Thyroid UK

Asked to reduce to 25mcg levo

I am new, was this the right thing to do? Was taking 175mcg levo

November 2017 (175mcg levo)

TSH 0.08 (0.2 - 4.2)

Free T4 22.6 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Thyroid peroxidase antibodies 998 (<34)

Thyroglobulin antibodies 375.3 (<115)

Results in December 2017 on 25mcg levo are now:

TSH 5.6 (0.2 - 4.2)

Free T4 13.7 (12 - 22)

Free T3 2.2 (3.1 - 6.8)

Symptoms are frequent urination, dry skin, goitre, dry eyes, tiredness, constipation, feeling cold. Diagnosed 2012 with hypothyroid.

Thank you

23 Replies
oldestnewest

Noooooo! Why? Who said and what was the reason?

You are not converting T4 to T3 very well, you could actually do with a slight reduction in Levo and the addition of T3. Your FT3 is far too low and T3 is the active hormone.

Did you know that your raised antibodies confirm autoimmune thyroiditis aka Hashimoto's?

3 likes
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The endo says my results show overmedication. The endo will not give me T3 despite FT3 consistently being in the lower bottom of range. I did not know I have Hashimotos.

Thanks

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Hashimoto's is where antibodies attack the thyroid and gradually destroy it. The attacks cause fluctuations in symptoms and test results. Most doctors attach little or no importance to antibodies and don't understand how Hashi's affects the patient. Best to read and learn so you can help yourself.

Adopting a strict gluten free diet and supplementing with selenium L-selenomethionine 200mcg can help reduce antibodies, as can keeping TSH suppressed

chriskresser.com/the-gluten...

Hashi's information

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

thyroiduk.org/tuk/about_the...

Hashi's and gut/absorption problems tend to go hand in hand and very often nutrient levels are low monthly deficient. You should get them tested, they need to be optimal for thyroid hormone to work

Vit D

B12

Folate

Ferritin

And if ferritin is low

Iron panel

Full blood count

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Ok I have results of these. I haven't yet noticed a difference in what I take. Thanks

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Post the results and say if you are supplementing, how long for and what dose.

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Sep 2017

Ferritin 58.3 (30 - 400) anaemia treated with iron infusion May 2016, no iron since then. Ferritin rechecked December 2017, no idea what result is

Dec 2017

Vitamin D 50.4 (50 - 75 suboptimal) taking 800iu D3 since Jan 2014

Folate 2.3 (2.5 - 19.5)

Vitamin B12 202 (180 - 900)

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so what were your vitamin D results when you were first diagnosed deficient? Folate is under range and B12 incredibly low in range. I would definitely check ferritin result. Has anyone commented on these, ie GP?

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Vitamin D when first found deficient was 40.2 (25 - 50 deficient)

GP was meant to have read them in December, nothing commented on. Endo said he would take a look, he hasn't commented either

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If you live in England, did you know you can register to get your blood test results online? You can organise it through GP surgery.

Could you get a copy of your ferritin result? It's your right to have a copy of results.

Post your B12 and folate result on Healthunlocked Pernicious Anaemia forum for their advice. They are the experts on B vitamins. You may need to rule out pernicious anaemia before supplementing or at least begin to raise B12 before starting Folic acid supplements so ask their advice about what to do.

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Yes I am in England. GP won't give me access online, they said they don't do that.

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Legally, they are supposed to have given everyone access from 2015 and are in breach of their contracts with the NHS. But regardless of that they HAVE to give your results. It's the law.

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As they have failed to comply with the regulations regarding giving you online access to blood test results, ask for a free print out of all your thyroid and vitamin blood test results.

If they quibble about it point them to these websites

NHS medical records – getting them.

nhs.uk/chq/pages/1309.aspx?...

emishealth.com/media/1537/0...

nhs.uk/NHSEngland/thenhs/re...

If necessary, write to the practice manager with the website links and ask them to arrange online access to blood test results.

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Ferritin needs to be 70 for thyroid hormone to work. Ask for your latest result. After an infusion there should be monitoring and advice on keeping level up. You can raise ferritin by eating liver regularly, maximum 200g per week.

800iu D3 will never raise levels, it's barely a maintenance dose for someone with a good level to start with. With your level of 50.4 you should take 5000iu daily for 3 months and then retest. The Vit D Council recommends a level of 100-150nmol/L. Check the important cofactors needed when taking D3 vitamindcouncil.org/about-v...

You need to check for signs of B12 Deficiency b12deficiency.info/signs-an... and if you have any then post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

You are folate deficient but should be checked for Pernicious Anaemia and B12 started before starting folic acid.

Your deficiencies will be the result of gut and absorption problems and SlowDragon has links and information to help there.

2 likes
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Welcome to the forum, Anyaj2.

It is terrible advice. It's debatable whether you are overmedicated with mildly suppressed TSH and mildly over range FT4 but if you are the correct advice would be to reduce dose by 25mcg to 150mcg.

If you are certain that your endo said reduce to 25mcg do ask for a 2nd opinion from another endo, preferably a consultant endo.

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Thanks my endo said reduce to 25mcg and Dec results now underactive. At the time of Nov bloods I had no symptoms of overmedication

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Anyaj2,

Well your consultant endo is certainly not a thyroid specialist or he would have known better than to reduce your dose so much as you are now undermedicated and FT3 is below range.

I suggest you make a formal complaint and ask for your Levothyroxine to be reinstated at 150mcg or 175mcg.

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My endo is a consultant endo as well, I forgot to add

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Just goes to show what rubbish all endos are, whatever their title. He was totally wrong on so many levels. If I were you, I would never go back to him. He knows nothing about thyroid and will make you very ill.

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I can't believe he told you to reduce to 25mcg...what kind of an Endo is he? Diabetic specialist? Changing thyroid meds by more than 12.5mcg at a time makes me feel unwell. I can't imagine jumping from 175mcg to 25mcgs. Terrible advice and why is it these Endo's have absolutely no idea how terribly ill it makes us feel to mess about with our hormone levels? As part of an Endo's training I would really like to give them something to stop their thyroid function for 3 months and then give them huge doses of levothyroxine so they can experience huge hormonal changes - because that's what they're doing to us. How would he/she like it???

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I looked him up and he is a consultant endo for diabetes and endocrinology

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Well as suspected not a thyroid specialist then. If your GP is any good then maybe stick with GP or get the list of Endo's from Thyroid UK?? Your Endo is treating you despicably...it's cruel to make someone reduce their meds to 25mcg if previous blood tests clearly confirmed hypothyroidism and you were on 175mcg levo. FT4 was only very slightly over range so a slight reduction could have been tried, say 12.5 or 25mcg. I can't believe how obtuse these Endos are!

Just for reassurance, my FT4 is often a little over range and no one panics.

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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 or buy a coeliac test online

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 must improve your vitamin levels as outlined by SeasideSusie

Your endo obviously not a thyroid specialist. You were not over medicated on 175mcg. Your FT3 was too low. Your a TSH slightly suppressed probably due to low vitamins

You need to increase dose back up, in 25mcg or possibly 50mcg steps, retesting 6-8 weeks after each dose increase.

Strictly gluten free diet helps gut heal, also look at probiotics and fermented foods like kefir

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

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

Prof Toft - article just published now saying T3 is likely essential for many

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

But vitamins must be optimal FIRST, many of us with Hashimoto's find gluten free diet essential

Getting Levo dose high enough to bring TSH down to around one and FT4 towards top of range

If FT3 still remains low then look at adding small dose of T3

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

Reply

No, it was a really stupid idea. Your Nov results were good, but showed poor conversion., Ideally you should have been offered T3 with a slight reduction in levo. Or left on that dose with no T3. Now you are very undermedicated and hypo with under range free T3, which was obviously going to happen if meds were reduced. Where are all these ignorant doctors coming from?.

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