Im sorry if this has been brought up many times before- I did not find a specific post just addressing this so hope someone can help. I have hashimotos and am on 50mcg of euthryrox (same as levo as far as inunderstand). Im being medicated by my endo in Czech rep as nhs not interested.
Ive got fatigue under control, attempts at weight loss are still going, hair loss quite bad and skin is just shite. But my biggest insecurity is my moon face. I weigh 61kg (at heaviest in pregnancy i was 67ish i think and i did NOT look like this) and my face is just ridiculous. I notice it does get better at times but overall it’s terrible - i refuse to get in pics etc. Is this connected to things like gluten or is a matter of being undermedicated or both? I have also noticed more severe pms symptoms, which i never had even in the slightest for 30yrs before my thyroid went haywire.
I plan to go to swissmedical or see if they can do a consult at least over the phone but would feel better seeing someone in person! Have also noticed a pulling type sensation in the thyroid area but cant make a connection to food/stress or anything else. It just happens 1 or 2x a day for a few mins and disappears again
Sorry for the long post
Just looking for advice and some hope. I barely recognise myself
Thanks so much
Stay safe
Written by
Ivanab
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Moon face is a sign of either hypo or low cortisol.
How long have you been on 50 mcg levo (we tend to call all T4 products levo, because that's the active ingredient: levothyroxine/T4)? That is just a starter dose, so you're probably very under-medicated.
Do you have a copy of your last blood test results - with ranges? If so, post them here.
Sorry moon face is the sign of high cortisol not low, this can be due to being on too much steroids or Cushing's symptoms. Low cortisol on the whole causes weight loss rather than gain.
A moon face is just a description of facial swelling/oedema, it can be due to being overweight, or from high levels of cortisol. I hadn't heard it was due to hypothyroidism, but could well be. There are lots of reasons why a face might be fuller than normal.
my face was very full before i was treated even then the levo didnt work and only NDT Thiroyd brought it back to normal and i lost weight. its very upsetting so i can well understand how you feel Ivanub - hope you can get it sorted soon but it takes time. im sure you will get the help you need on this forum
The have forced many to try to source their own NDT and one of TUK's Advisers (now deceased) did not get a response to the following Rebuttal, to the BTA eta l despite three yearly reminders befor his untimely death.
I do not understand how people who are supposed to be 'educated' in how thyroid hormones work, do not understand at all how necessary they are in restoring patients' health.
We used to have the options of NDTs, T3 added to T4 or T3 alone. Now we are restricted to levothyroxine alone. They have also been the cause of immense worry and search for life-giving hormones - regardless of the stress etc.
As these professionals earn reasonable money, if they or their family members develope a dysfunctional thyroid gland they can afford to pay for these options, denied to those some of whom have probably lost their jobs or find it impossible to do what they used to.
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my moon face has been a staple symptom of Hashis/hypothyroidism, in fact all my friends have it too when undermedicated. When had high cortisol 3 years ago, my face was skinny, seems everyone is different. I didn't have cushings though, it was from a rapid decrease of all NDT I was on and then rapid indrease of the full dose.
What other symptoms do you have? Do you bruise easily, have trouble sleeping or waking up during the night? Do you have high blood pressure, is your weight gain mostly around your tummy? It might be worth asking your doctor to test your cortisol levels, ideally it needs to be done first thing in the morning, however it can be at normal levels in the morning but stay at that level throughout the day so being too high at night. You can do saliva tests to see if your cortisol is high.
Hi Pauline thanks! I joined the cushings group - I think we have been communicating via messenger. I am yet to introduce myself in the group - think i will try and summarise my essay below. thanks
Hi there - sorry to hear that you have this problem - I am on steroids for life and when on 200 mg after Sepsis I was unrecognisable. Whilst moon face can be as a result of a Cushings problem - this would be coming from the adrenal gland itself.
There could be another reason - your pituitary gland is trying to get the adrenals to 'up their game' to support the extra uptake in metabolism - so is pumping out more of the hormone needed to help - this will obviously raise your cortisol levels.
Stress can also do this - but stress takes many forms as I know with Addison's - it can be hot weather - cold weather - worry or illness - anything that puts a strain on the body is a stressor and puts a stress on the adrenal gland itself - don't forget that when taking thyroid hormone for the first time - the body will be under stress as it needs to regulate all that is needed by the adrenals to cope.
The pituitary gland is a tiny organ at the base of your brain that controls the secretion of various hormones. Issues with the pituitary gland can cause it to under- or over-produce hormones, including adrenocorticotropic hormone. This is the hormone that triggers the adrenal glands to release cortisol.
Circulating estrogen can increase cortisol levels in your blood. This can be caused by estrogen therapy and pregnancy. A high circulating concentration of estrogen is the most common cause of high cortisol levels in women.
When I first took thyroid hormone - a low dose - I had a very disconcerting rushing at the back of my nose - as the pituitary is based at the back of the nose within the brain stem - I actually felt mine trying its hardest to help me with more adrenal hormones to support the uptake - down the line I realised why - later on it was confirmed my adrenal gland production of cortisol was low. It never ceases to amaze me how wonderful the human body is.
If you post your results members on here can see what is going on - but hope this helps.
Hi Marin no never had steroids - but i do know that it's a well known side effect. thanks for replying
Hey Ivana, it seems that everyone has a different experience.
My moon face is due to hypothyroidism, 100%. Also, had high cortisol in the past and my face was skinny.
If I were you, I would check bloods, tsh ft4 ft3 to see where you are. You can also check cortisol, but since you arr diagnosed hypo, this would be the first one to check.
Hi all thanks for all your replies, advice and words of encouragement . I am sorry it took me so long to reply- it seems I have done my lockdown declutter so efficiently that I struggled to find my medical paperwork.
I was started on 25mcg in June 2018. raised to 50 in may 2019 and havent been tested since. When i first started having symptoms- they were mainly neurological - i was convinced i had ms. Tingling of all limbs, brain fog, severe fatigue, hair loss and weight gain. It was the hair loss and weight gain that made me think of the thyroid and i got blue horizon test to confirm high antibodies but 1. something TSH (unfortunately didnt know at the time that I shoukld have had the blood drawn first thing so the results were def skewed). As far as I dont have very good experiences with GPs and the NHs in general, I will mention that I was referred to a neruologist because my symptoms seemed to have come out of nowhere and were mainly neurological. I got an MRI which was clear..
I suffered a miscarriage at about 8 weeks in December 2016 but unsure if this was thyroid related or not. We would like to have another child hopefully in the near future (endo in CZ did mention that the thyroid is vital which again I was completely unaware of before as have 3 healthy kids and had great pregnancies. However when i called her out on quite a high TSH in terms of getting pregnant, she dismissed it - see below)
I look back at pics and the facial thing is def evident- but it's not proportional to the weight gain which compared to my fittest just before sh%t hit the fan is about 8ish kg (now a 5kg difference between fittest and current situation) I should probably mention that I think my thyroid was triggered by overexercise (I do have a genetic predisposition which is something I found out only after the fact) .
I dont have high blood pressure, high cholesterol, easy bruising, stretch marks etc. I have been pretty militant about my sleep routine and I sleep very well atm. Stress is probably a bit high as have 3 young kids and like everyone else, we are off school and OH working from home. He has recently lost his brother so more stress but again the 'moon face' has been there ever since the thyroid thing started, when i look back at pics. I have also had feedback from OH and kids that my behaviour is a bit erratic and I go 0 to 100 often. I dont have experience with depression incl post partum.
My skin (and hair) has considerably worsened- have developed rosacea which is mild-ish at the moment and again something that I have inherited from my mom.
I should also mention that I have very little to 0 Libido :(.
I carry weight in the midsection but I wouldnt say it's different to when I gained weight in college- I tend to be prone to love handles and a bit of thigh fat. Have always had slim-ish legs but now I can notice weight gain kind of everywhere incl arms and a ridiculous amount of cellulite, which i am not sure is because of inflammation, water retention, estrogen or? This is something I have noticed as PMS symptoms seem to have cropped up. The only place that I havent gained weight is my sorry looking chest area (lol)
As soon I self diagnosed I went cold turkey and tried the Autoimmune protocol for 9 weeks. I reintroduced foods and didnt feel any drastic changes but it did def damage my otherwise excellent relationship with food. This is why I had a question re gluten/diary as I feel restriction is a problem for me but if I were to eliminate these, I would approach it differently than in 2018. For instance try the whole30 which seems a bit less 'drastic' than AIP.
My results are as follows: The endo I have is nice and thourough but I am a very uninteresting case to her as she deals with really complex cases incl all sorts of tumours etc. I wish she was a bit more open minded but I am just glad she took me on as NHS in watford first refused to see me altogether - hopefully I am allowed to quote the letter:
'From my perspective, anti thyroid globulin antibodies only have significance in the context of the measurement of thyroglobulin. Thyroglobulin levels should only be checked post a definitive treatment of thyroid cancer which is not relevant here at all. They can be associated with hypothyroidism but we do not measure them for this and will be found in 10-20% of the healthy population. I am a little perplexed therefore as to why they were requested but do not think that the result will be significant. I am not arranging any furhter follow up.'
and then a locum discharged me based on a conversation with no ultrasound, blood tests etc, posting a letter that I am euthyroid and dont need to be seen. I had 2 ultrasounds whenever I saw my endo back home in the Czech rep and she confirmed Hashimotos but no nodules etc. I can try and translate the report if anyone would understand it- all very medical terms but there are measurements showing thyroid damage etc.
Anyway:
Tests blue horizon - January 2018:
CRP 0.6 (<5)
Ferritin 26.7 (13-150)
TSH 1.46 (0.27 - 4.2) ( as mentioned above this blood draw was in the afternoon so not accurate)
t4 total 101 (66-181)
Free t4 15.6 (12-22)
Free t3 4.72(3.1-6.8)
anti-TPO 16.9 (<34)
anti_TGa 447 (>115)
Vit D 124
Vit B12 349
Serum Folate 39.5 (8.83-60.8
Cortisol :
waking 13.4 (6-21)
12:00 3.32 (1.5-7.6)
14:00 3.24 (0-5.5)
16:00 2.47 (0-5.5)
18:00 3.62 (0-4.5)
Before bed: 2.93 (0-2)
March 2018 (pushed GP to test thyroid with no action however did come across another gp weeks after who eventually made the referral to endocrinology- see dismissive letter above)
TSH 4.82 ( (0.35-5.5)
free t4 14.3 (10-19.8)
June 2018 ( endo in CZ, had ultrasound + started on 25mcg based on this:
TSH 3.128
ft4 10.08 (9.01-19.05)
anti TPO <0.500 (0.000-5.610)
anti TGL 23.380 (0-12,000)
TRAK 0.100 (0.00-0.55)
August 2018 (endo CZ)
TSH 2.169 (0.380-3.500)
ft4: 12.44 (9.01-19.05)
May 2019 (endo CZ, had ultrasound + raised to 50mcg based on this:
TSH 3.526 (0.380-3.500)
ft4: 9.39 (9.01-19.05)
August 2019 ( i ordered these tests myself while I was home as my hair kept falling out + weight gain was not shifting)
Iron 12.3 (9.0- 30.4)
Ferritin 7.1 (4.6-204)
Vit b12 321 (138-652)
TSH 3.294 (0.38- 3.) - did call her out on the TSH esp because I am being medicated but she said it was fine. Mentioned the libido problem which was surely but slowly getting worse and she said it was psychological).
free t4 10.63 (9.01-19.05)
Thank you if you managed to get here- hopefully I am making sense.
I will also ask for any experiences with Swiss medical? seems to be the best rated - I am in Herts. Probably will only have a phone consult but waiting for an email to see what they say,. I realise it cant be discussed publicly so any recommendations on endos welcome in my inbox
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