Thyroid UK
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Newbie here - problems with endo

Hi I am new here. I was diagnosed with Hashimotos in 2014 and I have been getting calls from my endo ever since I have told him I continue to have symptoms of hypothyroidism on 50mcg Levo yet I felt completely well with T3 added to my Levo and the T3 was added by another endo.

Symptoms are painful periods, tiredness, dry skin, puffy eyes, dark circles under eyes, feeling edgy and anxious, sweats, dry eyes, constipation, trouble concentrating and feeling cold.

Endo says it is time to look at other causes to my symptoms which he says are not related to thyroid disease.

Dec 2017

TSH 5.2 (0.2 - 4.2)

FT4 14.8 (12 - 22)

FT3 3.2 (3.1 - 6.8)

TPO antibody 387 (<34)

TG antibody 205.3 (<115)

Advice appreciated as to how to approach the endo appreciated thank you

32 Replies
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Think it’s time to look for a new endo, sorry 😐

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Thanks I tried to get referred to a new endo at the hospital and the endo found out, he said I can't see anyone else but him

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Think you are entitled to a second opinion. Maybe another hospital?

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Thanks I asked GP to refer me to another hospital and she said she wants to see bloods first

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Sack Him. He is ruining your health.

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Hi Shaws thanks. I put in a complaint about him and he has been calling me every day since then. I find it very intimidating

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That is wrong unless he is afraid he will lose his livelihood but the aim is for you to be well. Can you change your hospital?

I and many others on this forum care for themselves and don't have the bother with the temperaments of those who are not helping us recover.

It is very unusual for a doctor to phone a patient every day. Maybe he thinks his job is in danger. Don't answer the phone to him. You can drop a note to let him know you aren't recovering under his care and are now a member of Thyroiduk.org.uk forum and that Thyroiduk are a charity for helping those who aren't recovering.

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The GP wants to see my new bloods first before referring me anywhere. They were done a week ago and had TSH FT4 FT3 done

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Was the test at the very earliest, and fasting? Did you take levo before the test? Did you have the earliest appointment?

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The test was done early morning, fasting and I didn't take Levo before the test, I had been off it for 6 weeks

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Were you off levo but taking T3?

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I was off levo and T3, I haven't taken T3 since June 2017

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So, you were taking a combination of T4/T3? but your T3 was then withdrawn but you continued to take levo at the same dose that you took along with T3 and the Endo didn't increase T4 dose to compensate for the removal of T3?

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I was taking 200mcg levo/20mcg T3. The T3 was then withdrawn and levo reduced to 150mcg

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That's ridiculous. To remove T3 which would have been the equivalent of about 80mcg of levo and also reduced levo to 150mcg from 200mcg. Leaving you short of more than 130+ thyroid hormones altogether. If we are going to have an adjustment it should be done in increments of 25mcg levo only or 1/4 tablet T3.

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I wonder if the doctor was told to withdraw your T3 as all doctors/endos, as far as I know, were instructed to withdraw T3 from patients. He might feel guilty but maybe had no option as it seems T3 withdrawal due to cost (a perfect excuse) has been widespread . I certainly don't understand removing T3 and reducing T4 - it just doesn't make sense as the patient would not feel awful.

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Totally agree!

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I could tell you how to approach him, but it may not be nice :) It is time to look for another doctor, one who knows about clinical symptoms and how to treat hypo patients until symptoms are relieved

He is one huge idiot to state that a patient who has a TSH above range that symptoms are not due to hypo. I know I could think of a few things to say to him regarding " it is time to look at other causes to my symptoms which he says are not related to thyroid disease".

Tick off your symptoms on the following link and don't believe a word he is saying. If you are on 50mcg of levo, it is a starting dose and should be increased every six weeks by 25mcg until TSH is 1 or lower, Free T4 and Free T3 in the upper part of the range.

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

Someone who is optimally medicated will have no symptoms.

Your results: TSH 5.2 (0.2 - 4.2) - too high should be 1 or lower

Both FT4 14.8 (12 - 22) and FT3 FT3 3.2 (3.1 - 6.8) -Too low should be nearer the upper part of the range.

T4 is an inactive hormone (levothyroxine). T3 is the only active thyroid hormone and it is needed in our millions of T3 receptor cells, without which we cannot function. Our brain and heart need the most. So he has not provided your body with sufficient thyroid hormones and thus is causing you to have symptoms.

I am not medically qualified and have hypothyroidism. Others will confirm that you have hashimoto's which is due to having thyroid antibodies in the blood, the commonest form of hypothyroidism. Going gluten-free can help reduce antibodies which attack your gland until hypo but treatment is the same. It is commonly called Hashi's.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards. Food can interfere with the uptake of hormons, so leave a gap of 1 hour between dose and eating, usually breakfast.

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Thanks my dose was reduced from 200mcg levo and 20mcg T3 to just 50mcg levo

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All thyroid bloods done fasting, early morning and leaving off thyroid medication for 24 hours and I always leave 2 hours between levo and food and drink

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Another link and you will probably know more than he does by the time other members respond.

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

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Would the GP be waiting to tell me about results until my appointment with her in 2 weeks if they came back abnormal?

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Can’t you get another doctor you have been woefully mistreated

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Trying to get a new endo but doctor wants to see new bloods first

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I understood it was your right to request a second opinion. You should get the list of medics from Thyroid UK and try and see one of those endos. I don’t understand the stalling technique by your GP. It seems very controlling behaviour.

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Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working. Highly likely to have very low levels as you are now under medicated

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

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)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Also request list of recommended thyroid specialists

You are entitled to a second opinion

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

But with Hashimoto's we must get vitamins optimal m TSH down to around one and FT4 towards top of range. Many many also need to be strictly gluten free as well

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I have these

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Calling you every day is harassement. He's just trying to cover his own backside because he fears he's made a mistake and he's trying to intimidate you. Your symptoms are, in the main due to low thyroid, but he doesn't know anything about hypo symptoms. Plus he horrendous dosing technics. I think you ought to write a formal complaint about him, to the hospital management.

Haven said that, have you had your nutrients tested? Because some of your symptoms could be due to nutritional deficiencies. You need vit D, vit B12, folate and ferritin. These could all be low due to you being hypo. :)

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I have these

Thanks

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And? Are you not going to share them with us? :)

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I posted them

Thanks

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OK

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