I'm new here...

I have had ME/cfs for almost twelve years, a long time. From the very beginning I was found to have a ferritin level that ran on the low end of normal, it was 19 and came up to 64 after iron tablets.

I've been 6.4 and 5.8 for TSH a year or so ago. I fluctuate and at present it's 3.5.

I'm perimenopausal. Around four weeks ago, after being nine weeks late to menstruate, I had 22 days of blood loss, some days heavier than others. At around that time my hair started to shed much more and I discovered a small bald spot. I got anxiety and felt absolutely drained of energy, different quality to that of ME.

I have had a progressive thinning of the hair in strands and volume, all over my head. A small bald patch was discovered around two months ago too.

I saw a dermatologist. She said that I had a few things going on. 1. Alopecia areata. 2. Hair loss due to low ferritin. 3. Hormonal changes.

She recommended that my GP check ferritin and thyroid function. Also that he assess menstruation issues.

She asked the GP to treat the low ferritin and told him it needs to be half way between the range.

She asked GP to refer to endocrinologist to see if I could be treated for thyroid as it runs hand in hand with alopecia areata and I have most symptoms of low thyroid, I also have strong family history of low thyroid. She said even though it's in range I may benefit from treatment.

My GP reluctantly agreed to do blood tests, adamant that my ferritin is normal, it's often around 22. In June it was 58 but this was before the 22 days of blood loss. He absolutely refused to refer to endocrinologist. I told him that I'm wanting help if I can have it, I've been ill for 12 years and maybe I need to be looked at individually, as I present and with my symptoms as the normal may not be my normal, he did stop and think about that.

I've been asking about ferritin for years as my hair has been thinning and my GP has just looked at computer and said it's normal, this has been when it's 22 and I've since developed Microvascular Angina. I've asked him and endocrinologists about thyroid and nothing ever gets done.

Any suggestions or adv, thoughts or help greatly appreciated. I just want to have some kind of life back.

By the way, nice to be here.

[shaws]

Welcome to our forum, and the help you've been given by the medical profession is wanting to say the least.

If we were in another country and had a TSH of 3+ we would be diagnosed as hypo. Probably because your TSH didn't reach the magic 10 (in UK) no-one diagnosed but gave you other 'names' as you had clinical symptoms, i.e. ME/CFS. I have read that since the blood tests were introduce din the 50's/60's that it was about ten years afterwards that new diseases were named, i.e. ME/CFS.

If you can afford a private blood tests we have recommended labs which will do all that is required and your GP can test vitamins/minerals.

Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones (I know you aren't on them yet) .

The blood tests from the labs are home pin-prick ones so make sure you are well hydrated a couple of days before so that blood will draw easily or you can arrange for a lab to draw blood.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should check B12, Vit D,iron, ferritin and folate.

Many of our members have sourced their own thyroid hormones and have recovered i.e. symptoms have resolved as it is a life-time of hormones due to hypothyroidism.

Blood loss is a clinical symptom and female problems are rife and I think you could tick off a few more on this link. We have to read, learn and Do It Ourselves if we want a quality of life.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

Always get a print-out out of your results with the ranges for your own records and you can post if you have a query.

Ask for copies of your previous tests from the surgery, we are entitled by Law. Some surgeries ask for a nominal sum for paper/ink. You can post these too.

[Hidden in reply to shaws]

Thank you very much for your detailed reply. For the first time, ever, I feel validated.

It's SO frustrating when the medical professionals don't assess the patient and just follow the guidelines.

Yes, it would seem that I have not, as yet, hit the magic 10.

Thanks for the links and information about what tests to have.

I had my Vitamin D checked a few months ago, it was around 30, but I was supplementing 2000iu daily and getting lots of sun. The GP gave me a weeks supply of high strength D3. My Vitamin D seems to drop.

My B12 is normally above range because I take a sublingual supplement daily, for cognition.

I wasn't aware that blood loss is a clinical symptom. I'll look at that.

Thank you, very much.

[shaws in reply to Hidden]

Tick off all of your symptoms and present to GP. I doubt they know one symptom whereas all doctors before the introduction of blood tests diagnosed us upon symptoms alone and we got a prescription for NDT on a trial.

We seem to have stepped back instead of forwards.

[Hidden in reply to shaws]

I will do. I'll print the form off.

I wish Drs would go back to diagnosis on symptoms.

Thank you.

[pinkjess17]

Hi agree with Shaws, you definitely need a full thyroid panel with medichecks or Blue horizon to see what's going on in detail. You most likely do have a thyroid problem with those TSH results. You may need to self treat as the NHS is particularly bad at diagnosing thyroid problems. I'm self treating and have a cfs diagnosis, got no where with the GP's. You can buy Solgar gentle iron tablets to increase ferritin more quickly.

[Hidden in reply to pinkjess17]

Hi, thanks for your reply. It feels so good to have others perspective and understanding and support.

Yeah, I think that's looking like the best course of action, the full thyroid panel.

Do you need to have thyroid bloods monitored if you self treat?

Are you feeling better since self treating?

Thanks for Solgar recommendation.

[pinkjess17]

Oh good, glad its helped, it's nice to have this forum for knowledge and support. Yes you do need to do your own tests every so often, but symptoms and how you feel in yourself is also a good guide. A thermometer and tracking your resting pulse is also a good way to assess your dose. Dr Peatfields book - your thyroid and how to keep it healthy is a good starting point. I am better but still adjusting the dose as tried NDT but didn't get on with that, so taking levothyroxine now working up the dose slowly.

Also you need to test for b12, folate and Vit D.

[Hidden in reply to pinkjess17]

It has helped, yes. It's very nice to have this forum. I have a copy of that book, not read it yet. That's interesting that NDT didn't suit you, do you get Levothyroxine from your GP? Is it suiting you? I hope so.

I hope my GP will test B12, folate and Vit D. He won't like me asking for them.

Do you think it would be worth seeing an endocrinologist privately? Or are they still bound by NICE?

[pinkjess17 in reply to Hidden]

Definitely give it a read especially chapter 9 on treatment. If your GP won't test the vitamins, it does come in a package with Medichecks it's about £89including antibodies etc. GP has refused on numerous occasions despite rising TSH and antibodies, so ordered T4 online myself. You could see an endo, but try getting one recommended on here. I saw one, had a bad experience so gave up but you may have more luck but they do seem to be bound by blood test results. There is another good forum - Thyroid patient advocacy, that has lots of information on treating with NDT and thyroid matters.

[Hidden in reply to pinkjess17]

Will do, thanks. Thanks for tip re: Medichecks. I wasn't aware you could order T4 online. I've seen one endocrinologist that was OK and one that was not so good, patronising. I'll look at the other forum too, thanks.

[humanbean]

One tablet of ferrous fumarate per day is unlikely to increase your ferritin levels very much. I had the same issue as you with regard to iron - mine was much too low for good health but I was told it was in range and I didn't need it treating. After begging repeatedly I got a prescription for ferrous fumarate 210mg(FF210), one tablet three times a day for just two months.

Purely by accident I then found out that I could buy ferrous fumarate 210mg over the counter in pharmacies without a prescription. It is up to the pharmacist's discretion whether they agree to sell without prescription - if one pharmacy refuses then just go to a different chain and ask there. It can also be bought online. I had no problems getting it from Tesco Pharmacy and Lloyds Pharmacy. I bought FF210 in boxes of 84 which is enough for three per day for 28 days. When I last bought it, which was quite a while ago, it was under £5 per box.

Iron is poisonous in overdose, so care must be taken to test fairly regularly - every 2 - 3 months, depending on how fast you absorb iron. The test I would use if I was testing just iron while supplementing is this one :

medichecks.com/tests/iron-s...

For info on optimal results, see this link :

rt3-adrenals.org/Iron_test_...

Ferritin is optimal around mid-range or a little bit over.

Be aware that iron supplements can reduce absorption of thyroid meds, so they must be taken 4 hours apart.

There is no way of knowing in advance how quickly you will absorb iron. Some people might fix a low level in 6 months or less. On the other hand, it took me nearly two years to get my results up to optimal, and I know some people never do manage it. If you change your diet it could change your absorption, so check levels sooner if you do this. As I said, I struggled to get my iron levels up for a very long time. Then I went gluten-free and my ferritin and other iron levels suddenly increased a lot.

[humanbean in reply to humanbean]

I forgot to mention :

Take each iron pill with 500mg - 1000mg of vitamin C - it doesn't matter which kind. Taking vitamin C will help your body to absorb the iron you are taking. It also helps to mitigate the constipation that many people get with iron supplements. High dose vitamin C causes diarrhoea. You need to get the balance right between constipation and diarrhoea - adjust the vitamin C dose to get it right for you.

[Hidden in reply to humanbean]

Ah, I'll try to remember that. I have been having 1000mg of vitamin C after breakfast.

Thanks.

[Hidden in reply to humanbean]

Thanks very much for this. Yeah, Drs really don't like to address low ferritin do they. Glad you managed to get the iron tablets and good to know a pharmacist may dispense them too.

Thanks for the link to Medichecks, good to know about that for checking levels.

I'm currently looking into which test to go for, if I get (which I hope I will) some thyroid medication I'll make sure to not take it at same time as iron. Thanks.

I went gluten free a while ago, my hb rose but I didn't get ferritin checked at that time. I was only increasing red meat and taking Feroglobin. I'm wondering if that's why my iron increased?

[Rmichelle in reply to Hidden]

Just thought i would add that i asked my doc yesterday about my very low ferritin levels and he dismissed it by saying they are in lab range, i said the very bottom though. Mine are 24 lab range 20-200. I have solgars gentle iron 20mgs only been on them 3 weeks but told doctor it will take months and months to see any sort of benefit, he said oh no it will show topped up within 2 weeks!!! What rubbish. My b12 and folate are fine.x

[Hidden in reply to Rmichelle]

It seems that GPs tend to dismiss low end ferritin levels. Yeah, my ferritin is often around the 22 mark and takes longer than 2 weeks to increase, even then (after 3 month of iron tablets) it only rose to 64.

[Rmichelle in reply to Hidden]

Yes its rubbish, im afraid its do it yourself, going to boots at the weekend.x

[Hidden in reply to Rmichelle]

I'm hoping my GP will help with my ferritin levels, got blood test in two weeks. Not holding my breat for the thyroid though...likely have to look into the alternative options for that.

[dashi2208]

I realise that you have a lot going on symptom-wise apart from CFS/ME. About 25 yrs ago I had ME for 4 yrs following some sort of Virus. Weird though it may sound I'm sure that Hatha Yoga cured me. During the period in which I started to feel better I could feel an 'attack' coming on and could stop it immediately with a downward dog pose. I hesitated before posting this reply because I know it sounds a bit new-agey but after googling 'CFS and Hatha Yoga' I felt emboldened.

yogajournal.com/lifestyle/r...

I wish you best of luck . . . which I have to say probably started with finding this forum.

[Hidden in reply to dashi2208]

I'm really, really, happy for you that you're ME was cured. That's interesting about you doing the Hatha yoga, yoga is one of the few things that helps me, I can only do gentle forms of it, I do find meditation helpful too. Thanks for the article, I'll have a look.

Thanks for your reply, yes I think this forum is good.

[dashi2208 in reply to Hidden]

Hi, funnily enough when I sent you my reply I hadn't fully read the article which I now have and interestingly it mentions that inversions seem to be the most beneficial posture . . . as I found myself with the Dog Pose.

[Hidden in reply to dashi2208]

That's really interesting isn't it. I wonder if it's to do with blood flow getting to head? I find child pose very nice.

How often did you do downward dog?

[dashi2208 in reply to Hidden]

It could be blood flow . . I got the feeling it was to do with something along the lines of unblocking/releasing energy flow. Hatha Yoga is invigorating in a most calm and gentle way. I went to a class once a week and if I remember rightly it was within a couple of months that the ME all but disappeared. I was lucky in that I had a good teacher and we would only do a small number of postures but hold them for quite long periods. Perhaps that's the key . .?

[dashi2208 in reply to Hidden]

p.s Meditation is a whole other thing and something I've studied in depth for the last 20yrs. Look into Vedanta Philosophy if you're curious.

[Hidden in reply to dashi2208]

That's interesting isn't it. Focus on the breath whilst in the posture likely does something too.

I'll have a look at Vedanta.

[dashi2208 in reply to Hidden]

good. Advaita Vedanta in particular. Next time you meditate and you're watching your thoughts ask yourself . . . who/what is it that is seeing them? Let me know how you get on. From my limited experience this is the path to 'Self' realisation and so called enlightenment. If that's what floats your boat.

[Hidden in reply to dashi2208]

I'll give it a go. Not sure what'll happen.

[dashi2208 in reply to Hidden]

Have a look at Rupert Spira on YouTube. Eloquent, articulate and completely immersed in this subject. It might not be for you . . . if it is . . you'll love it.

[Hidden in reply to dashi2208]

I'll have a look at that. Thanks.

[dashi2208]

p.s I haven't looked to far myself but there seems to be quite a lot online about Yoga and CFS. As i said before . . . it was Hatha (I believe to be the most gentle form) Yoga that I practiced.

[Hidden in reply to dashi2208]

Thanks for that. I'll have a look.