Fed up :(

[AbbyEdwards]

Hi, im new to this post and wondered if anybody can help me im now 29 and I've had these symptoms 2 years with still no answers and bloods coming back normal and to be told im depressed im far from depressed my life was good until I was cursed by this illness. These are my symptoms..!!

Fatigue to the point I can fall asleep anywhere

No energy

Hair is dry and falling out

Dry eyes

Body hurts/leg cramps

Night sweats

Brain fog

Headaches

Pins and needles in hands and feet

Feeling cold

Low temp

Low blood pressure

Look pale

And the list goes on I just want my life back if anybody could advice me who I could see privately or any information would be grateful as my gp and consultants think im normal because my blood test says so.

[Clutter]

Welcome to the forum, AbbyEdwards.

Ask your GP receptionist or practice manager for a printout of your recent thyroid results and ranges (figures in brackets after results) and any results for ferritin, vitamin D, B12 and folate you've had.  Post them in a new question and members will advise.

[AbbyEdwards in reply to Clutter]

Thank you I will

[VictoriaBlossom]

Hi Abby,

I know exactly how you feel, so you are not alone and I am sure there are many others in our position. You need to persevere for tests and even get private bloods done if need be. 

I've had my TSH and T4 tested only and they are coming back in normal range but in the higher range for TSH and lower for T4 yet the Drs do not understand that you can still be unwell and have the symptoms of a thyroid issue. 

They will literally just blame it on 'depression' or chronic fatigue or fybromyalgia because they cannot be bothered to treat the symptoms, they are so stuck on ranges that's why we stay poorly! 

I really hope you get some help, it will be a long road and you may well have to self medicate like many on here once you are well informed of ranges, the people on here really are a miracle and I don't know what I'd do if I hadn't of found the forum! 

Keep us posted, and try to keep well

Victoria Blossom x

[AbbyEdwards in reply to VictoriaBlossom]

Thank you for your reply I only found out about this page yesterday I wish I knew about it along time ago as I felt nobody was believing me its been hell there's been times where I've thought what's the point of living this way not because im depressed and what to die just because Im bed bound most of the days and loosing my life ive already lost 2 years and the constant fight with gps and consultants is exhausting and very upsetting they look at me and say im to young make yourself exercise and socialise you will feel so much better if only they knew, I paid privately to see a rheumatologist to be diagnosed fibro which to me is not real diagnose but because my bloods are NORMAL its easier for them to diagnose me with that I suppose.

I search the net everyday looking for answers if only I lived in America.

Sorry for the essay haha.!  

[humanbean in reply to AbbyEdwards]

Do you live in the UK?

If you do you may not be aware of it but it is possible to have blood tests done privately without a doctor being involved. You don't need anyone's permission to get these tests done, you just need money (which I know is a sticking point for a lot of people).

Another thing that you can do is buy thyroid meds online and import them into the UK totally legally. You can buy levothyroxine, T3 and NDT, and they aren't as expensive as you might think (although it does depend a lot on brand). If your package comes from outside the EU and is intercepted by customs there will be VAT to pay and also an admin charge to the delivery company. Customs doesn't intercept parcels every time though, so you might not have to pay extra.

[AbbyEdwards in reply to humanbean]

Yes i live in the uk and I am thinking about going private with bloods but i just don't know what tests to ask for as i have so many symptoms and where to go to have them done, Also i bought armour tablets last year but got to scared to take them as im not sure how to take them and also it cost me over £100  which i cant afford every month.

Even though ive not been diagnosed but have every symptom ive bought thyroid energy supplements to see if they help with energy, skin and hair.

[humanbean in reply to AbbyEdwards]

One of the cheapest ways of getting blood tests done is to use finger-prick tests. You order the test, the company you order from sends you a kit with instructions, packaging for return post and the kit you need to prick your own fingers (lancets and little test tubes).

You can get discounts via Thyroid UK too. Follow the links on this page :

thyroiduk.org.uk/tuk/testin...

One of the most popular finger-prick tests for thyroid sufferers is on this site :

homebloodtests.co.uk/

Look down the page for a blue badge with the words "Thyroid Check Plus Ten" and click on it.

There are some blood tests which can't be done with finger prick samples, and in that case you need some way of getting blood taken if it isn't included in the cost.

A test I have done a few times is on this site :

privatebloodtests.co.uk/

Look for the Comprehensive Plus V Blood Test with HbA1C.

It requires blood to be taken by a phlebotomist but it is included in the cost. You just have to turn up at a Spire Hospital. There are similar arrangements that can be made with Nuffield Hospitals too.

I forgot to say - some of the Blue Horizon websites offer free tests when you spend over a certain amount. I always opt for a Free T3 test but there are several others to choose from.

[AbbyEdwards in reply to humanbean]

Really appreciate the info i will look into it now thank you x

[VictoriaBlossom in reply to AbbyEdwards]

I only found out about it on the weekend, little did I know how much help I could actually find through just chatting to people on here it's such a weight lifted!

Exactly like me I've been told to push through and exercise, baring in mind I used to go to the gym 3x a week and work full time on top of that! The tiredness started around 3 years ago now and I thought I was depressed now I just think I was very overworked by my boss and the rest is history! I've just gone down hill since and it seems to be getting worse. The anti depressants DO NOT WORK! 

Bless you. It does seem like a battle and it does just make you feel like giving up. Like everyone on here says you need to find the dr that will treat the symptoms not just refer to the ranges! Seems pigs would sooner fly than that happening haha! 

You paid privately just to be told that? What a total disgrace an easy way out for them and they get paid an obscene amount! I'm seeing a rheumatologist on the 29th April, I refuse to be told I have fybromyalgia. 

I actually wish I could go out and do all the things my friends can, it's so frustrating going to bed at 7:30 every single night... Argh! 

No need to be sorry for the essay, I do them too I'm here if you wanna ramble, after all no one else will listen. 

[AbbyEdwards in reply to VictoriaBlossom]

I honestly could cry ive had more support from people on here in 2 days then I have had in 2 years from professionals.

Sorry to hear you are going threw the same like we know our bodies i went from a healthy lively 27 year old to a 29 year old with no energy hardly talk as im exhausted all the time, my hair and eyebrows falling out and now my body hair as stopped growing my health is rock bottom to be keep being told im normal and nothing wrong with me it so frustrating as i have to drag myself to appointment as i have hardly no family so i have no support which makes it even harder for me to battle this undiagnosed illness.

I cant believe how many people are left to suffer its so sad  

[VictoriaBlossom in reply to AbbyEdwards]

It is a disgrace, but I am glad you are finding light at the end of the tunnel for being on here, it's madness that non medical professionals seem to be so much more informed. Shows how ignorant humans really are. 

I just don't understand how they can just assume you are well, because surely everyone would feel and be that way if it was normal. I mean fair enough everyone gets their tired days or down days. But when it is lasting months and years on it should run alarm bells, even if the results are normal! 

Like I was in hospital Sunday and Monday just gone with severe gallbladder pain and was told all the tests would be done if they didn't find anything ... Well they found my bile duct was dilated.. But I was discharged even though I could not control the pain! So it's only today that it has died down a little and I can actually cope. It makes me so furious! So I'm dealing with that and all these shitty symptoms on top. 

Try not to worry as there is pleanty of help here, just keep researching and write everything down and I'm sure a solution will arise sooner rather than later. 

I mean I'm 25 I do not want to be feeling like this any longer than I have to! I will find a solution. With or without the docs help. 

Take it easy  

[AbbyEdwards in reply to VictoriaBlossom]

Exactly if where normal now we must of been super woman with magic powers before ha-ha..!!

Bless you i know there's no age you should have to have this but surely they can see we still have young bones and shouldn't be having these health issues i know this might sound far fetched but some nights i feel that poorly im scared im not going to wake up the next morning because even breathing feels hard work.

Im going to save up and pay for private blood testing have you thought about this? x

[VictoriaBlossom in reply to AbbyEdwards]

I know right! Before I must have been super human haha and three and a half stone lighter haha. 

I know they always refer to age factors and blah blah blah... I was also told its my age erm excuse me? Haha. I'm 25 not 50 with middle age spread! 

Not far fetched at all, I often feel like something is going on in my body that are aren't attending to and that its just going to get worse until it's so bad it's irreversible. But yet again that would make us sound like hypercondriacts wouldn't it 😂 

I've been very lucky and my boyfriend ordered the thyroid check 10 from blue horizons so I'll be doing it next week, nice and early and at the beginning of the week so I get a good reading, I'm going for the finger prick test so I can do it at my own convince. 

I'd totally go for it and we can catch up on results and begin our journey on getting well. Woo!! 

x

[AbbyEdwards in reply to VictoriaBlossom]

Our body maybe acting old and crippled but where still young in our hearts but unfortunately our bodies are stopping us from doing what we like doing but not out of choice. I feel like an alien at times like i got abducted over night ha-ha.

I have a supportive bf also and believes my symptoms and doesn't think im crackers like how my gp looks at me at times so im lucky i have him

Yes im serious about having this done so please keep in touch and hopefully we can get on the mend :)))) x

[VictoriaBlossom in reply to AbbyEdwards]

Yeah it's weird when you have gone to feeling okay to barely functioning. 

Maybe that's what's happened haha. They've chosen us to lead miserable lives arghhhhh! 

Oh I am glad he's supportive otherwise it would truly be awful, I don't know what I'd do without mine he's so good and takes amazing care of me  

Me too, I need to get these bloods done ASAP and sort my diet and what not, exercise isn't happening anytime soon my body physically cannot cope with it! 

 

[AbbyEdwards in reply to VictoriaBlossom]

So happy to be the chosen 1 ha-ha. (not)

He's been my rock at times, I'm pleased we have both got someone there for us who has seen us at our worst and still stuck around

I hope they find something to other people that sounds bad but you will know where im coming from so you can finally stop battling an undiagnosed illness.

Keep me updated and if you want a chat  you know where i am thank you for getting the ball rolling in our convo enjoyed our little moan haha.

Take care speak soon xxx 

[VictoriaBlossom in reply to AbbyEdwards]

Yeah me too ... Naaat! 

Yeah it is good, my bad moods and irritability have been a disgrace and he's taken the brunt of it most of the time so I am surprised he's put up with it and actually stuck with me! 

Erghh I know I pray every time hoping something will show on my bloods, just because I feel like 'am I actually imagining this?' 

But it's clear I'm not and doc actually now kinda sees that I'm not... But she's still convinced it's not the thyroid. I'd love to prove her wrong it would feel so good!

I will indeed and you do too, and I'm sure you'll hear some more moaning along the way haha. Yeah me too! 

Take it easy too, chat soon x x

[AbbyEdwards in reply to VictoriaBlossom]

Im sure he will understand that's part of the illness and you cant help it.

Who would ever thought we would prey to find something wrong with us but people like us will know exactly why..!!

and i hope u do prove her wrong

Look forward to your moaning ill join Speak soon xxx