Endo questioning my compliance: Hi why would my... - Thyroid UK

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Endo questioning my compliance

LauraJ95
LauraJ95

Hi why would my endo do this please? He says he doubts I am taking my levothyroxine every day and is not increasing my dose because of this. Please advise. Diagnosed 2010 with hypothyroid taking 175mcg.

DEC 2017

TSH 5.80 (0.2 - 4.2)

FREE T4 14.8 (12 - 22)

FREE T3 3.4 (3.1 - 6.8)

23 Replies
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SlowDragon
SlowDragonAdministrator

Presumably you have Hashimoto's diagnosed by high thyroid antibodies?

Your results show you are under medicated

Probably also have low vitamin levels

See this almost identical post just now

healthunlocked.com/thyroidu...

LauraJ95
LauraJ95 in reply to SlowDragon

Thyroid peroxidase antibody 884.3 (<34)

Thyroglobulin antibody 1200 (<115

Told Graves disease

Anthea55
Anthea55 in reply to LauraJ95

As I understand it,

high antibodies with hyPOthyroidism is Hashimotos.

Graves is related to hyPERthyroidism.

If it was the endo told you it was Graves, he must be a diabetic specialist, not a thyroid specialist.

greygoose
greygoose in reply to LauraJ95

Your endo is an idiot! lol That is not Grave's, that is Hashi's. With Grave's you would have a suppressed TSH and very high Frees.

Why would he question your compliance? Because he doesn't have the competence to understand why you have such a high TSH and low Frees on that dose - which, whilst not excessively high, is moderately so. He doesn't understand about absorption problems, so is just making excuses and patient-blaming, to cover-up his lack of knowledge. They all do it! Well, quite a lot of them, anyway.

SlowDragon
SlowDragonAdministrator in reply to LauraJ95

Run a million miles from an endo that thinks these results are Graves' disease.

They have absolutely no idea what they are doing

Your Endo is a sadist, he has no right to question your compliance. If he asked and you replied you take levothyroxine every day then he has no grounds to dispute your honesty. Refusing you the medication you need is cruel and causes unnecessary suffering, even dogs are treated better. Maybe we should all visit the vet!!

Bunnyjean
Bunnyjean in reply to Nanaedake

The best advice today!! A visit to the Vet.

Hidden
Hidden

If a patient doesn't seem to be responding as well as might be expected to the treatment prescribed, it's perfectly reasonable for a Dr to check the patient's understanding of, and compliance with, the medication regime. It would be silly, even negligent for them not to. After all, symptoms of thyroid disease commonly include brain fog and memory problems, so patients forget; and of course many patients actually are non-compliant for any number of reasons - we read here of people stopping taking their meds because they don't like how they make them feel. Speaking for myself I find it very challenging trying to dose my beta blockers 4 X daily and often manage only 3 - my Cardio "gets it" very well, and said "oh no, I bet that buggers up your day"! But if the patient confirms their understanding of, and compliance with the regime, then the Dr should look at other causes for seemingly skewed blood results or lack of progress. Unfortunately though, relationships can break down and sometimes it's better to go elsewhere, if your GP is willing to refer you to another Endo, or maybe you could see someone else in the same team.

LauraJ95
LauraJ95 in reply to Hidden

Thanks. GP is also calling me a liar

SlowDragon
SlowDragonAdministrator in reply to LauraJ95

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Find a different GP too

You need vitamins tested, and coeliac test too

This is a shameful way to be treated. It makes me furious.

I believe you can demand a second opinion but you need to know you will see a competent Endo who knows what they are doing and treats their patients with respect.

If you can’t get anywhere I would self medicate with NDT if this is the supposed care you are receiving on the NHS.

I would definitely write to my MP and complain if it were me.

If it makes you feel any better all the doctor s inferred, insinuated or directly said I wasn't taking my Levothyroxine. I never missed a day and always left an hour after eating. I was told to stop drinking caffeine which I already had done. Told to exercise more, which I was too ill to do and various other things. It turned out the Levothyroxine was faulty over a period of 6 years.

If you have antibodies more likely a result of autoimmune activity but worth considering it could be the way the tablets work too.

LauraJ95
LauraJ95 in reply to Nanaedake

I don't think I have antibodies. They are not in range

Thyroid peroxidase antibody 884.3 (<34)

Thyroglobulin antibody 1200 (<115

Laura, I'm very very new to all of this but even from the comments on my initial self-ordered labs (medichecks) I've been told that I likely have Hashimotos because my 'Thyroid peroxidase antibodies' are high, well above the normal range - as are yours! I think you're misunderstanding the meaning of 'in range'. The high presence of antibodies shows that you are having an autoimmune reaction, most likely Hashimotos.

GP told me they were negative

I don't know what the GP means by 'negative' in this context. There's no such thing as negative or positive with TPOAb - they're either within or outside of the 'normal' range.

The GP using 'negative' would imply your test came back with your number of antibodies within the normal range, however yours are way way above the normal range.

(anyway just wanted to help :) will leave this to far more experienced members to comment!)

Ok thanks

shaws
shawsAdministrator in reply to LauraJ95

Change both doctor and endocrinologist as they both need retraining.

Hidden
Hidden in reply to LauraJ95

LauraJ95 "I don't think I have antibodies. They are not in range".

You do have antibodies because your numbers are outside/above the range, as indicated by the lab (normal) range being any thing below 34 and 115 respectively. The " < " means less than ie a level less than 34 is negative. As your TPO level is 884.3 you are waaaay over. So you have antibodies and therefore Hashimoto's.

LauraJ95
LauraJ95 in reply to Hidden

Ok thanks

shaws
shawsAdministrator

He doesn't deserve the title Endocrinologist as he is actually punishing you because he disbelieves you.

Did you get your blood test at the very earliest time, fasting (you can drink water) and did you allow a gap of 24 hours between last dose of levo and the test?

I see you've had good responses so far. With endocrinologists we definitely don't want one like you've had the unfortunate experience with.

LauraJ95
LauraJ95 in reply to shaws

Yes I had blood test done at 8:30 am and fasted and left 24 hours between dose and blood test

Just repeating what's already been said - your doctor/endo has NO IDEA what he's talking about. Your high antibodies mean you tested positive for HASHIMOTOS which is the most common form of HYPOthyroidism.

GRAVES is HYPERthyroidism which is the complete opposite when you have too much energy and feel "HYPER". Your lucky that ass didn't give you Cabromizole if he thinks you are HYPERthyroid which would have been a total disaster.

1. You need to increase the Levothyroxine by 25mcg and re-test in 6 weeks, increasing the dose by 25mcg increments until your TSH is below 1.

2. You might be having trouble utilising the levothyroxine because of the low vitamin/ferritin levels so you need to address this. Maybe post again asking for advice on the vitamins. Seaside Susie is really good at this.

3. Make an appointment with another doctor and complain about this one. His/her incompetence has left you unwell for 7 years.

4. Consider going gluten free and taking 200mcg of selenium every day as this will help get your antibodies down.

5. Stick to this forum. You will get a lot of support and learn a lot.

Good luck!!!!

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