Thyroid UK
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Hi I have never written on a forum before. I have been on levothyroxine for 5 years for hypothyroid. I was started on 25mcg levothyroxine and gradually went up to 125mcg levothyroxine before being tested for adrenal insufficiency then started back on low dose after the tests came back clear. As another 2 years went by I was taken up to 175mcg and then I had bloods showing I was taking too much but had no symptoms that proved this. So I went back down with no regular blood tests. My endo is now regularly testing me ever 6-8 weeks and I am on 50mcg . I have this tight feeling around my neck at the front when I swallow and my ears feel full and are rumbling very loud. I have mild muscle spasms in my legs and face. Spots on my face, neck and back and chest. Endo just stared at me when I was telling him my symptoms.

Sorry if I am having a rant. Thanks for reading/advice.

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Sounds like you have Hashimoto's (autoimmune thyroid disease) if levels are going up and down. Diagnosed by high thyroid antibodies

Have you had blood test since dose was reduced. That was massive dose reduction. Possibly/probably now under medicated

Have you had vitamin D, folate, ferritin and B12 tested recently too. If not would be good idea to get them tested

Post results and ranges if you have them

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Hi thanks I don't have my current results to hand, the GP surgery won't let me have them.

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The LAW entitles us to copies of our own blood test results. He cannot refuse.

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You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

As shaws says

They can't refuse, you are entitled by law

You need to know results for TSH, FT4 and FT3.

Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

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TPO antibodies were done by GP in January 2017 and they were 347 (<34)

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TSH 7.3 (0.2 - 4.2)

Free T4 11.7 (12 - 22)

Free T3 2.6 (3.1 - 6.8)

GP comments - abnormal seeing consultant

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Pinkbee,

The Data Protection Act entitles patients to their test results and ranges. Contact the practice manager and ask for your recent results. If PM refuses you will have to make a written subject access request. Complain to the ICO if PM if the practice won't comply. ico.org.uk/for_the_public/p...

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TSH 7.3 (0.2 - 4.2)

Free T4 11.7 (12 - 22)

Free T3 2.6 (3.1 - 6.8)

GP comments - abnormal seeing consultant

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Pinkbee,

You are undermedicated to have TSH 7.3 and FT4 and FT3 below range while taking Levothyroxine. Your endo reduced dose too much when you were reduced from 175mcg to 50mcg. Dose adjustments are supposed to be in 25mcg increments to avoid this sort of thing. When is your next endo appointment?

TPO antibodies in January were 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_...

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Next endo appointment in a years time

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Pinkbee,

You can't wait a year for a dose increase. You or your GP need to contact your endo to give him/her your results and have dose adjusted.

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How long ago did you see this endocrinologist?

What was blood test results when you saw them?

Very likely too low then

plus did they check vitamins then?

You absolutely can not wait.

Dose increase is needed now

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I saw him last week and that was when he saw these bloods. He did say my ferritin was too low and I still show signs of anaemia.

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You saw endocrinologist last week with these results

I am speechless

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

Can you post your vitamin D, folate, B12 and ferritin results

SeasideSusie is the vitamin expert and can advise

Many endocrinologists are Diabetes specialists and know little about thyroid

Or in this case perhaps even less

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Welcome to our forum and am sorry you are hypothyroid but I am even more sorry that your dose as been adjusted up/down to try to keep your TSH 'somewhere' in range (it would seem to me). However, the aim for us to be reasonably well is a TSH of 1 or below - not higher. Adjusting doses to keep the TSH in some sort of line is doing us a disfavour.

You are now on 50mcg of levothyroxine which is a starting dose!

There's no point in telling doctors/endos of clinical symptoms as they know none at all. All the emphasis is upon the TSH alone and maybe T4. Neither are ideal particularly when adjustments are unnecessary.

So on this forum we know more than most doctors/endos and many have recovered their health. Sometimes this means we have to have our own blood tests and some also source their own thyroid hormones.

The following are clinical symptoms:

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

The aim of thyroid hormone replacement is to relieve all clinical symptoms and feel well.

You have to request a new blood test and this is the procedure to get the best possible results for us - not for doctors.

The blood draw has to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and test and take afterwards.

Ask for TSH, T4, T3, Free T4, Free T4 and thyroid antibodies. (If doctor or lab wont do all of these you can have them tested by one of our private labs).

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

Also request B12, Vit D, iron, ferritin and folate.

Get a print-out from the surgery of the results and make sure ranges are stated. Ranges are important as labs differ and they are necessary for members to respond. I only have a yearly blood test as I am well and symptom-free, so it seems to me Endo is more concerned with where TSH falls than how the patient feels.

The fact that you had no symptoms previously before dose was adjusted would seem to point that you were on a dose which relieved all of them. That's the purpose of thyroid hormone replacement i.e. relief of all symptoms and feeling well.

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TSH 7.3 (0.2 - 4.2)

Free T4 11.7 (12 - 22)

Free T3 2.6 (3.1 - 6.8)

GP comments - abnormal seeing consultant

TPO antibodies were done by GP in January 2017 and they were 347 (<34

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You have an Autoimmune Thyroid Disease also called Hashimotos - the commonest form of hypothyroidism and treatment is the same.

Going gluten-free can help reduce the attack of the antibodies on the thyroid gland. Antibodies make a diagnosis of Hashimoto's.

Why haven't you been prescribed levothyroxine? I am assuming your doctor is waiting till your TSH is 10 (in UK) in other countries we are prescribed when TSH is 3+.

You should have been prescribed levothyroxine you don't need to see a Consultant. I think that shows the doctor isn't confident at all about treating a patient who has hypothyroidism.

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

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

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I am on 25mcg levothyroxine

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That's too low a dose. 50mcg is usual with 25mcg as an incremental dose. Too low a dose can backfire and make us feel worse.

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So your GP should increase dose of Levothyroxine by 25mcg. Retesting after 6-8 weeks. Repeating in 25mcg dose increases until TSH is around one and FT4 towards top of range.

It doesn't require endocrinologist to do that (and takes months to see one usually)

Can you see different GP, this one is useless

You are very under medicated

Also essential to get vitamin D, folate, ferritin and B12 tested

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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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