# Wife being pressurised to use RAI rather than PTU



## tebee (Oct 18, 2012)

I've mentioned my Wife on here before, she had a bad Hyperthyroid episode and was diagnosed with Garves'. After some initial problems, mostly caused by a bad reaction to Methimazole, she was put on PTU and her levels returned to some more normals levels of T3/T4

However they reduced her dose last year as she was in danger of becoming Hypothyroid and in august stopped altogether.

Now she is finding the levels starting to creep up again and her last test showed Free T4 at 1.9 ( range 0.9-1.7) and Free T3 at 4.7 (2.57-4.43) T3 and T4 were within the range.

Her specialist refused to put her back on PTU, insisting she should have RAI treatment instead. When she said she wanted to wait - we would prefer surgery back in this country ( France) if thyroid removal becomes necessary, she is currently working in Thailand - he refused to continue treating her.

She feels this is because he will get a large fee from the hospital if she has the expensive RAI procedure, but only a small fee for the consultation otherwise.

Are there any reasons she should not start PTU treatment again ? She has joint pain, but has had this since the original hyperthyroid episode, pre-dating the start of using PTU. Her only other major problem has been some weight gain and having cold intolerance, but I think this is just her metabolism slowing down to normal levels.

She had difficulty finding a specialist she liked, but does not want to be pressurised like this. I am not impressed with the quality of the specialists there. She went to see a new one who insisted it was Hashimoto's not Garves' that she was suffering from. Her TSH is very low though ( <0.01 on the last test, range 0.7-4.2), I am right in thinking with Hashimoto's this should be high?

Tom


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## HotGrandma (Sep 21, 2012)

Hey Tom. This is not an easy disease. Has your wife had any antibodies tested? How long was your wife of PTU? If the antibodies were not in range when she stopped PTU her chances were slim to none of remission.


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## Andros (Aug 26, 2009)

Long term use of any anti-thyroid med could damage the liver. I suspect the doc may be protecting his liability. That said, if your wife could do anything at all, surgery would probably be the first best options w/o RAI coming in second place.

The liver is not the only organ that can be permanently damaged on the long haul. Cannot your wife take a medical leave?

Many hugs to "both" of you!


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## tebee (Oct 18, 2012)

Yes we realized the remission was probably only temporary. Her antibodies are all high, especially Anti-TPO which was in the region of 3600 against a range of <12. But she had been on PTU for less than 12 months. They had reduced her dose to 100mg a day but had to suddenly stop it when she became slightly hypo at the beginning of August - Free T4 was 0.8 ( range 0.9-1.7) and Free T3 2.44 ( 2.57-4.43)

I'm just unsure why she can't continue taking ATM now her levels are starting to rise again.

I think her taking medical leave would be the best plan, she is in the health system here, so would get it done free, but there is no guarantee the doctors here would want to take the same course of action and we stated a new business up end of last year, with the idea that she would be able to spend more time over here when her current contract ends. If we abandon that now we stand to lose much of the money invested and we can't really afford to have her not working as we have little spare capital now. However as I've pointed out to her, it's better to be alive with no money than the other way around.

It's just all come at the wrong time, but then doesn't it always ?

Main thing we are worried about is finding another good specialist, She is a Dr herself so can prescribe and order her own tests, but this is a long way outside her field of expertise, but at least she is able to read medical literature and understand it - I'm dragging some of my bio-chemistry knowledge from the recesses of my brain, not used it since I was at collage 40 years ago.

She's not due back for 3 months, so as long as she does not get markedly worse before then, we may just wait and try and find someone here when she returns, but she's only due to be here for a month so there is not a lot of time.

Tom


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## HotGrandma (Sep 21, 2012)

Tom. Hopefully your wife has researched nutriton and vitamin deficiences for persons with graves. The antibodies thrive on stress. Stress also depletes how our bodies utilize nutrients. It is so important to avoid stress physically and mentally.


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## Airmid (Apr 24, 2013)

You are very right about the Hashimoto's, the TSH should be high. TSH that low (and that is really low) should indicate Graves. I can see why they decided to stop the medication based on her last labs as she was starting to become hypothyroid due to them which is another extreme.

I cannot even begin to imagine the frustration here. If she's due back in 3 months is that when her contract ends or does she have to go back over again? If her she has to go back for a little while longer then, and this is only me personally, I would take medical leave and at least see what the doctors back home have to say. If her contract is up in three months, and with her being a doctor, I wouldn't say it's a horrible idea to wait provided she has regular labs to check to make sure things aren't going to get bad for her again. It's such a delicate situation, as if things get bad again she may well end up feeling pressured into a something she's not comfortable with.

In the end, no one wants to be pressured into a procedure. While it's easy to say to ditch the doctor doing that, it may not be feasible if the area she's in is severely lacking in those specialists. It might be possible to find a good Endo in France and see if they are willing to look over her records and give an idea on their own treatment plan. I know several highly regarded specialists over here in US will do that for patients that are looking for a second opinion. It might be hard to get her medical records transferred between the two countries but the hassle may very well be worth it if it offers peace of mind to you both.


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