My husband is on medication for Graves’ disease since February. He is currently on 12.5mg PTU daily. His recent results are:
TSH 1.07 (0.465-4.68) this is the first time his TSH moved from being 0.01 for months
T4 10.4 (10-28.2)
T3 5.2 (4.3-8.1)
He isn’t feeling great, is very fatigued and his eyes have flared up again. His endo first suggested to stop the tablets completely and then back pedalled and said he should stay on the same dose until February next year. What are your thoughts?
I don't really know anything about Graves, but he looks overmedicated now with that very low free t4 and free T3. Can you halve the PTU dose and retest in a 6 weeks or so?
Thanks, he is already cutting PTU in quarters and take quarter every day. I think the next step would be to try and take it every other day.
His FT4 is right at bottom of range. FT3 not brilliant.
Has he had vitamin D, folate, ferritin and B12 tested recently? These can be too low and need supplementing
What supplements does he take
Has he considered trying strictly gluten free diet?
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
Hi SlowDragon, his vit D, folate, ferritin and B12 have been tested and they were very good. In fact he had to stop supplementing vit D and B vitamins as they were very high.
He is taking omega 3, zinc, selenium, vit C, antioxidants for his eyes.
He has been gluten free since March and is following Amy Myers protocol. Not sure if he needs to come off his meds now but it seems a bit soon to do this since I have been reading that patients are medicated for at least 12-18 months.
Lisa254, Rmichelle - can you help please ? (Not sure how to tag people on this)
Lisa254 , Rmichelle 
You put @ before the name, then click on the right name on the pop-up menu.
Graves' so often feels like one step forward and two steps back 
It's generally accepted that you need to remain on antithyroids for twelve to eighteen months to stand the best chance of achieving remission, which is why the endo is saying February. I'm on Carbimazole, but from the link below, it seems that 10mg PTU is considered equivalent to 1mg carbi, and the usual minimum dose of carbimazole is 2.5mg/day, or sometimes 2.5mg every other day, which would average out as roughly equivalent to your husband's dose of PTU.
bnf.nice.org.uk/drug/propyl...
There are some people here (possibly including Rmichelle ) who take their carbimazole every other day, but the half-life of PTU (in effect, how long it remains active) is much shorter than that of carbimazole, so you would need to discuss spreading the dose over two days with the endo.
Looking at previous posts, it doesn't look as though your husband's thyroid levels have been dropping much lately - and it's positive that his TSH appears to have recovered.
is your husband under a specific specialist for TED ? If not, night be worth asking for referral to an eye hospital.
Thanks Valarian. I don’t think it makes sense to discuss it with endo as she had no clue what to do. The PTU tablet comes in 50mg and my husband is already diving it into quarters so he can’t divide it any more. I think he will try to take it every other day and have it checked. I’m worried that he is going hypo.
He has seen an eye specialist before, then his eyes got so much better (when his levels were in the middle). He is now waiting for the next appointment with ophthalmologist.
Did you see a consultant endo, or a more junior doctor ? if you aren't confident in what you are being told, you could ask to see the consultant (which might be an idea anyway if the TED is causing probs again).
You could ask the pharmacist about taking the PTU every other day. Being below range after being accustomed to being hyper for so many months is the absolute pits (I have the t shirt !), but he won't truly be hypo, but rather over-medicated. Also, now that your husband's TSH is working, his levels may come up a bit anyway. I don't want to put you off (as I said, I have the t shirt !), but the last thing you want is for your husband's thyroid levels to take off again at this stage.
She is a consultant, but I think she knows more about diabetes rather than thyroid.
It is very tricky now as he shouldn’t go any lower with his levels and also it is tricky to lower the dose further.
I will also email Elaine Moore and see what she thinks. Thank you!
Hi kari, great advice from Valarian but yes I am on every other day at 2.5mgs, I think too he looks over medicated and if it was me I would try reducing to every other day or every two days!! His free 4 and free 3 is very bottom range and needs to be mid to upper range, abit like mine so I had to reduce my dose myself even though Endo wanted me to stay on every day, sometimes you just have to do what you think is right.whatever you do always retest in 4 weeks. Valarian is so right....its such a up and down disease in feeling OK one time and the puts the next.xx 🌻
Thanks Rmichelle! I think he will do every other day for now and see what happens. We are starting the IVF now so we can’t have him going hypo! XX
Hi kari55 I was on carbimazole for my graves disease only for two months then stopped completely by the endo bcs I was becoming hypo and were getting all the hypo symptoms since then I'm not on any thyroid medication my thyroid is still mildly enlarged and I have now one noudle on it if ur husband try to take his dose 2 or 3 times in a week then see how if goes bcs he s getting the same symptoms which I was getting g when becoming hypo...I hope this help
Thanks Samy3. He will try to take his dose every other day and get tested. The thyroid is a tricky thing.
Hi samy its strange your Endo took you off carbi only after 2 months as the usual procedure would be to lower the dose, I've been on carbi for one year , I became hypo in December last year and tirtlated dose then to bring levels back up.🌻
I know Rmichelle lots of ppl said the same thing but I can't do anything now recently they have found a noudle on my thyroid which is 1cm and u2 noudle everything else normal but weird thing is my ultrasounds keep showing thyroiditis and this new endo thought it looks hashimoto so I don't understand this
Sorry did not look at the t3 ranges they are really low sorry once again
Yeah, both a bit low. It has been like that for 2 months, they are not lifting at all. At least TSH has finally gone up.
Yes if he can lower the dose a bit more and only take it twice a week hopefully free ts will go up
Kari my frees have been the same for at least 3 months that's why I reduced to every other day, I'm retesting again in a couple of weeks in hope they have moved IP , if not I want to come off or go to just twice a week dosage.
How long have you been on medication now Rmichelle?
I've been on meds for just over a year now, so Endo said he wants me on it until at least January!!
I see. So for my husband is still far too early as he only started in Feb. I also read that people treated with Carbimazole remain in remission for longer than those on PTU. Not sure if he should try to switch. The endo gave him prescription for both and told him to decide himself 🙄
Omg decide for himself!! That's professional, I think he had problems with carbi if I'm right ..yes? Maybe not switch then, but I think if he tries every other day then every 2 days , everyone is different, maybe a little to early for him yet, I was told the longer you are on it then you have the best chance of remission but having said that if your frees do not budge after you have tried everything else then I think you would have to see what your levels do meds free.😊
Yes, he had his white cells dropped on carbi but it has also happened on PTU. Elaine Moore said that this happens usually when the dose is too high and it was true, when he reduced PTU this problem has gone away.
Oh right OK I did not know that but it makes sense but I surpose he would be a little hesitant to swap to carbi now, better the devil you know so to speak.
I think you are right in reducing to every other day and hopefully he will feel better, I know with my frees being in the lower levels I have not felt great at all, just want them to move, Lisa said to me she felt at her worst when her frees were around 12 but she feels so much better now they are in high range...so jealous eh😊😊 aaw kari I hope you feel a little more relaxed now with some of the replies you have and hopefully your hubby can support you a little more very shortly in both your journeys to a bundle of joy.😁🍀
Hi kari55, I'm sorry your husband isn't feeling too well at the moment. Great advise from all The comments.
I would also say it maybe worth trying the dose every other day see if that will help his frees move in the right direction. It's great news his tsh has appeared too, really positive from what I have read.
Does he have ted? Sorry I can't remember. The reason why I ask is I don't have ted but I have just looked back at my results over the last year or so and my eyes flared up when my results were boarderline hypo, I had really gritty achey eyes and very gunky (soz) I used eye drops and drops for infections along with cotton wool pads soaked in warm water to help , by the time I saw an eye doctor at the hospital 2 months later he said I didn't have ted and all my symptoms had gone anyway but also I had decreased my carbimazole and my thyroid levels weren't so near to hypo.
I got so ill before Christmas that I called the endo and told him I was decreasing my dose and this is how I managed my medication until he told me to stop i.e. I had my bloods tested then I called the endo told him I was dropping my dose and that was how I went on he seemed to be fine with it. I wish I'd managed it like this earlier in my treatment but hey it takes a while to realise you have to become a pro with this disease!!
I hope this helps 😊
wishing you well for your IVF
Lisa xx
Thank you so much Lisa.
That’s interesting about your eyes. He has got mild TED but when his eyes got better a few months ago his eye doctor wasn’t sure anymore whether he has got it or not. His eyes are not bulging but but are red, painful, gritty and blurry. He struggles to get his glasses prescription right at the moment.
I think he is done with his endo now especially that the insurance won’t cover it anymore. He will try to see someone else on the NHS. In the meantime he will do blood via GP or Medichecks.
I really hope that reducing the dose helps him, as now during the IVF he needs to support me.
I hope you are doing well xx
Ah that's interesting as when I have bad days my vision is blurred but only when I try to read, I then get my eyes tested (annoyingly my vision is never blurred when I go!!) as I think they are getting worse and they always say no your eyes haven't changed since 9 years ago, I wonder if it's the brainfog/lack of concentration from the disease.
I really hope the dose change helps him, you have been amazing for him with all your researching etc you both deserve something good 😊
Yes I'm doing ok thanks I'm 2 months of being medication free now and I think last week was a massive turning point for me I finally feel like I'm starting to recover and getting my life back on track !! Xx
Frustrating!
His eyes are flaring because his TSH is now rising! It is very important to keep TSH suppressed in order to keep antibodies low. Even my GP understands this basic element.
I feel that his treatment should be driven by his ophthalmologist as they often know much more on how to balance the meds. I would never have gotten through my journey with thyroid eye disease without my ophthalmologist who enviably improved my thyroid health.
Thanks Shambles, I thought that tsh lifting is a good sign and it means he is getting closer to remission?
Treating Graves' becomes more complicated when thyroid eye disease is involved. The two diseases are separate and one can be present without the other.
umkelloggeye.org/conditions...
Thyroid Glands Relation to the Eye
Although Graves' disease and Graves' eye disease both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other. That’s why treatment of the thyroid gland, while important, does not improve the eye disease. The two diseases run their separate courses and do not necessarily occur at the same time.
Most doctors in the UK do treat by TSH but most here would say that's not helpful and that it is how you feel or to look at your FT3. In Graves' the TSH is maybe more relevant than those with that are hypo. Your husband's TSH rising suggests he now going back toward what might be called a normal TSH but you say he feels terrible! He might in the right number but its not helping him, so it should be down to how he feels. To be in remission, he would have to feel well pretty much regardless of what the numbers say as it's each to their own and on no medication. At the moment he is achieving these numbers with medication and it's not doing either. But this is were it gets a little complicated as he has thyroid eye disease and the treatment for that is to keep the TSH low to suppress the antibodies. BTF foundation quote under Risk Factors - Fluctuations in thyroid levels, particularly high thyroid stimulating hormone (TSH) i.e. hypothyroidism. btf-thyroid.org/information....
Depending on his eyes, most doctors whether GP, endo or ophthalmologist would prioritize the eye treatment first and get them settled to prevent them developing into a real problem. Often if they feel the Graves' is out of control and difficult to control they will remove the thyroid immediately to prevent the eye disease becoming aggravated further as they did with me.
Interesting article. My husband has seen a well known ophthalmologist who told him to keep levels in ranges. To be honest he was quite disappointed. I think this doctor was more interested in people with severe TED.
I guess to keep TSH low his frees would have to go up which is now hard to achieve. A month ago his TSH was still undetectable and frees were as low as they are now and he was feeling terrible too.
As you said it is quite complicated. I’ve emailed Elaine Moore and see what she says as well.
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