP.

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."

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