Thyroid UK
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Hi I was diagnosed hypothyroid 2011 and since then I have been put on 50mcg Levothyroxine. Shouldn't I have felt better by now?

Symptoms - cold feet, constipation, joint pain, dry skin and eyes, tiredness, dizziness, tinnitus, unsteadiness on feet, weight gain, swelling in neck, insomnia, dark circles under eyes. Thank you

TSH 6.50 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

Anti thyroglobulin antibodies 990.5 (<115)

Anti thyroid peroxidase antibodies 68.3 (<34)

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Welcome to our forum and the reason you still feel awful is that your are undermedicated. Your dose is a starting dose and should have been increased every six weeks by 25mcg until your TSH was 1 or lower. Your Free T4 and Free T3 (rarely tested) should be in the upper part of the range. Both are at the bottom.

You have an Autoimmune Thyroid Disease called Hashimoto's, the commonest form of hypothyroidism. It is the antibodies that attack the thyroid gland, and wax and wane. Sometimes you feel hyper when they attack the gland. To reduce the antibodies, going gluten-free can help.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards.

Ask GP to also test B12, Vit D, iron, ferritin and folate as deficiences also cause symptoms.

Get a print-out of the results with the ranges and post for comments.

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

We have to read, learn and ask questions in order to recover our health, which is possible and you have already suffered six years too long.

There's a way forward to good health and slow and steady is best. Your TSH is above the top of your range.

Request a 25mcg increase and get blood tests every six weeks with an increase. You can post your results with the ranges.

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Sonaya

Have you always been on 50mcg since diagnosis or have you had dose changes along the way?

You are currently undermedicated as Shaws has said, and need an immediate dose increase.

As you have Hashi's this needs addressing. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned. 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_...

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Post vitamin and mineral results when you have them and suggestions can be made for low levels or deficiencies. Mention if you are supplementing, for how long and at what dose.

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Thanks have always been on 50mcg

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Sonaya

You need to see a different GP. 50mcg is a starter dose and retesting should be carried out 6 weeks after diagnosis and original prescription for Levo, then an increase of 25mcg. Retesting/increasing by 25mcg should then be done every 6 weeks until you feel well and symptoms abate. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo - 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. However, I don't know if this is in the current edition as it has been reprinted a few times.

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 dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor in support of your request for an increase in dose.

So make an appointment with another GP to discuss your latest test results, point out that your TSH is over range, your free Ts are very low in range, and you want an increase of 25mcg and retesting in 6 weeks.

**

When booking thyroid tests, always book the very first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

**

You also need vitamins and minerals tested, as mentioned, because it's very likely that the Hashi's has caused them to be depleted. Thyroid hormone can't work until nutrient levels are optimal.

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Ferritin 14 (15 - 150)

Folate 2.1 (4.6 - 18.7)

Vitamin B12 197 (190 - 900)

Vitamin D 25 OH 30.5

(<25 severe

25 - 50 deficient

50 - 75 suboptimal

>75 adequate)

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Sonaya

Here we have the reason for some of your symptoms.

Has your doctor prescribed anythng or any further tests regarding your low B12?

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Thanks nothing has been prescibed except ferrous fumarate 210mg to take 3 times a day for anaemia

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Sonaya

Your GP has been extremely negligent ignoring these dire results. If this is the same GP who has kept you on 50mcg Levo for 6 years with very hypothyroid test results, you should seriously consider making a formal complaint for negligence.

Ferritin 14 (15 - 150)

ferrous fumarate 210mg to take 3 times a day for anaemia

Well, your iron deficiency anaemia is being treated correctly, although you should 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.

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. If this is your latest result then you should really have an iron infusion which will raise your level within 24-48 hours, tablets will take many months.

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...

**

Folate 2.1 (4.6 - 18.7) Vitamin B12 197 (190 - 900)

You are folate deficient with very low B12. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an...

You need to post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting your folate/b12/ferritin results, your iron deficiency information and any signs of B12 deficiency you may be experiencing.

You probably need intrinsic factor antibodies testing, you may have Pernicious Anaemia and you may need B12 injections. You certainly need folic acid prescribing for the folate deficiency but don't start taking it until further testing has been carried out and B12 should be started before folic acid. The PA forum should be able to give you further guidance.

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."

**

Vitamin D 25 OH 30.5

You are 0.5 away from needing loading doses of D3 so I would ask your GP for them.

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/

As you are 0.5 over the level where loading doses are normally prescribed, if your GP wont prescribe them and only prescribes 800iu D3 daily, come back and we can tell you what to buy, what dosage to take, etc.

As you have Hashi's, when you buy your own it's recommended to use an oral spray for better absorption, eg 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.

**

It seems as though your Hashi's has caused malabsorption so that needs to be addressed so that the supplements can be absorbed, then once your nutrient levels are optimal then thyroid hormone has a chance of working. See SlowDragon's reply to this post for information and links to help healthunlocked.com/thyroidu...

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