Good morning all,
I have been recently diagnosed with Hyperthyroidism (Graves disease) and attached is the result.
Do I need second medical opinion?
Should I request further tests? If so, what tests?
Do I need change of diet? If so, what kind of diet?
I'm confused, as I don't even know the questions to ask the consultant.
Just going to link to your post from yesterday so that others know the advice you’ve had already (cos people will ask you the same questions if they aren’t aware and you don’t need that 🙂).
healthunlocked.com/thyroidu...
And going to tag pennyannie for a looksie at that TRAB result. 🙂
Hey there again :
So - in May the Graves antibody reading - TSH Receptor AB - antibody read is 5.70 -
but there is no cut off number - but usually it is around 1.50 -
so think you can take this as the proof of diagnosis we were asking for yesterday and that you have Graves Disease.
Not sure what else I can add - but good to know we have had the right AB run and a diagnosis made.
Your levels of T3 and T4 are rising invertedly as explained yesterday -
and I would think you should be on an Anti Thyroid drug - such as Carbimazole or Propylthiouracil ( PTU ) and your progress monitored closely.
All the Anti Thyroid drug does is ' buy you time ' while we wait for your immune system to calm down again and stop attacking your body - rather than defend it - as is the normal function of the human body's immune system.
The anti thyroid will semi-block your T3 and T4 thyroid hormones rising any higher and hopefully relieve these horrible symptoms and pressure within that you may well be feeling- while we wait for your immune system to calm down again ;
Once on the AT drug - blood tests are repeated every 6-8 weeks and as your T3 and T4 fall back down into ' normal levels and not inverted ' the AT drug is reduced down accordingly - with a view to keeping both T3 and T4 in range at around 50% through their ranges.
as detailed yesterday - the NHS allocate a treatment window with the AT drug and hopefully in this time frame your immune system calms down and your thyroid reset itself without the need for any drugs.
Maybe get tested for celiac and pernicious anemia as these are also Auto Immune diseases that can ' run ' alongside Graves - if with stomach issues and bloating this is often caused by gluten intolerance -but get tested while still eating your chosen food stuffs.
It is recommended to eat healthily, cook from scratch and do not consume processed foods.
Most important to keep your core strength vitamins and minerals optimal and suggest you also get your ferritin, folate, B12 and vitamin D blood tests run and we can advise where these need to be - as being in a NHS range somewhere - is not optimal - and we need optimal levels to help give us extra support when with a phase of ill health.
I can't think of much else to add this morning -
The TRab doesn’t have lab range but that is likely a high result by most ranges I’ve seen being 1 or 2 being the upper limit. That is accepted as confirmation of Graves.
I’d imaging drs will recommend starting carbimazole, 5mg or 10mg starting dose should be sufficient to lower FT3. Retesting 6 weekly until stable.
Drs will need to monitor for low FT3 & how you respond to carbimazole, both FT4 & FT3 need to be mid range. TSH can take longer to recover. What you don’t want is a higher dose of carbimazole and for doctors to go by lowering levels so theTSH numbers are to their liking.
Testing nutrient and ensuring they are good might help related symptoms, also gluten allergy screen. Many with thyroid autoimmune benefit from strictly gluten free. An intolerance won’t show on test, so worth trialing even if test negative.
Find ways to relax and avoid stress….. if only we all could.
I find most doctors tend not to listen to symptoms properly and advise about the disease. But will try to appear to when explaining treatment. If your results are in range drs say symtoms are not to do diagnosis. Sometimes doctors hand out patient leaflets saying everything explained here.
Everyone experiences are different some find doctors more helpful, so I depends who you get.
Well, quite frankly it doesn't look or sound like Graves' to me. Yes, I know, I have Hashi's so am not an 'expert' on Graves'. But from years of reading other peoples' blood test results it just doesn't seem the right diagnosis.
It looks like Hashi's for several reasons: The FT3 is high but the FT4 isn't. The high FT3 came on suddenly. TRAB can be high in Hashi's just as TPOab can be high in Graves'.
If I were you, I wouldn't come to any conclusions until you've had both TPOab and TgAb tested for Hashi's. And I wouldn't take any medication until you've waited a while to see if the FT3 is going to come down by itself. It's not that high, anyway.
To quote Elaine Moore -
Blocking TSH Receptor antibodies block both TSH and TSI from reacting with the receptors.
This offers protection in patients with Graves Disease and contributes to hypothyroidism in patients with Auto Immune atrophic thyroiditis.
I think this was true in my own case and likely applies to this post.
Possibly. But until all the antibodies have been tested I don't think we can draw any conclusions.
Well - yes of course and there is generally some overlap in antibody activity anyway when the thyroid is under attack but Graves treatment will take precedence as it is ' seen ' as life threatening.
We did have mention of TPO antibodies in this O/P first question yesterday but what was shared didn't make much sense - if my memory serves me right.
Yes, I saw that. Looked more like the range for TgAB than a result for TPOab. So, that needs clarifying. But if the OP's TPOab really was more than 1000, then I would think she really does have Hashi's rather than Graves'.
As I understand things these blood test inconsistencies were found during routine blood tests for embryo transfer -
The O/P had none of the typical symptoms associated with either Graves or Hashimoto's and as far as I'm aware had a very bad headache last January - and developed some arm twitches and eye issues.
It's not unheard of for Hashi's people to have out of kilter results but - to their mind - no symptoms.
It was less than 1000.
OK, but that's not much help because we need to know how much less. The upper limit for TPOab is usually around 38, I've never seen it go that high. Whereas, usually the upper limit for TgAB is 1000 (I think!). So, we need precise numbers to know what they're telling us. Things like 'in range', 'under this' or 'over that' tells us nothing.
Do I request the TPOab and TgAb tests from the GP or consultant?
A GP can order TPOab, but labs tend to refuse to test TgAB if the TPOab is negative - which is totally rediculous, of course, because the TPOab can be negative but the TgAB sky-high. But that's the state of lab testing at the present time. But, you could try asking your endo because he might have more clout. Failing that, you could get it done with one of the private companies. 
I agree with your take on the situation. You've taught me well greygoose! I believe I have Central Hypothyroidism. A relative has just found herself in more or less the same situation as psalm18. I have advised her to post on the forum herself.
I believe she may have pituitary/ hypothalamus issues, as she is related to me. It is entirely possible she could have Ord's/ Hashi's/under active thyroid, due , also to her genetics. Her genetics are also likely to have "signalling issues." I believe I definately have.
I don't have positive TPOab or TgAB. I haven't had TRAB tested. She likely has genetics for an under active thyroid and being unable to recycle B12 from a possible CBS mutation. I have a double mutation for CBS. If her thyroid genetics bear a similarity to mine, she would be genetically wired to have Trab, normally associated with Graves Hyperthyroid.
I have tracked my thyroid for a couple of years now, and despite my genetics showing that I am predisposed to TRABs , all readings are for an underactive thyroid.
I will ask her to follow psalm18's post.
It is possible to have Hashi's without high antibodies.
I was diagnosed during and after my last pregnancy. It took months to find a doctor to help me but I found one. He put me on methomazole. It helped and jumpstarted and fixed my hyperthyroid.aka autoimmune hyperthyroidism aka Graves Disease. My thyroid was great after a year on methimazole. I didn’t have another thyroid problem for years till another high stress point after a car accident and it switched to autoimmune hypothyroidism. Hashimotos which now I am on levothyroxine and hydroxycloroquine. Hyperthyroidism is very dangerous. See if your doctor would be open to consider methimazole which corrected my hyperthyroidism. Good luck
Thank you
Were there any side effects to the medicines ?
Just for reference Methimazole is an Anti Thyroid drug - just as Carbimazole and PTU are - which are the brands used in the UK.
My doctor 20 years ago based the methimazole on a study he followed in the UK. It fixed my Graves’ disease then 6 years later I got hypothyroidism Hashimotos but current doctors won’t try methimazole. Said only works on hyperthyroidism
Can you explain what you'd hope methimazole or carbimazole to do to help?
They both reduce the production of thyroid hormone. If you are hypothyroid, they would make you more hypothyroid. That is why I am not understanding why you would ask a doctor to try either for Hashimoto's.
Well as far as I'm aware it is an Anti Thyroid drug - and does what it says - block ones own daily natural thyroid hormone production - but yes - generally speaking we do not treat Hashimoto's with an AT drug as the ' hyper ' phase is transient and the T3 and T4 fall back down into range themselves.
Sorry about the car accident - interesting that second time around you end up with Hashimoto's !!
I guess using an AT drug for any length of time will down regulate any persons thyroid function -
but then living with Hashimoto's can also be very disabling and guess the AT drug is used to try and keep you on an even keel rather than suffer the ' swings ' in thyroid hormones being tolerated - ultimately you'll need thyroid hormone replacement as your thyroid can't regain function and pretty much a lost cause anyway - so I get that.
I think I like your doctor and old fashioned thinking - unfortunately I knew nothing when diagnosed Graves 2005 ( I was attacked 3 months before being diagnosed ) and though very well on the Carbimazole treated with RAI thyroid ablation the following year and nuked - and became much more ill some years later ( RAI consequences ) and then found Stateside Elaine Moore elaine-moore.com - and started my own research into this poorly understood and badly treated AI disease.
In the UK getting the appropriate blood tests and anything other than T4 is similar to Mission Impossible and the stress of it all simply exacerbated my symptoms so I started self medicating in 2018 - run my own yearly blood tests and take NDT and DI for Myself and am much improved.
We do now have some research :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
and guess what - yes - RAI - is still recommended and the first line treatment in the UK - sorry - feel myself getting on my soap box again !!
I will ask the GP next week.
Thank you
I have been following the good advice and discussion following your posts but imagine you are still confused. Are you Graves Hyper ? or Graves with blocking AB's dominating ? or Hashi ? I've spent years trying to understand my own Graves journey and still don't ! Don't stress over it. You seem to be feeling OK but have slightly raised fT3. I would do watchful waiting. At the moment, even a low dose , 5mg Carbimazole, could send you hypo very quickly. If your fT4/fT3 does keep rising perhaps Block and Replace might be a better option to discuss with your Endo.
I have absolutely no idea. If anything, I'm confused
Sorry, should have made my point clearer. My questions were rhetorical as I can empathise with your confusion. None of us have the answers as to what label to use so I was focussing on what I thought was the best way forward for now
I don't think the range for the Trab is important as it needs to be non existent to go into remission from Graves thyroid disease. This is assuming the diagnosis here is actually Graves which to my mind is questionable with a normal t4, high t3. I would have thought TSH would be much lower. If it was me, I would wait for a repeat blood test in 4-6 weeks.
I should have added, I went hyper after a drug reaction where my bone marrow took a huge hit. Once recovered from that, thyroid function returned to normal.
do the graves antibodies still show up on tests when the hyperthyroidism effects disappear?
Graves’ disease 
Graves Disease
Possible Hyperthyroidism/graves--hashimotos thyroiditis
Propranolol for Graves Disease \ hyperthyroidism 
