Graves Disease

[Trelissa]

Hi, I have type 2 diabetes, I was over-prescribed metformin which had its horrors. When I came off it I was quickly diagnosed with thyroxicosis and hypercalcemia. Saw the endocrinologist yesterday. |He sat there and said do you know what you have wrong with you, then he told me I had Graves disease. I have not been given any information, and it looks so overwhelming especially when I take my other health problems, especially with diet as I also have a stoma. It no longer feels straightforward. Is there anyone living with the same diagnosis especially also hypercalcemia

Thank you

[SlowDragon Administrator]

have you got results of private test yet

healthunlocked.com/thyroidu...

Please add results that you have had done

And results Endocrinologist was looking at, if they were different

Essential to test vitamin D, folate, ferritin and B12 too

What vitamin supplements are you currently taking

[Trelissa in reply to SlowDragon]

I am not taking any vitamins, I have not seen any blood test results. I have been told that I am doing all the right stuff as my blood tests have come back ok.

Because of hypercalcemia some vits are not wise. The B12 improved after stopping metformin.

<y daughter did the private blood test as I have been concerned, she has a rare disorder (teratogenic, due to doctors' bad prescribing - so it rarely gets looked at properly and little is known about it and she has a pituitary cyst and pineal lesion, and her hippocampus could be happier) she has low shgb and low cortisol, I am not happy with the management as they do not address anything they don't understand, - it gets complicated due to the teratogenic issures and I can see interesting anomolies regarding the hormone results and her disorder/syndrome.

[pennyannie]

Hello Teresa :

Graves tends to only get diagnosed when it manifests itself in either the thyroid or eyes and we are looking an an auto immune disease for which there is no cure - and though no two people's journey with Graves is the same it's generally triggered by stress and anxiety.

Do you have your TSH, T3 and T4 readings and ranges at diagnosis - and over range antibodies probably reading as a TRab -Thyroid Receptor antibodies result and range ?

The most recent research we have is suggesting that the longer the patients stays on the Anti Thyroid medication the better the longer term outlook for the patient -

pubmed.ncbi.nlm.nih.gov/338...

All the AT drug does is semi-block your own natural new daily production of thyroid hormones while we wait for your immune system to calm down and hopefully your thyroid function return to normal.

The NHS generally allocate around a 15-18 month widow with the AT drug and you should be monitored with regular blood tests and as your T3 and T4 fall back down into range the dose of the AT drug is titrated down and your symptoms hopefully - alleviated.

If your T3 and T4 levels fall to far through their ranges you risk suffering the equally disabling symptoms of hypothyroidism - so it's a good idea to track on your symptoms as blood tests tend to run behind symptoms by a couple of weeks,

and having online access to your medical records would also help keep you up to date - and we can explain anything to you that needs clarification , if you so wish.

If you go into Thyroid UK the charity who supports this forum there is a list of both hyper and hypo symptoms and this may help you understand better where you are in all this as it is confusing with some symptoms sitting in both extremes of ill health. thyroiduk.org :

There are 2 AT drugs - most people seem to tolerate Carbimazole very well but there is an alternative - Propylthiouracil - PTU - so just be aware and please read the PIL - Patient Information Leaflet.

When metabolism is running too fast or too slow - as in hyper and hypo - the body struggles to extract key nutrients through food - no matter how well and clean you eat -

and we do need a strong core strength to support us through any ill health and suggest you also get your ferritin, folate, B12 and vitamin D run as if these are not at good levels your health is being further compromised unnecessarily.

We do also now have research as to the most widely used definitive treatment for Graves Disease - RAI thyroid ablation, and just hope your endocrinoligist is aware and advises accordingly -

ncbi.nlm.nih.gov/pubmed/306...

I found the most all encompassing website on Graves is that of Elaine Moore and her first book - Graves Disease - A Practical Guide - elaine-moore.com

but unfortunately I only started my own research into my Graves 10 years too late after RAI thyroid ablation when very unwell and with no answers forthcoming from the NHS.

[Trelissa in reply to pennyannie]

This is really helpful thank you so much for your advice I will get the book

[pennyannie in reply to Trelissa]

I found Elaine's book quite challenging - and as a trained medical technican believe she wrote this book more for mainstream medical than patients - though I was very ill at the time trying to understand what had happened to me.

You might find Elaine's website an easier introduction into what is a poorly understood and badly treated auto immune disease by mainstream medical.

It is Stateside and there is also a forum - much like here - where those with Graves find help and support and if around, Elaine does answer private emails though has recently been recovering from cancer, another now known risk of RAI thyroid ablation.

Once we have some detailed information we will be better placed to advise you further .

[Trelissa in reply to pennyannie]

Hi , my endocrinologist has asked me to check in every month so I will start asking more questions. I have read that hypercalcemia and Graves disease are not common, and I am not how this affects Grave Disease. I am used to reading medical information as my children have a teratogenic condition and little is known about it, I have worked with researchers regarding it. Unfortunately I have little knowledge or understanding in this area.

I will look at the website and work it out from there.

Thank you very much for your help and support

[pennyannie in reply to Trelissa]

OK then - so are you now on an AT drug and the checking in monthly is to monitor symptoms against regular blood tests for TSH, T3 and T4 and titration of same as you go through this first phase of Graves ?

If your eyes become dry, gritty or excessively watering - whatever lotions or potions you may use to ease this pain - please just ensure all are Preservative Free - even those prescribed by the NHS.

I also know that the website gets updated as things have moved on in the past 20 years :