I was diagnosed hypothyroid in May last year and my first appointment with the Endo was today. She confirmed I had Hashimoto's and also suspects Addison's.
The reasons she suspects I have Addison’s are:
* I have lost weight despite eating a lot of food. I have gone from 50kg or 8 stone to 48.6kg or 7 stone 9 pounds.
* I have had 1 blackout.
* I still feel tired and lacking energy despite my TSH being within normal range.
* She has noticed I have hyperpigmentation on my back and legs.
* I get recurring headaches and migraines.
* I get pain in the backs of my eyes.
* I have had high Anti-Nuclear Antibodies but I’m not sure which ones they are. All I know is that they were done on a HEP2 and were speckled.
Other symptoms I get:
* I have had 2 high plasma viscosity readings.
* I get dragging/pulling sensations in my lower jaw.
* I get muscle twitches in my face and cramps in my legs which get worse when my feet are massaged.
* I get irritable although I’m a friendly person.
* I am constipated although I’m pretty much attributing this to my hypothyroidism.
My Endo wants me to undergo an ACTH test within the next week or so to check my adrenal function – is this a routine test for this illness? And is Addison’s linked to Hughes?
I can post all latest blood test results if anyone wants me to.
Hi you mentioned over on TUK, that your consultant mentioned APS. This is what we can help you with on here, and yes some with Hughes Syndrome/APS also have thyroid/adrenal issues and also Sjogrens and it is vital that your doctor or Rheumatologist helps you get to the bottom of test results, you do need to make sure your thyroid problems are dealt with, and a speckled result usually means mixed connective tissue disease, it sounds like they are really looking in to things. Where are you located, as other members more local to yourself may have further knowledge.
The test run by your endocrinologist will most likely be thyroid and adrenal related, and if you look around the charity website I sent you on TUK, you can see the associated conditions. However also on the site are the blood tests required to determine APS/Hughes Syndrome.
I'm located in Bristol and on the NHS. Would this development in my diagnosis be worth mentioning to my lifestyle therapist? She is a TUK support group leader.
Thanks for the link to the Hughes site but the one on the site linking to the online community didn't work, which was why I've come on here! I'll access the online community again once its link has been fixed.
With mixed connective tissue disease, I don't think I've got anything like scleroderma but I do have hypermobile joints. Is this anything to do with Hughes?
I've looked at the website very thoroughly and some of the symptoms I've listed are ones that I have (which I didn't think would have anything to do with Hughes)
- Raynaud's Phenomenon
- Splinter Haemorrhage in nails (one of which I've noticed this morning)
- Livedo Reticularis (I remember seeing a blue/purple mottling on my legs and arms when I was younger but I always attributed that to my youth. I still get this on and off)
With the colouration at my back it's more brown - which made my Endo think it's Addison's.
Blood tests I've decided to post anyway:
November 2011
TSH: 5.2 (0.2-4.2)
FT4: 16.8 (12-22)
January 2012
TSH: 2.2 (0.2-4.2)
September 2012
Ferritin: 29 (30-400)
Plasma Viscosity: 1.8 (1.50-1.72)
January 2013
TSH: 0.69 (0.2-4.2)
Anti-TPO Antibodies: 84,000 (<34)
May 2013
TSH: 22 (0.2-4.2) Started on Levo at 25, then 50 and then 75
FT4: 10.9 (12-22)
Plasma Viscosity: 1.9 (1.50-1.72)
August 2013
TSH: 4 (0.27-4.2) Levo increased to 125mcg
Ferritin: 15 (30-400) - Started on Ferrous Fumerate but I switched to Spatone
It doesn't seem that you have been tested for APS (Hughes), but it would be a good idea if you do with livedo, raynauds and splinter hemorrhages as well as your other autoimmune issues (which puts you at higher risk)
Is that test done with testing for antiphospholoid antibodies? I was tested with an autoimmune profile and there was no mention of this particular antibody. So I presume I was not tested for it?
Thanks for this info. I might look into getting this privately as 2 GPs I've been seeing don't make me feel as though I can suggest such things with them.
The only antibodies I've been tested for are:
HEp2
Anti-DS-DNA
Anti-Nuclear Antibodies
Anti-Smooth Muscle Antibodies
Anti-Parietal Antibodies
Anti-Mitochondrial Antibodies
Anti-LKM Antibodies.
So none of these ones I've had done are relevant? Why did the GP not test for these themselves if the ones in your reply are also part of an autoimmune profile?
Ok thanks for this. I'm wondering if anyone has had these done on the NHS. Seems daft if these were readily available on an ELISA or Autoimmune profile since my results have told me none of these ones mentioned were present.
Jo xxx
Hi Lynn
I thought the full thyroid profile had been done on December.
Anti-TPO was done along with FT4 and TSH. FT3 was done the month before - privately - so I had to fork out money for it - and was normal at 5.5 (3.1-6.8).
Vitamin D has been supplemented with Fultium 800IU but I was told by my lifestyle therapist that this is not enough. So I have ordered a Better You D Lux spray at 3000IU.
Thanks
Jo xxx
Ok Lynn, thanks for your reply.
I've just come back from the GP who has signed me off for 2 weeks as I'm just so tired and getting headaches all the time.
But I do have an appointment with another GP next week so I could ask for her to test me for the abovementioned as Salty has suggested.
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Thanks for getting back to me.
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