Advice on results please for a new member - Thyroid UK

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Advice on results please for a new member

Jenjay085
Jenjay085

TSH 0.12 mIU/L (0.27 - 4.20)

Free thyroxine 22 pmol/L (12 - 22)

Free T3 4.0 pmol/L (3.1 - 6.8)

Anti thyroid peroxidase antibodies 539 IU/mL (0 - 34)

Anti thyroglobulin antibodies 771.5 IU/mL (0 - 115)

Hi everyone I am looking for some advice. I am a 32 year old female and I am taking 100mcg levo for hypothyroidism found in 2012. My Levo was lowered in August 2018 after my TSH was 0.07 and Free T4 20.1 (12 - 22) Free T3 4.2 (3.1 - 6.8)

I have been on as much as 200mcg levo and that was back in Jan 2017.

So my symptoms are a bit odd really. I have been getting occurrences of very high blood pressure, periods heavy and painful, pins and needles in feet and legs, dry skin and thinning hair, muscle pain and weakness, dizziness, feeling low and irritable, tiredness and feeling cold. Any advice welcome!

Thank you

26 Replies
oldestnewest

Have you had the following nutrients levels tested yet, if not ask your GP to test :

Vitamin D

B12

Folate

and Ferritin.

You may have dome deficiencies and need prescribed supplements.

Have you ever asked for a trial of a small amount of T3 in addition to your Levothyroxine?

Thank you, my endo says T3 would benefit me and I am to look for a seller. I take vit D folic acid iron and B12 injections and I have results of them

You shouldn't need to look for a "seller " - Endo should prescribe and write to GP instructing to prescribe.

SlowDragon
SlowDragonAdministrator

Your FT3 is too low. You likely have low vitamin levels, and or gluten may be a problem

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Ask GP to test vitamins, if not been done. Always get actual results and ranges

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If 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. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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, sometimes 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. You don't need any gut symptoms to benefit.

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...

Thank you, I have

Anti thyroid peroxidase antibodies 539 IU/mL (0 - 34)

Anti thyroglobulin antibodies 771.5 IU/mL (0 - 115)

Told this is not Hashimotos

SeasideSusie
SeasideSusieAdministrator
in reply to Jenjay085

Jenjay085

If whoever told you this is not Hashimoto's is a doctor, they would be better off finding a different career. This is most definitely Hashi's.

SlowDragon
SlowDragonAdministrator
in reply to Jenjay085

This is definitely Hashimoto's. Ask for coeliac blood test before trying strictly gluten free diet for 3-6 months. If it helps stick with it. Retesting antibodies ideally.

If no noticeable improvement in symptoms or antibodies then reintroduce gluten and see if symptoms get worse

If your NHS endocrinologist says you have clinical need you should be prescribed T3. Not just told to buy over the internet. At a minimum they should provide a private prescription for 100 x 20mcg Liothyronine

BUT vitamins must be optimal FIRST and most of us with Hashimoto's need to be strictly gluten free FIRST too

New NHS England Liothyronine guidelines November

sps.nhs.uk/wp-content/uploa...

Thank you, my endo says he can't prescribe it T3 as I am not a private patient. He advised me to get T3 from Germany but I didn't know how to find a seller from there and the endo told me to search on Google. Maybe worth ditching him?

My gp increased my vit D to 1600 last week after I went to her about bone pain in my legs. I have been taking 800iu for 5 years.

Vitamin D 45 nmol/L (25 - 50 deficiency)

Folate I have been taking for 2 years. (5mg)

Folate 6.2 ug/L (2.5 - 19.5)

Vitamin B12 I have taken 14 shots after this result.

B12 998.3 pg/L (190 - 900)

Ferritin was sorted in July 2018 with IV iron.

Ferritin 110.5 ug/L (30 - 400)

Vit D test done Nov this year, others done in Aug this year

Your Vitamin D result shows you were still deficicent.

Are you in UK? Your Endocrinologist can prescribe T3 on NHS. Opinion seems to vary from NHS Endo to NHS Endo.

I actually had a conversation with the Pharmacist in a Boots branch this week about my preferred LT4 brand and he explained difgiculties guaranteeing it - also told me he was having difficulty getting scored T3 tablets for a patient who is on one-and-a-half tablets. So, I believe that confirms that patients are getting T3 on NHS, however not without complications depending on dose.

my endo says T3 would benefit me and I am to look for a seller. I take vit D folic acid iron and B12 injections and I have results of them

SeasideSusie
SeasideSusieAdministrator
in reply to Jenjay085

Jenjay085

Please post your results, including reference ranges, and the doses of supplements you are taking. Levels need to be optimal for thyroid hormone to work.

If your endo says you would benefit from T3 then he should be prescribing it. If your CCG won't allow prescriptions for new patients then he could write you a private prescription and then you could obtain it very cheaply from Germany if your prescription is written correctly.

Do I post my results on this page please?

Thank you, my endo says he can't prescribe it T3 as I am not a private patient. He advised me to get T3 from Germany but I didn't know how to find a seller from there and the endo told me to search on Google.

My gp increased my vit D to 1600 last week after I went to her about bone pain in my legs. I have been taking 800iu for 5 years.

Vitamin D 45 nmol/L (25 - 50 deficiency)

Folate I have been taking for 2 years. (5mg)

Folate 6.2 ug/L (2.5 - 19.5)

Vitamin B12 I have taken 14 shots after this result.

B12 998.3 pg/L (190 - 900)

Ferritin was sorted in July 2018 with IV iron.

Ferritin 110.5 ug/L (30 - 400)

Vit D test done Nov this year, others done in Aug this year

Jenjay085
Jenjay085
in reply to Jenjay085

Gp said my vit D in Aug was very good. 92 nmol/L which was the highest it has ever been, then in Nov it just rapidly dropped. She told me the cause of it is from the lack of sunlight.

SeasideSusie
SeasideSusieAdministrator
in reply to Jenjay085

Jenjay085

SlowDragon has covered the T3 prescription issue.

My gp increased my vit D to 1600 last week after I went to her about bone pain in my legs. I have been taking 800iu for 5 years

I don't know what your level was when you were originally prescribed 800iu D3 daily, but it is totally inadequate for raising a low level, it's barely a maintenance level for someone who already has a decent level. I expect your GP is sticking to local guidelines but to prescribe for 5 years and not see any real improvement, or see an improvement then a deterioration and not address it, one has to question where their common sense is.

Gp said my vit D in Aug was very good. 92 nmol/L which was the highest it has ever been, then in Nov it just rapidly dropped. She told me the cause of it is from the lack of sunlight.

Were you still taking your Vit D? Not everyone makes Vit D from the sun, but once we are in the winter months we draw on our store of Vit D we have made during the summer months so unless we supplement at an adequate dose then our store will deplete and our level will fall. Most people who are taking supplements need more in winter than summer.

Vitamin D 45 nmol/L (25 - 50 deficiency)

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level between 100-150nmol/L. With your current level of 45nmol/L, to reach the recommended level of 125nmol/L, the Vit D Council recommends taking 4,900iu daily (it would have to be 5,000 or 6,000iu)

vitamindcouncil.org/i-teste...

Scroll down to

My level is between 10-20 ng/ml - your level of 45nmol/L = 18ng/ml

and it says

To achieve this level ...... Take this much supplement per day

40 ng/ml ...... 3200 IU

50 ng/ml ...... 4900 IU

60 ng/ml ...... 7000 IU

As you have Hashi's then for best absorption an oral spray is recommended, eg BetterYou or you could look for a sublingual liquid. You can get combination D3/K2 or separte ones.

You should take 5000-6000iu for 3 months then retest and when you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 as recommended by the Vit D Council -

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 such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium 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 if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

Folate 6.2 ug/L (2.5 - 19.5)

To have been taking folic acid for 2 years and still have such a low level (it should be at least half way through range) probably means poor absorption, which all of your other low levels indicate too, which SlowDragon has already touched upon.

Ferritin 110.5 ug/L (30 - 400)

You need to keep an eye on this, the infusion increases levels but it will fall again unless you find a way of maintaining it. You can help do that by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in... or you may need a maintenance dose of iron tablets. Thyroid hormone can't work properly if ferritin falls below 70.

Are your B12 injections going to continue at regular intervals?

Thank you, my level of vit D 43.2 when initially diagnosed. I have been taking the vit D since then. I am taking B12 every 3 months

SeasideSusie
SeasideSusieAdministrator
in reply to Jenjay085

So with a level of 43.2 you didn't qualify for loading doses and your GP followed the guidelines but 800iu is nowhere near enough as already illustrated.

SlowDragon
SlowDragonAdministrator
in reply to Jenjay085

Your vitamins are dire

Your GP or endocrinologist should have referred you for full investigation for coeliac

Highly likely you are gluten intolerant

Vitamin D dose of 1600iu is unlikely enough

Aiming to improve to at least 80nmol and around 100nmol may be better .

Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 3000iu for 2-3 months and retest. It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin

drsinatra.com/vitamin-k2-su...

Vitamin C and bones

healthimpactnews.com/2018/d...

Inform your endocrinologist that you have taken advice from NHS recommended Thyroid support group. That it is impossible to buy T3 from Germany WITHOUT a prescription

Endo can apply for individual funding request on your behalf for NHS prescription for T3

An initial 3 month trial of NHS prescribed T3 via Endocrinologist is next step. Then, assuming trial is successful, ongoing care, prescribing and cost is handed to GP.

Which CCG area are you in?

Write to your MP, Lord O'Shaughnessy and Lord Hunt of Kings Heath

theyworkforyou.com/search/?...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Thank you, I am in Bristol and attend Weston general hospital for endo appointments.

SlowDragon
SlowDragonAdministrator
in reply to Jenjay085

Here's link to other posts mentioning Bristol

Might find a useful bit of info

healthunlocked.com/search/p...

Somerset CCG prides itself on being one of the lowest number of T3 prescriptions and refusing to prescribe T3..... so you have a fight on your hands

Gp checks my vit D every 6 months so they actively monitor me. Iron folate and B12 monitored every 3 months

SlowDragon
SlowDragonAdministrator
in reply to Jenjay085

Folate - presumably you are prescribed folic acid ?

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial. B vitamins best taken in the morning after breakfast

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...

Yes I take folic acid. I don't take any B complex or anything with biotin. Thanks

SlowDragon
SlowDragonAdministrator
in reply to Jenjay085

Then you might find taking a good quality daily vitamin B complex , one with folate in not folic acid is better

Eg Igennus Super B or Jarrow B right

Folic acid is not as good as folate for some people

chriskresser.com/folate-vs-...

SlowDragon
SlowDragonAdministrator
in reply to Jenjay085

They should be asking themselves WHY levels keep dropping

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