Not coping with fatigue and GH

I feel so sad for you. It sounds like you have a lot to cope with. Hopefully, now that you have a diagnosis, you will start having venessections & many of your symptoms should be alleviated. Good luck x

It is a continuing uphill battle when you have a debilitating condition that isn’t easy to diagnose, facing dubious doctors more inclined to prescribe symptom-reducing meds like painkillers and antidepressants than to tackle the really difficult and time-consuming work of helping you search out the underlying causes and hopefully FIX them.  It sounds as though your GP knows you and understands what you’re going through, but is having trouble finding specialists who are ready, willing, and able to do thorough workups on patients who don’t have common conditions that fit neatly into the available guidelines.  I’d say welcome to the club, except this is a club none of us wanted to join! 

Anyhow, based on your brief history above, in case it’s helpful, here are a couple of questions you might want to ask your doctor(s)?

Question 1:  could you have celiac disease?  Three decades of bowel problems and anxiety and depression and psoriasis / psoriatic arthritis could be linked to celiac disease.  Reasons for asking:  celiac disease not only causes bowel problems, it also causes anxiety and depression and is associated with psoriasis.  Research is starting to tease out the genetic factors in common between celiac and psoriasis.  Also, in people who have both celiac disease and psoriasis, a few small studies show that going gluten-free not only clears up the bowel problems and extra-gastrointestinal symptoms like anxiety and depression, it also helps the psoriatic arthritis.  Hereditary hemochromatosis is also associated with celiac disease.

Question 2:  could your vitamin D levels be suboptimal?  Reasons for asking:  People with psoriasis tend to have lower levels of vitamin D than people without psoriasis, and people with celiac disease also tend to have lower levels of vitamin D (in part because with the inflamed bowel, they don’t absorb vitamin D very well).  Also, both UVB exposure to increase the vitamin D you make in your skin as well as taking high doses of vitamin D have been shown to improve psoriasis. 

Let me know if you want a few recent references from the medical literature on the above –

PS  In the interests of full disclosure, I’m suggesting these two questions because of what happened to me:

I was diagnosed with palindromic arthritis because of recurrent joint flares where one joint – a different one each time – would suddenly decide to get red and hot and swollen and hurt like crazy, then gradually get better over a week and get right back to normal.  I was told that 1/3 of the time, palindromic arthritis would progress to rheumatoid arthritis, 1/3 of the time it would progress to lupus, and 1/3 of the time it would just stay as palindromic arthritis, and there wasn’t anything to do about it other than take painkillers.  I’d never heard of palindromic arthritis, so I went searching the internet.  I found very little in the medical literature, but I did find a number of postings from people with palindromic arthritis and from people with rheumatoid arthritis and people with lupus, all saying something along the lines of, “Then I went gluten-free and I got way better” and – from people who were taking medication for RA or lupus – “I could cut right down on my meds / stop my meds altogether.”

I thought that a gluten-free diet would be less of a hassle than joint flares, so I stopped eating gluten.  Within 48 hours, the chronic diarrhea I’d had for several decades (diagnosed as “irritable bowel”) stopped!  It turned out I also had some other milder food intolerances, and once I was off gluten and didn’t have diarrhea all the time, I could figure out the other culprits and stop them too.  After coming off gluten, I had no more diarrhea, no cramps, no gut pain, and no joint flares either – unless somebody assured me that something didn’t contain gluten when it actually did contain gluten, in which case within about 15 minutes after eating whatever it was, all my gut symptoms returned, and within a day or two, a joint would flare.  So going gluten-free fixed my “irritable bowel disease” and I could stop taking antidiarrheal medication.  Going gluten-free also fixed my palindromic arthritis.  I haven’t been diagnosed with celiac disease because I’d have to go back on gluten for several weeks before I could be tested.  As much as I love and desperately miss home-made bread fresh out of the oven, there is no way I will voluntarily go through one day of what even a tiny bit gluten does to me, never mind two weeks of lots of gluten.

I was more tired than usual while all the above was going on, but despite stopping gluten, the fatigue just kept getting worse.  I then developed chronic arthritis and was diagnosed with iron overload and non-inflammatory arthritis (probably calcium pyrophosphate deposition disease.)  My rheumatologist recommended that I keep my vitamin D level over 100 nmol/L of 25(OH)D and preferably between 125-175 nmol/L, using a D3 supplement.  (If you’re in the US, 100 nmol/L of 25(OH)D is 40 ng/ml, 125 nmol/L is 50 ng/ml, and 175 nmol/L is 70 nmol/L.)  Vitamin D3 is well absorbed through the skin and for me, 4,000 IU/day (4 drops of 1,000 IU each) keeps me nicely in the 125-175 nmol/L 25(OH)D range.  I’ve also got thyroid issues (intermittently low T3 with normal T4 and thyroid nodules) and possibly parathyroid issues as well (high PTH once despite optimal vitamin D levels) and I’m still profoundly fatigued.  This means that, like you, I’m still going through the “please help find out what’s wrong with me and fix it” process . . . .

Hi Marcia, I'm new to this too! But I'm 60 next week as fit as I can be and just found out I have Hemochromatosis as well . Levels frighteningly high!!! For 49+ yrs I had joint pains alsorts degenerative spondylitis. They didn't know jack. I put off back surgery decided to stop all pain killers. Yrs ago I had 8 injections in my back , arm knuckles & finger. Last thing was pain in fingers (index & middle) both hands and wrists all this before my now newly discovered genetic fate but has caused severe cirrhosis. No one gave me an iron test ever as GP Consultants from 10 yrs ago (looked for cancer , told me I had it then I didn't they were unaware!!!! Or my situation maybe could have been avoided...My advice go with your gut on pills !!! Look up everything to help yourself. I wouldn't leave consultant until he booked next morning for phlebotomy,had 3 weeks blood donation now,and changed my diet I'm doing ok.... hang in there..... stay positive , be active in your exercise and look at food combinations....google homeopathic dr buy the Ebook or hard copy , study it and take control back of your life.

I'm trying to bring my levels down to save my liver.....

This disorder does terrible things to us when we have had a delayed diagnosis and treatment.  Because of this, some problems never go away.  I was superwoman before this.

16 years after being de-ironed I am still searching for solutions for fatigue, body pain, hair loss, suddenly freezing when it is hot, and sweating when it is cold, or just switching between the two for no reason.  Shivering violently is another energy robber, as is hot sweating.  While I have been using oestrogen since my hysterectomy which started all this more than 27 years ago, it is often difficult to separate some of my problems from menopausal symptoms and HH.

A dozen times I have searched for solutions to head sweating.  I finally found a good reference to it just recently with jeff baker md.  Insufficient vit d.  According to him it is a cause of a lot of problems, including psoriasis as gillian says.  I did have low vit d, even though I took double vit d tablets.  They were not working for me but vit D3 drops did and brought my levels up.  However, since reading this article, he says the optimal level is 6000 units, which is 6 drops.  My dr had told me to take 4.

I live in the tropics so I should be getting plenty of vit d but some of us don't absorb easily.  Plus just before xmas I had a large melanoma removed, and had to go back and have 2 cms thick x 8.5cms wide more removed to be on the safe side.  So no more vit d from the sun for me, although the damage is done years ago really.

At the same time, my current symptoms definitely added up to insufficient oestrogen.  My 12 month implant had run out in only 6 months.  My body needs a lot of oestrogen to function well.  HH is a hormone thief.

I put on the strongest patch plus the increased vit d3 dose.  Instant relief to the sweating, depression, anxiety, foggy brain, even hair loss seems to have decreased.  A 3.5-day patch lasts me 2 days, then I top up with gel almost twice a day because it does not seem to work as well, and I am only allowed a certain number of patches per month.

While I think I may be gluten intolerant, I feel a lot better if I avoid all starches and sugars, and my waist returns too.  If I eat a meal including these (potatoes, pasta, sob!), I feel like I have been hit by a truck and slump with fatigue, not to mention digestion problems.

I had to give up work 12 years ago because of this fatigue.  So I am only feeling better now because of that.  In the 9 years I was undiagnosed, I was slurring and staggering, body pain, constant pain left side chest like I had a swollen heart, couldn't think.  I used to say it felt like I had lead in my veins.  Well, I was close.

I ended up with avascular necrosis of the hips and they broke up - that was how I finally got a diagnosis of HH.  I too took tramadol, long after my 2nd hip replacement because the surgeon botched that one.  I hated having to take it, so weaned myself off.  I still have pain standing, sitting, lying ...  Pain is also fatiguing but I don't want to take that stuff anymore.

Sounds horrible, but the latest medical cure for celiac disease is hook worms.  Drs inject the hook worm (egg?) under the skin, and what ever hook worms do, is good for celiacs.  This is not an alternative medicine solution.

This is not a complete list but I am trying to stick to how I am dealing with similar to you.

Reading up on your issues and going armed with information is a good approach.  You have to know that the treatment you are getting is the right one.  Also ask for copies of all your test results so you can learn to keep an eye on them yourself.

Good luck with your consult.