My son was diagnosed with Grave's disease a couple of months ago and the endo says it is now cured. He is still getting palpitations so bad that he was rushed into hospital with a suspected heart attack. Short tempered and all the rest of the effects from an under active thyroid. I have been treated for a thyroid for the last 40 years. His weight has spiralled and he cannot stay awake. He has had to give up his job as he has to drive for his job, and it is not safe to drive long distances any longer, as he cannot stay awake for long drives. The endo has said that he needs no further treatment and after his last blood test a week ago his results are T3 3.3, T4 14.4, and TSH 1.1. It is really scary now as he has a family to support and is earning very little money selling online, but not enough to get by. Please help as he really needs to get back into the job market
Can you cure Graves disease: My son was diagnosed... - Thyroid UK
I'll ask the normal question: how was he diagnosed with Grave's? Did they test antibodies? If they didn't then his 'diagnosis' is suspect.
How was he 'cured'? What treatment did he receive? I don't have Grave's myself, I have Hashi's, but as far as I know, neither of them are curable. On the other hand, they can both go into remission.
It looks like he could now be hypo, but difficult to say with any certitude, because you haven't given the ranges for those results. If you could please add those, it would make answering your questions easier.
Sadly no, it can’t be cured but remission is possible.
However, this normally takes more than a ‘couple of months’, which, as Greygoose says,begs the question as to whether he did in fact have Graves’.
I agree with the others who have responded than it is unlikely that your son had Graves.
His symptoms and the fact that you also have a thyroid condition points to a genetic condition commonly known as Thyroid Hormone Resistance. It causes hypothyroid symptoms and requires very high T3 levels in the body (often above the normal range) to overcome the resistance.
Could you research a thyroid specialist and ask for a referral to a specialist in thyroid care rather than a diabetic endocrinologist? Most Endo's are diabetic specialists and know next to nothing about thyroid disease. You could Google the Endo he saw to find out what his specialism is and then go back to the GP and ask for referral to someone of your choice.
In the meantime, get vitamin levels tested, Vit D, Vit B12, folate and ferritin. Ensure diet is super healthy as excellent nutrition is needed to recover.
I can’t imagine he is ‘cured’ when your Graves is under control you are in remission ( I’ve been in remission for five years now). My hospital treated me ‘the fast way’ as the endo put it and that took exactly a year. So it takes a while. I did put the weight I lost in the beginning back on but no more than that and the palpitations disappeared once I started my treatment. I did get hyper symptoms every time I needed an increase in levothyroxine during my treatment - I was treated with block and replace - I thought I was becoming hyper again and someone one here said I was actually becoming hypo, sure enough a bit more levo sorted me out.
He certainly has some Graves symptoms but it doesn’t sound as if he is fit and well. By the time I was discharged I was well able for normal day to day living.
He needs to get a copy of his test results along with their.
Ab ranges and as Nanaedake says above he needs to have his ferritin, folates, vitamin D and vitamin B12 tested - all of those need to be near the top of their ranges to help his thyroid work well.
As the others say he needs a proper thyroid specialist rather than a diabetologist. If you send an email to ThyroidUK.org and find out if there is a recommended endocrinologist (they have been recommended by other thyroid patients and found to be knowledgeable and also patient friendly) near or within travelling spdistance from your son.
Can you add the ranges on these results
FT4 and FT3 look very low. But you need to add the ranges to be certain
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. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Ask GP to test vitamins and antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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
Private testing for suspected Graves - TSI or TRab antibodies
If TPO or TG antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though mildly raised TPO or TG can be due to Graves
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's or Graves. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies and Graves antibodies TSI or TRab tested at least once .
Link about thyroid blood tests
Link about antibodies and Hashimoto's
List of hypothyroid symptoms
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower antibodies
Ideally ask GP for coeliac blood test first
How can someone be considered "Cured" when they are so unwell????
The endo seems completely incompetent if that's what he said! Unless he meant your son hasn't got Graves any more.
He sounds very unwell. Did he have his antibodies tested for Graves ? It takes longer than a couple of months to go into remission it's usually anything between 12-24 if you are lucky. Sadly the antibodies are still in the body so you can go back to being hyperactive again. Maybe he should go back to his GP and get a referral again ? In the meantime if you could post his blood test results on here with the ranges I'm sure there will be someone who can help . Hope it all works out and he feels better soon.
Graves Disease is an autoimmune condition and as such, it is for life.
It can be life threatening, in which case, after a course of medication, thyroid removal by surgery or thyroid ablation with radioactive iodine might be suggested by the Nhs.
However the thyroid is the victim in all this, and not the cause.
Remission is possible - and I would think it is in everybody's best interest to keep their thyroid, as it is a major gland and a major player in your overall health and well being.
As detailed above, there seems to be some confusion as to your son's situation.
It would be prudent to return to the GP and ask for an explanation and a referral to an endocrinologist who has thyroid as their speciality.
If he has Graves he needs positive blood test for the antibodies TSI and or Trab.
With Graves the body is overstimulated so he'd be running fast and loosing weight -
the symptoms described sound more hypo than hyper - falling asleep, weight gain -
maybe he has Hashimoto's where the thyroid ' swings ' from hyper to hypo ?
Either way you need a proper diagnosis with a full thyroid evaluation as detailed in earlier posts.
This endo needs to be removed from clinic immediately - he's a liability to the NHS.
Since Graves is an autoimmune I suggest seeing a rheumatologist. The endo only treats the thyroid. A rheumatologist will address the autoimmune part of the disease which is attacking his thyroid. I have hashimoto's which also attacks the thyroid, but it is now attacking my kidneys and I am stage II kidney failure. The endo I was seeing didn't know what to do for me, so my primary dr referred me to a rheumatologist. I've been stage 11 now for 3 years with no further progression, but I'll never get back the function that I have lost. The rheumatologist was able to get it under control with a drug called Plaquanil. I hope this helps. Good luck.
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