Gutted about thyroid ultrasound

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Emily Case

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Well, as mentioned in a previous thread I was booked in for 'Ultrasound Guided Aspiration Thyroid' at 11:20 this morning.

I got there, explained symptoms etc... he was performing the ultrasound when the nurse turned up with her needle to draw out fluid and the Radiologist said "don't bother, there's nothing wrong with it, and nothing wrong with her - sorry we wasted your time".

I've had 2 blood tests on the NHS now (both have come back normal) and 2 doctors have felt the lump in my throat (which was assumed to be a goitre).

I was sent for the ultrasound (as an urgent matter) due to my family history - my mum, nan and great nan all had goitres and under/overactive thyroids, and my nan and great nan both developed thyroid cancer. They all had the gland removed.

Doctors (up until the last one I saw who referred me to the hospital for a scan) think I'm being ridiculous - one even had the audacity to say that I was "looking for an excuse for being so overweight".

My mum kept saying 'I understand how you feel, it took me 29 years to get a diagnosis and they only removed it because the biopsy results were inconclusive and better to be safe than sorry'.

We have discovered that the NHS don't do a Full Thyroid Function blood test - they only test TSH, T3 and T4... to get a full diagnosis, there are countless other things that need to be looked at! The only way to get a full thyroid function test is to go private.

I know I should feel relieved that I'm "normal" but to be honest I feel a bit cheated. My mum now is convinced I've made it all up (even though I haven't tried going private yet - she's decided there's no point) but the symptoms are all so real. I have every single one, bar 3.

I don't want to feel like this for the next 30 odd years. I've suffered with depression for long enough and I'm sick of feeling poorly, tired and worst of all, fat! A constant diet for the last 5 years and only weight gain? That's not living. I don't go out and enjoy myself any more, because everyone judges my weight... I'm miserable.

Can someone please please just give me a little hope. Do you suffer with your thyroid? How did you get diagnosed and how long did it take? Is it genetic? Did people take you seriously?

I'm now starting to doubt myself... maybe I AM normal and am just a hypochondriac? :rolleyes:

The comment from my mum hasn't helped either.
"Well, now we know. I don't think there's any point getting other blood tests, to be honest I just think you need to start getting fit. Maybe that lump in your throat is because you've piled the weight on? You have no idea how relieved I am that you're OK"

I just want to scream.... I'M NOT OK, I FEEL LIKE CR*P! :cry:
 

*Lisa-Marie*

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Feel for you hun :( I've had an un diagnosed condition for 5 years that doctors have turned around n said I'm making up and I'm fine when I'm in excruciating pain most of the time, almost like docs can't be arsed to dig a little deeper... Not like it's their job or anything!! 😡 hang in there and keep pestering them until they get off their 'educated' arses and do something about it. Chin up and best of luck xx
 

lila22

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Ahh I'm sorry to hear your having a awful time, it's frustrating when you no something is up but your told by others your ok!
I don't have this but I do have ME which took 4.5 yrs to get diagnosed and it was so tiring and frustrating.
You no your own body and is something is not right you will have to keep going till you can get it sorted.
Hope yr ok x x x
 

Emily Case

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Thanks girls... I know I sound really whiney but it's horrible when people aren't listening. You're both right - we are the only ones who know what is right for us, not anyone else. I don't know how they can just go by some cruddy lab test... an ink spot on some paper determines how I FEEL? It just seems wrong.

Didn't doctors used to treat as a result of symptoms? After all, they all point to the same thing. Family history is just an added bonus. But still no answers?

I'd really appreciate it if anyone who has been in the same position could recommend a great endocrinologist or similar, in Kent... I'd go as far as London, but I don't just want to judge by the websites.

*sigh* I thought today would be the start of my 'healing journey' but I feel like someone's punched me in the stomach!

xxx
 

waffle4

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Awww so sorry you're feeling so rough. I know what it's like trying to get diagnosed for something that isn't obvious. If I were you I would get the specialised blood tests done privately as the only way to put your mind at rest is to know 100% either way. If you think your family won't be sympathetic then you could even get the tests done and just keep it to yourself til you get your results. You're gonna be constantly stressing til you know one way or another so I would take control of the situation and get those tests ordered. Good luck and let us know how you get on.
Big hugs xxx
 

lila22

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Thanks girls... I know I sound really whiney but it's horrible when people aren't listening. You're both right - we are the only ones who know what is right for us, not anyone else. I don't know how they can just go by some cruddy lab test... an ink spot on some paper determines how I FEEL? It just seems wrong.

Didn't doctors used to treat as a result of symptoms? After all, they all point to the same thing. Family history is just an added bonus. But still no answers?

I'd really appreciate it if anyone who has been in the same position could recommend a great endocrinologist or similar, in Kent... I'd go as far as London, but I don't just want to judge by the websites.

*sigh* I thought today would be the start of my 'healing journey' but I feel like someone's punched me in the stomach!

xxx


Hopefully someone can recommend where to go next, unless a doctor can say right you have this there is a tablet they dont want to no!
Like i said YOU no yr own body and YOU no yr not feeling right so dont feel down hearted, keep going and you will find someone who can help hopefully soon. xxxx:hug:
 

Emily Case

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waffle4, I definitely think that's what I'm going to do... I just don't know where to start. Who do I go to for specialist tests? I don't feel the need to hide anything, I've already told my mum that if I don't have her support, I will go it alone and I AM going for more tests with people who are trained in these specific health issues.

I did find a website and I think it said a full thyroid function test was £96 but I can't for the life of me remember where I found it, I've written it down somewhere...


xxx
 

pure

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I'm sorry you did't get the results you were hoping for but don't give up and just settle for not feeling well.

I guess I was lucky in that it only took about 6 months for me to b diagnosed and my results were very clear cut, but I know that for many it can take years.

Thyroid Mistreatment, Hypothyroidism Scandals, and Thyroid Treatment Problems | Stop The Thyroid Madness

Dr Peatfield Metabolic Clinic Schedule

Dr Peatfield holds regular clinics around the country and is who I eventually saw - he will arrange all tests that are required too.
 

Emily Case

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Pure, I'd been reading through that site since you sent me the link last time and I really have to thank you as it makes sense of things! You've been great. I will have a look at the second link when I get home and hopefully get somewhere!!

Xxx
 

waffle4

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waffle4, I definitely think that's what I'm going to do... I just don't know where to start. Who do I go to for specialist tests? I don't feel the need to hide anything, I've already told my mum that if I don't have her support, I will go it alone and I AM going for more tests with people who are trained in these specific health issues.

I did find a website and I think it said a full thyroid function test was £96 but I can't for the life of me remember where I found it, I've written it down somewhere...


xxx
I've paid for private tests in desperation before (and was then moved back on the Nhs to see the same consultant once they knew what was wrong with me) and I just phoned my local private hospital and explained what tests I wanted done and they advised me which consultant etc. I then researched the consultant online and have to say I was very happy with mine and he was disgusted that the Nhs had failed me so badly and promptly put me on his Nhs list for surgery that very evening!!
Obviously all cases ate different but I would phone your local private hospital for advice first, if they are linked to your current Nhs hospital they should also be able to get your notes quicker too.
Hang in there and you WILL get this sorted xxxx
 

deanosnana

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My heart goes out to you, VerdePurdy. Whenever someone is overweight (which I am too, by the way) right away, we are not taken seriously.

I have an underactive thyroid. I'm on meds but the weight did not just fall off. I've dieted for YEARS with little, if any, success.

The ONLY thing that worked for me (FINALLY) in losing weight is keeping track of calories in vs calories out.

So, when I keep my intake to between 1200 and 1550 calories and walk every day, I can SAFELY and consistently lose about two pounds a week. I had lost 30 pounds a year and a half ago.

I will say, though...I've been off my regimen and have gained the weight back. But that is MY fault for eating everything that wasn't nailed down. I know if I got back to my healthier lifestyle, I could lose the weight again.

I'm from the US and I'm not too familiar with the NHS vs private but I would suggest for four weeks you keep track of your eating and your exercise. Write down everything! Then if you don't lose weight, you can take that info to your doc and go from there.

My heart does go out to you! :hug:
 

shedunlop

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If you really feel that there is something wrong then it is worth every penny to go private. I have had treatments both privately and on the NHS. You can choose your consultant and they will do the tests that are necessary and then you can slot back into the NHS without any problems.

You could be tired because of your weight and depression of course, but this is not likely to get any better until you know for sure that you are clear of anything more sinister. I would book yourself a private consultation and take control of this my darling, you will feel better just doing that! :wink2:
 

Emily Case

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I'm trying very hard to lose the weight (and have been for months) - my previous thread was originally a question about diets!

Im on diet chef, which is a 1500 kcal per day diet, and im going to the gym with a friend two or three times a week. My collective weight loss over the course of 4 months - diet and exercise - has been 6kg which really is not enough for how hard I've tried. I have kept food diaries and the doctor has seen my fluctuating weight losses/gains because I'm on a weight loss program in the same surgery... something isn't right and he could see that. He sent me for more blood tests and the ultrasound because he KNEW things weren't quite the way they should be.

I don't reckon it's a mental or physical issue any more - I've come through that to a degree, I believe I need medical support and for people to listen. People don't take me seriously because I'm only 18 and quite clearly don't know what I'm talking about!

I will be continuing the diet and exercise regime (or I will just keep getting bigger and I'd rather stay the same than go up another dress size!) but I really want someone to just take a good look, dig deeper and say "yep, we will treat you or at least do some more tests because all of these symptoms are affecting your quality of life" (which they are).

You're all so lovely to send me these messages, I am so grateful for your replies and advice. It's nice to be able to "talk" to people that, even if they can't relate, can send their best wishes and generally make me feel a little better.

If I go private and it turns out I'm still "normal", I'll give up on the thyroid thing and just battle on as I always have. People don't see the real me... just the polite, smiley, well-spoken and happy me.

I've come a long way in 5 years. Through that relationship that ate through my personality, through the depressive, suicidal episodes, through the panic attacks at school and in supermarkets, through the a-level failures and the employment nightmares. I'm finally starting to find myself... but there's something missing. Something inside that's just making me crumble away again and I feel like I'm going backwards! I feel poorly, genuinely ill, like I'm wafting through everything right now. The only thing I feel I genuinely wake up for is work - I love my job and I feel it's saved me.

I'm not looking for an excuse; I'm looking for an honest answer, and to not be shoved out of the door yet again... I want someone to sit down with me and assess the ENTIRE situation, not just bits of it!

I'm sure I'll get somewhere. I have a lot of very good-hearted people behind me, and I'm trying so so hard to get through it. When I have my final answer for this particular issue, I can move on. When this last test tells me it's all in my head, I'll then accept it!

Thanks again, everyone... I really mean it.
:hug:

xxx
 
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CrunchBunch

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I'm a fitness instructor & I always recommend Free Calorie Counter, Diet & Exercise Journal | MyFitnessPal.com to clients, it helps to keep a track of your daily calorie allowance & calories burnt exercising. If you're working out a lot I wouldn't have thought that 1500 cals a day was enough - although i will stress that I'm not a dietician! It's free though so worth a look. Best of luck x
 

Emily Case

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Thanks CrunchBunch, I used to use that when I was calorie counting :)

I don't any more because the diet chef is all done for you - 1,500 a day and then fruit/veg added. I actually thought it was quite a lot, because my previous calorie counting (where I was doing it all off my own back) I was having 1,200.

I'm not working out a hell of a lot, I tend to go for about 1 - 1.5 hours 2 - 3 times a week and that's the stationary bike, cross trainer, treadmill, rowing machine and sometimes weights... I enjoy the gym and the diet chef is actually pretty decent food (if anyone is considering it).

xxx
 

taggyboy

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Hi

Did you know Dr. Peatfield has a clinic in Sussex. Not too far from Kent if you drive.

I'm on my phone so very slow at using it. I totally sympathise with how your feeling and can only offer a big cyber hug. This condition is awful and a nightmare.

Truly hope you can get it sorted out x
 

waffle4

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I would take it one step at a time hun. Firstly ring your local private hospital for advice and get those tests sorted so you can either deal with it or lay it to rest once and for all. Just a thought but could you be lacking in vitamins too? I was deficient in b12 which can sometimes produce symptoms similar to under active/overactive thyroid and I generally felt really ill (tired, headaches, weight gain). Once I was prescribed a b12 supplement I felt so much better and my weight went back to normal. Maybe worth asking your GP for a full blood count test again?? HTH xxx
 

Emily Case

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Oh that's brilliant I've just had a look at the site and Crawley is only an hour or so away from me which is great.

I've just sent the link to my mum (who has now agreed to support me whatever my decision) and we will go through it together.

To those of you who have used him, (pure and taggyboy) can I ask what the procedure was? E.g. from the moment you phoned to present?

waffle4, I'm on ALL SORTS of herbal thingies, plus vitamins and minerals. Apparently zinc, selenium etc all help the thyroid. I've seen no change, unfortunately, but will continue to take them as they can't do any harm!
I've never had a blood count test, only thyroid function tests (TSH, T3 and T4)... does it show red/white cell numbers?

I've been reading up about immune deficiency, polycystic ovaries, chronic low grade depression, hormone imbalances etc etc so it could be a number of things - the only reason I'm concentrating on the thyroid is because the family history makes it the prime suspect... 3 generations, all women, on my mum's side, have had this exact problem and apparently genetics do play a part in it.

Thanks so much, I'm feeling more hopeful with every reply to this thread!!

xxx
 
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waffle4

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That's lovely your mum is supporting you (where would we be without our mums eh?!) glad you feel a but brighter and just keep saying to yourself you WILL get this sorted one way or another. Keep us all posted as we're all rooting for you chick
Big hugs xx
 

pure

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Oh that's brilliant I've just had a look at the site and Crawley is only an hour or so away from me which is great.

I've just sent the link to my mum (who has now agreed to support me whatever my decision) and we will go through it together.

To those of you who have used him, (pure and taggyboy) can I ask what the procedure was? E.g. from the moment you phoned to present?

Thanks so much, I'm feeling more hopeful with every reply to this thread!!

xxx
From what I can remember (it was a few years ago lol) you have to complete quite an extensive questionaire, I think theres a copy on the link, have your appointment, which is 1hr 15mins for initial consultation, if you want the price pm me, he then goes through your symptoms, does a couple of little non invasive tests there and then, goes through which tests you need to do, normally includes an adrenal function test too.

After all tests results he will send you a detailed treatment plan, including info on any meds, time scales etc

He really was fantastic, the only fault I would say is getting through to him/his secretary on the phone, but well well worth it :hug:
 

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