Advice please: Hi, I have just joined. I suspect... - Thyroid UK

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Advice please

Pixxi profile image
16 Replies

Hi, I have just joined. I suspect I have a problem with my thyroid. It swells up and sticks out from the front of my neck and shrinks by itself. Ultrasound confirmed twice that it is enlarged and looks damaged. I have elevated antibodies and my symptoms are very confusing! Memory loss, brain fog, dry skin, cold hands, flaky and splitting nails, dry eyes. hair loss, constipation every day without fail, depression, increasing weight gain, low pulse, spots around corners of my mouth, ongoing infections. Am I going mad? Diagnosed 2012 with hypothyroid thanks

Thyroid peroxidase antibody 347 IU/mL (<34)

Thyroglobulin antibody 269.3 IU/mL (<115)

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Pixxi profile image
Pixxi
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16 Replies
greygoose profile image
greygoose

No, you're not going mad, you're going hypo. And, your symptoms aren't confusing at all. Symptoms of low T3 can make themselves felt anywhere and everywhere. Have you had your thyroid hormones tested : TSH, FT4, FT3?

Pixxi profile image
Pixxi in reply togreygoose

Hi yes I did back in October 2017. I was taking 50mcg Levo at the time.

TSH 5.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 2.1 (3.1 - 6.8)

greygoose profile image
greygoose in reply toPixxi

And you were under-medicated. Did you increase your dose at that point? Your FT3 is under-range, so not surprising you're having symptoms!

Pixxi profile image
Pixxi in reply togreygoose

Hi no I haven't had increase. I was hoping the endo would suggest it

greygoose profile image
greygoose in reply toPixxi

Well, I think you should suggest it to the endo, because 5.3 is far too high for the TSH of someone on thyroid hormone replacement. It should be one or under.

And all the time your T3 continues to be so low, you are going to continue to have symptoms. And, all the time your TSH is high, the immune system is going to continue attacking your gland, making you more and more hypo. Obviously, your endo is a diabetes specialist, and knows nothing about thyroid!

SlowDragon profile image
SlowDragonAdministrator

So if diagnosed in 2012 how much Levo are you taking, what are your most recent results?

When 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

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop 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

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...

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.

Prof Toft - brilliant article just published

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

Pixxi profile image
Pixxi in reply toSlowDragon

Hi I had thyroid checked back in October 2017. I was taking 50mcg Levo at the time.

TSH 5.3 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 2.1 (3.1 - 6.8)

SlowDragon profile image
SlowDragonAdministrator in reply toPixxi

Extremely under medicated

Aim of Levothyroxine is to take large enough dose to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

Your FT3 is UNDER range

Ask GP for 25mcg dose increase and to also test vitamin D, folate, ferritin and B12. Very likely to be too low as you have been under medicated

Then will need to retest thyroid in 6-8 weeks after each dose increase. Likely to need several increases

50mcg is only standard starter dose.

Strictly gluten free diet helps very many. Suggest you try it for 3-6 months, if it helps stick on it

Pixxi profile image
Pixxi in reply toSlowDragon

Hi I haven't had an increase and I was hoping the endo would suggest it. I am due blood test in 2 weeks so do I increase now anyway?

SlowDragon profile image
SlowDragonAdministrator in reply toPixxi

Unbelievable that you are being seen by endo and they didn't increase dose

greygoose profile image
greygoose in reply toPixxi

No! Don't increase now, or you will skew the results. There should be a gap of at least six weeks between a dose change and a retest.

When you go for your retest, make sure that the blood draw is early in the morning - before 9 am - and that you fast over-night. Leave a gap of 24 hours between your last dose of levo and the test.

And tell your endo that weight-loss is also a symptom of low thyroid.

Pixxi profile image
Pixxi in reply togreygoose

Hi thanks all bloods done for thyroid are fasting and before 9am and I leave 24 hours between levothyroxine and blood draw except for this one which was done at 5pm so I am guessing had my test have been taken before 9am my TSH would have been higher?

greygoose profile image
greygoose in reply toPixxi

It would indeed!

Pixxi profile image
Pixxi

Endo didn't suggest dose increase, he said he'd like me to gain a bit more weight first

SlowDragon profile image
SlowDragonAdministrator in reply toPixxi

FFS ...we have had hundreds similar cases

Medics seem unable to believe someone slim can be hypo.

When it suits them they ignore the blood tests

You are probably struggling to gain weight BECAUSE your Hashimoto's has caused gut issues and extremely low vitamin levels

Get vitamins tested urgently and then review

Changing to strictly gluten free diet will help heal gut

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

Clutter profile image
Clutter

Welcome to the forum, Pixxi.

You are undermedicated to have TSH 5.3 and FT3 below range on 50mcg Levothyroxine. Ask your endo or GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 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 endo or GP.

Thyroid peroxidase and thyroglobulin 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_...

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