Anybody : Hi all. I've been diagnosed with t... - Thyroid UK

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Fiaxseed profile image
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Hi all. I've been diagnosed with t3 thyrotoxicosis due to autonomous nudule/s. Been on 10mg x day for 12 days now. Wondering why I'm so tired and depressed. Cheers.

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Fiaxseed profile image
Fiaxseed
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Greekchick profile image
Greekchick

Hello! Sorry to hear you are feeling so awful.

For us to help you, we need to see your blood work results of your latest blood tests. This would include at minimum all your thyroid readings (TSH, T4, T3 and all thyroid antibody tests that confirm your condition).

If you search for SeasideSuzie, greygoose, or SlowDragon on the site, you will find lists of all the tests they like to see in order to help you understand why you feel so bad.

I have Graves’ disease (autoimmune hyperthyroidism, which is what you have) and until my TT 13 weeks ago, had a toxic multinodular goiter. It is not unusual for hyper patients to feel exhausted - and if the carbimazole is working, you may already be hypothyroid - and thus, you may feel depressed if your carbimazole dose is too high. The only way to know this is to see your latest bloodwork.

Do you also have a goiter? Have you had any nuclear scans? Do you have those results as well? Have you had an ultrasound? Can you provide the specifics? Do you have swelling in the neck?

Please post your results (with the ranges next to them) without any personal identifying information.

Wishing you all the best and sending positive thoughts your way.

Greekchick profile image
Greekchick

So Sorry, here is correction to my post I don’t know if you have Graves - I meant you have hyperthyroidism - typing too fast on iPad!

humanbean profile image
humanbean in reply to Greekchick

To edit your own posts there is a help topic on it :

support.healthunlocked.com/...

Greekchick profile image
Greekchick in reply to humanbean

Thanks so much!! Will do next time .

SlowDragon profile image
SlowDragonAdministrator

Do you have blood test results and ranges from before starting on carbimazole?

Most importantly did you have TSI or TRab antibodies tested for Graves' disease

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's and Graves. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Fiaxseed profile image
Fiaxseed in reply to SlowDragon

Thank you and hello. On starting carbimazole my tsh 0.008. Ft4 normal. Ft3 7.0. Have no antibodi es. Toxic multnodular goiter. A scan was done 2 weeks ago. I see the specialist in 2weeks. 3options:carbimazole for rest of my life (I'm 74) radioactive iodine or surgery. This problem started 2years ago after a doctor sent me for a ct scan. The iodine contrast made me hyper because I had a goiter and nodules. It settled down after a short course of carbimqzole the first time now its come back. All other blood tests done before I started carbi were normal. Trans are being done again in 2weeks. Thank you for reading. I'm so glad there's somebody out there.

Fiaxseed profile image
Fiaxseed in reply to SlowDragon

Report says hyperthyroid due to autonomous nodules. And also added that functioning neoplasms can produce this pattern. I was sent for nuclear scan and then started carbimazole. Dont know results of scan done on 7 may. Won't know til I see specialist in 2 weeks. Can my ft3 be down after 12 days on 10 mg carbi ? It sure feels like it. Kind regards. I've given more info below. Hope you are well. X

Greekchick profile image
Greekchick

Hi again Flaxseed,

You have provided lots of information - and that’s great. You didn’t supply the exact readings for the antibodies, but I will assume you were told you do not have Graves - please confirm this. I am assuming you had fine needle biopsies that also showed benign nodules and no cancer. My history - I had a toxic multinodular goiter with autonomous nodules as well as Graves.

So you have some tough choices to make here. Let me briefly share my experience with you because I faced the similar choices last October as I was already on Tapazole - but ultimately, the choice was made for me because I needed surgery urgently as my situation changed in the space of 1 month. Depending on your results at next visit, you do not need to rush into either RAI or TT - and you should not rush into anything. I am not a doctor - so what I say below is based on my personal experience.

With respect to staying on carbimazole forever, it will depend on how well you tolerate the drug. Not just feeling tired , but also whether you have lowered white blood count or change in liver function (I.e toxicity) while on the drug. I am 63 year old female and I was started on Tapazole at half the normal dose (I live in Canada) which controlled my disease for 2 years before I became resistant to it. I did not have any side effects at all - and always had normal blood work with respect to white blood count and liver function. My endo was prepared to let me stay on it long term since I had good tolerance to it and I did not become hypo.

If your bloods do not show normal and you develop problems, then you will not be able to stay on it forever - and you will have to examine options 2 and 3. Your results for this will be key in figuring out where you go from there. You can’t decide anything until you see how well you tolerate the drug. Also, even if your F3 is low, that can be dealt with if all the other critical tests are normal.

Now if you are faced with RAI or surgery, I can tell you that most people on this forum who had RAI wish they had surgery instead. Please see posts by pennyannie, who has described in detail her experience with RAI - and who was not given a surgical option.

There are many issues with RAI - I refused it 2 years ago because my goiter and nodules were so large I did not want all that dead tissue in my body and then having the possibility of my Graves triggered by the leftover tissue while waiting for the thyroid to die off. Hence the Tapazole for me. (RAI can be a very slow process - can take from 3 months to 3 years for thyroid function to die. (Also, research suggests that if you need surgery after RAI , your results will not be as good as if you never had RAI).

One of my nodules (the cold one) doubled in size and my goiter was compressing on my vocal cords and windpipe. This happened very quickly. I did not have cancer, thankfully, but it was so big that the thyroid simply had to come out. So surgery was not optional.

Now - surgery as a choice. It is not one I would have taken had things not been urgent. The major risks include vocal cord damage and damage to the parathyroids as the most serious, among others. You need a skilled thyroid surgeon who does a minimum of 5 thyroid surgeries per week - and should have an audited error rate of less than 1%. They must use a vocal cord monitor during surgery NOT OPTIONAL.

Adjustment to meds is difficult after surgery and after 13 weeks I am still not there but improving and getting there.

Recovery for me was slow - but I had a superb thyroid surgeon and I had no complications at all, so I was very very lucky. It is not a simple surgery and do not believe anyone who tells you “you’ll be fine in 2 weeks and all you need is Synthroid for the rest of your life.” I am still not back at work as meds are not balanced yet and stamina is not there. Also, I don’t know the state of your health in other ways and can’t say what other risks you would face in surgery.

What to do? Do not rush the decision. See all your blood work and forestall any permanent decisions until it is clear you can’t stay on carbimazole at least for the next little while if not longer. If you have no compression in the neck - you do not need to rush into anything. I had my condition for 25 years before a decision was forced on me and managed it well (I was only on Tapazole for the last 2 years).

Do I wish I still had my thyroid? You bet, every day. Life is not the same even though I am improving. And I am still fresh from the experience and grieve its loss - I am not over that yet either.

I wish you the very best with what you are facing. Your choices are tough - but I don’t think you are there yet having to make the latter two. Take your time - thyroid conditions move slowly and unless something changes as in my case, there is usually no urgency. Even thyroid cancer can be a wait and watch situation - so don’t let anyone rush you. Sending good wishes and positive thoughts your way.

Fiaxseed profile image
Fiaxseed in reply to Greekchick

Yes you are right. Full bloods will be done on 3rd june. Won't worry til then about options 2 and 3. I read up on carbimazole and its effects. So good to hear from you. They said I had so many hot and cold nodules they couldn't biopse all of them just the big one and that was a colloid. Surgery was recommended 2 years ago. But I didn't want a lap-band surgeon to do it so I declined. I live in Australia and I will keep you posted if I may. Best regards and take care.

Greekchick profile image
Greekchick in reply to Fiaxseed

Please keep me posted and reach out anytime . I’ll be delighted to help if I can. All the best.

Fiaxseed profile image
Fiaxseed in reply to Greekchick

Hi greekchick. I went to see my go today. One of the glands at the side of my neck was a bit swollen and sore. My gp didnt know I had thyrotoxicosis and a multinodular goiter. A gp at the surgery had filled for him that day. That gp referred me to a thyroid specialist because he noticed on computer that my tsh was low and my ft3 a bit high. My regular go I saw today didnt even know I'd been referred there nearly 3 months ago. He didn't know I'd had a nuclear scan at the hospital over 2 months ago. He didn't know I'd had full blood tests there as well. (All under the thyroid specialist ) he didn't know I was on carbimazole and have been on it for 7 weeks. He didnt know recent blood tests showed my ft3 had dropped or that I had another appointment with the thyroid specialist in 6 months time. He doesn't know all blood testing came back very good. I still Dont know what the swollen gland is next to my goiter. Come back in a month said. Jeez

Greekchick profile image
Greekchick in reply to Fiaxseed

I’m so sorry to hear that. Are you on carbimazole now? If yes, and you have tender lymph nodes, I will advise you to call 111 - you may have an infection and this needs to be attended to. Or, go back to clinic and tell them that one of the side effects of carbi is swollen lymph nodes which I suspect you have if you are on carbi now (elevated white blood cell count) and you need to be attended to immediately.

If you are not on carbimazole, then it’s not as urgent and play it by ear - see how you feel - and if there are any changes, don’t wait.

Post and let us know how you do. All the best.

Fiaxseed profile image
Fiaxseed in reply to Greekchick

Yep been on for 7 weeks . I need blood count cheers.

Fiaxseed profile image
Fiaxseed in reply to Greekchick

Hi Greekchick. Blood perfectly normal. I must say that when we're sent to a specialist for testing and diagnoses its a good idea to get copies of all those tests and medication because there's no guarantee your go will get them when he needs to treat you. 7 weeks without those reports/test results is hard on the patient. Regards. X

Greekchick profile image
Greekchick in reply to Fiaxseed

Hi Flaxseed,

So glad all is normal ! And I think you are right about going with all your info to the doctor too - that way you get better care and don’t wait 7 weeks.

Wishing you all the best and that things go well on your carbimazole treatment and stay controlled. All the best to you.

Gingernut44 profile image
Gingernut44

Hi Flaxseed, I agree with Greekchick - I was diagnosed with a multi modular goitre and was put on 40 mg Carbomazole eventually reduced to 10mg. I was told that my options were TT or RAI which I think was down to the cost (was told Carb was very expensive and I couldn't stay on it for more than a year and, no, I didn't have any problems with bloods apart from thyroid). I was tolerating it very well. I wish I had known about this forum then as I would never have had the RAI - I've been on a downward spiral since last March when I had it (I was 73 then). Don't be rushed into anything - they think all you have to do is take Levothyroxine and that's you sorted 😣

Fiaxseed profile image
Fiaxseed in reply to Gingernut44

OK GIngernut I won't be rushed. So glad I found this forum. To hear from people like yourself who have been there and done that blows my mind. Please know how happy I am to reach you.

pennyannie profile image
pennyannie

Hello Flaxseed

I don't know if I can offer any other information except please do not have RAI treatment., and if at all possible please keep your thyroid.

I have no knowledge of your particular medical issues so can't help there.

I read of people on anti thyroid medication for years and this would be the safest option.

Otherwise surgery has to be the next option. It's clean, precise and contained.

RAI is a toxic substance that you drink, so it doesn't just go to your thyroid, and is also taken up by your gonads, gastric, parathyroid, salivary, pituitary, adrenal glands and skeletal muscle.

There might also be nasal dryness, nephritis and sicca syndrome similar to Sjogren's Syndrome.

After RAI treatment hypothyroidism is more " challenging to treat " !!

After RAI treatment there is an increased risk of developing fibromyalgia like symptoms.

After RAI treatment studies also show an increased risk of cancer, especially of the thyroid and small bowel.

I could go on, and on, but why do the medical profession talk of this option which can have such dire consequences on the patient ?

It's the cheapest option for the hospital, probably just an outpatient appointment and a discharge back out into primary care.

It's also probably a game of percentages, as 1000's of patients appear ok after RAI.

I have Graves Disease and had RAI treatment back in 2005. I became increasing unwell about 5 years ago but found no help, understanding or acknowledgement within the NHS.

I have learnt of my health issues back to front, and have known symptoms of some of the issues as detailed above, and trust there are no more for me to experience.

Greekchick profile image
Greekchick in reply to pennyannie

So glad you answered Flaxseed- I told them to find your posts - you say it better than anyone re: RAI. Hope you are well and best wishes!

pennyannie profile image
pennyannie in reply to Greekchick

Yes, I saw your post much earlier today. I should have answered immediately because I forgot and then when I remembered couldn't find the post, 'cept by going back into your replies !!!

Never been so famous for doing the wrong thing and drinking that ……. .

Yes, I'm getting on ok, thank you, - figured you are still recovering as you seem to be keeping busy on this website, helping others.

Hope all is going well for you - sending a hug -

Greekchick profile image
Greekchick in reply to pennyannie

Hugs right back at you! I look forward to reading your posts and am glad you seem to be doing OK these days . I am doing better and trying to pay it forward when I can ... I’m on a decent dose of Synthroid and now on Cytomel - big improvement - I do feel better - but still a ways to go ... I try to stay optimistic because otherwise, as a friend of mine says, “I’m on a train that stops at a very bad station - and I shouldn’t get out there”! Stay well and 🤗🤗🤗!

Fiaxseed profile image
Fiaxseed in reply to pennyannie

Hello pennyannie and thank you. They made rai sound so simple at hospital even described it as a 'wonderful treatm ent' but I always suspected a catch. Cheap yes. Simple to give yes. But no....I wont give up my thyroid without a fight. I hear you. When all my tests are done I"ll post them on here. Thank you and everybody on this forum who replied. Stay well. Best regards. X

pennyannie profile image
pennyannie in reply to Fiaxseed

Hello again,

I think if you can strip out the emotion in all of this, the fact is they are paid to do a job. That entails following guidelines and getting patients through the system as quickly and efficiently as possible, and out patient waiting times are target driven, and not patient centred or focused.

It's a horrible time, when ill and vulnerable to be presented with medical issues you're probably not knowing enough about to even question the medical profession treating you.

We believe they have a duty of care, and do no harm, but they can't be emotionally involved, if they were, they couldn't do the job.

There is very little continuity of care, they may never see you again, and you are simply a time slot on a patient list, you are 3.15 on the 24th ????

I'm sorry if that sounds a bit cynical, but it's my experience these past few years.

Just thinking, if the question of RAI comes up again, maybe ask if they would take this form of treatment themselves ?

Keep in touch - keep strong - xx

Fiaxseed profile image
Fiaxseed in reply to pennyannie

Yes. Absolutely right and Dont worry. I'll be asking that question on 12th of June. And I'll also be asking: what surgeon would you choose to cut yours out? Ha ha . best regards.

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