Thyroid UK
89,130 members103,652 posts

"Renagade" Endo..... I need to find one like this please? !

I've just read this article from the Telegraph with great interest. The thing that caught my eye first was the woman's initial description of her symptoms..“But I couldn’t sleep because of these huge adrenalin rushes that afterwards would leave me collapsed on the floor unable to get up. I felt like I was dying.”

I have been very ill for over 5 years, 90% housebound now and feel desperately ill. I was originally labelled with CFS/ME and then 3 years ago tested positive for Lyme Disease and co infections, was treated with numerous approaches (including 6 weeks of intravenous antibiotics in Germany) and all to no avail. I'm still so ill.

I have always suspected something is very wrong with my adrenals and perhaps thyroid. My GP tells me all bloods are normal and will go no further.

Please, can somebody help and recommend a good Endo that will think outside the box (deals with bio identical hormones) and take the time to put the pieces of potential adrenals and Thyroid problems together where nobody else has. I live in the South East but could be driven to London or further. Sorry to sound so desperate, it's just that I'm at my wits end with living life in this state :(

telegraph.co.uk/news/health...

8 Replies
oldestnewest

Lemnia as a first step you need to get hold of your blood test results which you're legally entitled to. Never accept NHS doctors saying everything is normal. Are the NHS aware of your Lyme diagnosis and treatment?

Are you having any treatment for Lyme disease now?

As a matter of interest, I'm hypo and also have Lyme disease. My thyroid meds do not work as they should due to Lyme.

1 like
Reply

Cinnamon Girl, thank you for your comments. I will ask for the results from GP. I have thyroid antibodies also, again, no treatment. For Lyme disease I had to do it privately as it was my test done in Germany for Lyme Disease that was positive, the UK test was negative. But as I lived in CT, USA for over 20 years I realised I needed to go further and test again. Since then I've been told there's a 60% chance of an incorrect result from Porton Down where the UK Lyme test is done. I am currently doing Rife Machine for Lyme...for the past 6 months, it's done nothing. I'm still just as ill, mostly bedridden. I'm considering going to the USA for treatment but there's no sure bet for treatment as I'm sure you know. Thank you again.

Reply

I've sent you a PM Lemnia which I hope will be helpful.

Have a look at posts from janeb15 whose daughter has Lyme plus other conditions.

The USA seems miles ahead with their research and knowledge, the UK has no Lyme specialists and isn't being taken seriously.

Keep reading and learning.

Reply

Thank you so much, I replied to you. I've had 5 years of learning now and could pretty much write my own book on the Lyme Disease Disaster.

Reply

Lemnia,

Email dionne.fulcher@thyroiduk.org for a list of member recommended endocrinologists.

Dr. Peatfield is well regarded on the forum and has a clinic in Crawley. He resigned his GMC registration so can no longer prescribe but offers advice.

Reply

Thank you I will email for the list.

Reply

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results

Come back with results and ranges on new post and members can advise

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

list of symptoms

thyroiduk.org/tuk/about_the...

Reply

Thank you so much. I will do that and come back and post again.

Reply

You may also like...