Worried about endo appointment

[J2202]

Hi, I am new and I am worried about my upcoming endo appointment which is next week. Basically this endo shouted at me for having thyrotoxic results and reduced my meds. Then I became very badly hypo and he has now been asking me if I have been taking the meds as he has advised. He has written to my GP to say my symptoms are likely not hypothyroid (puffy face, puffy eyes, constipation, feeling cold, tiredness, heavy periods, hair loss, breathlessness, low pulse) and the thing I am most anxious about is if my new results come back normal will he go back to saying my symptoms are not hypothyroid again? Diagnosed 2011 with hypothyroid and taking 100mcg levo.

Advice appreciated

TSH 5.6 (0.2 - 4.2 mIU/L)

Free T4 13.9 (12 - 22 pmol/L)

Free T3 3.4 (3.1 - 6.8 pmol/L)

[Nanaedake]

Hi, and welcome J2202. I don't know if it helps but we've had at least 10 to 12 people in the last couple of weeks who's Endo has shouted at them for supposedly being thyrotoxic.

firstly it's ridiculous, unforgiveable and unprofessional to shout at patients for something which is not their fault!!

Secondly, when we've viewed people's results here the Endo hass been clearly wrong!

Usually we find people's FT4 and FT3 are still in range which means they're not thyrotoxic, they just have a low TSH which is not a problem if FT4 and FT3 are in range.

Were you prescribed T3 and now had it removed? If so, you should know that Endo's have been given targets to get people off T3 medication so they are using the 'excuse' that thyroid patients are thyrotoxic and blaming them when it's simply not true.

What does it matter whether it's hypothyroidism that's causing your symptoms or not, the fact of the matter is that you have symptoms and they need investigating. Your last results showed you were hypothyroid so of course you will have symptoms. If your next results show that your results are normal but you sstill have symptoms then you need more investigations to find out why you still have symptoms. Start by getting all your vitamin levels tested.

Vitamin D

B12

Folate

Ferritin

And do you have thyroid antibodies?

[J2202 in reply to Nanaedake]

No I have never had T3 prescribed.

TPO antibodies 375 (<34 IU/mL)

TG antibodies 256.3 (<115 IU/mL)

[Nanaedake in reply to J2202]

Well, your Endo clearly knows nothing about thyroid hormones. Have you been told you have Hashimotos, doctors usually call it autoimmune thyroid disease.

[J2202 in reply to Nanaedake]

I have never been told by an endo I have Hashimotos

[Nanaedake in reply to J2202]

Well, it will be very interesting to ask the Endo what he/she knows about Hashimotos and see what they say. You can read up all about it on Thyroid UK website.

Basically, when you have Hashimotos then thyroid antibodies slowly destroy your thyroid cells leading to increasing hypothyroidism and decreasing thyroid volume. When the antibodies attack the thyroid, the dying cells release high levels of hormone which reduces your TSH level and makes you feel a little overactive. When the attack dies down you become hypothyroid again and perhaps a little more hypothyroid with a little more reduced thyroid volume.

Therefore your blood test results can vary with the activity of antibodies. You may sometimes need to reduce thyroid meds by 25mcg while under attack and then resume the dose in a few weeks when things have settled down.

Ask your Endo to explain Hashimotos disease. If he hasn't heard of it then ask him to explain how autoimmune thyroid disease affects the thyroid gland, the patients health and vitamin levels. It will be revealing to hear what he says. If he gives you a load of gobbledygook you'll know you've got to find a new Endo. Most know diddly squat about thyroid hormones because they are diabetic specialists.

[J2202 in reply to Nanaedake]

Taking 800iu vitamin D/5mg folic acid and B12 injections as well

[Nanaedake in reply to J2202]

And what were your last vitamin blood test results like? 800iu vitamin D is not enough to help a deficient mouse.

[J2202 in reply to Nanaedake]

Thanks for reply

June 2017

VITAMIN D TOTAL 44.2 (25 - 50 nnmol/L vitamin D deficiency. Supplementation is indicated)

February 2017

VITAMIN B12 336 (190 - 900 pg/L) before B12 injection

June 2017

FOLATE 2.2 (2.5 - 19.5 ng/L) been put on folic acid and then taken off it and put back on it again

June 2017

FERRITIN 62 (30 - 400 ng/L) meant to be on iron tablets for iron deficiency but they upset my stomach

[Nanaedake in reply to J2202]

Well, there you go, vitamin D 800iu is hardly touching your deficiency. You need to follow SeasideSusie vitamins advice for vitamin D deficiency. I'll find a link to one of her posts in a minute.

healthunlocked.com/thyroidu...

If you're taking vitamin B12 and folate you need to also take a good B complex to balance all the B's.

Ferritin needs to be 70 or mid-range for thyroid hormone to work best. There are a lot of varieties of iron so if one kind doesn't suit you then you need to try another variety.

I take Spatone liquid iron to top up.

Make sure you leave 4 hours after taking thyroid meds before taking any meds or supplements. And 6 hours for iron.

[Millea]

Hi there. I can see from this feed that you are getting lots of advice re your condition. I want to advise you that you are totally allowed to have a relative or friend attend your appointment with you. It is always useful to have this support and also to have someone there who can discuss what was said after the meeting. It is appalling that your endo shouted at you. Having a support witness with you will send a clear message to the endo that they need to deal with you in a constructive and polite way.

[liz1952]

ANOTHER ONE ????? What is the matter with these people ...shouting at you? Shouting? How dare he? He is supposed to support/diagnose and be pleasant and polite at all times. How dare he shout at you? Can you take someone else with you for support? (A wrestler or body builder preferably....!). Let us know how you get on and that you have loads of help and support here x

[Hidden]

If you were thyroid toxic you would know about it and it is not something your blood results indicate by any means. The blood results clearly indicate that you need more thyroid hormones and your TSH needs to be much lower. Most people feel well with a tsh of around 1 or under and with a T4 at the top of the range. At 5 you are not even in range inmost parts of uk and Uk labs have a wider range than a lot of other countrys. In america you would be diagnosed as hypo with tsh of 3.I would not bother to go to your appointment. The endo is clearly incompetant and rude. I suggest that you either get the list of recommended doctors from thyroid uK website ( you will need to email) and pay for some decent care or I think they have a list of NHS docs who have been more helpful or have a chat with GP,ask GP if he knows what hashimotos is and maybe if he has ever prescribed T3 and if he is positive about these things ask for him to supervise your care. Also take advice given re vitamins. Often endo cause more problems than they solve as often they will give an opinion that GP feels he or she has to follow and they provide evidence, usually flawed to not treat or under treat.

Iam wondering why all the endos are having a go at patients for being thyrotoxic when they are not. Probably some poor training and I suspect weetabix again.

[Geniler]

Please don’t accept that it’s ok for a GP or and endo to shout at you or to treat you in the way you have described. If you are in the UK, it is our taxes that pay for the NHS and subsequently these health ‘professionals’. Get educated about your condition and you’ll find you will know more than most doctors. Don’t blindly believe what they say, most have almost no knowledge of thyroid disfunction. I have found taking NDT, eliminating all grains and dairy as well as no sugar or alcohol has helped me regain my health. This site and the many amazing people who contribute to it will be able to help you find your way. Become your own health expert and challenge any doctor who won’t listen to you. Best of luck.

[Zephyrbear]

Next time he shouts at you, calmly suggest he might want to take himself off into a quiet, dark corner and have a strong word with himself about his manners. Nobody deserves being shouted at and made to feel like an insignificant speck of dirt by somebody who is being paid by the taxes the patient in front of him is paying! We are already at a very vulnerable disadvantage when we feel like shit, and when we are then subjected to a tirade like this from someone who is supposed to be helping us could destroy us completely! There is no excuse for this type of behaviour from anyone, especially when their level of knowledge about your condition is wayyyy below yours! 😡😡😡

[OzoneGirl]

Dear J2202,

Other people have suggested this too: my advice is to take someone to the appointment with you - preferably an elderly relative and/or someone who has enough presence to intimidate the endo' or at least put him on his best behaviour!

Even I can see from your results that you're under-medicated because your TSH is too high. You need more T4, not less!

Suggest you read up on here what your thyroid test results mean so that you can demonstrate to endo' that you know what you're talking about.

Also agree with the suggestion to find another endo' who actually knows about the Thyroid!

Big hugs,

[Maggimay in reply to OzoneGirl]

Hi Good advice from folks that know their stuff. I know nothing about that but have been shouted at by docs in past. I know how awful it is. Agree with otherss that it is totally unacceptable. I always take another person with me now. Have got the list from on here of endos from Louise lf you want list ask for her last name another post Roberts l am thinking but brain not great. I have referalll but no appoint yet. Anyway hope this of some help l don't comment much as not well up like many on here but l do know how it feels to be blamed by docs for being Iil so just wanted to offer support on that disgrace. Message me if you want a natter Best wishes.

[Angel_of_the_North]

Well, those are classic hypo symptoms so what else does he think they are? Sound slike a diabetes specilaist with little knowledge of thyroid. Your TSH is over range and your frees are rock bottom of range. You are obviously undermedicated. Can't you see someone else?