Update on treatment : I'd like to start by... - Thyroid UK

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Update on treatment

Sweetpea1157 profile image

I'd like to start by wishing everyone a happy new year, all be it a bit late

Right , update, well its been mainly a total joke , am no further forward with all that is going on with me , still not getting any answers , but , am waiting for appointment with endocrinologist

Got some good news that the lumps in my neck and the swelling are not sinister, but at the same time , was not given any explanation or reason as to why this is happening, and was told yesterday by a gp that I was just being over anxious as i asked if the problems could be anything to do with my graves disease, because , apart from the neck swelling and lumps on left side of neck , the fact my hair is breaking of in clumps again , the joint swellings and inflammation especially in knees and feet , also eyes playing up a lot more , are very dry and bloodshot and very sore . Every time I mention 'graves' it seems to be totally avoided and disregarded .

Anyone got any ideas ???

Yes , I am going to see an endo , but that was only after a fight with gp and a very reluctant referral

21 Replies

Why are you talking about Grave's disease? I thought you were hypo?

Sorry for delay getting back to you , I am hypo , but was hyper to begin with , thats what caused the graves still not 100% sure what type of graves , but pretty sure it's hashimotos. Docs keep avoiding the subject , and as only joined the forum last year , am still on a huge learning curve

Grave's and Hashi's are two different diseases, and one does not cause the other. If you have Hashi's and your FT4/3 levels suddenly go high, it is not because you have developed Grave's, but because you are having a Hashi's flare. It is not true hyperthyroidism. It is just the dying cells, after an immune system attack, dumping their store of hormone into the blood. It is not the thyroid over-producing hormone, as it is in Grave's.

Doctors know little about Grave's, and nothing at all about Hashi's, so that is probably why they are avoiding your questions. But, to know if you have Hashi's and/or Grave's, you need antibodies tested:

TRAB or TSI for Grave's

TPOab and TgAB for Hashi's

So, do you have a copy of your latest blood test results? If so, post them here. What are you taking at the moment, and how much? :)

Posted last lot of test results to you a wee while back now , docs have confirmed that I do have graves and am taking levothyroxine 75mcg then 100mcg every other day

I am a little confused at moment greygoose as i thought we had already gone through these because you were actually advising me on the way forward , which I have been following ie the k2 and B12

I'm sorry, I have a very short memory. I will look it up when I have a minute. But, how did they confirm you have Grave's? Did they test the TRAB or TSI? Because what I remember is you saying you had Hashi's. So, I'm sure any advice I gave you was based on that.

greygoose profile image
greygoose in reply to greygoose

OK, so I'm just going through your old posts.

We talked in this one:


But, there was not mention of Grave's. You were on levo, and hypo, with a very low FT3.

Here, we talk about Grave's:


when you said: hashimotos is a form of graves disease. And I told you it wasn't. But, you never told me which antibodies you've had tested.

In this thread, you say you have Hashi's and Grave's:


But, you didn't answer when Susie asked about antibodies.

In this one:


you say you were originally diagnosed with Grave's, but then the diagnosis was changed to Hashi's. But still no information on the antibodies. So, I'm really, really confused, now.

Doctors cannot diagnose you with Grave's without testing antibodies. If you don't have the Grave's antibodies, you don't have Grave's. And, Grave's and Hashi's are in no way the same thing.

In any case, you've had RAI, so now you are hypo, and any advice I gave you was based on the fact that you were/are hypo. There is no treatment for Hashi's. And, in any case, the Hashi's goes when you lose the thyroid. Grave's antibodies will continue to be in the system even when the thyroid is gone. But, if you have no thyroid, you cannot ever be hyper again. So, from now on, you need to just concentrate on your need for exogenous thyroid hormone.

It sounds to me as if you are under-medicated. And, 75/100 mcg levo is not likely to be an adequate dose for someone without a thyroid. However, I cannot find any results for you except those in the first link I posted above:

TSH - 0.21 (0.35 - 5.00 mu/l)

FT4 - 16.4 (9.0 - 21.0 pmol/l)

FT3 - 3.4 (3.0 - 6.0 pmol/like)

And that was three months ago. Have you not had a test or an increase in dose since then? As I said, your FT4 is only mid-range, and most people need it higher than that. And your FT3 is right at the bottom of the range, which is far too low, and - even though you are under-medicated on levo - it does suggest a problem with conversion, for which the solution is to add T3 to your levo.

Without raising your FT3, you are going to continue to be unwell. And, there's nothing else you can do about it. An increase in levo might help a little, but levo alone will probably never give you enough T3 to make you well. I'm not sure what else there is to say. :(

Sorry taken so long to get back to you again

Have not had any more tests since the last , am waiting to see an endocrinologist and am hoping he/she will run all the respective tests . Did ask doc for T3 but he said id have to wait till I've seen the endocrinologist, but that doesn't mean that I am going to get it , so will probably have to buy online

As for the graves , i can only relay to you what the docs are telling me , which at the end of the day is very little and am still totally confused with the whole thing. I'm learning a lot more since being on here and totally appreciate all the advice that everyone is taking the time to give me

Thanks once again greygoose will update as soon as I can

Well, I think you ought to get copies of all your medical records - or at least back to the diagnosis, so that you thoroughly understand what's going on. Failing that, you should at least ask your doctors to look for you and see if the TRAB or TSI Grave's antibodies were tested. I do think it's rather important you know these things. :)

Ok will ask docs for a complete copy of all my files , to try and see what I can find out , then will get back to you , that's when I manage to get an appointment, and if they don't take forever to give me what I have requested

Thanks once again greygoose

Oh ps , i got the K2 delivered today , will it still be ok to start taking that ??

Yes, you can start that straight away.

You don't have to wait until your next appointment for your records. Just go and see the receptionist and be nice to her. :)

Thanks greygoose will try that

Also , did you read the question about the B12 that I asked yesterday , which one do you think would be the best for me to take and will it help with my present situation until I can get things sorted with endo

Sorry for being a neusance

No, I can't find a question about B12. The best brands are Solgar and Jarrows - sublingual methylcobalamin. But, how much depends on what your level was.

How well it makes your feel depends on how bad the deficiency was making you feel. It only makes you feel better if you need it. More is not better. But, it can't replace thyroid hormone, so if your lack of T3 was causing your symptoms, taking B12 will not get rid of them.

Thanks Greygoose will take that on board, I've got so much to learn as i dont know eny thing, but reading posts on the forum has been an eye opener for me. Have a nice evening ☺

Thank you. You, too. :)

Hello Sweetpea1157

I remember replying to you a couple of months ago.

Did you manage to read any of Elaine Moores book Graves Disease A Practical Guide -

this lady has the disease and went through RAI. There is also her website ( USA ) -

I was diagnosed in 2003 with Graves and drank Rai in 2005 and told I was better from the Graves, but that I might become hypothyroid.

I now have Graves Disease, thyroid eye disease and hypothyroidism.

I have been very unwell the past 5 years and have received no Nhs care or support.

Graves is poorly understood, it's a autoimmune disease and as such it is for life.

If you have been managed on only a TSH blood test result - it's the wrong test for Graves.

We have TSI antibodies controlling our TSH giving false read.

Rai treatment also results in your feedback loop being broken, so the conventional testing of the TSH without the T3 and T4 is again not a valid indication of your thyroid - less status.

A fully functioning thyroid, in a so called, healthy person would produce approximately :-

100 T4 + 10 T3 daily - if you haven't a thyroid I would think that you would need this daily dose to replace what you have lost through having your thyroid ablated.

I was having to pay for all my blood tests, including the vitamins and minerals and the results were not accepted by my doctor anyway.

I am now doing it for myself, with the help of excellent sites like this one.

I wouldn't have chosen to go this way but have and today I'm now doing OK.

I've a way to go, but I am moving forward.

I am supplementing the Vits and Mins and have switched to NDT.

I flirted with T3 but natural desicated thyroid suits me better, and realistically, it is more like for like than the synthetics.

I have drunk a toxic cocktail so many years ago, and who only knows the long term implications of this 1-131 treatment. It doesn't solve the autoimmune disease, merely burning out a perfectly good, healthy major gland that was going haywire because it was under an attack from your antibodies.

Rai is considered " barbaric " in many countries and not a treatment for Graves Disease.

Apart from the book above, you might find these also invaluable :-

Barbara S Lougheed From Hyper to Hypo to Healing - another lady who has Graves and went through Rai ( USA ) debunks the TSH blood test reading for Graves people -

Your Thyroid and How to Keep it Healthy by Dr Barry Durrant Peatfield - a UK doctor who has hypothyroidism - we might not now have a working thyroid but we need all the knowledge in order to put back all that we have lost through a medical invention.

Professor Toft - Thyroid Hormone Replacement - A Counterblast to Guidelines -

published December 2017 Journal of the Royal College of Physicians in Edinburgh -

( available on this website ) -

Read all you can, then read it all again, it will sink in, and you will start to understand and become your own advocate - it seems to be the only way - take good care :

Thankyou pennyAnnie for getting back to me , I will take all you have suggested on board and will look into obtaining the books you have recommended, we did try to get some books before from the library , but they had ALL gone missing

Coincidence? ? After the way I've been treated as of late , im begining to wonder if they had been deliberately removed . Saying that , i will invest in the books you have recommended as i find this forum so helpful , but there is still a lot I don't understand

Thankyou once again for getting back to me you have been so helpful once again

You also take good care , thank you

Yes, my Elaine Moore book, came through Amazon, but from a thrift shop in the States

and I think the postage cost more than the book. It has now been reprinted so hopefully not as elusive as 5 years ago when I started my learning curve. There is a very comprehensive website if this option suits you better.

It's a long haul, but if I can do it, being dyslexic and brain fogged at the time, I'm sure given time, you'll get stronger and more confidant in finding your own way forward to better health.

Thank you, I'm getting better than I have been in years.

P.S. I think these books are more goto bibles - you'll need to and refer to them longer than the time allowed on your library stamp - do they still do that ?

Maybe that is why they have all gone - the last person who took them all out was me !!

No, seriously, invest some money, they'll become dogeared and marked and highlighted by you as you read through making them your own best friend.

Thanks pennyannie, am definitely going to invest in the books you have recommended, and I hope eventually , with my partners help , I will start to understand everything

Sorry not getting back too quickly but i have to wait for partner to come down to help me here as my eyes are in very bad shape at the moment

lolajone profile image
lolajone in reply to pennyannie

Can you please explain or do you have a reference re TSI antibodies controlling TSH and giving a false reading interested because I had graves and then years later have hashis. I thought TRAB were the antibodies for graves ?

pennyannie profile image
pennyannie in reply to lolajone

Hey there Lolajone - ok, as I understand it.

There is also a Thyroid Stimulating Immunoglobin and this antibody is responsible for hyperthyroidism in Graves Disease. This TSI stimulates and controls the TSH receptors. This therefore is yet another reason, but unique to Graves patients - monitoring patients on a TSH alone is not appropriate.

It is essential that T3 and T4 bloods are always tested as these two hormones need to be adjusted, titrated, to a ratio that offers the patient a level of wellbeing.

I read of ratios between 1 / 3 to 1 / 5 - T3 to T4 - to achieve this on monotherapy with T4 is difficult for Graves patients as we " appear suppressed " on a much lower dose of T4 than other patients, so never really get started on finding an acceptable dose level -

in my experience I was kept on 100 T4 otherwise I " appeared suppressed " - and my dose of T4 reduced -

I was never well, just soldiered on, putting excess strain on my adrenals -

An example of this would be looking at the fuel gauge on a car dashboard.

The tank looks full - but you know the tank is empty - and marker on the dashboard is broken - you're running on empty - another one ? - think of a water heater, the water isn't heating up, or it heats up and doesn't cut off - you need to manually turn it on and off - the switch is faulty - the light might come on but it's not working -

I don't think the Nhs pay much attention to antibodies and autoimmune conditions - they haven't a guideline or script to recite from.

I hope that helps a bit,

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