I have some new updates and would appreciate further feedback.
I retook my thyroid tests and the new results are here:
Tsh 0.5 (0.5-4.2 lab range). Tsh has been going down from 1.4 or so few months ago. Last result was 0.823.
Ft3 3.0 pg/ml (2.0-4.4 normal)
Ft4 1.37 ng/dl (0.8-2.7 normal)
Tsh receptor AB 1.51 IU/L Positive (less than 1 negative, 1 to 1.5 equivocal, 1.5 and above positive)
Anti tpo 0.3 iu/ml (negative under 5.6)
Vitamin D has gone down aggressively from 50 Ng/ml to 23 Ng/ml (with healthy range of 30-100)
Vitamin B12 is normal at 600.00 pg/ml with ranges of 187-883 as normal in this lab.
Potassium was 3.6mmol/l with range 3.5 to 5.3.
Magnesium was 2.0 mg/dl with range of 1.6 to 2.6.
In addition to earlier symptoms, I have developed more tremors, continuous muscle twitching across the body including facial twitching and weakness, palpitations, insomnia, burping and belching, hypereflexes, warm skin, intense muscle weakness and muscle damage/loss, mild nerve damage (diagnosed by Emg) and some throat issues such as swallowing issues and occasional choking with excess mucus, saliva, dry mouth, hoarse voice, dyspnoea, weight loss, dizziness, increased bowel movements, restlessness, increased anxiety and swelling in thyroid. Some of the symptoms such as cold intolerance have improved slightly.
The thyroid ultrasound has shown 3 small sub cm nodules with an heterogenous echotexture of thyroid suggestive of diffuse disease.
I have visited other doctors including neurologists and cardiologist but they are sending me back to endo as they believe that thyroid disturbance and graves can cause such symptoms, however, the endo believes that the numbers are still not that low to be treated despite the antibodies, ultrasound and borderline tsh and recommends waiting yet again despite the severity of symptoms, I have been almost bedridden with no energy and intense weakness and am not able to work or focus on family life.
Shall I go for a 2nd endocrinologist opinion or wait and watch? Is this subclinical hyperthyroidism considering positive graves antibodies or does it still look like subacute thyroiditis?
All suggestions welcome.
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Wanderingweasle
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because the fT4 and fT3 results are not at all high at the moment , it makes it difficult to know how to treat it .
Even if they did know for certain whether it was mild graves or sub acute thyroiditis , the only 'treatment' for hyperthyroidism is to reduce T4 and T3 levels with antithyroid drugs ... and on paper , yours don't need reducing (even though your symptoms certainly point to 'too much thyroid hormone' , your T4 and T3 results don't seem to agree with your symptoms).
if they gave someone with your T4/ T3 levels antithyroid drugs, they would risk you having too little T4/T3 and getting symptoms of hypothyroidism .
and there isn't a treatment for the antibodies.
The TRab result is not conclusive about what it going on with you .... there are 3 sorts of TRab Blocking and Stimulating (and Neural).
Stimulating TRab (which cause graves) are directly responsible for causing the thyroid to produce more T4/T3 .... but even though you do (just) have positive TRab .. they are not causing the thyroid to produce high levels T4/T3 .
So either you don't have enough of them at the moment to be having a very big effect , or the TRab you have are the other sort~ Blocking (or the third sort neural which don;t seem to do much) .
Bit out of my depth here , mainly just replying so you don't feel ignored lol,
I will tag PurpleNails for you as she has a much better handle on hyper issues / scan results than i do .
Thank you for the response. It is indeed a complicated situation, I have asked around and some people are in this situation with *subclinical hyperthyroidism*. Since its not that common, I'm unsure as to how it can be approached. Likely that my tsh may go even lower in next labs as it has been a pattern for the past 5-6 months and may finally end up moving the ft4 and ft3 high. The wait game is making it quite complicated for me as I'm quite symptomatic.
Just for the record, my TSH was 1.35 few months ago, then it moved to 0.83 and then now to 0.5, there has been a slight increase in ft3 and ft4 but nothing worth mentioning. The ultrasound has continued to show heterogenous texture of thyroid suggestive of diffuse disease along with a few small nodules.
I think you need a thyroid uptake scan. Ultra sounds can tell you the health of thyroid but not where the thyroid is or isn’t functioning.
Doctors look at thyroid function results to decide if the thyroid is working normally.
Do you have any historical thyroid levels showing what your normal FT4 & FT3 is typically at for you?
Yours currently levels show low TSH & below midrange FT4 & FT3. TSH can be unreliable for many reasons. It might show much lower FT4 & FT3 levels than your norm but might be higher than your normal.
That might have an autoimmune cause or another possibility is that 1 or more of your nodules detected are hyper functioning. This throws out hormone often FT3 rises disproportionately, from the over production. TSH drops in order to signal lower production. The thyroid produces less but the nodule functions autonomously so gradually the TSH continues dropping, FT3 rises and FT4 rises behind.
Autoimmune tends to cause unexpected, sudden fluctuations but nodules can be slow to alter.
As an example, I have a 5cm nodule, over 4 and a half years my FT4 went from mid range to over range & FT3 to top of range to nearing double. My TSH had been <0.01 during this time. This was missed / untreated & I wasn’t given treatment until frees were well over range.
Doctors do not look to treat until TSH is below range which often occurs first or FT4 / FT3 is above range.
I think because your levels are currently below mid range it difficult view as hyperthyroid but your symptom could tie in with it. (Symptoms can be very varied & appear for both hypo & hyper)
If your norm is low in range & this it an increase it could explain it.
I had some similar symptoms to you but had such an high appetite & low energy I gained weight. Losing weight might mean your nutrients are being affected too.
I had twitching round 1 eye & found magnesium help it greatly. Also an important co factor for vitamin D.
I was just like yourself, bedridden most days gp telling me I was menupausal 🤦♀️ but I knew different I honestly thought I was dying, I managed to get him to send me to a specialist who was an endocrinologist my results were.. 2 Short suppressed thyroid stimulating hormone, but with normal T3 level she finished of her report (which I never had access to until my son requested my records in 2020 )
Report to my gp:
This lady has 2 episodes of short suppressed thyroid stimulating hormone
With episodes of thyroiditis
Subclinical HYPERthyroidism
I recommend she has regularly thyroid function blood tests to keep an eye on her T3 level.
This never happened, but I was constantly complaining to my gp about my symptoms, again he blamed the menupause.
In 2018 I collapsed at home and we're taken to our surgery, I saw a new gp she immediately diagnosed an overactive thyroid later diagnosed with graves my antibodies were off the scale 🤦♀️
Lost my thyroid in 2019
So although your T3 /T4 are not showing high levels right now I would insist your gp tests your thyroid hormones regularly.
Thank you. I will be retesting again in a week or two following the protocol shared by senior members here and will also retest my vitamins and also pituitary to see if anything else may also be contributing. It's a wait game for me, I hope I'll be able push through a few more weeks.
Tg antibodies can be present in both Hashi's and Graves', and for a number of other things, too, but if they're very high, it's more likely to be due to Hashi's. Just another thing to take into consideration.
Tg antibodies, like TPO antibodies, can fluctuate a lot, so doesn't really matter when, nor how often, you test them. It's really a matter of luck finding them at their highest.
OK, so that doesn't change much. Your Antibodies are still saying Graves', but your TSH and thyroid hormones are still saying euthyroid. The only thing you can do is wait and see and keep testing.
Have you had your ferritin and folate tested? I can't see any results.
Yes both of those are OK, pretty good in fact although ferritin results can be affected by inflammation in the body.
Also you could get a full iron panel run. It's possible to have enough ferritin which is the storage form or iron and too little iron itself.
If you show your vit D results to your GP they should prescribe a loading dose of vit D. Once that is finished you will need to continuously supplement yourself.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the Better You range of mouth sprays that include K2. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
If you have seen many doctors and they are drawing a blank then histamine intolerance is linked to thyroid issues and can cause issues like you have. Your GP likely won't know much about it.
Thank you. I can't recall my iron numbers right now, but I did get the panel done and results were fine. I'll dig through the documents to cross check. My GP, neurologist and cardiologist have mentioned in their report that based on in clinic check, symptoms, multiple positive graves antibodies results and multiple ultrasounds over time pointing towards diffuse disease such as graves, I'm clinically hyperthyroid or more precisely subclinical hyperthyroid with symptoms and they believe that some of the neurological and heart related symptoms are more related to thyroid than anything else and are constantly referring me to the endo. The endocrinologist doesn't agree for now and would like retests to see how it goes.
In the interim, I'm taking the higher dose Vitamin D along with k2 and magnesium.
As jaydee says, inflammation can affect ferritin levels, so you should always get ferritin and CRP (inflammation marker) tested together to know if your level is the true level.
Be careful when being given a 'loading dose' of vit D by a doctor. They are notorious for not giving enough!
I'm afraid I don't know how to interpret unltrasound comments, but it sounds to me as if they're saying you have an autoimmune disease and the ultrasound should be repeated regularly.
Thank you. I did the high sensitivity Crp at the same time which came out good at 0.01 with ranges <1 as low risk, 1-3 average risk, above 3 high risk and above 10 acute inflammation.
Yes indeed, I have had bad experience with GPs in past wrt doses, they ended up giving me just 1k or 2k IU which did nothing at all.
I had a discussion with the GP about loading dose and we agreed on 5k IUs starting and it can be ramped up to 7.5k IU or so and then once levels are normal, we will bring it down to maintenance dose which is to be decided later. It will be taken along with K2 and magnesium for better absorbtion.
For the ultrasound, I was only told the above and doc briefly mentioned that it's looking like autoimmune thyroid disease similar to last ultrasound, quite possibly graves based on positive antibodies.
Well, I'm glad you got the vit D sorted with your GP!
Just one point, we don't take vit K2-MK7 and magnesium with vit D to help absorption. We take the magnesium because the two work together and the vit D won't do much without it. And we take the K2 because taking vit d increases absorption of calcium from food, and the K2 makes sure it goes into the teeth and bones, and doesn't build up in the soft tissues and arteries.
Just a minor update. I was referred for an uptake scan after multiple positive TRAB graves antibodies tests, some swelling, ultrasound showing damage and increased symptoms including some eye symptoms. The uptake scan has confirmed graves hyperthyroidism with increased uptake and swelling. It has been diagnosed as moderate graves hyperthyroidism, doctor has suggested treatment instead of further wait. Doctor has advised to trial small dose beta blocker (10mg to take as per the needs) and Carbimazole (2.5mg daily). Retest in 3-4 weeks to readjust the dose if needed.
These are your latest labs, right? When were they done? Because they are not showing any sign of hyper. In fact, they show more a thyroid that is struggling to survive. If you start taking antithyroid drugs with these results, you're going to go pretty hypo pretty quickly. I cannot see the logic in starting carbi with these results - unless you've had worse one's done in the meantime. But, leaning heavily on my experience of reading blood test results on here, these labs say to me a struggling thyroid with a sluggish pituitary, rather than Graves'. If it were me, I'd want to hold off on the carbi for a while longer until you see which way this is going and if thyroid hormone levels are really going to go hyper high.
These are the latest labs indeed. Done few weeks ago. We are expecting further suppressed tsh and changes in ft4 and ft3, I have a history of heart issues and those were also a consideration in considering the trial. I did have an MRI for an unrelated reason and pituitary visualised in it was unremarkable.
It's a confusing situation as there are multiple positive TSH receptor results now which according to the endo is a highly sensitive test, multiple ultrasounds with heterogeneous echotexture and increased size and an uptake scan with increased diffuse uptake in both glands along with enlargement of the gland.
I did take buggleweed though for cough and sleep issues and it may have skewed some of my tsh, ft3 and ft4 results as it's used for mild hyperthyroidism as well from what I've heard. But I am not sure how scientifically accurate it is. I took it for a few weeks, 2-3 times a week and I still had antibodies positive and borderline tsh before that.
I will consider taking a second opinion if I can and have also requested a retest including pituitary testing before starting the medication to ensure that nothing was skewing the older labs.
Well, antibodies and TSH aside, it's the actual thyroid hormones that affect how you feel. And yours are already on the low side. Carbi stops your thyroid producing hormone, so, as I said, you will go pretty hypo pretty quickly, and that's no fun!
Are your doctors telling you that your low TSH is going to have a negative effect on your heart? Because that's just not true. TSH has nothing to do with hearts. Hyper people have heart problems because of their high FT3, not because of their low TSH. So, don't start the carbi just on the basis of a low TSH.
As for the MRI, pituitary problems aren't always visible. What's more, the pituitary could be sluggish due to a hypothalamus problem.
I'm not saying you don't have Graves', you could well have. I'm saying that with those Free levels, taking carbi is not going to do you any favours. And, if it were me, I'd hold off until I see proof they're going to get higher.
greygoose pennyannie PurpleNails just to keep you in loop on the status of things. I got back a physical copy of the Thyroid Scan and Thyroid Lab's retest.
Thyroid Scan Summary: The Thyroid Scan shows a slightly enlarged Thyroid Gland with Diffuse increased uptake of the radiotracer in both lobes of the gland, the data is suggestive of moderate to severe Hyperthyroidism with Graves Disease as the likely cause based on the interpretation of the scan image. Kindly Correlate further with the TRAB Antibody results and Ultrasound evaluation of the Thyroid Gland.
Retest Results:
Tsh: 0.4 with 0.5-4.2 lab range
Ft3 3.9 pg/ml (2.0-4.2 normal)
Ft4 1.5 ng/dl (0.8-2.7 normal)
TRAB: 2.9 IU/L Positive (0-1 negative)
Doctor Notes
Dx: Graves Thyrotoxicosis Subclinical with some signs of TED in one Eye
So, in summary, we think that 2.5 Carbimazole every other day as a trial may be more suitable than 2.5 every day for now till retest. There has been an increase in ft3, but other numbers have not changed aggressively. TRAB (TSH Receptor antibodies) remains positive for graves and thyroid ultrasound correlates with the positive antibodies and thyroid scan by showing heterogenous texture and enlarged gland typically seen in Autoimmune Thyroiditis.
OK then - it reads your T3 has increased since the previous reading -so was this blood test result before you started the Propranolol as this tends to reduce T4 to T3 conversion ?
Your T3 and T4 are both in range though somewhat inverted - and would think taking an AT medication every day a better option - could you take 1.25 mcg every day with the help of a pill cutter ?
I am highly symptomatic for months, clinical evaluation by the endocrinologist was one of the reasons behind trial of medication. I have some muscle loss and weakness, tremors, twitching, high body temperature, warm and thin skin, some eye issues, increased bowel movements, fatigue, palpitations and more. I am quite sensitive and my immune system wasn't very strong to start with. The doctor said that he has seen quite a few symptomatic subclinical graves hyperthyroidism cases and with graves symptoms and severity varies, so it's not as rare as I thought. He is hoping that low dose if monitored closely may help some of the symptoms along with a beta blocker, better diet and supplementation of vitamins etc. Also if we are able to bring down antibodies by a bit, then early remission is another possibility.
Unfortunately no time off, had to work throughout the year and still working through it all. Hoping that new year will bring some relief and I'll be able to resume normal life with friends and family and also focus on work. Without a diagnosis, it was difficult to explain my case to anyone at work or even home. Hoping that the meds start to take their effect in the coming weeks and I'll be on a journey of recovery. I was misdiagnosed with totally unrelated diseases and was put on wrong medication for those as well during the diagnostic journey as my labs were not that out of range. Only when a doctor decided to test tsh receptor antibodies, he found out that they were positive and we saw further damage in ultrasound and then uptake scan more or less confirmed graves and hyperthyroidism. I never thought that subclinical hyperthyroidism or borderline numbers and graves could cause any symptoms but turns out I was wrong, graves is under researched and not very well understood, it can cause a lot of issues. I really had a terrible year and it took a toll on my personal relationships and professional life. I went into a state of depression worried about unknown disease and thought that I'm going crazy as doctors kept sending me back with anxiety meds.
At least now I can rest easy knowing that I have some diagnosis and doctor is kind enough to trial low dose carbimazole for my improvement.
As I understand things you have been found to have thyroid nodules and have a positive antibody reading for Graves - which is an Auto Immune Disease for which there is no cure and something has triggered your immune system to turn and attack your body, rather than defend it.
Graves is said to be life threatening if not treated - with the treatment being an Anti Thyroid drug - either Carbimazole or Propylthiouracil ( PTU ) -
This simply puts you into a holding position, by semi-blocking your own new daily thyroid hormone production, while we wait for your immune system to calm down and for your T3 and T4 readings to fall back down into range, and hopefully your symptoms relieved.
However your T3 and T4 are not over range - nor you TSH suppressed -
Looking back I see there has been a thyroid scan and you have had stomach issues -
Thanks for the detailed comment. As far as symptoms are concerned, my body temperate is higher with warm, thin and moist skin along with heat intolerance, I suffer from palpitations, tremors, twitching and have developed hypereflexes along with increased nervousness, I have lost some weight and have some muscle loss and weakness, I have developed fatigue and increased anxiety as well. From stomach side there is increased bowel movement, indigestion and some burping and belching. I am also having sleep issues/insomnia and techycardia and BP increase has also occurred.
The uptake scan mentioned moderate hyperthyroidism and graves with increased diffuse uptake in both lobes and enlargement. Ultrasound mentioned heterogeneous texture, some enlargement and tiny nodules. Tsh receptor antibodies have come out positive twice.
I have tested vitamins and electrolytes multiple times throughout the year and the results were satisfactory. So I'm really not sure what else if not thyroid issues are causing it.
One point to note though is that as I mentioned above, I did take buggleweed for a few weeks, can that be skewing my labs?
Ok - so I recognise some of these symptoms from when I was diagnosed Graves back in 2004 :
Your T3 and T4 readings are inverted as we usually see and higher T4 to T3 - maybe this is just the start of your journey with Graves - are your eyes upsetting you at all - dry, watery, gritty, any eye pain or protrusion, or the feeling there's a draught in on eye ?
With Graves at any one time you can have either blocking or stimulating antibodies controlling your thyroid function as these 2 extremes of symptoms vie for control of your thyroid - and these can cancel each other out leaving you feeling relatively ' normal ' for you :
I referenced in Elaine Moore as she was diagnosed at the turn of the century and finding no help nor understanding with her continued ill health after mainstream medical treatment - RAI thyroid ablation - started researching Graves herself and now a leading expert in this field with several published books and a Stateside website and forum - helping people World wide - with their health issues.
Elaine has a section within her website with holistic and alternative treatment options wherein I found bugleweed, amongst other things mentioned.
It was all a bit too late for me however as I had already had RAI thyroid ablation back in 2004 becoming extremely unwell in around 2014 which was when I started my own research purchased Elaine's first book and fell into this forum researching low ferritin.
My eyes have indeed have been very dry and had some pressure and pain and I had to use eye drops regularly in recent weeks. Moreover there Is some lid lag in one of the eyes. I have been told by the endocrinologist that it may be just the start of graves.
Ok - yes - whatever lotions, potions or eye drops you use to ease the discomfort -
please ensure all products are Preservative Free - even those prescribed by the NHS :
You may well need to see a specialist in this field - I understnd there are now specialist clinics generally attached to large teaching hospitals, throughout the country, where an endocrinologist and an eye specialist in Graves /Thyroid Eye Disease work together with the patient to find the most appropriate treatment -
If you contact the Thyroid Eye Disease Charity - they can signpost you to your nearest outlier clinic - tedct.org.uk
Thank you so much. I have been advised to take selenium as well. If its early stage graves, I'm happy that it has been identified early. I'll just wait for a retest and if the results move a bit more, I'll start medication trial
Ok then - rest up as best you can - everyone's journey with Graves tends to be unique to them and why it's so poorly understood with no two people presenting in the same way -
though stress and anxiety tend to be common triggers .
I didn't know any different in 2004 and very unwell which I now realise were symptoms of hypothyroidism which I had lived with forever and when ever seen by a doctor only ever offered anti depressants which led me to believe it was all my fault.
Three months prior to diagnosis I was physically threatened and verbally abused by a man I employed as my assistant manager and I was going through a grievance procedure with a company who were totally lacking and I think this must have simply catapulted my thyroid into giving a reading of some description that gave me a diagnosis.
My case is most likely stress induced as well. I had an extremely stressful year and health issues started to pile up shortly afterwards. I was being pushed to take antidepressants as well and was told that thyroid is fine. Only recently the ultrasound, antibodies and uptake scan started pointing towards issues. I am not sure if the symptoms are all related to thyroid and graves or a mix of thyroid and some deficiencies, but hopefully better times will come.
Well the thyroid is a major gland and synchronises all your bodily functions from your physical through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism.
When your metabolism is running too fast as in hyper type symptoms or too slow as in hypo type symptoms your body will struggle to extract key nutrients through your food no matter how well and clean you eat -
this in turn can lead to low core strength vitamins and minerals - especially those of ferritin, folate, B12 and vitamin D - and if these are not maintained at optimal levels and start nose diving this will compromise your health issues further - so best to get these run and we can advise where in the ranges you are likely to feel at your best to support you through this phase of ill health.
If your heart is involved in this first phase of Graves a beta blocker can be prescribed - Propranolol is generally suggested as this is known to reduce the rate of conversion from T4 into T3 - which considering your readings are T3 dominant -
I got prescribed propranolol 10mg to use as per needs. The doctor did tell me that he has seen several cases of subclinical hyperthyroidism with graves being symptomatic and research on graves is quite limited in general. I'm really out of answers as aside from my thyroid scan and some labs, everything else has been coming out rather normal. Perhaps labs are skewed because of my buggleweed use or they are slow to catch up. I really hope my health mystery will be solved by this and I'll start my recovery as my personal, professional and family life has been really affected.
Well Elaine mentions bugleweed amongst other things on her website section detailing holistic and more alternative treatment options - maybe take a look - and you could ask again on Elaine's forum - or email Elaine personally as she will answer if able to - though know she is recovering from cancer treatment.
From what I've learnt on here - when stopping Propranolol - I think you need to slowly taper off the dose - when and if this happens - ask this question again - I never had any heart issues - and felt very well on the Carbimazole and just wish I could have stayed on it - but told my very first hospital endo appointment it was too dangerous to stay on long term and that I was due RAI ablation the following year !!!
Thank you for your detailed responses. I really appreciate it. I'm hoping that after a very rough year, October will be a positive new start for me and I can hopefully start the recovery process. I will surely check the forum that you have mentioned
Ok then - keep us in the loop - there is likely a genetic predisposition to Graves with someone a generation away from you with a thyroid health issue and this stress you acknowledge has likely triggered your diagnosis.
I think my father who was medically discharged towards the end of WW2 had Graves - I was born in 1947 - totally different birth and childhood to my elder brother - I am left handed, dyslexic ( undiagnosed ) and grew up with bouts of urticaria and alopecia, grossly over weight, wearing boys shoes and blazers at school - and so it went on - so stressed and anxious were my ' normal ' set point.
Now remembering my mother saying what a good baby I was as I never cried or bothered her, sat on the floor, didn't crawl around - took ages to walk or talk and wasn't inquisitive and didn't get into any ' mischief ' and not like my Big Brother !!
Graves can burn itself out, given enough time if able to be tolerated - there are people on this forum who were diagnosed many years ago and now when they find themselves with life stressors and sense ' it ' happening again - simply reset themselves with a short course of an AT drug to help them through whatever has upset them.
I think this happened to my father as he was tolerated - but in later life he mellowed and became a big soft Teddy Bear but left mildly hypothyroid which didn't bother him and remembering him saying " Well - What do doctors know anyway " !!
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Can I discontinue Levothyroxine 50mg ? I started getting thyroid problems after taking antidepressants and mood stabilizers. Not taking now.
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