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Thyroid UK
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Newbie

Where to start?

Hypothyroidism diagnosed 2012

Iron deficiency diagnosed 2013

Vitamin D deficiency diagnosed 2013

Low cortisol diagnosed 2014

Then high cortisol diagnosed 2015

Polycystic ovary syndrome diagnosed 2015

Folate deficiency diagnosed 2017

Symptoms list

Ripple like spasms in little finger

Cholesterol deposits around eyes

Easy weight gain

Flaky nails

Feeling cold

Hair loss

Depression

Low concentration

Low confidence

Dry skin

Coarse skin

Heavy periods

Pins and needles

Joints locking

Muscle pain

Taking 100mcg Levothyroxine

If anyone could advise what I need to do would be appreciated.

TSH *10.8 (0.2 - 4.2)

Free T4 12.7 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

Thank you.

29 Replies
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Helsen

Are you taking any supplements for nutrient deficiencies? What are your latest results and what are you taking?

What had your GP said about your latest thyroid test results?

Have you had thyroid antibodies tested, do you have Hashimoto's?

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Endo has said I should be taking 100mcg Levothyroxine

Taking no supplements

I have antibodies results below

Thyroid peroxidase antibodies *348 (<34)

Thyroglobulin antibodies *277.5 (<115)

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Helsen

Sack your endo. He is most likely a diabetes specialist who pretends to know something about treating Hypothyroidism. Obviously he doesn't. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

See your GP and ask for an immediate increase of 25mcg levo with 6-weekly retesting/increasing as Shaws has said. In support of your request the following information can help - see thyroiduk.org.uk/tuk/about_... > Treatment Options:

"Dr Toft 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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org highlight question 6 to show your GP.

**

Your high antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. Hashi's causes fluctuations in symptoms and test results. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin which is a protein thought to trigger antibody attacks.

Read, learn, educate yourself so you can help yourself because doctors know nothing about how Hashi's affects the patient:

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

**

Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels are the result. As you have deficiencies this is probably what's happened with you.

Can you please post your nutrient test results as requested. I have links which can help when asking your GP for appropriate treatment.

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Ok thanks I will do this now. Whatever I take doesn't help me feel any better so I just basically gave up. I only just stopped my vitamin D and folic acid about a week ago.

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I think your supplements didn't help because they weren't being absorbed. Something else that can be addressed and I'll give a link when you post your vits/mins.

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Been taking selenium a few times because I felt my level was low?

Selenium 0.91 (0.89 - 1.65)

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Also taken magnesium as well?

Magnesium 0.85 (0.70 - 1.00)

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Definitely magnesium as it's needed for D3 to work. Check out the different forms in the link I've posted below, choose the one best suited for you. I need magnesium citrate to help bowels. You might need some other form.

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I was taking magnesium chloride, but not for long. Just to help me sleep and get rid of cramps I had

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I think any form of magnesium might help with cramps. I left my magnesium citrate off for a couple of nights and had the most awful cramps in my foot come back. Stopped again when I restarted my magnesium.

Magnesium is generally calming, so probably any form can help with sleep if you take it in the evening.

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If your thyroid medication isn't correct you can take all the supplements and change your diet and still feel rubbish! Please make sure you up your thyroxine dose!

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Ferritin was treated with an iron infusion 2016 when ferritin was found to be 15 (15 - 150) after many years of being on iron tablets. Infusion brought it up to 197 (15 - 150) and in June 2017 was 59.9 (15 - 150) haematologist wants it above 50, it is probably below 50 now. Periods drop my ferritin level by 20 points and I have had 4 periods since then. Haematologist discharged me with a maintenance dose of 210mg ferrous fumarate to take once a day because MCV went below range. I was on it for 8 weeks

Folate was treated with folic acid 5mg in 2016 but I began to experience neuro symptoms on this so I stopped it.

Folate 2.3 (2.5 - 19.5) in June 2017

Vitamin D I supplement with 1000iu vitamin D and 800iu prescription 800iu D3.

Total 25 OH vitamin D 46.1 (25 - 50 deficient) in June 2017, retest due December 2017

Vitamin B12 I take as injections for low B12/possible B12 deficiency. Only had one and I have them every 3 months. First one June 2017.

Vitamin B12 296 (190 - 900) February 2017

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Helsen

Ferritin - I think you need to know your latest level, if it's now below 50 you may get another infusion. Then to maintain it, eat liver regularly. Much easier than trying to raise it with iron tablets which you have to fit around other supplements and medication.

If your MCV was below range then that's iron deficiency anaemia and the treatment for that is usually 2 or 3 ferrous fumarate tablets daily - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

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

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

**

Vitamin B12 296 (190 - 900) February 2017

Do you have any signs of deficiency b12deficiency.info/signs-an...

Folate 2.3 (2.5 - 19.5) in June 2017 Folate was treated with folic acid 5mg in 2016 but I began to experience neuro symptoms on this so I stopped it.

Perhaps folic acid wasn't right for you. Some people don't get on with it and do better with methylfolate.

I would post on the Pernicious Anaemia Society forum for further advice especially if you have B12 symptoms because injections should be more frequent then.

healthunlocked.com/pasoc

**

Total 25 OH vitamin D 46.1 (25 - 50 deficient) in June 2017, retest due December 2017 I supplement with 1000iu vitamin D and 800iu prescription 800iu D3

Not enough.

The recommended level is 100-150nmol/L according to the Vit D Council. You need more like 5000-6000iu daily at the moment to raise your level, then when you reach the recommended level you need to find your maintenance dose, it may be 2000iu daily, maybe more or less, it's trial and error. Mine is 2000iu daily all year round.

Are you taking tablets, softgels, or what? As you have Hashi's, for best absorption you should take an oral spray such as BetterYou. They do 3000iu dose so you could double up and take 6000iu daily. Your retest in December should show improved level but you may need to retest in 3 months to check where you are then.

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

BetterYou do a combo D3/K2-MK7 spray which you could use then you'd only have to buy the magnesium separately.

**

Selenium is a good supplement for us hypos, particularly Hashi's as it helps reduce the antibodies. 200mcg selenium l-selenomethionine 200mcg daily is what you need.

**

As I said before, Hashi's causes gut/absorpion problems resulting in low nutrients. So the absorption problem needs addressing. Check out SlowDragon's reply in this thread for information and links to help healthunlocked.com/thyroidu...

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I take vitamin D 1000iu oral spray by Better You and the vitamin D3 800iu tablets I crush and swallow

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OK, so take more of the spray, as I said you need 5000-6000iu daily at the moment. When your current spray runs out, maybe buy the 3000iu one. If every you need less than 3000iu daily before it runs out, you can do it alternate days, or 5 days a week, or whatever is needed. I do some of my supplements only 5 days a week.

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Was taking vitamin C briefly as well because of scurvy symptoms (bleeding gums, bruising)

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Vit C is an excellent supplement, it helps support adrenals, and we should take at least 2000mg daily in divided doses. I take an L-ascorbic acid powder (so no fillers) mixed with orange juice 2 or 3 times a day.

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Thank you Susie, you have been really helpful with the supplements. Do I go back to reintroducing the folic acid and the vitamin D one at a time or is a week not much difference to add them both in at the same time? I am anxious to restart the magnesium since it helps me sleep/with the cramps and I woke up with no headaches the day after I took it.

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You're welcome. Don't forget to check out the links about addressing absorption problem in SlowDragon's post. It's a big jigsaw puzzle and we have to build up the pieces one at a time.

Introduce them one at a time, give it a week before adding the next one. Start with the most useful one which sounds like it might be magnesium.

Don't forget the cofactors - K2-MK7 with the Vit D, but I'd restart the Vit D first, if you're close to finishing the spray then maybe you might want to buy the combo spray next time.

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Sack your doctor or whoever is (not) treating your hypothyroidism.

Five, nearly six years, has elapsed since you were diagnosed. The aim is a TSH of 1 or lower. Not above the 'top of the range' in UK, in other countries the top to be diagnosed is 3+.

Your GP could have caused more damage by his inept treatment and we have to read, learn and ask questions.

No-one who has been on levothyroxine for nearly six years should have a TSH be above range.

Don't go back to this person and I wouldn't call him a doctor at all. If we who are on this forum know more than those trained (in what I don't know) in the treatment of one of the most commonest fatal diseases if unmedicated the posts we get are absolutely shocking.

Make an appointment and see another doctor and it seems like finding a needle in a haystack these days. Tell him you've taken advice from the NHS recommendation and advice on dysfunctions of the thyroid gland - Healthunlocked Thyroiduk.org.uk and that you need a full thyroid hormone test (NHS doesn't usually do this but do ask). What isn't done you can have privately but after six years you deserve a Full Thyroid Function test as follows:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. He should do all of the following B12, Vit D, iron, ferritin and folate. Deficiencies are probable and need to be optimal so we can recover our health.

All blood tests for thyroid hormone have to be at the very earliest fasting and allow a gap of 24 hours between your dose of levothyroxine and the test and take afterwards. Get a copy of your results with the ranges (ranges are important as labs differ) and put up a new post for comments.

Both FT4 and FT3 are near bottom of range instead of in the upper part.

On 'brilliant doctor' now deceased was right when he tried to get the Endocrinology to listen to him by saying that patients were in a 'Parlous Situation' due to the modern method of diagnosing/treating. He is proved right every single day on this forum and today we've had such horrendous posts you wonder how these people are entitled to ruin people's lives without recourse.

Tick off and give to the other GP.

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

You need an instant increase of 25mcg with blood tests and increase of 25mcg every 6 weeks until you feel better.

3 likes
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Endo has said I should be taking 100mcg Levothyroxine

Taking no supplements

I have antibodies results below

Thyroid peroxidase antibodies *348 (<34)

Thyroglobulin antibodies *277.5 (<115)

Reply

Sack your Endo then as he knows nothing and you have an Autoimmune Thyroid Disease and treatment is the same as for hypothyroidism. Your condition is also called Hashimoto's the common name. Going gluten free can help reduce the antibodies which attack your gland and wax and wane until you are hypothyroid.

Speak to your GP urgently and ask for 25mcg increments every six weeks. I hope your doctor knows how to treat you. You'd actually think that by going to an Endo that he would know more but doesn't.

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With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

Under control means TSH around one and FT4 towards top of range (NOT as your useless endo has left you)

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...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

We need to supplement at MUCH higher rate that GP's have any idea about

Ask of PAS healthunlocked, but I think you should have had a B12 injection every day until symptoms abate

Very many also top up with B12 sublingual lozenges every day

Plus daily vitamin B complex to help Folate and other B vitamins are also important

Eg these two links

thyroidpharmacist.com/artic...

drgominak.com/sleep/vitamin...

Vitamin D......personally I have to take 6000iu every day (Better You mouth spray) or levels decline

Magnesium is very important and can really help, not only with sleep and constipation!

Importance of magnesium

hypothyroidmom.com/two-vita...

Vitamin C is great for helping adrenals

Selenium to help improve conversion

Others that some of us find helpful are zinc and vitamin A

Sorry I don't know anything about ferritin ( mine's always too high! Unusually for someone with Hashimoto's, apparently it's a side affect too)

Gluten.....you don't need ANY gut symptoms for it still to be very badly affecting you

So many of us find it gives great improvements but it has to be 100% strictly gluten free

My gastroenterologist explained that they only uncover 30-40% of suspected Coeliacs as so many are silent (no obvious symptoms) and that doesn't even take into account gluten intolerance for which there's currently no easy test

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Slow Dragon,just noticed your comment about too high ferritin .I am the same ,thought it was sign of inflammation somewhere but you reckon its a Hashi side effect?

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Yes apparently can be.

Interesting link

forefronthealth.com/hypothy...

Past post on here

healthunlocked.com/thyroidu...

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Thanks for the link .I will stop bothering about it.

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Your TSH is too high. The normal range is what is shown in brackets. Therefore you need to take more thyroxine to bring those readings down. (High reading = underactive thyroid function = hypo :. Low reading = overactive thyroid function = hyper).

All the symptoms you list are symptoms of underactive thyroid. They will go but take a good while the longer you leave under medicated. All the best!

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Hello again. You seem to be getting a lot of complex advice on supplements etc but when you are hypo your brain isn't exactly functioning at its best so I'd find this info overload and may not be what is needed. Please concentrate on upping your thyroxine dies and with your initial readings in hand get another opinion. You could even show them to a chemist!! I have had a doctor not sure how to read the results so had to point out that a raised TSH meant had to raise the thyroxine dose. ( it can seem counterintuitive!!)

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That seems a bit strong ,Gillian. It is a personal opinion to get more levo as a priority .Not sure the poster was saying ignore the rest, so much as set aside until able to absorb the information. " not what is needed" I took to mean the amount of information not the content.

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