Thyroid UK
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Sympathetic endo in Bristol

Hi newbie here, looking for a sympathetic endo in Bristol since my current one stopped my T3 despite it helping. Diagnosed hypothyroid in 2014 and taking 100mcg levothyroxine. Hypothyroid symptoms now returning.

Thank you in advance.

Oct 2017

TSH 6.2 (0.2 - 4.2)

Free T4 13.1 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

T3 stopped due to suppressed TSH and results before T3 stopped

Nov 2015

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.8 (3.1 - 6.8)

Taking 100mcg levothyroxine and 10mcg T3 at the time

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Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

Can you post recent results from when on T3 and members can advise

Did endo stop T3 due to cost (against guidelines) or because TSH was suppressed, because it almost always is on T3

Do you ahave high thyroid antibodies? You need to know. Did GP or Endo ever test these?

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

Stopping T3 has similar effect and frequently leads to really really low vitamins

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Gluten intolerance is very common, you don't need any gut symptoms

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

Are you on gluten free diet already? If not then changing to this you may find it helps 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...

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Thyroid results on 100mcg levothyroxine added, also TPO antibodies of >1500 (<34) and TG antibodies of 307.5 (<115)

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T3 stopped due to suppressed TSH and results before T3 stopped

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.8 (3.1 - 6.8)

Taking 100mcg levothyroxine and 10mcg T3 at the time

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Thanks not gluten free because being checked for coeliac disease

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Also

Ferritin 18 (30 - 400)

Folate 2.36 (2.50 - 19.50)

Vitamin B12 242 (190 - 900)

Vitamin D total 28.8

(<25 severe vitamin D deficiency

25 - 50 vitamin D deficiency

50 - 75 vitamin D may be suboptimal

>75 adequate)

Taking 5mg folic acid once a day, 210mg ferrous fumarate once a day and 800iu D3 once a day

Thanks

Reply

So were these vitamin results from when on T3 or after stopped?

They are all too low and supplements are too little to do anything to help

I will add link to SeasideSusie vitamin advice

healthunlocked.com/thyroidu...

You will see, reading on here regularly that your case is not unusual at all

Endo's don't seem to understand. We have to address poor gut function first with Hashimoto's

We can not take T3 without improving vitamin levels and in most cases going strictly gluten free too. (Regardless of coeliac test results)

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Vitamins after T3 was stopped thanks

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Klo9

Ferritin 18 (30 - 400) 210mg ferrous fumarate once a day

How long have you been taking the ferrous fumarate? If for some time you need to ask your GP why your ferritin level isn't yet back in range.

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 also 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...

*

Have you had an iron panel and full blood count done? Those are essential with such a low ferritin level to see if you have iron deficiency anaemia. If that has been confirmed then the treatment is 2 or 3 x ferrous fumatate daily.

Take each iron tablet 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.

**

Folate 2.36 (2.50 - 19.50) Taking 5mg folic acid once a day

Vitamin B12 242 (190 - 900)

Were you checked for signs of B12 deficiency - you can check that here b12deficiency.info/signs-an... Be aware that taking folic acid can mask signs of B12 deficiency so you may need to think back to before you started it.

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."

You should probably be tested for Pernicious Anaemia, you may need B12 injections.

I would post on the Pernicious Anaemia Society forum for further advice as I think you would need to be off the folic acid to be tested for PA healthunlocked.com/pasoc quoting your Folate and B12 levels, any signs of B12 deficiency you may have or are currently experiencing, plus your ferritin level and iron deficiency anaemia information if this has been confirmed.

As your B12 level is so low I wouldn't be comfortable suggesting that you self supplement.

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 28.8 800iu D3 once a day

Well, 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level. 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 as 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/

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.

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