Graves’ disease

[Hopey62]

Hi I am 58 years old and was diagnosed 5 years ago. I took methimazole and got severe allergic reaction. My liver levels are high so my doctor has no other medications for me. She insists I get radioactive iodine to kill it. I am refusing and struggling. I have no symptoms. Once again in awhile I get heart palpitations. I am seeing a holistic doctor and taking vitamins. Also I have been gluten free and eating healthy. Does anyone know how long it takes to see results? It’s been 7 months taking vitamins and two months completely no gluten! Thank you and this is my first time on this web sight

[PurpleNails Administrator]

Hello and welcome.

Do you have or able to obtain recent blood test results? TSH, FT4 & FT3.

In UK we are offered carbimazole then Propylthiouracil if carbimazole unsuitable assume you are not in uk?

Your Graves may have gone into remission. Was your Graves diagnosis confirmed with high antibodies? TSI or Trab.

Do you know what your holistic practitioner is giving you as treatment?

Were vitamins tested and found to be deficient as otherwise additional supplementation can be very unhelpful (in some vitamins, eg iodine, iron, calcium)

Important to test folate, ferritin, vitamin D and B12.

Gluten free can be really beneficial.

[ling]

Yes, any blood test results to share?

How are u struggling when u do not have symptoms?

If liver levels are high on methimazole, then PTU may not be suitable as well.

[Hopey62 in reply to ling]

Hi ling. Well I’m struggling because of my levels . And also this is my second opinion doctor and they both say the same thing to the radio active iodine and I just feel like they don’t care and I don’t feel like I wanna go to a third doctor I will continue with the holistic doctor even though it cost so much money I am going to send you a picture of my blood results I hope you can make it out

[ling in reply to Hopey62]

Please insert your results in the first post. Or put up a new post.

Could u share how u are struggling?

I'm inclined to think if the holistic treatment is not working and u have been off methimazole for some time, then it shows the Graves is still raging.

Btw, how was your Graves diagnosed? Was Graves antibodies tested?

Do u have a goitre?

The two doctors, in your case, suggested RAI with reason. If u already had high liver levels from methimazole, then the only other available alternative, PTU, will not be offered to u as PTU is known to cause even greater liver injury than methimazole.

Leaving the Graves untreated is not a good idea, as it has other implications on your overall health.

[Hopey62 in reply to ling]

Good morning. I was diagnosed in January 2016 I was having heart palpitations my doctor took blood and that’s when my nightmare began!my struggle is everyday knowing that my levels are not getting better. Im trying so hard to take care of myself and it’s not working . That’s why I’m hoping with getting to hear other people’s story I can get more useful information. I feel that even though my blood is not good I’m feeling great physically and do not not radiation or removal of my thyroid. Thank for ling

[ling in reply to Hopey62]

Results?

[Lora7again]

Have a look at Elaine Moore's site it is full of useful information and she is a Graves' disease sufferer.

elaine-moore.com/

[Hopey62 in reply to Lora7again]

Hi lora7again. Thanks to you I bought the book I and it comes soon

[pennyannie]

Hello Hopey and welcome to the forum :

OK there are other anti thyroid drugs - Carbimazole - and Propylthiouracil - PTU for short - are these off the table too ?

I have Graves and had RAI thyroid ablation in 2005 and deeply regret this treatment option.

If I could have my time over again, I would stay on the AT drug, as I didn't have any problems and was well, and continued to work. I was only ever on AT drugs though for 15 months as I was told at my very first hospital appointment that I was to have RAI the following year and I didn't know enough to question or say anything and simply trusted the medical system.

I read of many people not drinking the toxic substance RAI to burn out their thyroid in situ nor having a surgical intervention and having their throats slit open, but staying on low dose AT medication long term, and, or, switching to holistic, alternative options, and being well.

It's difficult as you can feel like you are between a rock and a hard place.

But we are actually looking at an autoimmune disease which is a whole body issue with your immune system attacking you, and when the thyroid comes under attack with Graves, the symptoms are said to be life threatening.

My symptoms were mild, to what I read on here, but since the " treatment " I'm definitely more incapacitated.

If you don't know of the Elaine Moore Graves Disease Foundation website suggest you might like to dip in :

Elaine has Graves and went through RAI back in at the end of the 1990's and finding no help with her continued ill health, and being a medical professional started researching this poorly understood and badly treated auto immune disease herself.

There are now several books, and open forum much like this amazing platform and full details on alternative, more holistic treatment options and research into Graves and suggestions on what you can do to help yourself.

The medical profession work to guidelines and yes, we should question the guidelines :

Professor Toft the eminent endocrinologist - look up his career profile - said everything in a 2017 article entitled - Thyroid Hormone Replacement - a Counterblast to Guidelines - and it is on this website, in full somewhere, and from within the 3 pages - I quote:

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 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism.

I don't know that you can put a time line on this as to how long will it take you :

We are all different and coming at this with only our own health issues :

Whilst the UK NHS routinely only medicate with T4 Levothyroxine many of us have been forced to search, and medicate ourselves with the other thyroid hormones options that are widely available throughout other areas of the World,

It's not ideal and when dealing with symptoms of hypothyroidism through RAI thyroid ablation for Graves - the situation is simply further compounded.

I have been very unwell and referred to as a conundrum :

I have been refused Natural Desiccated Thyroid and T3 thyroid hormone replacement :

Levothyroxine is now the only treatment option open to most people in the UK post thyroid removal/ablation, and other than T4 you are given anti depressants as a consolation prize, though other countries throughout the World offer other treatment options if T4 doesn't work well for you.

I now manage lingering Graves, thyroid eye disease caused by the RA.I and hypothyroidism and I self source and DI for myself taking Natural Desiccated Thyroid which contains all the same known thyroid hormones as that of the human gland. NDT was used successfully to treat hypothyroidism for over 100 years and has been " phased out " as Big Pharma rolled in with T4 - Levothyroxine and the " science of treatment via a computer " :

NDT is pig thyroid dried and ground down into tablets referred to as grains and contains trace elements of T1. T2 and calcitonin plus of measure of T3 at around 9 mcg. and a measure of T4 at around 38 mcg.

I have also read of Graves Disease burning itself out : given time :

[Lora7again in reply to pennyannie]

I don't know if Graves' does burn itself out .... well in my case I am now on my second remission and I feel well. I think I have had it for about 12 years now because I was undiagnosed for over 2 years. Thinking back I might have had it a lot longer because after I gave birth to my 2 childrens over 30 years ago I was back to my original weight in a couple of weeks! I seemed to have boundless energy and everyone was amazed how I was getting by on hardly any sleep! I knew nothing about Graves' or thyroid disease but my mother hardly slept as well and she actually had a lump on her thyroid which was removed and was found to be benign and she had no further treatment. If my thyroid does ever burn itself out I will definitely tell other members but at the moment I feel well except for probably having covid so I am just waiting to find out which will be today hopefully.😀

[humanbean]

Do you have copies of any of your thyroid function test results from before you started treatment and onwards? It would be to your advantage to know your own blood test history, and what the results and reference ranges were. As far as your thyroid is concerned, the results that are informative for us are :

TSH

Free T4

Free T3

TPOAb

TgAb

TRAb (and/or TSI)

If your doctor is treating you solely on the basis of your TSH then it might turn out you have other problems that are being ignored, and it would be a good idea to know.

People with thyroid disease tend to have low nutrient levels, so it would be good to know the results of any test of the following :

Vitamin D

Vitamin B12

Folate

Ferritin (Iron stores)

(and it would be helpul if you've had results for serum iron and transferrin saturation % as well)

Once again in awhile I get heart palpitations.

I just wanted to point out that low levels of various nutrients have palpitations as a symptom, it might be unrelated to your thyroid. Low iron and/or ferritin is one. Low levels of vitamin B12 and/or folate can cause heart issues as well.

Carbimazole has been mentioned as a possible alternative to methimazole. I don't think this would do you any good because carbimazole is converted in the body to methimazole. It's odd - in the UK carbimazole is the standard treatment, and in the US methimazole is the standard treatment for hyperthyroidism. And another thing I've read is that carbimazole is used sometimes for hyperthyroidism in the US, but only on animals. I have no idea why these differences in treatment protocols arise.

PTU, however, is a commonly used alternative to carbimazole in the UK. Doctors prefer the carbi, but will switch if they have no choice.

drugs.com/mtm/propylthioura...

...

If you get some blood test results to share, you should probably write a new post to share your results, and ask for feedback.

After five years, it is very unlikely that your Graves' is a misdiagnosis. But it can happen. We've had a small number of people come to the forum who've been told they are hyperthyroid, but it turns out there is no evidence of that, and instead they have possible Central Hypothyroidism, or Primary Hyothyroidism caused by Hashimoto's Thyroiditis. And both these conditions can present with very low TSH.

The treatment for these various forms of thyroid disease are usually quite different from each other. But unless you can be confident of your diagnosis the last thing you should consider is either killing off your thyroid with RAI or having it removed.

[PurpleNails Administrator]

You have extremely high TPOab and TgAb which is suggests hashimotos. In which case your FT4 would ultimately trend downward to hypo. They can also be elevated with Graves’ usually weakly elevated. Or you could even have both autoimmune conditions. You must arrange for TSI or TraB to confirm your Graves diagnosis. You must also have your FT3 monitored too. FT3 is the active hormone.

Also, recommend you crop the top of the image you attached, as it has your private identity.

[Hopey62 in reply to PurpleNails]

Thank you for helping me! Oh boy ok I will try to crop. I am saving your information and making appointment to get things checked. Can you imagine two doctors I want to did not really care they just seen my levels and they just want it to do the radiation or remove it no questions no nothing it’s so sad. I’m so thankful for this information

[PurpleNails Administrator]

Oh dear, that has cropped the 1st set of results & the all important ranges. Delete both the attached images, by going into more & edit.

Add new image. If you are struggling to crop image try blocking out the private identity.

[Hopey62 in reply to PurpleNails]

Omg purpleNails thank you so much