I have a doctors app booked for this week but at the weekend my sister noticed my face was swollen. She also agreed my clavicle area was too (I’ve previously posted a pic here). She took some pics for me which I’ll post and you can really see the difference from when it’s swollen vs not! She said it felt more like water retention as it was spongy.
I’m trying to track this as it’s intermittent, the clavicle area has been swollen on/off for 6 months maybe but the chin/neck/face I think is possible since starting Levothyroxine.
Could it be a side effect? I don’t notice it linking with when I take medication. Is this possibly just part of Hashimoto’s causing a puffy face?
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katyy94x
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Yup! When I was first diagnosed my doctor was half at across the room and said, you have a goiter on your left side.
I was shocked. Stared in the mirror for so long trying to figure out how he did it.
But just like your pictures. The thyroid is right in that Adam’s Apple / neck area and as hashis does its job, it damages it and swells and nodules and goiters grow.
What a lovely disease lol!
The above is my experience, the words might be wrong, but you get the idea : )
I always thought a goiter would be hard! It’s all very soft and squishy. I didn’t realise they come and go either. Horrid when it swells up I literally feel like I’m choking from it!!
I don’t know the right words to describe the physical manifestations of my hypo : ) But I can say since Aug 2022 when I was told I had something-or-other on my left side I had tried to look and poke and figure out where it is under my skin… can’t for the life of me. To be honest, I can’t even remember if it’s on MY left or the DOCTORS left lol and that guy saw it across the room ! Come to think of it, I can’t remember what side it is on : /
That being said - have you had an ultrasound ?
Again- from experience, not deep knowledge, but they US these things to see how big they are and where they sit. I think 2 cm is some threshold under which they don’t do anything. From memory mine was like 1.99 or something. I get an US every year now.
Further - if you feel like you are choking - then I think that is also something the US will show - if it’s interfering with your throat’s function.
Others will likely come along here and weigh in - I just know what my experience is but haven’t read up on it at all.
Lastly - based on your profile, looks like you are 50 mcgs Levo - when did you start it?
Once through your 6-8 weeks, you will likely need the increase your dr mentioned. But your Free Ts didn’t start out as horrible…. BUT- also - all your key vitamins are very low. Have you gotten input yet on your low folate, b13, d and ferritin?
You were started on 25mcg levothyroxine …..that’s only half the standard STARTER dose
You will now be more hypothyroid that before starting on levothyroxine
Get bloods retested 6-8 weeks after each dose increase
Make sure you test early morning, ideally before 9am, only drinking water between waking and test ….and essential last dose Levo 24 hours before test
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
You were started on 25mcg levothyroxine …..that’s only half the standard STARTER dose
You will now be more hypothyroid that before starting on levothyroxine
Do you mind explaining this a bit more? I know you've said before it isn't topping up, it's replacement, but why would this make you more hypo initially?
Thanks to all of your support I have now had a referral to an Endocrinologist by my GP, so hopefully they will be able to answer these questions going forward. I have a GP app this week about the swelling in the pics, it's very intermittent (except the clavicle) and not hard which i always expected a goitre to be. I am on teva and i know you said that can cause issues so i will request a different brand.
I know you've said before it isn't topping up, it's replacement, but why would this make you more hypo initially?
As soon as we start on levothyroxine, pituitary will “see” the Ft4 in levothyroxine and TSH will reduce
TSH is the message from pituitary asking thyroid to make Ft4 and Ft3
So you start taking a low dose Ft4 …..TSH reduces, then your own thyroid reduces how much Ft4 and Ft3 it’s making……so you end up with lower dose Ft4 overall
Feedback mechanism means almost everyone will end up on full replacement dose eventually
Get bloods tested and push for next increase to 50mcg
Retest again in another 6-8 weeks
Likely to need several further increases over coming months
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