I have been taking Propylthiouracil for a year now. I have been advised that I should now consider RAI or surgery as my consultant does not advise the continued long term use of medication in someone of my age (56). Does anyone have any experience of taking the medication long term?
FT3 - 6.8 (3.1-6.8)
T4 - 15 (10-22)
TSH - 0.01 (0.3-5.5)
Both your previous posts 2 and 3 years ago it was strongly suggested you might have Hashimoto’s
healthunlocked.com/thyroidu...
When were FULL thyroid and vitamin levels last tested
Have you had TSI or Trab antibodies tested to actually confirm Graves Disease ?
Or TPO and TG antibodies tested for Hashimoto’s
You can have Hashimoto’s and Graves together at same time
Vitamin levels were very low 2 years ago
What vitamin supplements are you currently taking
Have you had coeliac blood test done and are you on absolutely strictly gluten free diet
Thank you for your response.
Full thyroid and vitamin levels were tested in July 2020.FT3 - 11.5
T4 - 24
TSH 0.01
Vitamin D - 81.2
Vitamin B12 - 354
Ferritin - 17
Folate - 10
As you can see, my FT3 & T4 have improved in the last year. I was tested for Graves Disease and had a coeliac blood test in 2017. No, I'm not on a gluten free diet.
I take Vitamin D3 2200IU
Magnesium 30mg
Ashwaganda Extract 500mg
So what were TSI or Trab antibodies test results and ranges
Have you had TPO and TG thyroid antibodies tested too
Folate, ferritin and B12 - please add ranges
Ferritin is clearly extremely low
Are you vegetarian or vegan
You need full iron panel test for anaemia when ferritin is under 30
Graves patients tend to have high ferritin, but obviously not always the case
Have you had cholesterol tested
B12 and folate look low - can you add ranges
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B is an option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
I follow a vegetarian diet apart from eating meat once a week which is what my consultant advised I should do, based on my blood test results. I can see that I haven't had the full range of blood tests needed. I've sent off for a kit. I can see that I need to change my vitamin intake/diet. Will re-test again in 3 months and post results. Really appreciate all the information that has been provided today, thank you.
Suggest you work on improving low B12, folate and ferritin levels and trialing strictly gluten free diet
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and is ALWAYS worth trying
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
Come back with new post once you get FULL iron panel test results for anaemia, members can advise on next steps
humanbean and SeasideSusie very knowledgeable about iron and ferritin
Meanwhile Looking at increasing iron rich foods in diet
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
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
Thyroid disease is as much about optimising vitamins as thyroid hormones
Then get FULL thyroid and vitamin testing done privately including TPO and TG antibodies in 2-3 months
Come back with new post once you get results
Dorset15
Ferritin - 17 (13-150)
You need to speak to your doctor about this.
From: cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
An iron panel consists of serum iron, ferritin, transferrin saturation % and Total Iron Binding Capacity (TIBC). This will show if you have iron deficiency.
A full blood count will show if you have anaemia.
You can have iron deficiency with or without anaemia.
Your GP should prescribe iron tablets and regularly monitor your levels.
Ashwaganda Extract 500mg
I don't know why you are taking this but be aware that Ashwagandha is an adaptogen and is known to reduce cortisol levels.
I take Vitamin D3 2200IU
Magnesium 30mg
Magnesium is an important cofactor of D3, it helps the body convert D3 into it's usable form. 30mg is a very low dose, the usual dose is between 350-450mg.
D3 has another important cofactor - Vit K2-MK7. D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can cause problems like calcification of arterties, kidney stones, etc.
Thank you, I obviously need to increase Magnesium (amongst other things).
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 autoimmune thyroid disease (Hashimoto’s )
Previous post mentions goitre.
Have you had ultrasound scan of thyroid
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
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). But can also be slightly raised with Graves’ disease
Low vitamin levels are particularly common with Hashimoto’s and Graves’ disease
Gluten intolerance is often a hidden issue too
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Hyperthyroid = Graves’ disease
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
medichecks.com/products/tsh...
Good info on Graves’ disease
ncbi.nlm.nih.gov/pmc/articl...
Thank you so much. That's a lot of information. I will get tested privately I think so that everything is covered.
See this study, posted by 'helvella' a couple of months ago.) ... healthunlocked.com/thyroidu... the-longer-the-antithyroid-drug-is-used-the-lower-the-relapse-rate-in-graves-disease-a-retrospective-multicenter-cohort-study-in-korea
also . having looked at you previous replies on this forum, and older posts.... (assuming you are still being given 3 month blood tests, and are on an endocrinologist's list ?) you need to be aware that it will be much much cheaper for the NHS to give you RAI/surgery and then discharge you to primary care (GP) to treat the ensuing hypothyroidism , where they only have to give you one blood test a year and a few quid's worth of Levo. So when you read that RAI is the 'preferred option' , it is 'preferred' because it is more cost effective for the NHS than long term low dose antithyroid drug monitoring. Not because it is necessarily the best choice for all patients.
your slightly raised fT3 levels at 8/9 ish were not necessarily anything to worry about unless you had hyperthyroid symptoms.
Did they ever prove you had elevated Grave s antibodies (TRab -Thyroid stimulating hormone Receptor antibodies) before giving you antithyroid drug's ?
Thank you, that's very interesting and helpful.
Hello Dorset ;
How do feel on the PTU - if well, I'd suggest staying on the anti thyroid medication as living without a fully functioning thyroid isn't as easy it may have been explained to you.
The NHS work to guidelines and generally speaking they allocate around a 15-18 month window for treatment with the AT medication as an outpatient and in my case I was told at my very first O/P appointment i was to be given RAI the following year.
The NHS need to move people through the system as quickly and effectively as they can and encouraged to reduce O/P waiting times not extend them - as time is money.
I had RAI for Graves in 2005 at age 58 and deeply regret this treatment but wasn't given an option let alone information regarding the implications of taking RAI and have been more unwell since having this treatment but finding no help nor understanding from within the NHS service.
I just wish I knew back then what I do now as I would definitely have held out for long term treatment with the anti thyroid medication.
In 2017 the eminent physician and endocrinologist Professor Toft wrote a very interesting article which you can find on here in full, and covers everything you are likely to be considering and it makes perfect sense and sums up the before and aft of living without a fully function thyroid.
I quote from page 3 of Thyroid Hormone Replacement - a Counterblast to Guidelines :
" 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 iodine1-31 or surgery in patients with Graves Disease, irrespective of age or number of recurrences of hyperthyroidism. "
I now self medicate and buy my own full spectrum thyroid hormone replacement as the NHS routinely only prescribe one treatment option though, in theory, others options are meant to be available on the NHS. I also need to arrange my own private blood tests as in primary care I'm afraid the appropriate thyroid blood panel isn't generally run either.
Thanks to this forum which I found in around 2015 when housebound and with no answers from over 2 years going around various O/P departments I've managed to turn things around myself - it's true - people who are well are getting on with their lives and not writing on here how wonderful they feel - so yes, I'm just one voice and this is just my opinion.
Please consider all options and keep your thyroid as long as you can, as the management of primary hypothyroidism is sadly lacking.
Here is a link to the article pennyannie mentions rcpe.ac.uk/sites/default/fi... Thyroid hormone replacement – a counterblast to guidelines*
Prof Toft was the Queen's physician when she was in Scotland.. and judging by the state of her health it seems she chooses good ones.
Thank you.
Thank you, that's really helpful and what I suspected. I was offered RAI or surgery at my first appointment 4 years ago before even trying medication. At that point my levels were hardly out of range. I had been diagnosed with osteoporosis (which I have now improved with diet and exercise) and was told that unless I took action regarding my thyroid, my osteoporosis would get worse.
Your results never suggested Graves’ disease…..because Ft4 and Ft3 were only just out of range
That’s why it’s so important to get those actual results from TSI or Trab Antibodies test
Graves’ disease can ONLY be confirmed by high TSI or Trab antibodies
Slightly raised Ft4/Ft3 could be Hashimoto’s or possibly a “hot” nodule
Ever had ultrasound scan of thyroid?
Don’t be bullied into RAI/thyroidectomy…..so many patients struggle badly on just levothyroxine and NHS in most part refuses to prescribe T3 alongside levothyroxine
Hey there :
I was looking back and see the mention of a goitre ?
I understand these can be very slow growing and if not interfering with your breathing, drinking and eating, why do anything ?
What was the result of the Graves blood test - we need a positive and over range TSI ( a thyroid stimulating ) and or a positive and over range TR ab ( a thyroid blocking ) antibody.
I notice you have added a blood test above but with no ranges ??
I can immediately see you need to build up your ferritin - this level can be very debilitating :
Your core strength vitamins and minerals need to be maintained at optimal levels to help support you through all this :
They may well be in the NHS ranges as the ranges are too wide to be sensible and designed for healthy people.
I now know to be as well as i can be I need to keep my ferritin up at around 100: my folate at around 20 : my active B12 at 75 ++ : or serum B12 at 500++ and vitamin D at around 100 :
P.S. And yes, you've probably noticed my understanding of cut and paste is scissors and glue and my colleague Tatt - has come to my aide.
There was a mention of a goitre at my original endo. appointment in 2017. Since then I have never seen a consultant face to face, everything has been conducted by telephone. I've never had a scan. When I spoke to the consultant recently I queried she was advising surgery yet I had never had a scan. I have a face to face appointment in November to decide on either RAI or surgery, neither of which I intend to have. I am feeling very pressured into having one or the other.
I can't find the results of the Graves blood test to hand.
The ranges were as follows:-
Full thyroid and vitamin levels were tested in July 2020.FT3 - 11.5 (3.1 - 6.8)
T4 - 24 (10-22)
TSH 0.01 (0.3-5.5)
Vitamin D - 81.2 >50
Vitamin B12 - 354 (197-771)
Ferritin - 17 (13-150)
Folate - 10 (2.1 - 26.8)
I need to get all my levels tested privately I think so I get a full picture of where I am at.
Thank you.
Yes I recognise there is pressure there, as the endo's are pressured to push you through the system as quickly as possible, and are actively encouraged to reduce O/P waiting times.
Well, considering you have never had a scan and no proper follow up to speak of, I think it only correct that this happens first so you have an understanding of what is going on, and can ask for the medical evidence of which antibodies are over range and positive and on which your treatment has been based and what options are open to you, and this should include the option of long term AT drug medication.
There are people on here who have been long term AT medication for 10 years ++ with no issues an simply adjust their medication according to life stressors.
If we are looking at Graves Disease this is an auto immune disease and your thyroid the victim of an attack by your immune system - calming down your immune system response will calm down your immune system mistakenly attacking your body.
It seems as though you have been put into a " holding " pattern until the current situation is resolved and hospital's try and return to a " normal service ' .
These results are a year old, so yes, it would be in your best interests to have this set run again so then we'll be up to date and offer considered opinion.
Are these the TPO & TG Results? If not, what should I be looking for?
Serum Thyroid Peroxidase antibody concentration <4.00 (0.0 - 24.9)
TSH receptor antibody level <0.3 (0-0.9)
These results are from 2018.
OK - you have there a TSH receptor antibody test -
I think that's another name for the TRab - but it's showing in range at 0.3 :
The TPO is I think the Thyroid Peroxidase result which is in range :
TG is another antibody test usually run for Hashimoto's Disease - I think :
However I've read on here that some people need to have a thyroid scan to eliminate a diagnosis of Hashimoto's as not everyone carries over range and positive antibodies.
All antibodies wax and wane ;
Further to my previous post, I think I've answered my own question. I've never had a TG test as my notes say the test is only offered to patients who have a thyroidectomy for thyroid cancer.
Many Hashimoto’s patients only have high TG antibodies
Obviously they struggle to get diagnosed as NHS only tests TPO antibodies
So first step is to get full thyroid and vitamin testing done privately including TPO and TG antibodies
But meanwhile working on improving low vitamin levels is essential too
20% of Hashimoto’s patients never have high thyroid antibodies
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
Hot nodules can be seen on a scan.
mayoclinic.org/diseases-con...
Private ultrasound scan of thyroid £150
If you really do have Graves' Disease (and you appear to have no proof, but I haven't read all the replies in this thread), be aware that the NHS is not allowed to force you into having RAI or surgery. Nor are they allowed to stop prescribing anti-thyroid drugs as long as you need them.
For more info on thyroid antibodies, see this link and click on all the + signs to see all the info provided.
I see from your previous post you had unusual symptoms with carbimazole & was switched to PTU.
Are you currently on a low dose?
I don’t have autoimmune my hyper is caused by a toxic nodule so I’m also facing long term medication on anti thyroid.
From what Ive read the risks associated with anti thyroid medication do not alter over time. So the risks of serious side affects remain, but do not decrease or increase. The “time limit” is arbitrary and set by protocol. (Partly cost driven).
I take been taking carbimazole over 2 years. I was contacted shortly after first hospital appointment & was informed during a 2 min phone call that RAI was my treatment plan. I had been taking carbimazole less than 3 months. The doctor wouldn’t discuss options or any queries I had, saying it would all be on the paperwork…..it wasn’t.
I phoned various departments and eventually spoke to a technician in the nuclear department, he told me the safety instructions I was after would be advised at the time of the treatment. Not very helpful when I have both work commitments and are the main carer for family members with complex needs.
So I filed away that consent form & it’s still there 2 years later, unsigned, with 4 of the - out of date - British Thyroid foundation patient information leaflet they keep sending to me.
I am preparing for the possibility that my endo will discharge me back to GP for them to monitor me long term. As they Previously suggested I be referred back once I’m ready to undergo RAI. I heard this happening to others too, if your GP is good it’s might be better for you. I would prefer to stay with the specialist nurse.
That's really interesting, thank you. Yes, I had dreadful side effects from taking Carbimazole in 2018. I was then unmedicated until August 2020. My FT3 & T4 were back within normal range within a month of starting PTU and that is where they have stayed. I am on 1 x 50mg a day.
Hi. I take PTU. I have done this now for 6 months. I have TSI and Trab positive antibodies along with positive TPO antibodies. I’m struggling to understand how u r on PTU with no confirmed antibody Graves testing? As a matter of interest my T4 was 90 range 10-22 and T3 40 range 2.0-6.0. I have also been offered RAI/surgery. I would not consider these permanent options not unless another organ in my body was failing. U can manage well on PTU long term. I will not be pressured into a permanent option to suit the needs of others. As I have told my dr and Endo. This is my body and this is my choice. Others do not get to decide. I feel u cannot make a decision as you do not have a diagnosis of Graves.
Thank you for your response. I take PTU because of the side effects I suffered from taking Carbimazole and my FT3, T4 & TSH were out of range. I'm no longer considering permanent options and will continue with PTU and am going to have blood tests privately to build a better picture of my health at this present time.
long term thyroid medication worries 
Long term Carbimazol use and Liver Damage 
Long term Carbimazole 
Long term side effects T3
