My GP refused to treat my hypothyroidism? - Thyroid UK

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My GP refused to treat my hypothyroidism?

10 Replies

So my TSH level is only 4.2 and here the reference range is 4.8, but i'm experiencing almost all the symptoms and I can barely manage my life like this. Last year my TSH was 2.5 so it's obviously increasing. My GP said that it's still in normal range so she won't start the treatment. My question is , what should I do? Should I wait until it get's worse? or should I search for another place where the ref. range is lower? Or is it the lowest it can get? Thanks for the answers and sorry if my english is bad!

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10 Replies
Ruthi profile image
Ruthi

If she won't give you a trial of levothyroxine you could ask for a referral to an endocrinologist. GPs (well most of them) seem to be ruled by numbers rather than commonsense, or, God forbid, compassion.

When I was diagnosed my GP told me quite frankly that the local endo wouldn't treat with my TSH of 3.6 and raging hypo symptoms, and I went private. Once she had a letter from a consultant she happily wrote out the prescriptions.

bluebug profile image
bluebug

Unfortunately under NICE guidelines the GP doesn't have to start you on levo until your TSH reaches 10. While the guidelines do state they can trial you on levo if your level is over 4 and FT4 is in range, many GPs ignore that. They also think wrongly that you are more susceptible to heart disease if you take levo when the association is the other way round.

Anyway the best thing to do is email Louise - louise.warvill@thyroiduk.org and ask her for a list of GPs, both private and NHS, who are likely to treat you. There may be one in your area.

Also if you are from abroad and go home frequently or for longish periods it may be better seeing if you can get treatment there as not all countries are as backwards as the UK.

diogenes profile image
diogenesRemembering

GP's unfortunately have no understanding about what a TSH reference range means. it does NOT mean "if you are in the reference range you are therefore normal". The reference range is a range of probabilities not certainties. In the middle of the range you are most likely to be normal but as your numbers go further up or down the range they progressively are less likely to be normal. I have said this many times and say it again. Reference range limits are NOT goalposts, within which you are normal and outside not. They are shadowy possibilities, so that there always should be a grey uncertain area towards the top and bottom of any range. You are in such an area, and casual dismissal by an doctor is frankly wrong. The likelihood of you at least being thyroid-stressed is high. GP's don't understand the statistical nature of a range and instead adopt a false "all or nothing" approach.It is this that bedevils routine thyroid diagnosis by people who don't use the available information properly. Incidentally the limit of 10 units that are the present guidelines for action are coming down steadily, without of course any admission or apology for the harm done in the past.

Angel_of_the_North profile image
Angel_of_the_North in reply to diogenes

Surely the TSH range is a skewed distribution, so you are statistically less likely to be normal even at the "half way" point number wise, as most points cluster around 1.2 (and less likely to be abnormal even at the low end of the range for the same reason).

diogenes profile image
diogenesRemembering in reply to Angel_of_the_North

What we do to normalise the TSH range is to take logarithms of the values and plot those. Now you get close to a symmetrical distribution. Looking at the skewed ordinary data and taking the number with the highest number of subjects gives you the median. Transforming into logs and getting the peak of the symmetrical curve is the mean. These two aren't exactly the same. In this case the mean will be slightly higher than the median. Say about 1.6 v 1-1.2.

Clutter profile image
Clutter

Peacebow,

When you have your next thyroid blood test make sure it is done early in the morning when TSH is highest, and fast (water only) as TSH drops after eating/drinking.

thyroiduk.org.uk/tuk/diagno...

Anthea55 profile image
Anthea55

Your English is fine!

One option might be to get a set of private blood tests. Blue Horizon Thyroid plus eleven is often recommended here.

thyroiduk.org.uk/tuk/testin...

This has many tests which your doctor doesn't do. You can then take the results to your doctor and hopefully get treatment. If not you might try seeing a different doctor.

humanbean profile image
humanbean

Do you live in the UK? The suggestions we can offer are often country-dependent. What is true for the UK (where most of the members live) might not be true elsewhere.

SlowDragon profile image
SlowDragonAdministrator

Do you know if you also had thyroid antibodies tested. If they came back high, This would be autoimmune thyroid - called Hashimoto's

If these antibodies are high, even if the thyroid TSH test is in range (below 10), and you have symptoms then the Government /NICE guidelines do recommend that GP should start thyroid replacement - Levothyroxine (Levo)

If you can't get GP to test - then like many of us you can get tested privately

thyroiduk.org.uk/tuk/testin...

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/about_...

deexxx1 profile image
deexxx1

As an interesting aside, recent research has shown that if you are hypothyroid and your gp maintains it in the mid to high normal range, that you are a LOT more likely to develop type 2 diabetes.

The sad fact is that we still don't understand the endocrine system other than on its most elementary level.

For myself, several gps in my practice refused to treat me when I was borderline hypo. Luckily my old retired gp returned as a locum and was horrified! Started me on Levo and referred me, where they agreed! So get yourself referred - if you have to pay privately. That said, thyroid treatment at consultant level seems to be as much of a lottery as at GP level.

For me response has been poor on Levo. My thyroid 'went' following routine surgery. Post-levo I've spent the 16 years since missing 30-40 % of my normal energy. Pleaded with GP for natural thyroid but refused. I did buy it off the internet for a while (and felt better) but it's just too dodgy these days buying stuff like this online. Asked a consultant this year (private) who just shrugged and said it wasn't the thyroid and that something else had gone wrong during the surgery.

Great, thanks guys for 16 years of misery and the best you can do is shrug. There may be nothing that can be done about it, but it would be easier to live with if I had a reason instead of 16 years of shrugs !

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