Hypothyroid - TSH level guidelines

[June2008]

I have been trying since Jan to get adequate treatment for hypothyroidism. I am taking 125mg levothyroxine and my TSH level is 3.87. I have a gp appt in a couple of weeks (my gp has looked at the levels and said no further action) however I would like to persuade her that I should try 150mg to see if I can get my TSH lower and reduce my symptoms.

Does anyone know where I can find advice or recommendations that being at the lower end of the TSH range is preferable? I am not sure about how open she will be to just trying to alleviate my symptoms.

My history: a large mass removed via surgery along with half my thyroid in 2011. It was over 10cm at its widest, pushing my trachea out of place and starting to go under my collar bone. Increasing symptoms led me to get tested in jan this year, when my TSH was found to be 36! I do feel better than at the start of the year but still not normal.

Any help gratefully received!

Thyroid problems seem to be woefully under treated in the UK, June, and most doctors will only go by lab numbers, unfortunately. Have a look on this site, www.thyroiduk.org.uk/tuk/index.html, full of useful info, and I hope you can persuade your GP to treat your symptoms, rather than numbers.
HTH

What you need is this:

www.amazon.co.uk/Thyroid-Disorders-Understanding-Anthony-Toft/dp/1903474191

Inside it says that a lot of people feel better with TSH at the bottom of the range and FT4 at the top and the author is so well respected it is difficult for your GP to argue with what he says.

Good luck!

There is a US site - think it's called 'about thyroid' run by a Mary Shomon who is hypothyroid. I seem to remember reading that the 'normal' dose is 1mcg for every pound of normal body weight.

However, although apparently the official approach is to put someone into a slightly hyper state and then reduce the dose in my own experience this never happened.

Also, according to the US research a normal level of TSH in someone who is being treated is well below 1 ie levels are totally different for people being treated and people who have never needed treatment.

There are loads of books on amazon, most of the good ones seem to be from the US, though.

I can remember talking to a gp about the social cost of badly-treated under active thyroid problems - she gave me a clueless look when I talked about women being loaded with anti-depressants and relationships breaking down when dp's and dh's considered that their partners couldn't be bothered to do things rather than that they were too bloody knackered.

It is acknowledged that at least 25% of the people who give blood have an underactive thyroid but are not being treated - and they insist that it's the normal range. Being cynical, I have wondered if it's the free prescriptions for life that stops gp's diagnosing. Not sure what stops them giving proper treatment, unless it's a fallacious belief that it's easy to treat. It seems difficult to treat well.

Btw, apparently, gallstones can be a side affect of the slowing down of the metabolism. So, if you start getting achy feelings just under your ribs, it could be the start of gall-bladder problems.

What's your T3 level? You could be taking all the levothyroxine in the world but if your body can't convert it to T3 you'll still be hypo. Get them to test this before bumping up your dose.

At 3.87 I'd be losing it.

Sorry I can't find it now, but medical research done several years ago showed that 0.3-3 for TSH was the recommended range. When I was pg (2012) and under consultant care for the thyroid, he said they always look to a TSH of under 2 'to be safe' and also to feel well.

I thought it was best to be around 2 aswell. Last time mine was checked it was 1.9. I have been hypothyroid for years and this last time the doc said I was slightly hyper so has adjusted meds from 125mcg to 100mcg ( I was occasionally getting a really rapid heart beat and the shakes ) and getting retested in 6 weeks.

I wish I understood levels etc better, everytime my doctor talks about it, it completely goes over my head.

Hi there,
Just wanted to update and say thank you for the advice. I saw my gp today who was fairly reluctant to up my levothyroxine, but thanks to the Thyroid Disorders book mentioned above I was able to persuade her. I think she knew I wouldn't be leaving until she agreed! The 150mg is on a three month trial initially but assuming the bloods come back within range I think she will be willing to go with it. Thanks again!

I think levels with thyroid are so personal. I am a wreck if I drop too low. I have to keep my levels above 4, ideally 5 otherwise I get massive attacks of anxiety. I would hate to think what I would be like if I was 0.3.

Excellent news. Another victory for Dr Toft who has also gone on record this week saying that we shouldn't over-rely on TSH.

OP - remember to get your bloods done as early in the morning as possible to pick up your TSH on the highest point of its daily rhythm and, if you take your levo in the morning, wait until after your test. If you take your levo before bed, skip the previous night's dose. That way you'll get a truer test result.

Interesting what you say about dropping too low and a link with anxiety, I will watch that one. Mine dropped to 0.10 which was ridiculous and all I suffered from was overheating. So i reduced my dose and felt human again. But I've been anxious all summer, put it down to other things, but as I was overheating again I was tested and found to be down to 0.3. Have reduced my dose again and will be retested in 4 more weeks.
But it will be interesting to see if I am less anxious. How fascinating that we all feel different at different levels.