Thyroid Results - Suffered from Hyperthyroidism in past.

[Ricky007]

Hi Everyone.

In late 2013 I was diagnosed with Hyperthyroidism. My results then looked as follows:

Free T3 : 12.6 (pmol/L) (3.5 - 5.4 is normal)

Free T4 : 35.6 (pmol/L) (7.6 - 16.1 is normal)

TSH : 0.06 (mIU/L) ( 0.35 - 3.5 is normal)

I went on a six month course of Neo-Mercazole and after the cycle my results were within normal range. I then felt fantastic for the last year. I got sick with the flu about 4 weeks ago and it was severe. It was at the same time I started getting symptoms of Hyperthyroidism again so decided to go for another round of tests. These are my latest results.

Free T3 : 6.6 (pmol/L) (3.5 - 5.4 is normal)

Free T4 : 17.6 (pmol/L) (7.6 - 16.1 is normal)

TSH : 0.04 (mIU/L) (0.35 - 3.5 is normal)

Would appreciate some feedback on the results above, my FT3 and FT4 isn't as bad as what it was during the original diagnosis but the TSH is so I am suspecting that if I do nothing the T3 and T4 will go up again to where it was in 2013. Do you consider the above results as Hyper? I know the flu could have played a part which is why I am willing to consider another round of meds treatment instead of the RAI?

Should I consider another round of meds or should I go for the RAI treatment? Really don't want to play this Yo Yo game anymore but also don't want to be on meds for the rest of my life if RAI treatment goes south.

Thanks for any input. Really appreciate it.

[shaws]

Others who've been or are hyper will respond. I am hypothyroid. Do you have the ranges of your blood tests. The figures are usually in brackets - the reason being that labs differ and so do the ranges and it makes it easier to comment.

Dr Toft of the British Thyroid Association says:

5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.

"Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong. ".

Many of our members have had RAI and regret it. A few maybe o.k. but there's no concensus amongst Endocrinologists about prescribing thyroid hormones other than levothyroxine if you're not recovering on levothyroxine. They are adamant that levo is perfect. Even those of us who still have remnants of our thyroid gland have had some severe ill-health on levo only.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

[Ricky007 in reply to shaws]

Thank you so much for the informative answer. It really does make me feel that drug treatment is the best option. The one thing I can improve on is going for more regular blood tests (3 months instead of 6 months) to stop it in it's tracks when/if it comes back.

Apologies for not providing the benchmarks. Here they are :

Free T3 : 6.6 (pmol/L) (3.5 - 5.4 is normal)

Free T4 : 17.6 (pmol/L) (7.6 - 16.1 is normal)

TSH : 0.04 (mIU/L) ( 0.35 - 3.5 is normal)

Thanks again

[SmallBlueThing in reply to Ricky007]

I was asked to have blood tests every six weeks. It seemed to be a "three counts and you're out" process with free T3 rising above range. Unfortunately, I was lost to follow up and have since become hypothyroid, which again had three increases above range (this time of TSH) before treatment began.

Best wishes!

[Ricky007 in reply to SmallBlueThing]

Sorry to hear. Hope you are ok and dealing with it.

[SmallBlueThing in reply to Ricky007]

Thanks, it makes you think about the adequacy of communications from healthcare providers...

Resistant hypertension is now a major concern, but I don't know whether my hyper episodes were a factor.

I know of someone who wants RAI due to the 1% risk of losing his voice and someone else who had a thyroidectomy (maybe to avoid irradiating her family?) and undertakes long distance cycle tours every summer. Also a friend in Poland with a "Chernobyll Necklace" who was quite dopey when I visited, but now holds down a fulltime job.

[Ricky007 in reply to SmallBlueThing]

I do think the frequent blood tests will help in my case. I really don't mind the mercazole as I don't get side effects from it.

[Fruitandnutcase]

I've got Graves' disease and have been in remission for a couple of years. I know if I relapse I will definitely want to take antithyroid drugs again, I spoke to my GP and said I didn't want the RAI that the hospital had been offering me almost every time I saw an endo. She said I couldn't be made to have it and neither could they refuse to treat me.

I said ovbiously if I relapsed several times or became unable to take carbimazole then I would have to rethink but basically I wanted to carry on with block and replace treatment because I felt very well while I was on it.

The reason I don't want RAI is because I felt very unwell when I became hypo during my treatment and I don't feel confident that I would be given enough Levo to stay well should I become hypo.

Say that I'm sure there are lots of people out there who have had RAI / TT and who are well and very happy and hopefully you will hear from them too.

I have to say the same as shaws has said above - I am not a medical professional and my opinions are my own. Obviously there are people who have no option but to have RAI or a TT and if I were in that position I would do so too, it's just not a route I want to take at the moment. I think you just have to do your own research and then make your own decision either like me with your GP or without. Good luck.

[Ricky007 in reply to Fruitandnutcase]

Won't lie but what you are saying is music to my ears. I feel the same way. I do think that the flu had an effect on me relapsing so want to have another go and see how it goes on the meds. I also felt great on neomercazole, I didn't even need beta blockers whilst I was on it which meant my heart rate was normal and I didn't have anxiety.

Thanks for your reply. it really means alot

[Fruitandnutcase in reply to Ricky007]

Like I say I'm not medically qualified, deciding I don't want RAI unless as a very last resort was totally my decision.

Have to say I used to clutch my little notebook with all my test results and notes on how I felt after each increase in Levo etc plus the information about Dr Toft and people who had been on antithyroid drugs for extended periods of time.

I spoke to my GP about it because I didn't want to relapse because I was so stressed and worried about what *might* happen should I relapse. Once I informed everyone of my decision I relaxed and got on with things.

I think word must have filtered back to the hospital - I had been missed out for my final signing off visit and when I saw my doctor about something else she gave me the department phone number and told me to tell them etc. I stopped my block and replace in November 2013 and didn't get my final signing off visit until October 2014 so it was quite a while later than normal.

When I finally went for my signing off visit, apart from the very new junior endo not being able to understand why I was having my final check SO much later than was normal not a word was mentioned about RAI.

If it's any help make sure your vitamin D and B12 are at the top end of their ranges ( mine were pretty low so I supplemented) and that your ferrit and folates are good too (mone were fine) When I started on the carbimazole my pharmacist told me to be sure to take a high dose of vitamin C along with it so I always took and still do 1000mcg slow release vit C, as well as using a vit D spray and taking a daily sublingual Jarrow's methyl B12. I also tried to eat healthily, lots of fish, chicken, fruit and veggies etc. and I cut back on bread and potatoes although I didn't stop altogether. I take probiotics too to try and build a healthy gut because I think that is important too. Sadly though I never quite lost my chocolate habit back then (although I have now) but everyone has their little flaws don't they.

Hope you get back to your pre flu good health very soon.

[Ricky007]

So my doctor called me and basically said I need the RAI considering I relapsed after an 8 months course of carbimazole. I must say that I am not really impressed with the way he is dealing with my condition. I had to inform him who I was and how long I was on carbimazole even though he had my file in front of him. He is a physician so not a throat specialist. Think it's time to go and see someone who specialises in it.