Myxoedema or Cushings???

[Beingamum]

Myxoedema or cushings??Hi. I'm new to here and you all seem very supportive. My daughter is having such a tough time with all over body swelling (almost 5 yrs ago and very sudden gain of 90 lbs) she is also extremely weak and fatigued which comes and goes in cycles leaving her bedridden for weeks. Her face swells up and gets red. She has head and eyebrow hair loss and her skin is very firm. Her tummy gets very swollen under her diaphragm. She is convinced she has cushings but tests are negative. She is type 1 diabetic and also coeliac and has MS (a lot to deal with) hashimotos is closely linked to her conditions. GP will only test TSH which is within normal range. I think she should be having antibodies done. What do you all think? She does appear to have the signs of myxoedema apart from cold intolerance (quite the reverse). Any advice much appreciated

[Butterfly65]

Hello Beingamum

welcome to our forum & Sorry to hear that your daughter is feeling so poorly.

TSH test alone is not enough to rule out hypothyroidism or hashimotos so you are right in saying that your daughter should go back to see her GP & request a TPO ab's test & also ask for T3 & T4 to be tested. Not many GP's will consider testing T3 & T4 unless the TSH is out of range but I was lucky enough to get mine tested on the NHS. Has your daughter had blood tests for vit D, B12, ferritin & folate? If not I would request those too because they can mimic or worsen thyroid symptoms if they're low, always ask for copies of all blood test results and post them on here, with ranges, on a new post so that knowledgeable members can give you advice. Regarding 'Cushings' has your daughter ever taken corticosteroids in the past? You say she suspects cushings but the tests came back normal, what type of test did she have? Cortisol is best tested using 24hr saliva test or urine test, did she have these tests ? Has she had her HCTH blood levels measured ? Your daughter could also consider having private blood tests, many members on here use the labs that are recommended by Thyroid uk & you'll find helpful information on their website.

[Beingamum in reply to Butterfly65]

Hello butterfly65 and that I you so much for the quick reply. Her GP will not do any other tests as her TSH was within normal limits but I will be asking again! Regarding Cushings she has had several 24hr urines and a Dex suppression test done (she suppressed). We have been to see a private endo who suggested 30 day salivas but that test was refused on NHS and we are challenging this with our MP at the moment. What is the HCTH test?

The main problem is the swelling and exhaustion (she can lose a whole day sleeping!)

Thanks so much for the advice and support its much appreciated and NEEDED 😳😫 lol x

[Butterfly65 in reply to Beingamum]

Hi Beingamum HCTH blood level tests help diagnose Cushings & related conditions urmc.rochester.edu/encyclop...

Here is another link for private blood tests thyroiduk.org.uk/tuk/testin...

[Beingamum]

Thank you 👍😊

[Butterfly65]

I'm suffering with similar symptoms to your daughter ie; swelling & extreme fatigue but would guess to a lesser degree than your daughter is at the moment.

I too have lost countless days sleeping but since joining this forum at the beginning of the year I've been given some sensible advice by some knowledgeable members & just by supplementing vitamins such as vit D3 & B12methycoblomine, iron, folate & vitamin C I find I'm not sleeping quite as much as I was. I'm undiagnosed & my TSH was within range & I'm waiting for an appointment to see an endo. Good that you're challenging their decision & I hope you have luck with your MP involved. If you have any recent blood tests results you could post them using a new post & ask members for their feedback it's important to include lab ranges too.

[Beingamum in reply to Butterfly65]

Thank you 😊 I have requested results which was met with a ooookkkaaaayyy lol. Hopefully get them today but I know for certain she has only ever had TSH done which was in November x

[LtAngua52]

Hi. I'm so sorry your daughter is going through all this. Most people don't feel well unless their tsh is 1 or under, even suppressed with the t3 & t4 at the top or above range. If the t3/4 is not tested you really can't say how well or not your thyroid is functioning. Unfortunately doctors don't understand the thyroid well at all. . T3 is the active hormone so if you don't know if you have enough how can the doctor say your thyroid is ok? Answer, he can't! You could email Louise Warvill on [e-mail] and ask for a copy of the pulse article to give to your Gp. Question 6 is about dosing showing the importance of t3/4. Most of us end up getting private tests done.

My GP thought I may have MS, but it turned out to be vitamin b12 deficiency which is a common misdiagnosis. Along with a lack of vitamin d. She needs to have a full thyroid profile with the t3/4, antibodies, folate, ferritin, vitamin b12 and D. Deficiencies in these also inhibit thyroid function.

I hope she manages to sort things out, but in my experience, and for many on here, you have to take control of your own health because doctors have poor knowledge about the thyroid and thyroid tests. I wish you and your daughter luck. If you want private tests then go on to the thyroid uk website and scroll down to the thyroid tests area and then on private tests. I used blue horizon medical and thyroid uk receive a small donation. Hopefully, your GP can be persuaded, but if not this is an option.

[Beingamum in reply to LtAngua52]

Thank you so much for replying x

[greygoose]

Hi Beingamum, it is pointless arguing with doctors. They are pig-headed and obstinate with no understanding of thyroid. You would be much better off getting your blood tests done privately and posting your results on here.

You need :

TSH

FT4

FT3

TPOab

TgAB

vit d

vit B12

folate

ferritin.

That is a minimum, but the NHS will usually only do about three or four of these. The AB (antibody) tests will tell you if she has Hashimoto's.

What was her TSH reading? The range is so vast, it isn't all 'normal'. If her TSH was 2, then her thyroid is struggling, if it was 3 then she is hypo, but the NHS will not admit it until the TSH reaches 10.

For adrenals, you stand very little chance of getting tested. There is absolutely no understanding of adrenals in the NHS. What you need is a 24 hour saliva cortisol test. Private, of course. Does she have the purple stretch marks on her stomach that come with Cushings? What sort of tests did they do for that?

[Jose651 in reply to greygoose]

Talking about purple stretch marks, I just noticed tiny ones on mt tummy but longer ones on my hips a few weeks ago,

My saliva tests came back quite high in 3 out of 4 of the readings.

More problems gg

J 😔

[Beingamum]

Hi greygoose. I have taken a note and will get these tests done privately. I have asked GP for all her test results and ranges she didn't seem too keen but hopefully they will be there to collect today. She has gone as far as ordering t3 from Mexico for a trial but I am cautious of that. She does have stretch marks and a 'hump' between her shoulders but 24hr urines and Dex test are negative. We are fighting to get salivas done. It's just there is a niggling doubt in me that says hashimotos! She thinks her TSH was 2.7 in November but GP refuses to do antibody tests 😟 So sick of fighting with them so private it is x