Antibodies etc: H I am 18 years old and I have... - Thyroid UK

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Antibodies etc

Elizalee profile image
10 Replies

H I am 18 years old and I have been refused levothyroxine by my endo, he has said I no longer need it and he has discharged me. Have no idea what next to do about this. They have said I don't look hypothyroid and the symptoms I have are not hypothyroid either (sweats/weight loss/tremor/insomnia) Diagnosed 2011. Thank you.

Thyroid peroxidase antibodies 355.3 (<34 IU/mL)

Thyroglobulin antibodies >1500 (<115 IU/mL)

Ferritin 12 (15 - 150)

Folate 4.2 (4.6 - 18.7)

Vitamin B12 101.5 (190 - 900)

Vitamin D 19.3 (<25 severe)

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Elizalee
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SeasideSusie profile image
SeasideSusieRemembering

Elizalee The stopping of your Levo and your thyroid results have been covered in your other post. Hopefully you will see a different GP to discuss all the advice you've been given. Whilst you are there, these need to be discussed too and if your current GP hasn't done anything about them he really needs to be brought to task because he has been extremely negligent.

Ferritin 12 (15 - 150)

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. You need an iron supplement, ideally you need an iron infusion so ask for one, but you may only be prescribed tablets which will take months to raise your level whereas an infusion will raise your levTake 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.

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...

el within 24-48 hours.

Did you have an iron panel and full blood count carried out to see if you have iron deficiency anaemia? If not then ask for them to be done and if you are diagnosed with iron deficiency anaemia then the treatment is 1 x ferrous fumarate 2 or 3 times a day.

**

Folate 4.2 (4.6 - 18.7) Vitamin B12 101.5 (190 - 900)

You are folate and B12 deficient. Do you have any signs of B12 deficiency b12deficiency.info/signs-an... Please go over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Quote your folalte, B12, ferritin (and iron information if you've been tested) plus any signs of B12 deficiency you may be experiencing. Whatever they advise, discuss with your GP. You probably need testing for Pernicious Anaemia, I'm pretty sure you'll need B12 injections.

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."

And just in case you need convincing the seriousness of your B12 result, start watching the first film in this link b12deficiency.info/films/ You wont need to watch it all to get the idea.

**

Vitamin D 19.3 (<25 severe)

As you can see, you are severely deficient in Vit D. Check out the following and ask your GP to treat you appropriately

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 demand that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (not the paltry 800iu you will be prescribed) 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 (not 800iu normally prescribed) 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.

**

Thyroid peroxidase antibodies 355.3 (<34 IU/mL) Thyroglobulin antibodies >1500 (<115 IU/mL)

Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. You can swing from hypo to hyper with their accompanying symptoms and test results, dose adjustment may be needed during these swings.

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.

Read and learn, because your doctors don't seem to know anything about treating thyroid, let along Hashi's, so you're going to have to take control yourself:

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

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

You would be well advised to run as far as possible from this particular GP and this endo. The endo is probably a diabetes specialist, most of them are, and knows little about treating hypothyroidism (I think we already know that!).

See a different GP, get sorted with your vitamins and minerals (tell us what you are being prescribed and we can say if it is enough), get back on Levo. Keep checking in with the forum because the combined knowledge of experienced patients tends to far outweigh what the doctors know.

Once you have got this sorted, give very serious consideration to what this particular GP and endo have ignored and decide if you want to make a formal complaint. I hope you have supportive family to help you through this.

Elizalee profile image
Elizalee in reply to SeasideSusie

Thanks alI that have been flagged up from complete blood count is MCV 78.1 (80 - 98) and MCHC 379 (310 - 350)

Iron panel was in range does it make much difference?

Iron 9.3 (6.0 - 26.0)

Transferrin saturation 13 (10 - 30)

SeasideSusie profile image
SeasideSusieRemembering in reply to Elizalee

Your below range MCV and above range MCHC are enough to suggest iron deficiency anaemia. Make sure you discuss the following with your (new) GP:

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...

Have a read through but this is the treatment:

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.

Elizalee profile image
Elizalee in reply to SeasideSusie

Ok I see a different GP today since I have had these hyper symptoms, I will see what he or she says thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Elizalee

Good luck Elizalee Please come back and tell us how you get on and what you are prescribed.

manifesting_healing profile image
manifesting_healing in reply to Elizalee

have you considered pooling? or Rt3? there is a great facebook group called stop the thyroid madness and they have a UK group on facebook.

greygoose profile image
greygoose in reply to manifesting_healing

Please explain to me what either of these has to do with Elizalee having her levo stopped, because I really would like to know.

SeasideSusie profile image
SeasideSusieRemembering in reply to SeasideSusie

Elizalee Just to explain a little bit more about Hashi's, seeing as you mentioned some hyper type symptoms in your other thread that your endo says aren't hypothyroid -

When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these hyper swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

Your endo obviously doesn't know anything about Hashi's (they call it autoimmune thyroiditis) and because you had those hyper type symptoms he decided you can't be hypothyroid. However, it doesn't explain why he stopped your Levo with a TSH of 41.8 - the only explanation for that is he knows diddly squat about treating hypothyroidism.

Nanaedake profile image
Nanaedake

Glad you've found a new GP but please do let us know how you get on. I think you've had appaling treatment and care so far.

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

If vitamin D, folate, ferritin or B12 are too low they stop Thyroid hormones working. Then when taking Levothyroxine we get symptoms of over medication or being hyper, yet remain hypo.

Your endo obviously completely unaware how Hashimoto's affects gut and causes low vitamins

But also with Hashimoto's because of leaky gut then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps reduce Hashi swings, brings more stability and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/why-changi...

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

Vitamin D will need testing twice a year (NHS unlikely to oblige) Vitamin D mouth spray is good with Hashimoto's as it avoids the poor gut absorption

betteryou.com/vitamin-d-tes...

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...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Great film definitely shows why just testing TSH is inadequate

drbradshook.com/understandi...

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