Appointment with Haemoglobin Consultant for abnormal iron

[Karen154]

Hello Good People, I'm back here again writing yet another post about my hellish experience with a nhs consultant!

This is my back ground: Abnormal thyroid and iron blood tests for four years. Scorching temperature in my hands. Very very low normal cortisol. Right leg and arm go number when I have a period which lasts for 1 day. I have 6 bald patches on my scalp, lost my eyebrows and lashes. Rapidly loosing my hearing and wearing hearing aids. Blood in my stools.

Under consultants for dermatology, endocrine, E.N.T and haemoglubin.

I've been taking liquid iron for 2 years which cripples my stomach and my iron is lower then it was when I started the supplement. My iron and ferritin got to high range normal so stopped the iron supplement.Within the space of two months my iron and serum transferrin dropped to below normal so started the supplement again. Current blood tests below:

Iron 13 range from 10 to 29

Transferrin 2.13 range 2.50 to 3.80

Ferritin 146 range 10 to 291.

So I asked the dr why did the levels drop below normal - answer was because the supplement was stopped. Told him all of the above amd concerns about my stomach and numbs limbs - he didn't pass comment but asked about my periods so told told him - replied with abnormal periods aren't his field - me,"Why have you asked me? Nothing back from him.

I asked why are my ferritin levels good but the iron is so low range normal- replied that he couldn't answer that.

Asked how to achieve normal transferrin levels - no answer but told me my iron is fine. I asked for a iron injection or transfusion.

He said, " Your not having that because you may need it again and when is it going to end".

My mouth was open in shock.

He asked what the dermatologist had said about my hair - me," He said while iron and thyroid is abnormal my hair will continue to fall out".

The haemoglubin dr replied, "If that's what he thinks then he can monitor your iron and arrange for the iron infusion". I told this arrogant toad, "That's not the dermologist job, its yours!"

I asked for answers which he didn't give. But he hoped I get the answers from someone. He laughed at me and I was discharged after my first appointment with investigation into the reason that I'm passing blood. None of my concerns have addressed.

I do intend to complain but how on earth can I get the nhs to treat me

Any ideas people.

Thanks for reading.

P.s my previous post shows hospital blood tests for cortisol and I will up date the post with my recent thyroid appointment which is much the same.

[MissGrace]

He laughed at you? FFS - he laughed at you? He needs sacking. Or slapping. 🤸🏿‍♀️🥛

[Karen154]

It really was appalling to be told my serum transferrin bloods are normal when in the abnormal column with no advise on how to get it to normal.

I asked should I stop taking iron and he advised he would write to my GP telling them to keep me on it despite the iron and ferritin going in opposite directions.

I also asked if it was nhs policy not to treat if is abnormal or a point in range.

He stated, "No its good practice. If we you have a iron infusion then you may need another one in a few months and where is it going to end." It doesn't appear to be in the patient interest for a hospital not to treat you on the bases that you will need more treatment.

I'm in West Lancashire but the hospital is a Merseyside post code. I would give the hospital name but I don't want my post blocked.

Many Thanks

[Karen154]

What a insulting b...h! We should be able to film our appointments and put the bad ones on u tube with out fear of legal action. Its that tjats unbelievable.

[Ruby1]

So sorry to hear you're having such health problems. My first thought is that it is sounds like maybe it's more than just a thyroid related problem.

I think your GP's job is not to know all the answers, but to know who to refer you to who has specialist knowledge in whichever area you need. They know a little about a lot of things, but not a lot about anything specific.

I suspect the iron transfusion thing means that they're treating the symptoms but not the root cause, and therefore yes you'll just keep needing more transfusions. Surely the blood in your stools is a major flag that something is not right in your digestive system? Has this never been followed up? I'm not at all medical by the way, I'm just going on my own experience below.

I had low iron when my thyroid problem was discovered. They tested my stools for blood - negative. I think mine was a result of heavy periods (possibly thyroid related) and being a blood donor every 6-9 months. A course of iron tablets set me back on track. Levo has sorted me ever since and I've stopped giving blood now, though I did a couple of times and it made me feel unwell. No more now!

Just re-read your reply further down... I think they are saying it is good practice to keep you on the iron supplements rather than let you get so low that you need a transfusion, which does make sense to me... keep it ticking along rather than it becoming a crisis. However I think I would still go back to my GP and say that you are worried that you continually need iron supplements and there is blood in your stools, is this indicative of some other problem?

Best of luck!

[Karen154 in reply to Ruby1]

Thank you thats a really good reply. It was the consultant i went to not the gp and my thyroid is never right but that consultant is just as bad.

Xx

[ChrisCh]

If you want a real eye opener to what’s going on please read all the iron articles on gotmag.org and join the magnesium advocacy group on Facebook.

Good luck.

[Nikkilps]

Karen,

Sorry about this ghastly appointment you had, it sounds dreadful. Just re your iron levels, as you know yours are sub optimal - as your serum iron levels rise so should your transferrin saturation level it won’t while your serum iron remains low. You describe having blood in your stool but no mention of a gastroenterologist - the bleeding out from this will be the cause of your low iron and if not already then the cause of having blood in your stools really needs investigating! Once your iron levels have settled some of your other symptoms may begin to settle - either way hope this helps!

Nikki

[vocalEK in reply to Nikkilps]

Absolutely. None of the doctors connected the dots. Low iron. Blood in stools. Hello? medlineplus.gov/celiacdisea...

[Karen154 in reply to Nikkilps]

Hi, thanks for you reply. As i said i expected more. Interesting thing about the serum transferrin is that this has been dropping as my iron had been rising in the previous 12 months so must be something more.The consultant said it was due to there being enough ferritin. Asked how to get it back in normal range but no answer.

I would have expected all the iron studies to be in mid normal range with ferritin at such a good level.

[Nikkilps in reply to Karen154]

Hi Karen,

It’s true that low ferritin can cause low transferrin I’ve also only recently pulled out of the same situation myself normal iron low ferritin/ transferrin mch and mchc you might like to get the latter day values for yourself also. I’m pretty sure transferrin is affected by certain diseases and inflammation I’ll check and get back to you. If you don’t have a GI leading your care I’d look into seeing one as well, there are several disease processes GI wise that can cause bleeding as you know!

N :-))

[Nikkilps in reply to Karen154]

Sorry Karen I meant normal ferritin low iron!

[Karen154 in reply to Nikkilps]

Lol no problem. Is your iron normal now. If so how did you sort it out.

[Karen154]

Thank you for your reply and yes o expected more from him but he discharged me with no further investigation.

Xxx

[humanbean]

What colour is the blood in your faeces?

Is it bright red - the same colour you would see with fresh blood from a cut finger?

Is it a little bit darker? Is it maroon? Is it very, very dark red or black? Does it look like coffee grounds?

If the blood you see is the colour of fresh blood then you probably have piles. If this is the case they may be unpleasant but they are unlikely to be the cause (or the sole cause) of your iron problems.

If the blood is not fresh i.e. it is darker than fresh blood, then it suggests that your blood has been partly or completely digested, and the cause of the bleeding is somewhere in your bowel, intestines or stomach. The darker it is the higher up your digestive tract the problem originated. This kind of blood loss is very likely to be a cause or a contributory factor to your low iron.

There are probably dozens of causes of partly or completely digested blood in the faeces.

One reason for reasonably good ferritin and low iron is anaemia of chronic disease (ACD). Be aware that you can have ACD + some other issue that affects iron levels (e.g. B12 deficiency). If you have more than one condition then disentangling what is going on can take ages.

irondisorders.org/Websites/...

irondisorders.org/anemia-of...

See page 8 in this link : irondisorders.org/Websites/...

I can empathise with you regarding the blood in your poo. I had what was eventually diagnosed as "a giant polyp". I was seen by three different NHS hospitals over three and a half years before it was found and removed. I suffered with so much chest pain as a result of either catastrophically low iron and/or low blood volume as a result that I think I must have been very close to developing heart failure. I had to treat my own iron depletion afterwards as well. It took me nearly two years of taking prescription-strength iron supplements which I bought myself to get my ferritin to mid-range. Going gluten-free helped but I still struggle to hold on to iron even though I no longer have a bleed, so I have to take a maintenance dose all the time.

The NHS does some things well, allegedly, but it never seems to apply to me - I just come across incompetence and/or sadism over and over again.

[Karen154]

So sorry to hear your problems. Surprised your gp didnt try to help with a prescription. Pretty poor really.

Your not alone. Neither myself or any member of my family have had a good experience with the nhs.

I started with stomach problems due to liquid iron two years ago. I do get piles also my bowel rips because i get that constipated due to the iron but that is a fresh coating of blood. My stools have also been black, black green due to iron. Went gluten free and some of the hair loss calmed down but my stools started to have a yellow tint due to diet.

However I do pass red looking stools and i do believe this is blood from my gut.

Dispute having abnormal thyroid bloods my endocrine consultant it is nothing to do with the thyroid (he is another story) but he has tested me for autoimmune, celic, connective tissues disease and a few other tests which were all midrange normal although i am concerned about the cortisol results.

So I was hoping for a iron infusion and a referral to gastric.

[humanbean in reply to Karen154]

Has anyone given you a colonoscopy?

Have you ever had a faecal occult blood test (a test that looks for blood in faeces)? The faecal occult blood test is not a good test - it is much too easy to get a false negative or a false positive, but it is probably a lot easier to get doctors to agree to it than a colonoscopy. For some info on how to get the most accurate results :

healthunlocked.com/thyroidu....

[Karen154 in reply to humanbean]

No, found if i dont ask i dont get. Thanks for info i'll check it out. X

[humanbean in reply to Karen154]

If you have a rectal bleed a colonoscopy is an absolutely essential procedure, so ask for one.

I'm the same as you - I've discovered that if I don't ask I don't get.