Thyroid UK
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Is dose wrong or am I going mad?

Hi, I am not really getting anywhere with my endo or GP at the moment. My endo is refusing to increase my dose of levothyroxine and he says he cannot understand my thyroid results since they are not following a set pattern. Also GP has been trying to intervene and change my dosage as well. I don't know whether I am coming or going! My periods drain me every month, feel very cold, bones ache, losing hair, joint stiffness. Feel like hitting my head against a brick wall! Is it worth getting T3 reinstated? Advice would be appreciated, I take 175mcg levothyroxine and I was diagnosed in 2013.

OCT-2017 (175mcg levothyroxine)

TSH 0.02 (0.2 - 4.2)

Free T4 25.3 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

DEC-2017 (175mcg levothyroxine)

TSH 4.70 (0.2 - 4.2)

Free T4 14.7 (12 - 22)

Free T3 3.1 (3.1 - 6.8)

10 Replies
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I'm taking a guess and I think you have raised antibodies (indicating autoimmune thyroiditis aka Hashimoto's) and that your nutrient levels are low or deficient - Vit D, B12, folate, ferritin.

Have you had all these tested?

Your December results show that you are undermedicated.

Can you tell us about your T3 - when was it prescribed (show results/ranges), who prescribed it, why was it taken away (show results/ranges when that happened), who took it away?

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Thyroid peroxidase antibody 404.5 (<34)

Thyroglobulin antibody 277.5 (<115)

T3 was prescribed in August 2015 and did very well on it. My first endo prescribed it and my second one took it away since the second one does not support its use.

When prescribed:

TSH 1.20 (0.2 - 4.2)

FT4 20.5 (12 - 22)

FT3 3.3 (3.1 - 6.8)

Ferritin 58 (30 - 400) I take 210mg ferrous fumarate once a day

Vitamin D 59.9 (50 - 75 suboptimal) I take 1000iu vit D

B12 injections once every 3 months

5mg folic acid

Thanks

Reply

Thyroid peroxidase antibody 404.5 (<34)

Thyroglobulin antibody 277.5 (<115)

There you are, confirmation of autoimmune thyroid disease - Hashimoto's. This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Unfortunately, doctors attach little or no importance to antibodies and don't understand how Hashi's affects the patient. Because you'll get no help in this respect from your GP or endo, you should read, learn and help yourself.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

T3 was prescribed in August 2015 and did very well on it. My first endo prescribed it and my second one took it away since the second one does not support its use.

What happened to the first endo? Why are you no longer seeing him? I think it's so wrong for another endo to go against what the first one has done and make the patient ill again, particularly if your results and symptoms showed that T3 was helping.

Removing your T3 will have caused problems with your nutrient levels and these need to be optimised.

Ferritin 58 (30 - 400) I take 210mg ferrous fumarate once a day

Ferritin needs to be at least 70 for thyroid hormone to work.

You should take your ferrous fumarate with 1000mg Vit C to aid absorption and help prevent constipation, and you should take it 4 hours away from thyroid meds and 2 hours away from any other medication and supplements as it affects absorption.

You can help raise ferritin by eating liver regularly, maximum 200g per week.

Did you have an iron panel and full blood count? Do you have iron deficiency anaemia?

**

Vitamin D 59.9 (50 - 75 suboptimal) I take 1000iu vit D

The Vit D Council recommends a level of 100-150nmol/L and your 1000iu daily isn't really enough, it's barely a maintance dose. You would be better taking about 5000iu daily throughout the winter months, retest in April, see where your level then lies and adjust to a maintenance dose if you've reached the recommended level.

As you have Hashi's you would be best using an oral spray such as Better You.

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.

**

B12 injections once every 3 months

5mg folic acid

Do you have your levels?

**

Hashi's generally causes gut/absorption problems and SlowDragon has links and information that will help there.

**

Your October results showed that you most definitely need your T3 reinstated, your poor conversion is very obvious, your first endo was correct to prescribe it because the results at the time showed poor conversion. You should ask for it to be reinstated.

Reply

Hi first endo left the hospital and I was assigned this endo instead. I also have iron deficiency. I don't know what folate and B12 are, I guess they are in range if I haven't heard back about them. Thanks

Reply

As you have confirmed iron deficiency anaemia, the treatment should be ferrous fumarate 2 or 3 time per day - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

You might want to discuss this with your GP and get the appropriate treatment.

Clutter has given you information about getting T3 reinstated.

Reply

Rach1718,

Either endo or GP should be in charge of your thyroid but not both. Usually the GP butts out when a specialist is involved because the specialist is supposed to know more than the GP. In any case, you can't have two people in charge of dosing because that will cause problems.

The most common reason for fluctuations in thyroid levels is altering dose to target a TSH result and/or autoimmune thyroiditis (Hashimoto's) which can cause hormone dumps when lymphocytes infiltrate the thyroid gland raising T4 and T3 levels and suppressing TSH.

TSH 0.02 was suppressed and despite FT4 being mildly over range FT3 was low in range so you were not overmedicated in October. You were undermedicated in December with TSH 4.70 (which is over range) and you can see how FT4 and FT3 levels have dropped and that's why you feel symptomatic.

Ask your endo to test thyroid peroxidase and thyroglobulin antibodies to confirm or exclude Hashimoto's.

Increasing Levothyroxine dose to 200mcg will raise FT4 and FT3. If FT4 goes over range then it would be better to reduce dose to 175mcg and add some T3.

Reply

Thyroid peroxidase antibody 404.5 (<34)

Thyroglobulin antibody 277.5 (<115)

T3 was prescribed in August 2015 and did very well on it. My first endo prescribed it and my second one took it away since the second one does not support its use.

When prescribed, was taking 175 of levo

TSH 1.20 (0.2 - 4.2)

FT4 20.5 (12 - 22)

FT3 3.3 (3.1 - 6.8)

Reply

And FT4 was over range with low FT3 some time before those results

Reply

Rach1718,

Okay, thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's).

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Show your endo the BTA Statement issued in 2016 that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

If endo won't reinstate your T3 then I think your only recourse is to get a private prescription which can be expensive or to buy online and self medicate.

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Reply

Sadly we have seen many many similar situations.

Endocrinologists should not stop T3 just because "they don't agree with it'

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

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)

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

Ask GP for coeliac blood test first

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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...

thyroidpharmacist.com/artic...

You are now very under medicated. Current endo is possibly a Diabetes specialist. Certainly seems confused by the normal swings of Hashimoto's

Going strictly gluten free will reduce the Hashimoto's swings plus a TSH as low as possible

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:


tukadmin@thyroiduk.org

Also request list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

British Thyroid Association statement on T3

british-thyroid-association...

Typical posts after T3 stopped clearly showing how gut function is affected and then low vitamin levels result

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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