I'm brand new here and desperately hopeful that I will find others in a similar situation who can reassure me that this endless waiting for a diagnosis is normal. I presented to my GP in June this year with what I was concerned were symptoms of hypothyroidism - Sudden weight gain, constipation, extreme sensitivity to cold, brain fog and depression. What I had failed to notice was the lump in my neck which the Doctor noticed immediately. Bloods came back normal, Ultrasound results recommended a FNA biopsy which was inconclusive due to insufficient cells and being too heavily blood stained. Last month I had an iodine scan which came back showing normal thyroid function and I have now been referred for a second FNA biopsy. I am 3 months down the line and seemingly no closer to a diagnosis or any treatment. I am obviously most keen to find out if the nodule is cancerous, but also what some treatment for the symptoms but everything keeps coming back normal or inconclusive. Has anyone else experienced this, I am so frustrated.
Many thanks
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Roopidoo
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I've not had your specific experience, but when you say your bloods were 'normal,' did you actually have sight of them? Often, results that doctors describe as normal are anything but. If you could post them all, along with the lab reference ranges, that would help us to make suggestions.
Thank you, I had no idea I could request a copy. Have called my GP and can collect a copy later today. I will come back with the details to see if they mean anything to you as I know they wont mean a thing to me
I had 3 inconclusive FNA. It took 10 months to get a diagnosis, I eventually had a surgical biopsy. However, that was 11 years ago and treatment may have changed now.
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Hello. I had similar experience. For years I had unexplained weight gain, very cold, memory problems etc. My GP did thyroid tests which came back normal. I knew something was wrong but made excuses for myself, working shift work, leaving job, moving house etc. I then found a lump in my neck, my GP referred me to hospital as she thought it was a goitre but referred me to an endo just to be safe. My initial tests (incfluding biopsy) were inconclusive so I had surgery to remove my thyroid lobe which contained the lump, I had stage 2 (nearly 3) papillery thyroid cancer so 4 weeks later i had a second op to remove the rest of my thyroid. Just over 3 months later i had radio active iodine treatment. So none of my test results were conclusive, it was only after surgery that i knew it was cancer. I was told thyroid cancer is very slow growing, so please try not to worry (no point saying that i know). Sounds like you are already seeing as ondo, but if not then you should. My first op was Jan 2014 , so relatively recent. If you have any questions feel free to message me. Good Luck. X
Hi there, and thank you so much for your reply. I'm sorry to here about your experience but it helps to here that others have had a similar journey and a good outcome in the end. I am under a endo but have only had 1 consultation and his letters have been absolutely useless. Each time I have had to speak with his secretary to make sense of them. There just seems to be such a casual lack of urgency that I find so hard to accept when cancer is a possibility. I keep being told that this must mean they aren't worried, but I am fully aware that only a biopsy can give me the reassurance I need and until I get that, they cant actually be sure of anything. I know there is something wrong. I am an otherwise fit, very active healthy person and I just don't feel well. Fingers crossed I get some answers soon.
Did you have the radioactive iodine scan? If you don’t have cold nodules you probably don’t have cancer. Here they do the scan first and then biopsy the cold nodules. Hot nodules aren’t cancerous, or so I’ve been told. Cold nodules can occasionally be cancer.
My scan showed cold nodules in my right lobe and the FNA biopsy was inconclusive so they removed my right lobe in surgery. The initial pathology was also inconclusive and 2 months later I got the final results of no cancer.
Hi there and thank you for your reply. Yes, that was the understanding I had when I was referred for the scan (although my understanding of it was really quite vague, my consultation was fast, very little in the way of explanation and a language barrier to boot). Anyhow, the letter I received didn't say anything about the nodule being hot or cold, simply 2 lines saying my scan was normal with no sign of Thyrotoxicosis (which I had to google) with normal bone profile. That was literally it, with no information about what would happen next. I called the secretary who agreed the letter was poor and unclear, then called me back to say the consultant had ordered a repeat biopsy. Still no mention of hot or cold nodule. I feel totally in the dark and uneducated on this and its hard to ask questions when you don't know what to ask.
Who wrote the letter? Your GP or an endocrinologist? You should be able to see your GP for the results, he likely has a better picture than your letter gave you!
Aaaah really?? Yes, it was from the endocrinologist. I never thought of that. I just assumed that all communication would be through him now I've been referred. I'm such a novice with all this. Thank you so much for your advice
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