# Doctor is confusing me



## Jo853 (Aug 16, 2013)

Hi

I had my appointment with my doctor today to discuss me possibly starting T3 treatment due to my lowish FT3 at 4.0 (3.1-6.8) but the copy of the blood tests I had done along with no complete relief of my symptoms were not enough to convince/enlighten her with my assumption that T3 medication could be what I need.

- She has previously agreed that I have autoimmune thyroiditis (the endo has said I have confirmed Hashimoto's)

- She has gone against what my previous doctor has said about me having psychological depression and that it could be hypothyroidism-related, and instead said that even if it is psychological depression the Citalopram I am on will take a while to work and if I still have low mood within the next 4 weeks she wants me to see her to discuss other alternatives.

- She agrees that all results done through the private lab are normal despite me having almost positive Thyroglobulin antibodies (103.5 with normal range 0-115) as well as Thyroid Peroxidase ones (33.5 with normal range 0-34), a barely suppressed TSH (1.87 with normal range 0.2-4.2) and lowish FT3 levels (4.0 with normal range 3.1-6.8). I thought this doctor was someone who did her homework on autoimmunity and as a result would know something about T4 to T3 conversion.

- She has therefore said that the endocrinology department is better clued up about the T4 to T3 conversion issue and has said this is something that should be brought to their attention.

- She has written on my sick note "acquired hypothyroidism", not "low mood" or "anxiety symptoms" as the doctor before her has written. Then surely she does not think I am euthyroid? Yes? No? I'm confused. :sad0049:

- She made no mention to the fact I have almost positive antibodies in both Thyroid Peroxidase and Thyroglobulin, which shocked me as she has always maintained I have Thyroid Peroxidase antibodies, not Thyroglobulin ones.

- She now thinks that I am doing ok on the 100mcg thyroxine despite the radiographer saying I am not on a high enough dose and that only ONE symptom out of several I experience is not as frequent since being on the thyroxine.

So I am now at a complete loss and I am sure that everything is now in my head.

Jo xxx


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## joplin1975 (Jul 21, 2011)

Jo,

I can't answer all your questions, but "acquired hypothyroidism" is and can be used interchangeably with Hashimoto's. The idea being that you started off life with normal endocrine function and, over time, as a result of the autoimmune process, you became hypo.


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## Jo853 (Aug 16, 2013)

Hi Joplin, thanks for your reply.

It's not the "acquired hypothyroidism" I doubt as such, but I'm not sure why this doctor has put on my sick note "acquired hypothyroidism" and the previous doctor has put in my sick note "low mood" and "anxiety symptoms".

Sorry for any confusion caused.

Jo xxx


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## tlindsey48 (Mar 20, 2014)

Nothing is aquired. Our bodies are attacking our Thyroid and it causes anxiety symptoms and low or altered moods. Ugh.....


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## CA-Lynn (Apr 29, 2010)

Tlindsey wrote "Nothing is acquired."

Not true.

"Acquired Hypothyroidism" is a medical diagnosis [2448 in the ICD-10 system]. It means it was NOT congenital [present at birth]. Any one of a number of things could have brought it on: autoimmune, different drugs, etc. However, you have antibody testing that demonstrates that it's an autoimmune disease for you.

I'm not sure what a "sick note" is....I interpret that to mean the doctor's notes?

Frankly, I think no one but a board certified psychiatrist or a licensed clinical psychologist should diagnose depression and/or hand out Rx's to treat it.


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## Jo853 (Aug 16, 2013)

Thank you for your reply.

Sorry, I don't quite understand. I thought since my antibody results are below the positive titre I was led to assume that I am no longer Hashi's or have an autoimmune attack? Is this now not the case?

A sick note is a doctor's certificate, apologies. It has been issued for 2 months.

The doctor who diagnosed me with depression - he is a typical general practitioner but has put on my medical notes that I have a form of "neurosis", now. That makes me feel so much better - not. 

Jo xxx


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## bigfoot (May 13, 2011)

Jo -- keep on being tough and advocating for yourself. You're doing an awesome job! 

Something to keep in mind is that antibody levels, like lots of things, will change day by day. A set of labs today will only reflect a snapshot in time -- in a couple of months the numbers could be very different, either up or down. Certainly your antibody numbers are not exactly at the low end, and it wouldn't take much for them to be abnormal. It sounds like your previous endo and this doctor both agree that you have a thyroid problem, but disagree on whether it is certain causing signs & symptoms. The fact that she wrote "acquired hypothyroidism" on your note seems to indicate that she feels that your thyroid is the big issue right now. Thyroid problems, as well as lots of other endocrine and medical issues, can cause changes in mood, anxiety, depression, etc. Something like Citalopram might take the edge off temporarily, but that really doesn't address the underlying cause(s) of your symptoms. If you can go after these root cause(s), then other things should improve, too.

What did this doctor say about trying T3 meds? Are you on any sort of thyroid meds at the moment? Either way, it can take a while to adjust meds, and that can leave you feeling as if you're on a roller coaster at times.


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## Jo853 (Aug 16, 2013)

Hi Bigfoot, thanks for your reply. 

I figured that might be the case of my antibody levels waxing and waning. I was a bit surprised that both my antibody levels were out of the positive range - well, were too low to be positive but I guess that was just the levels reported at the time and nothing else. One of my Hashi's friends has said that the only thing they know to bring down antibody levels is selenium - which I do not take. And there was me thinking it was due to me taking the Vitamin D and Vitamin B12!

The doctor I saw last week didn't say anything about trying T3 meds as she felt that was not her domain and it was something the endocrinologist should look at instead. Yes, I am on Levothyroxine at 100mcg and have been on it since February 20th this year.

The radiographer at my ultrasound appointment asked me what dose I was on at the time, too, and when I told her she said that was not a high enough dose! But that wasn't her job to say that or ask me!

I am seeing the doctor today as I have discovered a lump in my breast. It's been there for a month and I'm worried that it could be connected to the thyroid. Not sure but I can only go and find out.

Jo xxx


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## bigfoot (May 13, 2011)

Yes, selenium is supposed to help calm the antibodies, but more is not better. I believe the top end recommended daily amount is around 200 mg. So if you are taking a multivitamin that already has some in it, you can probably find a standalone selenium supplement to make up the difference. Or, you can scope out good-quality multivitamins that already have the 200 mg amount.

When you see the endo again I would definitely suggest asking about a trial of adding a small amount of T3 to your daily regimen. The problem with thyroid issues, as you're discovering, is that no single doctor has all the answers. There are a lot of misconceptions, conflicting opinions, and myths out there. Add in the complications of autoimmune problems, and hardly anyone can have all the knowledge required. The best way to go is to utilize each doctor's own strengths to achieve your goal (and theirs, too) of getting you on the road to recovery and good health. I still believe wholeheartedly that the diagnosis & treatment you get in the doctor's office nowadays is lagging about 10-15 years behind the cutting edge research, at least as far as thyroid issues go. I read a good article a while back where the opinion was that in the relatively near future we will probably see autoimmune specialist doctors cropping up.

IIRC, for a full replacement dose, the healthy human body makes somewhere in the neighborhood of 125 - 137.5 mcg of T4 daily. Of course we all are different, but that's a ballpark estimate. A small fraction of that is turned into T3, and oddly enough, some of that conversion activity happens in the liver of all places. So a happy, healthy liver is a good thing to work on, too.

The lump in the breast could be from many things, heck, it could even be a swollen lymph node. That probably wouldn't be too far out of a place considering Hashi's is an autoimmune disorder that causes inflammation and antibody attacks. So perhaps, in a roundabout way, it is tied into what's going on. But rather than speculate too much, hopefully the doc can shed some light on it. Do let us know what you find out, and positive thoughts are headed your way!


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## Jo853 (Aug 16, 2013)

Hi Bigfoot, thanks for your reply. 

I might look out for a multivitamin that already has the 200mg amount of Selenium. I didn't think about that.

I only hope the endo does put me on a trial of T3 to my daily regimen as I understand some NHS endocrinologists do not allow this. Would it be worth taking the results of my latest blood test along? All of the results were normal and the doctor said they were okay but I don't feel any different at all. Unless I am sensitive to the antibodies even when they are not positive (anti-thyroid peroxidase was only 500 off positive and anti-thyroglobulin was 11 and a half off positive) or that they wax and wane, which is what I'm inclined to think. I'm just taking a shot in the dark with these theories. I'm no doctor so I don't know a lot about antibodies apart from the fact that I was elevated in anti-thyroid peroxidase twice last year.

Or I may need to have my T4 up much higher than it is at present. But the doctor says I don't need to. :confused0031:

I saw the doctor about the lump in my breast. She said it was not cancer but it is quite likely to be a fibroadenoma. She hasn't said it's a swollen lymph node, but are there lymph nodes in the breast? It's been here through 2 menstrual cycles and a smaller one appeared on the other side a few days ago!! :confused0033:

Jo xxx


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## bigfoot (May 13, 2011)

Yeah, not quite sure how the system works over there across the pond. Sounds like it is much harder to change doctors, ask for tests, try different treatments, etc. We are headed that way here, but I digress...

Since you had high antibodies in the past, that is pretty convincing that something autoimmune is happening with your thyroid. The fact that this showed up on two different lab tests at different times only helps confirm that theory. Am I reading your labs from May 2013 (in your signature line) correct -- is that a TSH of 22? If so, that's pretty high. With all of this thyroid stuff, they should be looking at *all* of your labs, not just one set. It probably wouldn't hurt to bring them all along if you feel you need extra evidence to ask for a trial of T3. You could be a poor converter of T4 -> T3, too.

Some folks do fine on T4 only, others need T3 added to the mix, still others do better on desiccated or compounded meds. It's really a matter of what works best for you. There is no "one size fits all" approach as the medical system would like to see. Hormones can be a tricky balancing act requiring a lot of hands-on work and patience. I certainly hope they let you try the T3 -- there's not much harm in it, provided you go low 'n' slow (start around 5mcg or less), and are monitored by a good doc who looks at Free T4 & Free T3.

Now, I'm getting waaay outside my limited knowledge base here, but as far as the fibroadenoma goes: I would think they would run an ultrasound or some sort of imaging to double-check their physical exam findings. My understanding is that they think these things are tied into reproductive hormones. They can grow or shrink in size, and surgery isn't usually needed or recommended. Disclaimer: I only mention this info because I know of someone who had them -- again, it's up to you and your docs to address, since everyone is a different case. As far as lymph nodes, I believe those are found in the armpit area, as well as around the breasts (amongst many other areas in the body).


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## Jo853 (Aug 16, 2013)

Hi bigfoot, thanks for your reply.

Yes, my labs in May 2013 showed my TSH at 22. I had to do a double take when I first received them and read that.

Unfortunately my doctors only look at one set of labs and not all of them.

I have my endo appointment in May 25th (unless it gets moved again, which I will not be happy about!) so I will bring all lab results with me as evidence to ask for a trial of T3. The last test that showed my FT3 level was done privately so I'm hoping that the endo will agree...

I used an online tool to convert T4 to T3 and apparently my conversion is 22.28 nmol per second (20-40). I mentioned this to a fellow thyroid sufferer and they have said that the software used is pretty crude so I don't know. :confused0003:

I'm still waiting on a letter from the breast clinic about the fibroadenoma but I'm wondering if the swelling I had in my thyroid back in January 2012 (what my ultrasound report showed) has now moved to my breast? Is that possible? According to the ultrasound I had done in March of this year this swelling has now disappeared unless that's just the Hashi's causing the swelling to wax and wane anyway and it's just a coincidence that I have problems with a fibroadenoma... :confused0024:

Jo xxx


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## bigfoot (May 13, 2011)

Jo853 said:


> I'm still waiting on a letter from the breast clinic about the fibroadenoma but I'm wondering if the swelling I had in my thyroid back in January 2012 (what my ultrasound report showed) has now moved to my breast? Is that possible? According to the ultrasound I had done in March of this year this swelling has now disappeared unless that's just the Hashi's causing the swelling to wax and wane anyway and it's just a coincidence that I have problems with a fibroadenoma... :confused0024:


Granted, I'm not a doctor, so take all of this with a grain of salt. No, I don't believe that thyroid swelling can directly manifest itself in other areas like that. Perhaps related indirectly, your body is dealing with the inflammatory process or various hormone changes, of which your thyroid issue(s) are one. So I suppose they could be happening around the same time.

Not sure about the online tool -- I know there are some out there, but not sure of the science behind them. Lots of opinions and theories abound, since much of this stuff is poorly understood.

Yes, it sounds like you should bring the labs in case the endo wants to see them, or in case you want to reference them yourself. Trends are important and show a much more complete picture.


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## KeepOnGoing (Jan 2, 2013)

How strange! I've had 3 fibroadenomas of the breast, and a thyroid nodule, too.

Does make you wonder - perhaps I'm just "lumpy"!


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## Jo853 (Aug 16, 2013)

Yes, I will take it with a grain of salt. 

The strange thing at my first appointment with the endo was that she included the Vitamin D deficiency, iron deficiency and primary hypothyroidism but no folate deficiency even though she mentioned this in the appointment! Makes me wonder if she meant to have left that out.. :confused0006:


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## Jo853 (Aug 16, 2013)

KeepOnGoing said:


> How strange! I've had 3 fibroadenomas of the breast, and a thyroid nodule, too.
> 
> Does make you wonder - perhaps I'm just "lumpy"!


It does make you wonder, you're right. I've had so many problems with lumpy breasts but they have never prompted one of my breasts to swell like this! :huh:


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## bigfoot (May 13, 2011)

Jo853 said:


> The strange thing at my first appointment with the endo was that she included the Vitamin D deficiency, iron deficiency and primary hypothyroidism but no folate deficiency even though she mentioned this in the appointment! Makes me wonder if she meant to have left that out.. :confused0006:


Doctors are like the rest of us -- they forget stuff, too. Heck, I can't even tell you what I had for dinner two nights ago.  I'd rather have a doctor who is an active listener and occasionally forgets stuff, than a doctor whose own ego doesn't fit in the room, and has the memory of a robot.

Best you can do is prioritize your time with doctors. I keep a small piece of paper with questions scribbled out to remind myself before an appt. I try to hit the major questions and big issues first; the smaller stuff can wait until next time if we are short on the minutes.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Doctors are like the rest of us -- they forget stuff, too. Heck, I can't even tell you what I had for dinner two nights ago.


That put a smile on my face.  I needed that so thank you. 

I thought the endo I saw was pretty good - till she stopped responding to my emails and phone messages for her to call me back when I had things on my mind.

The idea with the piece of paper with questions scribbled out to remind yourself before an appointment sounds helpful. Thanks for the suggestion.

I have written out questions to take with me in the past but the doctors I see can only see me for up to ten minutes. And some of them do this annoying habit of looking at their watch or clock to check the time and make sure the appointment is not overrunning which I find a little rude.

The questions I have at the moment for the endo are ones like:

"The private labs I had done have shown that although I am converting T4 to T3 it's not very much. Would you agree with this finding and what would you recommend?"

"If the ACTH stimulation test was normal yet you stated in your report that I have visible hyperpigmentation around my eyes and on my back and legs, why is this happening?"

"I have developed white spots on my legs and arms. I understand that it could be vitiligo." - Sorry, I'm not requesting anyone to jump in and answer this. It's just a question I'm posing to the endo.

"Is it possible to have my antibodies checked again?"

"Other symptoms are bothering me, such as excessive hair growth which is developing in a male pattern. Although this is something I have always had a problem with and that my sex hormones are found to be normal in the blood test done back in January 2014, why is this?"

"Why was only one set of antibodies tested and not both by the doctor's labs? And would it have been the case that the anti-thyroglobulin levels would have been much higher than they are at present as the private labs have suggested?"

"I was diagnosed with Raynaud's in 2011 and diagnosed hypothyroid in 2013. Is it possible that my Raynaud's is secondary to the high TSH result which back in 2011 the blood test done by my former doctor's practice suggests?"

"Is it possible I could have a total iron panel and tests done to check my magnesium, zinc and selenium levels?"

Any more may come to mind before the appointment but these are just the ones I have in mind at present. :lol:


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## bigfoot (May 13, 2011)

Sorry to hear you only get about 10 minutes with the docs. Ugh. In all honesty, that's not enough time to get the formalities out of the way, let alone get into anything detailed or complicated. So it all comes back to prioritizing. IMHO, I'd think about what short- and long-term goals you have, specific tests you want run, or treatment(s) to try. For example, vitiligo would be interesting to know, and certainly adds to your medical history, but does it change the treatment you are seeking?

Not trying to be rude here, but I think your doctor has stopped returning your phone calls and e-mails because they, like many docs, probably view thyroid patients as needy and time-consuming. We tend to ask a lot of questions and stabilizing hormones is no easy feat to begin with. (Heck, I used to show up with a whole typed page of questions!) All of this is too bad, because in reality, we are simply showing interest and concern over our own health. If only more folks were like that, we would probably be healthier as a society. But the system is generally not set up to accommodate this approach -- it is time and revenue based nowadays. Quantity of patients seen daily has gone up, but overall quality of care has gone down. And this isn't just specific to endocrine stuff, either. It's across many facets of healthcare. But again, I'm getting off on a tangent here...


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## Jo853 (Aug 16, 2013)

Thanks for your reply.

Uhmm, I guess the vitiligo wouldn't change the treatment I am seeking but by the same token why do I have it? It's a catch-22 with my situation - aargh! :sick0012:

I know what you mean about thyroid patients being seen by the doctors as needy and time-consuming as I feel like that with some of the doctors I see at my practice. I did show up at my first endo appointment with a list of typed questions as long as my arm - but I didn't ask any of them because I didn't know if I had to or for how long the endo was going to see me for.

I might look at getting my levels tested every month to see what's happening. So the TSH, FT3 and FT4 - and see what comes out from those. Maybe nothing but who knows? 

I'm more determined to go ahead with it all the more since today - I felt dizzy, lightheaded and sick...yuk. I know it's easy to blame this on the thyroid...ah well. I can only monitor it and if it happens again...maybe see the doctor about it?

I doubt they'll do anything - once I saw them about me blacking out and falling over - which I remember very little about except finding myself lying in a heap on the floor. They only asked me some questions about what had happened and if I injured myself. At the time I did as I ended up with a nasty bruise on my arm. That was it. No tests. No referral. Nothing. Feeling confused at the appointment was an understatement to say the least. I thought they would be more concerned...falling over, no recollection of it and an injury to boot...


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## surge (Aug 15, 2012)

KeepOnGoing said:


> How strange! I've had 3 fibroadenomas of the breast, and a thyroid nodule, too.
> 
> Does make you wonder - perhaps I'm just "lumpy"!


KeepOnGoing-- my midwife once told me this, that I WAS lumpy, so I laughed. I wasn't laughing later when I had all kinds of nodules in my thyroid, but eh, at least I'm consistent, right?


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## surge (Aug 15, 2012)

Hi, Jo-- It sounds like you're doing a good job of researching and advocating for yourself and you've kept good records. Definitely bring your fat file of facts to your next appointment and really, I'd say ANY appointment you have b/c you never know what's going to be useful/helpful to refer to directly.

So yes, as you've noticed, there is no cure for AI thyroiditis. You can have states of euthyroid, but you have acquired an autoimmune disorder now and it's yours now. Congratulations. A energy-stealing little bundle of anti-bodies! and your doctor was right to put that in your file. Who knows what the other doctor was thinking. I just read a book, _The Pain Chronicles_ where a women got all of her medical notes, and she noticed one specialist had invented a bike accident that never happened to explain her chronic shoulder pain. That was the most outlandish example, but a lot of the doctors mis-stated details in their notes. So it's not totally surprising that the previous note is the most correct portrait.

It does sound like whatever your regime has help quell the antibodies a bit and I also don't think it's wrong to press to either increase the T4 or try T3. I do understand why your GP wasn't comfortable messing with T3. That stuff can be intense and not everyone reacts well. If your endo says no, ask when s/he would see if as a feasible option, if you continue to still have symptoms. If s/he say never, well, that'll be determinant. Also, If T3 is a no-go for now, I'd be all about asking to try a bump in T4 to see what happens.


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## Jo853 (Aug 16, 2013)

Hi Surge, thanks for your reply.

Yes, I'm hoping to speak to my doctor at some point this week to try and ask for my Ferritin, Vitamin D and Vitamin B12 levels checked before my endo appointment in May. The endo is based at a hospital which is not local to me and I don't think it would matter if I had my levels done say a week or two beforehand. I do take Vitamin D at 3000IU, Vitamin B12 at 1000mcg and iron with Vitamin C at 40% RDA so I am trying. It feels as though I'm not at times because of how rough I still feel. 

I don't know what it is I've done to reduce the antibodies and I'm not even sure what the anti-thyroglobulin levels were as the result in March was the first time they had been checked! Would it be the fact I went gluten free and dairy free for a bit? If so I find that hard to believe as the anti-TPO antibodies reduced from 84 to 41 when I didn't make any changes at all and wasn't taking any supplements!

I'll definitely take your advice on board about asking my endo when taking the T3 would be a viable option but I understand some endos over here in the UK can be a bit funny about the question of a patient starting/taking T3. My doctor has told me to stay on the T4 for now at 100mcg as she believes I'm doing well on it going by my lab results (she did say my T3 looked, in her words, okay but she didn't sound entirely sure) but I feel so terrible. My period arrived today and it's painful and just dark blood...so on top of feeling low and tired I now have a painful dark period. Nice. -_-

Would the doctor get cross with me if I increase my T4 medication myself? I don't even know how much I can afford to increase to or how much difference it will make as I've had my medication lowered and increased so many times. I remember being on a dose of 125mcg at one stage and I felt no different at all.

Jo xxx


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## surge (Aug 15, 2012)

Yes, I totally know how you feel, so impatient and desperate for anything better.

-I do think it's best to avoid administering your own bump as far as doses. B/c yes, the doc will be cranky. I think if you say you need something to change: either T3 ideally. Then if that falls flat, communicate the compromise of a bump in T4. I hate groveling for doses. But sometime, you have to communicate the desperation clearly and loudly...and repeatedly. The antibodies do make it slightly harder to totally 'trust' the thyroid panel results, since almost all of us on the board with antibodies have had the experience of feeling like the numbers are connected to the symptoms. You can argue that you need to be closer to 1 to feel better. You have enough experience. I know if I'm at 2, I have symptoms. So it might be that if you're above 1, you have symptoms. And I should say, I've been at 2 and I've been at 20, and the difference isn't actually that big. I feel a degree or so worse, but I have all the same symptoms at 2, just more bloated, more constipated, more tired, more bald, more crazy-hearted (beats, but also anxiety) at 20. I started writing down symptoms with each panel result, so I have a record, but also so I could begin to show my doctors patterns.

-Plenty of docs in the US are nervous about T3 and about dessicated; it's not just the UK. Also, plenty of people with hashis have issues with T3 and dessicated, so it's ok to be wary (as long as you feel there's also some flexibility and willingness to see you as an individual patient). If you have a bad reaction to the T3, you'll have it pretty quickly...so you'll know within a week or two that you'll need to back off. For this reason, it seems like an experiment worth trying at least b/c there is some short-term feedback. But even so, when you feel crappy, why not let you try something for a month just to see?

-I know it's exhausting to take lots of supplements, but since you do have the hormone swings are really doing a number on you, consider going back to gf and consider supporting your liver, which is helps with hormone balance, by drinking dandelion root or taking a supplement. Since you mentioned have painful, thick periods, you might try a PMS-support supplement with dandelion in it. This does help me.

-slow and steady wins the race. Even if it is a crappy race to be a part of.


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## Jo853 (Aug 16, 2013)

Hi thanks for your reply Surge.

In that case I won't increase my T4 by myself. Fellow thyroid patients I've spoken to at my local health centre have said they increase theirs themselves and I've been doing that, too. So I guess in a way what they're doing is irresponsible??

I don't think the doctor I saw understands T3 but another doctor I saw mentioned something about T4 to T3 conversion - so my take on that is that he knows something the previous one does not or likes me to think she does not know anything. I'm wondering if it's worth seeing the doctor, in that case, that does know something about T4 to T3 conversion as he may be likely to prescribe me T3 or at least see where I'm coming from...

I think that when my TSH was anywhere near one - which was only once at 0.69 and that was back in 2013 - I was still tired and I could not tolerate the cold well at all, but would the high antibodies at 84 have been to do with that? I know that some people can feel pretty terrible with their antibodies in the hundreds!

I know as well that some people I've spoken to at the same group feel well with their T4 in the twenties and I'm wondering if I'm one of those people...

What I may look at is asking the doctor who knows something about T4 to T3 conversion and see what he says as he might have more of an understanding. I can't hope to expect that he will let me go ahead with the T3 but I need to know where I stand with some of these doctors. The one who didn't "know" anything about T3 said that I seem to be very clued up with it more so than her and that it's something she couldn't help me with. I wish I were more clued up with thyroid stuff than a doctor!

Thanks for suggesting dandelion root - I don't think our local shop stocks something like dandelion and burdock but I believe it may stock tea infused with dandelion and other things - I think star anise, ginger etc. So I will look at that, definitely.

Jo xxx


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## Jo853 (Aug 16, 2013)

Hi all,

just to update - I was unable to get an appointment with the doctor today as their systems were down the day before. That, I can understand as they would have had a backlog of patients doing the same as me - book an appointment. The receptionist asked me if it was urgent and whilst I said that it was not I mentioned that it was something I can hold off for another day, just to be reasonable and meet them halfway.

So -- what I've decided to do is this:

* Book an appointment with the doctor that mentioned T4 to T3 conversion and see if a trial period of T3 would benefit me. I won't go there expecting him to say "yes" just like that. He'll want to hear me out and that's why I'll be taking results of my last tests along with me so he can see where I'm coming from. I might be disappointed - chances are that I will - but I won't know that unless I go there as I will never find out for myself. If he does not agree with me taking a trial period of T3 then I will ask if it's unreasonable to increase my current medication. If he asks why then I will explain that I believe I will need to have my TSH near 1, maybe even below that and with my FT4 up in the 20's - and that what works for most patients he sees is not working for me. To be fair however much T4 I've been on has never really worked for me.

* Request my bloods to check my ferritin, Vitamin D and Vitamin B12 levels. I am due to see my endo on 20th May (I think I may have put the date as something else so apologies if I have!) and as she wants to check my levels again in 6 months or so from when I last saw her (January) the hospital she is based at is not local to me and will mean me making 2 bus trips just to have bloods done. Maybe a total iron panel is not asking too much as well?

* Request a retest on my TSH, FT4 and FT3, preferably to be done the same time as the ferritin, Vitamin D and Vitamin B12. Although my last test done for TSH, FT4 and FT3 was normal I've ordered a test through a private lab to be done to check my levels 5-6 weeks after the previous one. I'm still exhibiting symptoms and I'd like to see if the 100mcg of T4 I take now is progressing well.

Any advice on the above would be welcomed.  Thanks!

Jo xxx


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## bigfoot (May 13, 2011)

Sounds like a good game plan.


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## CA-Lynn (Apr 29, 2010)

What makes you so sure that you've done something to reduce the antibodies? As the "owner" of multiple autoimmune diseases I can tell you with certainty that antibodies wax and wane, whether you do something or not. Still, the Rx drugs do help normalize things. But plenty of people on the board will tell you that sometimes, in spite of the drugs, they "flare."


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> What makes you so sure that you've done something to reduce the antibodies? As the "owner" of multiple autoimmune diseases I can tell you with certainty that antibodies wax and wane, whether you do something or not. Still, the Rx drugs do help normalize things. But plenty of people on the board will tell you that sometimes, in spite of the drugs, they "flare."


Hi thanks for your reply.

I'm not sure if I've done anything to reduce the antibodies, but because my intake of gluten/wheat and dairy was more reduced at the time I thought this may have had an effect on the antibodies. So this has no effect at all and if I get my levels checked again at some point they will have increased?

Jo xxx


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