I asked to see an Endocronogist: Hi, its been a... - Thyroid UK

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I asked to see an Endocronogist

Msharpe1963 profile image
10 Replies

Hi, its been a while since I used this site, I was having terrible side effects to the Tiva new formula, palpitations (really bad), anxiety, sleeplessness, buzzy head and didn't feel right at all, when I stopped taking them and told my chemist that I couldn't take them, they have made a note and now for 7 weeks I have been back on Activis and feeling so much better, apart for the fact I am still having occasional palpitations, but nothing like I was suffering on Teva.

I still felt fatigued so went back to the doctor and asked to see an endocrinologist which she agreed to do, within a week I was told endocrinology had asked for certain blood tests to be taken, this was done on Tuesday and by Wednesday morning I got a call saying I had to make an appointment with my doctor to discuss my bone profile blood test, does anyone know anything about this test, what are they testing for and should I be worried getting asked to make an appointment with my doctor? I still haven't seen the endocrinologist yet?

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Msharpe1963
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SlowDragon profile image
SlowDragonAdministrator

Teva Levothyroxine upsets many many people

healthunlocked.com/search/p...

Suggest you put in a yellow card and make sure its on your notes "no Teva brand "

yellowcard.mhra.gov.uk

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Low vitamin D is very common and is important for good bones. Magnesium too

Low calcium is often linked to low vitamin D. Calcium levels naturally rise as vitamin D improves with vitamin D supplements

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Vitamin C and bones

healthimpactnews.com/2018/d...

The importance of sunshine

outsideonline.com/2380751/s...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests

How much Levothyroxine are you currently taking?

Do you have recent blood test results and ranges you can add?

Msharpe1963 profile image
Msharpe1963 in reply toSlowDragon

Hi there, thank you for all that information, i have only been on 25mg of actavis levothyroxine for 13 years until the doctor tried playing around with it by making me take more which caused massive palpitations, flushing, sleepless nights, sore bones, aching muscles etc, and when i dropped back down, i went back to "normal". Then the new fomula teva brand made my heart race until i was about being sick, palpitations constantly, hot sweats etc, now my pharmasist says he has marked me as sticking to actavist, although all the symptoms have stopped, i still have occasional slight palpitations. I asked to see an endocrinologist and they ordered bloods from my doctor, they came back the next day apparently ok, apart from my thyroid being borderline, and my bone profile blood test needs to be discussed by my doctor on wednesday. I dont know what a bone profile test is or what they look for, and as for my regular bloods, i dont have the results at hand as my doctor doesnt let me know what they are sitting at

Do you have any idea what a bone profile blood test looks for?

SlowDragon profile image
SlowDragonAdministrator in reply toMsharpe1963

Teva brand upsets many people

Many hate it, a few love it

healthunlocked.com/search/p...

You are legally entitled to printed copies of your blood test results and ranges

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Bloods should be retested after 6-8 weeks on constant dose back on Activis

Low vitamins are very common when under treated

Obviously 25mcg is very small dose

Come back with new post once you get results and ranges

greygoose profile image
greygoose

I would imagine they want a bone test done because your TSH has tested very low - suppressed, even. And, they mistakenly believe that a suppressed TSH causes osteoporosis. It doesn't, of course, so don't worry about that. But, they might want to reduce your dose of levo.

Do you routinely ask for a print-out of your results? If not, you should do. They are your results and you need to know what they are, and the ranges, and exactly what was tested. We can help you understand them if you post them here. I don't know about the bone test itself, because I've never had one. But I don't suppose it's anything to worry about. :)

Msharpe1963 profile image
Msharpe1963 in reply togreygoose

Hi there, thank you for your reply. The bone profile test was part of the bloods the endocronologist ordered as far as i know, i was just told everything came back fine apart from this test, and i was also told my thyroid was borderline. I have asked for my readings in the past but was told i didnt need them. Ive only ever been on 25mg for thirteen years until they started playing around with my levothyroxine by upping it, which made me ill. I worry about the bone profile test because i have never heard of it before. Any help knowing what this is would be much appreciated.

greygoose profile image
greygoose in reply toMsharpe1963

Well, then, for x number of years, your doctor has been breaking the law - if you're in the UK. The law says that they are YOUR results, and you have a legal right to a print-out, and your doctor cannot refuse. So, ask the receptionist to print you out a copy. If she refuses, remind her the law says you can have one, and there are ways to force the practice to hand them over. Don't be fobbed off by 'you don't need to know', because you absolutely do need to know.

25 mcg is not even a starter dose. And, it doesn't matter if your thyroid was 'borderline', 25 mcg is most unlikely to help.

I'm afraid I can't help you with the bone profile test because I've never had one. Maybe SeasideSusie can help? :)

Msharpe1963 profile image
Msharpe1963 in reply togreygoose

thank you for your info, i will certainly ask on wednesday when i go for my chat with the doctor. I know 25mcg isnt a lot, but its all ive been on for 13 years, and have never felt i needed them since i started the menopause at exactly the same time, i will see what happens at the appointment. Thank you.

greygoose profile image
greygoose in reply toMsharpe1963

You're welcome. :)

SeasideSusie profile image
SeasideSusieRemembering in reply toMsharpe1963

Sorry, I don't know anything about bone profile tests, not had a problem myself so I haven't looked into that.

in reply toMsharpe1963

PLEASE get copies so you can see the exact numbers. 'Borderline' means nothing'. Just like 'good', 'within normal limits', and 'fine' are meaningless.

Listen to greygoose. They are your tests. You are entitled to printed copies and all the information they contain. Don't let them dismiss you. They are not giving you adequate care.

Many of us here have had to spend time fighting to get effective treatment. It sounds like you have skirmishes to take on. You are the customer (patient) and you have the right to feel well.

Also I have never heard the term 'bone profile' used. Could they mean Vit D,Tsh, and other results that play a part in bone health? It could be that was the term coined by a front desk-type person who didn't understand what was being asked for. Please ask them to clarify the specific tests they want to discuss. And if it were me I would ask why I can't discuss them with the Endo during my visit.. 😊

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