[Oberon]

#1058941

I found out Wednesday I have Graves. I am 47 and my symptoms are mild so far. I am taking propranolol and the heart rate and BP are under control. My Endo wrote me an order for RAI if I choose that route. I have a low WBC to begin with so she will not prescribe methimazole until I get cleared by a hematologist.
My doc spent a while warning me about the side effects of the anti-thyroid meds. After getting freaked out about it, I started to seriously consider RAI. So glad to find this site. Seems that reduced WBC is a rare reaction to the anti-thyroid meds, right?

Getting this over with vs. waiting and trying the meds

Lisa

[Kimberly]

#1171072

Hello and welcome! Yes, agranulocytosis (severely reduced WBC count) is a rare side effect of Anti-Thyroid Drugs, and *usually* improves after the patient stops the meds.

The article below goes through the pros and cons of the three treatment options, and notes that about 1 in 400-500 patients on ATDs will experience agranulocytosis.

(Note on links: if you click on the link below, you will need to use your browser’s “back” button to return to the forum after viewing. As an alternative, you can right-click the link and select the option to open in a new window).

http://www.gdatf.org/about/about-graves-disease/patient-education/treating-graves-different-strokes-for-different-folks/

The latest guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association notes that “…a baseline absolute neutrophil count <500/mm3 or liver transaminase enzyme levels elevated more than fivefold the upper limit of normal are contraindications to initiating antithyroid drug therapy." This is why your doc is being extra cautious.

All three options do have risks and benefits, so I would encourage you to learn as much as you can (from credible sources, obviously) before making a final decision.

Take care!

[Jules]

#1171073

This is a tough dicession we all have to make. The people on this site are the best is answering specific questions to help you make your choice.

I tried the Meds approach and found out I was allergic, I wanted surgery but there was not one surgeon that would do surgery on me because my numbers were too high because I could not do the Meds. I researched many in my area. I Had to choose RAI after 3 months of research.

Warning if you have any eye dryness or any signs of uncomfortable eyes please see a Neuro Opthamolgist before having the RAI to help protect any eye issues if you have them.

I wish I had this advise before having my RAI. Would have answered a few questions I now have.

Good luck and I hope you find your answer sooner rather than later.

[phuffman39]

#1171074

Did you have eye issues before? Did RAI make it worse? That is my question. I keep reading RAI can make eyes worse but the opthalmologist that recognized my Graves said she wasn’t aware that it made it worse….which makes me worry. I would say my eye condition is mild (gritty sensation, swelling of tissues above and below eyes, and mild eyelid retraction) I sure dont want it to get any worse!

[Oberon]

#1171075

Thanks for the responses. I spent the weekend thinking of nothing else. I have gone back and forth several times. RAI appeals to me so that I can move on from this. The eye issue risk scares me. One question I have is – if you have no eye disorder symptoms before RAI, will they onset because of RAI. My symptoms are so minimal now. Do I wait and mess around with the meds and risk getting more symptomatic?
Does anyone know if symptoms get worse the longer one has Graves or is it possible is is the way my body reacts to this? Am I just kidding myself?

I see a hematologist on Friday to determine if my low white count will be an issue with meds. The risk there is scary too.
Has anyone out there tried the homeopathic route?

Thanks again. This site helps a great deal.

[Jules]

#1171076

Yes I had eye issues before RAI. I knew i did but My endo did his own measurement and poopooped my concerns. He thought that protrusion (eye balls sticking out) were the only issue he had to look at) ugh I hate endos.

Just because you have Graves does not mean you are going to have eye issues. However if you think you might just have it checked first. There are a lot of people who have had RAI with no eye issues. I am just not one of them

Anyway…

My case is not a usual case. With in 3 days of RAI I had night blindness (everything with a light was stray and I could not see anything but the lights they were blinding to me) then I had really bad dry eyes watery terry eyes, then puffy eye lids, then eye ball sticking out farther than the other, I finally got in to a great neuro optho and he is helping me through this disease. I just had orbital decompression on the o e big eye 6 weeks ago. I will be having more surgeryies in the future. But like I said I am not a normal case.

Now that I have a major case of TED. I actually believe about 8 years ago IAd an eye issues flair then. went to a reg opth at that time they said oh your just getting use to the smog ( I had just moved to and area of major smog). I was selling a business and a home starting a new business and buying a new home. Under a lot of stress so I never thought anything about the weight loss at the time. I was loving my new figure. I was DX with graves in June 2010.

My recommendation is if there is any concern with your eyes have them checked my a neuro opthomoligist before you under go RAI. There are things they can check and preventive measures your can take like steroids before and during RAI.

Personally if I had other issues with the Meds before I started them I would get all the info I could before going that route. Like they say hind sight is 20/20 so now I ask lots of questions and do lots of research BEFORE I do anything when it come to my health. I also say that the least invasive approach should be tried first before going more drastic. The endocrine is a very complicated thing, it controls your whole body.

[debbie12]

#1171077

I have decided to take some natural supplements along with selenium, carnitine,high amts Vit C, and Vit D. Changed my diet avoiding bread, sugar, high carbs, and added several oils to my protein shakes. Options for hyperthyroid as far as I am concerned create “other problems”. I started to take the methmizole and after 3 weeks my ALT went from 23 to 50. I can only imagine what it would be in 2 years. 2ND option- Swallow radioactive Iodine. Well the Iodine doesn’t only go to the thyroid. You “swallow” it therefore it goes to your stomach and bowel. I happen to work in healthcare and have seen pt’s who do the RAI later get thyroid or breast cancer.3RD option may for some people with extremely horrible symptoms seem to be the best option for them SURGERY. I just wonder if they haven’t given it enough time trying to MANAGE the symptoms which I have chosen to do. I am not saying that it’s easy. So far I have lost 14 lbs and had to take Propanalol to keep my heartrate in the 80’s instead of 120-130.Strange enough 34 yrs ago I was diagnosed with Hashimotos (hypothyroid). Took synthroid for 10 yrs then cut my dose in half and checked labs until I was off the synthroid with normal T3 T4 TSH levels. Just this year after no thyroid meds for 24yrs I felt EXHAUSTED and had Brainfog, muscle weakness JUST like 34 yrs ago so I swore it was the Hashimoto. Much to my surprize it was HYPER . I really believe it is a hormonal fluctuation that can cause this.First it was right after I gave birth to my daughter and NOW I am 54 (MENOPAUSE?). I also believe that if you get your hormones regulated (I started Bio Identical hormone cream) and change your diet and Get the right Supplements you will be able to TOLERATE and LESSEN your symptoms to SEE if this is something that will work itself out with attention and patience. It MAY take a year or 2 but thats how long the Methmizole takes if and when it does work. I’ve heard people get the RAI after all that. I am just sayin that it cant hurt to try. I am afraid that alot of times people are SCARED INTO making a quick decision. THATS the reason I joined this group. You guys have given me the confidence by hearing what works and doesnt work. The only thing I am not sure of is the Iodine. My instincts tell me with autoimmune thyroids it could make it worse BECAUSE thyroid cells are made of Iodine and the antibodies attacking my thyroid logically would get worse if I added MORE iodine. I’d like to hear from someone with hashis or Graves got better with Iodine.

[Kimberly]

#1171078

All – I let the above post go through the moderation queue; however, please be advised that the Foundation does NOT advocate any “natural” or “alternative” therapies for Graves’, as *none* of the so-called “alternative” approaches have been proven to be both safe and effective.

There was an individual a few years ago who swore that a special nutritional supplement could “cure” Graves’ disease. Now, if you visit his web site, you see that it hasn’t been updated for around 5 years, except to add a disclaimer in red at the top of the screen, noting among other things, “There is no scientific proof that thyroid disease can be corrected nutritionally. The editor of this site is not a doctor and has no formal medical training. What works for one person may be dangerous for another.” My personal guess is that this disclaimer was added because someone tried his program and suffered serious, if not fatal, consequences.

Unfortunately, the Foundation and its volunteers have had contact with patients who became much more ill – and even patients who died – because they made the decision to reject conventional treatment. Remaining in a hyperthyroid state is a dangerous situation, as this can cause complications such as bone/muscle wasting, heart problems, and thyroid storm, which has a 20-50% fatality rate. There is actually a division of the National Institutes of Health that is called the National Center for Complementary and Alternative Medicine — and their mission is to look at alternative and complementary therapies from a science-based perspective. Hopefully, one day, we *will* have more concrete information on the effectiveness of alternative and complimentary therapies. For now, though, we are stuck with the three conventional treatment options for hyperthyroidism: Anti-Thyroid Drugs, Surgery, or RAI. All three options do have risks, which is why it’s important for patients to do their own research – but the risks aren’t nearly as great as remaining in a hyperthyroid state without treatment.

[Oberon]

#1171079

Thanks again for the responses. I found out recently that I have a friend who went through this several years ago. She was so symptomatic that her Endo did not give her a choice. She had RAI and had no negative after effects other than eventually going hypo. She takes the pill daily.
Being blessed with few symptoms makes the decision harder. Is a second opinion in order? My primary care and endo both agree on this dx and treatment. I think my hematologist appointment will steer my decision. If I can handle methimazole, then that is the choice. By the way I have an older cat who has been on methimazole for years. She has responded well so maybe I will too.

I was on a low iodine diet before my scan. Does anyone know if the prep for RAI is as restrictive? I am from Baltimore so my diet is usually seafood heavy. I have stopped eating seafood until I decide on treatment.
Does the radioactive dose depend on levels or just weight of patient? Will I get a lower dose than someone with really high levels or the same?

[Bobbi]

#1171080

It’s been quite a while since my RAI, but I think I had to avoid shellfish for a while before the RAI. The reason for this is rather simple: the only place in the body where iodine is used is thyroid cells, and it helps the RAI treatment to work better if those cells are “thirsty” for iodine. If they are loaded with iodine due to a high iodine diet, then less of the treatment form of iodine will make its way into thyroid cells. The RAI is very soluble in water, and any of it that doesn’t get taken into thyroid cells is eliminated from the body within a couple of days.

The RAI dose typically is determined by the level of hyperactivity — measured in the uptake test typically — and the size of the thyroid gland (not the size of the patient). The size of the gland has usually been determined by the scan done after the uptake. So, someone with a smallish thyroid, but a high uptake (as was my case) will have a smaller dose of RAI than someone with a lower uptake and a bigger gland.

[StephenE]

#1171081

I would like to comment on the above post on supplements. My sister-in-law is a Doctor of Oriental Medicine and also teaches at one of the schools on the east coast. I have had long conversations with her regarding this disease and treatment options. She has said there is NO Natural way to cure graves disease. What she has done for me is in collaboration with my local doctor, use various natural methods to repair the damage done by Graves and help strengthen the body to up the chances of remission and or successful RAI, if that’s the route taken. Remember pharmaceuticals react to various supplements and vitamins so communication with your doctor is critical.

[Oberon]

#1171082

So last night the symptoms seem to be worsening. Noticed a tightening in my throat. Still present today. Leaning towards RAI again if that will treat the goiter symptoms. What type of eye doctor is recommended before RAI? I am also noticing mild eye issues now too. I am trying to get a referral from my Endo. I am playing the front office game now. Passing messages and getting little progress.

[debbie12]

#1171083

I wanted to clarify what I posted about my Graves disease. Under no circumstances did I say that there is a natural “CURE” for Graves disease. There is NOT. What I wanted to point out is that in my experience there are sometimes other options than RAI. Which by the way RAI is NOT a cure for Graves disease either. MANY people who have RAI treatment end up with a Hypoactive thyroid disorder and have to take thyroid supplements with Proven ADVERSE side effects. If you RE READ my post my statement is that I have been able to “MANAGE my symptoms, which include taking a medication Propanalol in order to AVOID a dangerous situation. I have read many forums where people have lived with thyroid disorders for years and have not only avoided RAI and Surgery but have NORMAL thyroid blood tests and improved their health by changing their diet and adding a few supplements. I do not think this group of people should be disregarded. So let me add to my statement that it is a BIG decision no matter what the patients choice is. Some people may want RAI or surgery. They should be aware of all the pros and cons. But I believe that MANY people do not even know that thyroid disorders MAY get severe, and that they can swing like a pendulum from hypo to hyper. And that there is no real clear answer what even CAUSES thyroid disorders. And THAT is why I think this forum is so beneficial and wonderful. They get to hear from people who have EXPERIENCED thyroid symptoms because if you don’t have a thyroid disorder you will never understand how the person feels. Thank you for having this forum. It is extremely vluable to so many people including myself. Also I want to add that the SEVERITY of my symptoms has changed dramatically. It was almost like a deep dark depression when it came on. I was exhausted no matter how many hours I slept. I woke up tired with puffy eyes. I lost interest in everything. Forced myself to get through work, home to bed. Same cycle for MONTHS. Then – the FOG lifted a little at a time. I became clearer and less and less tired. Today I feel “almost normal”. I have slight goiter that I put castor oil soaks on when it feels larger and it goes down. I have no problem working. After work I take a short nap and I am back to a lite workout at the gym. On my days off I walk the dog for 2 hours (Initially I would get to the end of the driveway and turn back around). I was SURE my life would never be the same. Now I almost forget HOW BAD I felt. Of course for awhile as I felt better and better I was worried the horribleness would return. I feel the worst is over. Hope to continue to improve more OR even better have it go into remission. It did that before for 25 years after I stopped synthroid (which I took for 10 yrs for Hashimotos hypo) No rhyme or reason. I kept getting my bloodwork back NORMAL .For now I just hope everyone out there starts to feel better, regardless of the option they choose.

[beach45]

#1171084

When I listen to comments here and on other forums it sounds like I’m either going to get cancer eventually if I choose RAI or I’m going to go blind with my moderate TED. I have seen a medical report on cancer incidence post RAI and it was a very limited study group and the percentage was low. I do know of people who had RAI many years ago and no cancer, no eye problems and going strong. I know too possibly it depends on how much of the I-131 taken as I know cancer patients get a higher dosage than say Graves patients typically. I also know that a lot of people have thyroid eye disease and sometimes do not even know it and have problems post RAI and then I’ve heard of some who’s TED actually improved post RAI. I guess in a way it can be a risk with whatever choice we may make with treating this disease as even ATDs have some side effects which my doctors tell me are not very common especially at lower doses. Even thyroid surgery comes with its risks and being over 50 myself and knowing that I don’t fare well post surgery as I had a rough time after a surgery for months back in 2009, I get confused how to move forward. All I can say is to do as much research as you can as I have in 20 months of being on Antithyroid Methimazole (read medical journals, talked with regular and holistic practitioners, 3 endos thus far, have many books on Graves/thyroid) and try to make the best educated decision based on information obtained. I’ve also been advised by holistic medical practitioners that it is not wise to try to treat Graves by natural treatments and be careful with certain supplements and one of them is a nurse practitioner who believes more in natural means to treat disease in general! I don’t like to discuss the natural as I prefer natural yet I won’t go there with this disease as I know of people who died treating it naturally alone. I was lucky, I have some time to choose. Yet for myself I go with one of the treatment options ATDs, RAI or TT. I know others who stormed who did not have as much time to make a choice and had to have RAI as their Graves was severe. I wish all good luck with their decision making!

[Kimberly]

#1171085

debbie12 wrote:

I wanted to clarify what I posted about my Graves disease. Under no circumstances did I say that there is a natural “CURE” for Graves disease. There is NOT. What I wanted to point out is that in my experience there are sometimes other options than RAI. Which by the way RAI is NOT a cure for Graves disease either. MANY people who have RAI treatment end up with a Hypoactive thyroid disorder and have to take thyroid supplements with Proven ADVERSE side effects. If you RE READ my post my statement is that I have been able to “MANAGE my symptoms, which include taking a medication Propanalol in order to AVOID a dangerous situation.

Hi Debbie12 – For someone who is hypER, beta blockers can provide relief from symptoms such as rapid heart rate, tremors, etc.. However, beta blockers don’t treat the underlying hyperthyroidism. So a patient who is hyper and forgoes the three conventional treatment options for hyperthyroidism (Anti-Thyroid Drugs, RAI, Surgery) can still end up with complications, including bone and muscle wasting.

Until there are studies that show that a specific “alternative” treatment is both *safe* and *effective*, the Foundation will continue to direct patients to one of the three available conventional options. You are absolutely right that they all have risks — and that none of these 3 options treats the underlying autoimmunity. However, if you encourage patients who are hyper to forego these options, they might get really lucky and get better…but it’s much more likely that they will have serious, possibly even fatal, complications.

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