endo says I am being noncompliant

[Blondie334]

since my results show TSH 6.5 (0.2 - 4.2) FT4 13.8 (12 - 22) on levo 50mcg. diagnosed 2013. is he right thankyou

[greygoose]

Based on what? On those results? Anyone with half a brain would expect those results on a starter dose - which is what 50 mcg is. What were your results on diagnosis?

Anyway, rather a strange question, because only you can really know whether you comply or not. You know if you take your levo every day on and empty stomach, leaving at least an hour before eating or drinking anything but water, etc...

[Blondie334 in reply to greygoose]

thankyou my results on diagnosis were TSH 66.7 (0.2 - 4.2) FT4 10.2 (12 - 22) and I always take my levo every day on an empty stomach leaving an hour or more before drinking and eating

[greygoose in reply to Blondie334]

Then you are compliant. And, he's an idiot. You are also under-medicated, and need an increase in dose.

Have you been on 50 mcg since 2013?

[Blondie334 in reply to greygoose]

thankyou yes I have been on 50mcg since then

[greygoose in reply to Blondie334]

Then your endo is also guilty of negligence. He should have retested you six weeks after starting levo, and increased your dose by 25 mcg, and continued like that until you were well again.

I think you should write a letter of complaint to his superior. He has no idea how to treat thyroid, and prefers to blame the patient, instead!

[shaws Administrator]

You are right and he is definitely wrong. He's given you a starting dose and kept you on it. Whereas you should have had a blood test every six weeks with an increase of 25mcg until you are symptom-free and feel much better. TSH should be 1 or lower with a Free T4 and Free T3 in the upper part of the range. I bet by reading the latter sentence you now know more than the Endo.

He is damaging your health. No doubt about that as you do not have sufficient thyroid hormones to give you the amount of T3 that you require. Levothyroxine is T4, T4 has to convert to T3 and T3 is the only active thyroid hormone and is needed in our millions of T3 receptor cells.

Blood tests have always to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take afterwards.

This gives us the more accurate test as TSH drops throughout the day. Most Endos only look at the TSH and T4 and if they are in the 'normal' range they stop increasing dose.

They should test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Also ask for B12, Vit D, iron, ferritin and folate at your next test and get a print-out of your results, with the ranges and post for comments.

[Blondie334 in reply to shaws]

thankyou thyroid antibodies are 679 (<34)

[Blondie334]

have been on 50mcg since 2013 because of symptoms of sweats and tremor and insomnia is it ok to increase thankyou

[humanbean in reply to Blondie334]

Yes it is. The sweating, tremors and insomnia could well be direct effects of too low a dose of thyroid hormones.

Alternatively, and another very common scenario, is that your body is doing everything it can to keep you going despite your low thyroid hormones, and it is doing this by increasing your levels of cortisol and adrenaline. With higher than normal levels of cortisol and adrenaline you are likely to have sweating problems, tremors and insomnia. Cortisol and adrenaline are not good substitutes for thyroid hormones.

Eventually the body might be unable to keep producing so much cortisol and adrenaline and the cortisol starts to drop. Then the adrenaline is the only thing keeping you going. When you get that far you would probably be bedridden or at least housebound because you would be so unwell.

[SlowDragon Administrator in reply to Blondie334]

These symptoms are likely due to low vitamin D, folate, ferritin and B12

If any of these is too low they stop Thyroid hormones working

Have they been tested if so post results and ranges

If not, request GP tests urgently

50mcg is standard starter dose, this is normally increased in 25mcg steps, retesting 6-8 weeks after each dose increase until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Low vitamins are direct result of under medication

I am guessing you also have high thyroid antibodies as well. Post results if you have them

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

Low vitamin levels stop Thyroid hormone 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...

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists [e-mail]

[shaws Administrator in reply to Blondie334]

humanbean has given you a perfect response. Your antibodies are high and can be helped to reduce by going gluten-free.

[marsaday]

Non compliance is his get out clause to stop further investigation. To fully understand and get you well takes much more time and effort. He has simply fobbed you off. Start doing some research so you can stand up to this plonker.

The NHS is over run and this is a classic doctor trying to just pass you out of his office. It is happening everyday with thousands of patients. It actually isn't the doctors fault, but the crappy centralised system. We need a radical change in how the NHS is delivered. Rant over, sorry as not really relevant here.

[waveylines]

Though I disagree over the bit that its not the doctors fault -endocrinologist in this case. He/Sheis a specialist & most certainly should know basic knowledge about the treatment of an under active thyroid. It is not rocket science!! That specialist will be causing massive damage to all thyroid patients that are referred through. Worse still will be misleading GPs further spreading nonsense about effective treatment. Disgusting!!

[bluebug in reply to waveylines]

Endo is likely a diabetes specialist. So knowing very little about the thyroid they are trying to get rid of the patient.

[Gambit62]

noncompliant implies that you are not taking the medication as prescribed - not something that can be diagnosed from test results.

as said below - it does sound like an excuse for not treating you properly - your results aren't right and it can't be that we have you on the wrong (too low) a dose so it must be that you aren't taking your medication properly.

Did they ask you about how and when you take your medication at all - or did they just jump to conclusions (which would be extremely unprofessional of them).

[Blondie334 in reply to Gambit62]

No they didn't ask me how to take my medication

[Gambit62 in reply to Blondie334]

I rest my case.

[SlowDragon Administrator in reply to Blondie334]

Blondie334

Make an urgent appointment with your GP.

Say you have had advice from the NHS recommended thyroid support group

You need 25mcg dose increase in Levothyroxine.

Your GP should know you are under medicated

Could they please also test vitamin D, folate, ferritin and B12 asap

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

[susieanna]

do a formal complaint; do it; he is obviously incompetent. and treating you like crap. its NOT ACCEPTABLE. You can get complaints procedure forms from hospital you are being treated at web sites. sounds like he needs to be struck off.

[Hidden]

The next time that any Doctor/Endo's or anyone in so called authority call you names without justification please just say this. Clearly and slowly looking them in the eye. I would like to put that in writing for me for future reference. Don't forgot to say thank you and say his name. It's called assertiveness and the more you practice the easier it gets.

[klr31]

I was left on 50mcg thyroxine by my doctor for five years too until I was very ill and had to pay to see an Endocrinologist.

Karen