Is 10+ years of elevated thyroid antibodies wit... - Thyroid UK

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Is 10+ years of elevated thyroid antibodies with normal t3/t4 harmful?

jenny999 profile image
41 Replies

Hello everyone, I’ve been lurking in these threads for a while now and figured I would post my recent results [below] in case anybody has advice for me. Over 10 years ago, thyroid antibodies were detected during one of my routine blood tests (I was around 25 at the time, 35 now). Since that time, I’ve been tested many times, and my antibodies are always above range, while my tsh/t3/t4 are always within “optimal” range.

I’m not sure I’ve had an official diagnosis of Hashimoto’s, but I do remember my doctor at time (in the US -- I am now in the UK) suggesting it. Aside from that, I was discovered to have iron deficiency anemia around 20 years ago. In the last 3 years, my vitamin levels have also generally been below range for vitamin D.

Symptoms-wise, I have suffered from what I now believe to be low grade depression over the last 10 years, alongside difficulty maintaining my weight (I gain easily & find it hard to lose), memory issues, slow digestion, itchy skin, and in recent years, joint pains and bouts of anxiety.

I’ve tried to cut out gluten in the past, but stopped as I didn’t notice any differences in how I felt. I avoid processed soy as much as possible. I currently supplement (albeit inconsistently) with iron, folate + b12, vitamin d, & Brazil nuts lately to try to get some selenium. I’ve just gotten back my latest test results for the advanced thyroid panel through MediChecks and mainly want to make sure there’s nothing I should be doing that I’m not doing based on the results. It just feels wrong to me to have had such high antibodies for so long without requiring any action on my part.

Ferritin: 4.87 ug/L (13 - 150) — low

Folate - Serum: 4.93 ug/L (> 3.89)

Vitamin B12 - Active: 98.8 pmol/L (>37.5)

Vitamin D: 36.4 nmol/L (50-175) — low

TSH: 1.93 mIU/L (0.27 - 4.2)

Free T3: 4.28 pmol/L (3.1 - 6.8)

Free Thyroxine: 13.5 pmol/L (12 - 22)

Thyroglobulin Antibodies: 651 kIU/L (< 115) — high

Thyroid Peroxidase Antibodies: 274 kIU/L (< 34) — high

CRP HS: 0.91 mg/L (< 5 R)

Any thoughts or recommendations would be greatly appreciated! Apologies if I’ve formatted anything incorrectly—please let me know & I’ll edit accordingly. Thanks in advance!

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SlowDragon profile image
SlowDragonAdministrator

Vitamins are extremely low because of Hashimoto’s

Ft4 is very low. Ft3 struggling. TSH higher than average

Suggest you work hard on improving low vitamin levels for next 2-3 months

Then retest, likely to either see improvement in thyroid levels because vitamins are better, or rise in TSH so you can get started on levothyroxine

Ferritin is extremely low, so low that you likely need iron infusion. Certainly iron supplements

First step is to get full iron panel test for anaemia via GP

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

humanbean may comment too

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D obviously needs improving and GP should prescribe 1600iu everyday for 6 months

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

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

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

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help maintain B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Also consider adding a selenium supplement

jenny999 profile image
jenny999 in reply toSlowDragon

Thank you for all of the info! I think I may need to find a new GP as mine refuses to test for anything and is happy with my levels & only prescribes iron. I may have to find a private doctor to convince anyone that my thyroid levels are not normal for somebody with Hashimito’s. I did already request the doctors list from TUK, but have been unsure whether I should invest my savings in this since I’ve always been told my numbers are in range. I think I will have a read of all of your links to try to improve what I can while I think about where to go next.

Thanks again!

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

Work on improving low vitamin levels

Retest thyroid and vitamin levels in 2-3 months

Low vitamin levels frequently “hide” just how hypothyroid a patient may be

Your ferritin is extraordinarily low

Are you vegetarian or vegan ?

Heavy periods?

jenny999 profile image
jenny999 in reply toSlowDragon

Ok, sounds like a plan!

I’m not vegetarian or vegan, but yes I do have very heavy periods. My doctors & gynos in the past have always accepted this as the reason for my anemia.

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

How anaemia can hide hypothyroidism....TSH ceases to work correctly

healthunlocked.com/thyroidu...

NWA6 profile image
NWA6 in reply tojenny999

Uh i so wish GP’s would stop blaming heavy periods on anaemia and say well that’s that. It’s just so bizarre what women have to put up with!! Your heavy periods are probably very much linked to being hypothyroid and low in Vits and minerals. Try and improve them in the next 3mths and then push for Levo because your FT4/3 are really awful and no wonde you feel like pants. When you treat your hypo you’re periods won’t be so heavy. It’s all linked.

jenny999 profile image
jenny999 in reply toNWA6

Thank you, I’ll do my best! It helps to know I’m not just imagining anything and feel like I have a plan of action

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

Hypothyroidism usually causes low stomach acid and low vitamins are as direct result of this

Being hypothyroid also tends to lead to heavy periods, causing anaemia

Anaemia tends to result in heavy periods

Vicious circle

It will take many many months continuously working on improving low ferritin, its not a quick fix

Regularly retesting full iron panel to check iron is not going too high

helvella profile image
helvellaAdministrator in reply tojenny999

Even if it were the reason, the issue needs to be addressed!

I suggest considering trying heme based supplements - along with standard things like ferrous fumarate. They are absorbed by different pathways and both can be absorbed at once.

However, ferritin alone is not sufficient to full understand your iron status. You could do with a full iron panel. And a Complete Blood Count.

jenny999 profile image
jenny999 in reply tohelvella

I have booked a consultation through my private healthcare to see if they'll order me more thorough iron tests. I did do a more complete iron panel this June and the numbers were:

Total iron-binding capacity (TIBC): 78.85 umol/L (41-77) — high

Unsaturated iron binding capacity (UIBC): 71.7 umol/L (24.2-70.1) — abnormal

Ferritin: 7.06 ug/L (44-150) — low

Iron: 7.15 umol/L (5.8-34.5)

Transferrin saturation: 9.07% (20-50) — low

I'll try to do them again, though my NHS GP's advice has always been just to supplement with iron as I have been. Unfortunately, any testing my GP has done prior to when I started my own testing -- the office has refused to send me the results or even tell me them verbally, and only give me the option of going in to pay for a printed copy.

helvella profile image
helvellaAdministrator in reply tojenny999

You just might find a tiny bit of something in this document - but it is both a bit old and links to some UK sources which might not work for you.

dropbox.com/s/4d885frbic4z8...

My emphasis is to keep going with multiple iron sources, if possible.

jenny999 profile image
jenny999 in reply tohelvella

Thank you! That is very helpful, I'll look into the alternative sources

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

These remain very poor

humanbean is our iron and ferritin expert

Suggest you read many of her detailed replies to people re low iron and ferritin

jenny999 profile image
jenny999 in reply toSlowDragon

Thank you, I’ll have a look.

I just did another full iron test through my GP which I should be having a follow up on in the coming week.

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

Unfortunately, any testing my GP has done prior to when I started my own testing -- the office has refused to send me the results or even tell me them verbally, and only give me the option of going in to pay for a printed copy

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

They can not charge you either

Perhaps time to look for new GP surgery

jenny999 profile image
jenny999 in reply toSlowDragon

Last time I tried (granted that was probably 2 years back) they had refused to give me my results in an way other than paying for a print-out, but last week I called up & was able to be granted online access in addition to having all of my previous records shared with me! I can even already see the results of the tests posted yesterday. They are below:

FULL BLOOD COUNT

Total white blood count 8.6 10*9/L [4.0 - 11.0]

Haemoglobin concentration 97 g/L [115.0 - 165.0] Below low reference limit

Platelet count - observation 306 10*9/L [150.0 - 450.0]

Red blood cell count 4.54 10*12/L [3.5 - 5.5]

Haematocrit 0.340 ratio [0.37 - 0.47] Below low reference limit

Mean cell volume 74.6 fL [75.0 - 105.0] Below low reference limit

Mean cell haemoglobin level 21.3 pg [26.0 - 35.0] Below low reference limit

Mean cell haemoglobin concentration 286 g/L [290.0 - 350.0] Below low reference limit

Red blood cell distribution width 17.8 % [11.0 - 15.0] Above high reference limit

Neutrophil count 6.3 10*9/L [2.0 - 7.5]

Lymphocyte count 1.6 10*9/L [1.0 - 4.0]

Monocyte count - observation 0.4 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.2 10*9/L [0.0 - 0.4]

Basophil count 0.0 10*9/L [0.0 - 0.1]

Mean platelet volume 7.8 fL

Serum ferritin level 5 ug/L [15.0 - 250.0] Below low reference limit

Low Ferritin level consistent with iron deficiency

Serum TSH level 2.00 miu/L [0.35 - 4.78]

UREA, CREAT + ELECTROLYTES

Serum sodium level 140 mmol/L [133.0 - 146.0]

Serum potassium level 4.9 mmol/L [3.5 - 5.3]

Serum urea level 7.0 mmol/L [2.5 - 7.8]

Serum creatinine level 56 umol/L [49.0 - 90.0]

eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 mL/min [90.0 - 120.0]

Note eGFR now reported by EPI calculation.

Please multiply eGFR by 1.159 for African-

Caribbeans (not mixed race).

FULL BLOOD COUNT

Percentage hypochromic cells 62.6 %

Thank you for the links -- I think I called up my GP again after having seen similar advice/links posted across this forum.

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

Clearly still extremely low ferritin

Hopefully humanbean or SeasideSusie may comment on iron results

When was thyroid testing done?

Was thyroid test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

TSH is too high at 2

Obviously need TSH, Ft4 and Ft3 need testing together

Suggest you get tested privately soon

jenny999 profile image
jenny999 in reply toSlowDragon

The thyroid results at the top of this post were from 5 Jan this year (just 9 days before these latest iron ones). Yes they were done fasting and with no levothyroxine (as you noted below, I've not been prescribed it yet). My GP also did order thyroid tests alongside these iron ones as she didn't seem to want to know about the private ones, but those results haven't been posted online yet for me to see. I assume they will be similar to the ones a few weeks ago though, we'll see. Not sure they will include Ft3 or not though

jenny999 profile image
jenny999 in reply tojenny999

Oh Actually just realized that it was just TSH in the test, so I guess those are the full results. Either way, the previous ones are very recent & contain TSH, Ft4, & Ft3 together so presumably I don't need another full test?

SlowDragon profile image
SlowDragonAdministrator

So with TSH at 2 from GP and these medichecks results it’s clear that you need 25mcg dose increase in levothyroxine

TSH: 1.93 mIU/L (0.27 - 4.2)

Free T3: 4.28 pmol/L (3.1 - 6.8)

Free Thyroxine: 13.5 pmol/L (12 - 22)

Ft4 is only 15% through range

Ft3 is 31% through range

Looking for both to be roughly 60% or higher

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

SlowDragon profile image
SlowDragonAdministrator

Just realised......I don’t think you are on any levothyroxine

No wonder you are struggling

Getting ferritin and folate, B12 and vitamin D improved to OPTIMAL Levels should increase TSH so that you can get diagnosed and started on levothyroxine

jenny999 profile image
jenny999 in reply toSlowDragon

Yea, this is exactly it -- hoping getting those right over the next few months will help!

SlowDragon profile image
SlowDragonAdministrator in reply tojenny999

Work on improving all four vitamins to optimal levels

Strictly gluten free diet might help maintain vitamins at higher levels, but your still going to need significant levels of supplements, especially to improve dire ferritin

Get FULL thyroid and vitamin testing done in say 2-4 months

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

If testing iron and ferritin stop iron supplements a week before testing

Always do all thyroid tests as early as possible in morning before eating or drinking anything other than water

Only do private test early Monday or Tuesday morning and post back via 24 hour tracked postal service

humanbean profile image
humanbean

Total iron-binding capacity (TIBC): 78.85 umol/L (41-77) — high

Unsaturated iron binding capacity (UIBC): 71.7 umol/L (24.2-70.1) — abnormal

Ferritin: 7.06 ug/L (44-150) — low

Iron: 7.15 umol/L (5.8-34.5)

Transferrin saturation: 9.07% (20-50) — low

Haemoglobin concentration 97 g/L [115.0 - 165.0] Below low reference limit

Mean cell volume 74.6 fL [75.0 - 105.0] Below low reference limit

...

Your iron-related results are appalling. Expecting you to fix your anaemia using just iron pills seems to be extreme sadism on the part of your doctors.

What iron pills do you take, at what dose, and how often? What investigations and other treatments have your doctors tried?

You are clearly extremely anaemic. According to the World Health Organisation anaemia is defined as a haemoglobin level below 120 g/L. Yours is 97 g/L.

who.int/vmnis/indicators/ha...

If you were to improve your iron levels to optimal you would need results similar to those given in this link :

rt3-adrenals.org/Iron_test_...

More specifically...

Serum Iron - optimal given the reference range from your test is 21.6 - 25.9.

TIBC and UIBC - Very roughly, these should be mid-range.

Transferrin saturation : Needs to be 35% - 45%.

Ferritin : Optimal given the reference range from your test is mid-range or a bit over i.e. about 82 - 120 or 82 - 130.

As you can see you have a long way to go.

...

I struggle to absorb iron, and have been anaemic or iron deficient most of my life. Doctors would, very occasionally, give me iron pills for 2 or 3 months then would consider that must be enough - they almost never re-tested, and within another month or two I would probably be iron deficient again. But it might be years before I got another prescription again. So I can empathise with you completely.

To improve my own iron and ferritin I had to start treating and testing myself. I discovered that prescription-strength iron supplements prescribed by doctors can be bought without prescription from pharmacies with the permission of a pharmacist. Hallelujah! As soon as I discovered that, I stopped relying on doctors and treated myself. It took me nearly two years to get my ferritin up to optimal, although my serum iron was still very low. I've been taking iron pills for over 7 years now. Once I got my ferritin to optimal I started experimenting to find my maintenance dose. I now take 1 iron tablet 5 days a week, and it seems to keep my levels where I want them.

One thing I had going for me compared to you, is that I am post-menopausal so I no longer lose blood/iron/ferritin in periods. You look young in your avatar so if that is you then I'm guessing you might expect to have periods for a good few years yet, and that will make raising iron much harder for you than it was for me - and it took me nearly two years. But one bit of good news is that women lose more blood in periods when they are anaemic than when their iron levels are good, so if you can get your iron and ferritin up a little bit it might actually reduce your bleeding. I've never investigated why this is, but it is a common observation.

I think helvella 's suggestion of taking different kinds of iron is one you really must try to follow if you can. But the types of supplement you would need (other than iron salts like ferrous fumarate) are difficult to source in the UK and they are expensive. People who take ferritin, for example, often have to import it from the US, I think.

...

Have you ever been given an iron transfusion? They are described here and have to be given in a hospital :

uhb.nhs.uk/Downloads/pdf/Pi...

For more medical information, these links are useful :

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drug/ferric...

medicines.org.uk/emc/files/...

medicines.org.uk/emc/produc...

There are other injectable irons used for seriously anaemic people, but they all seem to be fairly similar to my untrained eyes.

If there are reasons why you are not suitable for iron transfusion then another option might be a blood transfusion. But I'm not a doctor, and I don't know if this is ever done in place of an iron transfusion.

...

Helvella lists iron salts, heme/haem, and ferritin as different ways of taking iron that don't interfere with each other.

Iron salts are easy - they are the supplements that doctors prescribe and can be bought without prescription. They are ferrous fumarate, ferrous sulfate, and ferrous gluconate. For dosing information the British National Formulary (BNF) is the best and most reliable source that I know of. Doctors use it. You need to know the therapeutic dose, and you will need the maximum, if you can tolerate it.

bnf.nice.org.uk/drug/ferrou...

bnf.nice.org.uk/drug/ferrou...

bnf.nice.org.uk/drug/ferrou...

I used ferrous fumarate 210mg, 1 tablet, three times a day to raise my own iron and ferritin. It comes in packets of 84 tablets which will last 28 days when taken at maximum dose. It isn't hugely expensive. It is suggested that people take it on an empty stomach, but I couldn't tolerate that and had to take it with food.

Taking any form of iron supplement with vitamin C will (allegedly) help with absorbing iron.

...

I have not found haem supplements available in the UK. Haem iron usually comes from meat, such as liver. For more food sources of iron see these links :

dailyiron.net/

apjcn.nhri.org.tw/server/in...

Other sources of haem iron are kidneys, liver pâté and black pudding.

Liver and kidneys can be put into a blender or chopped up finely then used as an ingredient in stews and casseroles if you are put off by the look of it.

...

Ferritin supplements are available in the UK, but they aren't cheap, and I only know of one. Always shop around. The one I've given below costs £27 for 60 on Amazon and under £12 on another site, but don't forget delivery charges. If you buy from abroad there may be import duties, admin charges and VAT to pay which can all add substantially to the cost. It is also worth asking for feedback from the forum on any site you use to see if anyone has good/bad experiences of the site.

amazon.co.uk/Crr-Ferritin-B...

When I googled ferritin supplements one that was returned was a simple iron salts supplement that people can get from supermarkets for a third of the price - so buyer beware.

humanbean profile image
humanbean in reply tohumanbean

Have you been prescribed Tranexamic acid ? It is supposed to reduce bleeding, but I have no idea how effective it is, how safe it is, and whether it would be suitable for you.

bnf.nice.org.uk/drug/tranex...

drugs.com/mtm/tranexamic-ac...

But if it is suitable for people with very heavy periods then it would be worth discussing it with your doctor.

jenny999 profile image
jenny999 in reply tohumanbean

I was apparently prescribed this in 2016 "Tranexamic acid 500mg tablets - take two 3 times/day for up to four days" but I don't recall ever knowing I had been prescribed it. I will ask my GP later this week. Thank you for the suggestion

humanbean profile image
humanbean in reply tohumanbean

I've just discovered one reason why doctors don't treat iron deficiency very often these days, or don't pay much attention to it.

The NHS has only gone and moved the bloody goalposts again.

According to this link :

nhs.uk/conditions/iron-defi...

Anaemia will only be diagnosed if Red Blood Cell Count is below range.

In the past doctors have usually diagnosed anaemia by checking serum iron or ferritin or haemoglobin. It seems that doctors will do anything to reduce the chance that they have to spend money, even on something as simple and cheap as iron supplements.

So according to the above link you aren't suffering from iron deficiency anaemia because your RBC is within range. Can you believe it? It's totally absurd! :O

jenny999 profile image
jenny999 in reply tohumanbean

Thank you for all of the information--it's much appreciated!

I had been going through the cycle of taking iron tablets until my levels were within range, then only taking them during my period until I was tested again and it would always show me anemic again. I'd been taking 1/day of a tablet from the US called "Slow Fe" for approx. 10 years on and off. According to Amazon, "Slow Fe contains 45 mg of elemental iron in each tablet, which is equivalent to 142 mg of ferrous sulfate." -- so I guess that counts as 45mg/day? I'm not sure which number to count there.

I've just looked in my NHS notes and it does show that in 2015 I was prescribed Ferrous fumarate 210mg tablets, 1 tablet 3 times/day. I see that in 2017 some of the levels in my iron blood tests were restored to just within the the lower level of the reference limit, and that year is the year that nobody followed up with me after my tests, and when I called I was told my results were all normal -- which I found very odd! I was wanting to get a copy of my results but they basically told me they couldn't tell me any results over the phone, and I would have to come in and pay for a print out if I wanted anything more.

Having now gotten access to my online history I can see that these results weren't great:

Test result - Full blood count;DIFF COUNT Report, Satisfactory, No Further Action

Red blood cell count (426..) 4.55 10^12/L [3.8 - 5.8] - Fasting

Total white blood count (XaIdY) 7.3 10^9/L [4 - 11] - Fasting

Full blood count (424..) - Fasting

Monocyte count - observation (42N..) 0.5 10^9/L [0.2 - 1.5] - Fasting

Lymphocyte count (42M..) 1.2 10^9/L [1 - 4.8] - Fasting

Neutrophil count (42J..) 5.5 10^9/L [1.8 - 7.7] - Fasting

Basophil count (42L..) 0 10^9/L [0 - 0.2] - Fasting

Eosinophil count - observation (42K..) 0.1 10^9/L [0 - 0.5] - Fasting

Platelet count - observation (42P..) 278 10^9/L [140 - 400] - Fasting

Mean cell volume (42A..) 80.4 fL [80 - 98] - Fasting

Haematocrit (X76tb) 0.37 [0.37 - 0.47] - Fasting

Haemoglobin concentration (Xa96v) 117 g/L [115 - 165] - Fasting

Mean cell haemoglobin concentration (429..) 32 g/dL [31.5 - 35.9] - Fasting

Mean cell haemoglobin level (XE2pb) 25.7 pg [27 - 33]; Below low reference limit; Fasting

Red blood cell distribution width (XE2mO) 15.8 % [11 - 15]; Above high reference limit; Fasting

I had always been made to feel like some of my low numbers weren't that big of a deal and it was good enough to have them only just within the lower end of the reference since I knew it was worse to have high iron than low iron, so I kind of always just took them at their word and didn't think I was being largely harmed. I decided to just do my own tests from then on since they refused to give my my test results and decided to keep my numbers as close as possible to the lower end of the normal ranges as my GPs had been doing to manage my anemia in the past. I can see now that this has probably been pretty harmful to my health over the last 20 years & wish I'd taken it more seriously from the outset & investigated more thoroughly!

I do see reference to "Tranexamic acid 500mg tablets - take two 3 times/day for up to four days" in my GP notes from 2016! But I'm not quite sure I ever knew I had that prescription as it's followed by "Failed encounter - no answer when rang back". I will make sure to ask my GP about it in my follow up call this week! The only other treatment that has been recommended for me has been birth control pills for making my periods less heavy and painful, but I tried them around 9 years back and felt so bad about 2 days in that I decided it wasn't worth it (plus I wasn't 100% convinced of their safety at the time, and didn't need the contraceptive). My gynaecologist at the time (in the US) had also ordered me an ultrasound prior to that to rule out fibroids.

As far as the amount of iron i'm supplementing with, I'm embarrassed to say that I'd kind of stopped really taking my supplements consistently at the start of Covid last year. Instead of using my normal tablets from the US, I started buying iron tablets from amazon without paying much attention to how much iron was actually in them. Looking back, I'd been taking only 20mg/day during my periods (Solgar Gentle Iron). After reading all of the information provided on this forum, I can see how that dosage wouldn't make a dent. I don't think I ever really understood the gravity of how low my levels were since I've been anemic for so long--it just felt like my natural state.

Around a month ago I started consistently supplementing daily with the Solgar iron instead of just during my periods. After reading helvella 's posts I've also bought a few different types of iron as well:

- OptiFer F (1 daily =18mg iron, 400mg Folic Acid) -- which apparently "is a heme iron tablet supplement for pregnancy and planned pregnancy. " I hadn't known it was for this purpose, but I would like to be pregnant in the not-too-distant future so hopefully this won't hurt? It was available on Amazon right away so I figured I would try it while I waited for the others -- I have been taking 1/day

- Terry Naturally Liver Fractions (2 daily = 5mg ferrous bisglycinate chelate, 1,300 mg liver fractions, 1,000mg B12) -- I haven't started taking this yet

- Cardiovascular Research Ferritin (1 = 5mg iron "from bovine spleen and as iron aspartame") -- I've taken only 1 of these so far

I'm kind of confused now since these tablets all seem to be quite low-dose given what I should be taking is 210mg 3x/day. This last 2 week I've been taking 1 Solgar tablet in the morning (25mg) and 1 OptiFer in the afternoon (18mg iron) -- which sounds like I've only been taking 48mg daily instead of...630mg daily! What a massive fail on my part. It sounds like I should try to go to the pharmacist and get the 210mg tablets again (in fact, my GP will probably prescribe them to me later this week).

Sorry for the long-winded post, I feel so silly only just realizing how severely I've been under-treating my anemia after 20 being anemic since around the age of 16!

helvella profile image
helvellaAdministrator in reply tojenny999

There might be a tiny bit of information here:

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

dropbox.com/s/4d885frbic4z8...

jenny999 profile image
jenny999 in reply tohelvella

Thank you, I did read that the last time and it's what made me buy some alternative types of iron, but I hadn't properly looked at the "Dosing" section --- must've been information overload at the time.

So then if 210mg ferrous fumerate equals around 70g of elemental iron, would that mean that my previous prescription from my GP (from a few years back) of 1 tablet 3x/day means I should be aiming for around 210mg elemental iron total daily?

humanbean profile image
humanbean in reply tojenny999

That's what I took.

Ferrous fumarate 210mg, 1 tablet , three times a day contains (69 x 3)mg of iron which equals 207mg of pure iron.

This confuses a lot of people.

Ferrous Fumarate actually contains Carbon, Hydrogen, Iron and Oxygen.

One tablet of ferrous fumarate 210mg contains 69mg of iron. The rest of the weight is made up of the other parts of the molecule - the carbon, nitrogen and hydrogen.

The thing to look out for in any iron supplement is the weight of elemental iron i.e. the amount of pure iron.

The 207mg of iron in a maximum dose of ferrous fumarate 210mg should be considered to be a maximum dose of iron salts.

helvella profile image
helvellaAdministrator

Don't forget faggots!

Lora7again profile image
Lora7again in reply tohelvella

Yuk! I actually used make them when I worked in my Uncle's butchers shop many moons ago. I didn't eat them for many years after seeing what went into them.🤢

humanbean profile image
humanbean in reply tohelvella

I didn't know they were high in iron. I bought some a year or two ago just as an experiment. I liked them as a child, but not any more. :(

helvella profile image
helvellaAdministrator in reply tohumanbean

Well they do vary. The ones round here have liver in them.

jenny999 profile image
jenny999 in reply tohelvella

I have never been able to get liver down until I discovered Nando's chicken livers last year! But they have sadly taken them off their reduced Covid menu at the moment.

humanbean profile image
humanbean in reply tojenny999

You can buy chicken livers from Tesco if you want to try various ways of cooking them.

tesco.com/groceries/en-GB/p...

And they can be frozen.

jenny999 profile image
jenny999 in reply tohumanbean

Ohh nice, good find. I may try to recreate the recipe!

humanbean profile image
humanbean in reply tojenny999

Good luck. If your recipe fails you haven't wasted a huge amount of money, which is also good.

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