I have a checkup of my multinodular goitre at the end of Feb 2023 and I would like some advice please on what to be asking when I’m there.
When it was identified almost two years ago I went on the 2ww . Thankfully it wasn’t cancer but I was so worried I didn’t ask many questions.
Further info/Background
I still have many unexplained ill health symptoms which my GP had concluded is carers burnout and stress. My GP said if my thyroid was unwell he would expect high numbers in my blood tests.
My blood test results are within nhs normal range, latest are…
TSH is low 0.32-0.5 (range 0.35-5.5)
Ft4 is at lower end of range FT4: 14.4 pmol/l (Range 10.5 - 21) Ft4 37.14% through range
FT3: 5 pmol/l (Range 3.5 - 6.5) 50.00% through range
Iron, vitD, Bvits are low. I have regular nhs iron infusions (cannot tolerate tabs, I’ve tried them all), I’m taking vitD, B complex, magnesium and K2-MK7 daily. (All vits were recommended here.)
Digestive system fully checked with colposcopies last autumn (to look into why my iron is consistently so low). No issues identified.
I pushed the GP for a cortisol blood test because TSH is low, which he agreed to do. (I’m dead in the afternoon and wide awake at 10pm.) Currently waiting for cortisol saliva test results that I arranged.
I’m taking amitriptyline for the insomnia, by far my worst symptom. It is helping me sleep 12-7 but has had no effect on my fatigue, brain fog, cognition, aches, digestive issues, cold, jittery and other symptoms. Now I’m groggy in the mornings too!
I may look at financing a private consult with an endocrinologist in the near future to put my mind at rest. I don’t feel very confident in the GPs I’m seeing.
Is there anything I should be asking please about the multinodular goitre?
Thank you for all your advice!
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Insomania
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I have a large solitary nodule, the concern with nodule\s once confirmed benign is that they autonomously function.
This causes above range FT4 & FT3 and low TSH. - Has dr ever investigated why TSH is low with in range / low FT4 & FT3.
Have other pituitary hormones been tested or scan of pituitary?
I was trying to read your previous post, have your TPOab (Thyroid Peroxidase antibodies) & TGab (Thyroglobulin antibodies) been negative? Sorry I could read it.
An ultrasound of thyroid doesn’t determine function, so the scan looks at the health and the doctors relies on blood test to decide on function. - So ENT are looking at physical issues from a “does this need surgery” viewpoint. They may not be considering blood test results and assume GP / other specialists are dealing with.
Very poor nutrients can lower TSH when normally it would be high reflecting low levels, so improving would be ideal but you have a difficulty with this.
Have you had gluten allergy tested? If negative may still be worth trialling strictly gluten free as you mention gastric issues & may have an absorption issue causing poor nutrients, it may be undetectable and only way is to trial.
I’m doing much better on the daily vitamins now I’ve got the B complex sorted.
No pituitary function has been looked at. GP has referred me for a cortisol blood test. I did the saliva test last week.
No investigations as such. GPs have repeated the bloods a lot but keep saying it’s all normal. I can’t be referred to a socialist because I don’t meet criteria.
A haematology consultant was surprised I didn’t have a care plan for the enlarged thyroid, e.g. 12 monthly scans. Do you have a care plan?
The long story is, I was finally referred for a scan by a nurse, when I took a bottle of water to my appointment and said look at my neck when drinking - the swelling was then noticeable. Two previous doctors said neck look fine.
During scan they said I had a 5cm nodule and would do a fine needle aspiration there & then, it came back clear. I was discharged, but no-one noticed the blood test Id had done wasn’t processed.
Months later still an issue GP arranged function & another scan. This is when the high levels were found and carbimolze started.
They did re scan but said was now up to endocrine department.
I had 2 other neck scans for a swollen salivary gland both the radiologist & ENT specialist said, the endocrinology department watching your nodule right? & I’d reply - No not really, not since FNA years before. I take carbimazole but I’ve been discharged to GP for monitoring. So they say it must be fine then and not their department. The edge of nodule and swollen gland was about 3cm apart but they are only interested in looking at their little fragment.
I have had a multi- nodular thyroid since 1986. I had a sub-total thyroidectomy as it was eventually the size of 2 fists but functioning normally. The pesky gland grew back . A low normal TSH is good as my Endo says it is better as it is less likely to eventually become cancerous. However I never had any of the symptoms you are experiencing in the 37 years I have had nodules.I hope you can find a solution and can get to see an endocronologist to at least have a FNA and to rule out the thyroid for your symptoms.
Hi I had a multinodular goitre removed several years ago - I had put off addressing it for years. When removed it was discovered to have grown into my chest - not discovered with MRI just on neck. I had similar symptoms to you and a couple of years later despite meds and multi vits, almost collapsed as tiredness had gown exponentially. Discovered I had sleep apnoea exacerbated by the growths (all now removed). Now have CPAP machine and love it - energy rebounded and libido (absent for 10 years) came back with a thump. So do check that they look at the whole of your goitre - if in chest they have very small tendrils going under chest bones and balloon sacs on end. Sleep apnoea can be discovered with oxygen levels - often not checked. Hope this helps with questions.
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