Thyroid UK
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When to see another endo

Hi I am new to the community so please bear with me. I have positive thyroid peroxidase antibodies found in 2012. Thyroid peroxidase antibodies 890 (<34) 6 months later was put on levo as TSH was 38 (0.2 - 4.2) FT4 10.8 (12 - 22)

Was referred to endo number 1 who only tested TSH and did not adjust dose. I was not happy about this so I complained and she had me discharged in 2014.

Endo number 2 in 2015 was happy to adjust dose based on how I felt but she then left the hospital and I was transferred to endo number 3 who I started seeing in 2017.

Endo number 3 shouted at me at the first appointment and suggested I have mental health problems since I overdosed on levo. He was adjusting my dose but he has told me he can't understand my levels jumping about and he has stopped adjusting my dose and is not returning my calls when I have been feeling unwell and right now I feel awful.

I am tired of feeling like a nuisance patient which I now feel I am and have nowhere to turn.

Time to see a new endo?

Thankyou

Dec 2017

TSH 6.2 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.6 (3.1 - 6.8)

33 Replies
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Hi and Welcome ...

You are one of many people finding this forum having experienced poor treatment from an Endo. It is disgraceful and shows how little they know about the thyroid and its effects on the body. You are not a nuisance - so please keep asking questions here as often as you like and there will always be someone around to support with some advice. You can click onto peoples names to read their Bio's and learn more about the many members.

You have Hashimotos - auto-immune thryoiditis as confirmed by the over range anti-bodies. You need a dose increase - what are you taking ? The TSH needs to be 1 or under and the FT4 and FT3 in the upper part of the range.

Are you gluten free ? This may help to reduce anti-bodies as gluten can cause inflammation on the gut. Lots to read and learn both here and on the internet. Izabella Wentz is one place you could start.

Also B12 - Folate - Ferritin - VitD - need to be tested - or if you already have results post them for people to comment.

You will learn everything you need to know from members here - who know far more than most GP's and Endos - the latter seem to be diabetic specialists and know very little about the Thyroid. I have also read they are not that good at diabetes either :-(

The link below takes you to the main website of this forum - lots of info including Private Home Testing Kits - under About Testing - on the Menu.

thyroiduk.org

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Thankyou not gluten free as doing test for coeliac. I take 25mcg Teva (I am lactose intolerant), reason being I felt very unwell on higher doses of it. I have explained to endo number 3 and he says if symptoms continue to go back to normal levo which contains lactose. So I cannot take either :(

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Have you had the vitamins and minerals tested - mentioned in my earlier reply ?

Testing for coeliac can produce false negatives. SlowDragon has explained below about Hashi's and gluten sensitivity. You may get a negative result but still be gluten sensitive. I am Gluten Free but have not been tested ! The American Testing is more thorough than the testing in the UK - I believe it is now available Privately with Regenerus Labs.

Are you taking any supplements or any other medications ?

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Thankyou I take the following and they have been checked:

Folic acid 5mg

Vitamin B12 injections once every 3 months

Vitamin D 1000iu

Ferrous fumarate 210mg once a day

No other medications

Sorry brain not working that well at the moment

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Do you have the results of the above before you started supplementing ?

Do you take a B complex giving you Folate/folic Acid to work with the B12 injections ?

Do you take VitC with the FF to aid absorption ?

1000 IU;s D3 is a maintenance dose - maybe you need more. Taking co-factors ?

Yes I too have Hashimotos - B12 deficiency with weekly injections - Crohns - and symptoms of old age .... :-)

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Thankyou, will give results now:

Before supplementing with ferrous fumarate once a day with no vitamin C (I wasn't told to take vit C with it) -

Dec 2013

Ferritin 15 (30 - 400)

Iron infusion done in May 2016, iron represcribed in August 2017 and actively monitored for this every 3 months, next test due March 2018

Dec 2017

Ferritin

Before supplementing with folic acid 5mg once a day with no B complex (I wasn't told to take a B complex)

Nov 2016

Folate 2.2 (2.5 - 19.5)

Dec 2017

Folate 2.3 (2.5 - 19.5)

Before B12 injections, given then due to B12 deficiency symptoms. Dizziness upon standing improved within a week of having latest B12 injection

Mar 2016

Vitamin B12 261 (190 - 900)

Dec 2017

Vitamin B12 445 (190 - 900)

Before vit D 800iu which was prescribed, increased it to 1000iu with an oral spray by Better You in March 2015, not aware of cofactors

Dec 2013

Vitamin D total 30.5 (25 - 50 deficiency)

Dec 2017

Vitamin D total 60.2 (50 - 75 suboptimal)

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Lots of advice given here on the Forum is patient to patient - those who have travelled the long road to wellness - and we share little tips that improve matters. I call it fine tuning and they can make a huge difference.

I would increase your VitD to 4000 iu's and take Magnesium and VitK2-MK7 as they are co-factors. Next time you have blood tests add on calcium testing as VitD improves levels of Calcium and you do not need too much.

Ferritin - is iron stored as a type of protein in the liver and differs from the serum Iron. When Ferritin is low there is nothing in store for when the body asks for more iron. Glad you are being monitored. Keep on with the VitC or start it - with each dose of iron supplement.

Once you are having B12 injections further testing is of little value as results are skewed. I would supplement B12 in the form of a lozenge in between injections - to be kept under the tongue until dissolved. Jarrow Methylcobalamin B12 5000 mcg from Amazon are well used on this forum. Your B12 is dropping quite quickly and would be better nearer the top of the range.

Because your Folate is low that could be one small reason why B12 is quickly leaving the body as the two work together and the Folic Acid/B9 helps B12 to stay a little longer I have read.

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Absolutely yes. A medical professional should never shout at a patient. An endocrinologist is not qualified to diagnose mental health issues.

Your results show you are extremely under medicated

What dose are you taking? Has it been reduced recently or have you had T3 started and then stopped?

You need 25mcg dose increase in Levo and bloods retested in 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Dose should be increased in 25mcg steps, retested 6-8 weeks after each dose increase, until TSH is around or just under one and FT4 towards top of range and FT3 at least half way in range

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 the list of recommended thyroid specialists

Your high thyroid antibodies, confirms that you have Hashimoto's also called autoimmune thyroid disease

About 90% of all 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

Your vitamin levels are very likely too low as you are 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

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

Ask GP for coeliac blood test first

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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...

thyroidpharmacist.com/artic...

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Thankyou not gluten free as doing test for coeliac. I take 25mcg Teva (I am lactose intolerant), reason being I felt very unwell on higher doses of it. I have explained to endo number 3 and he says if symptoms continue to go back to normal levo which contains lactose. So I cannot take either :(

Endo number 3 took me off T3 which endo number 2 prescribed

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Jinna,

How did you feel on the Levothyroxine and T3 before you switched to Teva? Although Teva is lactose-free it doesn't suit a lot of people.

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Thankyou I felt a lot better

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Jinna,

The other 3 brands of Levothyroxine in the UK contain lactose and T3 contains lactose too but there is obviously such a small trace of it in them that it didn't affect you. So switch back to whatever brand and dose of Levothyroxine you were taking before Teva.

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Thankyou I was taking lactose free T3 and levo and it was not Teva levo

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"Endo number 3 shouted at me at the first appointment"

How dare they! Just how flipping dare they!

We are hearing far too much of this. No doctor has the right to shout at a patient, they are bullies. If they can't talk calmly to a patient and discuss the matter properly then they are the ones with the mental health problems.

Shout back people, shout back. Don't stand for it. Tell them they are bullying you and verbally abusing you and you deserve as much respect as they do. Walk out and let your parting shot be that you are going to make a formal complaint about their bullying attitude.

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This is about 5th or 6th saying same

Endos are getting backed into corner by more informed patients

Ideally Always take supportive friend or family member as a witness or record the consultation

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Thankyou I have no supportive friends or family members and I explained to endo's secretary in an email Monday about problems taking the Teva, the endo's secretary has gotten back to me in an email to say the endo has said for me to take the normal levo which I cannot do since I am lactose intolerant, the endo knows I am lactose intolerant and I get the impression he is trying to kill me

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Is there anyone who can just sit in the room with you, they don't have to understand your thyroid disorder, nor do they have to comment on anything to do with your thyroid. Their very presence WILL make a difference to how you are spoken to by the doctor. If there is absolutely no-one, then do as SlowDragon says and record the conversation, on your phone or I believe you can buy small recorder type gadgets (Amazon??) for not too much money. Just say "I am recording this consultation because I can never remember everything that is discussed" - that's all and the endo will be careful of what they say. Alternatively, if you prefer, record covertly without telling them and you would then have proof of how you have been spoken to.

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Thankyou there are work friends who have noticed my quality life is just next to nothing at the moment

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So was I likely overmedicated as my current endo has said I was? I did not feel overmedicated at the time and the endo said he didn't care how I was feeling.

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Jinna,

You haven't posted those results and ranges so we can't tell. If your FT4 and FT3 were over range you were biologically overmedicated whether you felt it or not.

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TSH 0.02 (0.2 - 4.2)

FT4 22.8 (12 - 22)

FT3 4.3 (3.1 - 6.8)

Thankyou

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Jinna,

TSH was suppressed and FT4 mildly over range. No reason for your endo to get out his/her pram about those results. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your endo.

Endo could simply have recommended you reduce dose. It's up to you whether to take the advice or not. If you chose not to endo could have discharged you but s/he is not entitled to shout at you.

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Thankyou they were taken when I was on levo and T3 and done in 2016, endo number 2 was happy with them

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Jinna,

Unfortunately doctors treatment plans and opinions differ. It's a great shame when they change a treatment regime on which the patient feels well because of they don't approve of a therapy.

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These look like good results. You could do with a little more T3 to raise the freeT3, and might as well drop the T4 a little.

Unlike your current results, that look terribly undermedicated :( 25mcg of T4 is a piddling tiny dose :(

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I did not feel overmedicated

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Hi Jinna

I’ve got Hashimoto’s and regardless of testing positive to celiac (mine came back negative) I went gluten free, this has helped me no end.

I’m having more in dept allergy testing and I’m waiting for the gluten one to come through, so it may say I am.

Anyway, unfortunately it’s a case of having to take matters into your own hands it’s your health and well-being, and it’s not all in your head either.

I’ve learnt my lesson (expensive one) that private Endocrinologist are no help.

GP’s blame it on anxiety and it’s all in your head. You only have to look at the posts on here about peoples experiences.

I’ve had some fantastic advice on here, in fact more advice on here than what my Endocrinologist gave me.

One thing that is important as other experienced members will advise is to make sure all your vitamin levels are correct.

Perhaps pay for private bloods (thyroid, vitamins) and post them on here.

Loads of people have been left with no choice but,to self medicate in order to get there life back

Best Wishes

Peanut31

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Thankyou I supplement vit D, folate, B12 and iron and GP is happy to monitor me for everything including thyroid

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Jinna,

I wouldn't go back to a doctor who shouted at me. Why don't you dump the endo and let your GP treat you? Most hypothyroidism is managed by GPs in primary care. Do be sure to complain about the endo's bullying to the head of endocrinology or the hospital PALS.

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Thankyou I am intending on starting over with a new GP since my current ones do not believe I am diagnosed hypothyroid

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Jinna,

Why are they prescribing Levothyroxine if they don't believe you are hypothyroid? Don't they have your medical records? Your results at diagnosis showed overt primary hypothyroidism.

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lab report says not monitored or on levo

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Jinna,

That's irrelevant. Just means the lab hasn't been informed that you are taking Levothyroxine and hasn't made a record of your previous blood tests via the practice. It doesn't mean your GP practice doesn't think you are hypothyroid.

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