I'm at a dead end with diagnosis before I've even started :( advice please re: fatigue...

[KeepsAwayTheNargles]

I've been excessively tired for the past few months. If I have a busy day, the next day I'm totally wiped out. I work from home and can barely focus on it most days so that's suffering. I have basically zero sex drive - I can look at DH sometimes (or Kit Harrington...) and go "oooh, nice" but there's no motivation to do anything beyond that. I want to be able to focus on a book, I can't most days. I want to be able to do some yoga, I can't most days. I've dramatically improved my diet and started taking vitamins, which has made a marginal difference but not enough.

I had bloods taken last week which came back as normal, except for low vitamin D. When I had my initial GP appointment she said they'd test for everything physical via bloods, and if they were ok then we'd see if it was depression. I don't feel depressed, I feel frustrated and miserable that I'm so fucking tired. My work is suffering, my parenting is suffering (less patience) and my relationship is suffering - DH is lovely and patient but I want the energy and motivation for sex again!

I feel like because my bloods are normal I'm going to be given a choice of antidepressants or nothing. I'm not depressed. I'm frustrated and want some bloody energy to enjoy my life!

Does anyone have experience of this? Any ideas how I can avoid being fobbed off with ADs? I really thought the bloods would show something that could be easily fixed and now I feel like I'll be stuck like this forever :( any advice would be much appreciated! Thanks in advance for getting through reading my mini-essay

The hair loss has really thrown me off. The patch is tingling today which from googling is normal for alopecia areata (which this certainly looks/seems like). I've never had this before in any of the infinitely more stressful periods of my life, so why now?? It seems weird and I wonder if it's related or just coincidental. I am hopeful that vit D supplements will give me my energy (and hence my life!) back. I really hope they will :(

I wonder if the GP will want to offer both that and ADs though. This whole thing is so exhaustung to think about, which sooo isn't helping!

I'm not convinced that our estimation of stress and our bodies necessarily tally up. If that makes sense. I've had some extreme physical stress reaction when I've not considered myself to be particularly stressed.

Agreed. I was convinced I was getting random upset stomachs. Until I had a very stressful hospital appointment. Cue very upset stomach.

Keeps - bear in mind that the GP can offer you ADs, they can even prescribe them for you, but they can't make you take them!
So if they do, take the scrip, don't fill it unless the vit D has zero effect and you decide you want to try it.
But try the vit D first.

Yes they can test the mineral levels in your blood but it's not very helpful, as to know if your deficenet or not you would really need to know the stored levels with magnesium this is in your bones I believe. Testing the levels in your blood doesn't tell them if your deficenet or not just what you've been eating.

Anyway yes salt baths are a really good way to get magnesium. Just remember to drink plenty of water while you have one. Nice bit water helps you absob the salt, seems to be good for the skin to.

Thanks Thumb :)

Will look into bath salts too :)

You can get high dose vit d from a health food shop without prescription
And get a little sun
Combined with a diet change you may see a difference

Hi ferritin is optimal around 70, I would take an iron supplement, maybe floridix or spa tone sachets. That will help with fatigue too x

I already take iron supplements as I'm prone to anemia, they're in tablet form, are those other ones better...?

I'm no expert but I've read that bog standard ferrous sulphate is hard to absorb, ferrous bis glycinate or fumarate are easier and don't pass through the small intestine with out being absorbed.
Vit c is essential to aid absorption too. I think there is more to it than just taking an iron pill, eggs and spinach are not the best sources, red meat is ideal. If you're already supplementing and your iron stores are still on the low side you need to look at why. Heavy periods, no iron rich foods, bleeding from somewhere? Hope I don't sound condescending and that you feel better soon x

My OH vit D was 18. He felt crappy. GP took no action. We looked at website vit D council. He started 5000 units /day. Three months later he was only up to 60 but felt so much better. We bought the vit D on Amazon. A friend who is a GP thinks UK levels and doses are much too low and takes high dose herself.

You haven't had a proper thyroid panel done! I am willing to bet my second-favourite cat's life that it's your thyroid.

Your GP has only tested TSH, that's not enough to assess your thyroid - you need to test T3 and T4 levels too. My hypothyroidism wouldn't have been picked up with just a TSH test (see my post from yesterday).

And check out the website Stop the Thyroid Madness for more info.

The hair loss and vitamin D deficiency are CLASSIC indicators of possible hypothyroidism.

Following with interest, have a lot of the same symptoms and haven't seen my libido in a couple of years now - literally can't be arsed.

Should probably go back to the Drs but can't muster the energy...

I'm with feesh. It sounds like a thyroid problem, especially with the hair loss.

Ask your GP to test FT4 and thyroid antibodies.

Interesting. The GP I'm seeing is lovely so I'm sure would agree to a bit of extra testing...

If vitamin D deficiency and hair loss are also thyroid symptoms I will ask if we can test my FT3 and FT4 to put my mind at ease. Would that do it or am I missing anything else?

I totally forgot but its playing up right now - I've been having numbness in the toes of my right foot - also a hypothyroid symptom right? Numbness in extremities?

I don't want her to think I'm being ridiculous but if I don't double check I'll keep worrying wondering I think...

You need to up your ferritin to about 70. Mine got down to 3 at its worst

I've had similar v recently. Went to doc after almost fainting in a meeting at work. Had a blood test and ferritin was 6. But doc seems to think low ferritin shouldn't affect me that much and is trying to put me on sertraline They haven't taken it seriously at all but I had to two weeks off work because I could barely function. I felt a bit better after two weeks on iron pills but still a way to go.

Hair loss can also be a symptom of iron deficiency, IIRC, as is low mood and poor concentration. Are you short of breath? Having palpitations/racing heart? That's what I've had.

Yes numbness can be a symptom. I have numbness in both of my big toes. Also I have no ankle reflexes at all, reflexes are often slower. You may also have a lower basal temperature and heart rate.

If she's happy to test you then I would ask for FT4, FT3 and TPO and TG antibodies. Some people find that they have a normal TSH at the moment but elevated antibody levels which may get them to treat you if they find your your FT4 levels are also low.

I'll definitely ask for the full lot of thyroid stuff, I'm sure she'll think its reasonable with the numbness and hair loss... And of course I'll start taking the vit d anyway!

Interesting to hear so many people describing similar symptoms to mine when my Vit D was what the GP described as borderline after 3 months of the standard RDA. I felt awful. Just awful. Knackered, aching (especially my ribs), foggy brained, numbness and tingling on and off. GP was sceptical that Vit D was responsible for all of this but I increased my dose to 5000iu and the difference in a month is astounding! I think the understanding of the effects of Vit D deficiency has got some way to go, a sit seems to have much more profound effects on some than on others. Agree with others upthread that a full thyroid screen would be a good idea for OP. And thanks whoever mentioned Epsom Salts bath - I prescribe myself some nice hot baths!

keeps

Just a word of warning my surgery only does the basic thyroid test

So be prepared to be told no and have a little look at private costs...i really must do that myself

No way we could afford it privately... I may give it a go with just the vit d and ask for further thyroid tests if it doesn't help. From what other people have written about their experiences it seems like vitamin d is a very likely culprit mind! Its just the hair loss that's creating that extra niggle of doubt.

keeps I feel for you. Most of what you describe has been my life for the last 7 months. I was diagnosed with a vit d level of 17.5. I dutifully took the high doses of vit d, then bought myself some high dose vit d from Amazon and also took calcium. From September to December I struggled to walk, numbness, tingling and brain fog and I hardly worked, even loading the washer sent my crawling to the sofa. I saw a rheumatologist who made me feel worse and I was made to feel I was making it all up and swimming would help. Grrr

After Christmas and nearly 8 weeks of "rest" I went back to work full time and felt better for a month. Then I started to decline again. I then discovered an article on Magnesium.

A week later I began to feel human again. No one will give you a concrete level of what you need to take but do take vit d, calcium, magnesium, iron and folic acid. These got me on my feet again.

Unfortunately for the last two weeks my symptoms have returned. I've just had a week off work, the doctor has just signed me off for another two weeks. My last vit d test was 101 so it's not vit d. I've had numerous appointments with the doctors, numerous blood tests and they won't refer me to anyone at the moment until I have " rested" for the two weeks. I've not had symptoms long enough for the docs to consider CFS or fibromyalgia WTF. But one thing that has been mentioned throughout my illness is a post viral infection. When I think about it, I struggled running in Feb 15 after an illness and by summer I had stopped. For each relapse (3) I had been ill just before. They cannot pinpoint every virus but have tested me for the basics. Maybe something to ask for if you get told like me, all your tests are fine.

I feel for you and hope you have a diagnosis/solution soon. For me this is what is worse, I just want someone to say this is what you have, this is the cure/how to manage.

Keep pushing the docs. Good look. Hopefully it will be a quick recovery for you, but you are not alone, I think there are a lot of us suffering with these types of symptoms X

keeps

I was just thinking of the test bit, it may still be expensive as i havent looked into it

Hope you find some answers

Hi Nargles,

Haven't managed to read through the whole thread but just wondered if you had vitamin b12 levels checked?

From your original post that sounded exactly like me a few years ago. I was tired all the time, no energy at all, weight loss, hair loss, palpitations, breathlessness and just feel generally terrible all the time.

I had loads of blood tests done and every time told that it was all normal. The lower level in this country for b12 is 200, mines was 150 and still told everything was normal. It was only after attending a GP appointment with a relative who is medical and asking for a breakdown of each result that this was then picked up on. My vitamin d was also low, and was prescribed AdCal D3 tablets for this.

I was given a loading dose of b12 - 6 injections over 2 weeks and within about 3 weeks I felt like I was getting my life back. I need these injections for the rest of my life and I still have good days and bad days, but nothing like the way I was before I started the correct treatment.

here's a few websites that might be helpful:
www.b12d.org
www.b12deficiency.info