Its helpful to hear other peoples experiences and it also highlights the similarities but also how peoples illness/experience can vary. Its good to see and learn from where peoples experiences could have been better so I can( and others) can try to be as informed as possible. Its because of this site (Thyroiduk) that I went to a private endocrinologist and my Thyroid lump was noticed. If it wasn't for forums like this I wouldn't be in the situation of having these checks done so I am so glad for the support Thank you.
I was told today that I thyroiditis by endocrine surgeon. They couldn't tell if my recent biopsy was cancer or not (U3) and he said hard to assess with thyroiditis on ultrascan. Lump is 5.5.4, biopsy result THY3F so will have an operation in Jan and high risk of voice damage due to my inflammation apparently ( he wanted to warn me). My BMI is high so I am trying to eat better and lose some before operation. Im still in limbo as to if its cancer but I am grateful that im having it looked into. I saw in a picture from a year ago a slight lump on my neck so I've had this at least a year. So thyroiditis is hashimotos? I've been diagnosed with that now. Need to consider how to manage that better, I have vitamins but Im low on T4 too. He said he might consider giving me some medication. He said that NHS has an outdated system for managing thyroid and im ok by NHS but am actually low in T4. Many thanks again
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Sleepy101
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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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP/endo to test vitamin levels
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Good you went to the doctor so you can get better. If you can it helps to plan out your meals, space them out and get on an eating schedule. Try to eat something in the morning within an hour of waking. Getting your eating on schedule can really help the metabolism. I've found low carb to be the worst for my thyroid and it made my TSH higher. Recently someone showed me an old photo from 12 years ago of myself and I was caught off guard by something I didn't see all those years ago-a large lump on my neck. It was bulging! A year later I had surgery.
Thats good advice thank you. Trying to eat healthier. And I am glad I am aware sooner than later. I just need to clarify with the surgeon if the op is purely diagnostic to see if cancer or if I need my lump out even if not because its pushing on my windpipe. Its crazy I saw a photo of myself laughing with head back from a year ago and I can the lump now when I didnt notice at the time.
Yes I was shocked! I had a rare hurthle cell adenoma which is a benign form of a very aggressive hurthle cell cancer so it was removed because they couldn't determine with a fine needle biopsy. I was 27 at the time and these occur in less than 5% of the population and usually found in 70-80 year olds! I have no idea why I got it. Endos no longer recommend removing nodules and goiters as much as they used to unless it is suspicious or uncomfortable. Mine was the size of a golf ball and choking me.
Ooh ok so v rare. Glad its out for you due to the size but also to get rid of cancer. Are you in remission now? Do you have check ups? Mine is a little uncomfortable, what I'm not sure of..is will they leave it if its not cancerous even tho its inflammed. Do I need to know, I suppose they are the specialists.
It was a Hurthle Cell adenoma which is not cancer but since there's not enough information on how they behave it was best to remove it. Going on Levothyroxine can help with the inflammation or further growths. Needless to say I take mine religiously.
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