Hello guys! I'm Tom 23 years old and new to this community, I would like to share a bit of my story. Lately I've been wondering if my thyroid could be my problem, and it would be awesome if you guys could tell me if my situation sounds familiar to this community in any way.
It started around 2,5 years ago when I had been feeling awful for a while, so I decided to go to my GP and tell them my symptoms. (I had a big list) When blood test results came back I found out that my vitamin B12 levels and folic acid were dangerously low. After finding this out I got myself a referral to a hematologist and proceeded to do all the tests possible to find out why this was the case. (I'm not vegan) All these tests came back and long story short I never found out why I'm B12 deficient. (No antibodies etc) After all of this I was put on regular B12 injections for at this point the last few years. (Very frequently) In this time the injections did help, but my symptoms never went away. So I did what anyone would do and keep requesting tests to find out why I feel so bad. To no avail sadly. I did find out I'm vitamin D deficient too. My latest blood tests show my cholesterol rising over time which I find very strange. There is no reason why this should be happening. Then there came a result which caused me to write this up for you guys.(TSH - 6.82 mU/L - 0.27-4.20) and (FT4 - 19.8 pmol/L - 11.0-24.0) keep in mind this blood test was taken at 2pm that day. I know this is not too high, but I requested more testing as I'm struggling for a while now. But they refused and told me to come back in a few months to see if it would change. The only other thyroid result I have is from the hematologist from years ago. And it was all normal back then.
Am I looking too far into this or do I tick enough of boxes?
My worst symptoms at this moment are the following:
-Exhaustion to the point of not doing what I love anymore because its too much effort. Stuck in bed all the time.
-Joint pain (mostly knees and fingers) It even wakes me up at night.
-Raynaud's
-Unexplainable throat pain. Nothing I can take regularly seems to help. So I just end up drinking loads and loads of water to soothe my throat every day.
-Dry eyes
-Altered taste and smell for the past years
Thank you all for reading!
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TomGreenR
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I think you need to have another blood test first thing in the morning before eating because the TSH is always lower later after you have eaten. When I had a blood test in February of this year and it was at the hospital because I think I was suffering from covid at the time. The test was taken about 3pm and my TSH was 0.27 and the doctor said it was a bit low. I then decided to do my own private test which was first thing in the morning and my TSH was 0.38. You do sound as if you might have hypothyroid but it is very unusual for a young man to get it although it does happen. Do any other members of your family suffer from thyroid disease? Just to add you need to test your TSH, T4, T3 and vitamin levels like B12, Iron and Ferritin, Vitamin D and Folate. You have already said you suffer with low levels so that can also be a sign that you have thyroid disease. When I was first diagnosed 10 years ago my vitamin D was 7 and I felt very ill. Once you have done the blood test come back here and post your results so members can advise you.
Thnx for the comment! I'll make sure to get my next test in the early morning for sure! I have no family history with it. Didn't know it was that unlikely for a young guy to have it.
Low B12 and low vitamin D strongly linked to being hypothyroid
TSH is much higher than typical population
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
How much vitamin D are you currently taking. What was most recent result
Ask GP to test folate and ferritin levels
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 .
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
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.
Hello! Thnx for the comment! based on my results do you think they'll give me the other tests? (They often dont like to if they dont have to sadly) Maybe i should order some myself if the next test is still around the same.
My latest blood tests show my cholesterol rising over time which I find very strange. There is no reason why this should be happening.
Then there came a result which caused me to write this up for you guys.(TSH - 6.82 mU/L - 0.27-4.20) and (FT4 - 19.8 pmol/L - 11.0-24.0) keep in mind this blood test was taken at 2pm that day.
And, the missing link between those two statements is: FT3.
So, let's have a look at your blood test results:
TSH - 6.82 mU/L - (0.27-4.20)
FT4 - 19.8 pmol/L - (11.0-24.0)
Your TSH is high, actually. A euthyroid TSH is around 1. Never more than 2. Over 2 suggests the thyroid is struggling for some reason. Over 3 is hypo. What's more, your blood was taken when the TSH would have been at its lowest, so what would it have been at 8 am and fasting? Higher, that's for sure.
However, when we look at your FT4, we see it's quite high - higher than is usual in a euthyroid person - and it doesn't correspond to your TSH. So, to clarify these strange results, we do need more testing, as you said. And, the three most important test to make sense of all this would be:
FT3
TPO antibodes
Tg antibodies
But, especially the FT3. T3 is the active thyroid hormone - T4 is basically a storage hormone - so the FT3 is the most important number, it tells you how much petrol you have in the tank, so to speak. Just testing the TSH and FT4 is a bit like measuring the water in the radiator and looking at the level of the engine oil, neither of them will tell you how much petrol you have.
And, I strongly suspect that your FT3 will be rather low. Why? Because of the second of those sentences: rising cholesterol levels. High cholesterol is a symptom, not a disease - and certainly nothing to do with what you eat! Cholesterol is made in the liver, and carried round the body in the blood by protein carriers to where it's needed. And, all that is controlled by the T3. If T3 is low, one of the things that goes wrong is the process of controlling cholesterol delivery and elimination. And, the cholesterol starts to mount up in the blood. Before thyroid blood tests were invented, checking on cholesterol levels was a means of diagnosing hypothyroidism. So, I think what your rising levels is telling us is that your T3 level is too low.
There's also the question of your nutritional deficiencies. When T3 is low, levels of stomach acid drop, meaning that digest of food and absorption of nutrients becomes difficult, and you start to have deficiencies. You already know that your vit D and B12 are low, so have you had your ferritin/iron tested?
So, all the signs are there. The problem is that doctors don't know enough about thyroid to pick up on them. But, maybe getting FT3 and antibodies tested - high levels of antibodies will confirm autoimmune thyroiditis (aka Hashi's) - will give them a nudge in the right direction. Fingers crossed!
Thanks for this amazing comment! What you said makes sense as to why my T4 could be this high. And the correlation with my deficiencies and cholesterol. Very useful info to advocate for myself at my next appointment!
(TSH - 6.82 mU/L - 0.27-4.20) and (FT4 - 19.8 pmol/L - 11.0-24.0) keep in mind this blood test was taken at 2pm that day. I know this is not too high, but I requested more testing as I'm struggling for a while now. But they refused and told me to come back in a few months to see if it would change. The only other thyroid result I have is from the hematologist from years ago. And it was all normal back then.
A couple of points .....2 pm is the lowest point of TSH in the day. So it's safe to assume that had your test been at 8/9 am your TSH would have been higher , by how much we can't know.
(TSH is Thyroid Stimulating Hormone ~ higher number means the pituitary is asking louder for more thyroid hormone to be made, 0 means "there's too much , stop making any for a while")
20yrs ago I was diagnosed and treated with Levothyroxine with;
TSH 6.8 [0.36-4.1]and Total T4 91[65-155] my Free T4 wasn't tested. but my point is , similar to you ,T4 was comfortably within range, and TSH just over range. This is 'sub-clinical hypothyroidism'.
but they refused and told me to come back in a few months to see it it would change
This is the correct course of action, NHS guidelines recommend a further test 3 months apart after the first one with TSH out of range, to rule out temporary self resolving issue.
My first test was TSH 5.7[0.36-4.1] TT4 94[65-155] so as you can see , on the following test the TSH had risen further and the T4 had fallen , consistent with worsening hypothyroidism.
But the thing that made them decide to treat even though TSH was not too bad at that point was that they tested TPOab (Thyroid Peroxidase antibodies) which are specific to autoimmune thyroid disease and they were extremely high 2499[0-50] they repeated this test a few weeks later to confirm and it was >3000.
I was not over weight , but had slowed return of ankle reflexes, and felt like i was a brain dead, aching zombie in the arctic circle, increasingly badly over about 3 years since having a baby, which often precedes hypothyroidism.
So i recommend you push for another test after 3 months have gone by, (they will refuse one before that) And at the next one ask if they will also run a TPOab test. The vast majority of hypothyroidism is autoimmune in UK.
Regarding your old thyroid test that was "all normal back then"..... The TSH reference range goes much higher than is really normal for most healthy people, so if it was under 2 then yes it probably was 'normal'... but if it was over 3, then even though 'in normal range' , it may well have already been showing signs of wanting more thyroid hormone.
Often GP's tend to wait until TSH is over 10 before they treat, but if symptoms of hypothyroidism are impacting daily life, NHS guidelines say that a trial of Levothyroxine MAY be initiated after they have 2 out of range TSH's taken 3 months apart.
They do not require the presence of over range TPOab , but it does help in convincing them, because raised TPOab indicate increased probability that the person would eventually become truly hypothyroid with over range TSH AND under range fT4, if left untreated, so they are less worried about the responsibility of starting someone on life long hormone replacement .
Don't know if it varies but mine was high as in overactive and the GP told me to have another test in 8 weeks, which was higher so referred to endo then, waiting to hear from them
So worth checking with your GP, as I thought the timeframe was 8 weeks for the second test It's not very helpful for them to say come back in a few months, some people may leave it 4 months then!
Different guidelines apply for overactive thyroid , as the high hormone levels are potentially dangerous (as opposed to the slowing down of underactive thyroid, which is equally horrible , but not immediately dangerous)Endo' are involved in treating Hyperthyroidism , but would not get involved in Hypothyroid cases, unless there were serious problems as treatment progressed (and even then you'd have to insist on seeing one and they might refuse). Hypothyroid diagnosis and treatment is dealt with at primary care (GP) level.
"high as in overactive " this would be the actual hormone levels that were high (fT4 and fT3) You would have had a low TSH (Thyroid Stimulating Hormone) if thyroid was overactive.
People with underactive thyroid have low hormone levels fT4/3 and high TSH, because TSH is increased to signal thyroid to produce more thyroid hormone
they should be ............ but , nope , they might get about an hour on the whole thyroid issue in medical school.... most of them only know ;
If TSH high = hypo , Treat with Levothyroxine till TSH is 'in range', problem solved, if patient still complains of symptoms offer antidepressants.
If TSH low = hyper, refer to endo.
No really .... that's it.
And many hypo's on here had to wait years, because even though you're quite likely to be hypo once your TSH gets above 3, they often won't do anything until it gets to 10, even though they have a 'normal range' of about 0.5 -4.5 ish......
Pah and we all know they are so quick to dish out anti depressants, I think thats ridiculous. Then people are just going to end up on meds for longer as they can be hard to come off. Well at least this forum helps educate people it is all new for me too. I find it often feels like GPs want to rush you out, you are meant to get 10 mins but its so hard to find a good GP nowadays who takes on board concerns.
This is very usefull information! Didnt know this. So i'll be under care of my gp if my tests get worse anyway? Let's pray my gp knows alot about it then.
"Let's pray my GP knows a lot about it then" The chances of this are slim ... not impossible though , the one who diagnosed me knew about slowed ankle reflexes, but most of the chapters that tell of physical signs /symptoms of hypothyroidism have been removed from the medical teaching. And the current dominance of the TSH test over fT4/3 testing means they misunderstand a lot.If i'd seen a different Doctor that day i'd have probably been sent away for years without further testing because i 'wasn't fat enough to be hypo' .
If you spend a few weeks reading through old posts/reference papers on here, you'll probably understand more than most GP's do on the subject.
And this will be a good use of your time, i wasted years believing what they say, when i now realise they just don't like to say " We don't understand much about it, and it's not very interesting or spectacular, so we're not interested in learning"
GP understanding and recognition of thyroid problems can often be woefully inadequate ......despite there being almost 2 million people in U.K. on levothyroxine.....and many more who probably should be treated...... but can’t get diagnosed
Tom, all the previous posts offer great advice so I won’t repeat. What I did want to add is that I was diagnosed at 25 but was hypo for several years before that. It creeps up on you slowly until it suddenly got to really bad (at least in my experience).
Main thing to do is repeat the blood tests and do all the ones suggested, even if you have to spend £100 privately.
Do not suffer like I did for 2 years feeling like a complete zombie. Get the evidence and get treatment ASAP.
Hopefully it may not be your thyroid but results suggest it’s possible. Is there anything else going on in your life that could be causing your symptoms: stress, lack of sleep, poor diet (including eating too much processed food), too much alcohol, recreational drugs. Of course no need to answer this publicly but one of these could be the culprit.
I hope you are doing well now after all of that! Sad to see so many having like years of looking for answers. I don't do any drugs and I don't even drink any alcohol. I generally take good care of myself so I doubt it. I'll make sure i get to the bottem of this!
Do you eat a lot of crap (I used to in my early 20s)?
You could try cutting out everything but home cooked and cut out wheat, dairy and other allergens just in case it’s something “easier” than thyroid disease
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