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Thyroid UK
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Diagnosing graves disease in retrospect?

I was diagnosed with thyroid cancer in May 2017. I had my thyroid removed in the same month and have since been taking levothyroxine.

I'm still trying to work out what caused the cancer and if my thyroid was working properly when I still had it. I had it tested in the past, but the result have always come back as ok. However, I now have a long list of past symptoms that seem to be related to thyroid problems but seem to have disappeared since being on the medication. This includes anxiety, mood swings, extreme insomnia, melasma, rosacea, white spots on my finger nails, thinning hair, psoriasis and eczema, the loss of my handwriting (it has since come back... after 16 years), severe memory problems, concentration issues, depression, extreme sweating caused by being nervous, skin intolerance to sunlight, sinus problems, bowel problems, eventually a goitre and then the diagnosis of thyroid cancer.

I have always looked at these symptoms in isolation but have now realised that they all seem to be linked to thyroid problems. This has had a huge impact on my whole adult life and I'm concerned that my children may have inherited the condition. Is there a way I can have a diagnosis in retrospect? And if there is, is there anything I can do to raise awareness of what happened to me to change the way people are tested for thyroid health?

Thank you very much for your comments in advance!

13 Replies
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Sounds like more Hashimoto's, than Graves

But both are autoimmune

A lot of these symptoms can also be due to low vitamin levels

Testing thyroid antibodies may reveal more (even after thyroidectomy)

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 if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

Hashimoto's (or Graves) 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, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

drknews.com/changing-your-d...

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Thank you so much, this is really insightful! If I have these tests done, would they still be able to pick up if there was a condition prior to having my thyroid removed? I'm now on levothyroxine and the blood results are within range and I'm feeling so much better, physically. But I'm just keen to find out if there was anything previousl, in case my kids develop symptoms....

Are there cases where blood tests don't pick up on a condition? I had mine checked years ago and they came back as normal. But I don't know what they checked for and I don't know what the exact results were and the data is no longer available.

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Sounds more like you were hypo, or had Hashi's, than hyper with Grave's. However, if you did have Grave's, you will still have the antibodies in your system, so could test for them. But, if you had Hashi's, the antibodies would be gone by now. And, the only way you could know if you were hypo or hyper is by looking at your past blood test results before the op - or post them on here, and let us have a look. :)

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I think I was on the verge of hypo when they tested my thyroid when I was pregnant. But I was feeling very different to how I was feeling before... whereas I would normally struggle to sleep I struggled to stay awake. I was also feeling very sick. But I thought they were just normal pregnancy symptoms. That said, I felt a lot more exhausted than I did with my previous pregnancy.

Can you go from hyper to hypo? And have graves and hashimotos at the same time?

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You can, indeed, have Hashi's and Grave's at the same time - it's rare, but it happens.

However, with Hashi's, levels can go from hypo to 'hyper'-like very quickly. But, it's not true hyper in the sense that the thyroid is over-producing hormone. FT4/3 levels rise sharply because of store of hormone that is dumped into the blood stream by the dying thyroid cells.

But, if you are hypo, you cannot become hyper because the thyroid can never regenerate itself enough to make enough hormone to make you hyper - if you see what I mean. Hyper is over-production of hormone, hypo is under-production.

The problem is that doctors don't do the right tests, they don't test the antibodies, and just assume that a low TSH equals hyper. To know if you have both Hashi's and Grave's, you need tested:

TPO antibodies and Tg antibodies for Hashi's

TRAB or TSI antibodies for Grave's.

If these are not tested, you do not have a reliable diagnosis. You just have a guess and/or an assumption on the part of your doctor.

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If you had surgury to remove your thyroid chances are you need NDT to feel well

Your original symptoms may well have been both Graves and Hashimotos but you need thyroid results and the histology report on your removed thyroid to know for sure

Go and request them ...your legally entitled to them

And yes its highly likely your children could suffer ...my husband developed Graves ...his mother had severe Endometriosis and our daugher and 4 of 6 grandchildren all have Hashimotos and only 1 is ok on levo the rest need NDT

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I think my thyroid has been incinerated.... there is probably no way I can get an "autopsy". Can you have both, graves and hashimotos at the same time?

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Yes thats what my Husband had ...have you asked for your records to be checked for antibody tests...that should say what antibodies you had

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Get online access to your medical record and you may be able to see past blood test results

Moving forward you can still have TPO and TG thyroid antibodies, so consider getting full Thyroid and vitamin testing privately

Low vitamin levels are extremely common on Levothyroxine

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 if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

(If also on T3, make sure to take last dose exactly 12 hours prior to test)

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

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

You might look at DIO2 gene test too. When considering next generation, it's all in our DNA. Many people with thyroid problems have DNA polymorphisms

bluehorizonmedicals.co.uk/t...

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What is NDT? I am new here on the sight and not very familiar with a lot of stuff. Thanks!

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In which case you might find my abbreviations and acronyms document of some use:

dropbox.com/s/og3lmxa1dqadb...

NDT = Natural Desiccated Thyroid = dried and powdered animal (pig) thyroid gland prepared as a medicine.

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Natural dessicated thyroid from pigs which was always used for over 100 years before levothyroxine was foisted onto the scene

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You need to get hold of your records - probably from both hospital and GP - to stand a chance. These should be readily available just by asking - if you hit any barriers, post back.

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