Thyroid UK
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Very low ferritin level

Hello,

I’m new to the forum and this is my first post.

I have been on Levothyroxine 50 for some four years now. But I have been very poorly, exhausted, unhappy, unable to think properly etc.

I’ve pressured my GP to have some blood tests (she said my TSH are within norm). My serum Ferritin is at 5.3 ug/L.

I feel dizzy very often, out of breath, with huge brain fog and weak in body. Heavy menstruation, feeling like my body is very heavy, but I’m not overweight. I’m 41 and have one child who is 6.

Could I please have some kind advice on what to do to help myself. I kind of need to find out myself.. my GP said “diet doesn’t mattet and.. Hypothyroidism and Hashimoto’s are treated same way so we don’t need to know what you have”.. which was not a good sign.

A note: I’ve not eaten meat for many years, but I eat fish. If necessary I am ready to eat meat again. Throughout the last years I have been addicted to black coffee, often drinking 5 or over cups a day. I have stopped a month ago entirely.

With all best wishes and many thanks for any help and advice.

Magdalena

13 Replies
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Would you be able to post all your vitamin results along with the lab ranges and any recent thyroid test results? Lab ranges vary so we need them to interpret results and give good advice. Without the lab range I can't be sure but if in the UK then usually your ferritin result would be terribly low.

It's true that hypothyroidism is treated the same way in the NHS whether autoimmune in derivation or not but this is not very helpful for the patient because if you have autoimmune thyroid disease then it can predispose you to develop other autoimmune antibodies. Recent thinking suggests that adopting a diet that helps to prevent inflammation is helpful for people with autoimmune antibodies so it would be helpful to know if you have thyroid antibodies. There is quite a lot you can do to improve your condition. For example, improve gut function through nutrition.

If you have thyroid antibodies and especially if undermedicated you will likely suffer from nutritional deficiencies as it's very common. Your doctor is not very helpful considering you are trying to help yourself and find some answers.

Why has your doctor not treated your low ferritin level? Have you had a full iron panel done because if not then your doctor needs to do one and you will likely need to get an urgent referral to an haematologist for an iron infusion if iron levels are low.

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Thank you so much for taking your time to reply.

I have been on the same dose of Levothyroxine 50 since my problems stated, so some 4years now. I am in UK and get retested every half year. I just had the retesting two weeks ago and my GP said the TSH levels are “in norm”, but I haven’t got the results.

My other tests are:

Total White Cell count: 4.7 10*9/L (4.0-11.0)

RBC count: 3.97 10*12/L (3.50-5.50)

Haemoglobin estimation:100.0g/L (120.0-150.0)

Haematocrit: 0.32 L/L (0.33-0.50)

MCV: 79.5 fL (80.0-100.0)

MCH: 25.0 pg (27.0-34.0)

MCHC: 315.0 g/L (315.0-345.0)

RBC distribution width: 16.6% (8.0-16.0)

Platelet count: 183 10*9/L (140-400)

Neutrophil count: 3.0 10*9/L (2.0-8.0)

Lymphocyte count: 1.0 10*9 /L (1.0-4.0)

Monocyte count: 0.5 10*9 /L (0.1-1.0)

Eosinophil count: 0.2 10*9/L (0.0-0.4)

Basophil count: 0.0 10*9/L (0.0-0.3)

Serum vitamin B12: 219 ng/L (145-914)

Serum folate: 6.83 ug/L (3.00-20.00)

Serrum ferritin: 5.3 ug/L (11.0-307.0)

Serum free T4 levek 10.3 pmol/L (7.7-20.6)

Serum TSH level: 1.06 mIU/L (0.30-4.80)

I have booked an appointemnt to follow up these tests, but with the GP I need to pressure her into everything, so I kind of need to know what to ask of her. She believes I should not be having any issues as my TSH is within norm.

Would these results be telling you anything I might be able to follow up? Any other tests I might need to be asking for?

Many thanks again for your kind reply!

1 like
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Many of those symptoms are ones of anaemia. 50mcg is quite a low dose of Levo, often just a starter dose, then after 6-8 weeks and thyroid testing, is often raised.

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Hello and thankyou for your kind reply! I have been on this dose since my problems started some 4 years ago and the TSH levels seem to be in “norm” each time I have a retest (every 6months).

Reply

You are likely under medicated, but due to low vitamin levels TSH is low so GP probably only looking at that

50mcgs is only standard starter dose and should be retested after 6 weeks and dose increased by 25mcgs steps until TSH is around one (many patients need it slightly under one - typically 0.2 to 1.0)

Your ferritin is dire. I think your iron panel show you are Anaemic

SeasideSusie or humanbean are iron expert

You will need daily iron supplements and/or iron infusion. Should be referred to haematology

B12 looks very low. You should request testing for Pernicious Anaemia before starting B12 injections. Or if GP won't agree very likely B12 sublingual lozenges and good vitamin B complex will help

There's no vitamin D test. Likely too low - ask GP to test

Do you now if you have ever had thyroid antibodies tested? If so were they high?

If not tested request they are

High thyroid antibodies give diagnosis of cause of hypothyroid as Hashimoto's also called autoimmune thyroid disease

Low vitamins are common especially if under medicated

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Nice guidelines saying how to initiate treatment and increase. Note that it clear states most patients require between 100mcg and 200mcg of Levothyroxine

cks.nice.org.uk/hypothyroid...

When significantly under medicated for a long time TSH tends to lower. As there is over reliance on only looking st a TSH and not whole picture many patients remain very under medicated with low vitamin levels as direct result

Thyroid UK are campaigning hard to improve guidelines for GP's. Many have little idea how to treat this complex disease

Typical post with Low vitamins due to under medication and detailed supplements advice on how to improve

healthunlocked.com/thyroidu...

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Hello. Many many thanks for all this information. You are very kind to take your time to write.

I will read the links and educate myself (a bit hard with all the brain fog) prior to seeing my GP next week, who is indeed appearing undereducated in this field. I had to really pressure her into running these tests.

I so hope there is a way of getting my body into a better state.

Once again, thank you for your help!!

2 likes
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RBC distribution width: 16.6% (8.0-16.0) Your Red Blood Cell distribution width is slightly over range and indicates some kind of anaemia and I'm not sure whether it's related to iron or B12 or both so ask your doctor.

Your ferritin is clearly much too low and below range. Ferritin is best around 70 or mid-range and so you need to ask your doctor for treatment for iron deficiency and probably a referral to haematology.

Although B12 is in range, its very low. Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

You can help raise your iron level by a maximum 200g per week of liver, no more, due to its high Vit A content, and include lots of iron rich foods in your diet, weblink posted by SeasideSusie below.

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

Helping iron levels with diet - post on HealthUnlocked.

healthunlocked.com/thyroidu...

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

Iron results indications

rt3-adrenals.org/Iron_test_...

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Hello and many many thanks for all these links. I will read them gradually. My doctor said I kept loosing my iron through heavy periods and is now looking into reasons for it. Lets hope he finds the cause!

Thank you for the liver warning! I had no idea. Will keep it within limits.. I'm not keen on eating meat at all in fact.

Sending my best wishes, Magdalena

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I was like this for years when I was diagnosed with under active. I’ve creeped up and I’m now on 200mg a day. I feel exactly the same! Since then I have been disganosed with fibromyalgia, borderline lupus and endometriosis which has symptoms of fatigue, pain, heavy periods, memory issues, brain fog and poor concentration.

I pestered to have more tests done and to see a consultant which is when I got the fibro diagnosis. Keep pushing and you’ll get answers!

x

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Hello. Glad you got some answers! I will keep this in mind and will pressure for these tests if no answer comes up earlier. Thank you for your reply! With best wishes! /Magdalena

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Hi, I get really tired too sometimes even on 125mcg. I recently had a slump with what I needed my body to achieve. I tried taking iron which made my face look fresher and less worn but still wanted more from life. I was going to exercise classes and struggling to cycle home afterwards and didn't want to get out of bed the following days and looked really rough and tired. I had some B complex with B12 in the cupboard which I started to take and it made a huge difference in my energy levels. The next time I cycled home it was a breeze I'm not kidding, it was shocking at how more energised I felt. Like an idiot I added more classes and ended up doing nine hours worth of fitness classes in one week, Pilates, yoga, Zumba, fit ball, stretch and tone. I had the energy but rested for four days to recover, lol. Ill try not to do that again. So anyway you could try B complex with B12. I lost a whole stone in weight since January but continued to gain when taking levo only.

1 like
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Hello. It seems my B12 levels are ok. But I will keep my eye on them! Thank you for your reply and good luck with all your exercising.. sounds like you have far more energy than I could dream of! Best wishes! /Magdalena

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Hello and a big thank you to all of you for all this information. Also sorry for my late reply, but I was busy with the half-term.. so glad school is starting again :)

I have had some tests and also saw my GP. I will read through all your replies properly and will look into the tests which I've had to try to understand the processes.

From what my GP had said I have been loosing my iron through heavy menstruation and he will be trying to work out why it has been so. He said it could have been stress which have been causing it. There was actually an ongoing stressful issue throughout last year.

I have been put on 3xday iron tablets, for at least 3 months.

Once again many thankyous to all of you for taking your time to reply so informatively!

With all best wishes!

Magdalena

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