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Original poster

How long did it take to be diagnosed with Hashimotos disease?

19 replies

Jodie569 · 27/09/2022 14:50

Hi I am 99% sure I have this. I feel an idiot because the more I read up online, the more I can see all my symptoms that It looks like it is this (doc never once mentioned to check thyroid). Symptoms started after I had my daughter 8 years ago around 5 and then I started to notice something wasn't right. I was told it was depression and anxiety. I tick EVERY symptom now. TSH comes back 1.89 and I have a lump on the front of my neck now. I have ordered the antibody T3 and T4 test kid from Medi check because my doctor will not do extra tests. I have a scan on my neck week and worried I have left it too late, because the restricted breathing started in 2017 (prob when Goitre started growing).

I would like to hear some stories advice from anyone who has this please?. I have not a lot of knowledge on this. I am in my early 40's.

OP posts:
OneLitreOfWater · 27/09/2022 15:04

If you're paying for private tests isn't the antibodies test available?

As you're having a scan I assume the results of that will give your doc more clues as to what's wrong.

DarkMatternix · 27/09/2022 15:07

I was diagnosed at 25 after a single blood test, on the basis of TSH level and antibodies

PeloFondo · 27/09/2022 15:08

I was diagnosed when I accidentally had an appointment at immunology instead of dermatology Confused
They were quiet and decided to do bloods, and it came back with antibodies
TSH was about 5 but they wouldn't medicate until it got to 7.5. On 75mg levo now but they've never said hashimotos however I do have antibodies

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Original poster
Jodie569 · 27/09/2022 15:47

Hi OneLitreOfWater, I'm not paying for a private doctor. She will only test my TSH because It came back normal, so I have ordered a home test kit. The scan is in hospital not private either.

OP posts:
Original poster
Jodie569 · 27/09/2022 15:48

DarkMatternix · 27/09/2022 15:07

I was diagnosed at 25 after a single blood test, on the basis of TSH level and antibodies

Hi DarkMattenix, that's really young. Did you have a lot of symptoms before diagnosed?.

OP posts:
Original poster
Jodie569 · 27/09/2022 15:50

PeloFondo · 27/09/2022 15:08

I was diagnosed when I accidentally had an appointment at immunology instead of dermatology Confused
They were quiet and decided to do bloods, and it came back with antibodies
TSH was about 5 but they wouldn't medicate until it got to 7.5. On 75mg levo now but they've never said hashimotos however I do have antibodies

Lucky they did antibodies test otherwise you would not have known you had it with TSH?.

OP posts:
Schulte · 27/09/2022 15:55

Difficult one. I always have to remind my GP to check TSH as well as T4 levels. Please insist that you get a proper diagnosis.

Original poster
Jodie569 · 27/09/2022 16:18

Schulte · 27/09/2022 15:55

Difficult one. I always have to remind my GP to check TSH as well as T4 levels. Please insist that you get a proper diagnosis.

Hi Schulte, I have been going to the doctors for years and they never once did a Thyroid blood test or mention Thyroid. I have just received the home Medi test kit that test antibodies, T3 & t4 so hopefully I can send that off and get results before my ultrasound appointment next week. I feel like an idiot now as it could have been resolved years ago and now I have a worrying lump.

OP posts:
DarkMatternix · 27/09/2022 16:19

Did you have a lot of symptoms before diagnosed?

Looking back I had some symptoms but they were all explained away by other things (tiredness, always cold, really dry hair) but nothing severe enough to send me to the doctors. I was having blood tests as they suspected I was coeliac based on other symptoms (I was so it was a two for one bonus!)

Sideorderofchips · 27/09/2022 16:30

I've had hashimotos for about 6 years now. I went to the gp with typical underactive thyroid symptoms. He did my antibody level as well and mine was 436.should have been between 0-6

Chattycathydoll · 27/09/2022 16:32

I’m going through it at the moment. Dr won’t check other levels as TSH came back 3 which is within range for NHS, but I have all the symptoms (massive weight gain despite diet not changing, tiredness, always cold, skin so dry it’s flaking) and a massive family history of it (mother, grandparents on both sides, two aunts all have it). I’ve just ordered a postal blood test to check T3 & T4 levels. If not that I guess my body is just being shit for some reason.

Original poster
Jodie569 · 27/09/2022 16:40

Chattycathydoll · 27/09/2022 16:32

I’m going through it at the moment. Dr won’t check other levels as TSH came back 3 which is within range for NHS, but I have all the symptoms (massive weight gain despite diet not changing, tiredness, always cold, skin so dry it’s flaking) and a massive family history of it (mother, grandparents on both sides, two aunts all have it). I’ve just ordered a postal blood test to check T3 & T4 levels. If not that I guess my body is just being shit for some reason.

Hi Chattycathydoll, It is exhausting isn't it. I have paid for home test kit that checks antibodies, T3/T4 I have read on forums that so many do not get diagnosed until they get a goitre and paid private for extra tests. I love the NHS but they are shit when it comes to thyroid problems. I hope you get something sorted. Check your neck as well, I did not notice mine I have had restricted breathing laying down for 5 years now and now its because the groitre or lump was growing slowly. Hopefully It is not cancerous.

OP posts:
Original poster
Jodie569 · 27/09/2022 16:43

Sideorderofchips · 27/09/2022 16:30

I've had hashimotos for about 6 years now. I went to the gp with typical underactive thyroid symptoms. He did my antibody level as well and mine was 436.should have been between 0-6

Hi Side, I wish more doctors were like yours. I would not be in this position now. All i have had is that is it is all in my head.... When it wasn't. Do you live with it okay? I am scared because I have prob lived with it since my daughter was born she is 8 now. I have a goitre, doctors still saying its fine nothing to worry about.

OP posts:
Ilovefluffysheep · 27/09/2022 16:56

I had to tell the GP after paying for private tests with medichecks! Went to see a useless endo who only saw me once. Total waste of time, but he did at least confirm the diagnosis.

If you haven't already, get yourself on Thyroid UK website, and the health unlocked forum that you can access via there. Lots of very knowledgeable people on there, far more so than GPs, who to be honest, barely understand thyroid disease.

Thyroxine didn't help me, I ended up self-sourcing T3 medication (liothyronine), which you can buy over the counter in Greece for a couple of euros a box, and that has made a difference.

I try and avoid the GP as much as possible when dealing with my thyroid to be honest.

Original poster
Jodie569 · 27/09/2022 17:18

Ilovefluffysheep · 27/09/2022 16:56

I had to tell the GP after paying for private tests with medichecks! Went to see a useless endo who only saw me once. Total waste of time, but he did at least confirm the diagnosis.

If you haven't already, get yourself on Thyroid UK website, and the health unlocked forum that you can access via there. Lots of very knowledgeable people on there, far more so than GPs, who to be honest, barely understand thyroid disease.

Thyroxine didn't help me, I ended up self-sourcing T3 medication (liothyronine), which you can buy over the counter in Greece for a couple of euros a box, and that has made a difference.

I try and avoid the GP as much as possible when dealing with my thyroid to be honest.

Hi Fluffysheep, You're right!. I have completely lost all faith in my doctors. I have also ordered medichecks, It came this afternoon so I shall be doing it first thing in the morning and then send it off straightaway in hope that I get results before my ENT appointment tomorrow.

I have been them websites and learnt so much. I was a mess when I saw the lump on my neck but now I am learning that it is very common. I hope you feel better now you are on the right medication. Thank you for replying it really does help me feel not to panicky.

OP posts:
TheVanguardSix · 27/09/2022 17:29

My mum has Hashimoto’s, OP, diagnosed in her 60s. She’s 87 now. In her case, her lump was a cyst which they’d periodically drain and then it would return. I’m not sure why her thyroid wasn’t removed but managing the recurrent cyst was the choice her endocrinologist in the States made. Diagnosis and management of her Hashimoto’s was truly life improving, recurrent cyst and all.
She lives in the States, as mentioned, but used to stay with me a lot when she could travel. Her endocrinologist over here was a Prof Fausto Palazzo. Amazing endocrinologist and lovely, lovely bedside manner! On the NHS, he’s at Hammersmith hospital and Charing Cross hospital. Privately, Cromwell hospital and OneWelbeck in Central London.

Original poster
Jodie569 · 27/09/2022 17:34

TheVanguardSix · 27/09/2022 17:29

My mum has Hashimoto’s, OP, diagnosed in her 60s. She’s 87 now. In her case, her lump was a cyst which they’d periodically drain and then it would return. I’m not sure why her thyroid wasn’t removed but managing the recurrent cyst was the choice her endocrinologist in the States made. Diagnosis and management of her Hashimoto’s was truly life improving, recurrent cyst and all.
She lives in the States, as mentioned, but used to stay with me a lot when she could travel. Her endocrinologist over here was a Prof Fausto Palazzo. Amazing endocrinologist and lovely, lovely bedside manner! On the NHS, he’s at Hammersmith hospital and Charing Cross hospital. Privately, Cromwell hospital and OneWelbeck in Central London.

Hi VanguardSix, Thank you I am only a couple hours away from there. I will look into this as I am looking to pay private. I have no clue about Thyroids and had no idea how common it is for lumps, I just instantly thought I had cancer (hopefully haven't because I have not had the lump checked yet). Hope you and your mum are well.

OP posts:
Original poster
Jodie569 · 30/09/2022 10:58

Hi ladies anyone good at reading results please?

How long did it take to be diagnosed with Hashimotos disease?
OP posts:
Original poster
Jodie569 · 30/09/2022 10:59

over active thyroid is it high or low

How long did it take to be diagnosed with Hashimotos disease?
OP posts:
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