I think I’ve asked before that I don’t understand some of the queries here in that I’ve not been informed by GP how or why thyroxine is measured.
I’ve just had blood tests then given levo to take. Last year I was out on statins also and I lost 2stone in about 6 weeks, only half stone was intentional.
I then had tests, found gallstones but surgeons don’t want to touch as might cause greater problems.
I was then advised from being underactive I was not overactive.
GP etc discussed that as I’d been taken 100 mg for many years weight loss wasn’t due to a too high dose of Levo but he was eventually persuaded to reduce 100 to 75.
I’m now putting on weight and lots of my underactive symptoms are returning. I still have some 100 mg so do I just take or, I know, try and talk to my GP again.
I don’t understand here how contributor know what they are talking about and who they are gaining their info from?
I just feel lost and ill-informed. I research but confused as to why information from GP’s are not flowing and I’ve only seen a consultant pp thyroid once about 15 yrs ago which wasn’t informative .
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Tina51
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I don’t understand here how contributor know what they are talking about and who they are gaining their info from?
For the most part I'm afraid they don't know what they're talking about, which is why they can't give you any information. You give information you don't have, and you can't explain what you don't understand yourself.
If you mean where they get their info from about you, then it's blood tests - although they don't understand them, either. Or, they 'consult' an endo, who is supposed to be a specialist, but isn't. Or, they rely entirely on the little bit of info they got in med school, which isn't very much. The rest they tend to make up as they go along.
Thyroxine is the thyroid hormone T4 - that is what you're taking, levo-thyroxine. They don't seem to know why they measure it themselves, because they rarely take any notice of it, they only look at the TSH - Thyroid Stimulating Hormone, a pituitary hormone. When a thyroid is working correctly, the TSH tells them when to make more and when to make less. But, when you're hypo, the TSH level can be confusing and inaccurate at best. However, when they were in med school, doctors were taught, by some misguided soul, that the TSH 'told them all they need to know'. No, it tells the thyroid all it needs to know, but the thyroid isn't working anymore, so the feed-back link - as it's called - doesn't work well and tells them next to nothing. So, that's why so many hypos stay unwell.
Do you always get print-outs of you blood test results? If not, you really should - it's your legal right to have one in the UK. You need to know exactly what is being tested, exactly what the results were, and learn to interpret them - we can help you with that. Your doctor would prefer you didn't know all that, because then you'd know more than him, so don't ask him. Ask at reception.
Last year I was out on statins also
So, I imagine your cholesterol was high? If so, then your Free T3 was more than likely too low. But, doctors would prefer you take statins because they prefer pushing drugs than hormones. They are scared rigid of hormones, which are pretty much harmless, but think dangerous drugs are OK.
I then had tests, found gallstones
Most hypos get gallstones, and most hypos have their gallbladder out. I can't imagine why surgeons thought that would make things worse. I've had mine out. It was a piece of cake. I've never had occasion to regret it.
I was then advised from being underactive I was not overactive.
Sounds like you have Autoimmune Thyroiditis - aka Hashi's. And that's one reason you need to see your blood test results, to see if your antibodies have been tested, because high antibodies indicates Hashi's.
he was eventually persuaded to reduce 100 to 75.
Who persuaded him? And why? Those are questions you have to ask him.
I’m now putting on weight and lots of my underactive symptoms are returning.
Of course they would. If you reduce levo, which is T4, the T3 will also reduce. And, as T3 is needed by every single cell in your body, if there's not enough to go round, it will cause symptoms, like weight-gain.
I still have some 100 mg so do I just take or, I know, try and talk to my GP again.
That's fraught with hazard because how long would your 'some 100 mcg' last? And what will you do when it runs out? You most certainly should talk to your GP, but first of all you need to know what you're talking about. And the first step towards that is getting hold of your blood test results for as far back as possible.
When you get your results, post them and the ranges (in brackets after the results) here and we'll explain them to you and answer any questions you have so that you can go back to your GP and talk informatively about increasing your dose back to where it was. In the meantime, don't hesitate to ask more questions, there will always be someone here that will know. And if they don't know, they will find out! Unlike doctors.
If it’s a single tablet it will be Teva brand and Teva is only brand that makes 75mcg
Teva upsets many people as it contains mannitol instead of lactose
First step is to get FULL thyroid and vitamin testing see exactly what’s going on BEFORE you change dose or brand of levothyroxine
GP might test TSH and Ft4……unlikely to test Ft3 …..but ask
Also request vitamin levels tested - vitamin D, folate, ferritin and B12
you also need thyroid antibodies tested at least once to see if the cause of your hypothyroidism is autoimmune
Do you know if GP tested thyroid antibodies when you were originally diagnosed
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that 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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hi thank you for all the support. I’ve read & reread the links and comments.
I called GP today and gave blood test this afternoon. Didn’t sleep at all last night worrying but GP has recommended a fuller blood test will be done to ensure nothing is being missed. Knowledge is power but I really didn’t need it today except to confirm lots of recurred symptoms. Thank you all much appreciated
thyroid test should always be early morning, ideally before 9am, only drink water between waking up and test and last dose levothyroxine 24 hours before test
This is patient to patient tip……Not discussed with GP (who will frequently deny it’s relevant)
Though NHS guidelines do state…..test early morning BEFORE taking your morning dose levothyroxine
August results as requested, trying to get GP appointment but none for a month and every morning day appts are taken before I can get through …… NB had 4 tests made but as may be interlinked sent all results . I’m at a loss…
just tagging SlowDragon for you so she will be notified of your replies with the results ... ( you replied 'to yourself ' so she won't have known you posted them . last week .. hence no replies .
if you had replied using the box directly under one of her comments , she would have got an 'alert'
although tested in afternoon I had not eaten since evening before. I don’t weigh myself. I’m 5’6.5”. I was told by GP thyroid was perfect so why isn’t it. I don’t understand.
But why aren’t the doctors picking this up and also telling me everything is okay then taking more bloods to check that they aren’t missing anything? When I asked to be referred etc they said that intimated tgey are not doing their jobs. I’m lost. Shall I just show them your concerns?
But why aren’t the doctors picking this up and also telling me everything is okay
current understanding and treatment of thyroid disease by medics is often poor
There’s often poor understanding by medics as to how fine tuned some people need their replacement thyroid hormones
This is by far the busiest forum on Healthunlocked with almost 133,000 members, vast majority are in U.K.
Important to maintain OPTIMAL Vitamin levels for levothyroxine to work well. Test at least annually
Lower vitamin levels more common as we get older and more common if hypothyroid and not on correct dose levothyroxine
Many thyroid patients find they need to supplement vitamin D, magnesium and vitamin B complex continuously……but ALWAYS test before starting any supplements
I think that you should go back to your GP and ask to be referred to the endocrinologist at your hospital responsible for thyroid. It sound like you might be at that stage with Hashimotos (an autoimmune thyroid condition) where you can fluctuate between hypo and hyper. You really need to ask for a print out of your blood results, then you can post them on here and get more advice. Thyroid can cause all sorts of symptoms including gallbladder and heart etc. The amount of Levi thyroxine can depend on all sort of things and there is a great reluctance in the UK to prescribe T4 with T3. At present I am on 230 mcg of Thyroxine and still suffer symptoms
had the tests, got the results, discussed with physician, no Hashimotos, thyroid ok, no endocrinologist as they will just tell you GP is doing their job.
Now being tested for fibromyalgia & polimyalgia Didn’t get any feedback from yourselves after I posted latest results so I’ll just plod on 😌🙁
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