Introducing myself

[RustyMary]

Hello everyone. I have written most of this on a thread in reply to someone else newly diagnosed (cobbles), but I thought I should put my own thread up instead of usurping hers.

I went to the doctor 3 weeks ago, with chronic indigestion, to be given a blood test and found I've got hypothyroidism. My blood tests were:

TSH 240 (0.55-4.78)

Free T4 2.1 (11.5-22.7)

Free T3 1.5 (3.5-6.5)

When I looked it up, I found I had all the symptoms but they had all been hidden by my medical history of allergies, asthma and alopecia. I am British and live in Slovenia, and count myself lucky they are so on the ball here (they routinely test all three hormones, for a start!). I was sent to the endocrinologist the next day, and put on 25mg for 2 weeks, then 50mg for 2 weeks, then 75mg until I go back to the specialist in June. My own GP has asked for another blood test at around 3 weeks - that'll be the middle of this week.

The initial relief at having a diagnosis that explained all my vague and quite general symptoms gave way to an awareness of how very ill I was feeling. Both my own doctor and the endocrinologist impressed on me that although I would get better my results were very bad and I must rest - no physical exercise, in particular. I'm someone who takes regular exercise and in fact 2 days before my diagnosis I had ridden 22km (about 15 miles) on my new bike! I had to stop and rest on the way home and my husband came back to look for me - oh, I'm not very fit yet, I said! Knowing what I know now, I'm amazed I didn't collapse.

The first few days were ghastly - I felt so very ill and I was also terrified that because it had been left to get so bad - neither my doctor's nor my fault, my symptoms were so well disguised as other things - I had done some permanent damage. This still scares me in the black holes of the night - my digestive system was going so slowly it had practically stopped, and although it is better it's still not normal. On the other hand, some symptoms like my incredibly dry skin, which I'd put down to being just post-menopause, have already started to improve. Oh, I should say I'm 6 days in to the 50mg dose, 3 weeks post-diagnosis. I do already feel very considerably better than I did 2 weeks ago, but I am very up and down - I had a few bad days last week, because I think my body wanted a higher dose at around 10 days, but I waited the full 2 weeks as told. After 4 days at 50mg I felt much better so I assume the 50mg is starting to kick in - roll on 75mg!

I've done a lot of reading and have been appalled at all the horror stories on the internet from women who have been struggling to get a diagnosis for years, whose doctors won't even do proper testing. But then I realised that most people who write on forums by definition are having a bad time. At the moment, what I need to do is rest, get better, get some thyroxine back into my system, and then see where I'm at. I'm experiencing a lot of strange twinges and tingles which I assume at the moment is my body slowly waking up again (I now know what the zombie apocalypse is about - that cold, doughy, dead feeling in my body which I hadn't noticed because it happened so slowly! It feels amazing to be getting all my bits back and feeling warm to the edges!) - the answer to that, I think, is patience. There will be time for other checks if necessary when my blood tests are nearer normal.

Please don't reply with scary stuff! I am scared enough already. I would really like to hear that many people do get better...

[editfmrt]

Welcome and no scary stuff from me

You are at the start your journey to wellness and, in my personal view, going about things in the right way. It sounds like you are getting good medical support too.

I believe the scary stuff only arises when there is totally inadequate support, knowledge and understanding from the medical profession. Not to mention misdiagnosis in the first place. Consequently, patients end up on a merry go round of inappropriate treatment, tests and medication that introduces new problems and confuses existing ones. A label of psychiatric disorders add to the downward spiral. Then it gets really scary.

If you get the right treatment and support, self educate about optimal doses, good diet and an awareness of associated vitamin and mineral deficiencies that can coexist with thyroid disorders, there should be no reason why you should not get your health back to what it was.

The dreadful stories can arise because of medical negligence and ignorance - they are not to be ignored because it can happen to anyone of us and not just in the field of endocrinology.

The systematic way you and your medical team are going about things is good news. If things go according to plan you will be on the road to recovery. If not the support from people on here who have experienced poor treatment and come though the other side will be invaluable.

[silverfox7]

Hi welcome to the forum. You will gain such a lot of info on here and on the Thyroid UK site. Think you have already done scary but your treatment is good and hopefully you will continue to progress. Patience is needed though as its very much one step at a time. If you try too much at once then its difficult to say what is helping and what isn't. Keep us updated with how you are feeling and post any lab reports and ranges as you will then get plenty of comments as to how you are progressing. Good luck and so glad your treatment is so positive, lots of us aren't so fortunate!

[Duchy82]

Whoa those initial blood results look horrendous im surprised you were still functioning at all.

When i was first diagnosed i spend more time sleeping and layered up in clothing and blankets shivering, never mind cycling many kms. Like you i started on 25 mcg for a couple of weeks then increasing to 50mcg etc, etc.

4years on i know have managed to lose 3st 8lbs (all the weight i gained and then some) and currently trying to reduce my dose a bit as my tsh is now suppressed and the gp is not all that comfortable with that and i found i felt a bit overmedicated myself in hindsight (I've been on 200mcg of levo at my heaviest, reduced to 175 and 150 now trying to reduce to 125mcg) and have been feeling back to normal for at least the last 2years but the first year is a bit of a blur to be honest i also had major brainfog.

When your dose is to a point where your tsh is between 1-2 at the least and your t4 high in range (my gp has never tested t3 so i wouldn't know where that should be or is in my case) have a look into having your iron, folate and vit b12 tested as these can be affected by hypothyroidism and certainly if low can give similar symptoms.

So many people do get better im one of them, unfortunately you don't see many of them on the forum anymore as they don't quite need the support and advice. I still pop up a couple of times a week to try and help those new to the forum, share my experiences and assure it does get better and give advice where i can, because it is not all horror stories give the levothyroxine a good chance it might take the doctor a while before you are on a dose right for you.

[HarryE]

Im sure you will get better, you've made a good start by looking for information early in your journey. I feel myself very fortunate to have found TUK very quickly and I am now almost back to normal, although still with some weight to lose. You should try to get vits/minerals tested and start getting those levels to where they should be, as they are likely to have taken a battering while your body was trying to cope. They will also help you use what thyroid hormone you have more effectively. Iron, b12, folate, vit d, magnesium, no doubt someone will suggest others. Good luck in your recovery xx

[asmile4u]

Welcome

Like you, before being diagnosed I was very active. I worked out everyday, did triathlons, inline skate marathons, and took day long bike rides with my teenagers. I just figured, with the tiredness, I wasn't in the best shape yet and set out to work harder. It took five years for me, but I am so happy that I have found out what is going on and am headed back toward complete recovery. I look forward to the days that I can participate in those activities again. I am so glad that you found the right doctor and are getting the treatment you need!

[RustyMary]

Thank you so much for all the kind replies that reassured rather than scared me! I'm so grateful to live in a time and place where I have hope for recovery, and also to have access to so much free information and help.

[helvella Administrator in reply to RustyMary]

It doesn't HAVE to be free! You can always choose to send a few of your hard-earned pounds in the direction of Thyroid UK and join up:

thyroiduk.org.uk/tuk/member...

Failing that, my bank account details can be sent to you by private message.

Rod

[RustyMary]

LOL helvella! There aren't enough of my hard-earned euros to send to anything at the moment, but when I have some to spare, this is where I'll send them!