Have you been told that you're hyperthyroid, and / or been told that you need to have your thyroid removed – but you're not convinced because your symptoms don't seem to match the diagnosis?
That's exactly where I was nine years ago – and I want to urge you to follow your instincts !
To put it simply I was diagnosed with hyperthyroidism back in 2015, but it seemed very odd to me at the time as my actual symptoms were the opposite of the usual for this condition.
I had no energy, low mood, was gaining weight and was struggling to keep my job.
Not knowing what to do and following medical advice I spent a year on anti-thyroid medication, but when they paused the medication to see what happened the thyroid hormone levels went back up again and so the pressure began for me to have 'definitive treatment' - either radiotherapy or a thyroidectomy.
Still feeling unhappy about all of this I refused, stayed on a minimum dose of anti-thyroid medication while I did some research and thanks to the amazing resources on this forum I learned lots about the auto-immune aspect of thyroid disorders.
With a nutritionist's help I changed my diet (cutting out foods that were affecting me) and began working to heal my stomach lining. Blood tests eventually showed that my thyroid levels had stopped fluctuating although I still had poor sleep, a lack of energy and weight gain to deal with.
However, I was still being regularly urged by the hospital to get booked in for the operation – they actually told me I was just 'delaying the inevitable' and that I risked having a major attack of out-of-control heart-rate which could kill me.
Last year, the consultant suggested that as I'd been stable for some months we should try stopping the medication again, to see what happens.
Shortly after that, I got a curt letter informing me that as I did not want to follow their course of treatment (i.e consent to surgery) there was nothing they could do for me and I was being referred back to my GP.
The GP's only comment was that they wouldn't be able to provide blood tests as often as I'd been having (too expensive) and as it turned out, they couldn't get all three tests (T4/T3 and TSH) that I'd been used to having, which meant I'd only have a TSH reading every six months.
So, it seemed I was on my own with this now.
Some months later (levels of thyroid hormone still within range) I've just stumbled on the fact that there are two hormones produced in the brain called dopamine and serotonin. They work together to balance various processes in the body – but if (as quite often happens) they become imbalanced they can cause havoc – most importantly here this can lead to thyroid issues which can look like hyperthyroidism even though it isn't!
And, strangely, the range of symptoms that can occur were an exact match for the symptoms I was actually experiencing since the beginning of all this – the ones which seemed opposite to their pronouncement of hyperthyroid ! This was a huge moment for me - all those years of digging my heels in and refusing the operation were not in vain.
After more research I decided that the most promising supplement to help balance these two hormones would be ginkgo biloba and I've now been taking this for three weeks.
From the first week I've noticed consistent improvements in my general energy levels and I'm sleeping better than I have in years. I've been working for a couple of years to resolve leaky gut issues (bone broth, water kefir etc) and so I'm now even planning to try re-introducing potatoes, tomatoes and beans to my diet soon – I can't tell you how much I've missed these !
I'm feeling very optimistic that I've finally found a way back to better health and I'm relieved and delighted that I stuck to my convictions and didn't agree to the removal of my thyroid.
So, my message is: if you're in any doubt about a diagnosis of hyperthyroid please don't immediately agree to 'definitive treatment' options but take some time to look at all of your options first. Your thyroid gland is a major player in every one of your body's processes – it's definitely worth keeping.
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Indiethinker
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I also found doctors keen to progress to definitive treatment & I also refused to be rushed.
I was referred back to GP when I repeated delayed RAI. The GP would test every 3 months, but I would have to remind them. Your lack of care you describe was quite neglectful.
What was the cause of your hyper? Transient hyper common in early stages of autoimmune thyroiditis. Graves can remain longer but can go into remission if levels stable and time allows.
Symptoms are extremely varied & can overlap, I was hyper but had many typical hypo symptoms.
Ive not heard that dopamine and serotonin can *lead* to thyroid issues. Do you have a reference?
I’d would have possibly figured it was the other way around with thyroid disfunction prehaps impacting on the brain neurotransmitters?
There isn’t a routine test for dopamine and serotonin so most of the time this is not investigated.
I’d like to understand the part where you write “this can lead to thyroid issue which can look like hyperthyroidism even though it isn’t”.
We do hear of doctors starting antithyroid based on low TSH. Commencing antithyroid for sub clinical or transient hyperthyroidism is not right approach.
It's interesting that your experience of being pressured was so similar – it's hard to stand your ground when you're in unfamiliar territory and not feeling at your mental best, isn't it? I appreciate your courage!
I didn't even know what hyperthyroidism was at the beginning. I originally had a shoulder joint problem (repetitive strain) shortly followed by achilles tendon injury (standing all day at work).
When my GP announced the diagnosis, I asked him what that meant and he reeled off the classic list of hyper symptoms. This baffled me because absolutely none of it described how I felt.
I was never told the cause – I did ask that question early on but the reply was a vague 'we can never know for sure'.
I have turned this problem around in my mind so many times, looked at so many possible factors which could have led me here. I did look at the possibility of the thyroid somehow affecting brain chemicals, but it has always felt to me like my thyroid was a bystander in all of this, caught in the crossfire. It seemed to be the one symptom which didn't fit in with all the rest, yet it was the one that the doctors seized on.
A couple of years later I asked the consultant if she thought I had Grave's disease; she was sure that I didn't. However I saw 3 or 4 different consultants over the years and another one casually referred to 'my Graves' in the conversation. I asked if this was now definite (because I thankfully had none of the unpleasant symptoms) and he backtracked, saying it could be 'going that way' .
I once asked for a further blood tests for raised auto-immune factors like immunoglobulins, hoping it would give me some definite proof, but they said this wasn't done within that health authority.
I discovered the dopamine/serotonin link by accident because I'd recently been trying to resolve another issue which I'd thought was unrelated:
I'd been having breast pain for some time - I was sure it wasn't anything cancerous as I'd been through that in my 30's (and I have a suspicion that the effect of the chemo may be a factor in all of this subsequent ill-health). I'd described this pain to my husband as the engorged feeling I used to get back when I was breastfeeding (20 years ago), so I followed a hunch and researched the hormone pathway relating to that – and found out about prolactin.
Prolactin has several roles apart from milk production; if it becomes abnormally high prolactin can disregulate the thymus gland causing T-cells to attack healthy cells – resulting in symptoms which mimic leaky gut, thyroiditis etc.
Prolactin (PRL) has a recognized immune-stimulatory effect, specially inhibiting the negative selection of autoreactive B lymphocytes, promoting autoimmunity. In accordance, hyperprolactinemia has been associated with several autoimmune diseases, influencing its pathogenesis. Although the mechanisms involving this interaction are not completely understood, it has been documented that PRL can influence the communication and regulation of immune cells.
So my next search was how to lower prolactin levels and this is where dopamine came in because one of dopamine's jobs is to regulate prolactin. If prolactin is high for whatever reason, it suggests that dopamine is low – which would lead to low energy, low mood etc (which were major symptoms for me).
Then, as mentioned, dopamine works with serotonin - when one is up the other is down - so in this situation we'd also expect serotonin to be heightened.
Serotonin imbalance has been linked to depression, low mood, poor sleep and appetite (I could tick all of these). High serotonin can also lead to heart palpitations – which I actually did experience after they first stopped my antithyroid medication, but which they attributed to hyperthyroid.
So strangely, trying to resolve the breast pain unlocked a whole different scenario which made far more sense to me than the one the doctors had settled on.
I should add that I did read up on all of ginkgo biloba's effects on the body before I went ahead; there were no concerns about side effects as I'm not on any medication and the improvements I've had so far have been massively better than anything in the last 8 years while I was just stuck on anti-thyroid meds.
As with all of the last decade or so, I'm just feeling my way through all of this, learning as I go.
Thank you for this post - I am one of those who was encouraged to have RAI thyroid ablation from the onset of my hospital appointments and in a state of shock trusted and followed the mainstream medical approach though my only new symptoms that took me to the doctor in the first place was insomnia - and I certainly did not appear to match the Graves profile.
Becoming so much more ill some years post RAI - I found this forum and Elaine Moore's website and books elaine-moore.com and started trying to understand what was going on as I was getting nowhere through the conventional channels and referred to as a conundrum by my doctor.
I now realise I have been undiagnosed hypothyroid since a child - never got a diagnosis - though tried the mainstream medical route several times - and just lived my life - as you do - 3 months prior to my diagnosis of Graves Disease I was attacked by a man I employed as my assistant manager - and believe this incident the cause of the insomnia and all that happened next.
Anyway - I commend you for putting so much effort into understanding your own body :
You can always get the appropriate blood tests run yourself - Thyroid uk - the charity who supports this forum thyroiduk.org - have a website page detailing Private blood test companies you work directly with and forum members on here can read any blood tests for you and advise on your next best steps.
Interestingly - the most recent research is suggesting the longer the patient stays on the AT drug the better the long term outlook for the patient -
and as for RAI thyroid ablation I just wish it was removed as ' a therapy ' in what we presume to be a health care setting as this sends out the totally wrong message to those who are ill and unaware and also the RAI leaflets given out at the hospital have not been updated and very economical with the truth about this ' quick fix ' treatment.
I am so saddened to hear all that you've been through, it is so common these days that we seek help for a dis-ease of some kind and are just thrust onto the conveyor belt of quick-fix modern medicine which just treats symptoms.
In the late 1990's I went through cancer treatment which again was abrupt, heavy-handed and so shockingly badly organised (several times I had check the clipboard and object to one or other of the proposed cocktail of drugs because I'd previously had a bad reaction). This didn't inspire faith in the system. I guess this had made me more cautious about medical practice generally.
I did look into private blood tests, but being unemployed at the time (I ultimately lost my job as it took months to get through the waiting list, then start medication, then waiting for 3monthly blood test results) I just couldn't afford the fees.
Thank you for the info on prolonged AT drug use – it is interesting because at the beginning I was sternly warned that this type of drug was only for short-term use, that it would lead to liver damage with prolonged use, presumably so that it would herd me into accepting the next step of ablation / surgery.
Astonishingly, a couple of years later after moving house and changing consultant I was told that it was no problem, I could opt to stay on AT drugs indefinitely if I wished.
I agree wholeheartedly with your sentiments about how RAI is presented, there is indeed much that is omitted from the information given to patients, in order to steer them in the preferred direction.
It was a lifeline to me to find this forum and have a wider perspective on it all along with a huge raft of support and sensible information !
I hope you're well enough to enjoy life, despite all that you've been through.
Yes, back in 2004/5 when I was 57 there was only a library to try and read further on the subject and being dyslexic not a place I frequented for myself - let alone attempt to come out of my comfort zone and frequent a medical textbook.
Having purchased several laptops for my nieces my turn came in 2015 and thank goodness I too found this forum -
I now self medicate Natural Desiccated Thyroid and haven't been to the doctor since 2017/18 as it all became too stressful to be and stay well -
thankfully I seem to be better able looking after myself and ignoring my TSH - and monitor myself on my T3 reading and ensuring my core strength vitamins and minerals are maintained at optimal levels.
congratulations! My gut feeling was opposite to yours , that I had to have my sub clinically hyperactive thyroid removed but both the endocrinologist and the surgeon were refusing. Eventually, when my thyroid grew internally so big that I could not swallow ( result of Carbimazole J think) I had the operation and my life improved enormousl, better sleep zbc much better digestion . So, yes, trust your instinct! I, too, started using Gingko biloba to thin my blood ( had very high platelets and two thalamic strokes in a space of 3 years from which I recovered ). My strokes must have been thyroid related. I was put on synthetic blood thinners that were making me very ill and when I changed to Gingko biloba I started to feel much better . I did not know that Gingko also regulates brain hormonal balance, so, thank you for that that. It was a lonely journey, with hospital consultants washing their hands of me and predicting further strokes! I am now not only on Gingko biloba but also Armour thyroid plus vitamins , much reduced bread consumption and gentle daily exercises . My blood test results look fantastic and I finally got my life back! Yes , must trust own intuition and help yourself, don’t blindly trust doctors!
What an inspirational post ! Congratulations on finding your way through the maze so successfully, it is indeed a lonely and confusing one at times. It is infuriating when you tell them how you feel only to have them tell you you're mistaken, or worse that you're imagining it.
For some years I was on routine blood tests and a follow up phone call by a 'specialist nurse'. On one occasion I was trying to explain how low in energy and mood I felt, only to have her cut across me saying “Right, well we need to get you on some HRT, that will deal with it” I was appalled that they would give out such things like smarties – and I refused that course of action.
When I was born we had a family GP who actually delivered me and my sister (at home); he knew all of my family, knew our lifestyle, our past history etc so when we occasionally turned up at his surgery he had all of that information to help him understand the possible underlying cause of our current ailment. That's what's missing these days, that sense of trust and familiarity.
Even if you can score an actual doctor appointment it's never the same one, some times even an agency doctor who knows they'll not be there next month, so no real incentive to investigate anything.
Thank you for taking the time to share your experience, hopefully it will help many other people on here too !
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