I have been having symptoms of an overactive thyroid since this March when I was six months postpartum.
At first, the doctor suspected Graves as FT3 22.4 FT4 74.18 TSH<0.005 Antibodies TRAb 2.06 TOPAb 279.1 TgAb 145.9. He prescribed Thyrozol 20mg/day (very similar to Carbimazole, widely used in the US) and Propanolol. A week later, my liver function test result was abnormal so Thyrozol was stopped immediately. Surprisingly, my FT3 FT4 dropped significantly and at this stage, the doctor suspected postpartum thyroiditis and told me to only take Propanolol.
In April May and June, all my symptoms were greatly alleviated and FT3 FT4 kept dropping. In June, TRAb became negative (0.25) and I innocently thought I was going to get rid of this.
Unfortunately, in July when I went back to the UK, all my symptoms came back again. The blood test result showed my FT3 FT4 were pretty much the same as in April, though TRAb stayed negative and TgAb became negative, only TPOAb remained positive 177. Thought it might be triggered by what I eat, I avoided milk eggs carrageenan, anything that may contain iodine. Then I was feeling better and worse and better, it was like a circle.
The doctor that I visited in the UK is a lovely gentleman. He diagnosed me with Graves disease with much certainty. He recommended surgery considering that I have a one-year-old and radioactive means at least two weeks separation from my baby. Also, surgery is better for the eyes (I have no eyes symptoms though). However, thinking of the possible complications involved in a surgery always daunts me. Also, it is sad to see the whole thyroid removed and the need to be on medication for life, after all, I am only in my 20s.
He also said it is possible to take Carbimazole for a year to see how it goes. However, the recurrence rate is quite high and if I am going to get pregnant again, the symptoms will likely come back. It is like a gamble.
I feel so distressed and really need your advice!
1. I plan to seek a second opinion. Do you have any recommended doctors?
2. Am I classic Graves? Not even a slim chance of Hashimoto or Hybrid? My grandmother, father, and aunt are all diagnosed with Hashimoto. If I am classic Graves, why have my TRAb remained low and even negative finally? I know the titer of TRAb is one of the indications for prognosis so I am not sure if negativity indicates that my recurrence rate is low when I choose medication?
3. I heard autoimmune diseases are closely linked to gut leaks. But I have no food intolerance. Do you think need a coeliac check?
4. If you were me, what treatment would you choose?
Thanks so much for your help in advance!.
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heyjulie
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I don't have Grave's, but I know how often it is misdiagnosed. There is still a chance that you have Hashi's, so if I were you, I would chose the carbi for a year, while you pursue that line of investigation. A lot can happen in a year. Have you had an ultrasound of your thyroid?
Thank you greygoose. The only concern I have about carbi is that thyrozol had once severely impaired my liver and as far as I know, carbi and thyrozol is pretty much the same thing.
Yes, that would be a concern. But, surely that depends on your dose, doesn't it? I don't really know, because I've never taken it. I just know that I would not be parted from my thyroid without a struggle - especially when it's not even sure that that is the best way forward as you don't know what you have.
Heyjulie I had to stop Carbimazole in less than a week because of liver problems, at the time the consultant told me I could not take any other as they would do the same to my liver.
He explained my options were surgery or RAI, I had time to make my mind up & opted for RAI as I had a lot of major surgeries in the previous years. It worked well for me without any problems. It was 3 weeks to stay away from everybody I found hard. I had regular appts at hospital to check on me & cannot fault follow up at hospital & Drs. Hope you do well with whatever you decide.
Suggest you get FULL Thyroid and vitamin testing privately via Medichecks or Blue Horizon
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
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 FT3 or antibodies or all 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
If TPO or TG antibodies are high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). But moderate raised levels can be due to Graves
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Or Graves. Food intolerances are very common too, especially gluten.
Your body clock has been running very fast, and now it maybe running too slow. Either way, your vitamins and minerals may have been " trashed ". It is essential that your core strength is maintained, and ferritin, folate, vitamin D and B12 need to be optimal for any thyroid hormone replacement to work effectively.
" Satisfactory " results aren't going to get you through this, please get the print out and post your results on here along with the ranges.
Just for reference, I showed no " eye symptom signs " prior to the RAI treatment, but now I live with thyroid eye disease.
There are alternatives to Carbimazole if it upsets your liver function.
I think it would be sensible to stay on the ATD for as long as possible.
It's better the keep your thyroid, as it's a major gland responsible for so many functions within your body.
Whether you'll need to take medication for the rest of your life or not, I would suggest medication to enable you to keep your thyroid is the better option.
Professor Toft, the eminent endocrinologist wrote an article in November 2017 - Thyroid Hormone Replacement - A Counterblast to Guidelines in which he states :-
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasing reluctant to suggest ablative therapy with iodine1-31 or surgery in patients with Graves Disease, irrespective of age or the number of recurrences of hyperthyroidism ".
I think this says it all, as far as I'm concerned anyway.
The thyroid is a major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual well being, not forgetting your inner central heating system and your metabolism.
Living without a thyroid comes with its own set of issues, especially when you can't access the necessary thyroid hormone replacements on the NHS.
I am with Graves Disease, diagnosed 2003, RAI treatment 2005 and now managing Graves Disease, thyroid eye disease and hypothyroidism. I have been refused a trial of T3 by the NHS and am now having to self medicate and buy my own thyroid hormone replacements in order to get my life back on track.
A fully functioning working thyroid supplies you with a lot more than Levothyroxine.
The thyroid is currently known to produce T1, T2, T3 T4 and calcitonin.
A fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3.
Levothyroxine is currently the only treatment of choice on the NHS.
The assumption being that your body will be able to convert the Levothyroxine, into T3 which is the active hormone that the body needs to function and run on.
T3 is currently not easily obtained on the NHS as it has been restricted and withdrawn by CCG's throughout the country.
T3 is said to be 3-4 times stronger than T4 and by simply not replenishing this " T3 loss " you have basically been down regulated by 20% of your potential wellness.
There is also another thyroid hormone replacement, that is Natural Desiccated Thyroid. This is pig's thyroid dried and ground down into grains, and contains amongst other things both T3 and T4. and was the successful treatment for over 100 years prior to the introduction of Levothyroxine and the blood tests of Big Pharma in the 1960's. This thyroid hormone replacement is meant to be available on the NHS on a named patient basis only, but very few doctors will write this prescription.
Obviously if you pay privately, and go to the appropriate medical professional you can acquire both T3 and or NDT with relative ease.
We are not all in that position and many patients on this website have been forced into a position of having to self medicate, and buy their own thyroid hormones, from abroad where prices are much lower than that that the NHS charges in order to regain their health.
Hi pennyannie, thank you very much for providing such detailed information. It's so sad to learn that many people have to self-medicate and buy their own thyroid hormones from abroad when the NHS should be able to cover that. I was really desperate before coming here but after reading so many of your posts I know I need to think twice. Thanks a lot again!
Hi Janey thanks very much for your advice. I have gone private as I am covered by private insurance. Would really appreciate it if you could recommend any top endocrinologists within London. Also, may I ask how you are feeling after thyroid removal? Does Levothyroxine really work as a perfect replacement as you think? My consultant was quite certain that hormone replacement is as good as a normal thyroid.
If I had the choice I would definitely try carbimazole for 18-24 months on titration regime rather than block and replace. It’s less medication and they have to monitor your bloods on carbimazole. You are a young women and your thyroid is worth trying to save. My personal opinion I would never have RAI.
I have Grave's and i am taking neomercazole. My dr said that this is safe compared to other meds, and i think he is correct. I took it for 7 months, and my liver enzymes results taken last week were all normal (aspartate aminotransferase and alanine aminotransferase). Some people here can correct me if these are the correct markers.
I would suggest that you try the meds first. I know 2 people that regretted their surgery. She is hyper so they took away her gland, and has been on medication for life. But she told me that there were still some episodes that she got the symptoms back, like palpitations, fatigue. My cousin who had an RAI has still difficulties and regretted her choice. The thing with surgery and RAI they are permanent. And there is this risk that it will not be better. Although some people do, it is not assured to all. So i suggest that you take the meds first and see, amd you talk with people who had the surgeries and RAI
I would definitely stick with meds for now.... but get those full labs done too. Post partum thyroiditis is common - and some women go through it without knowing what happened other than weight gain and being more easily tired (becoming mildly hypo) until levels drop again at peri-menopause. I suspect that thyroid antibodies go wild with the erratic levels of estrogen. If, in your case, these are definitely confirmed as Grave's ones then surgery may be a last resort, but while there is any element of doubt you should hold on and get much more knowledge about autoimmunity and thyroid illness. Taking Magnesium and taurine can help the heart with palpitations (especially at night). Also taking L-carnitine can enhance carbimazole so you probably don't need as much.. I'll update my reply with links later.... so you'll know I'm not making it up!
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