Why am I not converting?: Diagnosed 2013. Taking... - Thyroid UK

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Why am I not converting?

Flower32 profile image
14 Replies

Diagnosed 2013.

Taking 175mcg Levo.

Symptoms - goitre, dry skin, constipation. fatigue, tiredness, muscle cramps and spasms, dry and gritty eyes, bone pain, weight gain, cold intolerance, sweats, low body temperature.

Thank you

TSH 1.26 (0.2 - 4.2)

Free T4 19.5 (12 - 22)

Free T3 3.8 (3.1 - 6.8)

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Flower32 profile image
Flower32
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14 Replies

You may have a defective gene (DIO2) and so have an insufficient conversion rate of T4 to T3. However, another possibility is that you are deficient in ferritin and/or folate, Vitamin B12 and Vitamin D. It's not unusual for hypothyroid people to be deficient in these nutrients as we often have low stomach acid. Have you had blood tests for any of those? If they are deficient you will have trouble making use of any Levo you're given.

Flower32 profile image
Flower32 in reply to

Ferritin 11 (30 - 400)

Folate 2.3 (4.6 - 18.7)

Vitamin B12 174 (180 - 900)

Vitamin D 20.6 (<25 severe)

Marz profile image
Marz in reply to Flower32

They are dire results and need immediate attention. No wonder you are not converting :-) Ferritin should be mid-range and Folate. B12 is better near the top when Hypo and VitD needs to be around 100.

What has your GP said and done about these terrible results - you must be feeling terrible.

Click onto SeasideSusie and read her REPLIES to other members giving information time and time again to similar results. It is a disgrace that these basics of health are being ignored at GP level and causing such suffering to many.

Do you have gut/absorption issues ? Are you taking any other medications ?

Flower32 profile image
Flower32 in reply to Marz

Thanks GP has not said much about results, I have gut and absorption issues but not on any other medications.

Marz profile image
Marz in reply to Flower32

Did you read up on the replies by SeasideSusie ? - sorry but you have to read and learn to treat yourself. The NHS is not interested in your well being - it is good business to keep you unwell and eventually needing endless drugs making dosh for BIG Pharma. You need immediate treatment.

Do you have Hashimotos ? Are you gluten Free ? Something needs to change and fast :-)

Flower32 profile image
Flower32 in reply to Marz

Not sure if I have Hashimotos thanks will post antibody results

in reply to Flower32

OK so there is your problem. Did you get these results via your GP or as a finger-prick test? If your doctor saw them he/she is negligent for not getting you an immediate iron infusion to boost your ferritin rapidly. Also all the other results are dangerously low. Your body cannot make use of Levo with that situation.

You should start on iron tablets immediately if you can't get an infusion or have to wait for it. Ferrous fumarate or ferrous sulphate, 200 mg tablets 3 times a day. Take at least 4 hours away from Levo.

Folate needs to be near the top of the range, you can supplement it with a good B-complex (Jarrow's B-right springs to mind) containing 400 mcg. Also, eat plenty of leafy green veg.

B12 should be over 500 at least and ideally even higher in the range. Supplement with sublingual methylcobalamin B12 tablets, 5000 mcg since your B12 is too low. I don't know whether you can get B12 injections on the NHS to give you a boost at your current level or not, you could ask about that, since you are below range.

Vit D, again, your doctor should be giving you a loading dose. You could supplement with 10000 i.u. tablets to begin with for a month then re-test, and probably drop your dose down if your levels are progressing well.

I'm sure others will chip in to give more advice.

Flower32 profile image
Flower32 in reply to

Thanks GP has not said much about results, done on NHS

shaws profile image
shawsAdministrator in reply to Flower32

Your doctor is extremely negligent - no other word suits. deficient B12 can lead to 'neurological problems and harm'. A B12 level should be around 900 and 1,000 and you aren't near the bottom of the range. We can get nerve damage which wont recover.

healthunlocked.com/thyroidu...

SeasideSusie profile image
SeasideSusieRemembering

Flower32 What do you mean by "GP has not said much about results". Has he prescribed anything at all? You have very severe deficiencies which will be causing your symptoms, and thyroid hormone can't work with these nutrient levels, they need to be optimal. You must see your GP about them and get the appropriate treatment. In fact, I would see a different GP and point out that this GP has neglected these results if he's done nothing about them.

Ferritin 11 (30 - 400)

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. You need an iron supplement and because your level is so far below range ideally you need an iron infusion so ask for one. An infusion will raise your level within 24-48 hours. In addition, you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in... and this is a good way to keep your level up once it's improved.

Also, you need an iron panel and full blood count to see if you have iron deficiency anaemia. If this is diagnosed then the treatment will be 2 or 3 x ferrous fumarate daily. 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.

**

Folate 2.3 (4.6 - 18.7) Vitamin B12 174 (180 - 900)

You are folate and B12 deficient. Do you have any signs of B12 deficiency b12deficiency.info/signs-an...

You need to post these results on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc also quoting your ferritin result and any iron deficiency information that you may have, plus any signs of B12 deficiency from that list that you might be experiencing.

You should be tested for Pernicious Anaemia and you will need folic acid prescribed. Do not start taking the folic acid until other investigations have been carried out.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Your levels are far too low to consider self supplementing. See what the PA forum advises then discuss with your GP.

**

Vitamin D 20.6 (<25 severe)

As you have severe Vit D deficiency you need loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses, don't accept 800iu which is what a lot of doctors prescribe, it must be the loading doses. Once these have been completed you will need a reduced amount (not 800iu) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

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 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.

Marz profile image
Marz in reply to SeasideSusie

Do hope Flower acknowledges your amazing support and answers you soon. So wish there had been someone around like you when I started on my journey. 😊😊 Perhaps she is poorly ....

researcherUK profile image
researcherUK in reply to Marz

At the beginning of the journey, many are often confused, scared, and are not in any position to trust strangers. Mind you, their T3 levels are also very low so the ability to think properly and to rationalise can also be not as it should be. Patience is also key, on our part, so to gradually help them to understand, learn, and decide for themselves.

Some people also post the same questions, under different threads, which is fine so they get the reassurance. Kudos to anyone who takes the time and trouble to explain.

Marz profile image
Marz in reply to researcherUK

One only has to click onto SeasideSusie and read her REPLIES as suggested time and time again on this Forum. So what is there not to trust ? I think it is important we guide people gently to wellness as many of us have done over many years here - but we also have to acknowledge help that has been so kindly given. I joined in 2011 :-)

researcherUK profile image
researcherUK in reply to Marz

That is exactly what I said :-)

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