Hello all, my name is Oli, I am a 26 year old male in Southampton who got diagnosed with hyperthyroidism as a result of a thyrotoxic multi-nodular goitre back in July 2018.
Apologies in advance for the lengthy post, but to start with I'd like to give a sincere thank you to everyone who is volunteering their time to help each other out in this forum. I have been browsing for a few days, and wow - what an education, people are doing incredible things here to support each other so thank you (I work in healthcare myself and think this is just brilliant!).
The cliffnote of why I am posting is that I am 5.5 months post radioactive iodine treatment, and my life is currently an absolute shambles as a result - joy! A brief history:
Over many years I believe, I suffered increasingly worsening symptoms of hyperthyroidism - light headed/sweats/anxiety/heart palpitations, prescribed propranolol as symptom control, until 2018 where these symptoms were so bad I finally got thoroughly examined, including bloods which revealed the high FT4 of 24 in May then 31.4 when retested in July. Carbimazole prescribed 15mg od, which did help symptoms slowly.
Further scans and blood tests underwent over the next year, until graves was ruled out due to antibodies testing negative, and the scans landed at the diagnosis of toxic multi-nodular goitre. My carbimazole dose was constantly being titrated up and down over this period due to fluctuating blood results. I didn't feel great but it was manageable.
March 2019 my endocrinologist offered the options of thyroidectomy or RAI (radioactive iodine therapy) to treat my overactive thyroid, as it was not responding well to carbimazole and improving on its own. Around this time also I was experiencing fluctuating symptoms of sex hormone / testosterone issues such as low libido and hypogonadism. My testosterone gave a normal reading (17.4nmol/L) so my endo dismissed this as psychological.
I weighed up the options of surgery Vs RAI and went through with RAI in July 2019 as it is less invasive than surgery and seemed the better option on balance.
The first few months post radiation were not that bad symptomatically. I was getting some mood changes but these were fairly slow acting. As the radiation destroys the thyroid tissue, bit by bit, it releases surges of hormone sending the levels up and down. I had symptoms of hypo at times such as being very cold, fatigued, and itchy dry skin. Also I had symptoms of hyper such as anxiety, sweating, and racing heart. After a particularly bad hypo patch,I had a couple of weeks I believe in October/November time where I felt AMAZING. I think this was around when I first started producing TSH. Everything was balanced, no knot in my stomach, lots of energy, and perfect sexual functioning for once.
This didn't last long, and ever since I've been back to massive and very sudden mood swings (multiple changes throughout the day sometimes). Feeling exhausted and suicidal to then feeling okay, to then a little bit anxious yet energised, so on and so forth. Absolutely no predictions or triggers for the change.
Currently my life is fairly unlivable, and I am suffering huge socially especially as these moods affect my personality in a big way. More often than not I am veering towards suicidal, depressed, and exhausted, with occasional bouts of feeling euthyroid, and mildly hyperthyroid. My endo has simply written to me that my levels are within range so any mood swings are unlikely thyroid related - incredibly infuriating.
I KNOW these moods and other symptoms are biochemical rather than psychosomatic. I recently got a thriva home blood test kit and tested myself during one of my lowish moods - which nearly always coincides with my fluctuating symptoms of low testosterone (fatigue, depression, no libido, erectile dysfunction and shrunken penis and testes).
Interestingly my results showed that my testosterone and SHBG IS low (to clinically significant level as it is right on the border of the lower range). Now I am wondering if my symptoms are primarily due to thyroid dysfunction, or due to sex hormone dysfunction which could be secondary to thyroid dysfunction. The thyroid could be interfering heavily with my hypothalamic–pituitary–gonadal axis and I am wondering if anybody has any insight on this?
I have a GP appointment booked for tomorrow morning and I am hoping to go into it equipped as well as possible to get the most out of it.
Could my symptoms be simply my system still readjusting to the tail end of the radio-iodine (6 months is when it is meant to be pretty much all out of the system)?
Could I benefit from any hormone supplementation?
Is my TSH too high?
Could seeking treatment for low testosterone improve things? I think my gondotropins are certainly low the majority of the time based on symptoms.
This illness has gotten me down so much, and when physiologically I am put into a depression from my hormone levels, it makes it so challenging to be pro-active when managing it. It has been an isolating experience where my best friends have no concept of understanding what I'm going through, and I don't want to bore them with constant moaning r.e my health. I have so much I want to do in life, train as a paramedic, travel the world, form relationships etc etc, and I feel like this illness has become a dark, insurmountable cloud that will never let me do any of those things.
Thank you so much if you have read this far, and thank you in advance for anybody with any support/advice, you are all fantastic. Attached is a photo of a badly drawn table of all the blood results I am aware of!
Written by
Sybian-Deathstar
To view profiles and participate in discussions please or .
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
You may be able to use this as leverage to get GP to increase dose Levothyroxine
Do you always get same brand of Levothyroxine?
What vitamin supplements do you currently take?
Ask GP to test ferritin and folate tested, plus cholesterol test
(high cholesterol linked to being hypothyroid, so is good indicator of needing dose increase in Levothyroxine)
Have you had BOTH TPO and TG antibodies tested?
You will almost certainly need to get full Thyroid antibodies testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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
You can test just Thyroid antibodies
Low testosterone is likely symptom of being hypothyroid
I am not taking any medication at all currently! I know it is quite routine to take levothyroxine at some point post RAI if too much thyroid tissue is destroyed. I think I will get the thyroid antibodies tested that seems like a good idea.
I take vitamin D, and vitamin B complex, and biotin 1000ug daily. I have learnt recently that I should stop biotin in advance of blood tests as it effects TSH readings.
Does it look like I should be receiving levo supplementation?
No I didn’t, I will stop these before a week before my next tests from now on. I have taken biotin and vit B complex on and off for a few years now (since well before my diagnosis)
You might find it easier to keep records of your results if you downloaded one of the free products which do the same job as Microsoft Office. It would allow you to keep records in spreadsheets.
This is one of the most popular ones, and is the one I use :
I haven't researched which one is best in years, so you'll have to do your own research and make your own choice.
I should point out that I have a full-sized desktop PC running Windows 10, I don't have a phone or small tablet or any other small gadget. Running an MSOffice-type program on a small gadget probably wouldn't be very user-friendly. But then I've never personally tried it.
As already established the above blood test results may not be accurate.
I would have thought however that you will probably need some thyroid hormone replacement.
It is essential that you are dosed and monitored on T3 and T4 blood test results, and not solely on a TSH blood test result, as your feedback loop, the hypothalamic-pituitary-thyroid axis is now broken giving unreliable TSH readings.
Drinking the RAI has broken the feedback loop
RAI slowly burns out the thyroid gland in situ.
RAI also is taken up by other glands and organs within the body.
RAI can " trash " your vitamins and minerals, and without optimum ferritin, folate, B12 and vitamin D no thyroid hormone either your own or that supplemented will work effectively.
RAI can " trash " your immune system.
RAI induced hypothyroidism is known to cause depression.
RAI induced hypothyroidism is more difficult to medicate.
RAI is known to " trigger " fibromyalgia type symptoms.
I am with Graves Disease diagnosed in 2003 and I had the RAI treatment in 2005 to ablate my thyroid. I became very unwell some 6 years ago now, and thanks to this amazing site I've managed to get back on track as best I can.
I fully understand and recognise many of the symptoms you detail.
The thyroid is a major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
There is a lot to understand and you might like to take a look at the following book :-
Written by a doctor who has himself, hypothyroidism it's an easy, sometimes funny read, and is one of my " goto" books -
Your Thyroid and How To Keep It Healthy by Barry Durrant-Peatfield.
Thank you for taking the time to read my post and respond, it really does mean the world to me. And thank you for the wonderful, helpful response. I feel in myself that especially lately, my baseline feeling is that of being hypothyroid, with occasional spurts of euthyroid and hyperthyroid levels.
If this is the case, I am guessing the only way my doctor will prescribe any supplemental Levo will be if my bloods support this picture, aka TSH above range and T4 or T3 below range?
This is such a minefield and bizarre part of my life now that I never anticipated I would have to navigate, thanks again for your help
Yes, none of us expect to be dealing with our own health issues in this way but this is an amazing site and with some reading up you will find your way back to wellness.
If your doctor will not run all the blood tests you can get them done privately, and then start a new post with the results plus the ranges for people better able than me to give considered opinion.
I'm sorry if my first reply was a bit all doom and gloom, but I do deeply regret this RAI treatment and only wish I knew of this site years ago, rather than learning of my situation back to front.
I have read your profile learning about your health situation - I am so sorry you have had such an awful time with all of this. Thanks for using your experience to help inform people like me who (it seems) are at the beginning of their journey in managing their thyroid disease. I feel utterly abandoned by the NHS (my employer too!) after the RAI treatment earlier this year, and lately every day has become what honestly feels like a life and death battle (sorry about the melodrama but its true haha!).
How are you feeling now? With adequate ferritin and levothyroxine supplementation are you feeling well in yourself? I hope so!
I'm doing a lot better now, thank you, and am self medicating as I am unable to access the full thyroid hormone replacement I need from the NHS.
My situation isn't yours, I have Graves Disease and that comes with it's own set of issues.
So no comparing, or making assumptions, we are all unique and on our own thyroid journeys and we learn from and with each other and you will recover your equilibrium and the man you were and still are.
Take good care, and start reading up, since it's a massive learning curve, but so necessary to know so you can ensure you get back on the right track sooner rather than later.
Very happy to hear you are doing better now! That is encouraging Thank you for the book recommendation, and thank you for the kind, caring words. This is a very dark time for me at the moment. What makes me happiest in life is helping others (not because I'm a good person, but because it makes me feel good). Conquering this hiccup and finding the best management for this condition is the only way I can fulfill the life of helping others which I desperately want to fulfil. Sentimental rubbish I know but that's the magic of the internet, can say what I feel without that obligatory wave of shame that happens in real life!!
You should join the group because the guy who runs it(he's in the US) knows all about your symptoms because he's had them! including the low testosterone.
Thanks very much butterflies - really grateful for the suggestion. Have applied to join ! It’s such a relief to know other people have suffered in a similar fashion 👍
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
thanks !
I'm new here... How can I get T3 test?
Introduction - I'm new here
Help please getting quite desperate
I'm new here...
I'm new here
