What do I say to my endocrinologist?

[VIKKINDA]

Hello this is my first post and I joined to find out more about my conditions. I was told I have an overactive thyroid in May 2018 and in September saw an endo who told me I had graves and as I had osteoporosis and was on b12 injections that I most likely had thyroid problems for many years. She told me to decide what I wanted to opt for either the drink stuff or the opp and gave me a few leaflets and sent me on my way. My appointment is in a week and I am unsure what to say I don't want either. can I not just keep taking the tablets although they don't seem to be doing anything. I feel something is being missed but I don't know what. I go and have my bloods taken every 6 weeks and then get a letter telling me what dosage of my Carbimazole to take. I was on beta blockers at 160 a day but my GP is reducing this due to constant cough and I am on 40 at the minute. I have also been given Vit D tablets 1 month started this January. I have all the graves symptoms apart from goiter and bulging eyes. I just don't know what questions I am supposed to ask the endo or if I have to say yes to one of the 2 options she gave me in September. Apart from feeling awful my weight has gone threw the roof I was 8st 2 and now I am 13st 6 in well under 8 months. The extra weight is really causing my body to ache everywhere and I am worrying about the weight on my brittle bones. Any advice please Heres my blood results Free T4 normal 11.8 Free T3 at 4.2 TSH 0.6 told to reduce from 20mgs to 15mgs a day.

[SeasideSusie Remembering]

I know someone who has been on Carbimazole for many years, it suits her and even though her GP keeps pushing for her to go for RAI or thyroidectomy, she is happy on Carbimazole and tells them she will stay on it.

When you had your diagnosis of Graves, were the following antibodies tested?

•Thyroid stimulating immunoglobulin (TSI) - if raised this is diagnostic for Graves

•Thyroid stimulating hormone receptor antibody (TRAb) — less specific than TSI

Unless they were done and positive, Graves can't be definitely diagnosed.

What were your thyroid test results (and reference rangers) when given the diagnosis - TSH, FT4, FT3?

[VIKKINDA in reply to SeasideSusie]

hi Seasidesusie I haven't a clue what any readings were I was never told and did not know to ask. I had a blood test done by my GP because I was feeling really ill and she told me the readings were showing I had overactive thyroid problems and she was referring me to an endo. When I saw the endo she said the recent bloods were showing I have graves. when I asked what that were she said I will give you some leaflets and a prescription for carbimizole and told me to decide which option I was choosing for when I go for my next meeting which is a week away.

[SeasideSusie Remembering in reply to VIKKINDA]

I agree with Reallyfedup.

You need your results, ask the GP for whatever they have there, and ask the hospital if those results weren't sent through to your GP.

It's essential to know that the TSI or TRAb ones were done, without those being raised then Graves just can't be confirmed.

Hashi's antibodies (for underactive thyroid) are Thyroid Peroxidase (TPO) and Thyroglobulin (TG).

You can swing from hypo to hyper and back again with Hashi's, and it usually starts off with a "hyper" episode.

Many members here have been diagnosed with Graves and given Carbimazole, and when we eventually get to see their full test results it's very obvious they have been misdiagnosed and actually have Hashi's.

[VIKKINDA]

oh thank you for this reply my GP has told me she is confused and quite worried by my weight gain so much in such a short time and has said I am showing as if I am Hypo. At one point I recall 1 blood test showing I had gone Hypo and my med dosage changed until 6 weeks later when I was altered again. Can you tell me where do I get all my blood results from would I ask my GP I do know she has not been receiving all correspondence from the hospital or from my endo secretary? My endo is in a different borough from my home town and GP and I travel to that borough every 6 weeks for the bloods taken from the same hospital as I see the endo so would it be the endo herself who I ask for the results?

[asiatic]

I agree with the other 2 replies. Tell the doc you need more time. There is absolutely no requirement to rush into taking an irreversible decision when there is always the hope that drug treatment will help you achieve remission. It might take a while and careful monitoring to find the correct dose. I have been on block and replace for 3 years and feel fine. Your results look normal for someone on carbimazole but not quite there yet and lots more adjusting still to be done. Thyroidectomy or RAI treatment would make you hypo and requiring drug adjustments too.

[asiatic]

I agree antibody tests need to be done but would like to point out I have Graves antibodies, definitely no Hashis and yet on Carbimazole alone I became very hypothyroid and had to have levothyroxine added in as block and replace. Graves antibodies come in 3 types: blocking binding or stimulating and the one dominating can change during the course of the disease. What a nightmare it is trying to understand it all !

[SlowDragon Administrator]

Your FT3 and FT4 look very low. This plus your rapid weight gain suggests either you have Graves (hyperthyroid) and are over medicated or possibly you actually have Hashimoto's (hypothyroid) instead or as well

Hashimoto's can give similar hyperthyroid type results, especially in its early stages

We see a number of Hashimoto's patients misdiagnosed as Graves patients. It's essential to test ALL Thyroid antibodies

You are legally entitled to printed copies of your blood test results and ranges

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's (can also be raised with Graves) Also extremely important to test vitamin D, folate, ferritin and B12

Plus TSI or TRab antibodies tested for Graves

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test all antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Low vitamins are especially common with Hashimoto's or Graves. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG plus TSI or TRab thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies

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

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

List of hypothyroid symptoms

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

Persistent cough can be dairy intolerance- common with Hashimoto's

Gluten intolerance common with Hashimoto's or Graves

chriskresser.com/the-gluten...

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

[pennyannie]

Hello Vikkinda

Graves is an autoimmune disease and as such, it is for life, it's in your blood, your DNA.

There is probably some genetic predisposition maybe a generation away, and Graves can be triggered by a sudden shock, like a death or car accident.

Your thyroid is being attacked by your own immune system - it is the victim, not the cause of your illness, but since the thyroid is a major gland the symptoms you are living with can be said to be life threatening.

Simply removing the thyroid by surgery or by ablation, doesn't actually solve any problem.

All it does is give you a different set of health issues, that the medical profession believe they are able to treat more effectively.

Well, living without a thyroid is no fun, especially when you can't excess the appropriate hormone replacements.

Please do not agree to loose your thyroid, until all other options of management with anti thyroid medication are exhausted.

I read of people staying on anti thyroid medication for several years.

I read of people finding remission by making diet and life style changes.

There is more than one anti thyroid medication.

There should be a conscious effort to adjust your medication and get you comfortable.

You have received very good advice already, and it's essential to get your vitamins and minerals optimal to give your strength during this difficult period, where your body has been running very fast and now appears to have slowed down too much.

It is essential that you have a confirmed diagnosis of Graves Disease, and positive for the antibodies, TSI and or TRAb - as treatment is different if these antibodies are not found.

Professor Toft an eminent endocrinologist recently published a paper in which he states :- I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine-131- or surgery in patients with Graves Disease, irrespective of age or number of recurrences of hyperthyroidism.

The full article is on this website, somewhere, should you want to print it off :

Thyroid Hormone Replacement - A Counterblast to Guidelines :

December 2017- Journal of the Royal College of Physicians of Edinburgh :

I think this says it all, you do not need to agree to anything you are not sure about.

Graves Disease - A Practical Guide by Elaine Moore is a very good book - this lady has set up a Foundation for Graves patients and there is also a very comprehensive website :