Phone call from gp

[Jennymarie]

Hi everyone I am new, I just had a phone call from my GP to say he is worried about my free T4 level, it is 4.2 (12 - 22) I am having symptoms of tiredness and muscle cramps and breathlessness, what does this mean please? Thanks

[ITYFIALMCTT]

Another member posted a few hours ago about a similar call from a GP. You might find some relevant information there.

healthunlocked.com/thyroidu...

Do you have a face to face appointment booked with your GP today? Did you have any other tests run with results you can share (Like TSH level, thyroid antibodies, vitamins and minerals with their reference ranges) as this helps members to comment.

[Jennymarie in reply to ITYFIALMCTT]

Yes I have appointment booked with GP later and other results are

TSH 108.4 (0.2 - 4.2)

Free T3 2.6 (3.1 - 6.8)

Thyroid peroxidase antibody 805.3 (<34)

Thyroglobulin antibody (private) >1300 (<115)

[shaws Administrator in reply to Jennymarie]

He should also be very concerned about your below range FT3 as well as your very high TSH. He should prescribe immediately 50mcg of levothyroxine which should be taken on an empty stomach first thing with a full glass of water and wait for an hour before eating. Food interferes with the uptake of thyroid hormones.

You have an Autoimmune Thyroid Disease commonly called Hashimoto's and it is due to your high antibody levels and antibodies attack your gland until you are hypothyroid but treatment is the same. I note that ITYFIALMCTT has given you the relevant details. Thyroid hormones run our whole metabolism from head to toe and brain and heart require the most. The aim is a TSH of 1 or lower and FT3 and FT4 towards the upper part of the range.

The following is a list of clinical symptoms and the aim is to relieve you of them. Some doctors don't really understand about optimum treatment but the aim is a TSH of 1 or lower (not somewhere in the range).

[Jennymarie]

Ferritin 7 (15 - 150)

Folate 2.3 (2.5 - 19.5)

Vitamin B12 167 (180 - 900)

Vitamin D total 18.2 (<25 severe vitamin D deficiency. Patient may need pharmacological preparations)

[ITYFIALMCTT]

Well, as a cold read, you won't be surprised to learn that your results are screaming hypothyroidism. Unless there's another contributory factor that we don't know about, you have raised antibodies that are typically diagnostic of Hashimoto's Syndrome - the commonest root of hypothyroidism.

TSH 108.4 (0.2 - 4.2) Very high above the reference range - your pituitary is kicking your thyroid gland with this level of thyroid stimulating hormone.

Free T3 2.6 (3.1 - 6.8) Despite the high TSH, you're only managing to put out a below the reference range level of FT3 and TF4 so no wonder you're feeling tired, breathless, and crampy.

Thyroid peroxidase antibody 805.3 (<34)

Thyroglobulin antibody (private) >1300 (<115) Both sets of antibodies well and truly above the range.

Are you already on hypothyroid therapy? If not, you'll probably be prescribed a starter dosage of levothyroxine (usually around 50mcg unless you have other issues that demand caution). You'll be monitored every 6-8 weeks with blood tests, and your dosage tweaked until there's a resolution of your symptoms. And then you'll continue taking the T4 and be monitored.

[Jennymarie in reply to ITYFIALMCTT]

Hi not on anything for thyroid I haven't been told why

[Clutter]

Jennymarie,

You are profoundly hypothyroid to have TSH 108 and FT4 and FT3 below range. Your GP will prescribe Levothyroxine. The starting dose will be low as thyroid replacement has to be introduced gradually to avoid precipitating an adrenal crisis. Dose should be increased every 4 - 6 weeks until TSH is 0.2 - 1.0 and FT4 is in the upper range and FT3 is around 5.0.

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

Ferritin is deficient and may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. If you are prescribed iron it should be taken with 1,000mg vitamin C to aid absorption and minimise constipation. Iron should be taken 4 hours away from Levothyroxine.

B12 and folate are deficient. You will need B12 injections initiated 48 hours prior to taking folic acid and your GP should test for pernicious anaemia as a cause of deficiency. It would be a good idea to ask for advice on healthunlocked.com/pasoc before you speak to your GP.

Vitamin D is severely deficient. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d... Do not accept a prescription for 800iu which is a maintenance dose to be prescribed once deficiency is corrected ie vitD around 75 - 150. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

[ITYFIALMCTT]

Well, as poor gut absorption is a fellow traveller of Hashimoto's it's not surprising that your vitamin and mineral levels are so poor and this will be contributing to how you feel. Several members have excellent advice and suggestions for members in your position.

We need to know if you're already supplementing, if so, what are you taking, in what dosage, and for how long, please.

Ferritin 7 (15 - 150) Low, below the reference range.

Folate 2.3 (2.5 - 19.5) Low, below the reference range.

Vitamin B12 167 (180 - 900) Low, below the reference range.

Vitamin D total 18.2 (<25 severe vitamin D deficiency. Patient may need pharmacological preparations) Low, below the reference range.

For at least 2 of these, if you aren't already receiving treatment, you require intense treatment in the form of loading doses and you need supplements for the others.

You might need an infusion to bring up your iron levels, depending on other blood test results. You certainly need supplementation.

Have you been assessed for Pernicious Anaemia? Your B12 is low, so you need investigation - but as you're also folate deficient, it's essential that any B12 investigation is done before supplementing folic acid as this might interfere with your test results. After the tests are done, you need to supplement folic acid.

Your vitamin D level is very poor and you need loading dosages to bring it up to an optimal level in a reasonable timescale.

I know it's a lot to ask, but if you can let us know if you're already treated for any of these, or supplementing - that would be good to know.

ETA: tagging SeasideSusie because, depending on your answer about whether or not you're already supplementing, she has lots of helpful information about guidelines for treating vitamin and mineral levels etc. that it will be good to know about in advance of your chat with your GP.

[Jennymarie in reply to ITYFIALMCTT]

Hi I haven't supplemented at all for anything and haven't been checked for pernicious anaemia

[ITYFIALMCTT in reply to Jennymarie]

OK - well, SeasideSusie has lots of advice for people like you. If she doesn't see this, I'll locate one of her answers to someone with similar numbers.

But - you need supplementation for all of those results. And, because iron deficiency/anaemia, folate deficiency/anaemia, and B12 deficiency/anaemia are all related and having slightly crossover effects on your full blood count, your GP needs to advise you appropriately.

You should be tested for B12 issues asap - that normally involves things like testing for H Pylori, seeing whether you're taking other medication like NSAIDs or metformin that could be causing problems, or if you actually have Pernicious Anaemia. Only after the testing for this, should you start folic acid supplements. However, you should start B12 supplementation unless there's a good reason not to do this. Your GP might just want you to tweak your diet but the presence of iron, folate, and B12 deficiencies needs to be handled appropriately.

You need vitamin D - and loading dosages of this, not tiny amounts.

ETA: see Seaside Susie's detailed response here: healthunlocked.com/thyroidu...

[SeasideSusie Remembering in reply to Jennymarie]

Jennymarie

You've had advice on the fact that you need stating on Levothyroxine immediately, so I'll just comment on nutrient levels

Ferritin 7 (15 - 150)

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 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...

Low ferritin can suggest iron deficiency anaemia so you should ask for an iron panel and full blood count. If iron deficiency anaemia is confirmed then the treatment is 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 (2.5 - 19.5)

Vitamin B12 167 (180 - 900)

You are folate and B12 deficient. Check for signs of B12 deficiency here b12deficiency.info/signs-an... then post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Quote your B12/folate/ferritin results, any iron deficiency information you may alread have, plus any B12 deficiency signs you may be experiencing.

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."

You should be checked for intrinsic factor antibodies, you may have Pernicious Anaemia and you may need B12 injections. You will need folic acid prescribing but you should have further investigations before starting the folic acid, and B12 must be started before folic acid.

**

Vitamin D total 18.2 (<25 severe vitamin D deficiency. Patient may need pharmacological preparations)

You have severe Vit D deficiency and you need loading doses, do no leave the surgery with a prescription for 800iu, you must have the 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 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.

As you have Hashi's, when you start buying your own D3 supplement, you will be better off with an oral spray for better absorption, eg BetterYou.

**

Hashi's information:

Hashimoto's (autoimmune thyroiditis is the term doctors use) which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors don't attach much, if any importance to antibodies, and don't understand Hashi's and how it affects the patient. You need to read, learn and educate yourself so you can help yourself.

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_...

As Hashi's and gut problems go hand in hand and generally trash nutrients (as yours have been), then it's important to address the associated absorption problem - see the information and links which SlowDragon has given in reply to this post healthunlocked.com/thyroidu...

Doctors aren't trained in nutrition so don't expect him to agree or understand anything about optimal levels or how Hashi's can affect nutrient levels.

[ITYFIALMCTT]

Jennymarie - Please make notes of Seaside Susie's advice and the guidelines she quotes as this will make it easier to discuss matters with your GP.

Would you update us after you've had your chat with the GP and let us know how you get on, please?

[Jennymarie in reply to ITYFIALMCTT]

Thanks will do this have made notes and will feed back what GP says

[SlowDragon Administrator in reply to Jennymarie]

When was this blood test done? Just a few days ago?

Have you had any other thyroid blood tests before this one? Just wondering how long you have been hypothyroid. Perhaps this was first blood test?

[Jennymarie in reply to SlowDragon]

Blood test done 3 weeks ago not diagnosed and first blood test in November 2013

TSH 6.5 (0.2 - 4.2)

Free T4 14.7 (12 - 22)

One after that in January 2014

TSH 3.7 (0.2 - 4.2)

All done early morning fasting

[SlowDragon Administrator in reply to Jennymarie]

Three weeks ago and still not started on Levothyroxine? That's terrible

Have you now seen GP and got prescription for 50mcg starting dose?

If not make an emergency appointment today with different GP

Plus all vitamins need addressing as well

[helvella Administrator in reply to SlowDragon]

SlowDragon,

I saw this post was getting lots of excellent responses - but realising that was three weeks ago is shocking.

Complete failure by doctor to realise the suffering and damage prolonged hypothyroidism and B12 deficiency can cause. Or is it realising but not acting? Which seems even worse.

This should be regarded as somewhat less urgent than a heart attack or other issue in which minutes count - but very high priority behind that sort of issue.

[SlowDragon Administrator in reply to helvella]

Plus GP appears to have completely ignored all these absolutely terrible vitamin levels

Shocking the standard of care.

[Jennymarie in reply to SlowDragon]

Hi GP has taken action on these

[SlowDragon Administrator in reply to Jennymarie]

Glad to hear it

[mistydog]

Please do take these deficiencies very seriously, especially the B12 which can lead to severe neurological damage.

I would ask for a referral to a pernicious anaemia specialist. As your doctor has not acted previously, he may not be clued up on all this, so please take advice here and do not believe that the doctor knows best because they often don't.