I have an Endocrine appointment next week ,trying to make the most of it ! I wanted to dig deeper with my thyroids ,I take levoththyroxine I know it's a cheaper option ,is there anything I should be asking ? I see people elsewhere taking T3 / liothyronine what's the difference, is it better ? Find this T3 ,T4 soo confusing!
Also oesterporosis diagnosis in left knee which I haven't been able to walk on past 2 days ..could it be the levo or Hydrocortisone for Adissons disease ?
I can't help feel a bit fobbed off too 😕
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Hungerfordboyle
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Have you done a full thyroid blood test ahead of your appointment? Can you share the results with us, TSH, fT3 and fT4 including ranges also any other vit and min results you might have... the more we know about your history the more we can help so filling in your Bio on your profile page would be helpful
Yes, it is all very confusing to begin with. We've all been there and had to try and sort it out without any help from doctors - who don't know much about it themselves!
For a start, we only have one thyroid - I imagine you know where it is. And the thyroid basically makes two hormones - T4 and T3.
T4 is basically a storage hormone which doesn't do much until it is converted into the active hormone, T3.
The physical difference between them is that one molecule of T4 contains 4 atoms of iodine - hence the name. And 'conversion' means removing one atom of iodine to make T3. Which the body is supposed to do automatically, but doesn't always do very well, which is why some people need to take T3 (liothyroinine) as well as T4 (levothyroxine).
That all sounds very simple (although it is quite a complicated process when you dig deep down) but the problem arises because doctors are not taught what T3 is or what it does or why people need it. Basic training on thyroid in med schools is very poor. They are taught that they only need to test the TSH 'because that tells them all they need to know', and if the TSH is in range, there's no problem; and all anybody needs is levo to be well; and that T3 is 'dangerous'/irrelevant. None of which is true. Quite the opposite, in fact.
So, if we need T3 - and we tend to know when we need it, because we've done more research than most doctors - we have to prove to an endo why we need it. And the only way to do that is to get our FT4 and FT3 tested at the same time and compare them. And the NHS refuses to even test the FT3 most of the time, so we usually have to get private testing.
How were your osteoporosis and Addison's diagnosed?
Osteoporosis is often due to low nutrient levels: vit D, vit B12, folate and ferritin. And these are often low in hypos due to low T3, making digesting food and absorbing nutrients difficult. Have yours been tested? If not, they do need to be as a matter of urgence.
And hypos often have low cortisol due to the fact that when the thyroid starts to fail, the adrenals tend to take up the slack. But they cannot do so forever so if you are hypo for a long time before diagnosis and/or getting optimal treatment, the adrenals can suffer from fatigue - another thing that doctors deny is possible. Cortisol levels can rise again when/if the hypo is optimally treated.
We all get fobbed off from time to time. This is usually due to the lack of medical knowledge/training about thyroid. They cover up their ignorance by blaming it all on the patient, or making the patient feel foolish and suggesting it's 'all in their heads'. Been there, got the same response. Which is why we have to learn as much as we can about our own disease - well done, you, for taking the big step to learn more. And we also have to gain self-confidence to stand up to those that think they know it all but really know nothing. Knowledge is power and breeds self-confidence. Although being hypo can sap it completely. l
So, anything you want to know, any questions you have, ask them here - 9.5 times out of 10 there will be someone here that knows. The Hive Mind is far more knowledgeable than any one individual doctor can ever be! We've got your back!
Ideally ALWAYS get FULL thyroid and vitamin testing BEFORE consultation
How much levothyroxine are you taking
How long at this dose
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you taking
Is your hypothyroidism autoimmune
Are you on Gluten Free and/or dairy free diet
You have Addison’s as well?
This makes management more complex
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
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