Addisons or LOCAH? Confusing results...help needed.

[trying80]

Hi,

I am hoping that someone can help me make sense of my cortisol and androstenedione results.

My endo did a full range of bloods to rule out Cushings and Late Onset CAH. Am i right in thinking that the results below are indicative of LOCAH and Addisons? The reason i ask is that LOCAH has been ruled out before but after these results, the endo wants to repeat the androstenedione and then potentially do a synacthen test. I'm particularly confused about the cortisol results and due to my physical symptoms, think it maybe Addisons instead as i'm also very anemic.

The Androstenedione levels are 17.2 nmol/L ( range of 3-8).

The DHEAS are just below the normal range at 1.8 (range of 1.9-9.4)

There are two results for the cortisol, 226 nmol/L (pre dexamethasone) and 17 nmol/L (post dexamethasone). I haven't been given the reference range for the cortisol but after reading some posts, assume that 226 nmol/L is still quite low.

The LH levels were 27.1 ( range of 2.0-10.0)

Serum Ferritin 2.1 (range 10-200)

Thanks in advance

[poing]

Seriously? A ferritin of 2 is the lowest I've ever come across. I have a friend whose iron stores were 4 once. Your ferritin is related to your iron stores and you don't have any.

I am willing to bet that your lack of iron is causing a huge number of symptoms. When my iron was low, I was so cold I couldnt function, i was in a permanently stressed state from this with zero tolerance for anything, and my hair was coming out in handfuls.

Get your iron fixed before doing anything drastic in relation to your adrenals! Your adrenal tests might come back completely different when your iron has improved. Lack of iron inhibits all sorts of enzymes in the body, including those involved in hormone synthesis and conversion.

[trying80 in reply to poing]

Thanks for your response Poing,

Does anyone know a doctor speacialising in anemia? I was referred to my local NHS gastroenterologist who recommended iron tablets. I find i get really constipated on these , even the slow release ones so we then tried intravenous iron to which i had a bad reaction so couldn't continue with this treatment. After this,the relationship between the consultant and me deteriorated and i stopped seeing her (5 years ago).

Funnily enough, i found that my iron levels improved dramatically during my pregnancy (3 years ago) more than likely due to no blood loss of monthly cycles; but 2 years later i have become very anemic again.

I have also been diagnosed with PCOS but when i started the metformin, my hair fell out in clumps. After doing research i found that metformin can lead to anemia and it was clear that my ferritin levels had dropped significantly since starting the metformin.I have started taking iron tablets again but it is clear that i need to get ontop of this problem properly like you said as it can affect so many things. As far as i know, i don't have pernicious anemia and an endoscopy didn't find any internal issues.

Would appreciate further input about this or the original topic.

[poing in reply to trying80]

Well, it sounds like you've been very low on iron for a very long time, and that could be why you had a bad reaction to the iron infusion. I had a bad reaction when I started iron supplements. I think the body gets adapted to not having much iron around, and then when it shows up in a large amount all in one go, then the body cannot handle it all.

The iron supplements on prescription are not very absorbable, they contain a high dose of iron to make up for it, and it's the unabsorbed iron that seems to cause stomach problems. I opted to use the two liquid versions of iron, which are better absorbed and have less side effects. I used Spatone and Floravital, which is the gluten free version of Floradix. I would choose Floravital over Spatone because it was the Spatone that gave me the bad reaction (it's is incredibly absorbable, too much for someone in a long-term deficient state), and because Floradix/vital also contain co-factors, like vitamins B9 and B12, which help your body use the iron it's being given.

However, you sound like you need something stronger. I have heard very good things about Proferrin, and that's what I'd choose if I needed iron again. You have to order it from the U.S. but I know people that have done this. The iron in Proferrin comes from haem (red blood cells), so it doesn't compete with other nutrients for absorbtion like the standard inorganic iron supplements do. When you take in inorganic iron, then copper is used up converting the iron into a form that the body can use. If you have a lot of bleeding, then zinc can become depleted as well as iron, and iron and zinc compete for absorption. It sounds to me like Proferrin would sidestep these problems.

Metformin depletes vitamin B12 levels, which causes a different type of anaemia... you don't need to have pernicious anaemia to have low B12. Having bad side effects with metformin suggests to me that your B12 levels might not be great either. It would be worth getting that checked. I think that patients on metformin are supposed to get their levels checked and topped up regularly.

I hope this helps!

[trying80 in reply to poing]

Thanks for your detailed response poing.

I hadn't heard of proferrin so will definitely look into that. I'm disappointed that my endo (who knew i was anaemic), didn't pick up on checking my levels regularly when he put me on metformin. He insisted that such a small dose of metformin would not have an impact on my anaemia when i was adamant that my hair loss was due to the metformin because it depleted what little iron i had left as i felt awful. It was only after lots of research that i found evidence of metformin potentially contributing to the worsening of my anaemia.

Would you know how much elemental iron the proferrin has compared to the prescription iron tablets available on the NHS? When i saw the gastroenterologist years ago, i needed to take 3 ferrous sulphate tablets per day to get the required amount of elemental iron.

Thanks for your time.

[poing in reply to trying80]

It says on the web that Proferrin contains 12mg of elemental iron.

However, the amount absorbed makes a huge difference.

For example, ferrous fumarate is 33% elemental iron, and the tablets are 210mg, so they provide about 65mg element iron BUT you might only absorb as little as 3-5% of the iron from them... so that would be equivalent to about 3mg iron absorbed. That's why they cause so much gastric distress!

For comparison, one sachet of Spatone contains only 5mg elemental iron, but this has been shown to be as much as 40% absorbable, so you could actually receive 2mg of iron. However, people say these work as a short term pick me up, but don't provide the benefits over the longer term.

Here's the FAQ on Proferrin:

proferrin.ca/faqs/

I don't think Proferrin is directly comparable in terms of its iron content because it is absorbed in a different way. You can take up to 3 tablets a day.