Guost

[Guost]

Hi everyone

I have Hashimotos hypothyroidism and have been fine on 62mg of thyroxine a day. Up until 5 months ago, now I feel ill everyday. I have really bad dry puffy eyes. Does anyone know why and what I can do. Thanks

[greygoose]

You need an increase in dose. You can't expect to stay on the same dose forever with Hashi's, because the disease is slowly destroying your thyroid, so you are becoming more and more hypo. When did you last have a blood test? What were the results?

[SlowDragon Administrator]

Hardly surprising if been left on such a low dose levothyroxine

Unless extremely petite likely to need to slowly increase dose levothyroxine up until on at least on 100mcg levothyroxine per day

Approx how much do you weigh in kilo

What were your most recent thyroid results

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease

Have you had thyroid antibodies tested yet

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Currently 20% off until May 31st

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Are you currently taking any vitamin supplements

Which brand of levothyroxine are you currently taking

[Guost in reply to SlowDragon]

Thank you for theyMy cortisol was 318. My B12 488. Vitamin D 57

TSH is going back and forth from 0.16 to 5.03.

My Endo took me down to low dose of thyroxine but now I’m going up gradually so I don’t swing back again. I am petite and react quickly to small doses but I know I need to go up again as I feel so ill.

[SlowDragon Administrator in reply to Guost]

My B12 488.

Vitamin D 57

Very important to maintain OPTIMAL vitamin levels

No folate or ferritin results

Is vitamin D 57nmol?

What vitamin supplements are you currently taking

TSH is going back and forth from 0.16 to 5.03.

So you know you have Hashimoto’s levels can swing especially early in disease

Have you had coeliac blood test done

Are you now on strictly gluten free diet this can reduce the change in levels

cortisol was 318.

What time of day was cortisol test

Levels should improve as dose levothyroxine is increased

[pennyannie]

Hello Guost and welcome to the forum :

It's essential that you are dosed and monitored on your T3 and T4 blood test results :

Without a TSH, T3 and T4 blood test you have no idea whether you are overmedicated or not, and nor does your endocrinologist, and saying this on just a TSH and T4 reading is not correct.

We generally feel at our best when our T4 is towards the top quadrant of the range as this should, in theory, convert to a decent level of T3.

T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body, and it is low T3 that causes the symptoms of hypothyroidism, just as too high a T3 for you and you may experience hyper type symptoms.

Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D so these needs to be tested and supplemented where necessary.

Having Hashimoto's you will experience erratic levels of T3 and T4 as your thyroid gland is destructed and disabled by this disease and read of some people, sensing a ' swing ' in symptoms, stop their medication for a day or two, to try and offset the severity of the swing.

However, swings swing back and you'll likely find your thyroid gland less productive long term and need a dose increase in thyroid hormone replacement.

I believe with Hashimoto's food intolerances are common, as is having to heal the gut, before mediation works well and Dr Izabella Wentz has written extensively in this subject . thyroidpharmacist.com

As for the Thyroid Eye Disease you could contact tedct.org who can signpost you to a specialist clinic in your area and please, whatever lotions, potions and drops you use for your eyes to alleviate symptoms, just ensure every product is Preservative Free :

Please arrange for your doctor to run further thyroid blood tests to include the TSH. T3 and T4 and vitamins and mineral and if your doctor can't help you there are private companies who can organise the tests for you, and some even offer a nurse to visit you at home to draw the blood for you and post it off, thereby reducing your stress levels when not well.

Once you have back the private blood test results and ranges simply post everything on here, ranges as well. in a new post, and you will be talked through what it all means and what you ca do next to help yourself back to better health.

You can find all the details on the thyroiduk.org website.

[Guost in reply to pennyannie]

Thank you for that yes you are right I have been swinging back and forth. Now I think my dose is too low as I feel dreadful x

[Guost]

Hi no ferritin or foliate and no coeliac testCortisol was done in the afternoon

I have had hashimotos now 4 years been fine up until 5 months ago.

I am on gluten free diet