hi guys I’m going to see an endo for the very first time in a couple of weeks. I have had an under active thyroid for over 30 years I’m wondering what questions I should ask and what tests I should really ask for. I’ve never had my T3 checked so that will be one I will be asking for. I’ve been diagnosed with chronic kidney desease and high cholesterol and been told to take statins which I have refused as I know both are linked to the thyroid. I’m a fit and healthy 62 year old lady I work out and lift weights I’m not particularly overweight just hold a little fat around my middle which I really can’t seem to get rid of I’m 5”7 and weigh 10st 5llb. Any help would be gratefully received.
many thanks
net no
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Netno
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My advice would be the same as your last post (a year ago) Netno…. I would get FT3 tested (alongside FT4 and TSH), plus folate, ferritin, B12 and vit D (the key thyroid vitamins) before seeing an endocrinologist. This means that you will have all key tests in place ready to discuss with the endocrinologist. Many here (myself included) test privately for these.
It is a bit of a lottery unfortunately when it comes to endos…. Some are more knowledgeable with Diabetes than Thyroid conditions.
I would write down all your questions and take to the appointment (as it’s easy to forget) and take someone with you for moral support.
Shows you were on far too low a dose on 100mcg and 75mcg alternate days
Presumably you had dose Levo increased after this to 100mcg daily
Bloods should be retested again in another 6-8 weeks time
On levothyroxine TSH should ALWAYS be below 2
Many people find TSH will be around or below 1
Exactly what vitamin supplements are you taking
When were vitamin D, folate, ferritin and B12 last tested
is your hypothyroidism autoimmune?
Definitely get FULL thyroid and vitamin testing done BEFORE consultation
You’re likely to need to do this privately
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
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Well, apart from the good advice above, I know it sounds cynical but don’t go expecting great things and you won’t be disappointed. I had Graves’ disease which is hyperactive thyroid with antibodies and we hyperactive people tend to get taken very seriously (that’s only my opinion though) my treatment took a year and I found all but one of my endo appointments to be very flat / disappointing. .
Couldn't agree more with you about statins.
So go with low expectations and I hope you are very pleasantly surprised. I found it helpful to write down any questions and I kept notes on how I felt with each level of Levo I was taking - I was taking 40mcg carbimazole and ever increasing amounts of Levo, and I found that very helpful.
Keep any notes brief - just bullet points just to remind yourself of what you want to say otherwise you will lose your doctors attention and good idea if you can take someone in with you for back up and to remember anything you forget.
If your cholesterol or your age is high enough for doctors to recommend statins to you, please make sure that you print out the section on this link entitled "People at an increased risk of side effects" and take it with you :
Statins should be taken with caution if you're at an increased risk of developing a rare side effect called myopathy, which is where the tissues of your muscles become damaged and painful. Severe myopathy (rhabdomyolysis) can lead to kidney damage.
Things that can increase this risk include:
being over 70 years old
having a history of liver disease
regularly drinking large quantities of alcohol
having a history of muscle-related side effects when taking a statin or fibrate (another type of medicine for high cholesterol)
having a family history of myopathy or rhabdomyolysis
If one or more of these apply to you, you may need to be frequently monitored to check for complications. A lower dose of statin may also be recommended.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Another good link in connection with statins is this one :
Title : Is the use of cholesterol in mortality risk algorithms in clinical guidelines valid? Ten years prospective data from the Norwegian HUNT 2 study
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