New to this group and gave a few questions.

[Eyes-wide-shut]

Hi. I’m new to this group. I have Graves but was treated with radioiodine in 2014 so now am hypothyroid. I’ve been feeling dreadful since August 2018. My endo says my bloods are perfect and I take 150 levothyroxine. I have TED too - thyroid eye disease. That has got worse. Double vision, constant headache and feeling generally bunged up. My joints ache and I feel tired ... anyone else get these symptoms? My seem to come and go ... this time it’s been 7+ months. Very draining. I’d like to hear from anyone who has a fluctuating pattern and any suggestions as to what could help. Thank you

[Eyes-wide-shut]

I meant to add. My Graves antibodies are very high 40+ range is 0.1-1.2. What can I do to bring down Graves antibodies......

[Hidden in reply to Eyes-wide-shut]

You may find the following 3 links helpful.

Hyperthyroidism - The Overactive Thyroid

thyroiduk.org/tuk/about_the...

GRAVES’ DISEASE & THYROID FOUNDATION

gdatf.org

Living with Graves' Disease

livingwithgravesdisease.com...

[SlowDragon Administrator]

Do you always have the same brand of Levothyroxine?

Many people find different brands are not interchangeable

Especially Teva brand, which upsets many many patients

First thing is, do you have any actual blood test results?

If so can you add them

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Graves or Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Ask GP to test vitamins, FT3 and FT4 and TPO and TG antibodies for Hashimoto's

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

[Hidden]

"Perfect levels" as doctors define them does not mean anything. If your levels of the actual thyroid hormones - free T4 and free T3 - are low, you are hypothyroid, no matter what your TSH is. If your free T4 levels are high in range but your free T3 levels low you most likely have a conversion problem (T4 needs to be converted to T3 which is the active thyroid hormone). Many hypothyroid people have impaired conversion leaving them hypothyroid no matter how much T4 they take. They feel better when T3 is added to the mix, or if they switch to natural desiccated thyroid.

I'm not saying that is your problem, but you'd need to know what your free T4 and free T3 levels look like. Many doctors only test the TSH (thyroid stimulating hormone) to decide whether a patient is optimally dosed on T4 meds.

Please post any lab results you have here on the forum for members to comment!

[SlowDragon Administrator]

The only perfect blood test results are ones when your symptoms are all gone....often this only happens with addition of small dose of T3 and very low or suppressed TSH

FT4 and FT3 should always be tested, but rarely are, hence almost 100,000 members on here

Current NHS thyroid treatment is frequently inadequate

[pennyannie]

Hello Eyes-wide-shut

Graves is an autoimmune disease and as such you have it for life, it's in your blood.

Your thyroid was the victim in all this and not the cause.

The cause is your immune system attacking your body, and in particular, your thyroid.

The thyroid is a major gland and when not functioning properly, you get symptoms that no doubt led you to the doctor, and ultimately the diagnosis and treatment of Graves Disease with radioactive iodine.

I too had this procedure in 2005 and also developed thyroid eye disease.

True, left untreated Graves is considered by some to be life threatening, and the Nhs believe that they can manage and treat hypothyroidism better than they can manage hyperthyroidism.

They do not know how to manage the autoimmune component of the disease and trust that by removing the thyroid they have alleviated your worst symptoms.

Well, living without a thyroid can come with it's own set of problems.

A fully functioning working thyroid would be supporting you daily, with approximately --100 T4 and 10 T3.

It is essential that you are not monitored on a TSH reading.

Graves patients have a TSI/TRab antibody that " sits on " and controls the Tsh so this measure means diddly squat. You must be monitored and dosed on T3 + T4 blood tests with the objective of getting these essential hormones balanced and into the upper quadrants of their ranges.

Some people manage to feel well on T4 alone, some simply stop converting the T4 to T3, and some people need both these hormones on their prescription to feel well again.

I seriously think if there has been a medical intervention and the thyroid either ablated or surgically removed it should be in the guidelines that both T3 and T4 need to be made available on the patients prescription. It just seems like common sense to me.

How to reduce the antibodies is the question we all ask.

Graves is said to be stress and anxiety driven, so being unwell, putting up with all you're going through, isn't helping you much.

I read of specialty TED clinics, what help are you getting within this area of expertise ?

I think in the first instance it is important to get a full thyroid evaluation and the vitamins and minerals checked out, as detailed above by Slow Dragon.

Your body has been running fast, and now maybe running too slow, if your building blocks, namely, your ferritin, folate, B12 and Vitamin D are not optimal no thyroid hormone is going to work effectively.

Once with these results post again with the ranges and people more knowledgeable than me will talk you through the next step back to wellness.

This I what I did a couple of years ago when I started my own learning curve

You might like to take a look at the following books :-

Graves Disease - A Practical Guide by Elaine Moore - this lady has the disease and went through RAI. She also has a dedicated website, in the States, for all Graves patients to read, ask questions, and learn from.

Tired Thyroid - from hyper to hypo to healing - by Barbara S Lougheed - this American lady also has the disease and in this book, among other things, she debunks the TSH reading:

Your Thyroid and How to keep it Healthy - by Dr Barry Durrant Peatfield - this doctor has hypothyroidism, his book is another goto bible, easy to understand and common sense.

There is a lot to read, reread and understand, it will take time, but at least you've made the right decision, to come on here, talk through your situation, and starting your own learning curve back to better health, taking an active role in your own recovery.

[Eyes-wide-shut]

Thank you all for your comments and pointers. I am so far from well and so running out of hope. So all of your suggestions are really appreciated. I’ll post my latest blood results shortly. Thank you again. 🙏