Hi, new to this community and looking for advice/help with my symptoms.

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.

Any advice or help would be greatly appreciated.

Thanks

Jo xxx

[MaryF Administrator]

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.

MaryF x

[Hidden in reply to MaryF]

Hi Mary!! Thanks for getting back to me.

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?

Thanks

Jo xxx

[MaryF Administrator in reply to Hidden]

Some of our members do also have hyper mobility issues, as a separate autoimmune disease.

Please see over on the right of the page a list of Hughes Syndrome/APS specialists in the UK!

I will ask our charity manager why the live link from the charity is no longer live. Thank you for alerting us to this. MaryF x

[Hidden in reply to MaryF]

Hi Mary, no worries about the link.

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

November 2013

TSH: 4.3 (0.2-4.2) Levo increased to 150mcg

FT4: 15.3 (12-22)

December 2013

Anti-DS DNA: 7 (>50)

Anti-Nuclear Abs: Positive

HEp2: Positive (speckled)

TSH: 4.6 (0.2-4.2)

FT4: 15.6 (12-22)

Ferritin: 22 (30-400)

Vitamin D: 43.6 (>75)

Folate: 4.1 (4.6-18.7)

Vitamin B12: 363 (180-900)

Anti-TPO Antibodies: 41,000 (<34)

Plasma Viscosity: 1.64 (1.50-1.72)

Coeliac: Negative

Diabetes: Negative

Thanks

Jo xxx

[Salty in reply to Hidden]

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)

[Hidden in reply to Salty]

Hi Salty, thanks.

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?

Jo xxx

[Salty in reply to Hidden]

The tests are anticardiolipin IgG and IgM, beta 2 glycoprotein IgG and IgM and lupus anticoagulant

[Hidden in reply to Salty]

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?

Jo xxx

[Salty in reply to Hidden]

In the U.S. at least this panel is separate.

[Hidden in reply to Salty]

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

[Hidden]

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

[Hidden]

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.

Thanks

Jo xxx