So I am waiting for an endocrinologist appointment- pushed out to May, since I was diagnosed as hyperthyroid in Feb. I’m looking for any insight into the severity of my condition and would love to hear your stories how it’s going if you have similar results to me! Here goes:
TPOAb 178 (range 0-34)
TRAb 3 (range 0-3.3)
FT4 38 (range 10-20)
TSH 0.01
The meds are ok, heart rate going down to more healthy levels but can still go high if I eat salty foods or get stressed, particularly at night, but not consistently.
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Hungryallthetimes
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Are these your readings at diagnosis as the TRab - which is the Graves antibody reading is negative at 3 and under the range quoted which has a cut off at 3.30 :
however your TPO antibodies are positive and over range at 178 in a range cut off of 34 :
so think you are likely looking at Hashimoto's Auto Immune rather than Graves :
It could be your immune system is upset so much that both these AI diseases have been triggered - but currently, with the above blood tests only Hashimoto's is a positive.
Are you eyes with any symptoms - dry, gritty, streaming, light sensitive - just be sure if using any drops to ease the pain that they are Preservative Free - even those prescribed :
Do you have any experience of successful diets to help overcome AI?
I’ve read loads but they all seem very hard. I’m sticking to the reduction in iodised salt and going low dairy. Seems to help. Next stop, removing Gluten, even though I’m not Celiac…
Eyes are puffy and have big bags under them but if it sleep and avoid UPF, they are reduced.
Gluten came back negative, but I’m reducing gluten and going to give gluten free a go next week after Easter. Can’t hurt.
I’ve removed dairy from my diet for 3 weeks and my stomach improved but have reintroduced yoghurt for other benefits.
Thank you for sharing the links, I will take a gander.
Wow, Hashi’s to look forward to. Reading about it, my late Nan had all of those symptoms but probably wasn’t diagnosed or at least we didn’t know. Poor woman! She had all the symptoms! I’ll think of her when I get it!
Yes - if referring to Ultra Processed Food - just leave alone - irrespective of tests :
I don't seem to have any food allergies but then I have always eaten clean and cooked from scratch anyway and at a very different time of my life than you.
I was also diagnosed similar time as you by sounds - I gave up waiting for NHS endo apt and went and saw a private consultant. My story’s in my bio, and you can see my posts but similar results and negative Trab but positive TPO. It’s a journey and no answers yet but hoping to feel better now on Carbimazole and will see what next results show in six weeks by which time my nhs apt might of come through! Everyone on here’s really helpful and knowledgeable.
Your results are incredibly similar to mine and your username is one I could have chosen!
Please do have a read through my previous posts and the comments on them. I don't know enough to advise yet but I've had some very helpful information along the way.
Best of luck to you. In my (limited) experience, it does begin to get better.
It's great to hear you're starting to feel better!
If you have Hashimotos and not Graves like I apparently have, your T4 should also drop quickly. Make sure they're testing your bloods regularly. I am doing a private set next week, as I am concerned mine will be below range long before my next NHS tests.
I haven't tried any specific diets. I've been struggling with my weight, have past eating disorders, and am incredibly fussy so that'll be the last thing on my list! I'm hoping lifestyle changes, medication, and supplements will be enough. Do let us know how you get on though, I hope it helps.
If you are struggling with your eyes let your GP know straight away because it seems the wait for a TED ophthalmologist is very long. Mine are becoming unbearable some days.
Everything else is improving though and I'm sure they will for you too 🙂
Has anyone mentioned The Thyroid Eye Disease Charitable Trust - tedct.org.uk ?
This charity can signpost you to your nearest specialist eye unit - which are generally attached to large teaching hospitals throughout the country - - where an endo and an eye specialist in the field of Graves / TED - work together to find the best treatment option for you.
In the meantime please ensure all eye drops and heavy overnight ointments are Preservative Free - even those prescribed by the NHS.
I'm not sure if to me or OP but I have contacted them, thank you. I'm still awaiting a response but the nearest TED place to me is the one I've been referred to by the Endo and the GP. My optician also wrote to them. Fingers crossed they expedite my referral.
I am using Hydramed sensitive eye gel several times a day, and Hycosan Extra when out. Both are preservative free and I recommend them to anyone else suffering dry eyes - they have helped with that, at least.
The swelling, unfortunately, doesn't seem to be helped by anything.
Stable thyroid levels helps TED. Starting carbimazole affects levels & this is reported by many to worsen TED. It’s the fluctuating or low FT4 & FT3 not the medication directly. Some switch to block and replace which can stabilise levels quicker.
No - if we are looking at Graves it is considered life threatening if not medicated -
and since there is no cure for Graves -
the treatment is with an AT drug - to semi-block your own natural new daily thyroid hormone production to offset the worst of the symptoms being tolerated -
whilst we wait for your immune system to calm back down again and hopefully your thyroid reset itself without the need for any drugs.
If your immune system is very active and unable to be controlled by the AT drug there is the option of Block & Replace -
whereby your dose of the AT drug is increased to fully block your own thyroid hormone production BUT a measured dose of T4 is prescribed so your T3 and T4 do not fall too far through the ranges and hopefully this option offers the patient a more stable - wait time - while we wait for this first phase of Graves to calm down.
What is important is finding the most appropriate dose of the AT drug that resolves symptoms with the least amount of medication with regular blood tests tracking the T3 and T4 back into range and we see a smooth transition down with the T3 and T4 not falling like a stone too far through the ranges.
Bit like my analogy using a plane - as now we need a smooth landing - rather than a bumpy one - does that make sense ?
My T4 levels are dropping and I've been reduced to 10mg now, so hopefully I'll be on the lowest possible dose soon.
I think it is a hyper phase of Hashimotos rather than Graves but either way, the hyperthyroidism needs to be controlled as that was causing my symptoms.
I'll put up with the eyes in payment for everything else improving for now.
I’m sorry I don’t know that much about hyperthyroidism. I have hypothyroidism Hashimoto’s and a very poor converter of t4 to t3. Maybe your medication needs increasing to reduce your thyroxine as your level is so high and TSH very suppressed almost undetectable. I do hope you can have further blood tests soon to try and get your dose right and get it under control. If the NHS are taking too long consider trying a private route to speed your treatment up. I see a brilliant private endocrinologist who does zoom and telephone as well as face to face. So no need to travel. Just message me if you’d like his details. Can’t mention Drs names in here. Another thing to keep an eye on is your white blood cells, these are done in a full blood count test. With low white cells you might be getting infections more often or difficult to shift any infections. High thyroxine can cause low white count. Also check your vitamins D, b12, folate and ferritin levels they need to be very good. You may need to supplement.
20mg carbimazole a reasonable starting dose for hyper FT4 38. Usually function should be retested ( TSH, FT4 & FT3 ) 6 weekly until stable, as likely dose will need to be adjusted.
Hungry and low TSH is common with hyper, once levels in range hunger will settle. I gained weight while hyper & lost weight once thyroid levels mid range.
TSH can remain low & unreliable. Adjust carbimazole by FT4 & FT3. Carbimazole brought my FT4 & FT3 in range but TSH remained undetectable. 5 years on treatment.
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