Earlier in the year I had some investigations on a lump on my neck which has been diagnosed as a multinodular goitre. I was having some hypothyroid symptoms but all my results were within the 'normal' ranges so was discharged back to my GP. I had some low vitamins (tested January) which I have been supplementing which helped to some degree.
Over the last month or so my goitre has been getting bigger and i have been having symptoms again, some indicating potential sleep apnea (morning headaches, increased snoring, daytime fatigue, waking up at night) as well as generally feeling rubbish. I spoke to my GP and he contacted the consultant and I got sent an appointment for the ENT clinic for next April!!!! I have now had a second appointment through for this August at the Otology clinic - I'm a bit confused as I thought otology was ear related. Anyone else been referred to them before?
I was wondering about getting my vitamin and thyroid levels checked again through medichecks, but was now thinking of waiting to see what happens at the August appointment.
I have several cardiology appointments coming up to, as I have some pre-existing conditions, but have been having other symptoms. I do wonder if these could also be thyroid related, so was planning on discussing with my consultant.
Any thoughts on the appointments or if it is worth getting tests now or waiting greatly received.
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Sparklegrrl
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Would strongly recommend getting Full thyroid and vitamin testing privately
Do you actual results from previous “normal “ results?
If not suggest you get hold of them
How low were vitamin levels
What vitamin supplements are you currently taking
Have vitamin levels been retested
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
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Feb 2020 - doctors 9am (had eaten, didn't know I was going to have a blood test)
TSH 2.23 (0.35-5.5)
Free T4 12.9 (10.5-21)
March 2020 - medichecks before 9am no food
TSH 1.86 (0.27-4.2)
Free T3 4.63 (3.1-6.8)
Free thyroxine 15 (12-22)
Thyroglobulin antibodies 11 (<115)
TPA <9 (<34)
Vitamins
Jan 2020 - medichecks
Ferritin 46.2 (13-150)
Folate 11.17 (>3.89)
B12 active 78.6 (>37.5)
Vitamin D 30.6 (50-175)
I'm supplementing Vitamin D with the Better You spray With K2 - I was doing 4 sprays but have reduced to 3 as I'm outside a lot more now. I also take Magnesium from Ignneus, and the Ignneus B Complex that is recommended on here, as well as omega 3.
I was at least thinking of getting my vitamin D tested before my appointment as they are u likely to test that and I was insufficient in it. It's really hard to know how often to test, and can never tell if the doctors are going to be cooperative with agreeing to blood tests.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
In the case of an underactive thyroid (hypothyroidism) with no other symptoms of concern, thyroxine therapy would be given which may, over a period of time, help to slightly reduce the goitre’s size, especially in cases where there is a history of iodine deficiency.
Thanks for the advice. I don't eat meat but I have increased by intake of chocolate/cacao and pumpkin seeds. I make sure I eat plenty of fruit and veg to get vitamin C, and have just started buying fruit juice too.
I have a feeling I'm going to need to push pretty hard to get any answers or anything done. The GPs have been good I'm terms of testing and referring me, but I did feel like I wasn't really being taken seriously at the hospital last time. Hopefully it will be better this time.
I've never heard of otology before but doubt very much if they could do anything about a multinodular goitre.
I take note from previous posts that this affects both sides of goitre so you will probably have no previous neck surgery hopefully.
My multinodular goitre sent my whole metabolism haywire 15 years ago. I had a TT at local town hospital, but when the surgeon saw inside my neck he abandoned the operation and sent me home as he was not experienced enough to continue. It took another SIX MONTHS before I eventually got a second operation with one of the most experienced thyroid surgeons in the UK at a much bigger hospital. He told me the following morning that mine had been by far and away THE most complicated op he had conducted in 15 years. It seems that in the hands of the other surgeon I would have been lucky to survive.
Based upon those events I would strongly advise you NOT to accept any delays as, to put it bluntly, your life may depend upon getting treatment as quickly as possible.
Up to the day of the earlier op I had a part time job delivering free newspapers. Each week, about 100 yards earlier than previous week, my body would suddenly collapse and I had to drag myself onwards. Had to give up eventually when I was in the collapsed position before I even started.
Need I say more? If you have to wait until next April you could be in very serious trouble.
That sounds awful, I hope you are doing better these days.
I have nodules on both sides of my thyroid, but the left side is larger. When I had an ultrasound on it they said they couldn't see anything suspect that would indicate me needing a fine needle biopsy, so currently the extent of investigations is blood tests and the ultrasound.
I'll see what happens at this August appointment at the Otology clinic and if it comes up with nothing I'll have to push. At the moment I'm having 1 (relative) good day and then 2 bad days after.
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