I am a 42 year old female. 7 years ago, I was diagnosed with a multi modular thyroid, during the ultrasound it showed up many cysts, one of which was 2cm in length. I am always aware of the goitre and can feel it pressing on my windpipe. Recently, it has got worse and my health is particularly bad too. I feel constantly exhausted and my muscles ache all the time. I’ve been back to the Doctors and I’ve just had the results back from my blood test. Doctor tells me my thyroid levels are normal (TSH 0.56 mg) but I cannot see that they’ve tested for TS3 or 4. Blood results did show my kidneys are not filtering properly and it also appears that my MCV and MCH are high (although the Doctor did not inform me of this on the phone - I asked for my results to be sent through). I am awaiting ultrasound appointments for thyroid and kidneys but I’m afraid that I’m not being tested properly and will just be fobbed off again. The last Doctor I saw 2 years ago basically suggested it was depression and sent me on my way. I am absolutely convinced this is not depression as I am extremely happy with my life but feel that I’m dragging myself through the day. Can anyone offer any suggestions. What can I do to make sure that I get tested properly. Surely, a goitre which is so large cannot be shrugged off as normal?
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MrsB1977
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You wouldn't think so, would you. But, you'd be amazed what doctors can shrug off when they know nothing about it or can't be bothered.
Just testing the TSH is totally inadequate! You need:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
A multi-nodular goitre is often indicative of Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis - hence the antibody tests. And, when you have Hashi's, levels tend to jump around. So, just because your TSH was low on that particular occasion, it doesn't mean it will always be so.
Many doctors will always try to make you believe you are depressed and don't have a physical illness. That way, they can just prescribe antidepressants or pass you on to a psy, and not be bothered any further. Lazy doctoring, I'm afraid!
Thanks for your reply. It’s an unfortunate time to be trying to seek medical help. My husband has a comprehensive private medical policy but I’ve been told none of the private clinics are accepting private patients at the moment. I absolutely hate going to the Doctor - they make me feel like I’m going crazy and some days I think maybe it’s just normal to feel this bad. I don’t know how to organise these tests but it would be assuring to know that they’d explored all possibilities instead of just waving me away. I don’t know what else tho do! 😢
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 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 .
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 as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I have read there is a close connection with LOW T3 and kidneys. Sadly T3 is rarely tested in the NHS even though it is the most important test and is the Active thyroid hormone needed in every cell of your body.
You deserve better treatment - so keep posting here and everyone will suggest and support 🌻
Thank you! I hope to get some answers soon. I’m not going to slope away this time. I really need some answers! I appreciate the time that everybody has taken to respond to me and I’m glad I’ve found this forum 🤗
Funny how doctors all come to the same decisions. In the U.S they have a system called Capitation whereby the more time spent by each doctor on a patient is charged to the doctor by paying them, 4 or 5 doctors start a practice & spilt the money, more money for the least amount of work they "spend" and pay them more money the less of their money (Big Pharma) they "spend." In the UK the doctors are paid by the government and wish to bilk them out of as much as they can as quickly as they can (only using my imagination here.)
Most Consultants are doing telephone appointments so you could get a private referral.
Your condition is serious and the doctors you've seen are idiots. Your TSH is totally irrelevant when you have a goitre affecting your breathing. Your REAL problem is that of getting pneumonia with shallow breathing and you desperately need to do something about that before you start bothering about any blood results. Pneumonia alone can be a killer without antibiotics. Pneumonia plus this horrible virus and your life is in even greater danger.
Get an appointment with an ENT specialist to ascertain how bad the situation.
As soon as I got to see one, I was whipped into hospital the same day, missing a show at the local theatre I had booked for the family (my mother went instead).
Had the old "camera down the throat" op and out came the goitre just a few days later.
The longer you delay then the more difficult and dangerous will be the op if that is necessary.
I kid you not. My multinodular goitre was so bad when I finally had it removed, that THE most experienced thyroid surgeon in the County (perhaps the entire Region) told me the following day it had been the most difficult op by far that he had done in 13 years. 2 other surgeons had declined to operate at all.
Hi. They should ALWAYS test fT3 and fT4 with TSH. You should also have your Thyroid Antibodies tested. TSH alone doesn't show much. If you're not HYPERthyroid, which a low TSH be indicative of, then with your symptoms of being tired and dragging through the day, you could have CENTRAL HYPOthyroidism, meaning the Hormone imbalance comes from your Pituitary not your Thyroid. To determine this, you MUST have a fT3 and fT4 drawn with a TSH. With CENTRAL Hyperthyroidism, the fT3 and fT4 MUST be in the upper half of the range. Just being within range is not okay. I must say, I'm not sure what's going on, as you are very tired, but you're also extremely thin(can be from HYPERTHYROIDism). What is your BP, Pulse and Temp like? Do they run low?(Hypo) Is your heart racing? Do you feel wired?(Hyper) Don't give up if you don't have an answer yet. Insist on getting t these tests. Also, get to ask Endocrinologist who specializes in treating Thyroid disorders. I wish you the best!
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