Running around in circles - Help Needed - Thyroid UK

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Running around in circles - Help Needed

Poppycat14 profile image
7 Replies

Like so many of us I have given up trying to get the right treatment for my under active thyroid through the NHS and resorted to getting a private blood test down. My results came back as follows:-

TSH: 0.57 (0.27-4.20)

Free Thyroxine: 23.600 (12.00-22.00)

Free T3: 4.36 (3.10-6.80)

Thyroglobulin Antibody: 126.000 (0.00-115.00)

Thyroid Peroxide Antibodies: 69.8 (0.00-34.00)

Active B12: 61.300 (25.10-165.00)

Folate: 11.4 (2.91-50.00)

Vit D: 107 (50.00-200.00)

CRP: 2.24 (0.00-5.00)

Ferritin: 85.6 (13.00-150.00)

It would appear I could have autoimmune thyroid disease, in particular Hashimoto's disease.

I currently take 150mcg of levothyroxine and a Vitamin D with K2 & Magnesium supplement. Can anyone advise me whether I could try T3 or NDT (apologies as I don't fully understand the difference). If anyone thinks it may help could I ask you to Message me with details on where I can buy it and the dosage. Many thanks in advance.”

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7 Replies
HughH profile image
HughH

Are you still having hypothyroid symptoms with your current thyroid medication?

Many people on this forum have had no other choice than to self medicate, but it is not possible for someone to just tell you what and how much to take. You need to build up a knowledge first before considering this option.

SeasideSusie profile image
SeasideSusieRemembering

Poppycat14

TSH: 0.57 (0.27-4.20)

Free Thyroxine: 23.600 (12.00-22.00)

Free T3: 4.36 (3.10-6.80)

Over range FT4 with low in range FT3 and a TSH below 1 shows that you are a poor converter of T4 to T3.

Thyroglobulin Antibody: 126.000 (0.00-115.00)

Thyroid Peroxide Antibodies: 69.8 (0.00-34.00)

Your raised antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's, as you say, which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Are you addressing the Hashi's with a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies?

Optimal levels of vitamins and minerals are needed for thyroid hormone to work properly and good conversion to take place. You have some problems here:

Active B12: 61.300 (25.10-165.00)

Active B12 below 70 suggests the need to test for B12 deficiency according to viapath.co.uk/our-tests/act... which says:

Reference range: >70*; * between 25-70 referred for MMA - Methylmalonic Acid.

High levels of methylmalonic acid may indicate a vitamin B-12 deficiency.

Folate: 11.4 (2.91-50.00)

This is on the low side. Folate is recommended to be at least half way through it's range. You can raise folate by taking a good B Complex containing 400mcg methylfolate such as Thorne Basic B or Igennus Super B. However, taking folate/folic acid before further investigations into B12 can mask signs of B12 deficiency so you should delay starting a B Complex until any further tests for B12 have been carried out and any supplementation needed has started.

Vit D: 107 (50.00-200.00)

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L so your level is just about fine and you should continue with a maintenance dose of D3 and it's co-factors.

CRP: 2.24 (0.00-5.00)

Ferritin: 85.6 (13.00-150.00)

These are fine.

Before considering T3 (or NDT, which is Natural Desiccated Thyroid made from pigs' thyroid and is T4 and T3) then it's important to optimise you nutrient levels (so you need to look at the B12 and Folate) and address the Hashi's as mentioned.

Poppycat14 profile image
Poppycat14 in reply toSeasideSusie

Thank you very much for the advice. I will do what you suggest and hopefully feel an improvement.

silverfox7 profile image
silverfox7

I righted my conversion through taking supplements but be aware it's not an instant fix. It takes time to improve the levels. We find as well that we need to continue with the supplements as levels can drop quickly when we stop.

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect 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)

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

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

So before considering adding small dose of T3 trying strictly gluten free diet and getting vitamins optimal

B12 and folate look on low side. A daily good quality vitamin B complex with folate in may be of benefit

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Retesting full Thyroid and vitamin levels in 2-3 months

If FT3 remains low then look at adding small dose T3

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne


tukadmin@thyroiduk.org

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

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

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

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. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Poppycat14 profile image
Poppycat14 in reply toSlowDragon

Thank you for your reply. It definitely looks like I need to increase my vitamin levels and look into going Gluten free. Had no idea about the timings of taking over medication - I wonder why are we not told this when we get prescribed 🤔

SlowDragon profile image
SlowDragonAdministrator in reply toPoppycat14

Because GP is unlikely to have any idea

Suggest you read this too

beta.nhs.uk/medicines/levot...

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