Newbie

[Ekaterina9855]

Hi

I have an ingrowing substernal goitre, it's growing down into my chest. I had an x ray done in 2016 which showed the ribs on my right side are covered by the goitre will I likely need an operation? I have other symptoms such as bladder infections, constipation, heavy periods, hair loss, puffy eyes, difficulty swallowing, feeling cold, tiredness, weight gain. Diagnosed 2012 and taking 200mcg Levo though my conversion was better on 75mcg Levo and 10mcg T3. Thanks

TSH 2.20 (0.2 - 4.2)

FREE T4 16.8 (12 - 22)

FREE T3 3.4 (3.1 - 6.8)

[Clutter]

Welcome to the forum, Ekaterina9855.

Substernal goitre growing down into the chest usually requires surgery to remove the thyroid and goitre. Were you not referred to an endocrinologist or thyroid surgeon? Difficulty swallowing is probably due to the goitre.

You are a little undermedicated to have TSH 2.2 on 200mcg Levothyroxine. There is scope to increase dose to raise FT4 and FT3 but conversion doesn't look great so you might be better with some T3 added to your current dose. Constipation and weight gain may be due to undermedication.

Hypothyroid patients are prone to having low/deficient ferritin, vitamin D, B12 and folate. Ask your GP to check these because heavy periods and hair loss may be due to ferritin/iron deficiency.

[Ekaterina9855 in reply to Clutter]

I am under an endo yes and he has said nothing thanks

[Clutter in reply to Ekaterina9855]

Ekaterina9855,

You need to ask your endo to increase dose. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your end.

You should also ask why you've not been referred for thyroidectomy and substernal goitre removal.

[SlowDragon Administrator]

Your TSH is too high and symptoms are hypo

Why was T3 stopped. Do you have test results from then?

Highly likely to have low vitamin levels now as result

Do you have raised antibodies (Hashimoto's) if so are you strictly gluten free?

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

[Ekaterina9855 in reply to SlowDragon]

Test results on T3/Levo combi

TSH <0.02 (0.2 - 4.2)

Free T4 20.8 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

On 75mcg Levo/10mcg T3

Stopped because of above results

[SlowDragon Administrator in reply to Ekaterina9855]

which were about perfect. T3 pretty much always suppresses TSH

But on T3 we need to supplement like mad to keep vitamins up.

Ferritin half way in range minimum (likely low with heavy periods)

B12 at top of range

Vitamin D around 100nmol

If you have Hashimoto's (very likely) majority need stick absolutely to gluten free diet too

[Fio1331]

I'm surprised they haven't at least discussed surgery with you. As soon as my substernal goitre was discovered it was a case of 'Right, that has to go' because it does cause other problems with things like swallowing, or in my case I had a persistent cough and gastric problems because everything was getting squashed. I'd certainly ask your GP or endo whether this is appropriate for you. For the record I recovered well and pretty quickly from the surgery.

[cpickens in reply to Fio1331]

How long has it been since you had your surgery? No other problems since? I am suffering with a goiter on my rt side and believe it's gone downwards because I can feel it and it affects my digestion. Really don't want to remove thyroid but worried if I don't what could happen.

[Fio1331 in reply to cpickens]

It's been about 18 months, and the internal issues did improve. Luckily I seem to do well on levo, so it's all worked out OK for me.

But ultimately the decision on surgery would need to be made when you've had scans and discussed it with a consultant, weighing up the pros and cons. Depends on the extent and where exactly it is. I hope you can come up with a satisfactory way forward.