I went because I have this feeling of inflammation in the neck or a feeling of expansion - specifically at my thyroid and it does make me want to swallow sometimes to see if it will go away. It doesn't interfere with me eating or drinking (a shame) but it does make me feel anxious somehow - what is my Thyroid doing - having its last throes of life? Who knows. She has agreed to get an ultrasound done - which is good news. I had an ultrasound about 4/5 years ago and my thyroid was very small and had one tiny nodule.
Bad news is that they want to reduce my levo from 100 to 75. This is because my last test result for T4 showed up as 24.3 (11.00-25.00) with a suppressed TSH of 0.01.
I didn't know that they were testing my T4 that day - thought it was for my liver - so I took my medication as normal and there was no fasting. I told the GP that and she said that I don't need to do that, that they accommodate levo in their results.... That's not what our protocol is, is it? And is that true?
Last few blood tests its been around 16/18 and that's with fasting and not taking the medication for 24 hours.
My T3 is 6.4 (3.1-6.8)
Do you think that I'm on too much levothyroxine?
I don't feel hyper, but the neck thing makes me wonder?
I am also taking ropinerole for Restless Legs - and I think that it might be making my body hold a lot more water - have constant water retention in my legs and sometimes arms - has anybody got any knowledge on that or is it a Thyroid thing?
One last question - my thyroid anti-bodies are always at quite the low end or below value - GP thinks not Hashi - is that right? Do you just gauge it on those results?
Yes, taking the levo that morning will have raised the result - my GP argued it does not matter but it does. As for being overdosed - how do you feel? I have given up on the numbers and go by how well I feel.
The ultrasound is a good idea and will show what the thyroid is doing now, and possibly put your mind at rest.
How is your blood pressure? Water retention is often linked to high blood pressure. I found drinking tonic water with quinine in it helpful for the restless legs, sometimes I even left out the gin!
Someone will be along soon about the antibodies, I dont take any notice of mine as I have other autoimmune things.
how do i feel - such a good question! i think some times i feel okay and then look at myself in the mirror and I'm horrified by how i look! Hands aren't shakey, don't think i'm anxious, but maybe i am? hands are cold and I'm def not losing weight but not gaining. blood pressure good. what does normal feel like?
I had an ultrasound about 4/5 years ago and my thyroid was very small and had one tiny nodule.
That sounds like Ord's Thyroiditis. In which case your thyroid could very well be inflammed. Ord's is Hashi's without the goitre. So, your doctor could be right, but for the wrong reasons!
my thyroid anti-bodies are always at quite the low end or below value
How many times have you had them tested? And, were both types of antibody tested: TPOab and TgAB? I've noticed that people with Ord's tend to have high TgAB, rather than TPOab. But, the NHS will only test TPOab.
Besides, antibodies fluctuate all the time, so one or two tests can't completely rule it out. What's more, a certain percentage of Hashi's people never even have over-range antibodies.
I am also taking ropinerole for Restless Legs - and I think that it might be making my body hold a lot more water - have constant water retention in my legs and sometimes arms - has anybody got any knowledge on that or is it a Thyroid thing?
Water retention is a thyroid thing, but that's not to say that the ropinerole isn't making it worse.
How is your iron/ferritin? Restless Legs are very often due to low iron.
I didn't know that they were testing my T4 that day - thought it was for my liver - so I took my medication as normal and there was no fasting. I told the GP that and she said that I don't need to do that, that they accommodate levo in their results....
Oh, that's a fob-off if ever I heard one! What does that even mean? Of course they don't 'accommodate levo in their results'! The lab will have no idea what dose you're taking or when you had your last dose, and doctors have no idea how to interpret blood test results.
I very much doubt you need your dose reduced and doing so will probably result in you feeling bad. Just say no.
I have had the TgAB and the TPOab tests a few times over the last few years - mainly through private testing. See my results here: docs.google.com/spreadsheet...
And I will certainly say No to the GP - it's taken me a long time to have this not quite right semblance of normal - and stick to the 100.
If my thyroid is inflamed - what can I do about that? Is there anything?
Did you know that restless legs can often be caused by low levels of nutrients - mostly minerals but also vitamin D.
Depending on the low levels that people have the things that help their restless legs aren't necessarily the same for everyone. But the things that I've seen helping people (or that have helped me) are :
Vitamin D - optimal for most of us is around 100 - 150 nmol/L (units of measurement used in the UK and some European countries) or 40 - 60 ng/mL (units of measurement used in the USA.
Magnesium - there are lots of different kinds of magnesium supplements. In someone with functioning kidneys the body will excrete any excess via the urine. Anyone with non-functioning or poorly-functioning kidneys should avoid magnesium unless monitored by a doctor. Note that the blood tests for magnesium are not reliable and shouldn't be relied upon.
Iron - there are lots of iron supplements to choose from too. But it is essential to test iron and ferritin (iron stores) before supplementing. If levels of either iron and/or ferritin are high then supplementing should be avoided. The best test for iron is an iron panel. Medichecks does one of these which can be done with just a finger-prick sample of blood.
If iron / ferritin are very low and people can afford it then the whole process of raising levels can be done with a private iron infusion which speeds things up immensely, although some people find their raised levels don't last long.
Sodium - Low levels of sodium (i.e. salt) can cause restless legs and cramp. You could just try a level quarter teaspoon in water and drink it to see if it helps. Alternatively you could try a product like Dioralyte (it replenishes electrolytes in cases of diarrhoea, vomiting, and dehydration and is available without prescription).
Potassium - It is best to raise potassium by increasing intake of potassium-rich food, but supplements are available. And Dioralyte may help with this too. Potassium should never be taken in excess because it can cause heart rhythm problems.
...
The pills you take for restless legs (ropinerole) sound awful to me, to be honest. I wouldn't take them. I'd rather experiment with minerals that are essential for good health than take something that has lots of horrible sounding side effects.
When I have an episode of restless legs or cramp I will take a single dose of one of the above, wait five minutes then try one of the other suggestions, then just keep trying alternatives until my restless legs or cramp disappear.
I don't take any of these things (except magnesium citrate) every day, I only take them as necessary. I make sure I always have suitable supplements in stock and take them as necessary.
First step get vitamin D, folate, B12 and ferritin levels tested
Restless legs is strongly connected to low iron/ferritin and/or magnesium
What vitamin supplements are you currently taking
I would also suggest you retest TSH, Ft4 and Ft3 correctly
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
List of private testing options and money off codes
I am just committing to taking Vit D religiously, i do take magnesium often, starflower oil, and i have iron tablets to start taking. I eat a healthy diet, but i'm not gluten free. I have since come off Ropinirole but am taking pregabalin at lowest dose and will come off that too - but the water retention was there before i took those. It feels like its been a slow creep on to my body. I worry about it because my mum has lymphodema - and have seen what she's had to deal with in her life. Anyway - feedback welcome!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What should my next steps be?
Are these ok?
Recent GP visit - Thoughts please!
GP wants to discuss blood tests!
