This may help you find the answers you're looking for

[janeb15]

There is a common thread running through many of the posts in this group. Where, how, when will I or my loved one get better? When will I stop hearing from my doctor that it’s all in my imagination or that he’s done all he can for me? When will I stop hearing that this or that thyroid or supplement test will give me answers, or that all I need is to add various supplements to my regime or change my thyroid medication? What can I do when none of the above has helped me and I feel cast adrift and alone?

The first step towards finding the answers if you are in this position is to think outside the box. There must be reasons why you are not getting better, and you may need to look for them yourself since you are the only person who will.

When, after over 20 years of looking, we finally found the help my daughter needed it wasn’t through wasting our money on more and more expensive thyroid tests and doctors, but from a doctor in the USA who knew which tests were necessary to diagnose her illness. He asked her why she was continuing to have so many thyroid tests when they didn’t come up with answers and she was continuing to become more and more ill. Why indeed? Many of you will know the answer to that. We were desperate. The truth was that her thyroid problems were merely a side issue, a symptom of much greater issues which were deeply seated and of long standing.

What we discovered was that her body had been ravaged by Mycotoxin Illness (not recognised in the UK), Lyme Disease (badly tested, diagnosed and treated in the UK), MCAS (rarely considered and tested for in the UK), chronic HHV6 (never tested for in the UK), pyroluria (never considered by her private thyroid doctors), and a number of other issues.

We had made the mistake of latching onto thyroid illness and made the wrong assumption that once that was resolved all would be well. How wrong we were. Her thyroid function along with every cell and system in her body had been attacked over the years by inflammation caused by the above conditions and their accompanying infections. Her thyroid symptoms along with a myriad of other symptoms so often associated with thyroid disease had been caused by that inflammation and we were confused and desperate, so grasped (incorrectly we now know) on to the thyroid banner. As well as legitimate (but sadly ignorant) private doctors there are also plenty of charlatans out there in the UK who are well aware of the shortcomings of the NHS, but happy to promote themselves as thyroid “experts”, and who are delighted to take your money. It makes it all the more difficult to find someone who can help.

Lucky are those whose thyroid function is restored by the correct thyroid replacements and supplements, and I'm delighted for them, but there are many, many people for whom this is not the case and they are not being offered the tests they need to find the cause of their continued distress.

However, help is at hand and I cannot begin to express how much I recommend a brand new book called “TOXIC – HEAL YOUR BODY” by Dr. Neil Nathan. amazon.co.uk/Toxic-Toxicity...

Written by a brilliant man with 47 years of medical experience it sets out in some detail what happens when the body is assailed by invasive microbes, and how every body tissue is at risk. His compassion and humanity shine through every page. His writing is very readable and easy to understand and I urge anyone who is still searching for answers to buy this book – in it you may well find what you are looking for. I was brought to tears whilst reading it as Dr. Nathan could have been a fly on the wall of our home for the last 26 years. His insight into the life of someone who is chronically ill is extraordinary. Before you are persuaded to spend more money on expensive thyroid tests and doctors please read this book and enjoy (and maybe weep a few tears too)!

Jane x

[Pamanda]

Hi Jane,

Thanks for this post. I just wanted to reiterate your point 'There must be reasons why you are not getting better, and you may need to look for them yourself since you are the only person who will.' This has also been my story, and through Dr. Nathan's books and podcasts I finally have hope.

Thank you for your work in continuing to push the education of us 'chronics'.

xx

[loueldhen]

And as Malcolm Kendrick says 'inflammation, inflammation, inflammation'. It's all there to tell us something.

[Marz]

Thank you for the new book info ... his last book was also informative with the order of testing/treatment clearly stated ... Will look forward to reading and learning more. 😊 x

[Hidden]

Apologies if you think I'm being dismissive of your struggles. If you've struggled to get an underlying diagnosis for years and you think improvements in the NHS are needed, then it would be beneficial if you got involved with patient participation/engagement programs to attempt to rectify this. There is also the British Thyroid Foundation who may campaign your behalf.

I understand your attempts to help others with the same problem. However, you cannot say how many people are similarly affected or whether the vast majority of people with Hypothyroidism just take the tablets and are OK. It may be, for them the "condition" is not curable.

It's not entirely comfortable to know that for the rest of your life you will be dependant on medication. Your well intended post may lead to many people to have false hope and buy this book unnecessarily and at some cost.

Your post is basically an advert.

[humanbean in reply to Hidden]

I was under the impression that the British Thyroid Foundation was anti-T3, anti-NDT, anti-combined treatment with T3 and T4. Also, that they were quite happy with treatment being determined by TSH alone.

I admit it has been a few years since I paid any attention to the British Thyroid Foundation. My impression then was that it was just a charity cover for the British Thyroid Association who want patients to believe the very simple model of thyroid function that endocrinologists espouse.

And from the experience of patients on this forum and other thyroid forums many endocrinologists don't really believe all those symptoms that patients tell them about, they just think we need anti-depressants to go with the Levo we get prescribed (if we're lucky). And we only get treated when TSH gets to 10. Well, there are plenty of people who have rock bottom thyroid hormone levels and a TSH of 4 or 5 or 6. But many of us have to pay to to find out what our Free T4 and Free T3 are because doctors believe that only TSH counts.

Doctors (both GPs and endocrinologists) have discovered that they can make their lives easier and save money by refusing to test for certain things, for example central hypothyroidism. Eventually they will make it vanish, I'm sure.

I would find it hard to believe that the BTF does anything useful.

[janeb15 in reply to Hidden]

Hello Myrs31,

I hope that you are one of the very lucky people for whom the usual thyroid treatments are successful. If that is so I am genuinely happy. It was for patients like you that I volunteered for and was a trustee of Thyroid UK for about 10 years, did a considerable amount of work for that charity and was one of the administrators on this forum when it was set up. I'm afraid that the BTF was not capable of coming up with any answers for my daughter any more than any of the private thyroid specialists she saw, and like many, many other UK patients we had to look elsewhere for help for my daughter.

I'm not sure what point you are trying to make in the remainder of your post, but I do know that there are countless patients travelling to the USA for help because I've met many of them in the clinic that my daughter attended. ALL of them have been and continue to be on thyroid replacement, although in my daughter's case, as she recovers she is able to reduce her her dose. This has been made possible because her numerous problems have been identified and treated. The NHS had given up on her.

I'm sorry that you consider that my post was an advert for a book. I'm merely passing on information that I know is working for thousands of patients and is not available on the NHS. I'm glad that you feel that the NHS is working for you. I can assure you that is failing many of us. It failed my late husband who died from one of the conditions that was identified in my daughter in the USA, a condition that could well have killed her too had we not acted when we did.

What I have discovered above all in this journey is that it is important to keep an open mind - always.

Jane x

[Hidden in reply to janeb15]

Thank you.

Please excuse me for my ignorance, being a new member of this forum. Please read my response to Hillwoman for further explanation.

I wish you well.

[janeb15 in reply to Hidden]

I'm sorry to hear that both you and your wife are having health problems. I truly hope that you find what you are looking for. Jane x

[Hidden in reply to janeb15]

Thanks. Fortunately we are both well at the moment. I hope there are positive developments with your particular circumstances. I can't see there's anything I can do to contribute.

[Hillwoman in reply to Hidden]

I think you are being rather harsh on the OP Hidden . Jane is a longstanding member of the forum, and many here have found her holistic views on chronic health problems very helpful.

Many on this forum are also actively engaged in a campaign to get better NHS care for thyroid disorders. We are facing an erroneous diagnostic and treatment paradigm that has prevailed now for decades. You might want to read the forum posts by Diogenes, AKA Dr John Midgley, a researcher and analyst in this field.

[Hidden in reply to Hillwoman]

I take your point and apologise for any harshness on my part, I am a new member of the forum and hence ignorant of the long-standing or excellent "pedigrees" which any members might have.

I do not suffer from any thyroid condition and joined Healthunlocked because of my cancer, sleep disorder and damaged spinal nerves.

However, my wife was diagnosed with Hypothyroidism earlier this year and it's because of this that I dipped into this particular forum.

Perhaps I should just dip out again before upsetting anyone else, but the information you give is most helpful.

Thank you for your feedback.

[dang in reply to Hidden]

Don’t dip out. Stay and help your wife. You can find a lot of information here to help her, or recommend she sets up her own account.

there are so many people here with so many experiences it can really help your wife. Some are doctors, most are patients, but the bottom line is everyone wants to help

[Hidden in reply to dang]

OK and thanks, I'll stay "dipped"

[Marz in reply to Hidden]

Hidden When I read something here and wish to reply - I click onto the Username and either read the Bio - if there is one - or read earlier Posts or Replies for information gathering - before I put my big foot in it

I would continue to dip in if you wish to stay ahead of the game for your wife.

B12 injections may help the pain with your spinal nerves and low VitD is implicated in many cancers. I was very LOW in both !

[Hidden in reply to Marz]

Thanks Marz. I'll take your advice, I am too handy with my big feet!

[Marz in reply to Hidden]

Enjoyed your discussion on NHS England - Call For Action !

[Hillwoman in reply to Hidden]

Sorry, I've only just seen your reply. There is no need to leave the forum, and perhaps for your wife's sake you could continue to read up on her condition and post questions you have.

I don't think anyone here would ever lay claim to a 'pedigree', as you put it. This is not a hierarchical forum, though I do think it's a good idea for new members to read the information presented here and research past posts before calling someone's comment into question.

[marram]

I am quite sure that there are some who do have possibly multiple issues rather than the thyroid, my thought is that until an actual thyroid condition has been ruled out, this could lead to many years of frustrating and expensive investigations.

If the thyroid is not functioning properly, and there is no obvious thyroid disease such as Hashimoto’s, post partum thyroiditis, Graves’, thyroid cancer, and of course thyroidectomy or RAI, or any pituitary problems, once those possibilities are ruled out, and you are left with a sluggish or failing thyroid function, then by all means look further.

[janeb15 in reply to marram]

Thank you, Marram. I agree. This is exactly the situation we found ourselves in. We had so many false promises of getting my daughter better within 6 months from renowned thyroid experts over a period of 15 years that we were left feeling very alone and desperate. Some of them recommended adrenal meds. that were in fact making her condition worse. Since going to the USA we have met countless other Brits who found themselves in a similar position, and all of them, like my daughter, were extremely ill. It really was a last resort for all of us which is why this book by Dr. Nathan will hopefully be the beginning of a new understanding of chronic illness in the UK and around the world. Jane x

[StillEverHopeful]

I hope you’re wife responds well to the thyroid treatment and you get good health care too.

[Hidden in reply to StillEverHopeful]

Thank you, my wife is responding well. Luckily it seems to be a straightforward case. She is taking levothyroxine and her thyroxine and TSH levels now appear normal. She actually never noticed any symptoms of hypothyroidism and it was only picked up when she had a health MOT. She is quite satisfied with her treatment at the moment, time will tell.

I'm quite horrified at the apparent number of people for whom it is not straight forward and it appears that the standard investigations to rule out other possible causes is limited.

[Marz in reply to Hidden]

As long as you remember 'normal' is an opinion rather than a result then all should be well. 😊 Results with ranges are legally yours so you can monitor progress and check what has been missed. Once on treatment TSH is good around 1 or under - FT4 & FT3 in the upper part of the range. Does your wife have Hashimotos ?

B12 is good above 500 - Folate and Ferritin are good mid-range and VitD around 100 .... all important for thyroid sufferers long term. ...

[Hidden in reply to Marz]

Thanks again. I am learning by the minute. My wife was diagnosed with low T4 levels in Jan this year. She was never given a specific diagnosis, no mention of Hashimotos. Her notes simply say Hypothyroidism.

The discovery was made after a whole raft of blood tests which only incidentally included serum T4 6.1 and TSH 138. NO T3, NO B12, NO Ferritin, NO Folate, NO VitD. From the tests there was no indication of any kind of inflammation

Tests of T4 and TSH repeated in May and Aug, nothing else. The Aug test T4 16.2 TSH 3.5

Would you suggest I get them to test her vits/folate/ferritin?

[Marz in reply to Hidden]

Have sent you a PM so as not to interrupt janeb15 's thread - apologies Jane

[janeb15 in reply to Marz]

x x

[StillEverHopeful]

That’s good for your wife. I know folk that respond well like your wife too.

I’m in the latter group, I had to sort private blood tests to find out about T3/antibodies/vitamin & minerals to prove I was under medicated. (And discover that vitamins &minerals weren’t optimal although gp is content if they are only just in range)

Also no easy way to try other thyroid meds. I think it’s a multi layered issue that needs more research and availability of a variety of treatment options.

Haven’t been able to work for 18 months and very limited in energy.

So many equate “looking well” as feeling well!

Thinking of throwing glitter at the cobwebs for Christmas decorations this year!

All the best.

[Hidden in reply to StillEverHopeful]

I understand the dissonance between "looking well" and "feeling well". I once told someone they looked really well. The angry response was "It's the bl---y steroids"

Good luck with the seasonal spiders.

[janeb15 in reply to StillEverHopeful]

Hi StillEverHopeful, That's rather the point of the book I'm talking about. In our experience no GP, private doctor or endocrinologist in the UK will take the matter further if they've carried out what they perceive are the necessary thyroid tests. They don't think holistically or in an integrated way because the actual reason behind a thyroid problem might be "outside their area". If you are STILL unwell despite having tried all the thyroid tests and treatments and after taking specific supplements then there has to be a reason, and that's where Dr. Nathan takes up the story. He looks for those reasons until he finds them, and then sets about putting things right. It all makes such sense. Jane x

[StillEverHopeful in reply to janeb15]

@janeb15 thank you so much for posting about the book I ordered just before you encouraged me to think about it.

Starting levo gave me my brain back and my eyebrows with some energy improvement but my energy/fatigue /has big fluctuations with post “exercise” fatigue that makes me wonder if more is going on and your post has encouraged me to feel a little hopeful that I may get to do the things I enjoy again.

I’ll make sure I have a box of tissues when I read it. Xx

[janeb15 in reply to StillEverHopeful]

Hi, I really hope that the book gives you some help. It will certainly give you food for thought, and it's a very easy read. From the very beginning of it I kept saying to myself - yes, that's exactly what life in our house was like. It's a very different paradigm of diagnosis and treatment compared with what is happening in the UK at the moment, and it saved my daughter's life. I wish you all the best with it. Let me know if I can help further. Jane x

[StillEverHopeful in reply to janeb15]

Than you so much. I expect I’ll have some questions. ❤️ x