I’m 28. I’ve just been diagnosed with hypothyroidism. I am so confused and need somewhere to find some actual information from real people about how this affects their life long term! My Doctor said one of the results is the lowest he’s ever seen in his career. I’m not sure which number it was as at this stage it is all going over my head!!
Newbie: I’m 28. I’ve just been diagnosed with... - Thyroid UK
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Grohlgirlgg
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Hmmm... well, that's the sort of thing doctors say. Doesn't mean there's any truth in it. They do like to exaggerate at times.
How hypthyroidism affects people long-term rather depends on how well they're treated. Someone who has a knowledgeable doctor who doses by the right numbers, and how the patient feels can expect to get back to pretty much normal, asymptomatic, and carry on much as they did before.
It also depends somewhat on how long you were hypo before being diagnosed, and whether any premanent damage has been done.
And, of course, it's not just about the hormones, but also about nutrients and whether deficiencies and low levels are corrected or not.
So, not knowing anything about you, it's difficult to advise.
For myself, I was hypo for nearly 40 years before anybody thought to test me. But, even so, I carried on with a normal working life, had three kids and a carreer and retired at 65 without any treatment. I was diagnosed with Hashi's at 55. Since retiring, I seem to be very vulnerable to any bug that's going around, and often find myself - like now - pretty unwell. But, whether that has anything to do with being hypo, I really don't know. Possibly the Hashi's weakened my immune systerm. Do you have Hashi's.
We're all individuals, so people will have very different experiences of all this. I'm not sure that this kind of question is useful. But, if you want any advice on something specifiic - like supplementing nutrients, or the right tests to get. There are plenty of people here to advise you. 
I went back to my doctor today (a week and 2days after my last appointment) and he took bloods and will contact me with results in 2 days. In the meantime he upped my dosage from 75mg to 100mg. He also said based on the antibodies test that I have Graves’ disease. After looking this up I am completely confused now as I thought Graves’ disease was associated with HYPERthyroidism and not HYPOthyroidism?
It is. But, the sad thing is, very few doctors appear to know the difference between Graves and Hashi's. He probably means you have Hashis.
When he contacts you, be sure to get all the details:
name of test
result
range.
Hi Grohlgirlgg, can you post your lab results? Your doctor may exaggerate as greygoose says or he may just not know what he's talking about. A lot of that going around. You're in the right place, the people in this group know what they're talking about and can help you on this journey. If your doctor hasn't given you a copy of your results, please ask for them, it's your right to have them and this will be a good start.
Ok I am seeing him again on Friday so I will ask him. This is all reassuring I feel so overwhelmed
Always ask for a print-out of any blood test results you've had for your own records.
You can post them on this forum and also include the ranges that are in brackets after the results. Members can then respond to you.
I also have Hashimoto's. Have you been checked by a Rheumatologist? They will do a thorough blood test for autoimmune diseases. I have 4 autoimmune diseases. Hashimoto's and Celiac Autoimmune usually pair up; See a Rheumatologist.
I didn't mention that I have Sjogren's and Parkinson's
Hashimoto's is not bad by itself. If you have Celiac's AID. they will team up and turn your life upside down. like they did mine. Then, they discovered that I had Sjogren's and Parkinson's. You won't be taking one medication. You'll be taking quite a few, like me. So, if it turns out that you only have Hashimoto's, you'll be fine.
No haven’t been tested for anything like that. Literally just told I have hypo and given two tablets to take daily for a week and he will check my levels weekly until hormone is at the right level? Hate that you have to attend Medicals alone at the minute cause of covid. Maybe my husband would have asked more questions and understood things a bit better
75mg daily by the way
I have Hashimoto's and was told by my Rheumatologist that Hashimoto's had teamed up with Celiac Autoimmune Disease and that I was in trouble. Together, these two diseases are ruthless and on a path of destruction of your intestines, blood, and your mouth turning to acid instead of alkaline. Acid will ruin your teeth. your blood. and your ability to fight off infection. A year after he found that I had Hashimoto's and Celiac, he ran another blood test and two more autoimmune diseases had emerged. I had Sjogren's and Parkinson's. Lucky me. I will die soon because my body won't be able to take much more abuse. I am now 72yrs old. I am in and out of hospitals.
You wrote that you have Hashimoto's. Didn't you?
No I never mentioned hasimotos. Hypothyroidism.
Are you sure your GP said that he’d be doing blood tests weekly? 7 days is not enough of an interval IMHO for there to be any change, the usual interval is 6-8 weeks.
My Rheumatologist drew my blood every month. I was kind of leary of him taking so much blood. So, I took my chances and stopped seeing him. My GP, who wanted to take over my case talked with my husband and then my now deceased husband who died of cancer last Feb 21st told him that he could take care of me. My husband refused to let me see my Rheumatologist, because he had convinced himself that my Rheumatologist was homosexual. I think he did the worse thing he could have to me. That GP didn't know much of anything about Autoimmune Diseases. Now, I am not receiving any care. Due to COVID 19 , I haven't been able to get any care since February of this year. This will probably lead to my death.
That is terrible I am sorry for your loss
Yes weekly. He’s only have meds for a week and said he would check bloods at my next appointment
That’s odd. I’m sure that if you read more of the posts on here from the admin it says testing every 6-8 weeks as that is how long it takes for the T4 changes to show in your blood. (Please do correct me if I’m wrong.)
Six to eight weeks is a standard time to see the effects of starting or changing dose of thyroid hormones.
It isn't that it takes that long for anything to happen. Much might actually occur quite quickly. Rather that it takes that long for the effects to stabilise - both in terms of blood test results and, to some extent, the effects you feel.
However, effects can start within minutes, and changes can continue for at least months.
If you re-test before six weeks or so, it might indicate what direction things are going in.
Maybe it’s just a week later for my first checkup I’m not sure. But since last Friday I’ve had my bloods taken 3 times. The doctor also is sending me for an ulstrasound as my kidney bloods came back low. But he didn’t seem to think there was any connection there.
Do lots of reading and come and visit us here most days for advice and support. The key is knowledge so you can get better care - most people on here will tell you that many GPs know little about hashimoto’s or how to manage it. There are a few myths flying around too. I would start with the NICE guidelines on managing hypothyroidism / underactive thyroid / hashimoto’s.
Also when you post try and include all relevant blood tests with ranges.
The good news is that you’ve been diagnosed. I was 8 years going to the GP complaining about this and that, and had an underweight baby, before anyone bothered checking my thyroid. So its good you have that diagnosis. Welcome to the forum x
Thank you. Goodness 8 years before you were diagnosed that’s tough going :-(. My concern is that I’ve maybe been showing signs for years and been too busy running round everyone else to think to get myself to a doctor. But at least I’m at this stage now and aware of things!
As others have said, it's hard to answer this question, as there are so many factors, but I can certainly recommend reading as much as you can here, as there are many helpful and knowledgeable people here.
If you want a good news story, I was diagnosed around 3 years ago. I was having to stop to rest my arm when brushing my teeth because it was too tiring to move it like that for 2 or 3 minutes. Also just feeling really tired and incapable when walking around, and some symptoms like puffy eyes, weight gain etc. Those symptoms all came on pretty suddenly for me, but it was the muscle weakness to the point of not being able to brush my teeth properly that made me realise something was very wrong.
I also had very high/low levels when tested - TSH of 160 (should be 0.4-4), and free T3 of less than 0.1 (should be 2.8-6.8).
It did take me a while to get medication levels right and I took some vitamin supplements as my Vitamin D was very low, but I'm now on 100mcg of Levothyroxine a day and I feel absolutely fine and normal, in fact better than I had for quite some time before diagnosis (turns out what I thought was just laziness on my part was probably my thyroid slowly shutting down). So yes, it can certainly be quite manageable in your life.
Best advice as I said is to read a lot here, and follow the advice with regards to which vitamins to get your doctor to test. Generally try to be proactive and learn about it yourself rather than completely rely on your doctor. Good luck!
Oh my goodness I can relate to a lot of that thank you. It was the teeth brushing at night that really struck me. I knew something was not right. Thank u so much for your reply
SlowDragonAdministrator
Welcome to the forum
Are you in the U.K.?
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Approx 90% of primary hypothyroidism is autoimmune thyroid disease, so it’s likely
Ask GP to test vitamin levels and thyroid antibodies if not been tested yet
Good that you have been started on a reasonable dose.
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
Which brand of levothyroxine are you currently taking
Hopefully same brand for the 25mcg and 75mcg
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Very important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Come back with new post once you get results from before starting on levothyroxine
I hope that I have been of some help. Don't dash out and buy those vitamens and meds until you talk to your doctor. I hope he is a Rheumatologist. They specialize in this field. Good luck
you can live without your thyroid as long as you stay on your thyroid meds. My thyroid is dead.
I was a Registered Cardiovascular Invasive Specialist until I reached 62. Then, I went to my boss and told him about my new friends: Hashimoto's, Celiac's, Sjogren's, and Parkinson's disease. That was years ago. I have been under treatment until my now deceased husband put his foot down and demanded that I stop seeing my Rheumatologist because he was gay. My husband died last February 21st. I lived in Houston, Tx. at the time. The next thing I knew was that my grand-daughter came to get me and move me to Florida with her. Now, here I am with no doctor to treat my diseases. My new insurance just came into effect and soon I will get the medical treatment that I need. Hashimoto's and Celiac diseases team up to destroy the villi in your colon. They normally absorb nutrients, but in the case of Celiac's disease they flatten the villi in the intestinal wall. This makes it hard for the person to absorb nutrients. That is why people with AIDS are skinny. Hashimoto's destroyed my thyroid. Well that happened to me and all the other unfortunate people that were born with these diseases. I have Hashimoto's, Celiac's, Sjogren's, and Parkinson's Autoimmune Diseases. I apparently was born with them. I had never heard of these inherited diseases until they attacked my immune system. How is your day?
helvellaAdministratorThyroid UK
Levothyroxine doesn't keep your thyroid healthy. It keeps the rest of you healthy - if dosed appropriately.
The thyroid is not always dead. It eventually dies.
Please, don't reply
Hi, your gp should refer you to a Endocrinologist usually at a hospital near you. They will advise you professionally. I was born with Congenital Hypothyroidism. So I ve had it for 60 years. You should get a medical exemption certificate they last for 5 years at a time. You will not have to pay for your medication as you will have it for life. Also you can"t just go over the counter, it is the o check with the pharmacist if is safe for you to take. Good luck & take care!! Julie
Hello Grohlgirlgg, You are quite young to have developed hypothyroidism, i was 32 and have had it 20 years now, but many people are nearer middle age when it develops.
Do not be alarmed by the posts mentioning celiac, and Sjogrens and parkinsons , There is no reason to think this will happen to you. Celiac and Sjogrens are associated with other autoimmune diseases, and most cases of hypothyroidism are autoimmune, but this does not mean you'll get them , and most of us do not get others , we just get hypothyroidism to deal with. So please don't worry. Parkinson's has nothing to do with it at all as far as i know.
You will see lots of mentions on here of trying a gluten free diet, but this is not because we are all Celiac, it is because it quite often helps people who are having difficulties with feeling OK again on Levothyroxine, but please remember that the majority of people who get diagnosed hypothyroid do fine once they are on Levothyroxine, and do not end up un forums like this.
I just didn't want you to be worried by some of the replies you received.
Most likely the 'very low' result your doctor told you about was the thyroid hormone T4 which is what your thyroid produces, and is then turned into T3 and used by the cells in your body to function..... and as you have unfortunately noticed ... not enough T4 (so not enough T3) = not enough energy to function 
It will have taken longer than you think for your body to get so low on Hormone, and you must understand that even though you have now been started on replacement hormone (Levothyroxine tablets are synthetic T4) it will take longer than you think for the cells to get used to having enough, recover from being deficient, and start to function properly again.
It is good that you have been started on a reasonable sized dose straight away, this will probably need to be increased slowly , and this takes time to get right , since the body's balancing system is complex , and it takes 6 weeks to get a true reading of the effect of a new dose.
So i'm afraid you will have to be patient with yourself for the next few months, and you can expect a bit of ups and downs. When i started on 50 mcg Levo i remember feeling nothing much for a week , then quite a lot better for a couple of weeks , then somewhere in the middle for a few weeks , And then after a blood test it was time to increase the dose to 100mcg, and same pattern of feeling good for a bit, then a bit flat again. I eventually ended up on 150mcg , but it took about 10 months to get there.
However i was much improved from how i felt before taking Levo, for all of this time, so don't worry, i'm not saying you'll feel as rubbish as you have been for 10 months.
You also have a big advantage over me when i started, in that you have already found this Forum, which is usually very reliable for accurate , balanced, information and support. I would have done much better over the last 20 yrs if i had been able to talk to other people who had the same problem, rather than having to rely on just what the doctors told me.
So my advice is read all you can on old posts here, don't be worried that you will end up with difficulties, you will probably do fine , and if you do have problems you can get help quickly here.
Doctors will usually just tell you your results are 'normal ' or 'low' or 'high', but it's a good idea to find out your actual results and keep a record yourself along with dates of dose changes and how you felt at the time.
Doctors don't always think thyroid is very important , and they don't get taught much about it. So you'll get better results from treatment if you find things out for yourself.
It is hard to get your head round how thyroid treatment works and what different blood tests mean, so for now just start asking for your actual thyroid blood test results and the lab ranges that come with them, and we can explain what they mean. The lab range is always needed and is in brackets after the result.
The tests to ask about are;
TSH (Thyroid Stimulating Hormone) 0.00 [ ? - ? ] This is not an active hormone , it's a message from your pituitary gland to your thyroid gland to ask for more thyroid hormone to be made , or to tell it there is enough already. A high number means make more please.
fT4 (free T4 ) 0.00 [ ? - ? ] T4 is the inactive/ storage form of hormone.
fT3 (free T3 ) 0.00 [ ? - ? ] T3 is the active hormone. NHS usually do not measure this, which is a shame, as it's very important.
TPOab (thyroid peroxidase antibodies) 0 [<? ] This will tell you if the cause for your hypothyroidism is autoimmune, (sometimes called Hashimoto's disease) This test is usually just done at diagnosis and not repeated.
Don't be surprised if you get looked at like you've got two heads if you ask for your results, just say you want them for your records, and remember they are your results and you have a legal right to know them.
Gosh , that was longer than intended , oh well , hope it helps, and doesn't just give you a headache.
Thank you so much. That post is more helpful than you know. Don’t apologise for it being long. It’s all so overwhelming. My doctor said don’t worry about it too much it can be sorted with the right dose of medication, he has a strategy in place - yet didn’t explain what it was. My kidney bloods were low so I got my bloods taken again on Monday to confirm & then a nurse came & told me my bloods came back and everything was ok with my kidney and that I can go home. So I never seen the doctor again for him to talk me through my meds or to talk me through this strategy he has in mind.. the nurse just said to come back in a week to see how the medication is working and if the dosage is correct. So I think I will be back with 100s of questions for him lol.
Glad it helped don't be too surprised if doctor doesn't seem to know the answers... they only get about half an hour on the thyroid at medical school, most of us here know more than they do now. But yours does seem to be on the ball , at least they stared you on a decent amount , and at least they asked you to come back soon to see the result on your blood . Your fT4 result will probably be higher after a week on 75mcg, but your TSH may not have come down by much yet, its a bit of a delayed reaction for the TSH, which is why they usually make you wait 6 weeks for a blood test after a dose change
It helps to imagine T4/3 on one end of a see saw , and TSH on the other .
Low T4/3 = high TSH
High T4/3 = Low TSH
So at diagnosis you will have had a high TSH, and Low T4 then you take Levo and that raises T4 within a few days , and lowers TSH, but TSH can take a few weeks to come down.
Hopefully you'll start to feel quite a lot better very soon and have enough energy to brush your teeth.... Yeah!! ....Partying may take a bit longer....And in between some of your bodily systems may go WTF in response to being given enough hormone, after not having enough for a while.
Best Wishes,
Tat
x
Haha that gave me a laugh! Can’t do much partying at the minute anyways in Northern Ireland where I am cause of restrictions so I guess this is the best time to be diagnosed if there is a best time lol! Thanks a lot. I have screenshotted your replies to look back on for information. Take care x
Yes , good planning on your part ... if you had to pick a year out of your life to be feel like a zombie 2020 was a good call.x
Hey there Tatt :
I see you are in my playground - no worries I'll go on the swings !!
Hi pennyannie I'm still trying to come up with a way to fit my favourite piece of playground equipment ,the 'witches hat', into the analogy.But probably need diogenes for that
👭🏄
You make me smile on an otherwise " grey day ' !!
I think I see my doctor's head in this hat - though not sure which way up her head falls anymore !!!
lol
shawsAdministrator
Hi Grohlgirlgg,
I am sorry you are hypothyroid. If you can put some of your history regarding become hypothyroid into your Profile page. This is the page in which members can click into in future, so that you don't need often to repeat the same answer.
If you click onto your name (or other members' names) it will take you to their profile page and hopefully they will have put their journey into becoming hypo or hyperthyroid.
Ok thanks I will do that
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