TSH levels elevated-"too young for medication" - Thyroid UK

Thyroid UK

137,829 members161,654 posts

TSH levels elevated-"too young for medication"

KirstyC11 profile image
33 Replies

I'm a 17 year old and recently I went to my GP because I had laryngitis. While I was there I told him about how I have been having strange symptoms for months- I'm very tired all the time, my appetite is almost non existent, I'm having trouble concentrating, my skin is dry and I always have a feeling of general sickness. He told me to come back for blood tests and when the tests came back my TSH levels were slightly elevated. Having read about hypothyroidism and seeing how accurately it described how I felt, I was actually happy something showed up because I thought I was going crazy! At least now I had an answer and hopefully I can get treated and feel a bit better. But my doctor then said he's not worried about the results and that I'm too young for the medication anyways. I was upset and never got to ask any questions. This really does impact my life- I'm too tired and/or sick to go out with friends, and I have exams next week but my brain is so foggy and I've been out of school the past two weeks because of the fatigue- I'm worried about failing! I never had trouble in school before and I feel like the last year or so of my life has been ruined by this. The doctor asked me to come back for more bloods in the future(can't remember if he said when-the brain fog!!!) to see if the TSH levels change. I don't know where to go from here- I understand he might not think it's severe enough to put me on lifelong medication but I don't know how I can keep going like this. Should I see another doctor? Any help is appreciated.

Edit- just to point out the severity of the fatigue- walking up the stairs gives me heart palpations and I need to catch my breath, and exercises I did regularly without problems make me almost pass out . I'm a healthy weight for my height and I played sport for my country during my early teens

Written by
KirstyC11 profile image
KirstyC11
To view profiles and participate in discussions please or .
Read more about...
33 Replies
SeasideSusie profile image
SeasideSusieRemembering

KirstyC11 Your GP is talking BS. There are children much younger than you on Levothyroxine, my step granddaughter started Levo when she was 14.

The problem probably lies with the fact that your TSH is only slightly elevated. The guidelines that GPs have to follow state that TSH should be 10 before diagnosing hypothyroidism and prescribing Levo. If your FT4 was under range along with an elevated TSH you may get treatment, or sometimes if antibodies are exceptionally high an enlightened doctor might start Levo. So if all you have is the slightly elevated TSH then unfortunately your GP is following the guidelines in waiting and re-testing in a few months.

You could try another GP and emphasise how your symptoms impact on your life, particularly where your education is concerned, and take an assertive person with you who can back you up and speak on your behalf if necessary, preferably a parent.

Ellie-Louise profile image
Ellie-Louise in reply to SeasideSusie

I agree, it's disgraceful for a doctor to play god like that!

JanePound profile image
JanePound in reply to SeasideSusie

My daughter started medication at age 14. It seems that your GP hasn't fully thought through the ramifications of you being ill at your age. He is playing with your future. Good Luck x

Hillwoman profile image
Hillwoman

Firstly, do you have your test results? Please could you post them, along with the lab ranges. With that info, members will be able to advise you.

Secondly, your GP should be shot. Not only did he tell you a complete porky, but you are in a hell of a fix at a crucial stage in your education. Are you able to postpone your exams, or, if not, would you be able to re-take them if the results don't reflect your true abilities? You need a contingency plan, because you should have received treatment and been stabilised long before this point. I don't mean to put the wind up you, but as you know yourself, you need help very soon.

KirstyC11 profile image
KirstyC11 in reply to Hillwoman

Don't have the results but am going to get them ASAP and will post then.

My GP is known to not really like giving medication, he shrugs a lot off, I think he said I was too young because he doesn't think my situation is severe enough for meds and because I'm young He thinks I should be fine. I've been thinking about switching GPs for a long time as it's very hard to be taken seriously with my current one.

My main problem in regards to exams is the stress of catching up following two weeks being absent and trying to prep for exams too. The stress will surely only make me feel worse! With a doctors note I could get out of them and take them at a later date but I don't know if my GP will give me one now seeing as he thinks I'm fine. Thanks very much for the reply!

Hillwoman profile image
Hillwoman in reply to KirstyC11

If there is space on the list of another practice in your area, you can switch very quickly. All you have to do is fill in a form at reception and your records will be requested from your old practice. You don't need to wait for the records to be transferred before seeing a new doctor - make an appointment as soon as you've filled in that form.

LAHs profile image
LAHs in reply to KirstyC11

Get a postponement of your exams if you can. Stress on top of hypothyroidism is not a good combination - especially if the hypo is not being treated.

And yes I agree with the others, change your GP, I am on my forth Endocrinologist if that gives you encouragement. It took that many and five years to get the dose right. It is not a terrible thing to change docs, you just keep changing until you get one that is right, like anything else in life - it just feels strange, maybe terrifying if it is a doctor because we tend to think they are superhumans.

LAHs profile image
LAHs in reply to KirstyC11

Oh, and something else. My friend's son was away at university. My friend and her husband arranged to visit him one weekend close to finals to make sure he had everything he needed (i.e. not a surprise visit). They found him in bed, not wanting to get up, not wanting to do anything, and super worried about the finals, he was SOoo tired. They took him home, fixed him up with an emergency doctor's visit (by sheer good fortune, a good doc), he was diagnosed with hypothyroidism, put on Levo, came "back to life" and went on to pass his exams. And he is now a very successful young man.

A couple of years after my friend told me that story I became unusually tired and not wanting to do anything, I went to the doctor immediately and told him (yes, told not asked) to check out my thyroid. And, waddoyouknow! I had thyroid cancer. My friend's story probably saved my life. I am not suggesting that you have TC but you probably need Levo or NDT if Levo doesn't suit, just like my friend's son.

Anthea55 profile image
Anthea55

Hi Kirsty

Can you get a printout of your blood test results, then post them on here for comments. Your GP's idea of 'slightly elevated' may still be too high for you and certainly may not be optimal.

You could try another GP. You could also get a full set of thyroid tests done privately. Many people on here get them done by Blue Horizon. Their finger prick tests are easy to do at home and they test more than your GP usually does. The Thyroid Plus Eleven test is used by many on here. You can then show the results to your GP.

Keep off the exercises for a while, but walking is good.

All the best.

Jazzw profile image
Jazzw

What's your diet like? Do you eat a varied range of foods? The other thing to check out is Vit B12 deficiency. It's incredibly common but many doctors simply don't think to check it.

Not saying it isn't your thyroid - it probably is! But there might be other things going on too.

KirstyC11 profile image
KirstyC11 in reply to Jazzw

When I got my blood tests done the nurse told me I was being checked for "everything" and the only thing that came back abnormal was the TSH levels, but once I get a printout of the results I will check if anything, such as vitamin B12 was left out!

My diet is fine I think I eat pretty healthy, I'll be sure to check on that though ! Thanks would've never thought of it :)

loueldhen profile image
loueldhen in reply to Jazzw

I echo the importance of diet and stress needs to be managed.

jbthyro profile image
jbthyro

Hi KirstyC11,

Our son who is showing many symptoms, has also been told by the GP, who is 'treating' me for hypothyroidism, that she will not 'play with hormones' when it comes to an 18yr old! (now 19yrs and I am trying to help him myself because she washed her hands of any involvement!

They just don't understand thyroid problems! even though I have told her that our family have a genetic tendency to have thyroid issues.

People on this forum are very knowledgeable and will support you and try to guide you once you have your results.

I would book another appointment with your GP to stress how ill you are now that you've had time to think through what he/she told you last time and ask for further tests to find the root of the problem.

B12, VitD, ferritin and folate are the important ones but once you post the tests you have had others on here can tell you what other blood tests to ask for.

I totally understand how you feel about your studies, our sons brain fog is so bad that he has struggled all this year to keep up with his Open Uni studies and despite getting a deferral to start the course over again this year, he is already feeling like he is going to have to quit for now, which is going to impact him financially too! I've paid for private blood tests to prove that he has a thyroid problem and hoping to self medicate but that is another story.

Good luck with getting your blood results. We can all help you to move closer to finding the problem then.

We home educated our sons to GCSE level. If you have the course material and can work from home you probably won't be missing too much by not being in school. you could ask the teachers to send work home, practice papers etc or I can help you find them online if you post exactly which exams and examination boards you are doing. At least if you can work at home you can judge how well you feel and when is the best time to study.

Good luck and let me know if I can help in any way.

Jbthyro x

Clutter profile image
Clutter

KirstyC11,

It is protocol to retest thyroid levels 3 months after the first abnormal TSH to rule out a virus or non-thyroidal illness raising TSH. Arrange to have your next thyroid blood test early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking.

If you need thyroid replacement it is immaterial how young or old you are.

sulamaye profile image
sulamaye

I want to say that being hypothyroid isn't always the problem. Lots of people with m.e/CFS have slightly raised tsh as part of other hormone imbalances but taking thyroid meds does not resolve the problem so don't put all your hopes on this. I was hypothyroid for twenty years then hit m.e wall could not get out of bed and have addressed everything possible re: thyroid meds but am still spending 50% of my day in bed. Lots of people here think there is no such thing as m,e only badly treated hypothyroid. That's not true. M.e/ CFS has a far more complex and nebulous range of dysfunction.

I tell you this not to depress you but because if you do have m.e it is really important that you do what you can to help and there are lots of things you should not do, such as try to push through the feeling. Go on YouTube and look for secrets to recovery by the OHC yeah they are a charity that costs lots of money to access directly, but actually they put lots of useful videos up for free that explain diet, functional medicine, different types of tiredness and different stages and how at different stages you need to do different things.

I have spent a lot of money trying to recover over the last six years but the OHC optimum health clinic has been and continues to be the most effective. I work with one of their nutritionists who specialises in m.e. I wish I'd gone there first. So if you ever get to that stage go there first.

Good luck.

LAHs profile image
LAHs in reply to sulamaye

What is m.e.?

sulamaye profile image
sulamaye in reply to LAHs

Commonly known as chronic fatigue syndrome it was originally called myalgic encephalitis or m.e. I don't like chronic fatigue syndrome or CFS as it sounds like you are a new parent who is very very tired rather than so many other symptoms that halt your life with total cellular exhaustion as the backdrop.

SilverAvocado profile image
SilverAvocado

Another thing you can try with doctors is to go back very regularly and complain. Often doctors will not believe a condition is serious and long running until they see it for themselves. Try to go every week or two, and really emphasise the practical, like that you're giving up sports, taking special measures for exams, etc. Also be clear that you need letters /fitnotes for your school and exam board because your work is suffering.

But also I think you need to plan for being ill for some time. It will take some time for doctors to get this through their thick heads, and you may turn take several months to get on the correct dose. So you really need to start getting the school on your side, arranging to do some work from home or get any extra support in exams that you can. There's a possibility you may need to redo a year or go part-time depending on how bad things get.

Also, trying to struggle through and push yourself to do extra activity will only make you more ill, cut down as much as you can. Things like sport are using up the thyroid hormone you've got very fast. If you cut down to really the essential activities, you may find that you're able to do those in a lot more comfort as you've saved up the energy. Resting in between activities can make a big difference. Even just a ten minute sit down, or lying down for things like TV that you might otherwise have sat up for.

Hillwoman profile image
Hillwoman in reply to SilverAvocado

Very good advice.

HLAB35 profile image
HLAB35

Hello, I totally sympathise. The laryngitis raises alarm bells with me, because, guess what, it's right next to your thyroid. It could of course be Hashimoto's (antibodies to be checked in blood results), or, given your history a very nasty infection that's attacked your thyroid / larynx. Check out the symptoms of acute and sub-acute thyroiditis - it takes a bit of digging as most doctors haven't heard of it!

Muffy profile image
Muffy

As has been said on here, make sure you have your blood drawn as early in the day as possible, preferably 8 -8.30 as that is when your TSH is higher.

Are you having any period problems as this is also a pointer to hypothyroidism.

Do you have any other GPs at your surgery? Certainly worth trying a different one if possible.

Muffy

caledoniancat profile image
caledoniancat

Did your Dr test iron levels? Sitting and standing blood pressure, sodium, potassium and cortisol levels? You could be anaemic but being hypothyroid can also be secondary to hypoadrenalism and in the latter the addition of meds for being hypothyroid without treating the adrenals could make you a whole lot more sick. The symptoms you list are amongst those seen in hypoadrenalism (Addison's disease).

If it isn't possible to defer your exams you should explore the appeal system, because you should be able to appeal a less than optimal mark on health grounds.

madge1979 profile image
madge1979

you need to see another doctor Luvvie ... why does he think you should continue feeling like that ... take a parent or older relative with you

and don't take no for an answer .. it's Your health not His.

Stupid ........ doctor M

Good luck Luvvie mx🌹

KirstyC11 profile image
KirstyC11

Thanks for all the replies! I went to school yesterday and my mam went down to my GP because she's worried, I didn't know she was going. My GP told her my TSH level is 5.68 but my T4 is normal at 10. He said it's not normal that I'm so tired and gave her a letter for the hospital and told us to go to A&E for more blood tests.

Do my blood results mean I have sub clinical hypothyroidism? I was reading about it but my GP never mentioned it to my mam, I know there's debates on whether to treat it or not. I'll be going to A&E next week just to be sure nothing else is wrong.

Almost all of the teachers I saw yesterday told me I didn't look well and that I should look after myself and not come back in till after exams. So that's settled at least!

humanbean profile image
humanbean in reply to KirstyC11

A TSH of 5.68 is much too high and it does explain why you are so tired. TSH for healthy people is usually around 1 - 1.5. People who are hypothyroid often need a TSH which is lower than that to have any hope of feeling well.

Your Free T4 of 10 without a reference range is not very informative because reference ranges for Free T4 vary so much. A result of 10 with a reference range of (12 - 22) is much worse than a Free T4 of 10 with a reference range of (7 - 16), although neither result is actually good.

Please ask for a paper copy of your blood test results from the last couple of years and start asking for copies every time you have a test.

Another possibility is that you might be able to see your results online if your practice has made the option available to patients. (Many of them haven't.) If results are available online, go to your surgery with official proof of identification e.g. a passport and ask for access to be made available to you. If your surgery works the same way as mine you will be given a page of codes needed to allow you to register online.

HLAB35 profile image
HLAB35

Kirsty, you said, 'Edit- just to point out the severity of the fatigue- walking up the stairs gives me heart palpations and I need to catch my breath, and exercises I did regularly without problems make me almost pass out . I'm a healthy weight for my height and I played sport for my country during my early teens' - if we go with the fact that something infected your larynx (right next to the thyroid) and take into account your age as well and your previous high achieving outlook - could this be a case of post viral illness or M.E? You'll probably need to switch doctors as they'd have to run a lot of tests to rule out anything else (e.g. rheumatic heart disease / adrenals) first.

It'd be worth it if you were to call or email A.Y.M.E. (as you're a student under 18 you'd qualify for help) and ask if your symptoms are in any way familiar to them and how to get help.

HLAB35 profile image
HLAB35 in reply to HLAB35

Please check this out..

drmyhill.co.uk/wiki/Hypothy...

Eddie83 profile image
Eddie83

That doc is a quack. Hypothyroid can occur at any age. I urge you to get a comprehensive thyroid profile (TSH/FT3/FT4/rT3/TPOAb/TGAb) from a competent doctor who understands the role of anti-thyroid antibodies, and understands the bottom line on thyroid treatment is your active hormone (T3) level. Don't let brain fog from hypothyroid ruin your future - it ruined my career before it got fixed.

HLAB35 profile image
HLAB35

I agree that you should get a full thyroid profile...

A doctor who's been prescribing T3 as well as thyroxine for her (adult) patients because she does actually do all those checks for a full thyroid profile shouldn't be knocked.

Brain fog is appalling - and yes, it is down to low T3, but also to low B12, Magnesium and a host of essential vits and minerals necessary for T4 to T3 conversion and the methylation cycle.

KirstyC11 profile image
KirstyC11

More blood test results just came back( I wasn't aware there were any more to come back) and I have vitamin D deficiency. The symptoms associated with this are similar to the symptoms I've been having and my GP has prescribed Desunin 800 IU tablets 2 to be taken daily. I've to go back in 3 months for a follow up blood test.

This still doesn't explain the high TSH level so I'm going to the hospital this week for further tests(hopefully a full thyroid panel) just to make sure all bases are covered. Also going to collect my prescription and get a printout of the blood test results I've had so far so I can take them to the hospital just in case. Will post results then.

HLAB35 profile image
HLAB35

Look forward to seeing them. Your current results show a glaring B12 deficiency - in many countries a 500 ng/l reading is the lowest acceptable ... look up symptoms of pernicious anaemia. It goes hand in hand with hypothyroidism and other autoimmune issues (including M.E.) they're not mutually exclusive. Given your low B12 and high TSH, I can almost predict your free T3 is probably very low too, so I'm hoping that you get the full thyroid panel soon!

KirstyC11 profile image
KirstyC11 in reply to HLAB35

My ESR is 25 (range 0-10) ALT and AST are high (46 and 34 range 6-32) and my CRP is 1.1 (range 0-5). Lots of my results were in the low range while still being "normal" because they're in range. Was in the hospital today and the doctors and nurses kept saying my bloods from the GP were normal. I got my bloods done again(12 vials) and a chest X-ray because I was tachycardic. X-ray was clear and some tests came back which were also clear. They tested antibodies which the GP didn't test so maybe those results will have some answers. Nurse said it's possibly glandular fever, but I'll just have to wait and see now😏

HLAB35 profile image
HLAB35

Inflammation and liver problems from these results could indicate an underlying infection that's gone undercover.. like in M.E. /CFS so the glandular fever (or flu?) theory does stand and it's knocked your thyroid off balance too - there is also autoimmune hepatitis. It's certainly indicative of something going on that they will try and get to the bottom of... if they're not going to look at b12 again it's definitely worth supplementing with sublingual methylcobalamin (the best sort) as it should help with the brain fog - best taken with or part of a B-complex as it works best with methyl-folate. Also consider magnesium (e.g. magnesium taurate), co-enzyme Q10 and potassium either in food or as supplements as tachycardia is scary and these should help with that! Make sure that in addition to high dose vitamin D (you were low) that you take vitamin k2 with it. I really hope they check your t3 as well, as you'd almost certainly benefit from that too, but, not sure if they prescribe it to under 18's at all?

You may also like...

Thyrostim, iodine, t-convert levothyroxine and elevated TSH level

get out of bed.). However, following a blood test, I was told by my new gp, that my tsh level is...

TSH levels too low and as meds are lowered TSH has lowered as well

My initial TSH levels were 27.5 when I got my diagnosis about 8 years ago. Have been on Armour...

Is TSH level of 0.01 too low for uat?

ago when I was tired etc. Is this dose and levels potentially dangerous for me? I have tried...

Graves and TSH levels too high on Carbimazole - help!

it mean for the TSH to be high and how do they get it down?! Waiting for a call back from the doc....

Slightly elevated TSH

blood tests have shown. Slightly elevated TSH but no one seems concerned about this. So I have...