I am new here and I have to say reading some posts gave me more information than any doctor I have seen over the last 10+ years. I am still a bit confused and don't even know where to start exactly.
I was diagnosed with Hashimoto initially and my Anti-TPO were very high. This was a little over 10 years ago and I don't remember or have any tests to show my other values(TSH,T3,T4 etc.). I know over the years I went from being hypo to being hyper. I dealt with all of the possible symptoms and been on different treatments the latest one being Carbimazole. Then 3 years ago after giving birth prematurely my new diagnostic was Graves disease. Sadly I don't have any copies of my tests apart from a letter addressed to my gp from 2019 which I will attach. Since 2019 I have been taken off any treatment as my TSH,FT4 and FT3 are in normal range. No other tests have been requested apart from these 3 during my last visits to see the specialist. Also I never had a scan of my thyroid. Since I have been off medication I have been dealing with brain fog, problems concentrating, tremors, palpitations, feeling very tired no matter how much I sleep, irritability, mood swings, anxiety,sensitivity to cold and heat and the list could go on. I have discussed this with the specialist and gp and they put these symptoms on other causes like being a working mum and so on. I am due to see the specialist in September again but this has been switched to a telephone consultation so no tests. I feel like I can't function like this and even thought this is all in my head but I am not myself and don't know what to do. I was thinking of seeing a specialist privately if anyone has any recommendations, I am even willing to travel. I live in Milton Keynes but would go anywhere at this point.
Can you still have symptoms with so called "normal" tests?
I was thinking of having some tests done privately so I have an idea of my present situation and also see a full panel since I don't think I ever got most of them done. Based on my history can you advise which "package" would be best for me from medichecks and also if I should do the finger prick test or go to a clinic?I have seen some negative feedback on the finger prick ones with not being very accurate.
Sorry for the long post. Any advice would be greatly appreciated.
Many thanks
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Roxi_c
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Yes definitely get FULL Thyroid and vitamin testing
Ft4 and Ft3 look on low side ...essential to test vitamins
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 as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
You could Ask GP to test vitamin levels ???
Or test with thyroid via Medichecks or Blue Horizon
Would be tempted to use Blue Horizon as this includes cortisol test ....might be helpful
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
Many thanks for your reply. Very informative, I think I'll go with Blue Horizon and I'll post once I get the results. Really looking forward to seeing what's going on.
Many thanks again for suggesting Blue Horizon. Just got my results back. The only doctors comments included in the result were that I have both antibodies high like seen in Hashimoto and Graves. Please see below. As I mentioned initially my diagnostic was Hashimoto(10 years ago) but then after giving birth(2017) I was told it is now Graves so I am a bit confused. Also my other values are within range but could I still develop the symptoms mentioned in my earlier post?I am looking at the list I have received from Louise and maybe book a private consultation as well. Also was thinking maybe an ultrasound would help. I don't really know what my next step should be. Please let me know what you think, really appreciate it.
Are these vitamin levels natural, or do you supplement...if yes...what exactly
Ft4 is slightly higher than typical...otherwise everything looks pretty good
Optimal vitamin levels we typically say
Ferritin at least around 70
Vitamin D at least around 75....around 100nmol might be better
B12 around 500
Folate is a bit low...increasing folate rich foods or taking a good quality daily vitamin B complex , to improve to half way through range ....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
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)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Many thanks for your reply. I still feel horrible. Still dealing with brain fog,tremors, palpitations,feeling very tired,mood swings and sensitivity to cold and anxiety. I supplement with vitamin b 12 and vitamin d. I also take an A-Z complete vitamins and minerals. I stopped taking them 6 days before the blood test. I'll have a look at your recommendations. I'll also take them after breakfast as currently I take my vitamins early in the morning and have breakfast 1 hour later.
Many, many Hashimoto’s and Graves patients find strictly gluten free diet helps or is essential
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Gluten free diet often very slowly lowers TPO antibodies...can also improve brain fog
I've ordered the coeliac home test just to rule this out. I will also try the gluten free diet and see if it helps if the test is negative. I'll do anything at this point. Really appreciate the links and articles , very informative.
Have they not been monitoring your bloods at all since 2019 when they stopped Carbimazole ?
They seem to be forgetting that if you were previously hypothyroid, you most likely still will be at some point, and need continued monitoring.
It sounds like they are treating you as though you only have Graves, and are waiting to see if you go into remission after Carbimazole is stopped.
i think one way or another you need to insist on some bloods done before you speak to his specialist in Sept ,and since they know you are previously Hypothyroid i really think the NHS should be doing it. However there is wisdom in doing your own so you get the full set without the aggro of getting the NHS to do an FT3, (they may well do just a TSH, which is as much use as a chocolate teapot)
I would advise you to get hold of your historic blood test results, it will make it much easier for you to understand what's been going on if you see the actual results
I'm a bit shocked that with your thyroid history they are both trying to tell you that these symptoms are unrelated and not even bothering to test your TFT's to see what's happening.
Edit;
If you have been having thyroid blood tests since stopping carbimazole and they have been declared 'normal' , you need to see for yourself what these 'normal ' numbers are. 'Normal is too broad, and could still be 'wrong' for you.
Many thanks for your reply. I think I had just one more test since the one I posted at the beginning of 2019. I don't have the results but they said it was "normal" values like the one I posted. I will go with private testing with Blue Horizon as it seems faster and easier than trying to convince them otherwise. I tried to ask my gp for a copy of the tests at least for the last 2 years and they said I need to ask the specialist at the hospital that was seeing me. When I called the specialist he said he will print them at my next appointment which now is just a phone consultation in Sept as they are not doing face 2 face routine consultations anymore due to covid19.
what you've been told about access to historic bloods is sort of true , ie the GP's may not have the full ones from an Endocrinologist dept, and also you don't have right to see the latest ones until the person who ordered the test has seen them first .
But you do have right to see historic ones. I'd suggest phoning the endocrinologist and asking to be sent a printed copy of historic tests , so that you can see them before you talk to him. If they say they can't email them due to data protection reasons , you can remind them that there's a thing called an envelope.
You don't need to give a reason for wanting them , but if you want to, say it's so that you can make best use of his valuable time at the phone appt, or simply that 'they are for my records'
If you are getting them you may as well get the lot rather than just 2 yrs ie. from the initial diagnosis of thyroid problems.
since your appt is in Sept , it's possible you may not get results before then . (if they drag their feet )
If this happens then at least make sure you ask the endo if you have ever been tested for the antibodies for Graves , which pennyannie mentions ~TRab (Thyroid stimulating hormone Receptor antibodies) ~or possibly TSI.
And also make sure he give's you the latest 'normal' ones TSH+[range] FT4+[range] FT3+[range]
Presumably ( since you're not sure ) the latest blood test was a while ago........ there is no way he can decide what to do with you unless he knows what your blood are currently, so while you are on the phone asking for your historic bloods, i'd be asking whether they intend to get some current bloods done before you speak to him , and if not why not ?
One more question to clear up the confusion at this end ..... were you ever on Levothyroxine previously ? it's not clear from your initial question.
I will phone the endocrinologist tomorrow and hopefully I'll have some positives updates. They should have all the records as it's been the same place since I was diagnosed 10+ years ago. I should have requested a copy every time but for some reason at that time I just wanted to be in and out and took everything they said as it was without seeing much. Hindsight is a wonderful thing. If my memory serves me right I believe they tested for antibodies for Graves but I'll confirm this at the next appointment if I don't get the copies by then. Yes I was on Levothyroxine but for a short period of time.
This illness can be very exhausting and the numbers can overload your mind especially as they might be utterly meaningless anyway. You can start to make sense of it all with the support offered on here and feel more informed. I have been there all those sheets of numbers were indigestible just getting from moment to moment was my focus, but I was lucky the Endo and GP made an effort by sending me the correspondence. Those blood tests will help tell your story and get great insight here. I didn’t have Graves but a more unusual form of thyroid disorder with some aspects of Graves. I have only really worked out what is was in the last year and I was diagnosed 8 years ago! This type has no goitre.
Yes indeed it's very exhausting I feel like I am playing catch up lately. I regret not taking this into my own hands earlier and requested copies of my blood tests and just read more about the condition and look for different forums. Luckily now I'll put all my effort into having this figured out
Just got my results back. The only doctors comments included in the result were that I have both antibodies high like seen in Hashimoto and Graves. Please see below. As I mentioned initially my diagnostic was Hashimoto(10 years ago) but then after giving birth(2017) I was told it is now Graves so I am a bit confused. Also my other values are within range but could I still develop the symptoms mentioned in my earlier post?I am looking at the list I have received from Louise and maybe book a private consultation as well. Also was thinking maybe an ultrasound would help. I don't really know what my next step should be. Please let me know what you think, really appreciate it.
Say you want copies now - it is your right to have them you should not have to wait until September you need to get them analysed here before this telephone consultation not dropped on you so you can’t do anything about them or question anything that is not up to par. I was sent letters every time from the endo with all my blood test results so I have all the info. That was good practice. Unfortunately some of them seem to think anything is normal even out of range results when it is not. Each person has there own optimisation levels so in range is simply not good enough. Make sure you get copies everytime From now on and file them them in a folder for future reference.
I'll definitely call on Monday morning and request all my past blood tests as I never got a copy only seen them on their screen and really can't remember anything. I'll keep everything from now on. Learned my lesson
It’s only a matter of collecting and collating it all - good the records exist - so you can get a better picture of what was going on with the blood tests and have some facts to work from for any comments from the forum and matter to discuss with the Endo. They are useful to you now, where before you had to go on what the doctors told you I could not make head nor tail of sheet after sheet of gobbledygook they sent me! My mind was glacial & dealing with all that was a complete non starter. I could hardly read anymore my concentration so was terribly affected. It’s all ok now but I still don’t read like I used to - my nose was never out of a book!
I am the same. My concentration and memory is horrible. I have all kinds of lists and reminders for just basic stuff. It's really affecting my day to day life. Also struggling to find my words sometimes to the point of giving me social anxiety.
I still have the finding the word problem or I say a word that is very close in spelling but completely wrong!! I just laugh about it and plenty of people admit to it I find. You are right that you are encouraged to trust the medics to know and it’s a shock to discover this is not always the case. But if you have the condition you are in fact the expert, not them. In fact a good one makes efforts to learn from you to inform their practice.
Very true, I believe I am dealing with depression right now and loads of anxiety over anything. I almost gave up trying to find an answer but thankfully I found this forum and got the energy for another "push"
I'm a little confused as the photo you have given us doesn't actually offer any Graves specific positive antibody blood test results.
Graves and Hashimoto's are both autoimmune thyroid diseases and both initially present in the same way which is with hyperthyroid symptoms :
Graves symptoms are continuous and anti thyroid drugs, like Carbimazole are prescribed to block your own thyroid production.
Hashimoto's symptoms are transient and can " swing hyper " and then, over a period of many years, with every swing your thyroid becomes more damaged and less productive, requiring you to supplement with Levothyroxine.
The Graves specific antibodies are generally referred to as TSI or TR ab - roughly translated as either a stimulating or a blocking antibody - and maybe you can look back to see if you have any medical evidence of this diagnosis from some years ago.
Ultimately we need to have a current full thyroid blood test as already suggested so we can help give you more detailed help and information on anything that looks untoward.
Many thanks for your reply and for the warm welcome Sadly I don't have the other papers where it was diagnosed as Graves . I will call the specialist and try to get copies of all my past blood tests to confirm this and also have them for my record if I decide to go private. I will get the private blood test with Blue Horizon as suggested and will post updated results and maybe get a clearer picture.
She may also have Atropic autoimmune thyroiditis which is neither of the two with hypo/hyper swings but if the Endo diagnosed Graves it is more likely to be Graves - I know they do get it wrong sometimes.
Oh, I don't think the lady mentions a goitre but remember her being diagnosed with Hashimoto's and experiencing the temporary swings that this AI disease can cause.
After childbirth diagnosed Graves, and put on Carbimazole and now on no AT drug and no thyroid hormone replacement, and reads to me as dealing with symptoms of hypothyroid.
No goitre and as of 2017 latest diagnostic has been Graves. Now really looking forward to next week when I'll have my results from the private testing I am doing. Will post them and hopefully get a better insight of what's been happening
They are very good articles I still find all the antibodies tough going but Dr Smith does the best job of explaining them that I’ve discovered. I find the dioadinases hard to assimilate but keep rereading to try and get it clearer again Dr Tania Smith does a good set of articles about them. She has written so much helpful stuff on there 🎩 🎩 off to her!
Just got my results back. The only doctors comments included in the result were that I have both antibodies high like seen in Hashimoto and Graves. Please see below. As I mentioned initially my diagnostic was Hashimoto(10 years ago) but then after giving birth(2017) I was told it is now Graves so I am a bit confused. Also my other values are within range but could I still develop the symptoms mentioned in my earlier post?I am looking at the list I have received from Louise and maybe book a private consultation as well. Also was thinking maybe an ultrasound would help. I don't really know what my next step should be. Please let me know what you think, really appreciate it.
In order for the Admins to see these latest results it's in your best interests to start a new post with the results and ranges plus a brief recap of where you are in all this :
I'm just one self taught individual - and you will fair better starting a new post so everyone has the option of seeing these results - not just me -
I now see you have sent all this to another person, like me, and whilst we might be flattered by your trust in just us, it's in your best interests that the Admin take a look, as they know more than than us.
Admins very rarely " look back " the volume of people looking for help being what it is :
Admins don't scroll through rolls of conversation loitering with the intent of adding something else : they generally do the ' kick off ' and we run around fielding the fallout if we think we have something else to offer :
Makes perfectly sense pennyannie. That would have been easier for me as well. Will do that. Found more information here in 1 week than in 10 years of dealing with this. Many thanks x
I have seen this on another post and emailed yesterday and received the list straight away. Life saver!! I'll wait for my results next week and then I'll try and look for someone from that list
I had the same symptoms and this happened to me after a miscarriage of identical twins I was undiagnosed with Graves’ disease hence why I lost the twins please don’t worry these symptoms will subside u need to ask you doctor to refer you urgently to endocrinology in the mean time you can Ask you go to do all these tests such as tpo anitobidies trab t4 t3 tsh vitamin d
I am so sorry to hear this. Just received my test results that I have done privately and will post them to see what other members think. I have an upcoming appointment with the specialist in September. Have your symptoms subsided?xx
My symptoms did go away it took a little time I had to take a tablets carbimazole along with a tablet to control my fast heart rate I thought I was never going to get better but I did x
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