Hi everyone. I am a new member. I was diagnosed with fibromyalgia over years ago and it has turned my life upside down. I have to give up a very good job and resort to working from home to try and manage my symptoms, at a much reduced income. I am struggling to look after my two school age children, keep house, and be any sort of wife to my poor husband.
I am on eight different types of tablets daily - antidepressants, strong painkillers, muscle relaxants etc to manage my symptoms. I suffer - all over body pain, chronic fatigue, irritable bowels, skin problems, extreme sensitity to cold especially in my hands and feet, depression, lethargy, melaise, ridges in my nails. Do these symptoms sound familiar to you? Oh, and my mother suffered from an under active thyroid....
I have had my thyroid tested several times over the last few years by GPs only to be told my results were 'fine'. Just recently, I have come across 'Stop the thyroid madness' and various articles. This has got me thinking and so I pulled out a letter from my last visit to a consultant rheumatologist with my last basic NHS thyroid results on it from Feb 2015. Here they are:
Free thyroxine 9.9 (normal range 10-22) - I assume this is T4
TSH 2.1 (normal range 0.1-4)
Now am I right in my interpretation that my free thyroxine is BELOW range at 9.9???!!!! Well, the clinicical bichemist's comment in the letter is 'there is no overt thyroid disease'.
I have now decided to investigate this further at my own expense and have sent for a home finger prick advanced thyroid testing kit from Blue Horizon, which tests T3 and antibodies etc. It should come tomorrow, hopefully.
Some questions for people more knowledgeable that me as a newbie....
1) what do you make of my NHS results from Feb 2015? Are they normal?
2) what is the best time to do my at home test to ensure the best results?
3) what do I do with my home test results if they do indeed show I am hypothyroid because they have delved deeper than the NHS test?
4) will an NHS GP take these private results at face value and treat me accordingly?
Thank you for any advice and help you can provide.
I hope I get some replies.
Xxx
Written by
Sugarbuttie
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I, and most members will think you are hypothyroid. This is a link and you will see that you are also. It is so unfortunate that labs and doctors believe that only a TSH is to be taken as a diagnosis and don't know what a clinical symptoms is if it slapped them on the face. We have to read and educate ourselves in order to recover our health as many have been ill for years without sufficient hormone levels and can also develop other problems.
Many of us have been on the 'what is it' roundabout and eventually come to a thyroid gland dysfunction, whether by medical profession or amateurs. Some links for you. As these are archived now that Dr Lowe has died some links within may not work:
Many thanks indeed for your reply. The link between fibromyalgia and hypothyroidism is one I have suspected for a while. I cannot accept that at 42 all I want to do is lie in bed??!!! There has got to be a reason for the way I feel.
I am so glad I found this site.
Are you able to answer questions 3 and 4 on my lists about what to do with the results if they come out showing hypo? I have little faith in the GP prescribing the natural stuff from what I read so far. Just wondering what my own personal next steps should be.
Has anyone ever had their GP 'done' for misdiagnosis, as a matter of interest? If it turns out that an under active thyroid has been responsible for my illness over the last four years and NOT fibromyalgia, can you imagine how angry I am going to be at the NHS? I have lost my career over it as I have not been able to work due to uncontrolled symptoms as fibro has no cure. I know I am jumping the gun here but it is all I can think about.
Anger is one of our strongest emotions, particularly when we, finally, discover what has made us unwell and, again, when told that levothyroxine cannot be responsible when we are not getting further forward on it. I must say that many, once medicated on levo do fine and will not be on this site looking for answers so,hopefully, you will be one of those.
I don't think that any GP will be/has been 'done' because the guidelines state that we cannot possibly be hypothyroid if our TSH is 'in range'.
Before the blood tests and TSH were introduced as 'perfect' diagnosis we were treated due to our clinical symptoms and prescribed Natural Dessicated Thyroid Hormones on a trial basis. Levothyroxine was introduced along with the blood tests as being 'perfect' replacement in place of NDT. About ten years later 'new' diseases were named, fibro, CFS, and ME. Doctors who now prescribe NDT or according to symptoms only are usually hauled before the GMC. May lose their jobs.
Re Q 3 and 4. Your GP may take note of them (some don't ) - the labs are reputable if you use one of the Thyroiduk.org ones. Usually we get a small discount and the main Thyroiduk.org.uk site gets a nominal sum too. Link:
Blue Horizon do pin-prick home tests and am not sure if the others do so.
Do you wonder why some members feel forced to self-medicate?
If you click on my name you will see my Profile and also anyone else's name to see their Profiles (background history). This is an excerpt from Dr Lowe:
November 5, 2000
Question: My doctor and I are hoping that you will soon solve the problem of fibromyalgia. How much longer do you think it will take?
Dr. Lowe: The time has passed. We’ve already solved the problem of fibromyalgia. In addition, we have a treatment, "metabolic rehabilitation", that relieves some 75% to 85% of patients from their fibromyalgia symptoms—fully and permanently. I explain the solution and the treatment succinctly on various pages of drlowe.com, and I explain in depth in The Metabolic Treatment of Fibromyalgia. In a single statement, fibromyalgia is the symptoms and signs of too little thyroid hormone regulation of tissues, due either to hypothyroidism or thyroid hormone resistance, complicated in most cases by a health-impairing diet, nutritional deficiencies, and physical deconditioning.
But it isn’t enough that we’ve solved the scientific problem of fibromyalgia. We must now solve a daunting psychosocial problem—how to educate other fibromyalgia researchers and practicing doctors about the fact that we’ve solved the problem.
Whatever you do when seeing doctors, remain calm and composed as it is important that we aren't classed as neurotic but are researching our conditions. The pity is that we have been forced to.
Thank you once again. I am using one of the recommended Labs, Blue Horizon. I have sent for the Finger Prick test. Pity I didn't know about the discount but too late now.
So, what you are saying is....if I have used a reputable lab, such as Blue Horizon, my GP may take the results at face value and may agree to treat me with levothyroxine? If so, I may do ok on this without any need for any natural thyroid? My mum was treated with just the synthetic stuff and her symptoms went away. She suffered hair loss, weight gain etc. and these were reversed. Mind you, she was diagnosed straight off the NHS standard tests so must've been pretty bad to start off with. She died suddenly in April so is no longer around for me to ask her any indepth questions.
Every test and tablet I ever had over the last four years has been a fight. The cost to the NHS too.....body scans, MRI scans to rule out rheumatoid arthritis etc. If it all boils down to a £120 advanced thyroid test....it surely is a scandal.....
Maybe if you phone Blue Horizon they will give you the discount if you say you weren't aware. Levothyroxine is synthetic and many do fine on it. GPs wont prescribe NDT and you'd have to pay if you source it privately.
I took your advice and emailed Blue Horizon asking if they would still let me have the £10 discount using the code TUK10. I have just had a reply back from a wonderful medical secretary saying that she has asked the accounts dept to credit my payment card with £10! Woohoo! How good is that! What a wonderful company!
Thankyou shaws for your advice. I didn't think they would give me the discount retrospectively but they have.
Plus, I ordered the pack on Saturday afternoon (a none working day) and it came first thing this morning (Tuesday). So they are excellent in terms of dispatch.
Hi Sugar, Shaws always gives sound advice. I'll just say that in the years I've been reading this forum, more and more people are coming to the conclusion that the NHS is unreliable when it comes to treating thyroid condition. I'm in the U.S. and in my small area of experience, it is similar to the UK although I think they more readily do free T3 and free T4 testing. You are correct that 9.9 represents T4 which is what your thyroid gland is producing and you are under the reference range which is too wide to begin with.
It is best to arm yourself with enough knowledge which is very prevalent outside conventional medicine. I've been posting this video which is very enlightening.
I totally agree with the comments already given. I'd personally take the results along and give your GP copies to put in your notes - whether they like it or not. I just pass them to my GP and don't take them back! They're bonafide blood tests what you're having, so should be taken note of. Some GPs are open to these, because some GPs know of the limitations within the NHS of what they can offer as far as blood tests. My GP actually recommended I go for private blood testing for more in depth thyroid blood testing, because he knew we had reached a brick wall with getting anything more than the TSH done, even though he sided with me and requested FT4 and FT3 be done, the lab didn't honour the request. It's like "computer says no" saga isn't it! I think it's a strange system where the lab feels they have the right to say no to a GP's request.
Also remember that 'Fibromyalgia' is not a diagnosis it's a 'label' for a group of symptoms. These symptoms can be caused by different factors, hence this negative response from the NHS saying 'there is no cure'. It's only because they don't have the testing means to find the true cause of the symptoms. It's the same with the CFS/ME 'labels'. It gets you nowhere really because you still don't know what's causing it and therefore don't have the means to get better.
It does look like your thyroid is your issue. I have two relatives who had fibromyalgia and it went when they came off gluten. Gluten isn't advised for those with hypothyroidism anyway. So that maybe a starting point for your your healing journey. There's lots of helpful nutritional information on Thyroid UK's website and on the internet. Anything you can do to help support your body through diet and nutrition will further aid your recovery. Work on negative emotions too. I've personally found this illness has created lots of emotional trauma and also opened my eyes a great deal to myself and my emotions. I've dealt with a whole lot of emotional baggage and trying to learn how to deal with difficult emotions in a better way as part of my healing.
Good luck. We're all here for you if you need any further help. X
Thank you for your advice and reassurance so far, everyone. I have emailed Blue Horizons asking if I can still have the discount - let's hope they agree - £10 is £10!
I shall do a lot more reading and research. Knowledge is power, as they say! I will be back with more questions and to keep you informed of my progress.
Any more advice / tips regarding my first post still welcome x
To update - Blue Horizons has agreed to give me the £10 discount retrospectively! They are crediting my credit card with £10. How amazing is that! The discount code for future test orderers is TUK10.
My test came this morning so I plan on doing it in the early hours of the morning @ 4-5am to obtain optimal results. I will let you all know how I get on.
If you go and see your GP, ask for tests for levels of vitamin D, vitamin B12, folate, ferritin and iron.
All of these are common deficiencies in people with thyroid problems, and they also affect thyroid metabolism. Also, from my own experience, low vitamin D in particular can cause all over body pain - and my result wasn't even dramatically low. Ask the doctor for the results including reference ranges, then post them on here in a new question. Having a result which is in range is not enough - your results also need to be optimal. Optimal range depends on the substance being tested e.g. vitamin B12 needs to be top of the range or even a bit over. Ferritin needs to be mid-range for best effect.
I should add that testing for thyroid and some vitamins and minerals, is best done while fasting (except for water), as early as you can possibly manage in the morning.
Thank you for your advice. That's why I was planning on doing the test @ 5am so that I will have gone 12 hrs without food plus its as early as possible.
Regarding the other tests you suggest, shall I ask my GP to conduct these once I have the results of my private thyroid ones? I can't just go marching in asking for those tests without any justification.
How do ask the GP in the nicest possible way to do these tests for me? Bearing in mind that I am completely new the practice and have not seen any of the GPs before so none of them know me. I left my other after complaining about the GP there - my compaint is now with the Ombudsman.
I want to start off on the right foot with this new GP practice so softly, softly etc.
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