Newbie diagnosed this week: Hi I am new and newly... - Thyroid UK

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Newbie diagnosed this week

Shannak profile image
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Hi I am new and newly diagnosed, antibodies 887 (<34) TSH 106.5 (0.2 - 4.2) FT4 10.2 (12 - 22) FT3 4.0 (3.1 - 6.8)

Started on 25mcg levothyroxine. Feel awful with tinnitus, pins and needles, constipation, tiredness and muscle cramps, heavy periods, also sweats? I am 25 yrs old and female. Thanks for interpretation of bloods

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Shannak
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SeasideSusie profile image
SeasideSusieRemembering

Shannak Welcome to the forum.

Your results show you are very hypothyroid and really yourGP could have started you on a higher dose than 25mcg, unless you have a heart condition. You could have started on 50mcg, even 75mcg. However, at least you have a diagnosis and Levo.

The protocol is for retesting 6 weeks after starting Levo, an increase of 25mcg, another retest 6 weeks later and another increase of 25mcg, and repeat until your symptoms abate.

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 when on Levo.

When having thyroid tests, always book the very first appointment of the morning, 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.

**

antibodies 887 (<34)

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.

Unfortunately, most doctors attach no importance to this, or don't understand it. But it does matter to you because as the antibodies wax and wane, the fluctuations in symptoms can make you feel hyper and then you can swing back to hypo again.

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.

Some information to help you understand about Hashi's

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

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

Some of your symptoms can be indicative of low nutrient levels, particularly tinnitus, muscle cramps and pins and needles. If you've not had the following tested then ask for them to be done (or get them done privately, we can recommend labs that do home fingerprick tests)

Vit D

B12

Folate

Ferritin

Post the results when you have them for members to comment and make suggestions for supplementing where levels are low or deficient.

Shannak profile image
Shannak in reply to SeasideSusie

Thanks I don't know the reason for me starting on 25mcg. I have a low heart rate, might this be why I was started on 25mcg? I had vitamins and minerals tested about 2 weeks ago and I will post these

SeasideSusie profile image
SeasideSusieRemembering in reply to Shannak

I don't know why you were started on 25mcg, it's very likely that your GP doesn't know enough about treating hypothyroidism and hasn't kept up with more recent thinking that higher starting doses can be made unless it is a child, an elderly person, someone frail and heart problems.

Shannak profile image
Shannak

Vitamin/mineral results

Ferritin 21 (30 - 400)

Folate 1.8 (2.5 - 19.5)

Vitamin B12 196 (190 - 900)

Vitamin D 25.1 (25 - 50 vitamin D deficiency. Supplementation is indicated)

Taking the following:

5mg folic acid

800iu D3

Both on prescription

SeasideSusie profile image
SeasideSusieRemembering in reply to Shannak

Shannak

Ferritin 21 (30 - 400)

For thyroid hormone to work (our own or replacement) 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 level within 24-48 hours.

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.

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...

However, with your level that low, you need an iron panel and full blood count to see if you have iron deficiency anaemia. If not done then ask for them. If diagnosed with iron deficiency anaemia then the treatment is 1 x ferrous fumarate 2 or 3 times daily.

Your GP should not have ignored this result.

**

Folate 1.8 (2.5 - 19.5) Vitamin B12 196 (190 - 900) 5mg folic acid

Before you started the folic acid, were you checked for signs of B12 deficiency? Check now b12deficiency.info/signs-an... Your B12 level is extremely low and you should have been checked. You should post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc You may need testing for Pernicious Anaemia, you may need B12 injections. See what they say and then discuss with your GP.

Be aware that taking folic acid can mask signs of B12 deficiency so think back to before you started taking them when looking at the list of signs of deficiency.

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."

Folate should be at least half way through it's range.

**

Vitamin D 25.1 (25 - 50 vitamin D deficiency. Supplementation is indicated) 800iu D3

You are 0.1 away from severe deficiency. 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.

Once the loading doses have been completed you will need a reduced amount 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) 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/

Ask your GP for the loading doses, if he wont give them then come back here and we will make suggestions as to what you can buy yourself and the dose to take. 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

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.

Shannak profile image
Shannak in reply to SeasideSusie

Thanks a complete blood count and iron panel were done but GP didn't tell me what levels meant

MCV 76.1 (80 - 98)

MCHC 375 (310 - 350)

MCH 27.9 (28 - 32)

Haemoglobin 120 (115 - 150)

Platelets 245 (150 - 400)

Iron 7.2 (6.0 - 26.0)

Transferrin saturation 12 (10 - 30)

Not checked for B12 deficiency so will go to pernicious anaemia forum now thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Shannak

These point to iron deficiency anaemia.

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.

I think maybe you should see another GP and point out how negligent this one has been. It's unforgivable that he has ignored all these results.

SlowDragon profile image
SlowDragonAdministrator

As SeasideSusie says. Is there another GP in the practice you can see?

You need significant vitamin supplements so that thyroid hormones can work and in a few weeks an increase in Levothyroxine.

Read as much as possible about Hashimoto's as you can. It's not well understood by many GP's.

Reading posts on here and the home site of Thyroid UK good place to start

With Hashimoto's 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 and eventually start to lower antibodies. Very very many of us here find it really helps and as antibodies decrease, this improves symptoms, once on adequate dose of Levo that brings your TSH down to around one.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

silverfox7 profile image
silverfox7

Not that long ago everyone was started on 25 so you are only six weeks behind by starting at the lower dose. We start low because our body needs to get used to it so we then increase slowly every 6 weeks if testing suggests that do always ask for a print out and the ranges when you are tested. The ranges differ from lab to lab so they are very important as otherwise we would just be guessing. It can be a slow process working our way up through the doses but not advised to try and speed it up-it doesn't work like that but hopefully you will start to feel some improvement as this happens. Each dose increase take 6 weeks to fully get into the system so nor apparent for a while and increasesare done in 25 mcg's.

Have a look on the Thyroid Uk site who run this forum as many useful tips on there on how to take medication for the best effect and also lots to avoid as well. Shout out if anything you don't understand, we are all here to help if we can.

SlowDragon profile image
SlowDragonAdministrator

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

You should have thyroid levels retested after 6-8 weeks and then dose increased in 25mcg steps. Waiting further 6 weeks then retesting etc until TSH is in lower part of range.

All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after.

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