At what age were you diagnosed?: Just out of... - Thyroid UK

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At what age were you diagnosed?

Jules_Essex profile image
22 Replies

Just out of interest really :) I was diagnosed as hypo when I was 21 (which I'm thinking is pretty young hence the reason for this thread really) and I'm just wondering if anyone was diagnosed when they were around that age too :)

I had zero symptoms and the thyroid issue was just picked up on a random blood test I had when I had glandular fever when I was at University. I pretty much went straight on to 150mcg of levo fairly quickly (so I'm guessing my blood results must have been pretty severe but at that age I never thought to get copies of results etc).

I'm now 38 and basically have been in gradual decline ever since with things significantly worsening over the last couple of years :( I think I find it hard as I feel like now should be the 'prime' of my life and I feel horrendous but also feel like I have to battle on with working full time and getting up at 6am and living at quite a fast pace with the demands of work :( I often think to myself 'if this is what I feel like in my 30s gawd knows how I'm going to be by the time I'm in my 60s' :( '

Just really wondering what kind of ages people were when they were diagnosed as most people I come across with thyroid issues seem to be diagnosed much later on in life so would be interested to hear experiences from others and if anyone has had similar experiences to me really.

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Jules_Essex
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22 Replies
HEA72 profile image
HEA72

Hi, I was diagnosed as hypo at age 25 by a private doctor. My periods had stopped and I'd put on weight. I took NDT for 18 months, my periods returned and the weight reduced but I did develop continual sore breasts which I wasn't happy about. So I was then given natural progesterone cream (which I now know isn't recommended for fertile/pre menopausal women). I then stupidly came off the thyroid medication without consulting my doctor, thinking a girl in her twenties shouldn't need to be reliant on medication and that my thyroid should be able to work for itself. I'd always been a healthy girl, why was this any different? I then suffered the consequences and had all the nasty hypo symptoms. I didn't realise they were as a result of coming off the meds (stupid thinking about it now, I was very naive). I was diagnosed with CFS/ME by mainstream doctors who didn't put two and two together. I suffered for years but gradually healed with nutritional supplements, time and plenty of love from my then boyfriend. I managed to conceive and have two successful pregnancies and text book births. Then it all went down hill again after my second baby. Again, at the time the mainstream doctors put it down to PND and CFS/ME. After years of torture with this illness I've finally found out I am still hypothyroid. I just think the second pregnancy exacerbated it again. So I'm now back on treatment and healing, slowly but making progress. So don't worry, it can be diagnosed in your 20s. I now how you feel about being older than your time. I've sometimes felt like I'm 80, rather than half that age that I really am!!! I'm suspicious my Mum was hypothyroid. She was always tired, thinning falling out hair etc but never got it investigated thoroughly. She's now not alive to confirm this. So if your hypothyroidism is hereditary which I think mine is, being in your 20s and being diagnosed I wouldn't think would be unusual. Just take care of yourself. Pace yourself, be mindful of how much you're doing and make sure you're looking after your whole body, including times to relax (otherwise your adrenals will cause you grief), being aware of what you're eating and drinking, to help support your body's health. :-)

shaws profile image
shawsAdministrator

Jules,

The first thing you have to do is, if you have had a recent blood test for your thyroid gland, is to get a copy of the results from the surgery with the ranges so that members can comment on them.

Levothyroxine isn't always the best for us and sometimes just some additional T3 can make all the difference.

If you haven't had a recent blood test ask for one to be done, including T4 and T3 (labs sometimes don't do T3 if TSH is in range).

Also ask for ferritin, folate and iron, Vitamin B12 and Vitamin D. Post all of the above onto a new question for members to comment on them.

The aim is to try to recover our health but we do need the co-operation of doctors which isn't always easy.

Duchy82 profile image
Duchy82

I was 28 when i was diagnosed i was fortunate to recognise the symptoms as my grandmother had it too it still took me a good few months to go to the gp though as i was scared they wouldn't take me seriously which seems so stupid now as it couldn't have been any different and she was absolutely brilliant testing for hypo, cholesterol, folate and b12 straight away.

Duchy82 profile image
Duchy82

I was 28 when i was diagnosed i was fortunate to recognise the symptoms as my grandmother had it too it still took me a good few months to go to the gp though as i was scared they wouldn't take me seriously which seems so stupid now as it couldn't have been any different and she was absolutely brilliant testing for hypo, cholesterol, folate and b12 straight away.

Duchy82 profile image
Duchy82 in reply to Duchy82

Stupid phone, posting the same msg twice

Clutter profile image
Clutter in reply to Duchy82

More likely to be the stupid site than your phone, MCoates. The down v arrow next to recommend opens a drop down box so you can edit or delete posts.

Hello, I am sorry you are feeling so bad. It feels like every day is a continual fight to keep going doesn't it?

I had my first symptoms at 17/18 although obviously did not recognize them as hypothyroidism (never heard of the Thyroid then I don't think :-) ). After years of feeling progressively awful I got several books from the library (no Internet then) and eventually 'diagnosed' myself which enabled me to persuade the Dr to take a blood test. I was finally diagnosed at 30. No one in my family or extended family has the disease. I was on 150 mcg for years and still felt unwell. Eventually persuaded GP to put me on Eltroxin (a branded thyroxine) which suited me better. Sadly, they have recently stopped manufacture, so I am back on Levothyroxine.

People seem to suffer different symptoms although chronic tiredness is always mentioned and is horrendous. I personally also really suffered from the cold.................Funny story, in 1976 we had the hottest summer for years. One day I was walking up the hill to my house, temperature was in the high 80's (31 celsius) . No wonder I got a few funny looks, I was still wearing my coat! I have to admit I remember feeling a bit warm for once :-D. My worst symptoms were mental instability and even "myxoedema madness" which was horrible, although GP's were extremely sarcastic when I sought help. I firmly believe it strongly contributed to my marriage break up. Things much happier now and I have been so lucky in other ways.

Hypothyroidism is much more common in older women and women in general.

My advice would be to read as much as you can on the subject, this site is excellent and the experts on here have recently helped me. Also keep in mind that your symptoms may be indicative of something else. B12 deficiency has very similar symptoms to hypothyroidism and Hashimoto's hypothyroidism is related to Pernicious Anemia, another autoimmune disease. Sadly, most of us seem to find GP's quite unhelpful and ignorant of autoimmune diseases and we get very tired of being told you are a "woman of a certain age" or a hypochondriac. Two sites below may be useful.

b12d.org/

pernicious-anaemia-society....

I hope some of this is helpful and not too depressing (I have felt quite well for years but having a bad spell at the moment). Many people on here find they need T3 or even the Natural Dessicated Thyroid hormone rather than just taking T4, which certainly does not suit everyone.

thyroiduk.org.uk/tuk/treatm...

There are some real experts on here who I am sure will be along with more support. Things will get better :-)

Jules_Essex profile image
Jules_Essex

Thanks for the replies :) I am trialing T3 at the moment but not yet seeing an improvement (have only added in 10mcg for the last 3 months and see the endo again in a couple of weeks so it's early days).

I've been having B12 injections for over a year and my last blood test showed levels in excess of 2000 for that, unfortunately the B12 injections haven't helped my symptoms. I am on Vit D tablets from the doc as my levels were low over a year ago. My last reading was that they'd improved to 83.

My ESR on a blood test a fortnight ago was 19 (range was 0-7) so I'm hoping that might be a clue as to why I have such bad muscle pains and am seeing a rheumatologist in London on the 25th. I also have lichen planus which is autoimmune so I'm wondering if I have some kind of autoimmune connective tissue disease too?

My blood test last week showed TSH of 0.08 (below range which was 0.3-5.6) and T4 of 12.6 (range 6.3-14.0). Local hospital won't test T3 despite the fact I'm on it (idiots!!!) but I had it tested privately before starting T3 and it was 5.1 (range 3.1-6.8).

I actually want something else to show up on my bloods that might explain why I feel so awful as I'm hoping it's not all down to my thyroid and it's something that can be treated.

crimple profile image
crimple

I was diagnosed at 56 and discovered then that there was a very strong family history on my Dad's side. His mother, 2 sisters and younger brother all hypo and half of my 10 female cousins on that side!! With hindsight I realise that I was having problems up to 10 years before that. In December discovered that I had high TPO antibodies and that explained my decline! Have been GF and Lacto free for 3 months now. I am better than I was but still having symptoms. Hope to concentrate a bit more on my health issues now, having been through some very stressful episodes recently!

gabkad profile image
gabkad

Age 24. Should have been at age 17. That's when I started missing periods and couldn't use the BCP due to constant breakthrough bleeding.

Jessiepup profile image
Jessiepup

I was diagnosed at 25, my tsh was 180 following birth of my son, however, I was told at 20 I had a few antibodies (felt hyper and told to wait and see what happened) I had no idea what that meant and have never been diagnosed with Hashi. At that time I was also using an iodine based prep to treat thrush on advise of doc (looking back that prob triggered the Hyper, because iodine still has sme effect).

Following a year of Hyper and antibodies and a miscarriage I had hypnotherapy for the anxiety, fast heartbeat ( which worked btw) and I conceived my son. The hyper symptoms didn't come back but I became Hypo.

Successfully had another child on Thyroxine.

I have been Gluten free for 6 years a thyroid controlled on Thyroxine (as long as my iron levels are up)

I suspect I have had Thyroid symptoms since I was a child, now my 13 year old has a Goiter , but borderline bloods - I will fight tooth and nail to get him the correct treatment.

DawnD profile image
DawnD

Hi Jules. I was 28 - although I think it had been going downhill for many years! My periods were always irregular, and I stopped growing at 12 years old.

greygoose profile image
greygoose in reply to DawnD

Gosh, I stopped growing at 12, too! Before that, I was always the tallest in the class. Then, at 12, I watched them all over-taking me until I was one of the shortest. Weird. I have Hashi's.

I think, judging by symptoms and photographs, that I've been hypo - and had adrenal problems - since I was about 7 or 8. But never ever found a doctor that took any notice of my symptoms and I was told things like 'learn to live with it' or 'see a psychiatrist'!

According to Dr Lowe, two of the signs that show one had adrenal problems in childhood are that the lower jaw is too small for the number of teeth; and that as a child one spent as much time as possible hanging upside down. Yup, that's me! I still like hanging upside down! I forget the other signs but all of them fitted me except being blond and skinny. I was dark and fat! But I'm sure the fat was the Hashi's.

Also judging by photos, my mother and father, both my grandmothers and my great grandmother, and many female relatives also had this disease. But as none of them ever went to the doctor's, none of them ever got a diagnosis.

Now, I think all three of my kids have it, and two of my granddaughters aged 10 and 8, but it's so difficult trying to get them to take it seriously. My daughter even thinks it's just a cosmetic issue! Sometimes we have serious talks when they agree with me that there is a problem, and then they go away and forget about it. What can you do?!?

So, yup, I think it's a genetic problem, and I get so mad when people try to tell me that it's all down to the way one eats. There is absolutely no consistant eating pattern across the générations so I don't see how it can be that! In fact, one of my sons had a Vietnamese Partner, so his daughter is half Vietnamese, and their diet was decidedly oriental, so no connection with the way I eat! Just makes me so cross!

Hugs, Grey

Hugs, Grey

greygoose profile image
greygoose in reply to greygoose

PS I wasn't diagnosed until I was 55! And then only because of my weight. I had a doctor who was an anti-butter freak so sent me to what he thought was a dietician whom, he thought would tell me not to eat it! But she turned out to be an endo. lol She did tell me not to eat butter - or any other fat - said I should live on boiled veggies and rice. Stupid ***. Fortunately, I didn't listen to her, or I would be dead! And I rapidly moved on to the next medical halfwit. But that's another story. lol

TSH110 profile image
TSH110 in reply to greygoose

Lashings of butter is my mantra 🤣🤣🤣

greygoose profile image
greygoose in reply to TSH110

Same here! In the vague hope that it will raise my naturally low cholesterol. But it doesn't. I live on butter, cream, cheese and eggs, but it stays low - even before I was diagnosed. Just goes to show that it really has very little to do with diet.

TSH110 profile image
TSH110 in reply to greygoose

Totally agree I have higher levels of good cholesterol whatever that is, but low levels of the supposedly bad stuff. The whole cholesterol/dairy scare is nonsense.

greygoose profile image
greygoose in reply to TSH110

The whole cholesterol scare is nonsense.

TSH110 profile image
TSH110 in reply to DawnD

I stopped growing at 12 too before that I towered over even my primary school teachers

gemma29806 profile image
gemma29806

I was diagnosed at 73 as over active. Now normal (still feel horrible). Was always borderline under active. Bit of a shock when i got the phone call.

Aurealis profile image
Aurealis

I was 35, a GP ran tests as she was suspicious that I had non pitting oedema. I think I'd had it for some years by this time, possibly a lot of my life intermittently.

TSH110 profile image
TSH110

52, I was in a dire state, but looking back problems started in my late 20’s or perhaps even my teens. I only felt better when I switched to NDT from Levothyroxine

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