Update. Hashimoto's confirmed but Endo thinks I could have Addison's as well. Does this make any sense?

I have had my first Endo appointment today and she did a physical examination on me.

Blood pressure - She noted my blood pressure was very low when lying down and the diastolic reading was higher upon standing than lying down. She also said she couldn't detect my heartbeat very well with a manual blood pressure monitor which did concern me although this could have something to do with the efficacy of a manual one.

Weight loss - She has said my weight loss isn't dramatic as in me going down 3 dress sizes but the fact that I do eat a lot and lose some weight hints at adrenal issues.

Skin hyperpigmentation - She has noticed some brown patches of skin on my back and legs and when she asked me if I knew about these I said no but the only dark patch I was aware of was on my right upper arm.

Blackouts - I did black out once before but it wasn't a *complete* blackout. What I mean by that (and I explained to her too) that I felt my thoughts cut out and my vision went hazy. I also came over tired. This only lasted 4 or 5 seconds but it was enough for me to notice.

So now I am to undergo an ACTH stimulation test as my symptoms seem to be pointing to Addison's. The Endo has said there is a link between Hashimoto's and other autoimmune illnesses and it would explain my symptoms.

My ACTH test is going to be booked quite urgently so they're looking at a week or 2 for me to have this done. I've heard that Hashimoto's and Addison's are linked to something called Autoimmune Polyendocrine Syndrome Type 2 (APS Type 2) but i've read that I would need to have:

Hashimoto's

Addison's Disease

Diabetes

And less frequently hypogonadism and vitiligo.

Well, out of the 3 I have Hashimoto's confirmed, Addison's Disease suspected and Diabetes ruled out with the HbA1c test.

Hypogonadism, I don't know about that although my breasts are very small for my age (they are a 32A, so nothing to brag about...:( ) and my periods are always heavy, painful, early, late, short and with dark blood. Plus I have lanugo hair on my lower arms and have excess hair on my thighs/bikini line, upper lip and chin (which I am always shaving off) I'm wondering if this might be something. Polycystic overies have been ruled out through ultrasound.

And vitiligo, I'm not very sure of as I do have white spots on my arms but these have not gotten any bigger, unilateral and aren't patches.

So now I'm stuck. Any advice would be greatly appreciated.

Thanks

Jo xxx

22 Replies

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  • Hi if they suspect APS (Antiphospholipid Syndrome), otherwise known as Hughes Syndrome, there is a forum on this platform for that. Many people with APS have thyroid problems/adrenal issues, and other autoimmune diseases such as Sjogrens. Also a charity website: hughes-syndrome.org This lists symptoms and associated disorders, please some back to me if you need any further info.. lots of people on that forum are also on this one due to good support and advice! MaryF x

  • Hi Mary thanks.

    I've googled Hughes Syndrome too and I don't mean to be technical (I'm not technical at all!) it mentions that specific positive Anti-Nuclear Antibodies would make a more definitive diagnosis. Well, I do have positive Anti-Nuclear Antibodies - HEP2 with a speckled stain - but I don't know whether these are fine or coarse. And I don't even know if the ones I have are present in Hughes Syndrome!

    I think I may have Sjogrens as I get dry mouth and dry eyes and I have had sticky blood from past plasma viscosity results so I'll have a look at this site! :)

    Jo xxx

  • You will see it under 'related conditions' and also a live link to a forum similar to this. MaryF x

  • Ok. Will take a look now.

    Thanks!!

    Jo xxx

  • One my Endo visit I had blood taken to test for APS2 and I didn't get an actual result for that so assumed it must be ok. Also had never heard of it so a bit in the dark. I asked for a FT3 and told no, waste of time! When I got my results in form of a letter I'd a FT 3 result but no range! One my next visit I said about the FT3 result and why as he said he wouldn't do it he denied he'd ever said that but would only give me the upper level of the range. I complained to PRactise Manager as GP didn't get anymore info so doc asked from lab and found FT4 result as well! I've since posted these and got suggestions that may be not converting or may be hyper -TSH suppressed-always has been on results I've seen but no hyper symptoms. Being a physiology technician when working I'd copied everything down from the lab request. I assumed lab did fuller profile as TSH suppressed but could it be because of anything in APS2 test? Just wondering if I should have looked further into that.

  • If you were tested for APS/Hughes Syndrome, you certainly do need to ask for the results, here are the tests which would normally be done, there often is a lack of knowledge out there! hughes-syndrome.org/about-h...

    MaryF x

  • Thanks Mary. At the time I just thought it meant it was negative. It took a lot of arguments just to get my ranges and the Practice Manager said usually a charge for the enquiry and letter but they would waive that this time. I also said about results on my profile. Apparently they are only put on if a problem and I said I wanted ALL tests and results put in as think being ok on a particular date is also important

  • Well, if it was positive it will say so, and if so, you need a referral to a rheumatologist, but it may well be negative in which case, as least it was good that the gp/consultant thought to look. Best wishes. MaryF x

  • Wow, Jo, well I guess you got your diagnosis. Did you have any idea all these were going on? I guess one good thing is that some are treatable and possibly will make you feel much better.

    I've been posting these videos but can't remember if we ever discussed them. You'll have to forgive me if I'm repeating myself but I think they are very informative. These are on high testosterone but he discusses 22 different reasons for low thyroid symptoms.

  • Hi Heloise! Thanks for the videos. I don't believe I've seen these ones before so I'll play them both now. I've watched other ones by this doctor.

    I knew I had Hashimotos but it was simply a matter of getting this confirmation out of a doctor. And now I have. :)

    I also suspected an adrenal connection and possibly Addison's but the dark patches on my back surprised me. But then again it's not an area I can see very easily. ;)

    Any idea where I can get this T3RU test? Blue Horizon don't seem to do it and googling it doesn't bring up anything either. :( I could ask my GP but are they likely to know about that sort of thing? They readily went ahead with the Anti-TPO.

    Thanks

    Jo xxx

  • Sorry, I don't know about the particular test but I will try to check it out. Have you heard about low dose naltroxen (LDN) used for autoimmune disease. They have been studying it for MS but it was used in high doses in the 90's for alcohol abuse. It seems to be a safe drug and some people here are trying it. If you have time, two more videos that might apply.

  • Hi Heloise, thanks for the videos.

    First one mentions excess prolactin but since it could be caused by a tumour in the pituitary this has been ruled out with an MRI on my head done a couple of years ago. My breasts don't leak milk either so I'm not overly sure. I could get tested for Dopamine/Progesterone though and see what's going on.

    Second one is interesting as it mentions excess cortisol. Blood sugar is always right down the middle when tested so I don't know however. They are very informative and point to a lot of things I could have but with me I don't know what's going on!

    I've seen LDN mentioned on here but never known what it is. It seems to be something I have to ask my GP to prescribe and I know full well I will have a battle on my hands in getting them to do this. I'm already dreading my appointment later with one of the GPs to get them to sign me off as I know they'll look at my TSH and say "your thyroid function test is normal" and refuse.

    Jo xxx

  • I do think either leaky gut or blood sugar problems underly most autoimmune conditions. Eating processed foods has just ruined our gut and then add artificial additives and other toxins.....so difficult to be healthy. Keep us posted, we're rooting for you.

    Are you permitted to get a prescription and fill it yourself? I think LDN should be inexpensive.

  • Aww, thanks Heloise. I've come too far to give up now.

    I don't know if I am permitted to get a prescription and fill it myself. Can I do that on the NHS? The only thing I can do is fill out a repeat prescription but that's only for medication I currently take.

    Jo xxx

  • I don't know, Jo. I'm in the U.S. While our doctors are just as belligerent we do have a little more freedom for buying our own medication. I think Mary F. (above) might have conveyed that she took it. Maybe you could ask her about it.

  • Ok, no worries. I could pm her or see if there are any posts on this that might explain how I can get this through NHS. Thanks for your help Heloise, you've been brilliant. :))

    Jo xxx

  • Jo, you are the brilliant one but thank you. We are all fighting the good fight.

  • Me? Brilliant? Aww, I don't see how I am but thank you.

    Jo xxx

  • Hi Jo so pleased to hear you seem to be on the path to a full diagnosis - well done for trying to be so informed - take care

    S xx

  • Hi Sarah, thanks for your reply. I had a bit of a breakdown in the practice today though as I was trying to explain to the receptionist that I was looking to my GP to sign me off as I'm really not well enough to be jobseeking.

    I was constructing my explanation as to me having an autoimmune illness and then everything from yesterday's appointment with my Endo just hit me. My inner thoughts were like, "I'm going to have to tell her I have Hashimoto's - wait - the Endo also said I could have Addison's too" and then BANG the tears came. I felt like such an idiot though. ~

    Even when I was walking back to the car people were giving me strange looks because tears were streaming down my face. I just couldn't help it. :(

    Jo xxx

  • sorry to read the above Jo (and sorry for such a late reply).

    I can really identify with that feeling when in the doctor's waiting room, and is why I rarely go to the doctors (in spite of needing to). The last time was 2 years ago with a new patient check after moving house. (Having lower leg/feet lymphoedema too makes it difficult).

    It kind of overwhelms you with it all when you are there - at least at home you can distract yourself away from your health problems. It's not nice to be having to give details to the receptionist in the very public waiting room too.

    I hope you will feel much stronger emotionally soon and hopeful :)

  • Hi Mazb, no worries about the late reply. :)

    I will feel much better soon, I'm sure, but I know that the best thing I ever did was leave my job due to the illness. Looking back I doubt I would even last a whole day from 8am to 4pm.

    Thanks for your reply.

    Jo xxx

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