My husband has got Graves’ disease and he is also one of extremely rare cases who reacted to both drugs with white cells drop. I still struggle to get my head around it how come he is one of these very few people. After last blood test, his cells were below range so he will be closely monitored again and he started having a sore throat today. I’m obviously stressing like crazy but I’m worried sick about him. His endo says he needs to have RAI or thyroidectomy. Are these the only options? Isn’t there and trial drug that would cause those side effects? What about LDN? I would be grateful for any advice.
Options after Carbi and PTU caused neutropenia - Thyroid UK
Options after Carbi and PTU caused neutropenia
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Kari55
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Sorry to hear this, Kari.
The Apitope trial sounds quite promising, but it’s still at clinical trials stage, and I’m not sure whether they are currently recruiting. apitope.com/apitope-progres...
I don’t know much about LDN, but it’s difficult to find any serious articles from medical journals, so it isn’tclear whether there has been any proper research conducted.
Your endo may not like it but there are natural alternatives. Natural anti-thyroids can be just as effective as drugs and especially when combined with acetyl l carnitine that protects cells from excess thyroid hormones. What are your husband's ft3 and ft4 levels and symptoms like? The only problem is natural options can take a bit longer. Go to Elaine Moore.com and check out the articles she has on alternative treatments. She's a pharmaceutical researcher and graves expert so she's trustworthy and never selling any snake oil crap
I will check out Elaine and might even email her. His T3 and T4 are within normal range, I would need to check the figures later at home. Thank you Cat4health!
I took a look at Elaine's website and found this. Maybe better options for now.
In Great Britain and Europe, carbimazole, a derivative of methimazole is most often used. The active ingredient in both compounds is the same. Other ATDs include aniline derivatives such as sulfonamides and polyhdric phenols such as resorcinol. Other compounds with antithyroid properties include lithium salts, high concentrations of saturated potassium iodine, thiouracil derivatives, oral imaging contrast dyes, some anticonvulsant drugs and iodide transport (ionic) inhibitors such as perchlorate.
Also this from Elaine.
Patients with all forms of autoimmune thyroid disease are known to have low selenium levels. Whether low selenium contributes to the condition or is caused by thyroid dysfunction is uncertain. However, recent studies show that patients with Graves' disease using selenium and the antioxidant vitamins beta carotene and vitamin C along with the anti-thyroid drug methimazole showed a better response than patients using the anti-thyroid drug methimazole alone. Patients improving from or in remission from autoimmune thyroid disease have higher selenium levels compared to their initial levels at the time of diagnosis.
Cat4health, what dose of acetyl - l- carnitine should my husband be taking?
I know i sound like a broken record but ElaineMoore.com has guidance on that. I remember when i took it I started with a lower dose n built up a bit til it felt good
What an excellent site. She is certainly keeping up with the research.
I have had neutropenia for many years. My doctor just refers to the ongoing results whenever I have a blood test. I’m not aware that it affects me in any way. I take vitamins and minerals to supplement and immune boosters in flu season and manage to keep healthy. I wouldn’t worry. But maybe I’m missing something? LB
Hi Lisabax, my husband’s endo says that he can’t be in neutropenia and needs to have his thyroid killed off. Do you get sore throat?
Are you taking antithyroids lisabex ? (eg PTU or Carbimazole). The issue for hypers on this treatment is that they can rapidly deplete the white cells to an extent that requires urgent hospitalisation. We are all warned about this, although in reality occurrence of this is very rare. However, it’s easy to see why they aren’t keen to prolong or increase antithyroid treatment in a patient whose white blood cell count has been depleted on both of the two usual anti-thyroid treatments.
Wow!!! He's subclinical hyperthyroid and they are pushing for RAI. Well done you for questioning this!! Definitely ask Elaine - she has a members question forum n membership just means creating a profile. If his levels are within range he may not even need any anti-thyroid as the only main point of those is to get within range. Was he very high before the drugs?
He started on 40mg of Carbimazole and developed neutropenia so was switched to PTU 150mg, he started feeling unwell and his pulse was low so reduced his dose to 100mg - his endo didn’t tell him off. Now she told him to be on 100mg, though she originally told him to be on 50mg. He will go on 50mg now I think. His endo isn’t very helpful, she just want to kill his thyroid off as it would be easier for her to manage.
Having thyroid levels within range after what I think is a few months’ treatment within antithyroids isn’t the same as subclinical hyperthyroidism. Normal practice for Graves’ is to remain on antithyroids for 12-18 months, in the hopes that the thyroid will stabilise and the Graves’ will go into remission. If Kari55’s husband’s thyroid levels remain stable while his dose is reduced still further , hopefully they will stop pushing RAI.
Yes you are correct but we have no info on his starting levels. I said subclinical thinking that his starting levels were in range but then asked for that info. Its obviously not an option to stay on d meds so that's where other natural anti-thyroids come in
Sorry, I should have perhaps given more details. He was very ill in February and his levels very very bad so was on 40mg of Carbimazole after which he developed neutropenia. He was then switched onto PTU 200mg. The drugs are working as last week’s blood test confirmed his levels are within normal range - apart from TSH which is still undetectable. Unfortunately, it looks like PTU is also causing a white level cell drop so his endo insists on RAI or thyroidectomy. He would need to remain on medication for another year or 2 and I’m not sure if he is going to be able to do it having this dangerous side effect. It would mean that he would have to stop his meds to allow his cells to lift and start them again. He is taking vitamins which were tested and are all in normal range, also taking probiotics, omega 3 oil, vit C, selenium and zinc. Will get the l-carnitine too. He is also following AIP diet. If his immune system could handle the meds, everything would be ok...
Kari55, You haven't mentioned how your husband is feeling? If his freeT4 and freeT3 are in range, unless his symptoms are very bad, he may be fine.
I'd definitely be skeptical of whatever doctors are saying to you, and become knowledgeable yourself, to double check what they say.
Also do some work on calming yourself and not worrying too much. This may be a marathon rather than a sprint.
Hi SilverAvocado, he isn’t feeling too well and started getting a sore throat this weekend. He gets tired quite easily too. I think this is more to do with his white cell drop rather than thyroid. You are right - it is a marathon.
Although that doesn't sound very nice, I'd expect someone with Graves to be quite disabled, and in a huge amount of discomfort, unable to sleep, very weak, frightening heart symptoms, loose bowels, feeling hot and bothered all the time. I may not be fully right about that, as I haven't had it myself, but have been over medicated and couldn't bear the discomfort.
It sounds like you're saying he's just a bit under the weather? And that even that may be caused by the treatment rather than the illness?
This makes me suspicious again that the doctors are beingg overzealous. I'd definitely continue to double check and not agree to any extreme treatments until you're completely sure he needs it.
After surgery or RAI he would be hypothyroid, and dependant on thyroid replacement for life, which can be out of the frying pan into the fire.
I had uncontrollable Graves from age 12 but I certainly wasn't "disabled" and I wouldn't liken it to being overmedicated either, been there as well.
If Graves is uncontrollable or meds are not working then either surgery or RAI is an answer to the problem, it may not be plain sailing afterwards but neither is dealing with long term Graves.
Thanks Bantam12, I have not experienced Graves myself.
Thankfully, the worst of the symptoms typically begin to subside after three to four weeks of treatment.
Yes, he had all the symptoms when his levels were out of order. Now his thyroid levels are within normal range but he still a maintenance dose but medication causes his white blood cells to drop. I hope we manage somehow without killing off his thyroid.
Hi kari so sorry to hear that your husband is very sick. I will keep you and him in my prayers.
Hi Kari, I've read some of the posts and feel badly about all the problems you are encountering. I would hate for your husband to have the RAI but you are in a tight spot.
I would definitely try the LDN immediately. We've been learning so much about autoimmune disease and while the diet, heavy metals, gluten and the Epstein=Barre virus may all be triggers, it's because any of them are stressing the body. He may have to detox and then he has to get out of the high cortisol, fight or flight which they find alters the nervous system and therefore the brain. I know I may be sounding off track and too complicated but the hormonal and chronic conditions are getting out of control. I would definitely try everything before having RAI. I've posted some information about proteolytic enzymes which is very safe and could be really helpful.
I wasn't aware of the white cell factor with carbimazole but obviously you have to find something safer in the meantime.
Thanks Heloise. Yes, the white cell drop is a real issue for my husband. He didn’t tolerate Carbimazole and now he doesn’t tolerate PTU well either so we are running out of options. I’m also worried that even if he has RAI or thyroidectomy, he won’t be able to tolerate any thyroxine meds. He is taking some enzymes but I will check out your post too.
Will the LDN would need to be prescribed by endocrinologist?
I’m not sure if my husband can do a detox- he is 10,5 stone with height of 6ft6 and I always associate the detox with a weight loss.
If you could find a functional medicine doctor, that would be ideal. I would suggest a naturopath but they can't always prescribe and you probably need one for LDN although sometimes you can find it over the counter. They discovered that LDN was effective against multiple sclerosis accidentally while treat alcoholics with a much higher dose. Now they use it for other autoimmune conditions. The damage is to the myelin sheath on certain nerves which of course interferes with the function in MS but I guess all nerves have a myelin sheath.
Does he take selenium? When my son became hyper ten years ago I did a lot of research and back then it was always a selenium problem for one but now I think we realize any deficiency your body is dealing with starts in the gut and the gut bacteria. He also took methimazole and went into remission.
You said you are doing the AIP diet and I hope that helps. These Longevity programs and The Broken Brain Series all bring out that the mitochondria is responsible for so many actions in the body and they need lots of fats, good fats.
I liked Elaine's articles because I've spent decades studying autoimmunity and know at least that conventional medicine will never be the answer.
I have just watched the latest longevity episode and found it fascinating. Yes, my husband is taking selenium. I’m not sure if we will be able to afford a functional doctor. There are only 20 of them in the U.K. and their prices are ridiculous. His immune system is getting really low, he can’t shake off the cold. The AIP diet is helping but he is catching everything up which scares me. I will enquire about functional doctors though as the experience with endo is hopeless.
Do you mean the one on cancer? This one is amazing and with cancer being the first cause of death between age 40 to 60 is terrifying.
In Elaine's article, she states that white cells are destroying the thyroid so now I wonder why that isn't a good thing although I know why low white cells are a bad thing. Arggg
It is the most frustrating thing about doctors and some of these protocols you just cannot do on your own. The doctor in today's program said that some of her patients on the ketogenic diet became very ill (the ones with cancer) so it is nothing to fool around with.
I wish I had more information. How about John Bergman's video on Graves? Has your husband tried going gluten/dairy free? Well, I'll keep digging. I do like Elaine's website and will read more of that.
Thank you Heloise!!! I will check out John Bergman. He is gluten free and diary free (he is diary intolerant and definitely has a leaky gut).
Yes, I watched the one about cancer and dementia. It’s interesting that cells become cancerous when this is their last mean of survival. I’m happy that our infertility and now my husband’s Graves made us to turn to eating unprocessed food. The stress is still a major factor despite of our efforts to reduce it or deal with it better. You are posting some great content, thank you!
I hope you find your answers because I am sure there is one......somewhere in our environment. And with cancer when apoptis stops, that damaged cell which should be destroyed isn't being destroyed. The doctor says that cancer is a super inflammatory disease so here is where the enzymes may come in and you could actually start something and not too expensive and no real side effects. Serrapeptase, sodzyme, nattokinase and Wobenzym are ones you could read reviews about on iHerb or Amazon and see what people say. If we aren't digesting it can be a gall bladder/bile issue and also pancreatic dysfunction. One lady here has a husband with pancreatic cancer who has cured it. Enzymes were a big part, probably digestive ones which also recycle as proteolytic enzymes, so they say. I've taken all of the above and something has helped. You do not take them forever. One more thing that may have value from Dr. Nemecek's protocol is there is a difference between oleic and linoleic acid. Taking fish oil has too much EPA and he feels you need more DHA which I use also. To block the wrong oil, he suggests that extra virgin olive will block it. I think two Tablespoons is the dose. But I really don't know a lot of specifics. If you want the you tube video on that, let me know. I don't want to drown you with info.
Oh, one more thing, lol. I've even told my sons to take some progesterone. Men can have more estrogen problems than women so has your husband had any of those tests.? Can you use Medichecks or Blue Horizon? I really think the answer is somewhere.
Some of the doctors in the docu-series are doing skype interviews. I wonder how that works.
I have to say that a friend in Arizona is seeing one who believes in the sympathetic state causing most chronic disease has created a little device that goes on the earlobe and stimulates the vagus nerve and she is improving from her longterm Lyme condition. He also recommends certain fats.
I think that in the US there would be a lot of opportunities and options. Unfortunately we are not as advanced here I will however check what the options are.
Maybe your husband would want to watch this one. Researching enzymes, there were several experts who I listened to and Wong was interesting especially for men but he went ahead and developed his own formula of enzymes, so did Dr. Jon Barron who is also brilliant.
Hi Kari55 , I dont know if you will read this but I just happened to see your post and wondered how your husband is doing now and if he went ahead with any of the other treatments?
Sadly their answer is always rai or surgery it makes it easier for the endo rather than the patient. I've been on Carbimazole for 2.5 yrs now and at my last appointment she was pushing for rai or surgery despite my levels being within range. Although my antibodies are still raised. Is your husband's sore throat due to a virus rather than medication, just a thought 🤔 hope he feels more like himself soon
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