Not coping with fatigue and GH

Allergies, blood and immune system
1

Hi

I'm new to this :-) I have suffered from depression anxiety and psoriasis and bowel problems since my early 20s. In the last 5 years I've been diagnosed with ibs then psoratic arthritis which I was prescribed methatrexate and fybromyalgia which I had a change of prescription to duloxetine. I also take fuloxetine for depression naproxen for pain. At rheumatology and gp my bloods are regularly checked for liver function for the methatrexate and it seems they are always up and down. I had been complaining about weight gain round my middle no matter how well my diet was it was expanding, shortness of breath and pain in my hands and feet for months. I also went from being very cold to then hot very quickly. Gp did loads of checks including liver scan which showed some fatty deposits. November 2016 I got a phone call from the consultant at rheumatology to stop methatrexate immediately as my liver function test was at 500 (alt I think) and high levels of iron, and to attend for blood tests. December it was confirmed Haemochromatosis and that until I saw the gastroenterology consultant to keep off methatrexate. I was given a steroid injection for the joint pain on the day but it never gave the same relief it did on previous occasions. My psoriasis flared up and was referred to dermatology who have now put me on meds which they say will help with the arthritis too but now 2 weeks later I still have'not seen an improvement in either joints or skin. Gp changed co codamol to tramadol as it was causing my skin to itch. Fatigue is playing a massive part and I'm struggling to keep going to my part time job. I feel I can hardly lift my arms and my legs feel heavy and useless. It's now having an effect on my mental Health as I'm feeling so low. Always thought I would be heathly and fit going into my 50s but as I've turned 50 this year it seems to have all gone down hill and I feel miserable. Still no word from gastro re referral since early December either. Sorry for the rant just feeling sorry for myself. Because no one can see the symptoms I think it's hard for someone to understand how bad you can feel some days.

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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

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Thank you for your reply and kind words xx

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Hi Marcia,

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 . . . .

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Thanks Gillian for the info . I had thought about celiac. ... My mum had lupas copd arthritis and osteoporosis. (I have osteopenia), and heart failure for a few years before she passed away. My dad had heart disease and liver disease. Neither were diagoosed with GH. It's difficult to understand if you have 1 diagnosis or umpteen with simliar symptoms. I've reduced gluten and red meat but not sure if this had made a difference yet.

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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.....

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Should say 30 yrs not 49

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Thank you for your advise I think it does play a part!. Exercise I'm finding difficult. I've always kept fit but it's non existent at the moment and for some time. Some days I can't bend to put my own shoes on!

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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.

 

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Oh dear Dheryl you have been through the mill! Everyone seems to find ways of coping by trial and error themselves rather than getting help from medial sector. I got my diagnosis from a nurse at rheumatology when she was reading through my notes. Never even got a leaflet to read to advise what it was and what to expect just that there was too much iron. My younger sister was diagnosed with fybromyalgia 6 years ago but she has very similar symptoms so when she told her gp about my diagnosis he has started GH tests. I'd asked back in December should my 4 kids aged 12-23 get tested and they said they would get info and get back to me but not heard a word yet. If it wasn't for the likes of these sites I would be ill with worry not knowing what to expect

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Marcia, you will get formal information from your country's haemochromatosis association.  Generally, 'children' from 18 years are able to be genetically tested, especially if a parent is confirmed genetically.  It is important to know what HFE gene/s you have.  The association may have a letter or information to take to dr to get your children tested.  Unless your younger ones have symptoms, like from juvenile haemochromatosis, there is  not likely to be a chance to get them tested yet.

You do seem to have medical people who don't know much about it (which is still pretty normal), so you have to educate yourself and advocate for yourself and go armed with this information to get action.

Haemochromatosis causes fatty liver which then in turn increases ferritin too.  

The knowledge available now is that sugars and starches cause fatty liver - we don't use up the energy and it converts to fat.

So far researchers say that de-ironing will not cure the arthritis caused by HH but hopefully it prevents it from getting worse.

I am currently having investigations into the pain in the feet too.  It is so painful to walk and all the walking I did in France last year really ascerbated it.  It could be neuropathy (caused by HH), or avascular necrosis of the feet bones (like my hips), caused by HH.  CT scan next week, if clear, next stop neurologist.

 

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Sheryl, what do think about the supplemen CoQ10 . Is it something to consider taking

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Hi marcia9999 , I suffer from the same condition and know exactly what you talking about . I still attend hymotology clinic for bloods but still don’t have any answers I have arthritis, psoriasis, terrible joint pain that sometimes just gives way when I’m lifting something or just walking , constantly tired depressed and just feel I’m burning and aching all over , I’m glad I’ve read your post don’t feel alone now as I think my family think because they can’t see it they don’t understand the pain and misery it causes . Psoriasis has flared up big time but with the doc I just feel as if I’m been past from pillar to post really frustrating xx

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Hi lynnsk, sorry I missed this.  Must have been when I was overseas.

In a haemochromatosis research study, long term high TS% indicates damaged mitochondria and CoQ10 and Vit E was suggested.  Find a good practitioners brand for the CoQ10 or you are wasting your money.

I don't know if it is helping but if the researchers are recommending it then I am going along with it.  I don't think it is something that can be measured like Vit D and B12, but one would hope that my TS% is reduced.  Sometimes it is (since) and sometimes it is not.  Maybe I should double or more my intake but a good brand is expensive and I can only treat myself with it now and then.

 

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Hi anne-marie42469. It is difficult isn't it. I think it's difficult for others because you don't always look ill and I feel I come across as being lazy and can't be bothered. Quality of life is just not the same. It helps when you don't feel alone. Is it PSA you have? I'm now on biologics. Cosentyx made me itchy so now on Golimumab but my psoriasis is getting worse and joints aren't great xx

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Hi Marcia, I’m not sure what I’ve got , my thoughts are it is PSA my gp told me I had exzema  and arthritis , was sent for MRI scan for my joints as sometimes my leg or elbow just gives way without warning they couldn’t find anything wrong , my whole body is broke out and scalp with psoriasis and just by doing my own research think it is PSA , I know what you mean Marcia when you just can’t get motivated to do anything and it does look as if we are Lazy but no matter how long I sleep / rest still feel exhausted at times not always but when I’m down I’m down and just seems to be getting worse as time is going on thanks for getting back to me your help or knowledge could be a great help to me xxx

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Marie, no problem at all . I know what you mean. If suffered depression on and off for years now and it's difficult. After I posted this Last year I kept going trying to do everything and just burnt out. I was off work for 4 weeks and went back too soon and 6 weeks later I was off again for 6 months. I went back late Last year with a phased return and really only up to my 18 hours a week now. Are you in the UK? Xx

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Yes Marcia Scotland, I had an accident at work I was a care worker worked 72 hrs a week and loved it had time off for my knee then the company I worked for pulled out the package so had to find another job as my hours dramatically dropped so end up as a cleaning manager in a super store and tripped over a mop bucket that set me straight back to knee injury getting worse so I’ve been singed off completely and you know the rest from being in the public to not working anymore total isolation makes depression worse , are you in USA ? UK ? Xx

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Best sticking to what you can cope with Marcia , rather than pushing yourself only makes you worse trying to cope with the rest of life never mind work xxx

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Hiya. I'm in Glasgow. If you are on Facebook there's a great wee group - uk psoriatic arthritis group. It's very informative and supportive and you will realise you are not going through it alone . If you are, and you would like you can look me up in there and add me and we can talk further xx