I began experiencing unwelcome thyroid symptoms at around 10 years of age and was only diagnosed with Graves’ disease at the age of 16 after many trips to the doctors where they were convinced my symptoms were caused by school pressures (though I knew it wasn’t). It was a frustrating time as I felt there was nothing I could do to convince doctors otherwise as well as it being mentally and physically challenging enough dealing with the onsets of palpitations and the anxieties that surged as a result of the hyperthyroidism at such a young age.
Researching to become informed about my diagnosis meant I could be aware of any changes in my symptoms- the main ones being; palpitations, feeling warmer/ hotter than usual, weight loss, and of course the anxiety when my hyperthyroidism would peak.
At 18 I was told I may experience difficulties conceiving a child naturally, and that as the older I got this could have additionally affected my chances. I hadn’t even considered having children so young till that point, but knew I always wanted at least 2. My partner and I spoke about this for a while and we decided to try for a baby, I was 21. We didn’t have to wait long. The first signs for me weren’t the morning sickness or increased tiredness, but my body becoming overwhelmed with pregnancy hormones 4 weeks in which triggered a major hyperthyroid episode- it turned out that pregnancy had caused my thyroid levels to spike-bearing in mind levels between 0.5-5 are considered normal, mine were 8 times over the upper normal range. A “thyroid storm” It was an incredibly scary time in intensive care. My heart had never raced so rapidly before, my blood pressure soared too. I thought that was it for me.
I was put on a high dose of Propylthiouracil to bring my TSH levels back to normal range and despite it taking an age to take affect, did eventually work and I was discharged from hospital. The baby scan showed there had been no harm to the embryo, a miracle in itself!
I had no issues with my second pregnancy, though I had been monitored closely throughout with regular blood tests.
At 24, my thyroid was still unable to be controlled with Propylthiouracil, I would always become overactive, and I’d had enough. My specialist offered me two options- radiotherapy to shut down my thyroid or a total thyroidectomy. I went for the second option for two reasons, I would have to isolate from my children if choosing radiotherapy and I knew there was always a possibility that my thyroid could start up again. I didn’t want that. I was told that I would be on levothyroxine for life and that I shouldn’t experience any symptoms after the operation.
On my 25th birthday I had a total thyroidectomy. I remember my surgeon and anaesthetist singing happy birthday to me as I “went under”.
Upon waking from my op I felt relieved, the worst part was over and the recovery could begin. The first few days were gradual, I took each day as it came. And as days went on the scarring on my neck faded.
It took a few months to find the “ideal” dose of levothyroxine to bring it within a normal range. Despite being within a normal TSH range, I did not have the energy I had prior to the op, so I was referred back to the specialist. After several appointments it became clear that my doctor and his team could not explain why I was feeling so fatigued, experiencing joint and muscle weaknesses and aches, had an extreme sensitivity to cold like never before amongst other symptoms. I think my body had been so used to the higher levels of thyroid hormones for years, and now I was going “cold turkey!”
Now 31, I still experience these symptoms, but now I feel my cognition has been impaired too, it takes a lot to concentrate on tasks and brain fog regularly occurs.
For me, this has felt like a solo-battle. I’ve been carrying this load for years now and have been guilty of comparing my personal achievements to those of my perfectly healthy peers. Why? They couldn’t possibly understand. Today I realised the need to connect with people who understand the struggles thyroid conditions bring. I look forward to receiving your responses.
J.
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Hi, I too, had a TT due to graves. Anti thyroid drugs never touched my levels. In fact, my tsh had been suppressed for the full 11 years and stayed suppressed for 6 months post op TT. Getting medicated adequately has been a rough road but I won’t give up. I hope you’re feeling and doing well.
I have wondered if the fact that levothyroxine contains only T4 has any bearing? I am considering asking my doctor to trial me on a combination of T3 & T4 as I have heard some patients have responded well to this.
Do you mind me asking what main symptoms you experience since having the TT?
Sorry that you, like so many members, have had such a rough time
After TT it’s extremely common to need the addition of small doses of T3 prescribed alongside levothyroxine
But before considering adding T3 it’s important to get FULL thyroid and vitamin testing done
Do you have any recent thyroid and vitamin results and ranges to add
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
What vitamin supplements are you currently taking
Ask GP to test vitamin levels
Do you always get same brand of levothyroxine
How much levothyroxine are you currently taking
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Strictly gluten free diet often helps or is essential for Graves patients too
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
20% Patients with no thyroid can not regain full health on just Levothyroxine
Thankyou for sharing your story. It feels very close to my story and I have recently been having some trouble with my doses and learning to how to feel normal.
I was diagnosed with Graves disease when I was 9 and had 7 years on carbimazole trying to stabilize my thyroid hoping that it would sort itself out during my teenage years. I am shocked that you weren't diagnosed sooner as hyperthyroidism really knocked me back during school. I was regularly swapping from the top maths class to the bottom maths class as some months I couldnt focus on anything. Most teachers thought I had ADHD as I would have manic episodes and couldnt focus to learn anything.
I was also told that being overactive during my childhood would prevent me from having children or create difficulties during pregnancy. It is refreshing to hear your story, even though you had rough time with your pregnancies that your babies are healthy and you have 2!
I had a total thyroidectomy at 16 when my body was rejecting carbimazole and I was going into a thyroid storm again. It was a very scary operation at that age and with my goiter so big and luckily I had a great surgeon.
I remember the first few weeks after feeling "normal" as I hadn't felt stable in my body since I was diagnosed. They put me on 125mcg levothyroxine and I have been on that ever since (now 28). As you can expect my new found freedom from regular doctors appointments and blood tests gave me a huge sense of freedom and I went travelling (with a huge supply of thyroxine) and also to university which meant swapping doctors regularly and noone really checking my results in any depth as I wasnt permanently anywhere for too long.
I settled in one place when I was 23 and have a job and lovely partner (maybe kids one day but trying to find out more about pregnancy and thyroid).
I got a new doctor at this point who never said anything about my thyroid results being anything other than normal. I have been to him with symptoms (muscle and joint pain, heart palpitations, general anxiety) over the past 2 years and he has never mentioned my thyroxine levels being off even after me questioning him.
I have recently been signed off work with stress and my current doctor wasnt supportive so I switched doctors. They did a thyroid check up and noticed the thyroxine in my system was higher than it should be. This is the first time in 12 years any doctor has said that my dose was too high. I had no reason to question it as I have no concept of what "normal" should feel like as an adult and depended on results my whole life to tell me if I am feeling normal or not.
My dose has been reduced to 100mcg for which I am feeling more calm and alot of my anxiety and stress has reduced massively with the drop in my dose. However, like you I am now feeling symptoms I am unfamiliar with as have always been overactive. My hair is falling out more, I am prone to cold too and find it hard to warm up whereas before i would be the radiator in the bed. I also feel more fatigued than usual but compared to getting up everyday feeling full of anxiety (likely linked to hyperthyroid) and not having to deal with that now everyday it's much better.
I have always compared myself to normal peers which is exhausting and noone prepared me when I was a child for the mental health side of thyroid. This was especially true 2 months after my op I took my GCSEs and had no clue how I had done as I was adjusting to a new dose and a new normal. Luckily I did better than expected and this was confirmation enough for me and doctors that I was on a good dose. Ever since then I have pushed myself academically to prove to others and myself that having thyroid issue doesnt hold me back and that I gave it my best shot. However this is exhausting and ultimately has led me to complete burnout (partly due to job and covid, not all thyroid related).
I am waiting for my bloods to cycle before I have my first blood test on my new dose of 100mcg. I am hoping that I fall within the normal range. It is hard knowing what normal feels like and I am trying not compare myself to the past 12 years of being stable and slightly overactive. I have never really been underactive so am unfamiliar with the symptoms.
How did you find your perfect dose after your TT? How long did it take you?
It was great reading your story as like you it is hard to connect with family and friends over thyroid issues. I feel as though you have had a similar experience to me with Graves disease at a young age.
Make sure to get blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you are under medicated
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
After thyroidectomy many, many people find they will need to have small dose T3 prescribed alongside levothyroxine
Essential to maintain OPTIMAL vitamin levels
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Bloods should be retested 6-8 weeks after any dose or brand change in levothyroxine
Can I please suggest you start reading up on the Elaine Moore Graves Disease Foundation website :
We are looking at an autoimmune disease that is for life and we need to start learning what we can do to help ourselves as it does seem highly likely we will not be understood or helped by the mainstream medical team who do not understand Graves Disease.
The NHS believe by " killing off " this major gland means we are " sorted " and good to go - and if you are being monitored and dosed by just a TSH blood test which I was for too many years this actually means diddly squat.
With Graves you need to be dosed and monitored on T3 and T4 blood test results with the intention to bring both these vital, essential hormones into high enough levels in the range to give you back your wellness.
I felt it was about time I reached out to people. Sorry to hear you’ve been experiencing thyroid related issues recently, I can really empathise with you about that.
It’s interesting to hear how our thyroid conditions affecting us as children. I too found focussing in school a challenge.
I made the decision to have children young as I didn’t want to be faced with the possibility that it may not have been an option for me had I waited till now (or later) that’s not to say that you yourself would be faced with the same challenge, our bodies are all different after all.
With regard to “normal” thyroid levels, doctors are in my experience and opinion all too focussed on the numbers and not the symptoms that the individual patient is experiencing, hence why I keep a spare 25mcg of levothyroxine when I need a “boost”
This time of year is particularly problematic, my hands and feet are like ice blocks and I keep myself warm with hot water bottles and plenty of herbal tea!
I’m really pleased you went to university, I’ve actually taken time out from working within schools to undertake an undergraduate degree as I didn’t want to go around the time my peers were going and my health wasn’t as good back then as it is now. But I’m still a long way off being where I want to be. Did you find that without a thyroid you experienced cognitive challenges such as brain fog... memory loss? This is one of my major issues currently and I’d really appreciate any advice you may have.
I wouldn’t say I’m on what you call a “perfect dose” but I currently seem to fall within the normal range and I’ll take that over thyroid storms any day! It took about 6 months to get to that stage though.
I agree- our experiences have their similarities, and at least we’re not the only ones!
A fully functioning working thyroid would be supporting you on a daily basis daily with trace elements of T1, T2, and calcitonin plus approximately a measurable dose of T3 and T4 said to be about 100 T4 + 10 T3.
T4 is a storage hormone and needs to be converted by your body into T3 .
T3 is the active hormone that the body runs on, it is said to be about 4 times more powerful than T4 with the average person using about 50 T3 daily just to function.
Personally I just feel if there has been a medical invention and the thyroid surgically removed or ablated and burnt out in situ with RAI that both T4 - Levothyroxine + T3 - Liothyronine should be on the patient's prescription for if, and probably when both these vital thyroid hormones will be needed to restore balance in both T3 and T4 levels, and restore the patients well being.
An ideal conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 :
Simply divide your latest T3 blood test result ( if you have one ) into your T4 blood test result ( if you have one ) and what do you get ?
Most people people feel more well when this ratio is around / below 4 ?
Your conversion can be compromised if your core strength vitamins and minerals are not optimal, so it is also necessary to test for ferritin, folate, B12 and vitamin D and these will need to be maintained at optimal levels and not just somewhere in a NHS range.
Even with optimal vitamins and minerals you will see from the above that you have lost your own production of T3 which hasn't been replaced and this represents approximately some 20% of your overall wellbeing and it's inevitable, over time, that your body's ability to cope and compensate is going to cause other health issues.
Currently T3 needs to be prescribed by an endocrinologist, so your doctor may refer you.
BUT if you live in an area where the CCG have restricted new prescriptions of T3 you might have trouble getting Liothyronine on the NHS.
If you go into - openprescrbing - analyse - you can see by CCG area and also surgery if T3 is being prescribe and that if your surgery maybe supportive or not, it is a postcode lottery and very far from an ideal situation for many of us.
It will make sense to contact Thyroid uk, the charity who support this amazing forum first and ask for the list of " sympathetic doctors/endos ' and there maybe someone there who you can be referred to through the NHS.
I'm with Graves Disease and post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism. I became very unwell about 8 years on from RAI thyroid ablation and now self medicate as I was refused both NDT and T3 through my doctor and NHS endocrinologist.
Thank you SD I’ll have a look for my most recent blood tests later today... I currently take a-z vitamins every other day so there isn’t too much reaction with my levothyroxine, which generally is the same brand each month. I take 100mcg daily, every morning 2 hours before I have breakfast or any drinks.
I haven’t previously been asked to leave 24hours before having my bloods, but will give it a try at my next appointment.
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