Log in
Thyroid UK
96,924 members110,740 posts

Lyme disease as a root cause for thyroid problems?

Hi all,

Has anyone been tested for Lyme disease and found it to be a root cause of their thyroid issues? Can this be tested on the NHS?

Thank you

15 Replies
oldestnewest

Yes, there is some research connecting the two. thyroidpharmacist.com/artic...

Izabella Wentz as well as others are making this connection - apparently not all cases of Hashimotos have this as a root cause, but some do. While Dr. Wentz is constantly promoting product, she nevertheless shares good research.

Reply

This was mentioned as topic recently on an online seminar about Hashimotos, also links from Root canal treatment and Epstien Barr virus and Gladular fever.

I had the later in my teens and have never been 100% health since, now I have Graves/Hashis totally believe this was what started it all off.

When I meantioned years ago to Endicrine, I was told it was told it had no link but since ive experienced not great service from the Endicrine Dr I now dont think they would know anyway. When you look into how those viruses attack your body and the science behind it definalty relates.

Reply

I believe that it does I also had Glandular Fever in my teens too. When I was 68 I had my thyroid removed. They also say travel sickness and sinus problems.

Reply

Have you been bitten by a tick? If so then yes, the NHS will do the test. If the answer is no, the Endocrinologist might have a hard time justifying the test in the current austerity climate.

Reply

I don't think so I have never been bitten by a tick. People always laughed at me with long sleeved T shirts and long jean walking in the summer but I don't have Lyme.

Testing for three different types is important the only two are in the US one in NYC.

Reply

Lyme's Disease tests are very problematical, you can have many negative tests but eventually it shows up so just testing is not the only way of checking. If, of course, you know you have been bitten then there is a higher chance. Lyme's Disease attacks many parts of the body and hides behind other problems. Can be treated with antibiotics but you often have to treat other symptoms first to get at it. Very complicated disease that can totally disable people if not treated. To my unprofessional mind, I would say if your are very ill with an undiagnosed condition, it is a high possibility and increasing regularity spreading across countryside areas particularly with uncontrolled ferns like Scotland. Conditions like PANS/PANDAS are also very interesting.

Reply

I have been chronically ill for 10 years and severely debilitated for 2 years now. I believe it is Lyme causing my symptoms

2 likes
Reply

You may also want to check for mast cell activation syndrome. That commonly goes with Hashimotos and other autoimmune conditions.

1 like
Reply

Lyme test on the NHS are generally unreliable and you would probably need to have them done in Germany or Poland where there are some specialist laboratories although even these not always show the positive result. There is a private clinic in London where they specialize in diagnosing and treating Lyme or you could try an experienced kinesiologist who can test for Lyme or the biofilm traces in your body and put you on a treatment with herbs - worked for me. Antibiotics may not generally work well for Lyme if it is established beyond something like 6 weeks from infection and infection itself is not only through ticks but some other insects too.

1 like
Reply

Many years ago I noticed a strange thing on the front of my leg: a circular rash. At the time, I had never heard of Lyme disease and it was several years later when I read about the "bulls-eye" rash associated with Lyme disease. In the years since I have been treated with antibiotics on several occasions (including a huge case of pneumonia that required a second 10-day round). Can I assume that if I had Lyme disease, it would have been cured, since by the antibiotic treatments?

Reply

Unfortunately it is quite unlikely these antibiotics would have made any difference. Lyme disease bacteria can be treated by antibiotics but it generally needs to be done very soon after the infection (within a few weeks) and not all antibiotics are effective. Borrelias burrow into various tissues in the body and produce a biofilm which is impenetrable for antibiotics so after a certain time they will just lay dormant and multiply and spread despite any other medication you might be taking for something else. That's why it is so difficult to treat this condition. There are ways of dealing with the biofilm and bacteria but you average doctor is almost certainly unaware of them. Read the posts below and you will get much better information from the links provided.

Reply

the 6 milion dollar question-- i have been very very ill since 2010 i first noticed odd things in 1998, myface swelled i had upper body rash doctor thought i had an allergy or shingles- i had chicken pox as a kid- i had cut my grass that weekend.. anyway downhill all the way with fob off after fob off- 2010 on wards extremely ill, so ill i wished to checkout of this world- mention lyme and you are basically considerd a nut job- i had a test done nhs - negative- i had a test done in germany- postive- and then i had a fabulous nhs homeopathy doc who DID understand and listened and did a test which show positive at SOME POINT, BUT inactive at the time- oh big deal at THAT time- what about when it flares up- so no help even when i took his letter to other consultants, he was ignored too- its a self help situ unless you catch it very very soon not everyone gets a bulls eye and its not only ticks- any insect or animal can carry the virus. it also cause hair loss and destroys cells and lives. it is too complicated an dtoo expensive to be treated by nhs, as they have not got a clue!

1 like
Reply

Bluepettals. I had a lot of nasty symptoms last year and my kinesiologist found out it was due to the activation of some of the Lyme causing bacteria though I don't think it was a completely new infection as the biofilm traces were testing positive. Anyway I was put on a herbal protocol which proved to be very effective and after 6 months I am no longer testing for Lyme. It might still be dormant somewhere or maybe eradicated for good which is possible as me friend's case testifies though she was battling it for years. If you were interested in the kinesiology route I am happy to supply my kinesiologist's details by PM.

Reply

This article was in the BBC news yesterday....

Lyme disease can be diagnosed by 'bull's eye' rash alone

Lyme disease can be diagnosed by the rash alone, new advice for the NHS says.

People with the "bull's eye" circular rash do not need a blood test and should be treated immediately to avoid complications, the National Institute for Health and Care Excellence says.

Waiting for lab results is unnecessary and can cause delays in patients being prescribed the antibiotics they need.

Lyme disease is spread by tick bites and can be debilitating.

A blood tests can check for it but may not give a positive result until eight weeks after the patient is bitten.

Prof Gillian Leng, deputy chief executive and director of health and social care at the National Institute for Health and Care Excellence (NICE), said for most people with Lyme disease, a course of antibiotics would be an effective treatment, "so it is important we diagnose and treat people as soon as possible".

"A person with Lyme disease may present with a wide range of symptoms, so we have clear advice for professionals about the use of lab tests for diagnosis and the most appropriate antibiotic treatments," she said.

"If a characteristic bull's eye rash is present, healthcare professionals should feel confident in diagnosing Lyme disease."

Lyme disease can be difficult to diagnose. It has similar symptoms to other conditions and there is not always an obvious rash. The rash can also appear in a number of different ways, as these images from the NICE guidance show.

Symptoms can also include:

a high temperature or feeling hot and shivery

headaches

muscle and joint pain

tiredness

loss of energy

But if there is a delay in treatment, more severe symptoms can develop months or years later, including:

pain and swelling in joints

nerve problems - such as pain or numbness

heart problems

loss of memory or concentration

Lyme Disease

Ticks that may cause Lyme disease are found all over the UK

High-risk areas include grassy and wooded areas in southern England and the Scottish Highlands

To reduce the risk of being bitten, cover your skin, tuck your trousers into your socks, use insect repellent and stick to paths

If you are bitten, remove the tick with fine-tipped tweezers or a tick-removal tool found in chemists

Clean the bite with antiseptic or soap and water

The risk of getting ill is low as only a small number of ticks are infected with the bacteria that cause Lyme disease

You don't need to do anything else unless you become unwell

You should go to your GP if you've been bitten by a tick or visited an area in the past month where infected ticks are found and you get flu-like symptoms or a circular red rash

These symptoms can include feeling hot and shivery, headaches, aching muscles or feeling sick

Source: NHS Choices

A growing number of high profile people have spoken out about their experiences of the problems of living with Lyme disease due to delayed diagnosis.

American model Bella Hadid has spoken of the challenges of continuing to work with the disease because she's often exhausted and needs to take regular medication. Her mother, who starred in The Real Housewives of Beverly Hills, and Bella's brother also have the disease.

Singer Avril Lavigne said it had taken months for her to be diagnosed with the disease, which had left her bedridden for two years. She got the first symptoms on tour, when she was achy, fatigued and couldn't get out of bed. She said she had felt so bad at one point she had "accepted that I was dying".

Former England rugby player Matt Dawson got the disease after being bitten by a tick in a London park in 2015. It caused a bacterial infection to spread through his body and eventually left him needing heart surgery.

Matt Dawson: I had to have heart surgery after a tick bite

Mum 'paralysed' after tick bite in garden

John Caudwell offers over £1m for Lyme Disease research

Phones 4U founder John Caudwell funds a charity Caudwell LymeCo that funds research he hopes "will lead to a truly reliable test and cure via the NHS for every Lyme disease patient". He and 14 other members of his family have the disease.

Veronica Hughes, chief executive of Caudwell LymeCo, said she hoped the new NICE draft guidance would increase the number of doctors who felt confident diagnosing a Lyme disease rash on sight.

"Caudwell LymeCo Charity hears regularly from people whose doctors have diagnosed an erythema migrans but decide to check with a blood test, not realising that the rash is the more reliable of the two," she said.

"Waiting for blood test results always delays treatment. When a patient has the rash, this delay is unnecessary and reduces the likelihood of total cure."

1 like
Reply

Hello, Yes Lyme Disease and its associated co-infections as well as other related infections can cause many, many symptoms including being the root cause of hormone problems which of course includes thyroid illnesses.

Unfortunately it is unlikely that this will be picked up in the UK, and NHS Lyme tests are unreliable, unless a tick bite is caught early and treated appropriately. This is often not the case as the bite often does not leave a rash.

It wasn't until I took my daughter (now 38) to the USA where she had the correct tests and saw a Lyme literate doctor there that her diagnosis was picked up. She had been getting steadily more ill since the age of 12 and by the time she saw the specialist she was EXTREMELY ill. She is now being treated and her condition has improved markedly, but the longer Lyme Disease is left untreated the deeper hold it has on the body as it changes form and can hide in many tissues.

We wasted many, many years chasing the thyroid route as we were convinced that this was her only problem, but it turns out that her thyroid issues were merely symptoms a a MUCH bigger problem. Sadly doctors, PHE, thyroid advisers and other specialists whose specialties (heart, rheumatoid, immunology, neurology - the list is endless) refuse to take the Lyme threat seriously so it is left to indiviuals to find their own way.

The best way to start is by reading this book which is BRILLIANT - amazon.co.uk/Toxic-Neil-Nat... Do not get the Kindle version as there are illustrations and diagrams which you really need to see and I don't find Kindle is user friendly in such situations.

Also check out this website. It was co-founded by someone who had herself been diagnosed with a thyroid problem. Since going to the specialist in the USA we have found countless others with thyroid problems and Lyme Disease. lymediseaseuk.com/

This is the best and most informed Lyme Disease website in the UK, and is run by truly lovely people who've all had experience with Lyme Disease. Despite these problems they are very active in the field.

Don't let the NHS fob you off if you are convinced you have a Lyme problem. There are NO specialists in the UK, and most doctors are ill informed.

Jane x

3 likes
Reply

You may also like...