I’ve been suffering for as long as I can remember (20+ years). I’m 45 now. Every happy memory/event I have is marred by the fact that I’ve always felt unwell… all over body pain, headaches, neck and shoulder pain, anxiety and food intolerances that have me doubled over in pain and feeling like I’m going to pass out in agony. I often get to the point where I wonder how much more of this I can take. I’ve tried many things that haven’t worked and I’m wondering if my thyroid/medication has something to do with it. I was diagnosed with an under active thyroid at 16 and have been on thyroxine ever since. I’m now on 150mg daily. I would like to see a private specialist as never get anywhere with the NHS but I’m not sure whether to see a naturopath or a Dr who can prescribe me an alternative to thyroxine such as Armour. I know recommending specific specialists is not allowed but any advice would be much appreciated. Thank you.
Naturopath or private Dr - desperate, please help! - Thyroid UK
Naturopath or private Dr - desperate, please help!
Welcome to the forum
We would always recommend getting FULL thyroid and vitamin testing done BEFORE booking any consultation
Do you always get same brand levothyroxine at each prescription
If yes, which brand
What vitamin supplements are you currently taking, if any
Presumably you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?
Which foods cause issues
What are your most recent test results from GP
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water 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
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 or NDT
...NHS and Private
tukadmin@thyroiduk.org
Please add most recent results or come back with new post once you get FULL results
Have you had coeliac blood test done
Are you gluten free or dairy free
If dairy free, you will need lactose free levothyroxine
Welcome to our forum and you will find many members are helpful and the majority of us have been able to restore our health towards 'normal' due to members being helpful and many seem to be more knowledgeable than GPs or some endocrinologists.
I shall give you a link to our 'mother' forum and Thyroiduk.org.uk work behind the scenes in order to try to change the attitudes of the professionals towards treating hypothyroid patients with an optimum dose of hormones that relief our clinical syptoms and we feel well again.
I have tried alternatives to levothyroxine and eventually found that T3 (liothyronine) alone resolved my clinical symptoms.
thyroiduk.org/if-you-are-hy...
I and many others on the forum can understand your statement "is marred by the fact that I’ve always felt unwell… all over body pain, headaches, neck and shoulder pain, anxiety and food intolerances that have me doubled over in pain and feeling like I’m going to pass out in agony. "
'Naturopath or private Dr - '? From personal experience, one advantage of a private doctor is that you will be able to get private prescriptions. In particular if you want NDT such as Armour or Erfa you will be able to get them in the UK from reliable pharmacies on the Thyroid UK list. When I went to a naturopath recently the only NDT he was able to suggest came from abroad and took a long time to order and arrive.
Have you ever looked into Vitamin B12 deficiency? Might be worth having a swatch at this site.
In answer to your question, I think it's probably too late for a naturopath to have a significant effect after your thyroid has relied on levo for ~30 years. Though he/she may help ease some symptoms now, the best chance would've probably been when you were subclinical.
Hello Ralphymissy and welcome to the forum ;
You can do no better than starting off on this forum and until we have some more detailed information you could waste a lot of money and be no further forward.
We all start off on here having to organise a full thyroid blood panel to include TSH, T3, T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D.
Once with the results and ranges start a new post with this information nd you will be talked through your next bet step back to better health.
If you go on the Thyroid UK website, who are the charity who support this forum, you will find a section on private companies who run the necessary blood tests with some even arranging for a nurse to visit you at home to draw your blood.
It's that simple and forum members on here will explain the results and advise on your next best step forward.
This is where many of us start off, and why this forum is so important to us.
You too can become your own best advocate, and through reading and understanding we have managed to claim back our health and now come back on to help support and share our knowledge with other people who are just " starting off " getting their health back on track.
You need as early as possible morning appointment for the blood draw :
Do not take your T4 - Levothyroxine medication before the test - take it afterwards - T4 is a storage hormone - you won't " miss it " :
If taking any supplements leave them off for around a week so we can get a measure of what vitamins and minerals your body is holding onto :
Of course you can ask your doctor for this blood test, but you maybe refused, I was, it caused a rift in an already fragile relationship - but it's your choice, obviously.
Thyroid UK also hold a list of recommended thyroid specialists both NHS and private but you can do much of the ground work yourself and it may not even be necessary to pay to get the right answers as there is a wealth of knowledge and experience from forum members.
First thing it would be good if you got your levels tested and post results here for comment. Then you can decide if you need to find a T3 friendly nhs or private Endo or if you want to self source meds. I use Medichecks but there’s lots of others - get T3 t4 and tsh tested first thing in am before taking Levo. Get vitamins done too if you can as it helps the complete picture.
Welcome Home!!!! If you have been struggling on alone for over 2 decades then I think you will feel much better after being here for a while. We all know what you are going through, because if we hadn't had problems with hypo/hyper thyroid we wouldn't be here either.
Have you ever been referred to an Endocrinologist on the NHS?
You shouldn't be having to go through this on your own and from such a young age too.
I was diagnosed hypo in 1999 and only found relief for my years of illness on Levothyroxine only this year. I rebelled, fell out with my GP and Health Board spectacularly only last year, but I am so glad that I did that because I have a life now - I had no life at all before then.
I went my own way because of TUK and this Forum which educated me into how to treat a myself/hypothyroid patient and Levothyroxine is not always the right choice for such patients and on here, most of us have suffered with Levo only therapy.
Don't immediately go outside the NHS, if you can find an NHS Endo who understands how the thyroid works - as opposed to one trained only in Diabetes treatment - then go there, they (NHS) owe you that if you have had no Endo at all. As I did by the way. I was told that I had only Levo to use and was never given any chance of seeing an Endo either.
NHS GP's are not trained in much of the treatment necessary for those of us who can't get along with Levothyroxine, believe it or not.
They can't even test blood for the only results that you need to test to work out how well we/you are on Levo either. They generally try to work out how ill we are using only a Pituitary hormone only! I know, unbelievable isn't it???
But you are in the right place now, never fear again, because you will soon see that you are in the right place. Save your cash for supplements and Private blood tests which will give you everything you need to know to see why you are feeling so ill and how to treat yourself.
PM me if you ever need to support, or anything else, if I might be able to help, try me.
Thanks so much everyone for your advice and support. Lots to take in and think about. I’m currently asking my GP for as many of these tests as possible, as a starting point. Thanks again x
I’ve just spoken to my GP who is going to request the tests but warned me that if my TSH levels are ok the lab won’t go on to test T3 or T4 or antibodies, but I will do the private test if that’s the case. Fingers crossed!
Remember only test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Ideally always get same brand levothyroxine at each prescription. Bloods should be retested 6-8 weeks after any brand change in levothyroxine
If taking any vitamin supplements that contain biotin (eg vitamin B complex) stop these a week before ALL Blood Tests as biotin can falsely affect test results
Come back with new post once you get results and ranges
On levothyroxine we need OPTIMAL vitamin levels…..not just within range
This is on the form he’s sent me… is this enough? If not, I’ll just get the private ones done.
Hi Ralphmissy19 👋😊
I’d just get yourself a full test as advised above - privately. NHS route is a waste of time Certainly do not expect them to be able to interpret the results 😂. Come back to these guys they know their stuff - saved my bacon, that’s for sure (background on profile)
And just to reiterate - I expect it has be mentioned above but just in case….
Leave off any supplements with biotin in a week before. Biotin has an effect on the testing.
Do a private finger prick blood test on a Monday or Tuesday so sample gets to lab in good time.
Take levo after test.
Do test early in morning.
Eat nothing and drink ONLY water.
Then take levo and leave the usual hour or two before you drink anything other than water or eat.
You may or may not know all or some of all the information provided above by everyone (and my two penneth) but some people are never told anything by their GPs so we air on the side of caution.
Your on the road to taking charge of your own well-being- have a good old read around others stories, posts and all the useful info provided- little and often. Get a really good handle on your own health and then you will have that moment when you realise you may still have much to learn, but are already more versed than most GPs 😱
😊👍
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