Thyroid ultrasound scan : Following my... - Thyroid UK

Thyroid UK

141,183 members166,422 posts

Thyroid ultrasound scan

Angel20 profile image
101 Replies

Following my appointment with the Endocrinologist in January 2020 the next steps were to have a Thyroid ultrasound scan to evaluate abnormalities and then discuss further treatment etc after scan results.

How accurate are the scan results, I say this because my GP ordered a thyroid ultrasound scan December 2018 which baffled me as the scan results suspected Hashimoto's Disease and further investigations were required.

Fast forward in March 2020 I have an appointment for a an ultrasound scan requested by my Endo and hopefully I can compare the December 2018 scan results with the March 2020 results.

I was told in January 2019 by an Endocrinologist that I have Graves Disease and yet he only made this assessment just by blood tests. He totally ignored the ultrasound scan 2018 and wanted me to start Carbimazole which I did not take.

Whilst I was away in Cyprus for a short break a message from the GP's surgery asking me to collect 10mb Carbimazole from the chemist before the thyroid ultrasound scan. Why would I want to do this when I have been living with Graves if this is what it is from 2017 and I feel fine and without having scan results. Why do Endocrinologists rush into medication without evaluating the patient. This is why more people are not trusting them, the protocol they are following is not fit for all and specifically when he and I, discussed that the investigations will be done first before even considering any form of medication as I am not unwell, as the Endo stated to me that my body adjusted to the low TSH.

Can I ask you what do you think about this approach and whether you had an ultrasound scan was it beneficial to you.

Thank you

Written by
Angel20 profile image
Angel20
To view profiles and participate in discussions please or .
Read more about...
101 Replies
LivingWithHT profile image
LivingWithHT

Lol, wow. You were diagnosed as possibly having Hashimoto’s and THEN Graves’ disease? Goodness. Those are two polar opposites, and while they do share similar symptoms, they are hard to mistake if thorough and proper testing was done. Also, there are certain symptoms that you can use to tell them apart. For example, you said you feel fine. Well, people with hypothyroidism rarely ever feel fine without optimal medication and supplementation. You will always feel or have some sort of fatigue, hair loss, brain fog or body temperature regulation issues before you are officially diagnosed as having hypothyroidism and/or Hashimoto’s by a doctor that only goes by test results. So, if you’re not experiencing any of those symptoms (or any other telling symptoms) then you are likely borderline Graves’...and may or may not be on your way to having a more obvious version of it.

Your weight, or any weight gain or loss, is not always a clear indicator of which one you may have. Your metabolism is, though. For example, unless you are genetically blessed with a fast metabolism from one or both of your parents, having an overactive metabolism can indicate hyperthyroidism because of Graves’. Many people with Graves’ tend to have a hard time putting on weight or muscle, even if they eat a lot or work out regularly.

Another thing to keep in mind (and to confuse you more 😄) is that if you have Hashimoto’s or Graves’, you can still have a hyper or hypo swing. Your results can show you suddenly have Graves’ when you were initially diagnosed with Hashimoto’s and vice versa. What really matters is how you feel and the symptoms you are experiencing because blood tests almost never show the full picture, I have been learning so much more about that aspect lately.

I agree that quickly resorting to the usually prescribed medication without further testing is not the best method.

LivingWithHT profile image
LivingWithHT in reply toLivingWithHT

Forgot to add: displaying your most recent thyroid tests may help us give you better advice. Having a low TSH, even one as low as 0.005 or lower, does not indicate Graves’. You need to look at your FT4 and FT3 and also your thyroid antibodies.

So, if your doctor prescribed Carbimazole based on low TSH, without even bothering to test anything else, then he is clearly ignorant on the topic and you had every right not to immediately start taking it.

Angel20 profile image
Angel20 in reply toLivingWithHT

In 2017 I had slight hand tremor in both hands when stretched out. I did loose weight and some muscle loosing some hair too. Did not experience fast heart rate, sweating. I left it until 2019 i.e two years later.

Now 2020 I feel well, I eat and put on some weight.

The blood tests have remained the same for the past 3 years there is no change, these have not gone up nor down. The latest blood tests January 2020 done privately as I have not seen the NHS blood test results yet.

COELIAC SCREEN

AntiTissueTransglutaminase IgA 0.9 (<7) [ U/mL ]

Serologically negative for coeliac disease.

(assuming patient is currently on a gluten

containing diet).

Indeterminate range 7 - 10 U/ml

Positive > 10 U/ml

FERRITIN

Ferritin 20 (13 - 150) [ ug/L ]

TSH <0.01 (0.27 - 4.20)

Free T3 27.7 (3.1 - 6.8) [ pmol/L ]

Free T4 59.2 (12.0 - 22.0) [ pmol/L ]

I am taking vitamins and eating healthy.

LivingWithHT profile image
LivingWithHT in reply toAngel20

Looking at your test results and based on them alone, it shows that you clearly have Graves’. Your Ferritin is also very low, many feel better when it is at least in the middle of the range or higher, myself included.

Have you tested your vitamin D and B12 levels recently? Deficiency in either of those can cause or aggravate thyroid disease symptoms. Both of those are advised to be maintained in the middle of the range, too. Some need them higher to feel optimally medicated.

Angel20 profile image
Angel20 in reply toLivingWithHT

Ferritin is low so I am taking a low dosage of iron as for B12 no I have not had it tested and I need to do this privately. Thank you for that.

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Ferritin and iron are very complex

You can have low ferritin and high iron. Before starting on iron supplements you should do full iron panel test

Links about iron and ferritin

irondisorders.org/Websites/...

Ferritin can be low due to low B12

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Cheapest test is Medichecks thyroid plus ultra vitamin

Obviously low vitamin D is widespread. But is especially common with hashimoto’s or Graves

High thyroid levels can rapidly cause osteoporosis. So extremely important to have optimal vitamin D and magnesium levels

Osteoporosis

thyroidpatients.ca/2018/07/...

in reply toAngel20

Folate levels should be tested as well as B12. Sometimes people have several autoimmune diseases. Pernicious anaemia is one which is dependant on optimal levels of B12 folates and ferritin. If people have thyroid and celiac disease with other food intolerances this might reflect in the diagnosis of Hashimotos. Have chatted to several folk who have had the same range of tests but have additional intolerances to those of national health celiac tests. The gut as you know is connected to autoimmune disease.

No need to reply.

Angel20 profile image
Angel20 in reply to

All these tests I should get my GP to undertake 😊 the Endo will not do them or go private

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Your Ft4 and Ft3 are both extremely high

Ferritin very low. You need full iron panel test for anaemia

Have you tested thyroid antibodies?

Also need vitamin D, folate and B12 tested

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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 FT3 or antibodies Or vitamins

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

For thyroid including antibodies and vitamins

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...

Angel20 profile image
Angel20 in reply toSlowDragon

I am taking on board all the necessary testing to be done. After my ultrasound scan which in mid March I will do the bloods privately well before I see the Endo in April.

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

would strongly recommend you get FULL thyroid and vitamin testing NOW

Ft4 and Ft3 are very high....this could be causing damage

Improving low vitamin levels will significantly improve thyroid results

Ask GP to test folate, B12 and vitamin D plus full iron panel test for anaemia...or test privately

Trying strictly gluten free diet helps thousands of patients....

Your coeliac test was negative so you can try this straight away

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Angel20 profile image
Angel20 in reply toSlowDragon

I will get tests done sometime this week I will go private because it can take up to 2 weeks to see a doctor it’s quicker private

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Order the blood test kit ....it takes 2-3 days to arrive

Only do test on Monday, Tuesday Or Wednesday morning

Post off straight away...results emailed to you 2-3 days later

Come back with new post once you get results

Angel20 profile image
Angel20 in reply toSlowDragon

I made a note of all the tests you mentioned SlowDragon and will have them done privately its quicker. Thank you ever so much.

Marz profile image
Marz in reply toAngel20

Did you have the Private Testing suggested by SlowDragon ...

Angel20 profile image
Angel20 in reply toMarz

not yet I will schedule them soon too much going on with this virus

Angel20 profile image
Angel20 in reply toLivingWithHT

The thing is with me I do not feel unwell I am listening to my body. Maybe there is a swing from Hashimato's to Graves Disease and vice versa I don't know.

What is interesting is the blood test results have been the same for the past 3 years no change

LivingWithHT profile image
LivingWithHT in reply toAngel20

When you say your test results have not gone up or down in the last 3 years, do you mean they have not even changed by a single digit or decimal? If that’s the case then it’s very odd...maybe the lab is just giving you the same results every time? Because honestly, it may be scientifically impossible for results to stay exactly the same. Hormones are almost always shifting up or down slightly.

*Edit: just re-read that your latest results are from a private lab. So only the first few tests were done through NHS?

Angel20 profile image
Angel20 in reply toLivingWithHT

I only had one test done the first one under the NHS in January 2019 and January 2020 to which I have not had blood results until I see the endo in April. I know what the blood test results will be as the previous blood tests usually there is no significant change in my results. The Endo before discussing anything with me after the blood test results and ultra sound scan wanted me to start on Carbimazole 10mg I am not happy with that.

Wetsuiter profile image
Wetsuiter in reply toLivingWithHT

I thought that (rarely) it is possible to have both Graves and Hashimotos. Having said that, I do know that GG always comes along and asks which antibodies were tested and shown as positive, as misdiagnosis appears to be not unheard of

LivingWithHT profile image
LivingWithHT in reply toWetsuiter

You can’t actually have both but the amount of thyroid medication you’re on can make it seem like you have swung from one to the other. For example, if you have hypothyroidism and are over-medicated, your symptoms and results may reflect hyperthyroidism but it doesn’t mean you won’t go back to being hypo if you stop taking your meds. The same goes for hyperthyroidism.

Wetsuiter profile image
Wetsuiter in reply toLivingWithHT

well yes i do know that. And i know you cant be both under and over. Just thought I'd seen something about it somewhere...

Lora7again profile image
Lora7again in reply toWetsuiter

I have been both over and under. I think it has something to do with my multinodular goitre but at the moment I feel ok even though I am on no medication. My TSH is 0.38 and my T4 is at the top the range at 22 but my T3 is not that high. Someone has suggested I should not be feeling well because my T3 is not high enough but everyone is different and my T3 is high enough for me.

Wetsuiter profile image
Wetsuiter in reply toLora7again

I'm not explaining myself v well tonight am I? i wonder if I need some sleep 😂

LivingWithHT profile image
LivingWithHT in reply toWetsuiter

I understood what you meant and was just trying to clarify what I previously said :).

With all due respect, there are many other people on this forum who are also knowledgeable on the topic of thyroid diseases.

Wetsuiter profile image
Wetsuiter in reply toLivingWithHT

not sure what you mean

LivingWithHT profile image
LivingWithHT in reply toWetsuiter

“I thought that (rarely) it is possible to have both Graves and Hashimotos. Having said that, I do know that GG always comes along and asks which antibodies were tested and shown as positive, as misdiagnosis appears to be not unheard of”

You posted that comment in reply to mine so I tried to clarify what I meant...unless you meant it as a reply to Angel20.

And with all due respect to GG, there are many other people on this forum that are happy to be of help on the topic of thyroid disease, so if GG is not around to advise someone then surely others can and will.

Wetsuiter profile image
Wetsuiter in reply toLivingWithHT

as you are saying 'with all due respect', i feel i ve said something offensive somewhere to someone. Never my intention.

I'll leave this now

LivingWithHT profile image
LivingWithHT in reply toWetsuiter

Not offended, I’m actually confused because I don’t understand how the conversation even reached to you thinking I thought you were intending to be offensive.

I said “with all due respect” to be polite because I understand many prefer to wait for GG’s advice because they find it helpful and she’s basically a veteran here but I personally like taking good advice from anyone who can offer it on this forum and see no reason why others shouldn’t do the same. That’s literally all I meant, there was no underhanded message or backlash.

Lora7again profile image
Lora7again in reply toLivingWithHT

I understand exactly what you mean. Also there are a lot of ill people on this site and sometimes they are not feeling well and can get upset by certain remarks. I had someone be nasty to me on here and I then thought perhaps this person is not having a good day so I did not respond just deleted my reply because I did not mean to offend them.

Wetsuiter profile image
Wetsuiter in reply toLivingWithHT

that s good then. as i said elsewhere, i dont think ive said quite what I meant, which would ve been of no help to Angel 😁

Lora7again profile image
Lora7again in reply toWetsuiter

I think she probably knows what she is doing as it is her body. I myself listen to others on this site and I take their advice if I think it will help me. A few years ago I was told to go gluten free which I tried but it didn't help me lower my very high antibodies. Some people can live with high T4 and T3 and feel ok but I didn't feel ok when mine were very high. Like last year I was admitted to hospital with a thyroid storm I expected my TSH to be suppressed but it was 0.54 and "normal" according to the Consultant in A & E. I have been studying thyroid disease for about 10 years now and I have come to the conclusion that we are all different and sometimes when you think someone should feel ill because their levels don't seem right they feel well. If you understand what I mean ....

Angel20 profile image
Angel20 in reply toLora7again

It is exactly this, people are different, personally I had no idea I had GD and only went to the doctor because I had a very slight tremor in my hands especially the right hand no other symptoms to be worried about. I was told I have GD ok but wait a minute why I my not unwell, I have read on Graves Disease numerous of times, I read all your comments on GD in this forum and wonder why I do not feel unwell. This is why I am listening to my body, I also learn from other people's experiences and compare them to me I am lost right now need to get to the bottom of things.

LivingWithHT profile image
LivingWithHT in reply toAngel20

The symptoms of thyroid disease tend to creep up on a person with time. If I was more educated on the topic as a child, I would have known I had it since then but that was over 24 years ago, when there was even more ignorance on the topic. I didn’t realize how bad my condition was until I hit my late teens/early twenties, that’s when it was too obvious to ignore. Before then, I thought I was just one of those unlucky people that had a slow metabolism, easily retained water and struggled with losing and maintaining a healthy weight. Then my hair started falling out like crazy, and I started getting really bad indigestion, acid reflux, constipation, etc. I would also get very depressed from time to time, more so than the usual “having a bad day or week” depression.

I didn’t even know that people with hypothyroidism can accumulate so much water and mucin in the body until recently (from advice given on this forum), I really attributed my water weight and throat phlegm only to consuming too much sodium/not drinking enough water and my dust allergies.

You may feel okay now but it may get worse for you later. That’s actually why SlowDragon is insisting you do private blood tests for everything ASAP.

Angel20 profile image
Angel20 in reply toLivingWithHT

I will do the tests soon and then I can show you guys the lab test results for your feedback it should give me a clearer picture well before I see the Endo in April

Angel20 profile image
Angel20 in reply toAngel20

correction I see Endo 14 May not April just checked my diary.

LivingWithHT profile image
LivingWithHT in reply toAngel20

I hope it all works out for you :).

greygoose profile image
greygoose in reply toLivingWithHT

Ouch

SlowDragon profile image
SlowDragonAdministrator in reply toLivingWithHT

You can actually have both Hashimoto’s and Graves at same time, but it’s rare

Treatment then is block (with anti thyroid drugs) and replace (with levothyroxine)

LivingWithHT profile image
LivingWithHT in reply toSlowDragon

I used to think this, too, but then I read an article on thyroid diseases by Dr Lowe (inventor of Thyro-gold) and what he said in it made a lot of sense to me. While I don’t care for Thyro-gold itself - because it did not work for me - the information in his e-chapters and Q&A section helped me connect the dots and answer some of my own questions. What I understood from the information is that it can seem like you have both - when looking at test results and/or comparing symptoms - but, in the end, you only have one type, it can just fluctuate and manifest itself in different ways, depending on what other underlying issues there may be.

Especially in women, hormones are so easily shifted due to many internal or external factors. But, according to Dr Lowe (and other articles I have read about this), if one was to stop taking medication and just let everything fall back into place naturally, your thyroid will eventually go back to its original state - whether it was hypothyroidism, Hashimoto’s, hyperthyroidism or Graves’.

To me, this just makes sense as I have personally experienced it.

Angel20 profile image
Angel20 in reply toLivingWithHT

This is exactly what I have been doing because of the lack of testing from NHS doctors, they only concentrate on TSH, FT4 and FT3. I do not feel any worse by not taking anti thyroid tablets however I do want to know what I have then it will enable me to make a decision one way or the other.

greygoose profile image
greygoose in reply toWetsuiter

GG is here! lol

Angel20

Why do Endocrinologists rush into medication without evaluating the patient.

Because, strange as it may seem, the majority of endos know next to nothing about thyroid.

You can have both Grave's and Hashi's at the same time - or so it's said, but that's a complicated discussion because of the way Hashi's antibodies behave. But, the first step should always be to test the antibodies:

TRAB or TSI for Grave's.

TPO and Tg for Hashi's.

Both should be tested for. Diagnosis should then be made according to the levels.

If you do not test positive for TRAB or TSI, then you do not have Grave's. That's the clincher.

Hashi's is an autoimmune disease that swings from hypo to 'hyper' and back again, due to the dying cells of the gland dumping their stock of hormone into the blood during immune system attacks on the thyroid. But, that is not the same as Grave's, because the gland is not over-active as it is in Grave's. Therefore you do not need to take anti-thyroid drugs like carbi. The high levels will go down by themselves. Eventually.

Free T3 27.7 (3.1 - 6.8) [ pmol/L ]

Free T4 59.2 (12.0 - 22.0) [ pmol/L ]

Agreed your Free levels are high - higher than we normally see for a Hashi's 'hyper' swing - but are they high enough for Grave's?

What is interesting is the blood test results have been the same for the past 3 years no change

That is interesting. How many blood tests have you had during that time? And did they not test antibodies in any of them?

But, frankly, no point in speculating, you need those antibodies testing, and if your endo won't do them, I would suggest you get them done privately. A few more weeks without carbi won't make much difference, if it is Grave's, after three years. :)

SlowDragon profile image
SlowDragonAdministrator

We see many Hashimoto’s patients misdiagnosed as having Graves’ disease because antibodies aren’t tested

Endocrinologist should test all four thyroid antibodies

TSI and Trab for Graves

TPO and TG fir hashimoto’s and Graves

Similar post from yesterday

healthunlocked.com/thyroidu...

Angel20 profile image
Angel20 in reply toSlowDragon

You may not believe this, I had a job to persuade the Endo to do all the necessary blood tests, as he said the hospital may refuse to check for antibodies etc and will only test for TSH and FT4 this is why I do my own blood tests privately

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

So what were your antibodies results?

Angel20 profile image
Angel20 in reply toSlowDragon

Anti-Thyroglobulin Abs. 293 (0 - 60) [ U/ml ]

Anti-TPO Antibodies >1300 (0 - 60) [ U/ml ]

January 2019 blood test results private not NHS

what do they mean exactly

Marz profile image
Marz in reply toAngel20

Those anti-bodies are the ones that are tested for Hashimotos - so greygoose was right ! Ranges for both are the same - that is unusual. What did your Endo say when you showed him these results ?

Angel20 profile image
Angel20 in reply toMarz

I did not show them to him as he was doing his own blood testing but this time around when I have them done again I will take them with me.

greygoose profile image
greygoose in reply toAngel20

OK, so with those results, I don't think there's any question you have Hashi's. But, if it were me, I would want the Grave's antibodies tested, just to be sure. And, if they're negative, wave them under the nose of your endo!

But, the main point to take away from all this is that carbi is not the right treatment for you, and If it were me, I really wouldn't take it. :)

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Can you check the ranges on those ...

They do suggest most likely Hashimoto’s

But you can also have high TSI or Trab antibodies at same time

Have you had these tested? .

Angel20 profile image
Angel20 in reply toSlowDragon

I will have new tests done soon both for Graves and Hashimoto's it should be interesting to see where I am. Thank you for opening my eyes otherwise I would have not known anything about the blood test results and their meaning.

Lora7again profile image
Lora7again

I have had a couple of ultasounds the last one which was late last year showed that I had a multinodular goitre, I did put the results on the boards. The lady who did my last one was a Consultant and she told me my thyoid looked nothing like someone who was suffering from Hashimoto's so I had either hyperthyroid or Graves. My Endocrinologist who first treated me said I had Graves' Disease. I believe he did a blood test which confirmed it. Unfortunately I discharged myself from his clinic after he suggested I went for counseling when he overdosed me on PTU and I had a TSH of 9 so I can't ask him for my blood results to see if it was as he said. I know you said you feel ok but I did at first, I loved being slim and being able to get by on hardly any sleep I felt like super woman. This went on for months but I became very thin a size 8 and my hair thinned and I had palpitations and sweats. I then knew I had to take the drugs I do have the results on my GP's records and I think my TSH was 0.002 and my T4 was well above range and so was my T3. I will log into the records and tell you exactly what they were tomorrow. My family thought I was mentally ill because I was becoming paranoid about things and people. I even thought I was being stalked at one time which was actually true but they did not believe me. If I was you I would make sure you don't get any worse and have regular blood tests. I actually stopped my medication myself to see if I would go into remission and I did for 4 years. I had to do that because my Endocrinologist was not monitoring me properly and if I become hyper I will take PTU again but I will make sure I have regular blood tests. I know I am up in the night again but it is because I have picked up my husband's cold so I have had to take some paracetamol just incase you wonder why I am posting at this time.

Angel20 profile image
Angel20 in reply toLora7again

the ultrasound scan I had in January 2019 requested by my GP specifically stated suspected Hashimoto's Disease and should be investigated further, it also stated I had enlarged nodules. But instead of the Endo taking this further to look into it, another year passed till I was seen by a new Endocrinologist who was also reluctant to undertake another ultrasound test for me and he requested it only when I said I was not happy to continue with him unless another ultrasound scan is done. My appointment is March 2020 and cannot wait to see what the results will be as this will provide valuable analysis as to what is going on with me.

Angel20 profile image
Angel20

Anti-Thyroglobulin Abs. 293 (0 - 60) [ U/ml ]

Anti-TPO Antibodies >1300 (0 - 60) [ U/ml ]

The results are from 2019

They do indicate Graves Disease however I do not feel unwell.

Marz profile image
Marz in reply toAngel20

They indicate Hashimotos ...

greygoose profile image
greygoose in reply toAngel20

No, they do not indicate Grave's. They are very much Hashi's. You might have slightly elevated TPO/TgAB with Grave's, but those are massively high. They're Hashi's.

For Grave's, you need TRAB or TSI tested.

Angel20 profile image
Angel20 in reply togreygoose

OK, does it mean I have Hashimoto's ?

Angel20 profile image
Angel20 in reply toAngel20

I will find the original test results from NHS will look for them it may include other tests and post them

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

You can have both Hashimoto’s and Graves at same time but it’s rare

Marz profile image
Marz in reply toAngel20

Yes - I mentioned it in a Reply above !

greygoose profile image
greygoose in reply toAngel20

Yes.

Angel20 profile image
Angel20 in reply togreygoose

I have checked the test results dated January 2019 and unfortunately they did not check for TSI or TRAB they did test for TSH receptor antibody 13.5 (raised)

The first Endo wrote ' She is amazingly symptom free' suggested Carbimazole treatment low dose to lower the antibodies as well as reduce her thyroid synthesis.'

The ultrasound scan report January 2019 via GP

Findings

The thyroid gland is normal in size, diffusely heterogeneous in echotexture and increased in vascularity. Appearances are suggestive of Hashimotos thyroiditis. Multiple nodules seen. The most notable is at the lower pole of the right lobe. It measures

6 x 6 x 6mm and contains a calcified rim (U3). Not retrosternal extension seen.

Normal appearances of the submandibular glands

Appearances of the thyroid are suggestive of Hashimotos thyroiditis

Multiple nodular thyroid. The most notable is within the right lobe and has a U3 (indeterminate) classification

Specialist referral is recommended for further evaluation

When the first Endo was shown this report he said I will do my own ultrasound scan but instead he prescribed medication he did not do any further investigations and for this reason to this day I have not taken any anti thyroid medication.

Your thoughts appreciated

Marz profile image
Marz in reply toAngel20

Shocking treatment - which sadly we see far too much of here on the Forum. I would follow the advice given here and see how you feel.

Angel20 profile image
Angel20 in reply toMarz

I trust this forum, thank you. Tomorrow I am having the ultrasound scan and take it from there.

Marz profile image
Marz in reply toAngel20

Hope all goes well. The one you had a year ago was pretty conclusive !

Angel20 profile image
Angel20 in reply toMarz

yes it was conclusive and yet it was ignored. I am finding it very difficult to trust the Endos

Marz profile image
Marz in reply toAngel20

We have to be our own health advocates. You have kept good records so should be well prepared for your next appointment ... Sadly most Endos specialise in Diabetes not realising that sometimes it is caused by an undertreated or undiagnosed thyroid. Maybe the Thyroid is just too difficult for them :-)

Angel20 profile image
Angel20 in reply toMarz

ha ha spot on. I do not take their word as gospel I go by how I feel. Right now I feel well.

greygoose profile image
greygoose in reply toAngel20

I have checked the test results dated January 2019 and unfortunately they did not check for TSI or TRAB they did test for TSH receptor antibody 13.5 (raised)

TSH Receptor Antibodies is TRAB. So that was positive? So, looks pretty much like you do have both Hashi's and Grave's. :)

Be interesting to know what the scan shows tomorrow.

Angel20 profile image
Angel20 in reply togreygoose

Thank you

I will find out when I get the scan results it will be in April

greygoose profile image
greygoose in reply toAngel20

OK, keep us up-dated. :)

Angel20 profile image
Angel20 in reply togreygoose

I will with everyone’ Help I can understand it much better

Thank you

greygoose profile image
greygoose in reply toAngel20

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

So high TSH receptor antibodies is Trab test

This confirms Graves

gloshospitals.nhs.uk/our-se...

So it appears you do have Hashimoto’s AND Graves

This is more complex....you likely need block and replace

Block with carbimazole and replace with levothyroxine....once Ft4 and Ft3 start to drop

Still recommend getting vitamins tested and trying strictly gluten free diet too

Only make one change at a time

greygoose

greygoose profile image
greygoose in reply toSlowDragon

Yes, I saw that. :)

Angel20 profile image
Angel20 in reply toSlowDragon

The first Endo only said it was Graves disease, he did say however, that I may turn hypo and then after that it will resolve itself. This is why I wanted them to undertake further testing, he never mentioned Hashimoto's to me.

Interesting when I was in Greece in 2017 summer time I had all the tests done and paid for them. The outcome I was told I had Thyroiditis.

So the Greek lab tests are far more closer than the UK ones. This so baffling to say the least.

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

You actually have both running in tandem

Trab antibodies are causing Graves’ disease

TPO and TG antibodies hashimoto’s

Greek tests picked up the Hashimoto’s

Marz also found Greek health care system very good

Angel20 profile image
Angel20 in reply toSlowDragon

I am wondering will the ultrasound scan pick up whether it is Hashimoto's or Graves Disease ? because I know for a fact the second Endo will only test the minimum standard TSH FT4 and maybe not even FT3 and possibly he will test for antibodies too.

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Ultrasound wouldn’t pick up a Graves

It generally picks up hashimoto’s, or can pick up hot nodules (a hot nodule makes Thyroid hormones regardless of TSH)

Angel20 profile image
Angel20 in reply toSlowDragon

It should be interesting to say the least because the first ultrasound scan suggests Hashimoto’s 😊

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Hopefully you can get dialogue going with person doing the ultrasound scan....and find out more tomorrow

Angel20 profile image
Angel20 in reply toSlowDragon

If the Endo does not pick it up I need to address it with him.

Angel20 profile image
Angel20 in reply toAngel20

I am now wondering if the lab got it wrong this is why it is so important I have tests done again.

You have seen endocrine specialist and that is a miracle itself. I have been to ENT specialists and have had thyrotoxicosis twice. My eyes were prominent, but was wrongly diagnosed by hospital. I had heart palpitations and acute anxiety and had lost weight.

It was a miserable experience. I went privately to a an ENT specialist but though I had

a goitre which was increasing in size, it was not blocking airways and I could swallow.

Years later decided to have a scan, after seeing the doctor. I had to see a specialist ENT

who looked a little eager to remove it. The ultrasound proved I had eight nodes at least

which were enlarged. I recognised from my own research and from TSH levels, it was a diffuse goitre, which was subclinical normal. The reason why thyrotoxicosis should be treated is because it can affect your heart. I also found out that gluten in foods in most grains is related to an autoimmune response. When your eyes become prominent it may

be a sign of autoimmune disease that may be related to graves disease and Hashimotos.

Looking back at Graves disease, with heart palpitations weakness, and restless energy

I would check for food intolerances. I went to a pharmacy chain in the Uk which detected

not gluten intolerance but a host of grains, egg and dairy. This cannot be described as celiac disease as multigrain allergy is not recognised in the UK but gluten intolerance and thyrotoxicosis, and Hashimotos are all linked. This may not cure the thyrotoxicosis but it may prevent damage to your thyroid. Damage to your thyroid may increased by aluminium used in saucepans kettles and even wrapping food. Fluoride in too high levels in toothpaste may also affect your thyroid. When you clean your tooth there may be a residue that remains even when you wash out the toothpaste. Fluoride levels may be higher in certain teas, such as black teas. The administrators will no doubt give you advice on

vitamins and minerals which support your thyroid. They will be able to advise you from your test results concerning your Hashimotos. The drug used for thyrotoxicosis does have side Yellowcard mrha gov Uk system gives profile analysis of side effects

of Carbimazole ."

There is an interesting post - HypErthyroidism - what are the alternatives to Carbimazole RAI and surgery. "The person has cut out gluten tea and coffee and eats no soy as it can raise heart rate. she had to give up badminton. She takes 1500mg of L carnitine supplement as an Italian study suggests it can reduce hyperthyroidism. she takes Nat mur homeopathic remedy.

However a thyroid storm is serious and this is why your endo is worried about it

and it could affect your heart. Omitting alcohol, drinking green than black tea and cutting out smoked foods such as smoked salmon cheese and other fish as well as smoking, may help thyroid too. Smoked food is the same as smoking as are teas and coffees with tannins with roasted beans and leaves. Green tea does not use roasted leaves. I hope you get the results

for your thyroid analysed by the website administrators . This is your health and if you think

you can manage it by control of diet and lifestyle, you might try for a couple of months but

the thyroid gland can be overreactive from genetic reasons so you must take care.

Angel20 profile image
Angel20 in reply to

I do not have celiac was tested negative. I can eat and swallow easy no problem there. L-carnitine I have been taking for the past 2 years and it helps.

Eating healthy it is a top priority for me. Red meat I dislike and may have a couple of pieces once in a while.

My eyes are ok.

From 2019 to date I have researched information on Graves Disease

The thing is the ultrasound scan suggested Hashimoto's this is why I will be having another ultrasound scan tomorrow 3 March at the hospital, need to get to the bottom of this.

Prescribing tablets its a big NO for me until I know exactly what I have and what is the cause.

SlowDragon profile image
SlowDragonAdministrator

You can test just vitamin D here

vitamindtest.org.uk

But would recommend you also get B12, folate and TSI or Trab tested via Medichecks or other private blood test service

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Angel20 profile image
Angel20 in reply toSlowDragon

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Also ferritin is often high with Graves’ disease

So the fact your ferritin is low also suggests hashimoto’s rather than Graves’ disease

verywellhealth.com/fixing-l...

The serum ferritin test measures the amount of iron storage in the body. The normal range in men is 40 to 300 nanograms per milliliter (ng/mL) and 20 to 200 ng/mL in women. Unlike other lab tests, you do not need to fast prior to the blood draw.5

If results are below the reference range, iron deficiency can be definitively diagnosed. If the results are high, it can help cement a diagnosis for hyperthyroidism.

While hyperthyroidism can sometimes interfere with iron metabolism, manifested by increased ferritin levels, this issue resolves when the hyperthyroidism is adequately treated and does not require any additional evaluation or treatment.

Angel20 profile image
Angel20

Tomorrow 3 March I am having another ultrasound scan at the hospital the thing is I will probably not know the results until I see the Endo in April 2020. The Endo is under the impression that I have started taking Carbimazole 10mg as he got in touch with my GP whilst I was away in Cyprus on holiday. I have not picked up the prescription until I know the results of the scan.

Angel20 profile image
Angel20

Thank you for that 😊

SlowDragon profile image
SlowDragonAdministrator in reply toAngel20

Here’s a picture

en.wikipedia.org/wiki/Hashi...

Angel20 profile image
Angel20 in reply toSlowDragon

Wow - I only had the report no pictures were provided to me - thank you

Ultra sound tests are not invasive and comfortable but sometimes a biopsy is taken of nodules.. I had a friend who went privately and had a node removed and it improved her health. Nodes have to be a certain size before they are taken out. This is

the difficulty with delay in retests, as sometimes the nodes can grow quickly. hope your

tests come up ok. Im pleased you had celiac tests but these only cover several foods in the uk. Ceramides in maize and rice are sticky substances in these grains which are not recognised as intolerances. I had a test for a range of 69 foods and different food groups which highlighted a range of foods I never knew were affecting me. The test only came in about two years ago and is linked through the NHS. This has been my problem there is no wide range test for foods for celiac disease, and so other foods and groups may be upsetting your gut. It can be symptomless for years> Hope you get the information you need, as would be troubled if anything was seriously wrong and was ignored.

Angel20 profile image
Angel20

Thank you. Tomorrow is the day if they tell me anything there and then will post the findings

As for starches rice maze etc is very limited in. Y diet 😊 also my cholesterol is low

SlowDragon profile image
SlowDragonAdministrator

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

Strictly gluten free diet helps thousands of patients who have hashimoto’s or Graves

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Angel20 profile image
Angel20

I had to cancel the ultrasound scan as I had an emergency at home a member of family was very unwell had to go to A &E

The hospital will make another appointment

Good news is I can go ahead and have blood tests done 😊

Angel20 profile image
Angel20 in reply toAngel20

The emergency was my husband its sods law the day I had the ultrasound scan he became very unwell, he comes first hopefully he will come out of hospital tomorrow.

Angel20 profile image
Angel20

ok I have another appointment 25 March for an ultrasound scan

Angel20 profile image
Angel20

Appointments have been cancelled the ultrasound scan and the follow up with the Endo in April due to coronavirus the hospital will review again in 3 months time.

The Endo prescribed carbimazole 10mg before I was due to have an ultrasound scan for my thyroid, I was not pleased with his way of thinking, however, I collected the carbimazole from the chemist.

10mg I was not prepared to take because I was not in need of them to be so high.

As from yesterday I decided to take carbimazole my way.

The tablets come in 5mg so what I do is this. Cut the 5mg in half to give me 2.5mg carbimazole and then cut again the 2.5mg carbimazole in half again 1.25 mg of carbimazole then cut the 1.25mg again so basically I am taking 0.625 mg in the morning and 0.625 mg in the evening total of 1.25mg carbimazole per day.

Unconventional yes it is, but I need to start at the lower end see how this may work.

I will have private blood tests

I have not given up on my vitamins, I take these too - I am experimenting with carbimazole, because I know me, I know my body.

Your comments welcome

Marz profile image
Marz in reply toAngel20

I would start a new post with the above as it won't be seen by many - 😥

Angel20 profile image
Angel20 in reply toMarz

Ok 😅

Not what you're looking for?

You may also like...

A new Endo with attitude

Many of you know my story of Graves Disease\\hyperthyroidism. I have had Graves Disease approaching...
Angel20 profile image

Ultrasound Thyroid Scan

I had a scan a couple of weeks ago and not had the official results from my GP yet. However, the...
bestbuddy profile image

Thyroid Uptake Scan

In Feb 2023 I asked my GP for help as I’d noticed my weight was dropping, had temperature...

Ultrasound scan results

Hi everyone ❤️ As some on here may know I had full thyroidectomy in May 2019 struggled with thyroid...
birkie profile image

Latest blood results, advice appreciated

Hello everyone, I have Graves and Thyroid Eye Disease and have just arrived home from outpatients...

Moderation team

See all
Jaydee1507 profile image
Jaydee1507Administrator
PurpleNails profile image
PurpleNailsAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.