Where can I turn to for help? Thyroidectomy, bereavement, mental health, physical health?
Hi everyone - I have posted before about my thyroid issues.
I’m looking for some advice on where I can turn to for help - I’m pretty desperate.
This year has been terrible for me and I really need help.
I was diagnosed with overactive thyroid in Feb this year but think l've had symptoms for at least maybe a year before that..... maybe even years before at times? Who knows!
I became really ill with the symptoms, pretty much bedbound. High heart rate when trying to do anything, breathless, dizzy, severe fatigued, stomach problems, nausea, severe depression and anxiety. I genuinely thought I was dying.
The anti thyroid meds didn't work for me - they affected my liver and I felt terrible on them! So had total thyroidectomy in July.
A couple of weeks before the op, I’d been staying with my parents because of how unwell I’d been feeling. Unfortunately my mum because unwell suddenly, struggling to breathe and I had to call an ambulance. She was taken to hospital.
It turned out that she was very ill. I went ahead with the surgery and my mum unfortunately passed away the next day.
Struggling to get over everything - how I have this illness and l've had to remove an organ. Struggling with the fact I have to take Levo for life, unsure if it's working properly - levels are still stabilising I think? Scared of it all and facing life without a thyroid and waiting for another illness to crop up
Struggling to come to terms with losing my mum.
I feel like something bad is happening to me everyday. My mind feels terrible. I’m not sure which is thyroid related and which is mental health. I spend a lot of my days feeling like I’m dying - it’s awful
I have had crisis team involvement but they’ve now discharged me back to my local mental health team.
my ferritin, vit D, b12 are in good range (upper ) but my folate was low (low in range) so I’ve been taking supplements (methyl folate)
Post thyroidectomy, I was really worried that I may not be converting but my thyroid test shows my t3 has recovered somewhat?
30 Sept:
TSH 0.28
T4 - 14.5 (9.1 - 17.6)
T3 - 4 (2.4 - 6)
Help and advice appreciated
Written by
Heybella
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I have reached out to my endo department and GP on a number of occasions. Even emailed them begging for help - but have not received a reply.
I left a voicemail for the endo nurse who did ring me back - but was advised that they usually don’t follow up after thyroidectomy and would be referred back to GP.
So I’m left dreading every single day.
I do have T3 - but I didn’t want to try that until I really needed to.
Gosh Heybella you really have had a tough time with everything haven’t you!
Have you looked into Cruse Bereavement Support cruse.org.uk
They might be able to give you support while coping with the loss of your mum.
As for your thyroid unfortunately I think what the nurse said was probably correct, after a thyroidectomy you are discharged into the care of your GP. I think it can take a while to get sorted out but it sounds like you need more help and support to get there than you are getting at the moment and I don’t think losing your mum will be helping - that being such a stressful event on its own.
Hopefully someone in your situation will come along soon and give you some more helpful suggestions.
If it’s any help my sister in law had her thyroid removed when she was in her twenties and had just had a baby. They left her for a year thinking it was ‘just a cyst.’ Only it wasn’t, it was malignant.
She went on to do a degree and teach maths, her hobbies were mountain climbing, hill walking, camping, mountain biking, sailing, travel - she is a very energetic person and once she was settled down she led a very good life.
So don’t give up - even if things feel really terrible at the moment life can be good for you again.
If you need to speak to someone and can’t get your doctor or someone you know then call The Samaritans, they will listen to you samaritans.org
As Buddy 195 says, keep in touch and keep posting.
It is, you’ve had such a lot happen to you. Each thing is massive on its own, put them all together and you feel like you do.
This is an amazing group - I joined when I had Graves disease (still got my thyroid though) way back in 2012 and my first question was ‘Will I ever feel normal again?’ Everyone said I would and sure enough they were right but this wonderful group got me through it. (((Big hugs)))
Heybella, I’m in the US and not sure about resources.
But wanted to reply with a virtual hug and a heartfelt, genuine “it’s going to be ok.” And that’s not an empty phrase.
I’ve taken the past 2 years to come to terms with my thyroid issues (as most of us do, on this journey.) In the beginning, I would always say that it felt like I was dying, that I was 90 years old, that something was wrong, I just didn’t know what.
Managing this disease goes from easy to hard across the bunch of us. But it’s made immeasurably harder by the fact that our GPs are not always knowledgeable or helpful.
So for me - it was this forum and the exceedingly knowledgeable, logical, smart and helpful people on it that saved my (quality of) life. (Also don’t forget that we have a chronic illness. Not a terminal illness. On days I’m feeling bad, this does help me to remember.)
It can indeed take a couple years to get back to functioning… but with this forum at least I knew that I was on the right track. I was not feeling around in the dark completely confused and hopeless. There are ups and downs when it’s done right. But finding patience is easier when you know you’re doing the right thing and it’s just a matter of time.
In my early days I found reading this forum the best support I could find. Everyone here gets it, been there done that, and I could find so much comfort and shared experience when I had nowhere else to turn.
Even this morning I was just thinking to myself - look what life expects of me when I have this limiting chronic illness! My job, my family, a kid in college and sick elderly parents who also need me.
It is true we all mourn for the things we have lost, but I also want to say that after one year following this forum’s sound guidance, I am functioning again. The path is a winding one, but this forum is full of success stories. And also it’s full of people who have stopped in, gotten better, and roll off the forum because they are living their lives!
I’m not sure you needed this particular pep talk… but just wanted to reply and share that I know how you feel, been dealing with serious family health issues also, and have been there and back. That you will get smarter about your own health, that you will find strength and patience you never knew you had, and that it gets better.
I am so sorry you are having everything hit at once. At the very least all of us are here for you.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings / ranges and not a TSH - especially since you have Graves and had a thyroidectomy.
In Graves the TSH is a very unreliable measure as we can have antibodies ' stuck on ' our TSH receptor sites for years which will distort TSH readings giving ' false low ' readings.
Having had a thyroidectomy there is now no thyroid in situ to worry about - you can't become or go ' hyper ' ever again but you could be wrongly medicated causing uncomfortable symptoms.
We generally feel best when the T4 is up in the top quadrant of its range at around 80% through its range with the T3 tucking in just behind the T4 at around 70% through its range.
So currently your T4 is at around 64% with your T3 at around 44% -
So, i think the first step is a further increase in T4 - Levothyroxine with a review after this increase at 8 weeks - just to see then your T3 and T4 then sit in the ranges.
I'm guessing your TSH is just in the range and this must not be given as the excuse that you can't have a dose increase in T4 - Levothyroxine.
The accepted T3/T4 conversion ratio ( once T4 is up in the top quadrant of its range ) is said to be 1 / 3.50 - 4.50 - T3/T4 - with most people feeling at their best when they come in this conversion ratio at 4 or under.
Put another way - with the T3 / T4 at around 1/4 ratio - meaning if I divide your T4 reading by your T3 reading I'm getting your current at 3.60 - but your T4 isn't high enough in the range yet to know how well you convert T4 into T3.
No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal -
for reference I now aim for ferritin at around 100 - folate 20 - active B12 - 125 ( serum B12 500 ++ ) and vitamin D at around 125.
The thyroid is a major gland responsible for full body synchronisation encompassing your physical, mental, emotional. psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. -
T4 is a pro-hormone and needs to be converted in the body into T3 which is the active hormone that runs the body and said to be around 4 times more powerfulthan T4.
Some people can get by on T4 only :
Others find that at some point in time T4 doesn't seem to work as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they are able to restore vital T3/T4 thyroidal hormone balance and feel better.
Others can't tolerate and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst others find Natural Desiccated Thyroid suits them best which is the original treatment for hypothyroidism and derived from pig thyroids, dried and ground down into tablets and referred to as grains which each grain containing all the same known hormones as that of the human thyroid gland with a declared content of T3 and T4 in each grain / tablet.
So that's it, I think, in a nutshell - and suggest the first step is getting an increase in T4 but try and stay under the hospital endo team- as if you need further support in the form of T3 - you'll have to be referred back anyway - as primary care doctors are no longer able to initiate any treatments options other than Levothyroxine.
Getting NDT on the NHS is now virtually impossible.
If you go into openprescribing.net - you have a window into both your surgery and ICB area as to how supportive they are in prescribing T3 - compared to other surgeries and ICB areas - as it has become something of a post code lottery -
just enter LIothyronine as the drug:
but we have no way of knowing if ' new patients to T3 ' are encouraged and in these figures or ' seen and treated ' any differently.
I have Teva Levo mainly and take alternate days 75mcg / 100mcg.
I weigh around 62kg I think!
The test was done morning & my last Levo dose was the morning prior (so around 24 hours). I do usually take it at bedtime but moved around for the benefit of the test after following your advice 😊
I was recently recommended Cruse for bereavement support by a lovely personal counsellor, as years on I’m still struggling. There was a waiting list but no harm putting down for it. When you get hit from several directions at once it’s hard and you have to chip away at them all.
My sister is a Cruse Counsellor who manly helps children who have lost a parent. Before she retired from the NHS she was an A & E Nurse. These counsellors could help you
My sisters were all mistreated as children and therefore had first hand experience in this subject. I was the lucky one, I was adopted.
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