Graves disease and Hashimotos thyroiditis - Thyroid UK

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Graves disease and Hashimotos thyroiditis

Minischnauzermom profile image
Minischnauzermom

Hello. I just wanted to ask if anyone has been diagnosed with Graves and Hashimotos with some thyroid Opthalmology and a benign nodule and cyst. I feel like I'm the only one! How can someone be hyper and hypo at the same time. My endocrinologist says I'm lucky, she hopes they will balance themselves in time? I've been taking Methimazole for 8 months and trying out holistic approaches like acupuncture and Chinese herbs. I'd rather not opt for RAI or surgery. Any advice would be appreciated.

43 Replies

On what basis was your diagnosis made? What tests did they do?

My endocrinologist says I'm lucky, she hopes they will balance themselves in time?

I don't really think your endo understand how this works. If you have Hashi's, eventually, it will completely destroy your thyroid. I don't call that very balanced.

I don't really know how it all works. Maybe I heard wrong due to my brain fog during my first appointment. It's all a bit overwhelming. I need to get my facts right, so I will be speaking to my endo soon. Thanks for your message.

What you need is a print-out of your blood test results. Or on-line access, if your GP surgery provides that. It's always a good idea to get a print-out, or whatever, to know exactly what was tested, and exactly what the results were - we can help you interpret them - because doctors aren't always very good at interpreting themselves. Then, you need to keep your own records, noting how you felt at the time of the blood test, what you were taking, extra. This information will be invaluable in the future - especially if you're suffering from brain-fog right now. It's good to be an informed patient! :)

You haven't got it wrong, I also have Hashimotos and Graves, I was on Thyroxine for about 17yrs, I am now on Armour and I also take selenium folic acid vit. D3 folic acid. I have thyroid etye disease. huge weight gain. So no you are not mistaken but I don't think they balance themselves out sadly.

Hi dottydame. Great to hear from you. Wow, you've been living with this disease for such a long time. What made you decide to not go ahead with RAI or surgery? I was ready to be done with this Thyroid at Christmas but after reading about the regrets of some patients, I'm starting to have my doubts. I too have been taking selenium and D3 as well as Methimazole. I recently read online that collagen peptide and hyaluronic acid is meant to be good for the thyroid.. as well as hair, skin and nails. I'm checking with my endocrinologist before taking it! I'm open to anything acupuncture, crystals!! I hope there's a miracle cure for you. Good luck and glad I'm not alone.

Hi Greygoose.

May I ask if you know, when the thyroid is destroyed by Hashimotos does the pituitary gland still send the TSH? Or does it still carry on regardless?

Kind regards

The pituitary doesn't know that the thyroid is dead. It only knows how much thyroid hormone is in the blood. So, if there's not enough, it continues to produce TSH to try and increase the level.

Thank you 🙏

You're welcome. :)

Valarian profile image
Valarian in reply to greygoose

I guess the endo meant that as Hashi’s will eventually destroy the thyroid, it will become incapable of generating excessively high thyroid levels anyway !

It’s supposedly quite rare to be diagnosed with both, and I’ve sometimes wondered whether at least some of the cases we see here weren’t Hashi’s all along (eg where there has been no TRAb/TSI test to confirm Graves’).

greygoose profile image
greygoose in reply to Valarian

Well, I suppose we have to give her the benefit of the doubt. But, given that very few endos actually know how Hashi's work, I somehow doubt that's what she meant.

Yes, I've heard that it's rare. But an awful lot of things turn out to be rare because they're rarely tested for!

We do see an awful lot of cases on here where people were 'diagnosed' Grave's, but said 'diagnosis' never confirmed with TRAB or TSI, and it turned out to be Hashi's in the end. Happens all the time.

But, another thing I wonder, it is said that with Grave's, TPOab and/or TgAB can be high, but it doesn't mean they have Hashi's. So, is that actually true? Or, is it that these people actually do have both Grave's and Hashi's. And, how would anyone tell the difference? I feel that this is a huge grey area, and no-one really has any factual answers, only opinions. What do you think?

Hi again

I have a printout of my blood test results back in May 2019 at my first appointment, so here they are below. Let me know what you think of them.. I've only listed the abnormal (high) results

ALT (SGPT) 37 IU/l

T4 5.38 ng/dl

TSH <0.006 uIU/ml (low)

TRAB 10.73 IU/l

TSI 5.66 IU/l

TPO 67 IU/ml

T3 17.8pg/ml

My latest results are a lot better.. showing normal... But I have another blood test coming up in 2 weeks. So I'm hoping they remain stable.

Sorry, but we absolutely need the ranges for those results, as they vary from lab to lab. Was FT3 tested? Is that an FT4 result or TT4?

No probs.. here they are

ALT (SGPT) 37 IU/l (Range 0-32)

T4 5.38 ng/dl (0.82-1.77)

TSH <0.006 uIU/ml (low) (0.450-4.500)

TRAB 10.73 IU/l (0.00-1.75)

TSI 5.66 IU/l (0.00 - 0.55)

TPO 67 IU/ml (0-34)

T3 17.8pg/ml (2.0-4.4)

T4 - full test name is Thyroxine (T4) Free, Direct, S T4, Free (Direct)

Is that what you meant..? otherwise can't see FT3 or FT4 or TT4

Yes, that's what I meant. The F in FT3 stands for Free. T stands for Total, so Total T4 or Total T3. But they are pretty useless tests, you don't want those, anyway.

TRAB and TSI are Grave's antibodies. So, you definitely have Grave's.

TPO antibodies are Hashi's antibodies, and those aren't so high, so it comes back to my speculations of above:

But, another thing I wonder, it is said that with Grave's, TPOab and/or TgAB can be high, but it doesn't mean they have Hashi's. So, is that actually true? Or, is it that these people actually do have both Grave's and Hashi's. And, how would anyone tell the difference? I feel that this is a huge grey area, and no-one really has any factual answers, only opinions.

That is to say: do you really have Hashi's, or are the antibodies just raised because you have Grave's? And, absolutely no point asking a doctor that, because they wouldn't have the slightest idea but would probably invent something!

On the other hand, your FT4 and FT3 are over-range, but I wouldn't have thought they were high enough for Grave's, more like Hashi's. This is a mystery I would like to know more about. So, I appeal to a higher judge: diogenes, what do you thing?

diogenes profile image
diogenes in reply to greygoose

I shall have to consult higher opinion. It's outside my knowledge.

greygoose profile image
greygoose in reply to diogenes

Thank you. :)

diogenes profile image
diogenes in reply to greygoose

Having consulted here are the expert's opinions:

80% of Graves’ patients have TPO-Ab and 90% of Hashimoto. This does not discriminate TSH R ab is 90% Graves’ at the initial hyperthyroid phase.,but only 10% in Hashimoto.

Ultrasound is different, blood flow enhanced in Graves’ and little in Hashimoto.

Sctintigraphy is different, high uptake in Graves’, low uptake in Hashi.

Mostly diagnosis is clear and the two are distinguishable entities, but there are rare forms of Hashitoxicois which fluctuate from one condition to the other, but those overlap syndromes are rare (1%).

However, if disease is long lasting and had not been properly diagnosed at the beginning, it may be difficult or not possible in late stages.

greygoose profile image
greygoose in reply to diogenes

OK, but, how many thyroid patients ever get a scintigraphy? Very few ever even get an ultrasound. From what I can gather, what normally happens is the patient has a suppressed TSH so the automatic 'diagnosis' is Grave's. TPOab might or might not be tested, and is often high, so the patient gets a 'diagnosis' of Grave's plus Hashi's. It's difficult to even get doctors to test TRAB, from what I've read on here. So, I don't think we're much further advanced, and a lot of people get some sort of false diagnosis.

diogenes profile image
diogenes in reply to greygoose

Some further comment applying to US doctors and probably UK also:

The problem is the US doctors, they cannot do any ultrasound, and they do not do any uptake studies for fear of radioactivity. Basically, they know nothing.

Like they do not do any T3. Same story here. They fail at simple jobs.

greygoose profile image
greygoose in reply to diogenes

Why can't US doctors do an ultrasound?

diogenes profile image
diogenes in reply to greygoose

I suppose a belief that USound can further damage already damaged tissue. It isn't true but the US have laid down rules

diogenes profile image
diogenes in reply to greygoose

Anoth problem is that ultrasound cannot distinguish whether the observed tissue is active or not. But it can measure size of gland - atrophy will make it smaller. To get knowledge on working tissue, scintigraphy is required.

greygoose profile image
greygoose in reply to diogenes

So, scintigraphy should be a preferred diagnostic tool, rather than just relying on blood tests, then - especially as they often don't do the right blood tests!

I didn't know there was that misapprehension about ultrasound.

Hi greygoose (I'm not sure if this message also gets to diogenes - I'm hoping so). I'm British, living in USA. I actually did have an ultrasound... a few months after my initial visit where they discovered my nodule and cyst and that my thyroid was off the scan showing it was double the size and increased blood flow showing Graves. I had a TRAB test in November and it was still as high as my initial bloodtest in May at 10.60 (range 0.00 - 1.75) but my TSH was 5.970 (range 0.450 - 4.500).. by the way, my January blood test TSH is 0.472... so meds are working. But as my TRAB had not changed.. I don't know what to think!? I will request a scintigraphy at my next appointment. Thanks for all the advice.

No, diogenes will not be notified of your comment automatically, but I've alerted him. :)

I really don't know what to think, either. I'm tempted to think that hyperthyroidism is more complicated than hypothyroidism - but maybe that's down to ignorance - both mine and that of the average doctor!

Wonderful.. thank you mother for your genes.. my mum had Graves then hypo. I definitely have been experiencing the rollercoaster of symptoms. Weight gain / loss, hot/cold, rapid heart rate, hairloss, puffy eyes, neck pain ecetera

Hello Minischnauzermom

You might like to start reading up on your own condition and as well as this amazing site there is the Elaine Moore Graves Disease Foundation website in the States. This lady has Graves and is a medical researcher and her website covers many aspects of AI thyroid issues.

Thanks Pennyannie. I saw that they sell her book on Amazon. I will be ordering it today.

I purchased her book Graves Disease A Practical Guide and have to confess found it a bit heavy going, but then I am dyslexic and at the time of reading said book seriously unwell and being referred to as a conundrum by my doctor.

I had to learn of my situation back to front, becoming very unwell some 8 years after being treated with RAI for Graves Disease, a treatment I deeply regret.

Since you have known eye issues, RAI should not even be an option open to you as this treatment can exacerbate or even cause thyroid eye disease.

You can access her website today and feel it an easier medium than to read about the issues surrounding RAI, which was what I was dealing with, and that no NHS professional would acknowledge.

Elaine went down the RAI route herself, hence everything that she has researched, written and challenged the medical profession on, ever since.

There is an open forum much like this amazing site where you can ask opinion from members and Elaine takes an active role and answers individuals with complex issues.

I am with Graves Disease and now have to manage lingering Graves, thyroid eye disease and hypothyroidism. I am self medicating and source my own full spectrum thyroid hormone replacement.

Thanks for sharing. I'm definitely ruling out RAI now. Although my eye doctor advised that as long as I take steroids for 2 weeks prior and 4 weeks after, it should not cause any problems, but I really don't want to risk it! My sister had a cyst on her thyroid, so she had it removed. Her surgery went well, but that has its own risks - I really wish it would just go away! P.S I read reviews on Amazon about the book and you're right it is heavy... Lots of technical medical words.. I can just skim over those!

OK - good - it's not just me then !!

Seriously, yes, I've read how some patients are offered steroids before RAI - but why have this barbaric treatment that slowly burns out and disables your thyroid ?

The thyroid is victim in all this, not the cause, the cause is your immune system attacking your body.

The thyroid is a major gland responsible for full body synchronisation, your physical, emotional, mental. psychological and spiritual wellbeing, your inner central heating system and your metabolism.

Living without a thyroid comes with it's own set of problems as currently you can't easily obtain anything other than Levothyroxine on the NHS which is just 1 of the 4 known hormones you have lost.

There are many reasons not to consider RAI - please do your research.

Yes, it is the treatment of choice, but don't be misled,

It's the treatment of choice as it is a quick 20 minute appointment in outpatients and a discharge out of the hospital. It is not necessarily in the patients best interests.

There is pressure on doctors to reduce outpatient waiting times, and doctors are paid to follow the rules and guidelines that the NHS work to.

Professor Toft the eminent endocrinologist wrote an article in 2017 - Thyroid Hormone Treatment - A Counterblast To Guidelines - it is on this website somewhere - I'm sorry, I'm not computer literate to find it for you - anyway - in this article, amongst some interesting other observations, he states :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves Disease irrespective of age or number of recurrences of hyperthyroidism. "

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I only have Hashimoto's, but do have an eye problem and use Systane drops (you can get those on prescription). It seems that blepharitis ("Dry eyes") can be caused by both Hashis and Graves, but for different reasons.

I have read that you can have both Hashi's and Graves at the same time. Which makes sense because it must be possible to have both sorts of antibodies.

Minischnauzermom profile image
Minischnauzermom in reply to Hidden

Thanks for your message. My eyes seem to be watery, but do get a bit itchy, so I have been using some eye drops, but I'm more concerned with one of my eyes going cross-eyed.. I end up with a headache at the end of the day because of eye strain!

Please just make sure whatever eye drops, ointments, lotions or potions you use are preservative free.

Hi, I was diagnosed initially by Endo has having Graves, but antibodies now show Hashimotos. I also have TED, which I manage with tinted glasses, eye drops, selenium & lutein & zeazanthin (helps with dryness). Keep posting if you need further advice or support!

Thanks I'll look into lutein and zeaxanthin (never heard of them). Think I might have to consider some tinted specs.. the bright lights are starting to bother me.

The lutein & zeazanthin was a recommendation from this forum. I buy eye complex 7 from Amazon. I definitely feel better with tinted glasses & even wear a baseball cap in the gym where lights are still too bright for me. Not sure if you are in the UK, but I’ve had lots of great advice from TEDct- they send out info packs and have a helpline.

I have both Graves' and Hashimoto's antibodies too. I have been taking anti-thyroid medication for a while i.e. when diagnosed, the Graves' was prevalent and I was clearly hyperthyroid. What your endo probably means by being lucky and them balancing each other is that long term, the hashimoto's will take over and you will switch to being hypothyroid. That's lucky in a sense as you don't have to consider RAI or surgery to deal with the hyperthyroid aspect of your condition. That's the explanation I've received myself.

Thanks, that makes sense. Hopefully it won't take years to get to hypothyroid. My body has taken a bashing from the Graves.

It is not guaranteed that you will go hypothyroid, but there is a possibility. You will have to wait and see. In the meantime the important thing is to monitor your thyroid levels and ensure they stay within range with the methimazole.

Another odd person her hashimotoes 25 yrs TED 12 yrs and graves almost two yrs. Hashimotoes obviously didn’t succeed in destroying my thyroid well enough in all that time. As for lucky she should go through it before he speaks. It’s a rough ride to say the least

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