Advice please: Hi I am new, I am at a complete... - Thyroid UK

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Advice please

Tish1178 profile image
8 Replies

Hi I am new, I am at a complete loss. I was diagnosed hypothyroid in 2012 and I currently take 150mcg Levo. My partner is being completely unsupportive and says I should be doing what my endo is saying which is to reduce my Levo. Does this make sense? Thank you

TSH 0.02 (0.2 - 4.2)

Free T4 20.1 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

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Tish1178
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shaws profile image
shawsAdministrator

Do not reduce your dose - you know best - not the doctor nor your partner who, like many people, think that doctor knows best. NOT ABOUT hypothyroid they dont. They haven't a clue about disabling clinical symptoms of which we should have none if on an optimum dose of thyroid hormones that suit us and makes us well. Your FT4 is fine, but your FT3 should be nearer the upper part of the range.

T4 is inactive (a prohormone) and it's job is to convert to T3. T3 is the only Active Thyroid Hormone and it is required in our billions of T3 receptor cells. If we don't have sufficient we cannot function.

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

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

When on an optimum dose we should have no clinical symptoms.

Blood tests should always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.

Levo should be taken, usually, first thing on an empty stomach with one full glass of water. Leave an hour's gap between dose and food as food interferes with the uptake.

SeasideSusie profile image
SeasideSusieRemembering

Tish

There is nothing about your results that say you should reduce your dose of Levo. Your FT4 and FT3 are both in range so no way are you overmedicated, in fact your FT3 is very low and you could do with the addition of some T3.

See thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

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)."

You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.

Your endo is most likely a diabetes specialist (most are) who doesn't know much about hypothyroidism (most don't). He is dosing by TSH which is wrong - TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

Very sad that your partner is unsupportive, we hypos feel bad enough without having to put up with that kind of attitude.

Have you ever had thyroid antibodies tested, and vitamins and minerals - Vit D, B12, Folate and Ferritin. All play a big part in hypothyroidism and high antibodies mean autoimmune thyroiditis, and low nutrient levels bring their own problems. Best to get everything tested if not done already, if already tested please post results and say if you are supplementing, it's a game changer!

Tish1178 profile image
Tish1178 in reply to SeasideSusie

Hi yes, antibody and vitamin/mineral levels below. I believe I have Hashimotos and have tried to avoid gluten (I think I am meant to avoid gluten?) but my partner offers me biscuits and when I say no he gets offended and I feel like I have to eat them to please him.

TPO antibodies 376 (<34)

TG antibodies 804.5 (<115)

Ferritin 31 (30 - 400)

Folate 2.3 (4.6 - 18.7)

Vitamin B12 184 (180 - 900)

Total 25 OH vitamin D 35.5

(<25 severe

25 - 50 deficient

50 - 75 suboptimal

>75 adequate)

Taking folic acid 5mg and 1000iu D3 only

SeasideSusie profile image
SeasideSusieRemembering in reply to Tish1178

Tish

OK, don't take this the wrong way but

but my partner offers me biscuits and when I say no he gets offended and I feel like I have to eat them to please him.

Your partner needs to grow up and think about you, and you need to stop doing things you know are detrimental to your health just to please him. You have to think of yourself. You have Hashimoto's, you will be hypothyroid for life and you need to deal with it or remain unwell and unsupported and I promise you that you will feel like sh1te if you do. Get your partner to buy you some gluten free biscuits (but check the ingredients, apparently commercial gluten free products aren't the tastiest) or he could bake you some from a gluten free recipe!

TPO antibodies 376 (<34)

TG antibodies 804.5 (<115)

Yes, your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet (regardless of what your partner says or thinks, it's your Hashi's not his so he doesn't know how you feel). A gluten free diet 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_...

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and we can see that this has happened to you.

Ferritin 31 (30 - 400)

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...

However, as your ferritin is just 1 point within the range, you need an iron panel and full blood count. Low ferritin can suggest iron deficiency anaemia and you need to know if you have that and get it treated.

**

Folate 2.3 (4.6 - 18.7) Vitamin B12 184 (180 - 900) Taking folic acid 5mg

Did your GP check for signs of B12 deficiency before starting the folic acid? With a B12 level that low he should have done - check here now b12deficiency.info/signs-an... then post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting your folate/B12/ferritin results, iron deficiency information if you already have it and any signs of B12 deficiency you may be experiencing from the list linked to. I think you will need testing for Pernicious Anaemia, you may need B12 injections. Folic acid should not be taken until after further investigations have been carried out as it can mask signs of B12 deficiency, and B12 should be started before folic acid. Please seek further infomation from the PA forum here, go to their page, click FOLLOW and you will be able to post.

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."

**

Total 25 OH vitamin D 35.5

(<25 severe

25 - 50 deficient

50 - 75 suboptimal

>75 adequate)

1000iu D3 only

Your 1000iu D3 is inadequate to raise your level. You are just 5.5 away from where you would have been prescribed loading doses.

The Vit D Council recommends a level of 100-150nmol/L.

You are unlikely to be given a prescription for a higher dose of D3 so my suggestion is to just buy your own and take the equivalent of the loading doses for 3 months and then retest.

NICE Clinical Knowledge Summary recommends loading doses totalling 280,000-300,000iu for levels below 30 cks.nice.org.uk/vitamin-d-d...

so my suggestion would be to buy some BetterYou oral spray as you have Hashi's as it will be absorbed better than softgels or capsules. It comes in 3000iu dose so triple dose (9000iu daily) for 4 weeks (giving 277,000iu in total) then reduce to 6000iu daily and retest 3 months after starting with City Assays who do a home fingerprick blood spot test vitamindtest.org.uk/

When you have reached the recommended level 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.

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.

**

If you check out SlowDragon 's reply to this post, there are links and information to help deal with absorption problems. You need nutrient levels to be optimal for thyroid hormone to work properly, and addressing the absorption problem is necessary so that nutrients can be absorbed healthunlocked.com/thyroidu...

**

I hope your partner can be more supportive in the future.

Tish1178 profile image
Tish1178 in reply to SeasideSusie

Hi I have iron deficiency anaemia from complete blood count and iron panel results but nothing given and I wasn't checked for signs of B12 deficiency or pernicious anaemia thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Tish1178

Tish

The iron deficiency anaemia needs treating - 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.

Go to the link, print off the necessary information, show it to your GP and ask your GP why you have not been prescribed the appropriate treatment and ask him to initiate treatment now.

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.

**

As for the B12, follow my suggestions above and again ask your GP why he didn't take action over your dire results.

Rmichelle profile image
Rmichelle in reply to Tish1178

Hi there take advice from these people here they know their stuff but sadly on the boyfriend bit i would ram his biccies right up his ..... sorry needs to grow up and man up!! This is your health.😊

SlowDragon profile image
SlowDragonAdministrator

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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