Newbie: Do I need dose increase taking 50mcg levo... - Thyroid UK

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Samantta profile image
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Do I need dose increase taking 50mcg levo diagnosed 2011 thank you

TSH 21.8 (0.2 - 4.2)

FT4 10.6 (12 - 22)

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Samantta
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Clutter profile image
Clutter

Welcome to the forum, Samantta.

Yes, you are very undermedicated to have such high TSH and FT4 below range while taking Levothyroxine. Ask your GP to increase dose to 75mcg immediately. You should have follow up thyroid tests and dose increases until TSH is around 1.0.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

SeasideSusie profile image
SeasideSusieRemembering

Samantta

As Clutter says, you are undermedicated.

We see a lot of posts like yours and usually there is more to it than just being undermedicated. Can you fill us in with some background information.

Have you always been on 50mcg Levo since diagnosis? Or have you had dose changes? If so what was the reason for the changes?

Have you had thyroid antibodies tested? Were they high? Do you have Hashimoto's?

Have you had vitamins and minerals tested? What were the results? Are you supplementing? If so with what and the dose?

Samantta profile image
Samantta in reply to SeasideSusie

Thanks I have only ever been no levo or 25mcg levo or 50mcg levo and no reasons given

Ferritin 13 (15 - 150)

Folate 3.7 (4.6 - 18.7)

Vitamin B12 192 (190 - 900)

Vitamin D 18.3

No supplements

TPO antibodies 584 (<34)

TG antibodies >1000 (<115)

SeasideSusie profile image
SeasideSusieRemembering in reply to Samantta

Samantta

You have a complete idiot for a doctor. He hasn't a clue how to treat hypothyroidism. Once Levo has been prescribed, retesting and increasing dose by 25mcg should be carried out every 6-8 weeks until you feel well and symptoms abate. Annual tests should then be carried out and any dose adjustments made according to results and how you feel.

However, you have some major problems here and I think your GP has been very negligent and is worthy of a formal complaint against him. You will be well advised never to see this GP again, see a different one in the practice or if necessary change to another practice.

**

TPO antibodies 584 (<34)

TG antibodies >1000 (<115)

Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. 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 and that is very obvious with your results.

Ferritin 13 (15 - 150)

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...

Low ferritin is suggestive of iron deficiency anaemia. You need an iron panel and full blood count, and if confirmed then the treatment is Ferrous Fumarate 2 or 3 times 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 3.7 (4.6 - 18.7) Vitamin B12 192 (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 should post on the Pernicious Anaemia Societ forum for further advice healthunlocked.com/pasoc quoting your Folate/B12/Ferritin results, iron deficiency information if you already have that, and signs of B12 deficiency you may be experiencing.

You probably need intrinsic factor antibodies testing, you may have Pernicious Anaemia, you may need B12 injections - make sure all that is done before taking any prescribed folic acid for the folate deficiency.

**

Vitamin D 18.3

You have severe Vit D deficiency and need loading doses of D3 presribed (do not leave the surgery with a prescription for 800iu D3, it must be the 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.

When it comes to the time to buy your own D3 supplement, as you have Hashi's you will be best using an oral spray for better absorption, eg BetterYou.

**

Because of your malabsorption, this needs addressing, please check out SlowDragon 's reply to this post which has links and information to help healthunlocked.com/thyroidu...

**

On top of this you need an immediate increase in your dose of Levo - 25mcg now and retest in 6 weeks, another 25mcg increase then retest 6 weeks later, repeat the retesting/increasing every 6 weeks until your TSH is at the low end of it's range and the free Ts at the upper end of their ranges, and you feel well.

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.

**

So make an urgent appointment with a GP, preferably not the one who has ignored these results. Once you have your increase in Levo and supplements prescribed for your deficiencies, plus tests for PA organised, then I suggest that you seriously consider making a formal complaint against the idiot that has ignored all these results, and I hope they throw the book at him because he shouldn't be in charge of people's health.

Spareribs profile image
Spareribs in reply to Samantta

Did the GP advise you that your levels are low & antibodies high?

Please go back & ask the GP for an increase in Levo & essential supplements - related to Thyroid problems & if he won't you must supplement yourself. (Details above). Thyroid hormone cannot work without essential nutrients/minerals.

shaws profile image
shawsAdministrator in reply to Samantta

You have a doctor who is another who joins the ever lengthening list of doctors who have no knowledge of how to treat patients who have hypothyroidism. Instead the patients may well develop other more serious illnesses. So we have to read, learn and ask questions to get back to a symptom-free life.

SlowDragon profile image
SlowDragonAdministrator

Agree with absolutely everything SeasideSusie says.

Essential to get vitamins improved and slowly in 25mcg steps increase Levo. Testing 6-8 weeks after each dose increase

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

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

Print this list of symptoms off, tick all that apply and take to different GP

thyroiduk.org/tuk/about_the...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

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

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.

Strictly gluten free diet is very likely to help, but only in conjunction with correct dose of Levo and good vitamins

Many GP's have little idea, but your is particularly negligent and ignorant

Quite frankly I am astonished your functioning at all.

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

christa1 profile image
christa1

Samantha,

you got a lot of helpfull advice here and it will be hard for you to wrapp you "head" around it all.

don't be shellshocked, just paste and print it out for yourself,. to read it it over and over again, leaving a day in between the reading over.

do baby steps

ask you GP for help , to understand the low vitamins and the hashimotos.

who knows, he might turn out to be a good GP after all.

xxx christa

silverfox7 profile image
silverfox7

Also advisable when you start supplements to take one for two weeks then add another in and so on. That way if something does t agree with you you can tell which one it is. Also if you are buying them yourself it spreads the cost a little.

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