Hi there

[Zoeye]

Thanks for letting me join. I am 32 years old. I have found it hard to come to terms with my hypothyroidism. I was diagnosed hypothyroid in 2011 but did not start treatment until 2012 when my TSH was over 20 and a Free T4 below 11. My symptoms are mainly not going to the toilet every day, acne, dry skin, heavy periods, tiredness, low mood, memory loss, low concentration, tingling in feet, splitting nails, weight gain. Any advice would be welcome, thank you

December 2017

TSH 4.90 (0.2 - 4.2)

FREE T4 14.5 (12 - 22)

FREE T3 3.9 (3.1 - 6.8)

FERRITIN 58 (30 - 400)

FOLATE 2.4 (2.5 - 19.5)

VITAMIN B12 236 (190 - 900)

VITAMIN D TOTAL 60.2 (<25 SEVERE...25 - 50 DEFICIENT....50 - 75 SUBOPTIMAL...>75 ADEQUATE)

(Working my way up to taking ferrous fumarate 210mg for iron deficiency found in 2014 (the tablets taste awful), prescribed folic acid 5mg once a day for folate deficiency, 3000iu D3 moved down in September 2017 from 9000iu due to feeling unwell on the 9000iu - confirmed vitamin D deficient, prescribed hydroxocoblamin injections on NHS for suspected low B12 symptoms - B12 result before injection was given)

[Hellonwheels]

It appears you are still quite under medicated. Others have way more experience than I do, but your TSH alone says a lot. Most feel better with it around 1 or below. Also T4 is usually optimal above halfway through range, and T3 around 2/3-3/4 through the range.

[Zoeye in reply to Hellonwheels]

Hi, well the thing is, I don't know what dose I should be on. Each set of my results comes out different. I have no idea what I need to be doing.

[bantam12 in reply to Zoeye]

What dose did your Dr tell you to take ? You are undermedicated so whatever dose you are on is not enough, you need to see your GP to get a higher dose prescribed.

[Zoeye in reply to bantam12]

Hi, my endo told me to take 175mcg. My GP told me to take 25mcg

[bantam12 in reply to Zoeye]

So which are you taking ?

[Zoeye in reply to bantam12]

25mcg, the GP said it was to be on the safe side in case of any sharp rises in thyroid hormone levels.

[Hellonwheels in reply to Zoeye]

Ask your doctor for an increase, and retest in 6-8 weeks.

[bantam12 in reply to Zoeye]

Well your GP is clueless, 25mcg is a tiny dose that won't have much effect at all. I suggest you take the dose your Endo prescibed but don't jump straight from 25 to 175 in one go, if your GP won't prescribe higher doses get back to your Endo and ask him/her to sort it out.

[shaws in reply to Zoeye]

Your doctor is wrong. I'd change to another doctor who might know a little bit more than yours.

50mcg is a starting dose with increments of 25mcg every six weeks after a blood test with the aim of a TSH is 1 or lower.

[Clutter in reply to Zoeye]

Zoeye,

Endocrinologist is a specialist. Your GP has no business interfering with the endo's treatment plan. Reducing dose from 175mcg to 25mcg shows GPs lack of knowledge and competence.

[Zoeye in reply to Clutter]

Hi and thanks, I am looking to change endocrinologists as the current one says he does not understand my fluctuating results and has asked me on more than one occasion if I have been taking levo correctly when unexpected results come back to him.

[Clutter in reply to Zoeye]

Zoeye,

He seems to know more than your GP. What unexpected results did you have and were you taking Levothyroxine correctly?

[Zoeye in reply to Clutter]

I can certainly post the ones when under his care. I was taking levothyroxine correctly at the time.

Apr 2017 (200mcg levothyroxine and 10mcg T3) endo said I was thyrotoxic

TSH <0.02 (0.2 - 4.2)

FREE T4 22.7 (12 - 22)

FREE T3 4.6 (3.1 - 6.8)

THYROID PEROXIDASE ANTIBODY 304.5 (<34)

THYROGLOBULIN ANTIBODY 265.3 (<115)

Jun 2017 (150mcg levothyroxine) endo liked these results

TSH 0.03 (0.2 - 4.2)

FREE T4 21.3 (12 - 22)

FREE T3 4.5 (3.1 - 6.8)

Sep 2017 (150mcg levothyroxine) endo questioned compliance

TSH 5.4 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 3.5 (3.1 - 6.8)

Nov 2017 (175mcg levothyroxine) endo said I was thyrotoxic again

TSH <0.02 (0.2 - 4.2)

FREE T4 25.3 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

[Clutter in reply to Zoeye]

Zoeye,

It's not wrong to ask a patient whether they are compliant, in fact, endo has a duty to ask when results indicate patient may not be. However, I would expect an endo to realise that the fluctuation is probably caused by autoimmune attacks on your thyroid as your antibodies are high.

Your endo seems to consider FT4 slightlly over range as thyrotoxic. It's not as long as FT3 is withing range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your endo.

[Zoeye in reply to Clutter]

Hi and thanks, he asked me if I was compliant, I said yes and he said he didn't think I was.

[Zoeye in reply to Clutter]

He is also the one who took my T3 away.

[Clutter in reply to Zoeye]

Zoeye,

You'd better figure out which is the least worst option, your disbelieving endo who nevertheless dosed you properly on Levothyroxine, or your GP who didn't.

Was T3 withdrawn because of your lactose-intolerance?

[Zoeye in reply to Clutter]

No it was withdrawn even though I felt well on it

[Clutter in reply to Zoeye]

Zoeye,

So the lactose in T3 wasn't a problem but it is in Levothyroxine?

[Zoeye in reply to Clutter]

That's correct, the previous endo believed my gut problem was sorted with the addition of T3

[Zoeye in reply to Clutter]

Previous endo told me I need the T3

[Clutter in reply to Zoeye]

Zoeye,

Perhaps you can go back to your previous endo?

[Zoeye in reply to Clutter]

Hi, my GP said it was too far for me to travel to see her. But she understood what I needed.

[Clutter in reply to Zoeye]

Zoeye,

Oh right, I remember you saying your endo is in London and it's too far to travel. As GP understands you need T3 why doesn't she prescribe it?

[Zoeye in reply to Clutter]

I could try, I need to take some evidence with me to support what I'll ask her/him

[Clutter in reply to Zoeye]

Zoeye,

Didn't previous endo tell GP what dose to prescribe?

[Zoeye in reply to Clutter]

No the previous endo didn't, only she prescribed it to me. She then left and then I was given this endo who took it away

[Clutter in reply to Zoeye]

Zoeye,

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

Perhaps you could write to the new endo and say you felt better with T3 and ask for it to be reinstated or ask the hospital to assign you to an endo who doesn't disapprove of T3.

[SlowDragon Administrator]

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Can you add vitamin results and ranges too

Vitamin D, folate, ferritin and B12

[Zoeye in reply to SlowDragon]

Hi, I believe I have Hashimotos, I am not very sure. Would this be the reason for the varying results and changes in dose? If so then I am not to blame for any changes in thyroid levels?

THYROID PEROXIDASE ANTIBODY 84 (<34)

THYROGLOBULIN ANTIBODY 365.3 (<115)

Yes I can add vitamins and minerals

[SlowDragon Administrator in reply to Zoeye]

Yes 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 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 gut and gluten connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

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...

[Zoeye in reply to SlowDragon]

Vitamins and minerals added.

[SlowDragon Administrator in reply to Zoeye]

Vitamins are all too low because Levothyroxine dose is inadequate

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

[Zoeye in reply to SlowDragon]

Thanks, I am having coeliac blood test repeated as I did it wrong the first time

[SlowDragon Administrator in reply to Zoeye]

Vast majority are non coeliac gluten intolerant

Same result you need to be strictly gluten free

Have you got date for endoscopy

[Zoeye in reply to SlowDragon]

Ok thanks, yes, my digestive symptoms strongly suggest coeliac as do the ever increasing vitamin and mineral deficiencies cropping up. Also getting mouth ulcers and cold sores on my lips. GP says on that basis it is worth redoing the coeliac test and doing it properly.

[Zoeye in reply to SlowDragon]

No date for endoscopy, I haven't even been referred for one.

[SlowDragon Administrator in reply to Zoeye]

Then go in and see GP and insist

If they can't give you a date just go gluten free

You will need to do so regardless of endoscopy anyway

[SlowDragon Administrator]

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 at

[e-mail]

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[Zoeye]

Thanks I am planning to go back to T3 after it was stopped.

Vitamin C I used to take but it's very heavy on my stomach

[SlowDragon Administrator in reply to Zoeye]

Solgar do one that's less acidic - Ester C

[Hillwoman]

Sorry, totally off topic, but I've noticed your balloon avatar photo seems to be very popular on the forum at the moment.