hashi’s three years ( tpo 180/ t4 8 on diagnosis). Graves confirmed one year ago, Trab 4.5, t4/T3 over range. Carbimazole started and reduced as levels very quickly dropped, also ted . Carb eventually down to 1.25 per day, but still dropping free T’s and raising TSh even at such a minute amount. But the Trab are still active. I even tried 1.25 carb with 50 mcg levo and free t’s dropped further!
Endo has stopped carb for four weeks. What’s worrying me is Ted is very active, assuming because of Trab levels. Should i take the carb? I’m at a loss. Any advice is welcome, but nothing to technical. At this stage i feel more confused than i did when i started out on this thyroid mystery in 2018!
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Read58
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Regarding TED, this can be active with and without Trab. Just checking, are you supplementing with selenium, as 200ug day in active phase has been shown to be beneficial in mild/ moderate cases. My TED specialist ophthalmologist recommended regular doses of ibuprofen in a TED flare, but if you choose this option, protect your stomach and take with food. Also use preservative free eye drops liberally, eg HycoSan or Hyloforte. Also use 2 pillows to elevate your head in bed. TEDct are a great organisation, providing support and advice. They helped me find a TED specialist in my area.
hi Buddy195, thank you for replying, yes supplement with selenium and ibuprofen. I use thealoz duo gel and drops constantly ( even have to use through the night. The TED specialist in my area, who i have seen once, said i needed careful monitoring because of high pressures, then cancelled my 16 week follow up and gave me one, which will be seven months since i last saw him. So I’ve basically spent months despairing over my eyes, with no help. The eyes have affected me worse than Graves and Hashis put together!
I really feel for you Read58. I would try to contact the secretary of the specialist and highlight your condition/ ask if any cancellations. Have you joined the TEDct Facebook group?
hi Buddy195, yes i follow and read TEDct. I have left a number of messages for my consultants secretary to try and get a sooner appointment. She never returns calls. I went to my opticians as a back up plan and he checked the pressures hadn’t increased further. Thank you for your reply and empathy.
I’m glad you have regular readings of eye pressure at your opticians. If it does increase, I would ask them to email the consultant & / or contact your GP to do the same.
If you have Hashis / Graves & TED you are going to be especially susceptible to fluctuations due to a mix of stimulating & blocking antibodies are going to be impacting unexpectedly on levels.
Has a doctor suggested block & replace? a higher level of carbimazole eg over 40mg to block all thyroid function, then a full replacement dose usually over 100mcg. To restore missing hormones.
Having TED means that fluctuations & extremes of levels can affect this condition which is why getting stable is important.
As you said a very low dose of carbimazole & very low dose of levothyroxine isn’t going to stop those extremes.
Carbimazole works by altering how much the thyroid can produce, levo replaces low thyroid stores.
Carbimazole does treat the antibodies. it’s to manage the result (high thyroud levels) and antibodies reduce as the condition runs it path.
Do you have any results? TSH, FT4, FT3, Important to test vitamin D, folate, ferritin, B12.As any result with range (ranges vary between labs so important)
hi Purplenails, endos in my area don’t believe in block and replace. I did it myself and followed a regime recommended by a lady called Elaine Moore. She advises people on low dose carb and levo. Weirdly it lowered my t4 & T3 levels, (only very slightly lowered) I have used guidance given on here regarding vitamin protocol and everything is spot on, so no problems there. My last results were tsh 1.2 ( 0.1-5), t4 11 ( 12-23), t3 3.2 ( 3.5-6.5). That was on 1.25 carb, 50 mcg Levo. Tpo checked a few months ago and within levels. I am having trab and thyroid bloods next Tuesday, which will be after four and a half weeks of no treatment. I was curious to see if anyone on here could throw any light on it, as i’ve followed this forum for years and know you all have a mountain of knowledge. Thank you so much for taking the time to reply.
low carb & low level levo is “add back” therapy. By reducing the funtion of thyroid (carb) and adding levo replaces level replacement also helps to reduces output) this can work well in some.
You can’t reduce carb further as already very low. So you’ll need to increase levo, below range FT4 & FT3 needs to be avoided.
it just confuses me that such a tiny amount of carb makes me hypo, despite trab being raised. Spend most of my life now, blinking confused by thyroid issues!
TRab (TSH receptor antibodies) - measures - stimulating, neural & blocking antibodies (all which affect the TSH)
So if you have high blocking antibodies you could have ‘hypo graves’ even without carbimazole. You previously had Hashimoto’s diagnosed so it’s not such a stretch you become hypo again.
Some specialist test TSI antibodies (Thyroid-Stimulating Immunoglobulin) which measure stimulating only and some consider a better biomarker for Graves, but TRab is considered better biomarker for TED.
Thyroid issues confuses everybody even specialist (especially specialist) The thing is you can’t predict what your levels are going to do, no matter what your antibodies, TSH are currently showing. It’s a case of monitoring & adjusting dose by FT4 & FT3.
When it takes time for an adjusted dose to settle & if levels are naturally fluctuating keeping up with changes without making too many adjustment is going to be difficult.
Block & replace should be a second option. A higher dose of carbimazole in never preferable. The regimen also masks what is going on with levels & can become an excuse for doctors not to closely monitor but if levels are very difficult to control doctors shouldn’t be refusing to consider it.
hello there, I have graves disease and also TED, since 2018.I was on block and replace until I had my thyroidectomy in june 2022.My opthamologist said fluctuating levels were not good for TED and I also found both high or low levels of t4 made mine worse.Mine is still active.At the moment I am awaiting a consultation to see if I have glaucoma.My vision is not right and particularly my right eye is blurry.My pressures were up in both eyes and my eyes were bloodshot on my last visit.I have had various tests and now await my appointment with the consultant.He said I can have an appointment in approx 2 months.I've been researching and apparently other eye problems can cause secondary glaucoma.Although my dad has it and I have had 2 cataract operations and a detatched retina in the past , which also is a risk factor.This is just my experience, just to be aware.I know it doesn't help when we have to wait so long for appointments.Hope you find a way forward.Best wishes.
hi Cavapoochonowner, your TED sounds very similar to mine. Consultant told me the high pressures could cause glaucoma ( maternal grandmother had glaucoma), then cancelled my follow up and left me petrified at what could come. Its not a pleasant disease to have, not only the symptoms, but feeling like a freak too with deformed, bulging eyes. I keep reading on forums in American of all these fantastic treatments, help etc their consultants give and feel quite neglected in my experience in the UK. Best wishes to you too and thank you for replying
You're welcome.Can I also say I agree with the other replies you have had.I have been taking selenium since I was first diagnosed(information was on Thyroid UK website) and my opthamologist reiterated this saying my TED would be much worse if I hadn't been taking it.He also recommended ibuprofen for the inflamation if it is particularly uncomfortable.The only consellation I have is that he must not think it is the type of glaucauma which is sudden, painful and rapid.(That is if I actually have it).It is quite a slow and silent disease although any sight loss is permanent.It is terrible waiting isn't it.Best wishes to you.
I have Graves and TED and like you swing hypo/hyper which worsens my TED. Unlike you I have no Hashi antibodies but probably fluctuating stimulating and blocking TRAb. After 7 years I am confident enough to make small changes on my own. If I had your results I would be thinking - well I'm obviously hypo at the moment and need to increase my Levo. I wouldn't stop Carb.as even at low doses it has an immunomodulatory effect. At the moment I take 5mg. Carb/75 mcg. Levo. Regards eye pressure, mine is 29 and checked regularly but read a recent paper that said although pressure is often raised with TED there was no evidence that this led to an increased risk of glaucoma.
that’s reassuring to know asiatic, regarding the pressure. Thank you. Thank you also for replying . (I will have bloods next week and restart meds according to that)
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so confused.....
Help please!
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