Some advice please only 8 months diagnosed

[EmmaE]

Hi all, I was only diagnosed in October last year as having an underactive Thyroid after years of feeling unwell after having my first child and worsening after my second child.

After several courses of antibiotics and begging my GP for blood tests etc they suspected PCOS and just happened to tick the Thyroid function box too. My first set of results came back as:

TSH: 26.5

T4:9.2

I was put on 100mcg Thyroxine and sent on my merry way with no guidance just to come back in 6 weeks. My following test showed:

TSH:16

T4:12.4

and was upped to 150mcg levythyroxine

6 weeks later:

TSH: 6

T4:15

My doctor then decided not to up my meds anymore and to give me an antibodies test which showed Hashimotos and to come back in 9 months time. I asked for a T3 test on two occasions from different doctors as I don't feel that much different. I take vitamin supplements to help me feel better otherwise i have a foggy mind.

My body is completely failing me and since my diagnosis have had 7 lots of antibitoics (currently on 8th which is to last 6 weeks) as I am now also under an ENT and just had a scan on a lump in my neck which is an enlarged lymph gland (there are also ear problems involved). I now have to wait 3 weeks to return for results and next steps with the ENT. I've seen a consultant for the persistant pins and needles in my hands and feet to establish if symptoms are carpal tunnel or thyroid related, plus physio for an unexplained swollen knee and joints I can't help thinking if only I could get the T3 test done all my other ailments would go away. Wishful thinking I know but some advice on what I should do next or steps I can take would be gratefully received. I am 32 years old with two small children and would love to find some light at the end of what seems like a very dark tunnel! Thank you.

[RedApple Administrator]

Emma, Your GP should not have left you with a TSH of 6, which is outside the reference range. It's likely that many of your problems are caused by being under dosed with thyroid medication.

In order to alleviate symptoms, most hypothyroid patients need their TSH to be at the lower end of the reference range at 2 or below. Free T4 needs to be in the upper end of the range or even slightly above the range.

Things you can do if you're not already, are to ensure that you always take your thyroxine first thing in the morning with water, and don't have anything else to drink or eat breakfast for at least half an hour. This will ensure maximum absorption of your dose.

Don't take any other medications at the same time as your thyroxine. Most especially don't take vitamin pills for at least 4 hours after thyroxine as most vitamin and mineral pills contain things like iron and calcium that block thyroxine absorption.

Go back to your GP and insist that your dose is increased until you have reached a point at which your blood test numbers are much nearer those I've described above. Hopefully you will also then be seeing many of your existing symptoms improving too.

<b>Updated on Jul 7 2010 11:12PM:</b> Please keep us posted on your progress... or ask for more help if you need it!

[Barbara]

I completely agree with Red Apple, you most definitely should not have been left with a TSH of 6! No wonder you are still having so many problems.

Frequent and slow to clear infections are all associated with hypothyroidism, as is carpal tunnel syndrome and also joint problems too. I had a lot of joint problems because my muscles were really weak and weren't supporting my joints properly.

Have you had your vitamin B12 levels checked? Low levels of this can cause tingling in feet and hands.

Get another blood test as soon as possible, if your GP won't agree ask to see an endocrinologist. It's best to have your test done as early in the morning as possible as your TSH is highest then; take your thyroxine after the test that day as it peaks in the blood for a while after taking it. If you do this each time you have a test you will have a clearer idea of your progress.

You could ask to have T3 done but the labs usually won't do this unless the T4 is out of range. They often won't do T4 if the TSH is normal either but do ask for this too.

When you get your results get the actual figures and the reference ranges too. Ranges vary across the country and you need the range appropriate to your test.

Some links which should help you:

acb.org.uk/docs/TFTguidelin... UK Guidelines for the Use of Thyroid Function Tests

tinyurl.com/yyodja An article and graph on normal TSH

Please let us know how you get on. If you reply back here, i.e. with your original question and answers, it makes it easier to follow.

Good luck!