Hello, I wondered if anyone can give me some advice?
15 years ago, I was diagnosed with Graves disease. The medication (propylthiouracil) helped, but the Graves came back after 2 years. I took this again for a longer period and eventually was taken off of it. Five years ago, I became unwell and, after a battle, managed to once again get a diagnosis of Graves disease. I received RAI and still, to this day, feel ill. My TSH has been okay since. The doctors I have spoken with over the phone seem to think I have Fibromyalgia. 2 weeks ago, I had a private, advanced thyroid blood test showing high thyroid peroxidase antibodies, 36.09 – range 0-34. Can anyone advise on this? Could this mean I still have Graves disease? Thank you, in advance.
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Rosie2-2
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Just testing TSH, especially after Graves’ disease is completely inadequate
Fibromyalgia suggests Ft4 and Ft3 may be low
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
Low vitamin levels are extremely common, especially with Hashimoto’s or Graves’ disease
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you for your reply. I am currently taking 50 mg of Levo. I have had 2 brands over the last 4 years or so. D, folate and B12 was tested. B12 came out as high. (I take D and b12 in tablet form. My blood test was done by medichecks. Also I did have test taken in the morning - I refrained from taking b12 for 2 weeks previously and didn't take levo on the morning of the blood test. I did however drink a cup of tea.
Request/insist on 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
How much do you weigh in kilo approx
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Going by TSH alone totally inadequate especially after being hyper for and having an intervention on thyroid.
For full thyroid function you need TSH, FT4, FT3, TPO & TGab, Also important to test folate, ferritin, B12 & Vitamin D. These tend to be low with Graves.
Graves if a life long condition, destroying the thyroid removes the “victim“ doesn’t cure the autoimmune condition. The risk of over producing thyroid hormones is removed.
TPO is weakly elevated which is common with Graves, but not the most relevant biomarker. They would be Trab or TSI. It’s common for these to rise after RAI, but medics don’t pay much attention to antibodies beyond diagnosis as they cant be controlled.
Two thirds become hypothyroid within a year of treatment, have you never been prescribed replacement levo?
Conditions like Fibromyalgia & chronic fatigue syndrome often diagnosed, but hypothyroid patient report symptoms improved once adequately medicated.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Thank you so much. I am due my yearly TSH blood test at my GP surgery. I will email Dionne. I have hadn't much luck with any of the GPs I have spoken to. The last one referred me to healthy minds. I have lost count of the times they have told me I'm depressed and it's in my head. I was referred to a rheumatologist in April 2020 and actually have an appointment next Sunday! (Fybromyalgia) as I have been diagnosed over the phone. The last 3 years, I tested positive for Anti-Nuclear Antibody IgG. The GP said it didn't mean anything.
I am due my yearly TSH blood test at my GP surgery.
Make sure to book blood test for 9am (or earlier). Make sure you drink water, but delay having any food or drink before test and last dose levothyroxine 24 hours before test
Come back with new post once you get results
After you get test results make appointment with GP for dose increase in levothyroxine
Print out all the links on Guidelines by weight I gave you And the guidelines that TSH should be under 2 or under 1.5
Highlight the detail of dose being 1.6mcg per kilo of your weight
Firmly insist on 25mcg dose increase in levothyroxine up to 75mcg
Which brand of levothyroxine are you currently taking
Accord (Almus via Boots or Northstar via Lloyds) don’t make 25mcg tablets
If on Accord - request more 50mcg tablets per month and cut in half to get 25mcg dose
I too have had RAI for Graves Disease back in 2005 and I now manage lingering Graves, thyroid eye disease- caused by the RAI and hypothyroidism.
I became very unwell some 8 years post RAI treatment and after 2 years of various outpatient appointments, wishing someone would find something and I help me, my only diagnosis was a low ferritin, and my doctor referred to me as a conundrum.
Housebound in around 2015/16 I thought maybe " that Graves has come back aagain " and purchased Elaine Moore's first book - Graves Disease - A Practical Guide, and a little laptop and started researching low ferritin.
I stuggled to read and understand Elaine's book - my dyslexia was really challenging me and on researching low ferritin, I found myself on this amazing forum.
It is essential that you are dosed and monitored on your T3 and T4 blood test results and not your TSH - though in primary care this is likely all that is run at the yearly thyroid blood test.
We generally feel at our best when our T4 is in the top quadrant of the range as this, in theory should generate a higher T3 as it is T3 that causes all the symptoms - too low a level of T3 for you and you will likely have the debilitating symptoms of hypothyroidism just as too high a level of T3 for you will likely give you symptoms of overmedication.
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body which is said to be around 4 times more powerful than T4 and your own abilty to convert the T4 into T3 can be compromised by low vitamins and minerals, especially ferritin, folate, B12 and vitamin D.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and yor metabolism.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.
Personally I believe that when there has been a medical intervention and the thyroid surgically removed or ablated with RAI both T3 and T4 should be on the prescription, for if, and probably when, both these vital hormones will be needed to balance T3 and T4 to a high enough, acceptable level to the patient to reduce symptoms and restore well being giving the patient back their " you " .
Elaine Moore went through RAI for her Graves and finding no help with her continued ill health, and as she was a trained medical technoligist decided to research this poorly understood and badly treated auto immune disease herself.
Elaine now has several books published, and a world wide following on her website and definately worth dipping into as I think it more user friendly than her technical first book.
Graves is an AI disease and as such, in the true sense of the word, for life.
Graves is seen as a stress and aniety driven AI disease and there can be a genetic predisposition and something, at some point in time, has triggered your immune system to attack your body, and when your immune system attacks the thyroid it is because the thyroid is such a major gland that the systems expressed take you to the doctors.
Mainstream medical do not know how to treat Graves other than staying on the AT medication in the hope you can ride out these immune system attacks on your thyroid.
The thyroid is the victim in all this and not the cause.
The cause is with your immune system for which mainstream medical have no answers.
Medical mainstream consider removing the thyroid the solution but all this does is switch the patient from hyperthyroidism to hypothyroidism which in my opinion has been more difficult to manage,
Mainstream medical however see hypothyroidism as the better, easier solution - whether for them or the patient - I do not know - but I was well on the AT drug and had I been given an option, staying on the Carbimazole would have been my choice.
All I know is my own story and drinking this toxic substance was not in my best interests.
I now self medicate as I was refused any treatment option other than T4 - Levothyroxine by the NHS in 2018 and I am now in a much better place and I have my life back as best as it's going to be as at 74, I'm just looking to keep my independance as long as I can.
Yes, the actual idea of RAI is to " just, likely, maybe. make the patient a " little bit hypo "
But seeing RAI is a toxic substance that slowly burns out the gland in situ the likiehood over time is that the gland becomes fully disabled.
It's not an exact science, the dose of RAI , and how long any one patient takes to start suffering symptoms which is why RAI induced primary hypothyroidism is seen as more difficult to treat.
There is no follow up or scan to track the RAI progression , and once you drink the drink, or take the tablet, you are despatched back out into primary care where the doctor tries to understand and medicate with the inappropriate blood test results.
Again even after a thyroidectomy the gland can regenerate - it's not a done deal but i believe a cleaner and more precise procedure is better than drinking a poison that is known to be taken up by other glands and organs in the body.
I am not, but I'm just being considerate to Rosie as she 's getting " pinged " every time something is posted here, whether it's relevant to her actual question or not.
Apparently I have graves disease. I was diagnosed in 2015 and in 2016 I had a total thyroidectomy! But I still have graves disease, it will never go away.
You might find Elaine Moore's Graves Disease Foundation website of interest especially as to the AI component of Graves for which mainstrem medical have no answers.
Your Thyroid and How To Keep It Healthy - written by a doctor who has himself hypothyroidism is a relatively easy to understand and Barry Durrant - Peattfield wrote this book for people like ourselves.
I've done a lot of reading on this since 2016. I regret allowing them to remove my thyroid gland and I now consider them as butchers! You can probably tell how angry I am. It has ruined my life, I have mental health problems ever since.
I totally " get it " - I feel the same but decided to start reading up and educating myself and am now better placed to self medicate with full spectrum thyroid hormone replacement and replacing like for like as near as I can.
It might be pig thyroid - but I haven't developed a curly tail, and it was the successful treatment of choice for over 100 years prior to Big Pharma introducing synthetic thyroid hormones in the middle of the last century.
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