[Ski]

#1062215

There aren’t that many people who need to do it a second time, they are definitely in the minority, and shrinking all the time, since the newest conventional wisdom is to aim for an ablative dose. For some years there were doctors who believed they could hit "just right" instead of compete ablation, so there’s your collection of people who needed it done twice (I am one ~ I had decided upon an ablative dose, as had my endocrinologist, but no one shared that with the radiologist…).

There are still endocrinologists who do not know the latest on the subject, and will sometimes go along with patients who believe this could work out, so there’s another group of people who likely need some other treatment later on, but again, the news is getting around.

Now that the goal is commonly ablation, there are far fewer "2-timers."

[Kimberly]

#1062217

Hello – I’m not a doctor, just a fellow patient, so I can’t speculate on what might be causing your symptoms to flare.

A recent article in the New England Journal of Medicine about RAI notes that re-treatment might not be necessary if “the degree of hyperthyroidism is “minimal” after three months. The author states that if this is the case, levels might slowly approach the normal range on their own. However, only a doctor can make the call as to whether hyperthyroidism is “minimal” – so it would be worth visiting a specialist to help you determine next steps.

[MNMama]

#1062216

Well, I have just hit my 6 month mark post RAI on July 29th, and just got my results back, I am still hyper, although still dropping. My Free T3 has taken it’s biggest jump down since April. Anyway, My PCP has referred me to second endocrinologist in Rochester. I am sooo confused by this disease! I was expecting my Frees to be higher again, as I have been having more heart palps and rapid heartrate again where I have to take a whole atenolol per day, but my numbers dropped! When my numbers were higher in April and May, I could get by on 1/2 pill per day. Makes no sense to me. I also had an anxiety attack in the doctors office when getting my blood taken, never had anxiety before when my numbers were off the charts…. Sleeping has been changing again too, I seem to wake up frequently again during the night BUT nothing like when I had total insomnia back in December and January.

Here is my lab history: My labs ranges are: Free T3 (2.0-3.5) and Free T4 (0.55-1.12)
Free T3 has gone from: greater than >28.0 to 15.9 to 11.9 to 9.4 to 9.6 to 9.1 to 8.4 and is now at 6.3
Free T4 has gone from: 5.33 to 3.29, to 2.96 to 2.59 to 2.27, to 2.31 and now is at 2.25

Could all of these weird symptoms again be because my numbers are dropping? So confused with this latest Free T3 drop, I am tempted to tell my PCP to cancel the endo appt. because I cannot afford it, and just see if I eventually get there… Has anyone taken longer than 6 months to get even into the normal range? I will let you know what the endo says, My appt. is this Thursday.

[MNMama]

#1062218

I have a question for all of you experts out there. I just got the results from my latest bloodwork. I am now 7 months post RAI. My doctor ordered a Total T4 this time for some reason (it could have been a mistake) since I have ALWAYS had the Free T4. But anyway, the Total T4 came back at 10.2 (ranges of 5.0-12.5) this is Normal.

The last 2 weeks, I have been feeling really "weird" like spacey, floaty, just strange in the mornings. These feelings seem to subside by noon. I have also been waking up frequently during the night, headaches, arm muscles ache sometimes, HEARTBURN where I just got put on Aciphex because I was just told I now have GERD.

So, my question is do the total T4 and Free T4 kind of co-inside? I mean if my total T4 is showing normal, could my Free T4 still be high if they would have done the correct test or would that have been normal too??? Or should I just be happy to hear the word normal? lol –

Also, should I request a TSH test be done since it’s been 7 months since RAI and see if it has come out of the "undetectable 0.01 range" ? Thanks in advance!!!

[Kimberly]

#1062219

Hello – Certain substances, such as birth control pills, can “bind” thyroid hormone, thus making it unavailable for the body’s use. Therefore, Free T4 should track more closely with any particular symptoms you are feeling than Total T4.

It would be nice to get the TSH test done just to see where you are, but the Free T4 is going to give you better guidance right now for dosing decisions. The American Thyroid Association and American Association of Clinical Endocrinologists now recognize that TSH has limited value for patients who are working to get their thyroid hormone levels stabilized after diagnosis.

Any time you feel a major shift in your symptoms, it’s worth a call to your doctor’s office just to see if they might want to run labs sooner than your next scheduled appointment.

Hope you get some relief soon!

[MNMama]

#1062220

Hi all, I am just updating. I went for my second Uptake and Scan yesterday (I am 9 months post RAI #1). This time I had a 24 hour uptake (in Jan. I had a 4 hr. uptake). Anyway, I am sitting at 61% and am scheduled for my second RAI on Oct. 20, next Thursday. They said they are going to give me a higher dose (maybe 15 mci) as my gland is still quite active. My endo said that my goiter was just too huge to take care of it all and my numbers were just too high, so a second treatment is not too unusual in those cases. I am currently sitting at TSH < 0.1, (Free T4 is 2.09 (0.55-1.12) and Free T3 is 7.0 (2.0-3.5), I have come along way from where I was in January, but just didn’t quite make it to normal levels. I just can’t wait to get all of this behind me, my heart was good in September and was only needing beta blockers about 4 times a month, and just a tiny bit. But now, I am needing them daily again…. I will keep you all updated on my second treatment, they are expecting me to go hypo fairly quick and the endo has me scheduled for a followup in 6 weeks post, but said to call her sooner if I am tired, cold and slow. Oh, and my endo also had me visit with a graves opthamologist about my eyes, I personally think they are ok, MUCH better than when my Frees were so high, but my vision prescription just keeps changing…. and they said I may have to quit wearing my contacts and go to 100% glasses.

[MNMama]

#1062221

Hi all, just wanted to fill you all in on how I have been feeling since my second RAI treatment about 2 1/2 weeks ago. Last week, for maybe 5 days, I felt PERFECT, and I mean PERFECT! Well, now I am noticing some things going on. First off started with slight constipation (not bad, just different), last night I had ankle pain in my right ankle, today my lower back hurts, stiff and achey around into my hips. MY eyelids are very puffy in the morning and so are my fingers, they do subside as the day goes on but definitely noticeable. My appointment with the Endo. is not until after Thanksgiving (6 weeks post RAI) but she said I could call sooner if I feel tired, cold and slow. I don’t have those symptoms yet, but these aches are annoying! I am going to wait a week and see if it continues and go from there, but all in all, feeling great! LOVE not having to take the atenolol anymore, my heartrate is back to normal and so is my body temp.

[MNMama]

#1062222

HI ALL!
Well, I’m happy to report ( I think….) that I am now hypo after my 2nd RAI treatment, and it happened in 3 1/2 weeks. I was smart and noticed the "unusual symptoms" called the endo, she had blood done and these are my NEW results.
TSH is NORMAL at 0.3 (0.3-5.0) and my Free T4 is LOW at 0.46 (0.55-1.12) now she did a TOTAL T3 which is LOW at .56 so I don’t have the ranges for the total, as I have always had FREE T3 done, but she said they have been having problems with that test lately, so went with this one….
ANYWAY, tomorrow I start a bluish, purplish pill (generic levothyoxine) of 75 MCG and will be retested in 4 weeks. I am to call her if I experience hyper type symtoms again OR if I feel worse hypo symptoms, but she sees me dropping even more and said my dose for my weight should be 100-112 mcgs so we will start here and go from there in 4 weeks according to labs at that time. What do you all think of this starting dose and the 4 week lab check? My symptoms are not bad, major muscle cramps at random times, puffy eyelids and fingers, HEAVY monthly friend that has visited me again this month (grrrrr) and starting to feel cold and shivery…. otherwise, energy is still good, but I hope I didn’t just jinx myself by saying that….. Comments welcome on my new journey of replacement meds., I have a feeling I will be needing you guys alot in the months to come! Is 75 mcg a typical starting dose, I know she was contemplating 100 mcg as a start, but then changed her mind….. scared to pop that pill in the morning for some reason, but I’m gonna! lol

[Bobbi]

#1062223

How you take the replacement hormone is important. You need to take it first thing in the morning, on an empty stomach, and then wait a minimum of half an hour before eating anything. And it is supposedly best to take it with a significant wash of water. What that does is move the pill right along into the intestines, where is starts getting absorbed into the blood, BEFORE any food comes in. There are elements in foods (typically things like iron, especially) which can bind with the replacement hormone molecules and prevent them from being absorbed into the blood. If you eat too soon, there can be fluctuations in the amount of hormone that makes it into your body, each day being potentially different. By waiting before you eat, you make sure that a consistent dose goes in, and this, in the long term, will make it easier for your doctor to figure out what dose of replacement you need. Also, separate your replacement pill and any vitamin or calcium supplements by at least four hours. Same reason.

Wishing you good luck, and good health soon.

[MNMama]

#1062224

Ok, first day on this medicine and I cannot say that I like it. 45 minutes after taking it, I felt like I revved up, jittery. I could deal with that and it was gone in 4 hours. Now, tonight, I feel like my strong heartbeat is back at 76 bpm and it has been nice and mellow for 2 weeks running at 68 bpm. Hmmmm, this is only day one at 75 mcg. Is this common, will it quit if I am so low with my Free T4 why would my heart be acting like I am hyper???? Confused.

[Kimberly]

#1062225

Hello – Hopefully, you will hear from others who are on replacement hormone, but my understanding is that it takes the body some time to adjust, which is why doctors usually start with a little lower dose and then work up as needed.

[Author]

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