Just been diagnosed with under active thyroid will it get better feeling old at 24!!! :(

[sophia17]

So as the title goes just been told I've got this illness! I'm glad I know what's wrong but reading threads ext on the internet seems to me rtf he tablets don't work! I'm on 100mg I think to start if with. I don't know weather that's to high or not! Any advice ??

[puncturedbicycle]

Welcome!

Don't worry just yet. The people who post here may not feel well on levo alone but thousands presumably take their tablets and get on with it. And there are people who find their gp is reluctant to raise their dose which may mean feeling unwell, so that just entails getting more meds, which is usually doable even if it takes some wrangling.

Are they putting you on 100mcg all at once? I wonder if your results were quite dramatic. Do you have a printout of thyroid test results? Best to get one from you surgery just so you can stay informed about how your treatment is going.

Did they tell you to take it on an empty stomach, an hour before eating and four hours away from iron and calcium?

[sophia17]

Hello yes strait away they started me on that level. It was getting to the point where I couldn't do normal stuff like chopping veg my hands and fingers would lock if you know what I mean. My muscles ached and I felt my body was just going to give out and I wasn't going to wake!

No I didn't ask for a print out but I will when I go back in two months time. Yes half a hour before eating! I know I probably won't feel myself again lol x

[puncturedbicycle in reply to sophia17]

You never know, you may feel better than ever. Who knows how long you've been hypo and acclimatising to low energy, aches and pains etc, and meds may make you feel brilliant. My mum was hypo on levo for prob 25 yrs or so and had pretty good energy throughout (held a job, exercised, etc) and when she tried ndt (natural desiccated thyroid capsules) it was like a new lease of life. She hadn't realised how her energy had suffered over time.

[humanbean in reply to sophia17]

Regarding your muscles aching and locking up - I had similar symptoms (although probably not quite as severe as yours by the sound of it) and they were much improved when I started taking vitamin D. I wasn't even severely deficient, I was in the "inadequate" range, yet I got symptoms.

I started taking 1000 iU vitamin D per day (which is slightly more than the recommended daily intake for supplements), and over a period of about 4 months my vitamin D levels actually dropped. So now I take a minimum of 3000 iU per day which is still a lot less than many people on here take, but I have improved a lot. There are people on here who take vastly more than me and they do well on it.

You really need to get your levels of iron, ferritin, vitamin D, vitamin B12 and folate checked. Get a copy of the results, including reference ranges, and then post them on here. Your doctor might tell you your results are "normal", but being in the reference range is not the same as being in the optimal range, and you may need to supplement to get your levels up.

[sophia17 in reply to humanbean]

Hiya thanks for replying yes my hands where getting bad, I work in a care home and was struggling to fasten pads ext, is there any specific brand of vitamins to take? Or can I just buy some, I will ask the doctor for a print out x

[Moggie]

You need to leave more than half an hour before eating - yes I know that is what your doctor and patient information leaflet says but take it from a fellow sufferer leaving half an hour is not enough. You need an empty stomach for the levo to work properly and eating after only 30 minutes will not be leaving enough time.

I always leave 2 hours before and after eating, as do lots of people on here, so maybe try this. Or better still take your meds last thing at night, just before you turn off your light, having made sure you haven't eaten, or had anything to drink except water, for two hours before.

Moggie x

[sophia17]

Thank you for the advice I usually take it around 6 am as I start we work at 8 am and won t eat till about 10.30 but when I'm not we working its usually about 8 before I take the kids to bbc school. I was just worried as bout my hands they seem to be improving but the cramp I'm left in agony does as anyone else have this? Well tbh I have every symptom they listed xx

[puncturedbicycle in reply to sophia17]

You may already know this but 'empty stomach' means no tea, coffee, milk etc, just in case you're leaving your breakfast until later but having cuppa in the morning.

[Moggie in reply to sophia17]

As has just been pointed out by puncturedbicyle nothing really does mean nothing except water - milk is one of the worse offenders as it contain calcium, which is a really problem for levo so if you continue with morning dosing then a cuppa before work is a real no.

You need to get your doctors to test the vitamins that have been mentioned as being low in some of these can cause cramping.

Moggie x

p.s. just a tip when using this site - if you use the "reply to this" button at the end of someone's comment to answer them they will get an email to say you have responded. It stops people missing your replies or any further questions you may have.

[sophia17 in reply to Moggie]

I don't really drink tea or coffee in a morning no time, I'm going to start taking them at night see how that works. I just don't understand how I've just got this before I had my second child I was fine xx

[Moggie in reply to sophia17]

Pregnancy is one of the worse offenders - no signs of the illness before and then full blown when your pregnancy ends, its quite common.

Moggie x

[sophia17 in reply to Moggie]

That's what I think it was so I'm still stuck with this for the rest of my life? X

[Moggie in reply to sophia17]

I don't consider myself "stuck".

I hold down a full time job, I have my grandchildren (all four of them with ages ranging from 18 months to 10) every other weekend, all weekend. I don't feel unable to do things I want to do - if fact I feel just fine most of the time - and more importantly for some on here to hear is that I am not on NDT or T3 I am on plain old levo.

The key is to get a good GP and all your vitamins up to optimal levels and to keep them there - yes you turn into a bit of a pill popper (I am on long term vitD and iron), and for someone who hated taking tablets that it hard, but apart from that, and watching what and when I eat I don't think my life is much different from pre-thyroid illness.

Hope the above has given you some encouragement and made you realise that you don't have to remain ill for the rest of your days - you just need to be very pro-active about your health, learn as much as you can about this illness and, hopefully, you will remain well.

Moggie x

[Clutter in reply to sophia17]

Sophia, women are more prone to thyroid illness because hormone changes triggered by puberty, pregnancy and menopause upset the thyroid gland.

Vitamins and supplements from Amazon or health food shops are good. Brands like Solgar, Now, Jarrows and BetterYou.

It's best to get tested before supplementing but if your GP refuses supplements may relieve some of your symptoms.

Once you're optimally medicated and properly supplemented you'll feel young again.

[SJaggs]

I was started straight away on 100mcg, my TSH reading was off the scale at >100 and now its down to 0.6. I was told that it is quite a high dose to start on as most people start on 25 then 50 and work their way up. Will warn you that I got some seriously bad headaches for the first couple of weeks of taking the levo. But it does get better!! Good luck!

[sophia17 in reply to SJaggs]

I actually don't know what my levels was but the day after having my bloods took they where ringing me but couldn't get hold of me so sent me a letter telling me to come in as soon as possible never been so worried x

[puncturedbicycle in reply to sophia17]

Bleurgh they don't half do some stupid stuff. No reason to frighten you like that. I don't know why they don't moderate their reactions somewhere between panic! and we don't care at all. How hard would it be to say 'you're not in danger but we need to see you sooner rather than later' - ? (Maybe this is a little unfair but I'm so sick of hearing stories about the stupid things docs come out with so I'm just feeling a bit jaded today I guess.)

[sophia17 in reply to puncturedbicycle]

Yes it was scary I got the letter on a sat so was worried all weekend I hope I feel just even 20% better when these start to work x

[SJaggs in reply to sophia17]

I had exactly the same, blood test on the Monday and message from the doctor on the Wednesday telling me I had 'a seriously under active thyroid' and needed to come and collect a script asap! Considering I had no idea what it all meant it was pretty overwhelming!! Found out my levels a few weeks later when I asked for a copy of my results.

[ladylefty45]

I have been on thyroid medicine for 40 years.. I started with 125mcg,,,, Can't even count the times that my meds have changed. As time goes on you will recognize the symptoms when it is off.... Being cold, Laying awake and cant sleep staring at the walls,uncontrollable crying jags and feeling really tired..... When you feel like this it is advisable to have your blood levels checked. because they can change quickly or go for longer periods.. Hope this helps you.

[sophia17 in reply to ladylefty45]

Yes I have been through that stage I'm just still trying to get my head around it all I don't understand these t3 ect x

[BeansMummy]

When I was first diagnosed, I happily plodded along taking my levothyroxine for quite a while. I didn't think I was unwell before I was diagnosed, and just thought it was age, menopause, overwork etc. I can't say that any of that changed when I was taking medication. I didn't find this site for a long time, and only found it when I was struggling with other new symptoms and started googling.

It was very overwhelming, I had no idea what all the abbreviations were that people talking about here, had never looked at blood test results and always accepted what doctors said, usually "everything is normal" when I was clearly becoming unwell. Lots of people seem to manage very well with thyroid disease and you don't often hear about them, but many of the people posting on here still have problems, so it can be so scary reading what they write.

I have very very slowly started getting to grips with most of it, and have been taking better control of my health. Some GPs are not that clued up on thyroid illness, and might not be open to acknowledging that you may need vitamin supplements, for instance. Even if you get referred to an endocrinologist, you may find that they are not that much better.

I am not in the slightest bit confident in advising anyone here what to do medically, but many posters are brill and their advice has been my saviour. Therefore, my only advice would be to take your time, look after yourself, read info on here so that you understand your illness better, and don't try to sort everything out all in one go. Oh, and don't panic!!

[sophia17 in reply to BeansMummy]

Thank you for the support I'm am going to do a lot of research (googling) lol it is very hard to get my head around just going to see how these tablets are and also ask the doctor what my vitamins are saying as I know they tested for them xx

[HarryE in reply to sophia17]

It is a lot to understand so don't worry if it all looks a bit much now. My advice would be to get a notebook! Its so easy to forget what you have taken when and what the corresponding blood results were, and symptoms. Mine is invaluable