Quick introduction, I'm Jack, I'm 26 and perfectly healthy, except I've been recently diagnosed with Hypothyroidism. Basically, I've been doing a lot of reading around and I wanted to share my initial blood test results, as my TSH level seemed abnormally high:
TSH level - 196 mu/L (0.27-4.20mu/L)
T4 level - <3.0 pmol/L (10.80-25.50pmol/L)
I believe that because the TSH level is high and the T4 is low, this is Hypothyroidism primary. Is this right? My main symptom is fatigue, but I actually find going to the gym helps - it's one of the only places I actually feel normal (possibly due to endorphins). My diet is healthy, my sleep is good, but I do get periods where I feel down/depressed.
I've been prescribed 150mcg levothyroxine, however after the second day I experienced some pretty bad side effects (overwhelming anxiety - something I have never experienced before and was just horrendous). Since then my GP told me to reduce to 50mcg to build up a tolerance. Even after two days at this dosage I feel as though things are worse. I am wary of levothyroxine after reading some comments around here.
I just wanted to engage with this community really and ask if people think those levels are high/low, to understand when I might start feeling like my old self again, and just some general advice. Any advice would be much appreciated because I don't feel fantastic at the moment.
Thanks guys, and looking forward to chatting.
Jack
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JackS7
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Yup your GP started you on a rather higher dose than they should have.. it likely reflects his lack of experience in dealing with thyroid issues. And your NHS blood test neglects to show us your Free T3 levels, as well as the other stuff that's important (ferritin, folate, B12, D3 etc) If you have the means I would consider having your labs done privately at some point to get a better view of what is happening. The Thyroid U.K. site has both links to private labs, as well as a list of "thyroid friendly" mds available upon request.
Your starter dose of 50 mcg is usually for 6-8 weeks upon which you should have new blood work again and then the dose is adjusted up in increments from there gradually. Have labs done after fasting (water OK) first thing in the am and leave your dose of Levo for 24 hours prior - this gives the most accurate results.
Did your doc test for Hashi's? (Likely not). Levo is sometimes not tolerated very well. You may want to read up on NDT (natural Dessicated Thyroid). It's an alternative to Levo but I understand you cannot get a scrip for it in the U.K. so it would require sourcing online. (Not a big deal however as you can always ask the community here in a new post for details on that topic later). I'll post the first link for some reading on that. The second link is a good one for any newbie to read. It shows how results are posted here, then has a very good reply discussing nutrient levels and their importance in aiding conversion. (We often have malabsorption issues and it shows up in our blood test results, hence the importance of better labs).
The learning curve is steep. If we embrace the fact that we need to educate ourselves in order to treat our thyroid it can be both empowering and rewarding! X rusty
No I was only tested for TSH and T4, but that's because I went to the GP with symptoms of fatigue, so he tested for a bunch of different things. Vitamin D is normal, full blood count is normal, slightly high cholesterol but nothing to be concerned about. I will however go back and get the full blood work done for underactive thyroid.
It is early days for me so I'll see how I feel in the coming days, the main issue I'm having though is more emotional fatigue. Like, physically I feel grand - I can get out of bed, sleep is great, but I am emotionally drained all the time for no reason. That's what is affecting my life the most at the moment.
Thank you so much for the links though I'll have a crack through them tonight. I'lll get the blood work done and repost too.
I cannot link you to the physical symptoms of hypothyroidism as Thyroiduk.org.uk is having their system updated. There are many symptoms.
Your TSH extraordinarily high and 50mcg plus 25mcg every six weeks will soon bring it down and around 1 will be good for you. Many doctors think it is o.k. if it reaches somewhere in range - not so - it should be 1 or lower.
Thyroid hormones drive everything in our body from head to toe and our metabolism cannot work without sufficient T3.
Levothyroxine is T4 - a synthetic hormone which converts to the Active Hormone T3. It is T3 which is the energy in our receptor cells.
Blood tests have to be the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take afterwards. (food interferes with the uptake so always leave 1 hour after taking levo (with one full glass of water).
Ask GP to test thyroid antibodies, B12, Vit D,iron, ferritin and folate too. Everything has to be optimum.
Get print-out with the ranges and put them on a new post for comment.
150mcg levo seems a huge dose to start on although maybe your GP felt that you would be ok because of your age and fitness? Dont know this for sure...just guessing aloud.
I think you may find you feel worse before you feel better especially with the blood test results you have received and it may be a slow old journey to feeling well again. When i started taking levo i started on 50mcg. Levo suits most folk who are hypothyroid, however the ones it doesnt suit so well you will read about here amongst other places so dont be put off by what you read, its just that for some of us levo is not the complete answer and sometimes we need to address other issues like vitamin problems as well.
Hopefully your GP has told you to come back for a blood retest in 6 - weeks where it is normal to have a dose increase if you are still symptomatic, i expect you will need a fair few increases so you will have to try and bear with it and be patient! Easier said than done i know! I think its important to not overdo things too as this may set you back...pace yourself and try and take it easy.
Thanks for the response. Yeah i think because I've read around so much I've freaked myself out a bit and I just need to time for my body and my mind to adjust.
I've been on 50mcg for a couple of days and I still feel slightly odd but definitely getting ever so better I think. I'm a firm believer of zero negativity and a positive mindset, but it's so good to have a support group on here to talk to as well.
This has happened so recently as well that's the thing, as in a couple of months ago I was absolutely fine, and then one day it just hit me. Bizarre. Hopefully it'll be back on the mend though.
Jack, I have never seen a TSH level so high. (WELL not recently - my late Mum's were way out but that was a long time ago).
As far as I am aware it is dangerous to start on the full dose of Levothyroxine. That is why we start low, usually on 50mcg, and build up gradually. You should be retested and dose increased after several weeks. Most say 6 - 8 weeks but I've recently read guidelines which say 3 - 4 and a recent poster's GP did the latter.
When did your symptoms start?
Has your GP any idea why your TSH so high and T4 so low?
Levothyroxine takes some time to get into your system and it can take some weeks or even months to feel the benefit.
Why didn't your GP refer you urgently to an Endocrinologist?
Did you have an Ultrasound scan of your Thyroid? If not then I would ask for one.
You should also ask your GP to do blood tests to check nutrients levels in particular Vitamin D, B12, Folate and Ferritin. I would be asking for Full Blood Count and Liver Function Tests also. Perhaps GP did some of these? If you can get copies of all results with ranges and date of tests and add to post?
Have you any other symptoms?
Also, you go to the Gym? Sounds like your level of exercise is OK as you say you feel better for it. I am certainly no expert but have read on here that strenuous exercise may deplete T3. Worth bearing in mind?
Seems to me like your GP was so shocked by your TSH & T4 results and over reacted , in panic, by giving you large dose. Must have forgotten start dose low !!!
By the way - you also need following blood tests :
FreeT3 & FreeT4
Thyroid Antibodies - TPO & Tg
Endocrinologist would have arranged these. Probably 5 to 7 days before your first appointment. Mine also did a Short Synacthen Test to check my adrenals first.
All I got told was that I had symptoms and blood work characteristic to that of hypothyroidism and to start taking levo asap. I think because the TSH was so high my GP just thought good lord better get some levo in there quick - hence the cascade into hyper symptoms.
He didn't refer me to an Endo no, but I do trust him he's a great GP and hasn't let me down yet so we'll see what happens.
Full blood count, liver, and vit D all came back normal. I've spoken to him again and I'm on 50mcg at the moment, he then said to go up to 100 after a couple of weeks, and after 6-8 weeks come back in for the full blood test to see how things are going.
My main symptom is emotional fatigue, physically I'm fine - I have no problem working out, I have no problem getting out of bed or going to work. It's just I feel emotionally drained all the time. I have had a lot of stress at work recently, and at home, so I wonder if that might have played its part because this is a very recent thing for me.
The thing is, my initial symptoms weren't that bad, I was fatigued for sure and had muscle aches, but after taking levo things have started to tumbe. However, I think that might just be me coming to terms with it. We shall see anyway.
Thanks for replying though and I'll keep you posted.
Usually you would have a 2nd blood test before increase in Levothyroxine. Also it is only supposed to be increased in INCREMENTS OF 25mcg AT A TIME as far as I am aware. So , please be careful. I am not qualified, - perhaps someone more qualified on here will address this point. GPs are not all specialists in this. That is why we have Endocrinologist, - I would have thought.
Stress can cause health problems. Have you told your GP about this or did you just mention symptoms. Have you considered asking about having your adrenals checked out.
It would be very helpful if you could add in all your blood tests to this thread. Sadly labs may report 'normal' as blood tests results can fall just within 'range'. Please include ranges and dates of tests.
Hopefully, you will see your TSH come down and improvement in your symptoms over the coming weeks and months. One less stress!
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