Really abnormal blood results - do I need more urgent treatment or is the 'wait and see' approach ok? Worried about permanent damage.

[ebites]

Diagnosed 3 months ago - my initial blood test results showed TSH of 242.3 and T4 of 3.5, then two months later TSH of 94 and T4 of 6. Obviously it's improving but still way outside the normal range, so should I be worried? Do I need T3, perhaps? (I have Hashimoto's).

[PinkNinja]

I don't know whether you need T3 but your dose should be increased with some urgency if it hasn't been increased in the last couple of weeks.

Some people need T3 if they become very unwell as a result of severe hypothyroidism, so if you start to feel particularly bad you must see your doctor.

What dose of thyroxine are you currently taking. With a TSH that high, it is usually fine to start with 100mcg, provided there are no contraindications in your health (such as Addison's disease).

I would suggest getting back to the doctor for an increase.

Other things to remember are to make sure that your serum iron and ferritin are at good levels. For most people it seems that ferritin needs to be around 70-90, as a guide. There is recent evidence to suggest that it should be at least 50 for women and preferably higher. Iron is important for your body to activate thyroxine so it can be used. It is also important for it to get into the cells to be used to make energy.

I hope you get your increase soon!

Many people do very well on thyroxine. However, if you find that you are not feeling well on thyroxine when your bloods look good, you may need to add some T3.

TSH is not a very reliable test for people on thyroid replacement. There has been recent research to show this. It is best to use it in conjunction with your T4 and T3 if you can get this tested. There is also evidence that shows it is ok for your TSH to go below range provided it doesn't go below 0.04 and you don't have symptoms of being hyperthyroid.

Work with your doctor to find the right dosage and type of thyroid replacement but do ask questions and we will be able to point you in the right direction. A lot of doctors don't really have enough knowledge of thyroid disorders, but some are happy to be educated so it is always worth trying to work with your doctor

I hope you get to the right dose soon so you can start feeling well.

Carolyn x

[ebites in reply to PinkNinja]

Thanks so much for this long and thoughtful reply, Carolyn. I'm new to the site today and really appreciate the time people take to help each other.

I was initially put on 50mcg Levothyroxine and three weeks ago upped to 75mcg after the second lot of blood tests. I initially felt much better but in the last week or so am very tired again, starting to get cold, with dry, itchy skin and I'm feeling low mood-wise. I have no other conditions that would preclude taking (more) Levo, as far as I know.

I had more blood tests yesterday and am seeing my doctor next week to discuss the results, so I hope I'll be able to get an increase of Levo as I doubt I'm within normal range (I certainly don't feel 100%).

It's so hard to accurately gauge your symptoms when the main symptoms are tiredness, brain fog, depression and just generally feeling rubbish! It's all so subjective - I mean, you can only describe your (mostly invisible) symptoms to your doctor and hope they are sympathetic. If you've been ill for ages it's hard to remember what 'normal' feels like!

[PinkNinja in reply to ebites]

I'm glad you are seeing your doctor. I am surprised that you were started on such a low dose though given your high TSH. Hopefully you will get another increase of 25mcg, followed by another increase 4 weeks later. It is unlikely you will need a blood test between those two increases but would instead need one after the second increase. However, because doctors aren't given enough training on thyroid (there are far too many conditions to spend too long on each one, I suppose) they can be a little too cautious when increasing doses of thyroxine.

Hopefully you will feel a little better after the next increase

Let us know how you get on.

Carolyn x

[balla]

i was poorly when my TSH was75, can't believe yours was so high 242.3, i couldn't walk, or talk, and was so swollen , you poor thing sending you a hug . hope you get sorted out

[ebites in reply to balla]

Thanks balla, that's kind

I think I've been pretty lucky in many ways though. As far as I know 75 is still sky-high, and you must really have been suffering. Hope you are better now (comparatively I mean).

I'm coming to realise it's unusual (reading everyone else's posts), but physically I wasn't too different except for the tiredness (sleeping 18 hours a day!). I gained maybe a stone in a year, which seemed odd because I do tae kwon do and my weight has always been pretty stable. I had a slightly puffy face and was cold and a bit achey, but other than that it was all brain fog/mood problems and exhaustion. I went to the doc because I truly thought I was going insane/clinically depressed. It's good to finally know what the problem is!

[balla]

no what you mean, i gave up smoking in dec [lol every body said you must be ill] smoked 30 a day for long time 35/6 years , so i now i was poorly for about a year , so yer was good to find out what the problem is,and thank god wasn't the big C x