My low ferritin saga continues

[Rollercoaster44]

Following on from my post a few weeks ago healthunlocked.com/thyroidu...

- apologies for not posting results etc but ended up dealing with bit of a family crisis and then the GP surgery rang saying a doc wanted to discuss my blood results of mid-November!

I've now done a Medichecks iron panel and results are hopefully included in the history of test results attached. (done at 8.20am before meds and on an empty stomach - all supplements stopped 1 week before).

When the doctor rang this morning I was somewhat shocked as he didn't know why he was ringing me as he said no reason for the call was on the notes - I couldn't help with that as I hadn't raised the call either! He didn't ask if anything was wrong or how I was feeling - had a suspicion this was going to be a good conversation!

Anyway started chatting through my results from Nov and I queried why no iron supplements this time as my ferritin levels had dropped again. His response I'm sure will cause some amusement for all the wrong reasons - he said " low ferritin levels in the absence of low haemoglobin are of no clinical significance and do not require any action - we will only give supplements if haemoglobin is low i.e. anaemic". I challenged his response and asked why I was getting such inconsistent advice from the surgery regarding my ferritin levels and why had I been put on supplements twice before when my haemoglobin was normal, also that iron was needed for my thyroid - he just went silent and then said he didn't know why I had been given supplements previously - very helpful! I asked about an iron panel test and got a similar response of no NHS won't do that until your anaemic.

On a plus side, my TSH was just out of range on the low side but he didn't mention that!! He didn't want to discuss thyroid as he said he could comment on those results as was a locum.

Anyway latest Medichecks results hopefully attached. As latest Medichecks panel seems to suggest its really only ferritin that's the main issue at the moment I will continue on the low dose Better You Iron spray for another couple of months and see where it takes me. Any suggestions gratefully received. On a positive note at least it looks like I may have almost cracked the folate and B12 levels.

Huge thanks again to everyone in this forum for helping to save my sanity. Much more sense and advice is on here than will ever be obtained at my surgery.

[Rollercoaster44]

Iron and vitamin results hopefully attached

results

[WED2012 in reply to Rollercoaster44]

HiI have the same issues my hair has thinned and at one point I was falling asleep left right and centre. My ferritin is low and I had 2 iron infusions which raised it up and then slowly started dropping. Now supllement iron and make sure i eat lots of iron rich foods but it bearly makes any difference. I have the same thing with B12 and now I get injections prescribed to me by private Doctor from Poland. Its a constant battle and GP thinks I'm well.

I book double appt print some Nice quidlines and feel like I'm going to war. I have got some great advise from the great folks here and so far my Gp been listening to my thyroid plans but vitamins yeah we are on our own. Hope it gets better for you.

[SlowDragon Administrator]

Vitamin D has room for improvement to at least 80-100nmol

Iron and ferritin definitely room to improve

Are you vegetarian or vegan

Thyroid results

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you did this test?

FT4: 13.4 pmol/l (Range 7.9 - 20)

Ft4 only 45.45% through range

FT3: 5 pmol/l (Range 4 - 6.6)

Ft3 worse at only 38.46% through range

What thyroid replacement hormones are you taking

Levothyroxine?

How much and which brand

Many thyroid patients find they need Ft3 at least 60% through range minimum and often Ft4 at least 70-80% through range

[Rollercoaster44 in reply to SlowDragon]

Yep thyroid tests done around 8.30 / 9.00am at home on empty stomach etc home but 9.30 if at surgery. Last dose the morning before and any supplements stopped the week before. Not veggie or vegan. On levo only - 137.5 at the moment as GPs wont shift on that and i had to fight to not get it reduced to 125 again which i have outright refused. Vitamin D has become a bit odd - i doubled the dose about 10 weeks ago to 50ug but its not making much difference - i will finish the tub im on and go back to the cheap Tesco vit D tablets i was on originally which seem to work for me and add a separate k2.

[SlowDragon Administrator in reply to Rollercoaster44]

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

50ug vitamin D is only 2000iu

As you are under medicated for thyroid and it’s winter that’s not likely high enough dose

Levo dose

How much do you weigh in kilo

[Rollercoaster44 in reply to SlowDragon]

how much do i weigh?….ha ha..too much! 90.6 kg this morning!😀 ive tried the better you vit D spray and thats when my levels went down and hence gone back to capsules. I will increase again and keep everything crossed.

[TiggerMe Ambassador in reply to Rollercoaster44]

This might be useful... grassrootshealth.net/projec...

and this chat...

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Rollercoaster44]

so guidelines on dose by weight suggests you need next increase in Levo

90kg x 1.6mcg Levo per kilo per day = 144mcg per day

[Kimkat in reply to Rollercoaster44]

Isn’t it odd. What works for one doesn’t work for another. I use the VitD + K2 and B12 mouth spray by Betteryou and my levels shot up.

[Narwhal10]

Well Rollercoaster,

I will not comment on your blood results but just a few points. The receptionist or clerical staff rang you to tell you that a doctor wanted to speak to you about blood results from 6 weeks ago.

When the doctor rang they had no idea why they were calling you. Then he blagged a conversation with you. He was thinking on his feet and had absolutely no idea what was going on.

I do hope you get everything sorted.

[fiftyone]

my ferritin has been low for many months, though my haemoglobin is not affected. I cannot absorb iron through my stomach, neither B12 or zinc. I was feeling so very exhausted and my hair has greatly thinned. I had an iron infusion 2 weeks ago, but so far I am still feeling exhausted. Hair the same. Maybe it depends how you feel, as well as numbers, as to what doctors suggest. My doctor did tell me if ferritin keeps dropping it will eventually affect haemoglobin. Why do these flippin doctors wait 'til you feel ill before making corrections.

[Lottyplum]

Excuse My language - but pillocks anonymous comes to mind with that locum!