Seeing endo unexpectedly and have private blood test on the way!!!

[Maztee]

I saw my gp (see prev post if interested) last week but got nowhere with T3, just the usual comment that T4 is too high. But because I pointed out endo was going to see me in a year and it was now 18m and parathyroid blood test hadn't been done properly last time (I have high calcium) I asked her to write to endo (Southmead, Bristol) to see about getting it done properly and I've just had a call to arrange an appointment for next Tuesday. I also have a private blood test on the way! I have stopped biotin till after the tests.I need to ask the endo to do a T3 test so if I get it done should I wait and use the private test in a few months instead?

Obviously if she won't do it I'll do the private test and I'll arrange to see a private endo from the Thyroid UK list as there is one nearby.

So I need to know if I can tell from my pre-2018 blood tests (and the new one if I get it) where my T3 and T4 should be in relation to each other and TSH? Is there a chart of some type to show this?

I noticed in replies to others that TSH is low if you take T3 but as they're blaming low TSH for my osteopenia would this not still be the case? I don't know how to counteract their statements.

Feeling anxious already as I find appointments difficult 🥴

[SlowDragon Administrator]

See what endo tests then do your own test if they haven’t tested everything

Essential to test vitamin D, folate, B12 and ferritin too

Any test should be early morning, ideally before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

[Maztee in reply to SlowDragon]

Hi. My appointments at 10 so blood test should be within an hour. I can't take Teva so I usually get Mercury or Accord and Wockhart for the 25mcg combo. That's been a battle!

Also will get parathyroid hormone checked accurately hopefully and scans etc.

I spent ages checking out my diary for symptoms and test results. The symptoms I have are exhaustion, muscule, joint and bone aches, muscle shakiness, just what I've had for years. I was worse on less thyroxine - like a zombie - but it's difficult to know now. I need to feel well 😟

[waveylines]

There is NO solid body of evidence to prove that a suppressed TSH causes osteoporosis! This is a nonsense they peddle. Ask the Endo to produce it if they try to peddle that line. My endocrinologist who specialised in osteoporosis told me this. So long as your thyroid hormones remain in range you will be fine he told me. A suppressed TSH doesn't matter its the actual thyroid levels that count. Alleluya for the voice of reason!

[Maztee in reply to waveylines]

Thanks wavelines. I'm going to mention that! But look at what is being said (I'm sure you have)!btf-thyroid.org/thyroid-dis...

Doctors just need to quote this and other such statements back and you've lost the argument!

[waveylines in reply to Maztee]

I've looked at your link. It refer to high level of actual thyroid hormones causing the overturn of bone to be faster that MAY lead to Osteoporosis. It talks that there is some evidence that MAY mean low TSH is an indicator of this too. That is not a conculsive body of evidence!! There is no specific body of research to support their statement listed. I'd take it with a big fat pinch of salt. So long as you keep your thyroid hormones in range and have no symptoms signs of over treatment, osteoporosis specifically from thyroid treatment is very unlikely.It's a scare monger tactic. One that is often quoted inaccurately. By the way bone turn over is not the same as Osteoporosis in any case.

Sadly they rarely mention the consequence of no or under treatment of hypothyroidism such as heart disease, raise cholesterol and blood pressure amongst others..... which their current protocol of testing TSH only is known to lead to under treatment.

[serenfach]

The only way round their argument is to say you will take the risk. You want to feel well now, and you know your body better than they do. If they start again on the risks, just state "I will take that risk". Who are they to say what you do with your own body?

I hope it goes well, you get some T3 and go from strength to strength.

[Maztee in reply to serenfach]

I said if there's a risk I'll have a dexa scan and see what shows up. Unfortunately osteopenia which I didn't have 10 years ago... so I need something from the endo. Either T3 or a hyperparathyroid diagnosis as calcium is high, vit D was very low but now supplemented, and PTH seems to be highish in range but not overrange but not tested accurately so I need to get that sorted. I feel like I'm on a constant merry go round...or a protagonist in a Kafka book 😱

[waveylines in reply to Maztee]

It was low vit D that led to my Osteopenia..... Which once corrected to an optimum level resolved. Have a look at the Websites Vitamin D Council or Grassroots who have excellent information & guidance.

[Hidden in reply to waveylines]

My osteoporosis is genetic. Thanks Mum 😉. Through 3 generations of females on my mothers side.

[Hidden]

A brief reply to any assertion that low/suppressed TSH causes osteopenia or osteoporosis.

My TSH is suppressed as I take T3. However, I was diagnosed with Osteoporosis before I had any thyroid issues at all

To the best of my knowledge, the only contraindication to T3 is AF or Hyperthyroidism

A lot of claptrap is talked on this subject. Most if it relates to unfounded beliefs that T3 will harm us. In reality, all that it will harm is the Practice Budget.

Pft

[McPammy]

I make sure my T4 and T3 levels are in range along with my TSH. I get my bloods taken after I’ve had my medications levo and T3 I don’t leave it out before the blood test. It’s the only way to 100% know if your levels are in range. As if you don’t take your medication before a blood draw you’ll never know if it spikes over range. The TSH usually suppresses when your levels T4 or T3 or both go over range. I like to know it’s all in range. I’ve had tests without meds too to see how low it goes. It’s just self assuring to know you’re always in range. Most importantly though it’s symptoms. I’m symptom free as long as I keep in range and a continuous supply of my thyroid medicines T4 and T3 and the brands I prefer. Another important factor is that my private and NHS endocrinologists cannot question anything about taking T3 liothyronine they prescribe. My last appointments follow up letters to my GP was they are extremely pleased about my success story. I try to emulate a healthy persons thyroid levels. That’s always been my aim and has worked so far.