Hi everyone! I am new here and I have recently been having a lot of problems and wanted to see if anyone has experienced anything similar.
Sorry my story is long and I'll try keep it brief.. At 19 I was diagnosed with Graves disease/hyperthyroidism. Can't remember my exact results but I was reading at 94 which shocked my doctor.
After taking medication and it failing to keep my level normal I was given radio iodine to shrink my thyroid gland however it sent me into hypothyroidism straight away.
Over the past 10 years I have battled with extreme fatigue on and off and when having my levels checked the bloods were normal and told everything was ok so puzzled I just carried on.
I have had massive mental health swings between low mood/depression or periods of anxiety and have been on and off anti depressants throughout the past 10 years.
For the past few months I am so tired all the time no matter how much sleep I get and gaining weight I can't loose despite me being active. I have lost my energy and zest for life. I have also started tracking my cycles using a basal body temp thermometer and I'm consistently getting very low temperatures associated those who have hypothyroidism. It is also obvious I'm not ovulating.. I don't use any hormonal birth control.
I therefore got onto a doctor who put me through for tests (T4 & T3) and they came back slightly over. I gave him all my symptoms and he just disregarded them and started talking about my mood which I said was not great given my symptoms. He put me through for further tests so then "we know there is nothing physically wrong".. Clearly referring to my history of anxiety thinking I'm being dramatic.
My tests for kidney, liver, anemia, gluten sensitivity etc came back clear. During this time I had been doing my own research and read up on Hashimotos. I spoke to a nurse practitioner who was great and felt I did fit the symptoms but that I needed a doctor to call me to order the test.
My doctor rang me up dismissing the Hashimotos suspicion as a) my gluten test came back fine and B) is expecting a negative result as I started with Graves disease. He has reluctantly ordered the test and made no other suggestions as to why I feel so awful. I have continued to research this and read iodine can make hashimotos worse... Which I took a massive radioactive dose of.
I've not had my test yet but I first wanted to know if anyone has had a similar story? Specifically if you had hyperthyroidism and was later diagnosed with Hashimotos.
I also wanted to know even if the test comes back negative can I push to be referred to a specialist? as whilst my tests are clear I have all the symptoms including low BBT and no ovulation.
I feel like it's been a long slog of a battle and it would be nice to actually feel normal for the first time in 10 years.
Thankyou so much for reading this and any advice would be really appreciated.
Olivia
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Important to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking, if any?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Low vitamin levels are extremely common, especially after Graves
Strictly gluten free diet frequently helps or is essential
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 thyroid antibodies or all relevant vitamins
Good Afternoon SlowDragon. Thank you for your reply and I apologise for my delay I was obtaining my blood test results this morning.
I am currently taking 100 micrograms of Levothyroxine daily and this dose has been the same for the 9/8 years I have been on it. I have also been on mainly the same brand however the brand did appear to change a few months ago but back to the usual one. Could this have any effect?
I am not currently taking any vitamin supplements.Thanks to yours and others helpful advice I am going to request a full Vitamin test with (another) Doctor at my surgery. I am also having a full hormone test as well just to rule anything out there.
My diet is very varied. I eat well but also do not deprive myself of things such as chocolate on occasion. On days I feel worse I will often find myself hunting for sugar as I feel so tired.
I have been caffeine free since June and also only drink alcohol occassionally and when I do it is one or two drinks. I am looking into taking Gluten out of my diet and will do this soon but I dont want to make tons of changes at once like you suggested.
Looking at my blood test results I was tested for " Free T4+FT3+TSH" Results were as follows:
Serum free T4 level: 20.2 pmol/L- Above Range
Serum TSH level: 0.15 mu/L- Below Range
Serum Free triiodothyronine level- 4.8 pmol/L
I have just copied this from the test so apologies if I have have overdone it I cannot see a T3 result though? The Doctor said I had gone the other way when I called him after my test.
I also had a Ferritin test which came back as normal at 47 ug/L.
Thank you for the blood test tips that is really helpful. I usually have them early but will take my dose prior to having them. I do tend to eat afterwards.
Your Ft3 is not above range, so you are not over medicated
Once you add ranges we can see how well you convert Ft4 to Ft3
Had you taken levothyroxine before this test?
Bloods should always be tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Extremely important to regularly retest vitamin D, folate, ferritin and B12
Very common for these to be too low, unless supplementing virtually continuously. Improving low vitamin levels helps improve conversion of Ft4 to Ft3
I would have taken Levothyroxine before the appointment as it is the first thing I do when I wake up. I will not be doing this for future tests. Would it be worth me getting re testing applying this advice?
I will definitely push for the vitamin testing to be done too and will have this done regularly.
Frequently patients are left under medicated or vitamin levels are too low, or conversion of levothyroxine (Ft4) into Ft3 is too low
Common after. RAI to need the addition of small doses of T3 alongside levothyroxine
First step is to get FULL Thyroid and vitamin testing
Getting vitamin levels optimal can significantly improve symptoms and improve conversion so is always first step
Gluten free diet often helps too
Only making one change at a time is important otherwise don’t know what is helpful and what isn’t
What’s your diet like generally?
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 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
please email Dionne at
tukadmin@thyroiduk.org
Dionne also has list of recommended thyroid specialist endocrinologists
But ALWAYS get full testing BEFORE considering booking an appointment
Professor Toft recent article saying, T3 may be necessary for many, especially after RAI
I am so sorry to hear that you are so unwell. Can I ask, did you get printed out copies of your blood test results? Very often doctors will say everything is normal but they don’t interpret the tests correctly. Can you post copies of your results on the forum here so that people can comment?
Thank you Lisabax that is really helpful and something I will keep in mind moving forward. I went and requested my blood results this morning from my Doctors.
Looking at my blood test results I was tested for " Free T4+FT3+TSH" Results were as follows:
Serum free T4 level: 20.2 pmol/L- Above Range
Serum TSH level: 0.15 mu/L- Below Range
Serum Free triiodothyronine level- 4.8 pmol/L
I have just copied this from the test so apologies if I have have overdone it I cannot see a T3 result though unless thats one of the tests with a different name.
I spent 11 years struggling and my GP telling me my blood results were ‘normal’. The problem is that the NHS set the ranges too wide. I went to see a private only Endocrinologist eventually. He explained that a TSH should be lower than 2.5 and aim for 1.00. When I checked my results on my Patient Access, my results had never been below 4.00 in 11 years and that’s why I’d been struggling. We added T3 to my T4 Levothyroxine medicine. I now do not struggle anymore and my TSH is hovering around 1.00 and T4 and T3 are now optimal. It’s worth getting your B12, D, folate and ferritin checked also as these need to be optimal too for good conversion of T4 Levothyroxine to active T3.
Hi McPammy. Thank you for your reply that is reaaaally helpful
So looking at my last blood test my TSH level 0.15mu/L and the test actually marks it as under range. I am going to call the doctor and insist on vitamins to be added to my blood test next week. I had Ferritin checked and this all appeared fine.
I have also requested my full medical history as I am intrigued to know what my levels have been all this time too.
I am pleased to hear your levels are now good As levothyroxine is T4 it might be I too need more T3.
My doctor rang me up dismissing the Hashimotos suspicion as a) my gluten test came back fine and B) is expecting a negative result as I started with Graves disease.
a) You do not have to have Coeliac Disease to have Hashi's. Some Hashi's people also have Coeliac Disease, but not all of them. So, you get some sort of idea of the level of thyroid knowledge you're dealing with there! lol
b) But, did you really have Grave's? Did you have positive TRAB or TSI tests? A lot of doctors confuse Hashis with Grave's and don't do the right tests.
It is, of course, possible to have both at the same time, although rare. But, if I've understood your story correctly, your thyroid has been destroyed by RAI. In which case, you would no-longer have Hashi's. Because Hashi's cannot exist without a functioning thyroid - as far as I know. You may have had Hashi's, which could possibly have caused some long-lasting problems such as poor conversion, but you no-longer have Hashi's if you no-longer have a functioning thyroid.
You are hypo, and under-medicated, by the sound of it. You could have low nutrients, and adrenal problems. But, I very much doubt you have Hashi's - the symptoms of which, of course, are the symptoms of low thyroid. So, not surprising they sound the same.
Thank you greygoose your reply is really helpful I too thought his comment about Gluten was ridiculous lol My sister in law has an autoimmune disease she regulates with gluten but is not Coeliac. Im going to demand he does not call me next time lol.
As last week was the first time I had been told I had Graves disease I have requested my full medical history today. It all feels like a massive mess. I know I would have done the research back then but instead I was told "Your overactive" and then got put through for radio iodine always indicating my Thyroid was the problem. As I was quite young my mother attended all my appointments and even she was flabbergasted when I mentioned Graves last week.
From your point about having both that really does make sense thank you. I doubt my Hashis test will confirm positive.
I can honestly say putting this post on here has helped me more than any doctor ever has and helped me gain such a great understanding.
Well, I'm wih Graves Disease diagnosed at age 56 and had and RAI thyroid ablation two years later in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.
RAI is a slow burn but ultimately your thyroid gland will be burnt out and disabled in situ .
You will still have Graves Disease as it's an auto immune disease and your thyroid was the victim in all this, not the cause, as the cause is your immune system attacking your body.
Graves does tend to be a poorly understood and badly treated auto immune disease and is said to be stress and anxiety driven, so now, even though your thyroid is disabled you may still have lingering symptoms though not as acute as when first diagnosed.
Your body has been through the extremes of metabolism from running very fast and overactive to then, literally overnight, plummeted into the depths of hypothyroidism, the opposite end of the spectrum.
Primary hypothyroidism caused by RAI is known to be more difficult to treat:
RAI is known to " trash " vitamins and minerals :
No thyroid hormone replacement works effectively is vitamins and minerals, your core strength, are not maintained at optimal levels :
It is essential that you are dosed and monitored on T3 and T4 blood test results and not a TSH level though in primary care, generally, all they seem to test is a TSH :
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 : T3 is said to be 3/4 times more powerful than T4 - Levothyroxine and the body runs on T3 the active thyroid hormone, with the average person using about 50 T3 daily just to function.
The body needs to be able to convert the T4 into T3 for full body metabolism and this process can be impaired by other heath issues and low ferritin, folate, B12 and vitamin D :
There are options of obtaining T3 - Liothyronine from the NHS but you'll need to be referred to an endocrinologist to consider your suitablity for a trial.
There is also the option of Natural Desiccated Thyroid which contains both T3 and T4 thyroid hormone but this needs to be on a named patient only NHS prescription and it seems most doctors are reluctant to apply for funding for this full spectrum thyroid hormone replacement. NDT is pig thyroid dried and ground down into tablets referred to as grains and was used successfully for over 100 years prior to the advent of blood tests and ranges and the introduction of Levothyroxine.
Some people do fine on T4 alone ; some people need a combination of T3 / T4 : some people need T3 only : some people take NDT and some people add a little T3 or T4 to the fixed ratio of T3 and T4 found in NDT.
I became very ill about 8 years post RAI thyroid ablation and found myself on here looking for help and advice.
I failed in my request for NDT from my doctor in 2015 and the one and only endocrinologist I saw in over 10 years declined my request for a trial of T3 in early 2018.
I now self medicate and buy my own thyroid hormone replacement and am much improved.
There's a lot to read and understand and it may seem daunting, but you do need to become your own best advocate and if you can't get help through the NHS you may also need to consider DIY. I don't recommend this lightly, as initially, we all should like the support and help of the medical profession.
You may like to read up on the Elaine Moore Graves Disease Foundation website - this lady has Graves and went through RAI and finding no help with her continued symptoms started researching herself, and now with several books published and a website devoted to Graves sufferers world wide, offers a well rounded, well researched and respected platform.
Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism. Barry Durrant - Peatfield writes in an easy to understand, sometimes funny, insightful manner and we do need to know all that this amazing litle but very major gland does so we can try and compensate accordingly.
Thank you so much for your reply it is truly appreciated and its nice to speak with someone who has been through something similar to myself.
I have requested a full medical history as quite frankly I was shocked when I was told it was Graves last week. I know it was a long time ago but even my Mother who accompanied me to my appointments confirms we were never told it was Graves. After researching Graves I should have definitely been given more information on the possible side effects! Like you said the thyroid was made a victim.
l'm not sure how you feel but if I could go back I would not have agreed to RAI and I have read in places its used as its cheaper in the long run.
I always feel stressed and anxious about something and this just gets worse and worse as I get old so this could potentially be due to the Graves.
Sorry to hear you were not able to get the NDT that must have been very frustrating for you.
Looking at your response and others who have replied I am definitely going to a) get a vitamin test added to my blood test next week and b) Push to see a specialist regarding my T3 levels. In the long run I think I will look at self medication once I know a bit more about it and also planning to cut out gluten at some stage to monitor how I feel without it in my diet.
I am certainly looking forward to getting my medical history and see what was logged back when it all began.
Thank you for sharing these resources I spent a lot of time on Elaine Moore's website last night and have learnt so much!
Thanks again and I wish you all the best on your journey with this too.
No problem, just glad it made some sense and allows you to know you're not alone and there is support of this amazing forum.
We all have to start somewhere, and yes, I too deeply regret RAI - but I wasn't given an option and told at my very first endocrinology appointment for Carbimazole that I was to have RAI treatment the following year, and not knowing anything, and trusting the doctors knew best, was totally compliant and followed the orders.
To be honest it's so much less stressful, not going to see the doctor only to be told I'm ok and when I say I'm not, offered anti depressants.
I did inform my doctor and the one endocrinologist who refused me a trial of T3 that I was self medicating and did suggest I would make myself available for the yearly thyroid function test providing T3 and T4 were tested alongside theTSH.
I didn't hear anything back, though have noticed that now, 2 years later Levothyroxine has been dropped from my prescription, which now just lists eye drops, which I'm told I can't have more than 1 box a month, 30 single use ampules, so I have to top up myself up anyway, as most days I've 2 eyes and need drops more than once a day.
I'm now on NDT and doing ok, I'm lucky as my only health issues are thyroid/RAI so I haven't been back to the doctor for a good couple of years and feel so much better, it sounds crazy, but it's true.
I really wish I had found this forum sooner it is brilliant
I was very much like you I went with what the Doctors said regarding the RAI and put my trust in them. I found the whole experience quite isolating to be honest as I couldn't be around my family members, friends and pets for a while due to the radioactivity. I was told I might be underactive straight away or in 30 years but I went straight to underactive.
That really is ridiculous regarding the eye drops that must be so frustrating. I don't know if its just me but I feel like its taken seriously at all. I'm bring treated like a hypochondriac and if they see my mental health history all they want to do is talk about my mood.
Glad to hear your are doing ok on the NDT its really nice to hear such a positive outcome.
I have received my medical history today and Graves is mentioned several times around the point of my diagnosis. They ran a TPO test by the looks of it and it was measuring 275iu/ml [<50ml]. Only one doctor notes that Graves is auto immune and the underlying cause. the rest refer to Graves and Hyperthryoidism as the same thing! I was never told how I could make lifestyle changes to manage graves (or even that it was graves) which makes me quite mad.
Well a TPO antibody test is not specific for Graves :
As already stated the unique antibodies for Graves are referred to as TSI/TRab :
I've just read through this post again and seen your blood test results and they do show a T3 result - it is expressed with the wording triiodothyronine and in range at 4.8 and just around 43% through the range compared to your T4 just tipping over 100% :
So there is an obvious conversion problem which might be rectified by optimal vitamins and minerals, but ultimately after RAI thyroid ablation, it might be necessary to introduce T3 - Liothyronine alongside Levothyroxine medication.
In pimary care, generally doctors monitor and dose adjust on just a TSH reading and yes, a suppressed TSH as you have, would mean they would think you over medicated and suggest a dose reduction, when in fact the opposite is the reality.
It is known that in Graves Disease patients the TSH is an unreliable marker of anything, our feedback loop is broken, we haven't a thyroid, and the " quick look " TSH marker doesn't work for us. We need to be dosed and monitored on T3 and T4 blood test results with a view to maintaining both these vital hormones in the upper quadrants of their relevant ranges, and restoring a level of wellbeing acceptable to the patient.
The logical solution is to drop a little T4 and add in a little T3 thereby reducing the imbalance and you could ask for a referal to endocrinology for a trial of T3 .
But I must just add :- my trial of T3 was refused as the endo told me I was overmedicated and needed to reduce back down my Levothyroxine. Her reasoning was simply that as my TSH was suppressed at 0.01 and she took no account of my T3 being at just 40% through the range with a T4 just tipping over the top of the range.
I couldn't see any of the other tests so it might not even have been Graves at all, probably just assumed it was as I was overactive. I feel quite frustrated by this as something was not right and it could potentially be causing some of the problems I have had since. I can imagine going for the TRAB/TSI now would be of no use.
I have been looking through the list of Endocrinologists and found one nearby who has prescribed T3 in the past so sounds like they have an understanding of it which is good.
My vitamin levels are being tested next week so hopefully a re jig of my meds and addition of T3 may help. I have read a lot about cutting out on Gluten, Is this something you have tried?
I read that everybody's journey with Graves is different.
Looking back I was physically threatened and verbally abused by a man I took on as my assistant manager : I was in a state of total shock and guess what 4 months later I'm diagnosed with Graves Disease . Reading up in Elaine Moore's book she writes there is a higher incidence of dyslexia and left handedness in people with Graves. She also writes that Graves is stress and anxiety driven AI disease and can occur after a sudden shock to the system like a car accident or the unexpected death of a loved one.
So I think I fit this profile very well, with 3 out of 3 : and was also dealing with 3 close family deaths all within around the 6 years prior to my diagnosis.
So. I dont know either if I had the appropriate antibody tests, I too felt I needed to find the anwers to my situation but feel too hurt to even get my medical records.
As for antibodies, I'm not sure, I do eat clean and cook from fresh. It's something to try and if you notice any difference, and feel better not eating certain foods so be it.
From what I've read Graves antibodies wax and wane so another question mark rather than an answer, sorry.
When I take my yearly private blood test the basic thyroid antibodies are both low in range.
I experienced worse in NSH. Self research and study has become a never ending course for thyroid patients it seems. WHEN I ASKED FOR FT4 and FT3 at NSH Feltham Center I was really wondering who hired such doctors at NSH? Because The doctor asked me back and said “WHAT IS FT3and FT4? There is no such thing” you have mental issues? I can’t explain in words how I felt. I go through lots of disappointments about my treatment. ONE LADY GP talks very rude and speaks too short as if she is charging per second to talk to a patient? She does not turn her face towards me and never faces me while talking ? For my basic check up and tests it’s really another toll on my mental health to visit Feltham NSH. They close counter window on face of patient before closing time. I have lots of health issues replayed to my thyroid but UK NSH has no such policy to have full tests. I visited private doctor and ended up paying £250 but no check up and no diagnosis. Only 2 minute talk to continue my medicine. It’s my request to anyone if there is an endocrinologist who believe in correct diagnosis please guide me. NSH GPS are treating thyroid patients but patients don’t know if those GPs are Endocrinologist or not? They don’t even know what is FT3 and FT4?
Suggest you write a post of your own including recent blood tests
How much levothyroxine are you are currently taking
Always the same brand
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) diagnosed by raised 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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
They shouldn't have talked to you like that! Maybe it was a partly a problem with semantics, and they didn't take the time to clarify... did you tell them "FT3" or "free-T3"?
I explained it to the doctor What is FT3. Then only he said “ there is no such thing. It’s your own thinking. I told him I have been getting it checked since last six years but he told me There is nothing like that.
Yes I’m exactly like you. You are taking too much levothyroxine. I know it’s contrary to what others speak but I can’t let my TSH get belo 2.00 because I get so tired and weak and feel awful that I would think I have a bad case of the flu. Severe muscle aches,sweaty palms sick to my stomach and the whole nine yards. Some people don’t do well when they take too much levo and the start getting bad side effects. The TSH has always been the most truthful test in the past ten years with me. Below two I feel dreadful and above 3.50 I feel dreadful. I have been severely overmedicated with a TSH of 0.01 but my free t3 never got above 3.10. It wasn’t until I met an endocrinologist that takes thyroid meds herself explained to me that you can get very sick when you push your TSH down too far regardless of the other numbers. All I had to do was drop my dose from 100 to 88 mcg a day and get my TSH up and all was well.
Thank you for your reply that is really interesting and would also make sense given my current levels. Hope you don't mind me asking but did you also have Radio Iodine treatment? Not a problem if you don't wish to share
Yes I had hyperthyroidism and had an ablation in 2011. I would always feel really exhausted and tired and get really weak for the first few years I kept arguing with my doctors to increase my levothyroxine dose even when my TSH started going towards 1.00. I finally met an endocrinologist that had hypothyroidism and her mother had had an ablation. She looked at me and said do you realize your a little on the hyper side anytime you try pushing your tsh that low. I then told her I couldn’t be hyper because my other free t levels were only mid range and she said it doesn’t matter. She said TSH is the biggest indicator of status. What I have realized is that when you live with a tsh lower than 1 is that your body is like pushing on the gas pedal and the brake at the same time. Your bodies systems get over stimulated all the time and then when you sleep you stop going into deep sleep rhythms as well so you wake up feeling like you have never slept and you no longer get the restorative properties to the deep sleep. That’s when your body will start breaking down your muscles for energy making your muscles hurt very bad and get weak.
That's how it definitely feels for me right now. I get a full night's sleep and have to drag myself out of bed and I have no energy. I have no children yet and I'm dreading to think what I'd be like if I did. I'm pleased to hear you have managed to get yourself balanced that Is really positive. Thanks again for sharing your experience.
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I cannot see a T3 result though? The Doctor said I had gone the other way when I called him after my test.
I was told I had Graves, but TSH Receptor antibody tests just in. Was it Hashi's all along?
Symptoms but blood tests Normal?
Supplementing with iodine if on T3 ONLY and testing low for iodine
Can an excess of iron create restlessness? Graves.
Underactive Thyroid symptoms but "normal" blood tests.
