I haven't been on here for a couple of years but still suffering with hypo symptoms. See older posts ...
Six months ago I developed a red rash on my neck, can anyone tell me if this is related to thyroid? Been back & forth to Gp for blood tests but as usual they tell I'm fine despite me ticking the box for almost every hypo symptom. In fact, my gp told me the nhs could do nothing for me & that i'd be better off seeking out alternative care despite him knowing I can't work & don't receive any benefits. Symptoms have gotten a lot worse, this summer was the worst. Swollen & puffy ankles, arms, tummy, hands fingers & face. Has anyone successfully received treatment by going private ? If so, is it best to see an endo or Gp?
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Butterfly65
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Before you consider spending money on a private doctor, post your latest test results, with reference ranges, and say what thyroid meds you are taking for members to comment.
Ideally we need to see
TSH
FT4
FT3
Vit D
B12
Folate
Ferritin
As you already know that you have Hashi's, are you strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies?
I took T3 for a around 8 months, I didn't feel any different. I have completely given up with the NHS. I contacted thyroid uk & was sent a list of private Gp's, most of them are London based, hence my question, who is better to help, an endo or Gp. I don't want to sound dramatic, I know there are many out there suffering as I am or worse but I really am at the end of my tether now.
That's rather the luck of the draw, many members have been disappointed with private consultations - endos and GPS - as much so as NHS ones.
If there are any that you can travel from the TUK list then make a new post asking for feedback on them. Replies will have to be by private message as we can't discuss individual doctors on the open forum.
What are your levels of B12, folate, D3 and ferritin? You need to know your levels to know if you are taking the right dose of supplement, too much can do harm where Vit D is concerned and too little wont raise a low level enough to reach the recommended range of 100-150nmol/L.
The multivitamin will most likely be a waste of time. They generally contain too little of anything to help, and usually the wrong and least absorbable form of active ingredients. If it contains iron then that will affect the absorption of anything else as iron needs to be taken at least 2 hours away from any other supplements. If it contains calcium and/or iodine (kelp) then these should be tested and only supplement if found to be deficient.
I know you're trying to help but I've tried to help myself with vitamins & diet for long enough now. I'd just want to know if anyone who has been dismissed by the Nhs has had any success with either a private endo or GP.
I went to see a functional practitioner. She is a great help, getting me from bed bound, to the gym and dance classes. She helped me with testing , prescribed T3, supplements and a complete lifestyle overhaul. Also lost 3 1/2 stone.
SeasideSusie will help you, when you post blood test results.
I just wanted to add, I went through many of those symptoms when I became quite unwell.
It was,extremely difficult trying to get my GP to listen to me. I managed to get diagnosed autoimmune thyroiditis by a Dr in London. I was told I was overprescribed levothyroxine.
Due to a rash covering most of my body, after my puffy, itchy, ankle turned into a nasty wound. (I was away for a few days, had to attend minor injury centre. The wound was dressed 3 days in a row, I was given antibiotics). I then got an emergency dermatologist app when I revisited my GP. My levothyroxine dose was reduced twice over the next few months. However, I still felt very unwell. I had an ultrasound of thyroid (again by London Dr), showing my thyroid was really struggling. GP wasn't interested because guidelines informed her my next blood test wasn't due.
It's really hard to know where to turn isn't it?
I knew I needed help.
I came to this site, and started to understand thyroid patients have to fight for correct treatment.
I made an appointment with Dr P and read his book. Amazing man. He got my thyroid much more on track.
Filling in the THYROID UK list of symptoms was also truly remarkable. I no longer felt like a hypochondriac. My symptoms are experienced by other people. Many other people, also not treated adequately.
I am still a work in progress regarding overall health, due to being diagnosed with other AI disease whilst thyroid struggled. But, I'm no longer isolated. (I do wonder if I would have other diagnosis made if GP had listened and acted accordingly, instead of letting me get so sick).
I am not suggesting you make an appointment with Dr P, or a private practice GP yet. Even though Dr P felt like a lifeline to me, because I was so unwell at the time.
Rather, I agree with SeasideSusie, don't rush anything, you will get great advice here. Then, you can work out what you need, and who can best serve you.
In fact, you may well be the best person to treat you. I truly believe Dr P would wholeheartedly agree. He is in the business of teaching us to help ourselves.
He knows how hard it is trying to get thyroid help through conventional NHS Drs.
Thanks for your reply & advice, pleased you finally got help. I'm struggling to concentrate on the smallest of things these days so trying to grasp & understand how best to help myself is becoming increasingly difficult. I'm in a very dark place right now physically, mentally & emotionaly. Who is Dr P?
Dr Peatfield wrote the book, How To Look after Your Thyroid.. (think that's right). Get a copy. It's a great book. I cried on first read! I felt understood, at last.
My reflexology practitioner loaned me a copy. (Then I purchased it). After telling me, she felt my body was shutting down. I felt my body was shutting down 2! I was very unwell. I had gone to her, as no one was helping me, and I knew getting anxious wasn't helping my overall health.
So, I read the book. I joined HU.
One day, someone wrote about seeing Dr P. I contacted that person, through PM.
I couldn't believe he still practices. He is in his 80s. Practices as Nutritionist, having stepped down from General medical practice.
As a Dr he was not willing to compromise on patient care and blindly follow NHS guidelines concerning thyroid health.
Rather, he wanted to (and still does), help patients get as well as possible. He cannot prescribe meds, though can advise what supplements, and so much more...
I cannot praise him highly enough. I felt I was losing my mind because my (previous, I changed her!), GP just made me feel, I was a hypochondriac, wasting her time.
Dr Peatfield to me, was gold standard care. He set me on the right path. He examined me. Gave careful consideration, to a full and holistic assessment of my health/illness. Yet, he was so sure I was suffering adrenal insufficiency, he advised supplements, telling me I did not need testing (which would save me money).
I took the test anyway, so that I got a baseline.
You bet, he was perfectly correct in his diagnosis. He also brought my thyroid back after I was told it had died and my tsh was <0.01 (0.27-4.20).
Please, post your latest results though. SeasideSusie and other more knowledgeable members here, will really help you, asap. Don't suffer too long.
There are many people to help. We are all in this together. Most of (us), have been where you are right now. Don't despair.
Thanks for the info. My husband picked up my results this afternoon. I moved to a new county 18 months ago & thought the new GP practice looked good by the reviews it had, I was mistaken.
They had all my history on record, I told them all of my Symptoms & what I'd been tested for in the past but from the print outs I can see they only tested my TSH along woth a long list of other tests I didn't request.
I changed my GP practice to find, where GP thyroid input is concerned, they are mostly the same!
I believe its a combination of poor thyroid education thus poor knowledge to treat thyroid patients. Also, GP fear they must follow blood testing guidelines, and ignore patients symptoms.
Many thyroid patients, myself included, are having to source and fund our own treatments.
Of course, this often means we are left to flounder whilst feeding very unwell.
Have you got a thyroid support group near you?
I've found them to be very helpful.
Just like here on HU we can learn from each other in meetings. And, on bad days, we can vent to people, who totally understand what we are experiencing.
Keep reaching out. It's the best way to find what you need to get well.
This group is invaluable. Some members have even taken the plight of thyroid patients poor treatment to the House of Lords.
We are not going to go away. We deserve to be treated well.
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