Hi new member

Do I need medication?

OCTOBER 2017

TSH 58.5 mIU/L (0.27 - 4.20 mIU/L)

Free T4 9.7 pmol/L (12 - 22 pmol/L)

Free T3 3.7 pmol/L (3.10 - 6.80 pmol/L)

Thyroid peroxidase antibodies 840.5 IU/mL (<34 IU/mL)

Thyroglobulin antibodies 763.3 IU/mL (<115 IU/mL)

Ferritin 22 ug/L (30 - 400 ug/L)

Folate 2.0 ug/L (2.5 - 19.5) ug/L)

Vitamin B12 195 pg/L (190 - 900 pg/L)

Vitamin D total 26.6 nmol/L (25 - 50 nmol/L vitamin D deficiency. Supplementation is indicated)

(5mg folic acid 2016, 800iu vitamin D 2013, ferrous fumarate 210mg 3 times a day 2013)

Thankyou

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Kato7 Yes you do, but what has your GP said?

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Thankyou the thyroid test wasn't ordered by GP but the endo who I see on Wednesday

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Kato7

OK. So your endo should start you on Levothyroxine immediately as you have primary hypothyroidism as confirmed by high TSH and below range FT4. Unless you are elderly or have a heart condition, it should be no less than 50mcg. You need retesting followed by 25mcg increases every 6-8 weeks until your symptoms abate, you feel well, and your TSH is low in range with free Ts in the upper part of their ranges if that is where you feel well.

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only. No tea, coffee, milk, etc for one hour either side. Take Levo 2 hours away from other medication and supplements, some need 4 hours.

When having thyroid tests from now on, always book the very first appointment of the morning, no later than 9am, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

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Thyroid peroxidase antibodies 840.5 IU/mL (<34 IU/mL)

Thyroglobulin antibodies 763.3 IU/mL (<115 IU/mL)

Your endo may or may no attach any importance to these. High antibodies confirm autoimmune thyroiditis (their term) aka Hashimoto's (common term used by patients.). This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss them but they do actually cause the patient to have these fluctuating symptoms and test results which can be unsettling if not understood. Most endos are diabetes specialists with little knowledge of thyroid disease, and even those who are experienced in treating thyroid know very little about Hashi's. So really you should read, learn and educate yourself so you can help yourself. If you discuss the following with your doctor, it may very well be dismissed as nonsense, many Hashi's patients will disagree.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

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Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels are the result and this would seem to be the case with you.

Ferritin 22 ug/L (30 - 400 ug/L) ferrous fumarate 210mg 3 times a day 2013)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.

You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months.

You can also 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...

To be prescribed 3 x ferrous fumarate daily I imagine that you have been diagnosed with iron deficiency anaemia. Are you seeing a haematologist? Many require the patient to be re-referred when ferritin falls below 50 to repeat an iron infusion.

I think you need to point out to whoever is prescribing the ferrous fumarate that after 4 years of supplementing your ferritin is still under range and you would like investigations as to why - suggest malabsorption.

When taking your iron tablets, take each one 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.

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Folate 2.0 ug/L (2.5 - 19.5) ug/L) 5mg folic acid 2016

Vitamin B12 195 pg/L (190 - 900 pg/L)

Again you need to ask why your are still folate deficient considering how long you've been taking folic acid.

Were you checked for signs of B12 deficiency because with such a low level of B12 you should have been - check now - b12deficiency.info/signs-an...

Then go and post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

You probably need intrinsic factor antibodies testing, you may have Pernicious Anaemia, you may need B12 injections.

Folic acid shouldn't be taken until further investigations have been carried out then B12 started before folic acid.

See what the PA forum says then discuss with your GP.

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."

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Vitamin D total 26.6 nmol/L (25 - 50 nmol/L vitamin D deficiency. Supplementation is indicated) 800iu vitamin D 2013

And again you should question why 4 years of supplementing hasn't lifted your level more than 1.6 points above severe deficiency. The answer could be malabsorption but it defnitely has something to do with the fact that you are not being prescribed anywhere near enough D3. 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

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 maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU 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 regims 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. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) 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 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.

Once you start buying your own D3 supplement, as you are Hashi's then for better absorption you should buy an oral spray eg BetterYou. They do D3 alone and D3/K2-MK7 combination spray.

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To help with the absorption problem, see the advice in this reply by SlowDragon to this post healthunlocked.com/thyroidu...

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Good luck with your endo appointment. Come back and let us know how it goes. Post a new thread but link back to this one so we can remind ourselves of your story.

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Just to second SeasideSusie - yes, medication and more effective supplementation along with some investigation for your B12 if this wasn't already done before you started the folic acid supplements.

What has your GP said, and do you have another appointment booked?

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Thankyou I am going to an appointment with my endo Wednesday to discuss

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I should think the endo will discuss appropriate treatment with you. However, you do need more active intervention to do something about your vitamins and minerals that are plainly not being brought up to reasonable levels by the current supplementation dosages. I suspect Seaside Susie will have more to say about those. :)

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Did you get your own blood tests due to your doctor not diagnosing you

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Thankyou no these were done by GP because I didn't feel completely well on Levo so I stopped it

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You are very very hypothyroid. The Endo will prescribe and you cannot stop taking thyroid hormones once you are diagnosed as it is a lifelong thyroid hormone replacement. Serious consequences can arise if we stop and hypo is classed as a serious illness because untreated it can cause other issues and, if in the UK, we don't pay in future for any other prescriptions we may need.

There are options for levothyroxine although sometimes just a change of make can improve your health and may work fine. There are also other thyroid hormones available, some which you may have to source yourself.

I hope your consultation goes well.

Blood tests always have to be at the very earliest possible, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take it afterwards.

GP should test B12, Vit D, iron, ferritin and folate too. Everything has to be optimal.

Always get a print-out of your results with the ranges for your own records and you can post for members' comments.

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It’s interesting you say Endos dismiss antibodies. Rheumatologists on the other hand, who do understand auto immune illnesses, pay them great attention. Endos don’t seem to be of much value here, do they.

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Endo's don't seem to understand the vitamin deficiency link either

Or low stomach acid, poor gut function and leaky gut

Or gluten intolerance......etc

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Rheumatologists are certainly on to the Vitamin D deficiency issue.

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