Advice on what to ask Dr

[MAB5]

I hope that soon I will get an appointment with the only specialist in my area. I am not sure what to ask. I quit smoking after 40 years July 23 after 3-4 weeks felt so bad that my GP ran an EKG and on September 26 I was admitted to hospital because he suspected heart trouble. I had a full cardio, all good, checked my blood work on my last day and said that my thyroid levels were crazy high and yes, this explained all my symptoms. Was given meds, sent to my GP for referral and am waiting. I don't know any levels but would like to be prepared on what to ask. My GP said no worries, RAI and then hypo. I disagree that this is my option. Any Advice?

[humanbean]

There are other options for hyperthyroidism than RAI.

You could take Carbimazole, which is the commonest treatment I'm aware of for hyperthyroidism. For some people who don't tolerate the Carbi there is another option called PTU.

imperialendo.com/for-patien...

I have read that destroying the thyroid with RAI is often the first (!) step in treating hyperthyroidism in the US, which to me sounds sadistic or defeatist.

In many parts of Europe people are given the opportunity to try and bring the thyroid under control with Carbimazole or PTU. Once this has been achieved the drug(s) are given in decreasing amounts while still keeping the thyroid levels as healthy as possible.

Some people do manage to get their hyperthyroidism to go into remission and come off drugs entirely. And those that don't may manage to keep the thyroid under control by taking a very small dose of antithyroid drugs. Some people stay on low doses of antithyroid drugs for years.

Doctors think hypothyroidism - the condition you are likely to end up with after RAI - is no big deal and is easy to treat. You can easily read lots of posts on this site that will tell you that hypothyroidism is a) often not well treated and b) can destroy quality of life.

Don't agree to taking RAI while there are still other choices that haven't been tried. And don't rush to making a decision. You can't undo RAI once it is done.

And I think that RAI increases your risk of getting Thyroid Eye Disease (TED).

Some links you may find usefull :

elaine-moore.com/Articles/G...

elaine-moore.com/Blog/tabid...

elaine-moore.com/Articles/G...

Hope this helps.

[humanbean in reply to humanbean]

Edit : You may find this of interest :

medscape.com/viewarticle/78...

Article title : Management of Graves Disease: Shift Is Occurring

Subtitle : A 2011 Survey of Clinical Practice Patterns in the Management of Graves' Disease

[MAB5 in reply to humanbean]

Oh wow, thank you for the information. I have no intention of doing the RAI treatment but yes in US that is the answer. I have heard that the Dr I will see is very thorough and a great dr. I would rather control my thyroid than kill it.

[humanbean in reply to MAB5]

I agree with greygoose and SlowDragon that it is imperative that you find out whether or not you have hyperthyroidism before agreeing to any treatment. Doctors will assume the patient is hyperthyroid when they see a low TSH or high levels of thyroid hormone but there are other causes of low TSH and high thyroid hormones than hyperthyroidism.

Low TSH can occur with :

a) Hashimoto's Thyroiditis

b) Graves' Disease

c) Nodules or cysts in the thyroid pumping out thyroid hormones

d) Secondary or tertiary hypothyroidism (collectively known as central hypothyroidism)

e) For other reasons that might not be identified.

f) There are conditions unconnected to the thyroid which can damp down the production of TSH, although they might not suppress the TSH completely e.g. high cortisol.

g) Other conditions I know nothing about.

High thyroid hormones can occur with :

a), b), c), and e) above, plus very likely g) as well

When you have a definitive diagnosis, write a post saying what tests you've had, and what the results and reference ranges were. Tell us the diagnosis and what treatment your doctor suggests.

You might find this post from another forum to be helpful :

forums.phoenixrising.me/ind...

Treatment of the thyroid is not as easy as doctors would have patients believe, and they are far too ready to take life-altering actions in connection with the thyroid because they think hypothyroidism is not serious.

[MAB5 in reply to humanbean]

I will get more results and post what I info I get. Thanks again for your help.

[helvella Administrator in reply to humanbean]

humanbean,

In the USA they use Methimazole rather than Carbimazole - though Carbimazole converts into Methimazole very quickly in the body so the end result is pretty much the same. No, I don't know why the difference in approach.

[humanbean in reply to helvella]

Thanks for the info. I'm shocked that the difference in approach is likely to lead to more people with suspected hyperthyroidism losing their thyroids in some way in the US.

I usually associate the USA with having more options than we do here in the UK, rather than the other way around.

[greygoose]

Did they test any antibodies? Before starting any treatment, or making any decisions, get your antibodies tested to prove you have Grave's. It is not a solid, reliable diagnosis, if they don't do that.

[MAB5 in reply to greygoose]

No sure yet to see the specialist, so I am told she is really good. I will make sure that the antibodies are tested. I am to pick up my records from my GP so hopefully I will know what the blood tests revealed.

[greygoose in reply to MAB5]

That's good.

[SlowDragon Administrator]

Usually it's HYPOTHYROIDISM (Hashimoto's) that starts after stopping smoking

It might be Hashimoto's (hypo) not Graves (hyper)

You need antibodies tests to confirm

Graves is confirmed by TSI antibodies

Hashimoto's is confirmed by TPO antibodies

verywell.com/does-smoking-c...

thyroiduk.org.uk/tuk/resear...

It's not unusual for doctors to muddle the two up

[MAB5 in reply to SlowDragon]

I hope to find out for sure soon and I'll make sure to test the antibodies. The hospital Dr just said that my thyroid levels were 'crazy high'. My GP said hyper but he is no expert on this, his words! I was given a prescription for a beta blocker and meds for hyperthyroidism at the hospital.

[Hidden]

Hi mab5 🤗I’m your Floridian friend from quit support .

I’m getting my totals after quitting for the first time tomorrow 🤞

Ive been hypo for 3 years I have hashimottos even before I quit smoking. Is not easy and I can only imagine what you are going trough with all happening at the same time 😔

For now is good that you are here with all the experts ..I’m on NTD I’ve been told is better ..I’m sending you very positive vibes xx Karina

[MAB5]

Hello Karina, thanks for the support both on quitting and this thyroid thing. I hope your levels are perfect!