Hi - those of you (myself inc) that self medicate how do you know you are doing OK?
Do you just see what your symptoms are?
Do you pay for private blood tests to see your levels?
Do you see a Endo but change/top it up - what they prescribe you?
Do you tell your GP you self medicate?
Cheers
I know I’m doing OK because I can do all the things I need and want to do and my weight is within the normal range for my height. I treat by symptoms and haven’t now had a blood test in nearly two years, so I will get a private test fairly soon. I think it’s about time. I started self-medicating three years ago when I realised my GP had no understanding of my thyroid issues and was going to make me ill again. I’d been ill long enough waiting for a diagnosis and wasn’t prepared to risk my health again. I have not told my GP I self-medicate, but then again, I haven’t seen him since I took my health into my own hands!
Yes I totally u derstand that. Glad your feeling well!
Hi, I'm glad you're doing ok.
I have lost faith in my GP,
I'm taking thyroxine and have found that GP is too happy to keep handing out meds.
I'm researching ways which I can help myself, do you have any advice?🌻
Most on this forum self-medicate because the doctors don't allow a variation of thyroid hormone replacements and are insistant about keeping the TSH in range when we may need it 1 or lower to feel well. All vitamins/minerals also have to be at an optimum
There is T3 which can be added to a reduced T4 (levothyroxine) and our Special Advisers have had a paper published which shows that many need T3 added to T4 to recover.
There is also the 'old fashioned method' introduced in various forms up until the late 60's (I believe) when levothyroxine and blood tests were introduced.
NDT contains T3. T4, T3, T2, and T1 - before NDT was introduced we just died a horrible death. It is made from pigs thyroid glands and many have recovered their health with this method. There are several manufacturers.
Pay for tests, notice how I feel, havn't told any doctor (don't think they would approve). Sometimes they comment on bloodwork but I know why the tests look the way they do, otherwise I change the dose.
My GP does know because they used to prescribe T3 and now dont. I have a yearly blood test now and have been symptom-free for a few years now.
If symptoms occurred I'd then request GP to test thyroid hormones and B12, Vit D, iron, ferritin and folate.
It isn't quite straightforward when trying to find the perfect dose but I had to adjust a few times up/down always taking note of my symptoms.
Symptoms and blood tests - same as GP would do, but I reckon I'm better at interpreting them than GP and have read more.
So how much does it roughly cost to get your bloods done?
Zuzka1,
Depends which tests you order. Have a look at Blue Horizon and Medichecks TSH, FT4 and FT3 or Blue Horizon Thyroid Plus 11 or Medichecks UltraVits. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.
My Gp is aware I self medicate and monitors my levels (tsh, ft3 and ft4) but I think I’m 1 of the lucky ones with a decent doctor.
He would prescribe if allowed x
Self medicate and get bloods done through Blue Horizon or Medichecks... Via Thyroid UK website. Depends who has best prices at the time 🙂 My GP knows and pretends to be interested but I think thats just cos I save the practice money 🙄
Ohhh ok so you don't go to a blood testing centre? You draw and send off?
Yes finger prick sample😀 Do blood first thing in morning and it goes in the post that day, results within 48 hours fir the tests I do. Under £100 and very simple and stress free fir me... I'm needle phobic otherwise known as a total woos where needles are concerned
Wow - i had no idea - Ok that makes me ALOT more comfortable if my endo and I decide to part ways....
Here's a link to the Thyroid Uk page on private testing 🙂 thyroiduk.org/tuk/testing/p...
Thank you - I am in France tho - I will email them and ask how I can do it -
I go by symptoms only. When on NDT, the TSH is likely to be suppressed, so really unimportant. I have noticed that I feel best when my FT4 levels are midrange or slightly higher, and my FT3 levels are in the upper third of range, but I only dose according to symptoms.
I am seeing a doctor prescribing NDT, but the two drugs available in Belgium (Armour and Erfa) are both expensive and problematic (Armour was reformulated a few years ago, and Erfa is said to have suffered the same fate) which is why I source my own NDT from Thailand. It works very well at a fraction of the cost of prescription NDT. I have not told my doctor.
You should see an Endocrinologist. Never self medicate. Thyroid controls our entire body.
SCJGL,
Self medication should be a last resort. Unfortunately, for some people it is the only option other than remaining ill if their GP won't refer them to an endocrinologist or the endocrinologist isn't knowledgeable.
Trust me.....if my Endo was actually helping me I would!
SCJGL well, you'll just have to report us all then won't you!!
PS do you have a thyroid condition?
At the end of the day, Endos will know far less than we do about most things, and its very likely an Endo will make decisions that endanger your health, or keep you long term disabled.
So maybe there is a risk that by self medicating we will endanger our health.
But this is no worse than allowing a doctor to endanger you. There's no such thing as a situation of zero risk 
I totally agree!
Good post SilverAvocado . My NHS Endo told me he wasn't concerned about my symptoms, well of course he didn't have to live with them. Just another diabetes specialist, with zero accountability naturally.
Zuzka1,
My GP knows I self medicate NDT after CCG stopped my T3 meds over two years ago. He is happy to do all blood tests as long as I see my private endo once a year.
I know I am doing ok as I feel well.
I had 14 endocrinology appointments over a four year period and came out without a diagnosis, although I have since found out that I was diagnosed and my GP was asked to treat me. However, nobody ever told me this. After nine years of increasing ill-health and increasing disability, I basically bullied a GP into giving me Levo. I managed to get two dose increases off him before he moved on and the next one started reducing my dose. I had a year of relatively good physical and mental health and I wasn’t going to let that go again. That’s when I started self treating.
I am still tuning my dose, and monitor my treatments with:
Regular blood tests. I have a thyroid panel about every 6 weeks, and vitamins every year. Medichecks or BlueHorizon, pin pricks done at home.
Temperature, pulse, and blood pressure morning and night.
Making accurate notes of symptoms before every dose change.
Symptoms are the most important thing. But it can be hard to know whether things have reall changed, so I've slowly learned how to make better notes. The most important thing is to write about both what i can do and what i can't.
I went from being in bed most of the day, unable to wash, dress, or prepare food for myself. I'm now able to take care of myself and do most anything i want in the house, and going out for walks trying to increase my steps.
Oh yes, should have mentioned that I told my Endo in the end, after asking her about NDT several times and her being ambivalent about it. I waited about 6 months until I knew i was going to see improvement.
She now mentions it in the letters she send my GP.
Disasterous appointment with endo...it's time to self-medicate
If you were me, would you forget the Levo and self medicate?
Should I self medicate?
Who is self-medicating?
