Thyroid UK

Feeling hopeless

Hi I am new and feeling very unwell and hopeless at the moment. My symptoms and problems are ongoing.

Results

Ferritin - 41 (30 - 400)

Vitamin D - 7.2 (25 - 175)

Serum folate - 1.6 (2.5 - 19.5)

Serum B12 - 181 (190 - 900)

Had bloods done in Sep 2017 with endo.

Ferritin - 3 (30 - 400)

Iron infusion given Oct 2017 as an emergency procedure

TSH - 0.02 (0.2 - 4.2)

Free T4 - 22.1 (12 - 22)

Symptoms are now headache, feeling cold and weak, shaky, confused, off balance, bone pain, chest pain, muscle twitches, shivery, pain in backs of legs as if I've pulled something. I'm literally pushing myself through everyday in that I go to work and make a living and can't afford to be off work sick, no idea what next to do. Taking 50mcg levo diagnosed hypothyroid 2012. Thanks in advance.

15 Replies
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What did Endo do about your extremely low vitamin D level? What has been prescribed and what are you taking? What has been done about B12 deficiency and folate deficiency? Has the Endo prescribed anything and has your GP recieved a letter from the Endo with your vitamin levels?

With that level of low B12 I would think you need to have investigations for intrinsic factor antibodies to rule out B12 deficiency.

What had been prescribe to follow up from the iron infusion?

If your Endo or GP has not contacted you, then you need to make an urgent appointment to see another GP in the practice and point out these results. See SeasideSusies advice about vitamin levels and take the information to your GP to ensure you get treated properly.

See one of SeasideSusie 's posts here on vitamin levels.

healthunlocked.com/thyroidu...

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Vitamin D loading dose, B12 nothing been done and nothing been done about folate. Intrinsic factor antibodies not been tested. Haematologist discharged me with no iron to take thanks

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Were you given a maintenance dose of Vitamin D after the loading doses and why did the Haematologist not recommend a maintenance dose of iron? Also, why didn't the Haematologist explore the low B12 and test for intrinsic factor antibodies? Your ferritin is too low for thyroid hormone to function effectively despite the iron infusion so you need to supplement until your iron is around 70 or mid-range and make sure you get blood tests to check levels every 3 or 4 months until stable.

It sounds like you have had half treatment and no follow on. You need to get an urgent appointment with your GP to insist on correct treatment and proper follow up.

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Thanks no maintenance dose for vit D and I don't know why no maintenance dose for iron was recommended or why B12 was low or test for intrinsic factor antibodies

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I would ask GP to organise maintenance doses and discuss getting intrinsic factor checked. Read SeasideSusies advice and tick off any symptoms of B12 deficiency to take to your GP. For example, feeling, 'off balance, shaky and confused'.

If GP will not give maintenance doses then you'll have to source your own for iron. You need all your other vitamins testing again to find out where they are. Were the results for vitamin D before the loading doses? If so, then GP may not give supplements if you are now in range so check vitamin D level and if less than mid-range, you'll want to supplement. When you take vitamin D3 you need to also take the co-factors magnesium and K2-MK7. Magnesium citrate is fine.

You need B12 investigated further before you supplement either B12 or folate but do not delay as deficiency can cause damage. Post your B12 and folate results along with a little background on the HealthUnlocked Pernicious Anaemia forum for best advice.

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I'd like to say I believe you have a lot of reason to be hopeful for much better health in the future once you can repair your grim vitamin levels. They are so low you cannot be expected to feel well. Your ferritin at 41 means you are likely not even able to convert the Synthroid to T3 so it's almost doing you no good. Knowledgeable people will be a long soon with good advice but in the meantime be cheered that you should be able to improve a lot in the future.

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Are you in the U.K.?

Do you have results for TSH, FT4 and FT3.

Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

If they are high this is autoimmune thyroid disease also called Hashimoto's

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Your vitamin levels are terrible, so it's very likely you have Hashimoto's

Vitamins must be supplemented continuously to be able to utilise your thyroid hormones.

See SeasideSusie detailed vitamin advice

Eg similar dire levels

healthunlocked.com/thyroidu...

Would suspect your Levothyroxine dose is not high enough

50mcgs is only a starter dose for most people. Dose is increased in 25mcg steps, retesting 6-8 weeks after each dose increase until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Vitamins must be at good levels too

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Prof Toft - brilliant article just published

rcpe.ac.uk/sites/default/fi...

Has your GP suggested testing for coeliac?

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

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TSH - 0.02 (0.2 - 4.2)

Free T4 - 22.1 (12 - 22)

Endo won't check free T3, TPO antibody 348 (<34) TG antibody 288.3 (<115) in UK

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Your low vitamins are stopping thyroid hormones being used, so your tests appear to show your over treated, but you are actually likely to be severely hypo

Essential to improve vitamins

Make urgent appointment with different GP early next week

If you have supportive friend or family member take them along

It is common that GP takes things more seriously if there's a witness

See this similar post

healthunlocked.com/thyroidu...

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That's the lowest Vit D i've seen lately - sunshine for your "bone pain, chest pain..." (let alone all the other low vitamins) - no wonder you are feeling awful,

- but a low TSH & FT4 top of range - you need to ask for FT3 to see if T4 is converting to usable T3 - I doubt it can be converted with such low vital minerals.

PS don't take your levo within 24 hours of a blood test - the test will wrongly report on Levo in the system.

Even despite possible low thyroid/stomach function I can't help wonder what is in the food nowadays - talc & cardboard?

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Thanks I usually have FT3 tested but endo didn't chase up the lab to request FT3

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I never take levo before blood test I leave 24 hours between dose and test

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I'm amazed you can even string a sentence together - please go back to GP and ask (insist, take a friend) to sort the deficiencies, the presence of antibodies indicates autoimmune thyroiditis (Hashimotos where your results will be up and down like a yo yo as your thyroid is attacked) and levo just won't work without adequate vital minerals (esp iron/ferritin B12/folate vit D - and others) you need to investigate coeliac too - why you're not absorbing vital minerals.

(Dr Bergman explains it all well - have a look on youtube - it's probably not just about one body part).

Anyway, with all the good suggestions above - I hope you're feeling less hopeless & isolated now, there's a lot of us here :) J x

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It's frightening with those results that your doctor isn't pulling of the stops to get you well again! Unbelievable!!!! you. Red all these things to be optimal not just in range which yours aren't even that for your thyroid to work properly. With these results you won't be converting the inactive T4 into the active T3 that every cell in your body will be crying out for! You must be feeling dreadful and that's why youfcFT4 sxicerange, it's not being converted and no doubt your doctor would want to lower your meds!!!!!! Don't let him do that!!!! That will reduce further any T3 you have got. So you need to get your vitamins optimal, take the advice of SeasideSusie as it's spot on. It will take a while to get those levels you and so you need patience. You also need to get a T3 result as that is the important readibgvforceell being. A lot of us though have to do our own private tests as many labs won't test the most important T3 reading. Hope things start to improve but we are talking moths not weeks Good luck.

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You are unwell. It is so hard and difficult for you. the stress of all of that, will, in itself be using any reserves of nutrients fast.. they need building up. I think these things will really help.

I think magnesium citrate and proper amounts of water would do you a lot of good. Headaches are very often lack of water. Aches and pains are often shortage of magnesium. If you get the powder and take it in water or mixed with food it will not do harm, build it up. At first you may find it cleans you out a bit(not a bad thing), but then the body gets used to it. It wont keep more than you need, it is safe.

Also take at least 10 g vit c each day -in 1 g amounts through the day. I buy Vit C powder and mag. citrate from credence.org in uk, online.

If you can then find a good liquid supplement with trace minerals and lots of nutrients and antioxidants take it in generous amounts. i take SpectraMaxx from (zest.sisel.net ) Cut out toxic drinks and food if they have crept in. Cut out any other toxins.

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