I had a neck ultrasound today which showed a Multinodular goitre.
Whilst waiting for the report and advice from my endo, just wondered what I could learn here about it.
No biopsies taken…she said too many nodules!
I am confirmed Hashimotos and just recently (3 weeks ago) started low dose thyroxine due to symptoms. (5 days in, I got covid and felt dreadful so not sure what’s what at the moment)
I do have PoTS, so can be tachycardic at times but have been far more so since covid….not sure if it’s pots or covid effects or thyroxine!
Anyway…I digress! What should I be expecting or requesting regarding the Multinodular thyroid?
Thank you xxxxx
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River123
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Multi nodular goitres are usually small nodules throughout thyroid.
Usually nodules over 1cm are biopsied so it’s likely yours are small. It’s does occur with autoimmune, which as you are positive for Hashimoto’s is the case with you.
Is the thyroid swollen? As under medication will often result in swollen thyroid which will cause the nodules to swell too. Is your Air Way, swallowing or voice affected? often why scans are completed.
Obtain a copy of the scan report there’s often details included not explained in full to you.
Sometimes the nodules can over function but as you have Hashimoto’s and take levo replacement this is unlikely to be the case. I note from your previous posts you had Graves.
Was your Graves diagnosis confirmed with TRab or TSI antibodies testing? otherwise the cause could have been nodules or early stage Hashimoto’s. Did you take antithyroid medication when you were hyper?
Your TSH will be unreliable what are your recent FT4 & FT3. When you test do you arrange draw early in morning, fast overnight & delay dose until after draw?
How much Levo do you take? Do you take any supplements?
Also important to test folate, ferritin, B12 & Vitamin D? These must be optimal of levo wont work well. In range acceptable to doctors - not the same as optimal.
I’ve been on 50mcg (it’s actually accord!! Contains lactose, which may explain upset tummy!!!) for 3 weeks.
Blood test in 3 weeks time.
In answer to questions….
Thyroid is enlarged on right.
I get annoying pressure over throat and food swallowing. This is not why scan was done though..more by my suggestion!! It was done privately.
I definitely feel hyper bursts…along with many hypo symptoms…I can get horrible bouts of hyper feeling that I had with graves.
Yes, graves was confirmed with antibody testing back in 2006. Was treated with PTU for 2 years.
Just not sure if I should be concerned about the nodules…do they need further investigation etc….the radiologist didn’t really give me much!! Just told me to keep an eye on any size changes etc….ugh! She did show me the screen. It was just full of cyst/nodules etc but I don’t know the sizes. Will request the report in a couple of days.
SD, could 3 weeks worth of thyroxine potentially be causing fast heart? As I said, I’m finding it so difficult to unpick if it is my pots (postural orthostatic tachycardia) or covid…which has coincided with me starting thyroxine!
As you tested positive TSI or Trab in past with hyper & now underactive with positive TPO & TG antibodies you have both Hashimoto’s & Graves. Graves can go in remission but does not cure itself.
Even with Definitive Medical treatments,(such as surgery or Radioactive Iodine). The immune system is not treated - doctors opt to remove the victim (the thyroid) but you always have Graves’.
Antibodies fluctuate all the time they are as a result of autoimmune issues not the cause.
TPO & TG are positive with Hashimoto’s which causes Transient hyper & ultimately hypothyroid as immune system attack and destroys thyroid. but they can also be present with Graves.
TSI & Trab is Accepted as evidence of Graves - continuous hyper caused by the immune system stimulating the thyroid. (This can go into remission)
As your are currently under active caused by the autoimmune damage that’s likely to remain the case but with a history of Graves there is always the potential for the thyroid (or what is left of the thyroid) to be “over” stimulated again. As you have less thyroid levels from autoimmune damage it’s very unlikely for high levels to occur, but it may mean fluctuations are possible.
In the past have your thyroid levels altered slowly are quickly?
Once you have report & next set of thyroid function results you will know more.
Thank you for all this info!I haven’t had TSI or Trab antibodies tested for many years….(since initial graves diagnosis in 2006)...only the very high TPO and TG.
I definitely have hypo symptoms (fatigue, cold, slow weight gain) but frustratingly, I suffer episodes of “anxious for no reason, jittery, shaky, palpitations tachycardia “ episodes that feel just like my graves did when it presented.
My thyroid levels remained the same for a very long time following graves treatment. My TSH remained very low (under 1 for years and years….over 10 years) and then about 4 years ago…..(a year or two after my last pregnancy)TSH started to creep up….it took about a year or so to reach 1.0 and then carried on….every time I tested, it crept up a bit more. It’s never been a very big rise….but ever since it went above 1…I’ve noticed slow, insidious symptoms creeping in….
My TsH has only been 4.8 at its highest (with4.4 as the cutoff) and T4 has dropped to 10 at lowest….but normally a little higher. My TSH is about 2.5 now.
So the numbers are not so drastic to look at, but I’ve felt particularly unwell in this past year….
I had the scan today as I have annoying swallowing and enlarged right side…but I was not expecting to hear that it was Multinodular. I wish I had asked the size of them. I asked her if she was going to biopsy any of them and she just said she wouldn’t know where to put the needle as the whole lobe was full of nodules.
Ugh….this thyroid malarkey is very frustrating. I do wonder if I’m ever going to get it sorted.
I worry taking my thyroxine as well when I have the palpitations and tachycardic episodes as I worry I’m overmedicating myself.
If you ever been hyper especially if prolonged your TSH can be particularly unreliable & down regulated.
The TSH may have remain low or suppressed even in thyroid levels are low.
I have a large solitary nodule which was hyper for a very long time. Fortunately not horrendously high but elevated enough to suppress TSH over 4 years before I was put on carbimazole.
My TSH has remained suppressed even though euthyroid for 3 years & kept borderline low for several months.
In technical terns it’s referred to as hypothalamus–pituitary–thyroid (HPT) axis down regulation, but doctors are not really aware of it and if going by TSH alone can keep you very under medicated and unwell.
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