Hi all, I'm totally new to this but I guess I'm just in need of some support. I was diagnosed with Hyperthyroidism in March (orginally referred November) and put on Carbimazole 20mg and propranalol. Have received such conflicting information about next steps etc and haven't even received an official diagnosis of what type of hyperthyroidism I've got. I've been told it's autoimmune but nothing else (I did try to dig further but got nothing) and my GP has stated there is no further details about this either although he believes it was triggered by Sepsis which I developed July last year!
I've had one consultant tell me that based my my age, current age of my son, plan to have another baby, levels and the fact that this will be a "life long condition" the most feasible and safe route is surgery- but only once my levels are consistently managed (which he has said will take about a year). Then I had another tell me that i'll be on carbimazole for 18-24 months or medicated for the rest of my life and if I want children to see my GP/Family planning so he can switch my medication.
Has anyone else received conflicting plans? what do you recommend I do next? feeling so lost as I just want it fixed
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If I was you I would join Elaine Moore's site she has a lot of knowledge about hyperthyroid and Graves' disease. Some people can go into remission and I am on my second now but it has been a bumpy ride. You can read my story on my profile page if you are interested.
Also I would do your research about having RAI or your thyroid removed because you might struggle to get the correct treatment afterwards. I decided against it and I still have my thyroid 12 years later and I am glad I decided against it.
thanks for the link and I'll certainly have a read of your story too. Not going to lie- I have considered paying private for a second opinion as I really feel conflicted.
I would ask if anybody on this site has found a good Endocrinologist who knows about hyperthyroid because I haven't found one yet and I have stopped looking now. I thought mine was an expert because he had trained in Oxford and had written a lot of papers about thyroid disease but I was wrong. The first thing he said to me was you can either have RAI or your thyroid removed. I decided to research it because I wasn't convinced that was right for me. I am glad I didn't take his advice because at the moment I feel well and I am hoping this time this remission lasts longer than 4 years. One thing I do know is what set all this off again was stress because last time I had a relapse was when I had gone through a very stressful year.
I wonder if it was your post I was reading about and like you say it's hard to make a decision which to me seems very big when I don't feel informed enough. I'm a teacher and have returned to work off maternity leave to face an OFSTED inspection and a pandemic haha! but only yesterday read about stress worsening conditions so need to consider that too when thinking about work! glad to hear you are in remission- again not something that has been explained to me- do you have Graves disease then? if you don't mind me asking? I'm struggling to get me head round the different types
Yes I think I do because when I was having a ultrasound on my multinodular goitre I asked the Consultant about it and they told me I definitely don't have hashimoto's disease because my thyroid looked nothing like someone who had the disease and she had seen hundreds. After lockdown I will be contacting the Endocrinologist to ask for a copy of my records and results so I can see how he came to his conclusion of Graves'. We didn't part on good terms because he tried to offer me counseling for feeling so ill so I walked out of his clinic never to return. A lot of people can take Carbimazole for a number of years to keep it under control as long as they have regular blood tests. Elaine Moore had RAI because of Graves' and she helped me a lot when I was first diagnosed.
It’s interesting because I have found the genera approach to treatment quite dismissive. They aren’t really interested in symptoms, how I’m feeling in the medication or the impact this is having on my quality of life. I went from being ubmedicated to being on Carbimazole, propranolol and the pill all at the same time so I don’t know what symptom is related to what any more!
I walked into the consultation with a resting heart rate of 116 and was asked if I was anxious at which point I replied “no it’s why I’m here” and showed my recordings of my heart rate during my sleep which rarely dropped below 90.
Apparantly my last bloods have shown my thyroid stabilising which is a positive I suppose!
First step is to get FULL Thyroid and vitamin testing
do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 if you have autoimmune thyroid disease (Hashimoto's) hypothyroidism or Graves disease (hyperthyroidism) diagnosed by raised TSI or Trab Thyroid antibodies
Ask GP to test vitamin levels
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, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Ok - there are two main thyroid health issues that start with a phase of hyperthyroidism and they are either Graves or Hashimoto's both auto immune thyroid diseases.
The only way to know which one you are dealing with is a diagnosis confirmed with the medical evidence, through a blood test and for Graves you need to be proved positive for either the TSI or TRab antibody being over range.
Graves is initially treated with anti thyroid drugs, like Carbimazole.
Hashimoto's is not treated with any anti thyroid drugs as the hyperactive phase of this disease is transient.
Do you have any blood tests, prior to going on the AT drugs, and what were your symptoms ?
The AT drugs block your own natural production of thyroid hormones and the idea is that you will " ride out " this period, and your levels of T3 and T4 will drop back down into range and your symptoms reduce to more comfortable levels.
The NHS tends to give a 18 month window for treatment with AT drugs adjusting the medication as and when they see fit and it can take considerable time and expertise to balance and manage the thyroid hormones during this phase of the disease.
Some endocrinologist add back in some thyroid hormone replacement if your levels go too low and you start experiencing symptoms of hypothyroidism, and this is called Block and Replace.
Some endocrinologists block your own production and reduce the AT drug slowly, hoping your own production will gentle come back on line, to support you.
Ultimately, the wish is that you " find remission " and can get on with your life :
If this isn't thought to be possible some endo's suggest you have your thyroid removed :
Others suggest RAI thyroid ablation but considering your wish to have further children this may not be an option for you :
Others suggest staying on low dose AT medication indefinitely - and " play for time " :
Both Graves and Hashimoto's are auto immune disease and the thyroid is the victim in all this and not the cause - as the cause is your immune system attacking your body and more especially, your thyroid.
The NHS do not know how to control the auto immune aspect of either disease, and so believe that by removing the gland in the case of Graves Disease, they have removed the problem.
The thyroid is a major gland responsible for full body synchronisation, it's your engine :and if permanently in overdrive as with Graves it can be considered by some as life threatening as the symptoms expressed can be disturbing, whilst other patients may feel just a bit odd :
I think it's a life long condition either way as you'll be on medication when hypothyroid, and currently the NHS is not routinely prescribing full thyroid hormone replacement.
There's a lot to take in and understand, and in the first instance you need confirmation of exactly what AI disease you have and the relevant antibody blood test actioned.
It will help you get a better understanding if you take an active part in your treatment and suggest you ask for copies of all your blood test results to see how your levels have changed, according to AT dose levels and the resultant T3 and T4 blood test results.
It's also about how you feel, and giving the medic some feedback and not just a number crunching session with an endocrinologist and a computer.
I'm with Graves Disease diagnosed in 2003 and RAI treatment in 2005 - a treatment I deeply regret, and I now manage lingering Graves, thyroid eye disease, and hypothyroidism.
I became very unwell some 8 years after this treatment and have learnt of my situation back to front, and I now self medicate as I was unable to access the appropriate thyroid hormone replacement through the NHS :
If you are diagnosed with Graves you might like to read around the subject in more depth, and apart from learning from this amazing website I found the Elaine Moore Graves Disease Foundation website another excellent learning tool.
I believe Medichecks, offer a blood test for the Graves Disease antibody and the details are on the Thyroid uk website - but as previously mentioned this test should have already been run, and the results, in the system somewhere.
Thank you so much for this detailed reply! I was having fortnightly blood tests after I gave birth (July) due to blood loss and Sepsis. By November I still wasn’t feeling right and my GP basically screened me for everything and my thyroid got flagged. She stated then that she believed it was sub clinical hyperthyroidism triggered by the sepsis and referred me but I didn’t get seen till April and was left unmedicated till then but had 6 weekly blood tests which all came back abnormal. In April I was told it’s wasn’t postpartum Thyroiditis because of my levels and the Amount of time since birth but that it was an autoimmune problem but they would test for what type with my next bloods. I’ve had two sets of bloods since then and I’ve noticed that neither have tested for antibodies just TSH, T3 and T4 And when I asked the consultant last week he got quite snotty and just said “you have a n autoimmune disease” I asked if it was graves or something else and he said “ it’s your antibodies attacking your thyroid” and my GP stated there was no official notes about what type on my record. My partner and I would have been trying for our second now but my health is still all over the place and we are no clearer in what the best plan is. Last phone consultation I listed off a raft of long term symptoms I’ve been having and he said well you thyroid is stabilising so go back to your GP and get tested and the GP stated he doesn’t know what he’s testing for. 🤦🏼♀️
I hate to say, but going by my own, and other people's experience that I read on here, you are not alone.
Is there another doctor who might just know, or if s/he doesn't is prepared to help you at least to find out, what antibodies have been tested, and what medical evidence is there of anything untoward.
Your doctor needs to test for both thyroid auto immune diseases, namely a testing for both Graves and Hashimoto's.
I've read recently on here that these blood tests can only be done by an endocrinologist and would think ??? automatic ???? if your laboratory results from your thyroid blood test look out of range as surely this is what the labs are for, so to make a further in depth analysis to help reach a diagnosis with the necessary medical evidence.
Yes you would think it would be a fairly simple process but I’m at the end of my tether ringing between GP and Endo to get What I believe are simple answers. It puts me off even phoning them coz I’m sick of my own voice so I’m sure they are too!
Based on the consultant reaction I had a distinct feeling he didn’t know because he hasn’t tested for it. I also have patient access online and would think everything would be visible in there but it’s not- can only see current prescriptions and appointments.
I'm afraid that sounds like my surgery and my treatment ;
Can offer a virtual " hug " -
It's so draining, and when not well, I found it all too exacerbating. and was made more ill, trying to get well, taking the conventional route through the doctor, and it just became impossible.
This was the reason I decided to come out of the system, as my thyroid, or more precisely then the lack of my thyroid, being my only health issue, and I've managed better by myself, but I fully understand this route is not for everyone.
Hello there. Sorry you find yourself having to learn all about thyroids and antibodies,on top of being a mum, handling a Global pandemic, and trying to teach more children than will fit into your classroom, while making sure they don't breathe on each other.
Already a lot to handle, even if your thyroid wasn't messing you about.
To give you an Ofsted Inspection on top of that is just cruel.
So anyway .. the first thing to do is to avoid stress !.....I have no idea how you are going to manage that, Lobotomy might do it ? But seriously try not to let thyroid problems worry you. Just accept that the understanding of most GP's and Endocrinologists is 'sub optimal' on the subject, but many patient's have walked this path before you , and so good information is getting easier to find all the time.
And remember that all the people who have thyroid disease that didn't end up causing persistent problems, are not on the internet talking about it, they are out and about having children and getting on with life. My Auntie got hyperthyroidism in her 20's and had a fine life, teaching in Kenya and Papua New Guinea, Had a child and lived until over 80, and was still keeping sheep until she had a stroke at 79.
With regard to the Antibodies ;
As far as i understand it GP's can do the ones which point to Hashimoto's ;
TPOab (Thyroid PerOxidase antibodies)
TGab (ThyroGlobulin antibodies)
whereas the Graves antibodies are only tested when Endocrinology orders them;
TRab (Tsh Receptor antibodies)
TSI (Thyroid Stimulating Immunoglobulins)
This is a bit of an oversimplification of which antibody means what, but you've got enough to get your head round already!
Just put your 'calm and assertive' hat on to make sure you get YOUR test results, and can see WHAT has been tested and what hasn't. The receptionists are trained to fend you off, and it threatens the doctors ego , but you have a legal right, it's in your own interests to be knowledgeable about your treatment, and there are thousands of thyroid patients who now expect to see their test result's .
Asking for them does not make you 'awkward'. If you are made to feel that way, ignore it and carry on with 'calm and assertive' . They give in when they realise you wont get fed up and go away.
I believe you need to get 'Enhanced Access' to see test results online, but i'm not sure about how the online works as i went the old fashioned route and got 17 yr of historic records via the 'Subject Access Request' and now expect my GP to tell me new numbers before we talk about what he want's to do.
Thank you so much for your understanding- honestly been such a rough 6-8 months! I'll contact my surgery and see if I can get enhanced access or at least copies of all the tests etc so I know what questions to follow up with the Endo (assertively but calmly as you say!) fantastic advice thank you!
In the unlikely event that you can find time between juggling toddler, tooth brushing, global pandemic and Ofsted panic...........
Here are some links to a good Canadian site for Thyroid Patient's by Tania Smith, which explain more about what is and isn't known about which antibody does what, and how there are more varieties of autoimmune thyroid problem than are mentioned by simplistic thinking medics.
It is important you understand for the future that it may be suggested to you that surgery or ablation is a quick and easy solution , and Thyroid Hormone Replacement (Levothyroxine tablets) is a simple matter of 'take a little pill every day' .
If that was always true, this forum would not exist.
If you get to the stage where this is being discussed as an option
Be aware;
you can say no to both of these options and staying on the anti thyroid drugs is a possibility that may be preferable in some cases.
Surgery /ablation is a cost effective solution for the NHS
, which is NOT the same as saying it is in your best interests.
If you get to the point of being offered surgery /ablation ,for Pete's Sake come back here and discuss before agreeing.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Frustrated
Frustration
frustrated
Frustrated with Endo 
Frustrated as always :(
