Hi all,I only recently found out that this group exists so please bare with me if I have repeated things that are in other posts.
I had a total thyroidectomy when I was 17 and for years after they tweaked my dosage of levro. I'm now on 100micrograms and have been for 12 years now. I have had low energy, weakness, mood swings, freezing all the time and weight gain 3st to be exact. I have my thyroid function reviewed once a year now and levels always seem to be 'fine'. I recently came across Dr Childs videos and asked my doctor for T3 to which the response was 'no, we can't prescribe that' before asking I looked it up and it said UK doctors have been advised not to prescribe it because it more expensive, is this the case?
In regards to weight gain if I want to lose weight I have to be in severe calorie deficit and exercising to the point I almost caused considerable damage to my kidneys, I'm tried all the time and sometimes can't even bring my arms up to tie my hair, my other Vits levels are ok. I'm at a loss really, I'm hoping someone could advise me on what to say to the doctors. Sorry if it sounds like I'm complaining, I really don't mean to, I just don't know how to approach the GP and not get fobbed off with your levels are fine.
Thank you in advance
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Kokojwo
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Complain all you want! We understand. We've all been there and know that the average, ignorant doctor gives us plenty of reasons to complain!
OK, so the first thing is not to just take your doctor's word for your levels being 'fine', that's just his opinion and I wonder how 'fine' he'd find them if they were his! What you need to do is ask at reception for a print-out of your results, for as far back as possible. It is your legal right to have one. You need to know exactly what was tested and exactly what the results and ranges were, and keep your own records noting doses and symptoms at every blood test. It will be invaluable in the future.
I'm afraid it is true about doctors being advised not to prescribe T3 due to cost. But that's not the only reason they don't prescribe it. It's also because they have no idea what it is, and hormones scare the wits out of them, anyway! But, on the NHS, GPs cannot prescribe T3, the intial prescription has to come from an NHS endo. And, very often they will refuse to see you on one pretext or another. It's is hard to get T3 prescribed on the NHS.
But, first of all, we need to see if you actually need it, or if you're just under-medicated on levo. And to do that, we need to see your blood test results. So, get the print-out and then post the results and ranges on here, and let's have a look.
First step is to get FULL thyroid and vitamin testing
Do you always get same brand levothyroxine at each prescription
What was reason for thyroidectomy
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
Testing options and includes money off codes for private testing
Thank you, I'm not due for full blood count until April but will have a look at the links below.When I book my next blood test I'll try to book it for around then.
Yes, have been on the same brand for the last 3 years now.
Had hyperthyroidism from around the age of 9 but doctors misdiagnosed as a common sore throat until I was around 11 years old. They medicated me but decided that I needed to have it removed because it was toxic. So had it removed at 17.
I checked the symptoms for hypothyroidism and I have the majority, just booked a doctors appointment.
Hopefully you'll not feel lost anymore and find yourself at ' home ' here - for all things thyroid.
We have all been fobbed off several times and why this forum exists as we are a patient to patient forum and support each other - knowledge is power - and you too can get back to better health and ' your you ' - with a little bit of work and knowledge - learnt through this forum.
I have Graves Disease but treated with RAI thyroid ablation back in 2005 which I deeply regret - but there you go :
Do you have online access to your medical records held at the surgery ?
if not, maybe register and just ask the surgery receptionist for the necessary forms - and then you can scroll back through all your results and find the blood tests and ranges when it suits you and not feel you are being nuisance at the surgery.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
T4 is a pro-hormone and pretty much inert and needs to be converted in the body into T3 which is the active hormone that runs the body with the thyroid responsible for full body synchronisation from your physical ability through to your mental, emotional, psychological and spiritual well being - your inner central hearing system and your metabolism.
Conversion of T4 into T3 can be compromised by low levels of ferritin, folate, B12 and vitamin D - so we need these core strength vitamins and minerals at optimal - and we can advise on this when we see some readings as just being in a NHS range somewhere is not optimal with some NHS ranges being too wide to even be sensible.
Some people can get by on T4 only :
Some people find that T4 seems to stop working as well as it once did and that by adding in a little T3 - likely a similar dose to what their thyroid once supported them with - they find themselves feeling better :
Others can't tolerate T4 and need to take T3 only - Liothyronine:
Whilst others find they feel better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets, referred to as grains.
All these treatment options were available from your doctor up until around 2000 if T4 monotherapy did not restore your health and well being -
sadly now your doctor has little autonomy and you will need a referral to n endocrinologist to be assessed - and even worse - it has become something of a post code lottery throughout the country - and in some areas financial constraint rather than medical need - is implemented.
First and foremost we do need to see a full thyroid blood panel to include a TSH, Free T3 and Free T4 + ferritin, folate, B12 and vitamin D with inflammation and thyroid antibodies automatically included in the ' thyroid bundle ' blood test of around 10/11 readings and ranges.
If you doctor can't help with running these blood tests you can go Private and this is what we all tend to end up arranging as our starting point to getting back to better health.
If you go into Thyroid UK - thyroiduk.org there is a page dedicated to private companies who run the blood tests - with Medichecks and Blue Horizon between them -offering a nurse home visit to draw your blood if this suits you best.
Arrange an early morning appointment at the beginning of the week as then you should have the results back before the weekend.
Stop any supplements around 7 days before the blood test as we need to see what your body is holding rather than what has just been ingested.
Fast overnight - just taking in water - and do not take your T4 for that day until after the blood draw - as again - we need to see what your body is working with and not what you have just taken which gives a ' false high ' reading and may you seen as having too much T4 and a dose decrease implemented.
Thank you for the response, very comprehensive and extremely helpful thank you. I will take on board what you've said/suggested. I'm in the process of trying to gain access to online medical records but also my blood results. I feel like this forum has already been so helpful in helping me to understand thyroid issues that have been ongoing.
Hi all, just a little update. I have requested my results dating as far back as possible. I know it will take a while to receive them but on a positive note my doctor has referred me to be seen by an endocrinologist because I have hypo symptoms but bloods come back fine. I would appreciate any advice in what I should be enquiring about and what I need to ask because for years I've allowed myself to be fobbed off and I don't want to waste this opportunity to finally feel some what normal again. Thank you for the support so far and thanks in advance.
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