# Where is my weight going?



## Jo853 (Aug 16, 2013)

Hi all,

I've been cutting out the dairy and gluten as well as tweaking my T4 dose from 100mcg to 125mcg, but I'm worried that I'm losing weight. I've been eating more throughout the day, too, expecting to gain another half a stone and feeling pleased with myself when I end up quite full up but by the next day I wake up and I'm still as thin as a rake. I currently weigh 46kg/101lbs. I'm absolutely convinced my illness is a curse as I'm meant to be overweight with thinning hair but I'm skinny with my hair's length down to the small of my back! I don't mean to brag but pretty much every day I get attention from other men and I feel like saying: "I'm hypothyroid, I'm not meant to look like this!!" 

Where is my weight going? Why am I not gaining any weight with the hypo? Might it be my low zinc as that can cause weight loss?

ACTH stim test said "normal" apart from high cortisol, so...is an adrenal home test kit a wise move? I have one at home but I haven't used it as I know that once it's sent off it needs to be paid for - which is going to cost me £70/$117 in one go.

My benefits entitle me to £90/$151 every two weeks although this may change once I am invited to a medical capability assessment to be put into a work-placed support group. I've been waiting on a date for this since February.

If my thyroid hormones are still hanging in there at the normal range (but only just) wouldn't that mean that my metabolism has slowed down? My stick-thin figure tells me otherwise.

Thanks

Jo xxx


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## bigfoot (May 13, 2011)

Hypothyroid and hyperthyroid won't necessarily mimic textbook signs & symptoms. Usually people gain weight as hypo, and lose it as hyper, but I don't think that's a guarantee. Plus, since you're dealing with Hashi's, that can mean swings either direction.

Oh, and just a friendly nudge -- if you can keep all of this in one thread, it makes it easier for us to follow.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Hypothyroid and hyperthyroid won't necessarily mimic textbook signs & symptoms. Usually people gain weight as hypo, and lose it as hyper, but I don't think that's a guarantee. Plus, since you're dealing with Hashi's, that can mean swings either direction.
> 
> Oh, and just a friendly nudge -- if you can keep all of this in one thread, it makes it easier for us to follow.


Ah, ok. Thanks for the friendly nudge. Sorry, am I creating too many threads? I only am creating so many because of the different things going on...

Jo xxx


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## Lovlkn (Dec 20, 2009)

Can you post the thyroid labs with ranges please?


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## Jo853 (Aug 16, 2013)

Lovlkn said:


> Can you post the thyroid labs with ranges please?


There are lots of them I'm afraid.

November 2011

TSH - 5.2 (0.2-4.2)
FT4 - 16.8 (12-22)

(No medication and no diagnosis, was told I was hyperthyroid)

January 2012

TSH - 2.2 (0.2-4.2)
FT4 - No result as TSH normal

January 2013

TSH - 0.69 (0.2-4.2)
Anti-thyroid autoantibodies - 84 (sorry, no range)

May 2013

TSH - 22 (0.2-4.2)
FT4 - 10.9 (12-22)

(Started off on T4 at 25mcg, then 50mcg and then 75mcg)

August 2013

TSH - 4 (0.2-4.2)
FT4 - No result as TSH normal

November 2013

TSH - 4.3 (0.2-4.2)
FT4 - 15.3 (12-22)

(I gave up on the T4 as I did not feel any better. I don't think I was being patient with it in essence but my doctor was not being very understanding as he said most patients do well on T4. I think he felt I was being a troublemaker...)

December 2013

TSH - 4.6 (0.2-4.2)
FT4 - 15.6 (12-22)
Anti-TPO antibodies - 41 (0-34)

(Was put on Vitamin D3 800iu but I changed this to a 3000IU spray)

January 2014

TSH - 2.7 (0.2-4.2)
FT4 - No result as TSH normal

February 2014

TSH - 3.6 (0.2-4.2)
FT4 - No result as TSH normal

(Restarted T4 at 100mcg)

March 2014

TSH - 1.87 (0.2-4.2)
FT4 - 16.6 (12-22)
FT3 - 4 (3.1-6.8)
Anti-TG antibody - 103.5 (0-115 - negative)
Anti-TPO antibody - 33.5 (0-34 - negative)


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## bigfoot (May 13, 2011)

Looks like a real roller-coaster to me, and tending towards the hypo side. Since you re-started the levothyroxine/T4 at 100 mcg in Feb., it appears that your TSH and FT4 have definitely improved. Keep in mind it takes 6-8 weeks for the body to fully absorb T4. So if you started 100 mcg on Feb. 1st, you potentially wouldn't have gotten full use of it until Apr. 1st. And that FT3 is still on the low end, too.

Something catches my eye regarding your numbers. Can you specify what units and range(s) the lab used for your thyroid antibody tests? For example, looking at my lab's ranges, for TPO Ab's it runs from 0.0-60.0 U/mL, and for Thyroglobulin Ab's it runs from 0.0-60.0 U/mL. I especially surprised to see your Thyroglobulin Ab range max out at 115 of whatever units those are. Seems like the bar is set awfully high.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Looks like a real roller-coaster to me, and tending towards the hypo side. Since you re-started the levothyroxine/T4 at 100 mcg in Feb., it appears that your TSH and FT4 have definitely improved. Keep in mind it takes 6-8 weeks for the body to fully absorb T4. So if you started 100 mcg on Feb. 1st, you potentially wouldn't have gotten full use of it until Apr. 1st. And that FT3 is still on the low end, too.
> 
> Something catches my eye regarding your numbers. Can you specify what units and range(s) the lab used for your thyroid antibody tests? For example, looking at my lab's ranges, for TPO Ab's it runs from 0.0-60.0 U/mL, and for Thyroglobulin Ab's it runs from 0.0-60.0 U/mL. I especially surprised to see your Thyroglobulin Ab range max out at 115 of whatever units those are. Seems like the bar is set awfully high.


Thanks for your reply.

With the units and ranges the lab used for my thyroid antibody tests they are set out as below:

January 2013 - thyroid autoantibodies - 84 KIU/L (no range, printout provides no range either which is not helpful) I take it that KIU/L means Kilo Internation Unit? So if your lab ranges for TPO for example are set out from 0.0-60.0 U/mL would that mean that my TPO is 84 U/mL? Sorry I am not good at maths...

March 2014 - Anti-TG - 103.5 IU/L (0-115 IU/L) (Lab says "Negative")

Anti-TPO - 33.5 IU/L (0-34 IU/L). I don't understand why the lab hasn't put this result as negative if it was not positive. Might it be that the result was considered overly high or a typo on the labs' part?

This is all just so confusing especially since one lab is using one unit and another is using a different unit...


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## Jo853 (Aug 16, 2013)

Boyfriend is now giving me hassle. I doubt I will get any better at this rate as I've been going to art classes, talking therapies and support group meetings to manage things at the moment and he's more concerned about our finances! I think I should get rid of him.


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## bigfoot (May 13, 2011)

My math is a little rusty, too. Here is an online conversion chart, if that helps: http://www.soc-bdr.org/rds/authors/unit_tables_conversions_and_genetic_dictionaries/e5196/index_en.html

Hopefully you can get in to see the doc soon and get the dose(s) sorted out, and perhaps add some T3.


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## CA-Lynn (Apr 29, 2010)

Someone needs to be concerned about finances. No reason to get rid of him. No money, no treatment. Real simple. So look at it that way.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Someone needs to be concerned about finances. No reason to get rid of him. No money, no treatment. Real simple. So look at it that way.


Hi thanks for your reply.

Well we had a massive row about travel expenses. See, I go out on 2-3 days a week to go to refexology, thyroid support meetings, counseling and art classes. He wants me to limit my amount of travel each week, simply because I do not work. So I said to him, "I need to go to these events because that's what it takes for me to get better. I'm sorry if you don't like it and I don't like my illness any more than you do but I do need support and help to cope in other ways." He didn't seem to like this answer and simply reiterated, again, that I need to cut down on expenses.

To make matters worse my car does not work as its battery has gone dead. He was the one who went to the trouble of removing the battery from the car and charging it up in our apartment/flat for 5 hours. I said that if he could remember to take the battery out of the car to charge it up there would be no need for me to keep spending a lot of money on the bus. He said "it's your car." I then said "What do you mean by that? What do you want me to do about this?" "Nothing," he replied.

I really have no idea what the argument had solved as to me it solved nothing. He knows how poorly I get and what it can do to me but he doesn't seem to know the lengths I have to go to, to get myself well again. As a result of the car not working I have to take a 20-minute walk to a bus stop, wait up to 30 minutes for a bus, go on the bus ride which only takes 10 minutes or so to get to where I need to go and then walk another 7-9 minutes to the health park centre. Same thing returning home. Absolute hassle but the only other thing I could do is take the car battery out myself - but there is one right way of doing that and my boyfriend was able to follow instructions online on how to remove it.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> My math is a little rusty, too. Here is an online conversion chart, if that helps: http://www.soc-bdr.org/rds/authors/unit_tables_conversions_and_genetic_dictionaries/e5196/index_en.html
> 
> Hopefully you can get in to see the doc soon and get the dose(s) sorted out, and perhaps add some T3.


Hi thanks for your reply and your help re this.

Unfortunately I cannot look up anti-thyroid peroxidase or anti-thyroglobulin from the compounds list. Even if I insert the SI unit the program still prompts me to select a compound - which I can't do!! Ah well, no worries. Just seems a bit odd that my doctor's labs use one unit for anti-thyroid peroxidase and the private labs use another. Not a problem.


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## Jo853 (Aug 16, 2013)

Just an update:

- I have spoken to my doctor yesterday and I went to the appointment armed with two thyroid books and copies of all my test results - including the private one I had done. She was pleased that my anti-thyroid peroxidase levels dropped from 41 to 33.5 (albeit the units were different) and she has transferred my TSH, FT4 and FT3 levels onto my record. She asked me to get the receptionist to photocopy the results, too, as they are private and the NHS would have no record of them. I also pointed out that it's not my TSH result that concerns me but the two thyroid hormone results.

- My doctor has said for the slate to be wiped clean and has requested bloods on the following: thyroid function, ferritin, Vitamin D, folate and complete blood count. She said my complete blood count ought to have been done in February of this year and my ferritin ought to have been done in March of this year. She also could not understand why my folate was not supplemented if I was deficient in that. She asked me what symptoms I have and I explained that I get depressed and fatigued most of the time - she then asked me if I had sought counseling and I said that I do see a counselor (I've actually found out that he is qualified, just that the sessions are free of charge) and if I had been on any anti-depressants to help with the low mood. I said that I had been on anti-depressants in the past but if anything they simply made the depression worse. I think she has now got the impression that I am a bit mad...

- Since the argument between my boyfriend and I we have looked into ordering healthier meals that exclude gluten and dairy, for my benefit. We plan to start this properly next week as we have now received them.


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## bigfoot (May 13, 2011)

Glad the doctor is starting fresh and ordering new labs. Is this doctor treating your thyroid, and if so, what did they say about trying a little T3? Or any potential adjustments to the T4 dosage? (I know they are probably waiting to see the latest lab results first.) But hopefully they gave you an indication one way or the other of the next step(s). Oh, and fatigue can be a big symptom with iron deficiency. along with other issues. Did this doctor going recommend a supplement to deal with this? What is their overall plan for getting you well?

Sorry to hear about the argument between you and the boyfriend. It's hard sometimes for other people to understand an autoimmune illness, any illness really, when someone is basically "walking and talking". Family and friends are no exception here. It really helps to stop for a moment and look at it from their point of view. He just wants you to be healthy and happy, and is willing to help, but is frustrated by what he can't see or do. Hopefully you two can find some middle ground with all of this and work through it.


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## jenny v (May 6, 2012)

I think sometimes we thyroid disease sufferers forget about the toll this can take on our loved ones, too. It sucks to be us when we're so sick and helpless, but it must suck for them too since they can't often understand it or help us. It takes a toll on not just the person with the disease, but their friends and families, too.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Glad the doctor is starting fresh and ordering new labs. Is this doctor treating your thyroid, and if so, what did they say about trying a little T3? Or any potential adjustments to the T4 dosage? (I know they are probably waiting to see the latest lab results first.) But hopefully they gave you an indication one way or the other of the next step(s). Oh, and fatigue can be a big symptom with iron deficiency. along with other issues. Did this doctor going recommend a supplement to deal with this? What is their overall plan for getting you well?
> 
> Sorry to hear about the argument between you and the boyfriend. It's hard sometimes for other people to understand an autoimmune illness, any illness really, when someone is basically "walking and talking". Family and friends are no exception here. It really helps to stop for a moment and look at it from their point of view. He just wants you to be healthy and happy, and is willing to help, but is frustrated by what he can't see or do. Hopefully you two can find some middle ground with all of this and work through it.


Thanks for your reply. 

Well, the doctor is not entirely sure if my thyroid is causing the symptoms/problems as this is a new practice I am with. So they have little to go on until my records reach the practice. I think for now they're just waiting on the blood test results and seeing what comes back about that and then treat me from there. Nothing about thyroid medication. It was a mixed result for me.

The doctor did not recommend a supplement for my low ferritin (as the last time it was tested it was at 21 with the range 30-400 and that was back in December!) which I was a bit confused about. I know full well it will be low since when I did the gluten challenge to check for IGA antibodies in January/February (I can't remember when it was I did the test) it would have made the ferritin drop again. I think that's what happens, anyway but knowing me I could be wrong. 

I was on a supplement for iron before but it did not raise my ferritin very much, only by 6 units within 4 months. So I am hoping she recommends me another if the levels come back low again - and hopefully a liquid one at that as then I can just down it and not worry about it.

When my boyfriend and I argue we kind of go silent afterwards and make up within a few minutes, then all is forgotten. Yes, he does want me well and happy again and he's being more helpful and accommodating since we are trying this gluten free and dairy free meal plan.

Another thing I was wondering is, could I be magnesium deficient? I notice that when I drink hot almond milk (as I cannot have normal cows' milk) it tends to make me sleepy. When I googled this, many articles point to the melatonin in almond milk promoting a sleepy feeling and is more prominent in magnesium-deficient individuals. Would be interesting to see if a blood test in magnesium comes back low... :confused0006:


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## Jo853 (Aug 16, 2013)

jenny v said:


> I think sometimes we thyroid disease sufferers forget about the toll this can take on our loved ones, too. It sucks to be us when we're so sick and helpless, but it must suck for them too since they can't often understand it or help us. It takes a toll on not just the person with the disease, but their friends and families, too.


Hi, yes, it does suck. My grandparents don't understand either and although they have been supportive of my illness they can be perhaps too supportive. I remember a couple of days after the nutritionist appointment my grandmother called me and asked me questions like what I had for breakfast and lunch and dinner the previous day, if I've been drinking the almond milk and so on and so forth.
Because I am an only child and the only grandchild they ever really see and talk to (I have two cousins but they live out of the city and have homes and futures of their own) they see me as their little girl still. I was surprised that my grandmother even said that directly to me when I was last round their house!


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## CA-Lynn (Apr 29, 2010)

Take this for what it's worth: people who work and have thyroid disease have less time to fret over it.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Take this for what it's worth: people who work and have thyroid disease have less time to fret over it.


Well, my results are now normal so I guess there's no reason why I cannot go back to work now.


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## jenny v (May 6, 2012)

> Take this for what it's worth: people who work and have thyroid disease have less time to fret over it.


LOL, this is so true! I have never taken time off of work in 10 years of thyroid disease (although there were probably times when I could/should have) and while it's been hard, it's also been a very good distraction, too. There are times when I struggle to even get out of bed, but once I'm at work I find I concentrate less on my symptoms and problems and that's good for me mentally. It can be very easy to get totally caught up in your illness and that's not good both physically and emotionally.


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## bigfoot (May 13, 2011)

Jo853 said:


> Well, my results are now normal so I guess there's no reason why I cannot go back to work now.


I totally agree -- if you physically feel up to it, can get yourself around without much trouble, and are still able to perform your job, it absolutely is a great distraction. Lab numbers be damned. Not only that, but it feels good to be contributing towards society, helping others, and not focusing on yourself 100% of the time. And obviously you still want to work towards proper treatment and care, with a long-term game plan.

I wouldn't just sit around and wait for your ship to come in, so to speak. These doctors are not going to have all the answers. Spend time with family and friends, live your life, do what you enjoy, and make modifications wherever you need to.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> I totally agree -- if you physically feel up to it, can get yourself around without much trouble, and are still able to perform your job, it absolutely is a great distraction. Lab numbers be damned. Not only that, but it feels good to be contributing towards society, helping others, and not focusing on yourself 100% of the time. And obviously you still want to work towards proper treatment and care, with a long-term game plan.
> 
> I wouldn't just sit around and wait for your ship to come in, so to speak. These doctors are not going to have all the answers. Spend time with family and friends, live your life, do what you enjoy, and make modifications wherever you need to.


Thanks for your reply.

I have a couple of friends I can visit now and again as they have said to me their door is always open to me. So I will maybe pop round and see them next week.

I've made some modifications but it's going to take a very long time to get any positive results. Also bought some more supplements to help, too. Not every single supplement under the sun but enough that I can afford for now.

I've contacted a company that deals with recruitment and helping people get back into work and I may hear back from them soon.


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## jenny v (May 6, 2012)

Good for you! Even if you still feel pretty poorly physically, getting back out there and being productive can help so much mentally, which I believe eventually helps physically, too.


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## CA-Lynn (Apr 29, 2010)

Just so that newcomers don't get the wrong idea......Hashimoto's, in the grand scheme of things, is not the kind of disease that disables people and causes you to have to take time off. Of course, if you're a construction person you might not be able to perform to full capacity due to some minor lethargy.


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## Jo853 (Aug 16, 2013)

jenny v said:


> Good for you! Even if you still feel pretty poorly physically, getting back out there and being productive can help so much mentally, which I believe eventually helps physically, too.


Thanks.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Just so that newcomers don't get the wrong idea......Hashimoto's, in the grand scheme of things, is not the kind of disease that disables people and causes you to have to take time off. Of course, if you're a construction person you might not be able to perform to full capacity due to some minor lethargy.


Sorry, I don't understand. If I've been feeling pretty lousy then that does not mean that the hashimotos was responsible?

I can easily spend all day in bed and sleep like a cat. My boyfriend can vouch for that. And it wasn't the hashimotos... so it's the other things going on?


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## joplin1975 (Jul 21, 2011)

It's entirely possible Hashi's is responsible for how poorly you feel. I certainly used to want to spend all day in bed and can relate.

I think the point that was being made was that most people don't let the disease control their life to such an extent. That is, a conscious choice is made to continue living as fully as possible.

Which doesn't mean there aren't other things going on...I don't know what other complicating factors there are...but for people who are "just" dealing with Hashi's, not working is generally not the standard consequence of the disease.


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## Jo853 (Aug 16, 2013)

joplin1975 said:


> It's entirely possible Hashi's is responsible for how poorly you feel. I certainly used to want to spend all day in bed and can relate.
> 
> I think the point that was being made was that most people don't let the disease control their life to such an extent. That is, a conscious choice is made to continue living as fully as possible.
> 
> Which doesn't mean there aren't other things going on...I don't know what other complicating factors there are...but for people who are "just" dealing with Hashi's, not working is generally not the standard consequence of the disease.


I did have a job before but I left when my boss refused to let me see a doctor when I couldn't use one of my legs. The job also stressed me out and at one point I developed chest pain. I would come in every day fatigued and my under eye areas felt heavy and puffy. I decided to take voluntary redundancy as I felt that if my boss would not give me the opportunity to see a doctor then why ought I put up with it.

It's been suggested by a friend involved in the paleo diet that I have adrenal fatigue, hence other things going on.


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## bigfoot (May 13, 2011)

Not sure how the legalities and the system work over there, but I don't think any boss here could get away with denying someone a trip to the doctor. Not sure what "voluntary redundancy" is, but I'm guessing it's unpaid time off or something like that.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Not sure how the legalities and the system work over there, but I don't think any boss here could get away with denying someone a trip to the doctor. Not sure what "voluntary redundancy" is, but I'm guessing it's unpaid time off or something like that.


Voluntary redundancy is when an employee chooses to leave the company on their own free will rather than taking compulsory redundancy where they are given no choice but to leave. In both cases the employee still receives a redundancy package, which is their salary multiplied by how many years' service. In my case I had 8 years pay as I worked there for 8 years. The department I worked in was making cut backs. Four people in my team left on the same day.

I told my boss that day I did not feel good but because she had disciplined me in the past over exceeding my days off sick I did not want to put words into her mouth and I felt that to ask her to let me have time off to see a doctor would seem pushy if not cheeky. She suggested I use the lift instead of the stairs if my leg was causing me that much hassle.

The worst thing about it all is that I could have been allowed more time off sick and more time off for blood tests and appointments. I just didn't know about that until after I left and I was long gone.

Just to add - this person I've been seeing for thyroid issues has said I am not well to work and she's been advising me to ask my doctor to sign me off. So this person is now wrong??

I forgot to put in one of my responses 2 or 3 replies before this one that other questionable things that have cropped up are from other blood test results and could be part and parcel of the hypo. Elevated red blood count, mainly. But hey could be any reason and I could be worrying unnecessarily - not hard for me to do.


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## CA-Lynn (Apr 29, 2010)

So you get compensation to do that?

Seriously? It seems strange to me that any employer wouldn't allow time off for medical reasons. Now maybe they might not want to pay you for the time off to see a doctor, and that is totally understandable.


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## bigfoot (May 13, 2011)

Ahh... I see. Thanks for elaborating on that. So basically you were let go with a severance package, as they call it on this side of the pond. Sorry to hear about all of this, but if there's a silver lining here, it's that there was at least some sort of financial compensation. Here we'd be lucky to get some sort of brief disability insurance, if we even qualified, as a best-case scenario. A job would be held open for a few months as an unpaid absence (FMLA), but after that it can be filled by someone else.

First problem is we are all dispensing advice to each other over the 'net. The second problem is that were are all dispensing advice to each other over the 'net. (Emphasis mine.) 

Respectfully, I'm not going to tackle the topic of whether this advisor telling you to seek out being "signed off" from work by your doctor is the right approach or not. I think that ultimately only you can make that decision, especially if it is going to have long-term implications. And certainly the advice of your doctor(s), family, and people you trust would enter into that decision.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> So you get compensation to do that?
> 
> Seriously? It seems strange to me that any employer wouldn't allow time off for medical reasons. Now maybe they might not want to pay you for the time off to see a doctor, and that is totally understandable.


No, no sorry. I was not diagnosed at the time I was in work. But because of how poorly I felt I left.

Timeline of events:

June 2011 - I had an operation that required me to take 2 weeks off work. I had then exceeded my time off work because I was signed off to recover from the operation and I was then disciplined for exceeding my time off work.

November 2011 - I was shown to have a high TSH. Doctor at the time did not treat me as I was classed as borderline.

2012 - I left my job 3 months after an Accident and Emergency nurse told me I was possibly suffering from thyroid problems. My boss did not allow me time off and so because of her seeming failure to sympathize (I presume she was taking past sickness absence into consideration although that happened over a year ago at the time...) I decided to leave.

2013 - I was diagnosed hypothyroid.

2014 - I was diagnosed Hashimoto's.

So no, I do not receive compensation as I was out of work when signed off sick. I am not in work at the moment so I can have as much time off as I want up until my sick note/medical certificate runs out.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Ahh... I see. Thanks for elaborating on that. So basically you were let go with a severance package, as they call it on this side of the pond. Sorry to hear about all of this, but if there's a silver lining here, it's that there was at least some sort of financial compensation. Here we'd be lucky to get some sort of brief disability insurance, if we even qualified, as a best-case scenario. A job would be held open for a few months as an unpaid absence (FMLA), but after that it can be filled by someone else.
> 
> First problem is we are all dispensing advice to each other over the 'net. The second problem is that were are all dispensing advice to each other over the 'net. (Emphasis mine.)
> 
> Respectfully, I'm not going to tackle the topic of whether this advisor telling you to seek out being "signed off" from work by your doctor is the right approach or not. I think that ultimately only you can make that decision, especially if it is going to have long-term implications. And certainly the advice of your doctor(s), family, and people you trust would enter into that decision.


LOL I had to look up severance package. I guess that's the basic gist. I was not offered compensation unfortunately as time had gone on after I had left and taken the redundancy money. A few months had gone by and I looked up something like "help with chronic illness at work uk". It was then that I read articles saying that employers could possibly put in accommodations for people with chronic illness (didn't matter what it was but autoimmune conditions came into it). I then regretted my decision to leave as once I've received the redundancy money that was it. No going back. So now I am back to square one in finding another job. I can't do much about my decision - what's done is done. And I wasn't happy in my job at all towards the end.

My mum and stepdad understood that I was not happy but as far as my grandfather is concerned, business is business and emotions do not come into it. But then again, he did work as a hirer and firer.

The doctor didn't seem to have a problem signing me off work in the past. She extended my medical certificate from 3 weeks to 2 months.

My grandparents do not understand and therefore have no opinion. My mum and stepdad are of the opinion that if there are supplements out there I need to take then I ought to acquire them - regardless of worries with money. They think I'm a penny pincher anyway as I hardly splash out on anything.

And my boyfriend doesn't understand either. He understands the anxiety as being hypo, but the depression he thinks is because I am out of work (who knows, he may be right), the cold intolerance he thinks is down to raynaud's, and the constipation he thinks is down to my diet.


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## Jo853 (Aug 16, 2013)

I just want to say that this person who has been running the thyroid support group meetings where I am has made it sound like I am on my last legs and this obviously isn't the case. So my thoughts are that I'll continue taking the medication, eliminate the gluten and dairy, look for work, get my blood tests done in 2 weeks and go to my endo appointment a week after that.


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## CA-Lynn (Apr 29, 2010)

Redundancy money is compensation and it equates, from what I understand, to a severance package in the US.

Jo, forgive me, but I'm the blunt one on this forum, so here goes:

I think "signing you off" is enabling you to take an easy way out....and is the wrong thing to do. Shame on the doctors involved. I wish you would visit the Rheumatoid Arthritis forum, or the COPD forum, and see how many people have very hard diseases with chronic pain, and still work full time. I know several people who had cancer and were single moms and underwent surgery and chemo and continued to work [taking time off for surgery and brief recovery]. In the grand scheme of things, Hashimoto's is so easy compared to other diseases.

As far as your former manager not being sympathetic, my hunch is that there's more to this story.

It would be nearly futile for me to address what goes on in your thyroid support groups, but I will say this: cancer support groups, bereavement support groups, I'm all for them. Thyroid support groups? Are you kidding me? I think they're just a way of enabling a thyroid patient to stay sicker longer.

Instead of blaming gluten and dairy, the manager, etc., etc., it's time to acknowledge that you just might be a part of the problem. You didn't like your job, saw an opportunity, and grabbed it. Now it's time to find a job, really focus on it, and get back in the real world.

I am giving you this kick in the derriere because I really feel you need it. I'm hoping you will start a serious job search immediately. Don't wait for the doctors' appointments before starting the search. Just do it. You need something productive in your life and no one is going to do it for you.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Redundancy money is compensation and it equates, from what I understand, to a severance package in the US.
> 
> Jo, forgive me, but I'm the blunt one on this forum, so here goes:
> 
> ...


Ok. I appreciate you being blunt with me so thank you. I have been searching for jobs although I don't know what I want to work as.

I was advised by the thyroid support meeting leader to ask the doctor to sign me off as her daughter suffers from Graves' Disease and she said that was what her daughter's doctor did.

The thyroid support group I was first with suggested I get signed off too and they announced a local support group meeting I could go to so I jumped at the chance to attend. If they have the potential to make a thyroid patient feel sicker then I simply will not attend them anymore.

Are you suggesting I am making myself sicker? Or that I am just a big problem in general to my health? I didn't quite understand.


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## CA-Lynn (Apr 29, 2010)

I'm suggesting that your "thyroid support group" is enabling you to stay sick.

Exactly what qualifications does this leader have? What degrees? Unless it's a Ph.D. in Clinical Psychology or an MD in Endocrinology [and I'm 99.99999% sure it's neither], then you're probably dealing with a layman who is not an expert.

Out of curiosity, do they charge for these meetings?


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> I'm suggesting that your "thyroid support group" is enabling you to stay sick.
> 
> Exactly what qualifications does this leader have? What degrees? Unless it's a Ph.D. in Clinical Psychology or an MD in Endocrinology [and I'm 99.99999% sure it's neither], then you're probably dealing with a layman who is not an expert.
> 
> Out of curiosity, do they charge for these meetings?


This leader does not have any qualifications I know of. She does not have a Ph.D. in Clinical Psychology or an MD in Endocrinology. She has connections with a complementary nutritionist (the one I saw back in March) who told my grandparents I was very sick, which surprised me.

No, they do not charge for the meetings.


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## CA-Lynn (Apr 29, 2010)

So they're there to market their products.

I'd ditch them - fast.


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## Octavia (Aug 1, 2011)

I have to agree with CA-Lynn here...it seems to me that the thyroid support group leader and the nutritionist may be working together to try to sell stuff to people while convincing them (and their families) that the patient is, as you say, "very sick." It sounds like you have limited funds to spend on healthcare (well, I suppose we all do), so I think you would be better served through the true medical community.

I've learned a lot here from people who have really struggled with thyroid and non-thyroid issues, and I'm always amazed at how everyone just "pushes through" and doesn't let their health issues get in the way of living. You are way too young to let something like this change your life so dramatically. You are in the prime of your life. Continue addressing your health issue AND continue living your life!


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## Jo853 (Aug 16, 2013)

Octavia said:


> I have to agree with CA-Lynn here...it seems to me that the thyroid support group leader and the nutritionist may be working together to try to sell stuff to people while convincing them (and their families) that the patient is, as you say, "very sick." It sounds like you have limited funds to spend on healthcare (well, I suppose we all do), so I think you would be better served through the true medical community.
> 
> I've learned a lot here from people who have really struggled with thyroid and non-thyroid issues, and I'm always amazed at how everyone just "pushes through" and doesn't let their health issues get in the way of living. You are way too young to let something like this change your life so dramatically. You are in the prime of your life. Continue addressing your health issue AND continue living your life!


Thanks for your reply.

I would love to continue addressing my health issue if I knew how to. I just don't seem to be getting anywhere with the doctors - this is the third move I have done since the thyroid stuff has cropped up.


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## CA-Lynn (Apr 29, 2010)

Here are the steps:

1. Develop a collaborative relationship with a doctor who specializes in this condition.

2. Give the drugs a chance.

3. Have a positive outlook.

4. Develop a passion about something [OTHER THAN the thyroid] and get involved.

5. Live life as normally as possible.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Here are the steps:
> 
> 1. Develop a collaborative relationship with a doctor who specializes in this condition.
> 
> ...


Thank you for these steps.

1. I have got a relationship with a doctor who speciailises in the condition but I only see them once every six months. So how I develop a collaborative relationship with them when I hardly see them I really don't know.

2. When I was taking the levothyroxine consistently from May last year until October last year I felt worse. When I took myself off them I felt much better and when I went back on them with my doctor's help I felt worse again. I don't know how much of a chance I can give them.

3. I have more of a positive outlook on life at the moment and haven't been as depressed - why that is I don't know.

4. I have developed a passion for fundraising and charity work and working towards being a fundraiser.

5. I have begun to live life more normally as I have been doing more things around the house and getting out and about.


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## CA-Lynn (Apr 29, 2010)

And job hunting?


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> And job hunting?


Yes. I have been applying for temp work to get me back into work.


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## CA-Lynn (Apr 29, 2010)

Why not do a pro-active approach and go online at company websites for positions and apply directly?


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Why not do a pro-active approach and go online at company websites for positions and apply directly?


I did do some more pro-active job hunting by inquiring into one particular company and they have given me advice in my next steps with applying for work. I have also gone into recruiting agencies and handed them my CV.


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## Jo853 (Aug 16, 2013)

I have found this through a fellow Hashimoto's sufferer's website, given to me by a very understanding person who too knows the trials and tribulations of Hashimoto's:

I am Hashimoto's Disease

"Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.
I'm so sneaky--I don't always show up in your blood work.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Shortness of breath or "air hunger?" Yep, probably me.
Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ?

Hives? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of thyroid hormone medication for YOU.....Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto's Disease."

(Hashimoto's article courtesy of Grant Lee Nolin from her Thyroid Sexy FB page.)

My point being for all to understand that even though us Hashimoto's patients take medication and our antibodies are only just down that doesn't mean to say we do not have bad days.

I may not have had this illness for very long but I do have my sources.


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## Jo853 (Aug 16, 2013)

May 2014 results

TSH - 5.3 (0.2-4.2)
FT4 - 18.1 (10-22)
FT3 - 5 (3.1-6.8)
Ferritin - 10 (30-400)
Folate - 5.8 (4.6-18.7)
Vitamin B12 - 340 (180-900)

No ferritin supplement given
Thyroxine not increased


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## Octavia (Aug 1, 2011)

Jo, your Ferritin level REALLY needs to be addressed. What did the doctor say about it? It's off-the-charts low. Your Ferritin level may be a primary reason that you don't feel good.


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## bigfoot (May 13, 2011)

Agree -- that is low, low, low. What did the doc say about it? Also surprised they didn't increase the thyroid meds a bit as well.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Agree -- that is low, low, low. What did the doc say about it? Also surprised they didn't increase the thyroid meds a bit as well.


This was what was said about the ferritin:

- The doctor's receptionist called me on the Thursday about the results. She said the ferritin was low and that I needed supplementation. Receptionists can only say so much over the phone as they are not medically qualified. She then said my doctor wants my appointment to be moved from 4th June to 29th May to discuss the ferritin result, mainly, although she then called me a second time a few minutes later to say the thyroid had come back abnormal too. She asked me to collect a prescription from the chemist for the ferritin but this would not be available until the following day...

- I had the endo appointment the day after and she accessed my test results which showed the low ferritin. She asked me if I was receiving supplementation for the ferritin and I said yes but the tablets although were ones I had taken before I did not like due to the taste and I wanted to get a liquid supplement. The endo then said I did not need to take the iron supplementation if I did not want to.

- When I returned home I knew that since the doctor had prescribed me the iron supplementation in the first place I did not want to go against them, so I picked up the prescription from the chemist but asked if I could have the supplement in liquid form. They refused to change it as the doctor had ordered the prescription to be in tablet form and so my best bet would be to go back to my doctor to have them change the script. So I went back to have the tablet form changed to liquid form and the doctor refused to change it, saying that they only did it in tablet form for adults (liquid form was available but for babies and so would be too weak for me to take) and that I had to just "try it".

The doctor put me on Ferrous Fumerate 210mg taken 3 times a day but I have bought an iron supplement that is flavoured with honey to help with taste issue.

Re the thyroid issues - endo seemed to think my thyroid meds do not need to be increased but it was my doctor who conducted the thyroid function tests, not the endo. So I have continued to take the thyroid meds at the 125mcg dose until told otherwise.
However my endo is interested in my FT3 result and has booked me in for a repeat blood test for that - provided that the labs have not thrown my blood sample from last week away.


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## bigfoot (May 13, 2011)

Unfortunately, I'm not well-versed enough in the Ferritin area to know the difference between liquid vs. tablet iron supplements. Not sure if one is better than the other. Is there a reason you want the liquid variant? Anyway, glad they have recommended that you take some iron nonetheless! Also glad to hear the endo is interested to see your FT3 results. That is promising!


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Unfortunately, I'm not well-versed enough in the Ferritin area to know the difference between liquid vs. tablet iron supplements. Not sure if one is better than the other. Is there a reason you want the liquid variant? Anyway, glad they have recommended that you take some iron nonetheless! Also glad to hear the endo is interested to see your FT3 results. That is promising!


Hi, yes, the reason I want the liquid variant is simply the taste issue. Swallowing Ferrous Fumerate tablets is like swallowing a bowlful of coins. It's metallic and made me physically sick - one of the side effects. But I didn't think there was much point in saying that to the doctor because I assumed all they would say is "try it" or "ride it out" - words to that effect. Or suggest things to deal with the vomiting/nausea.

I did try a different iron supplement which was iron-fortified water and Vitamin C was added to that but it only raised my ferritin levels from 15 to 21 within 3 months. Also, I shopped around on the internet and came across an iron supplement called Feroglobin which has zinc, magnesium, B12 and other vitamins and minerals as well as iron so I opted for that instead.

When the doctor called me the other day she highly emphasized my ferritin level so they see it as a bigger deal than my endo who seemed to have just batted the issue away.


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## bigfoot (May 13, 2011)

Jo853 said:


> It's metallic and made me physically sick - one of the side effects. But I didn't think there was much point in saying that to the doctor because I assumed all they would say is "try it" or "ride it out" - words to that effect. Or suggest things to deal with the vomiting/nausea.


Not trying to be rude here, just a friendly, open suggestion FWIW -- honestly, if you don't tell the doctor stuff like this, they aren't going to know it. For as much as doctors can be frustrating at times, they aren't mind readers. There needs to be open lines of communication both ways to be healthy. They may have very well given you a liquid form to take had they known those details. When you contacted their office after the fact, you have to factor in office staff, receptionists, medical assistants, nurses, etc. It's like the game of telephone, and by the time your message reached the doctor, they were probably left scratching their head, wondering why on earth you were trying to get the prescription changed.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Not trying to be rude here, just a friendly, open suggestion FWIW -- honestly, if you don't tell the doctor stuff like this, they aren't going to know it. For as much as doctors can be frustrating at times, they aren't mind readers. There needs to be open lines of communication both ways to be healthy. They may have very well given you a liquid form to take had they known those details. When you contacted their office after the fact, you have to factor in office staff, receptionists, medical assistants, nurses, etc. It's like the game of telephone, and by the time your message reached the doctor, they were probably left scratching their head, wondering why on earth you were trying to get the prescription changed.


Well I didn't want to be causing too much of a fuss with the iron issue. I didn't want to be inconveniencing them.


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## CA-Lynn (Apr 29, 2010)

You need to be your own advocate. That means becoming assertive. If you want something, ask for it in a clear and direct manner.

Remember: the doctor and staff are basically your employees. They work for you, the taxpayer.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> You need to be your own advocate. That means becoming assertive. If you want something, ask for it in a clear and direct manner.
> 
> Remember: the doctor and staff are basically your employees. They work for you, the taxpayer.


Thanks for the reply.

Unfortunately assertiveness is not my strong point.

I have a doctor appointment tomorrow to discuss a hand tremor I have had for three weeks. I am sure it's down to the medication but I can't be sure. But it's been frustrating for me as I have had it for three weeks and I wasn't able to see a doctor sooner as they had no earlier appointments.

I would just feel terrible if I walked into the doctor's room and said "I have had this hand tremor for 3 weeks and was unable to see a doctor sooner as there were no appointments. What do you think is causing it please?" That to me sounds a bit blunt but that's just me.


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## Octavia (Aug 1, 2011)

I'm not a doctor, but I would be willing to bet that doctors very much prefer that their patients be direct (except with self-diagnosis, which is another issue altogether). Don't be afraid to advocate for yourself!


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## Jo853 (Aug 16, 2013)

Octavia said:


> I'm not a doctor, but I would be willing to bet that doctors very much prefer that their patients be direct (except with self-diagnosis, which is another issue altogether). Don't be afraid to advocate for yourself!


Ok, thanks for the reply. this whole assertiveness thing is going to be a momentous thing for me to do as I have been to pretty much every appointment going along with what the doctor tells me or suggests to me as I have always felt that they know my body better than I do as they're the experts.

That as well as me having zero self confidence but I do have so many hang ups - worrying about what people think when they see me and suchlike. I do have confidence issues, I'm ready to admit that, but it's something I've always had and the times when I do advocate for myself especially with the endo's secretary are when my attempts to stand up to myself backfire and I am then seen to them as needy. I also worry that if I come across direct that will be seen as being pushy.

When they say nothing to me about my problems or symptoms after I tell them what they are, they then say "we'll give it another week," and I see them a week later if the problem is still there and they say "we'll give it another week". But that was what they said before...

I guess with me I try very hard to please everyone. I am a people pleaser and I try to be nice to everyone whether I know them or not. And to me being assertive and an advocate is kind of like going against my nice as pie demeanour. I'm shy and quiet. Assertive and clear/direct are my opposites.

This will be hard.


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## Jo853 (Aug 16, 2013)

Had appointment with doctor today. He has increased my thyroid medication to 125mcg and given me a liquid based laxative to fix the constipation despite me eating more fruit and veg. He doesn't seem concerned that I get blood in my bowel movements during a period and I left the hand tremor issue as it only affects me when I stretch my arm out straight in front of me.

He is basing the treatment on TSH alone however. He says I am under treated going by last test but he didn't say anything about the FT4. Oh and apparently my Vitamin D is now normal but no number.


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## jenny v (May 6, 2012)

> this whole assertiveness thing is going to be a momentous thing for me to do as I have been to pretty much every appointment going along with what the doctor tells me or suggests to me as I have always felt that they know my body better than I do as they're the experts.


This is me being blunt (lol!): you've followed everything the doctors have said up until this point, yes? And how do you feel physically right now after following everything they've said? Looking back on your posts, I'd venture to say you feel pretty crappy.

At a certain point, in order to feel better, you're going to have to get out of your comfort zone and start believing that you know your body better than they do (you're the one actually living in it), and start pushing them to help you feel better. Honestly, if you don't, you're just going to be stuck in this cycle.

One of the best things that came from my disease was that I learned how to stand up for myself and make myself heard. It's not rude and it's not pushy and it's not "not being nice". Your thoughts and opinions on your health are just as important as the doctor's.


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## Jo853 (Aug 16, 2013)

Yes


jenny v said:


> This is me being blunt (lol!): you've followed everything the doctors have said up until this point, yes? And how do you feel physically right now after following everything they've said? Looking back on your posts, I'd venture to say you feel pretty crappy.
> 
> At a certain point, in order to feel better, you're going to have to get out of your comfort zone and start believing that you know your body better than they do (you're the one actually living in it), and start pushing them to help you feel better. Honestly, if you don't, you're just going to be stuck in this cycle.
> 
> One of the best things that came from my disease was that I learned how to stand up for myself and make myself heard. It's not rude and it's not pushy and it's not "not being nice". Your thoughts and opinions on your health are just as important as the doctor's.


I'd rather people be blunt, as I am not. 

Yes I've been doing everything they've said, but they don't agree with me having private blood tests. Since following everything they have said I have felt pretty bad but they are blaming the way I have been feeling on poor diet, stress and mental illness. I've doctor hopped 3 times since this thyroid thing and I thought I'd gotten somewhere today since my meds have been increased. So this not progress? I thought having my medication increased is something good but by the looks of things I may have to move doctors again if this is not progress, start from scratch and go to my first appointment and say that I want to advocate my health.

I thought I do know my body since I went to the consultant room today and started off by saying "I really do not feel much better and have been getting other problems." The doctor I saw says that the constipation may clear up with the new increased dose of medication, but, I was on 125mcg before and that did nothing for it.


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## bigfoot (May 13, 2011)

Jo853 said:


> Yes I'd rather people be blunt, as I am not.
> 
> Yes I've been doing everything they've said, but they don't agree with me having private blood tests. Since following everything they have said I have felt pretty bad but they are blaming the way I have been feeling on poor diet, stress and mental illness. I've doctor hopped 3 times since this thyroid thing and I thought I'd gotten somewhere today since my meds have been increased. So this not progress? I thought having my medication increased is something good but by the looks of things I may have to move doctors again if this is not progress, start from scratch and go to my first appointment and say that I want to advocate my health.
> 
> I thought I do know my body since I went to the consultant room today and started off by saying "I really do not feel much better and have been getting other problems." The doctor I saw says that the constipation may clear up with the new increased dose of medication, but, I was on 125mcg before and that did nothing for it.


Blood tests are blood tests. They are still run by a lab and have to be collected in a certain way, processed in a certain way, and results given out that align with some sort of industry standard. I can't possibly imagine why the docs would be against having additional data, regardless of where it comes from. In fact, since you are probably going outside of the subsidized health care system, I don't see why they should even care how you spend your own money.

Provided this doctor is a good listener and is open-minded, there should be no reason to switch again. If, however, this doctor is ignoring you and not addressing your valid concerns, then of course that choice is entirely up to you. It is good to hear they are raising your dose of T4 -- obviously you need to do something, your TSH is swinging in the breeze. It would be nice to have them add a little T3 and see where that gets you, too.

You might even have a little heart-to-heart talk with the current doc and see how that goes. And if there is a treatment you want to try, or a test you want to run, you can always politely (but assertively) ask. The worst they can say is no, and if that's the case, you get a better idea of where you stand.

I was very much the same way as you, always wanting to please everyone, doing whatever the doctor said, and trusting that they would make the right decisions. Doing that left me with years of unanswered questions, less than optimal treatment, and feeling awful. For your own sake and your family's sake, please don't make the same mistakes that I (and many others) have made. Life is too short!


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Blood tests are blood tests. They are still run by a lab and have to be collected in a certain way, processed in a certain way, and results given out that align with some sort of industry standard. I can't possibly imagine why the docs would be against having additional data, regardless of where it comes from. In fact, since you are probably going outside of the subsidized health care system, I don't see why they should even care how you spend your own money.
> 
> Provided this doctor is a good listener and is open-minded, there should be no reason to switch again. If, however, this doctor is ignoring you and not addressing your valid concerns, then of course that choice is entirely up to you. It is good to hear they are raising your dose of T4 -- obviously you need to do something, your TSH is swinging in the breeze. It would be nice to have them add a little T3 and see where that gets you, too.
> 
> ...


Thanks for reply.

Since spending money on private blood tests (that the UK healthcare system could do for free) my doctors have been telling me off for spending money on private blood tests and insist on me having them done through the NHS. I have explained to my endo's secretary and the practice nurse that the NHS do not test FT4 or FT3 if TSH is normal. They then say that they should do and I then say that they don't and then they leave it at that and end up sounding surprised. But if I cannot get a reading of my thyroid hormone levels when they only do TSH when normal there was no other option.

The doctor I saw today seemed to be a good listener but focused more on what I ought to be eating (which I have been doing more of to be fair) - things I have eaten are avocados, peaches, bananas, oranges, raspberries, more water, chicken, veg, sunflower seeds. And last night I was constipated three times and felt like I wanted to crash out.

T3 is not readily prescribed on the NHS in the UK so I would have to look to do this through another endo, possibly. The endo I currently see works under the head of the endocrinology department and I have been told that neither of these people prescribe T3 on the NHS. So I may have to self-medicate. Also have heard nothing back from the endo's secretary regarding the thyroid test results I sent to her.

Vitamin D level is apparently normal but I have no number. I hope this is on my results.

I told my current doctor that when the March thyroid function test was done with my TSH at 1.87 I pointed out that it wasn't my TSH I was worried about but my FT4 and FT3. So they noted the results in my file. That was the last I heard about it from them. Then I spoke to my endo who was interested in my FT3 result in particular and was looking to get hold of the same blood sample so that she could get her lab to test it again. And that was the last I heard about that.

I don't know what other tests/treatments to look into. Tests I have thought about are:

- Antibody tests (TPO and TG) but not sure how often is too often.
- ANA profile (I came up positive for ANA but no disease association was found. However, I was not tested for every single ANA. I was tested for Anti-Jo1, Anti-Sm, Anti-Sla and Anti-Ro but not Anti-Centromere.)
- FT3 (can be done on the NHS but I think I have to meet the doctors labs halfway by paying for it. Also there is no guarantee that the labs will still do it if the endo/doctor asks for it)
- Reverse T3 (I am reluctant to pay a fortune for this but I heard it could be valuable)

These are the only ones I know are most often requested.

Treatments I have thought about are:

T3 - This is very, very hard to get hold of on the NHS (UK healthcare system) and there are very few endos/doctors keen to prescribe it. I could get it privately as my friends at support group use an international site to acquire the T3. I have been tempted to get hold of it too, more than once.

Umm that's all I know in terms of tests/treatments..


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## CA-Lynn (Apr 29, 2010)

OK, Jo, let's play a game. Let's say that you're the mother of a 30 year old daughter who is feeling crappy and thinks doctors know it all. Your make believe daughter doesn't know how to stand up for herself and you can see that it's imperative the she is her own advocate when it comes to her health.

So what would you tell your daughter? [This is what you should be telling yourself.]


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> OK, Jo, let's play a game. Let's say that you're the mother of a 30 year old daughter who is feeling crappy and thinks doctors know it all. Your make believe daughter doesn't know how to stand up for herself and you can see that it's imperative the she is her own advocate when it comes to her health.
> 
> So what would you tell your daughter? [This is what you should be telling yourself.]


I wouldn't know what to tell my daughter if I had one.

Going by experience, my mum has never told me to stand up for myself and neither has anyone in my family for that matter. I did attempt to stand up for myself in one doctor's appointment by telling the doctor I did some research on the internet and he laughed.

It's clear that the doctor I saw Friday did nothing spectacular even though he agreed to increase my meds and I was being an advocate then by saying I still did not feel well and that my constipation had been worse.

At the very least I would tell my daughter (and this is just my own initial thoughts) to look at educating the doctor she is seeing in autoimmune illness. That was all I could come up with. That's not a good answer actually.


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## CA-Lynn (Apr 29, 2010)

Well, what you've been doing so far hasn't worked, has it? You can choose to be a victim or be in control.


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Well, what you've been doing so far hasn't worked, has it? You can choose to be a victim or be in control.


I thought what I had done had worked since my endo wants to look at my T3 result as I showed her the result from last time and I had my T4 medication increased by my doctor.


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## Jo853 (Aug 16, 2013)

I have rethought my options and looked at other ways to be more of an advocate to my health.

First I will contact my endo to get hold of my May blood test results as I have waited 2 weeks for them. Failing that I will talk to the department manager and failing that I will go to my own doctor practice and acquire them.

Then I will send an email to my endo regarding my FT3 result as I have heard nothing about that. Also that my most recent FT3 result is 56% in range and should be much higher therefore a request for a script for a trial of T3 is not unreasonable.

Thirdly I will request, in the same email, that my thyroid antibodies be checked.


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## Jo853 (Aug 16, 2013)

I emailed the healthcare services with regards to what is going on with the care and treatment I've received.

This is the email to the endo's secretary:

"Hi, further to our conversation please see attached both private blood test results done through Blue Horizon. I believe this private laboratory is used by yourself, too.
I had FT3, FT4, TSH, Total T4, Anti-TPO and Anti-TG antibodies done in the first blood test and I had FT3, FT4 and TSH done in the second blood test.

I await your response."

Well, of course I had no reply for a week and so I got in touch with the patient liaison services who forwarded my chaser email to the endo's secretary regarding the blood tests. This is what the endo herself has written:

"The FT3 is converted from thyroxine taken orally by enzymes within the body hence the increase in levels in May. Although the reference ranges are the same for local and private tests, I'm not sure if the assays are the same. Our labs are under constant recalibration to reduce errors but I'm not sure of standards for the private lab. The anti -TG antibodies may suggest that you still have functioning thyroid tissue, albeit inadequate."

Now, I am sure that the private lab I used is what the endos use as well. And when I had my FT3 tested in November the private assay remained the same. And why are they now bringing the Anti-TG antibodies into topic when the Anti-TPO antibodies are more in positive range than the Anti-TG? Unless my maths is incorrect the Anti-TPO antibodies are out of positive range by 500 international units and the Anti-TG are out of positive range by 112,000 international units!

I have now been offered a transfer to another endo but this one is not local.

I also took the liberty of going to my doctor's practice. Things reached a head for me today and my attitude was "I have a right to those results, it's my body, not theirs and I need to know what they are." And so I asked for my blood test results in a direct, assertive and clear way. "Hi, may I have a copy of my blood test results please?" Printed off and handed to me with no questions asked as opposed to waiting 2 to 3 days for a copy of the same results to be posted to me through the patient liaison services.

So, since I have the latest blood test results I will post them here and include them in my signature:

Total 25 OH Vitamin D - 59
25-Hydroxyvitamin D2 - 5
25-Hydroxyvitamin D3 - 54

(<25 severe Vitamin D deficiency)
(25-50 Vitamin D deficiency)
(50-75 Vitamin D sub-optimal)
(>75 Adequate Vitamin D)

Doctor told me Vitamin D was normal - but sub-optimal is not normal! So the Vitamin D3 spray is no good, I take it, or it's done a minimal amount of good despite me taking it from January through up to now...Not happy that this was overlooked.

Other things tested have already been posted in my signature except the red blood cell count which is 4.82 (3.80-4.80) This the fifth time out of five this has been elevated yet the doctors don't say anything! Surely it's an inflammation thing? And there is a red flag by it! I am tempted to write an email to the patient liaison services about this. I could have some underlying disease as well as the thyroid issue and this has been overlooked too often. This is my body, not theirs.


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## bigfoot (May 13, 2011)

Jo853 said:


> I also took the liberty of going to my doctor's practice. Things reached a head for me today and my attitude was "I have a right to those results, it's my body, not theirs and I need to know what they are." And so I asked for my blood test results in a direct, assertive and clear way. "Hi, may I have a copy of my blood test results please?" Printed off and handed to me with no questions asked as opposed to waiting 2 to 3 days for a copy of the same results to be posted to me through the patient liaison services.


BOOM. And that's how it's done. Good job on taking the initiative!  Polite but with an obvious interest in the matter of your own health.

My honest opinion is that e-mail isn't usually the best way to reach practitioners. It's very informal and easily dismissed, lost, forgotten, put off, or neglected on their end. Much better to speak in person whenever possible, or else via phone. I have also discovered that even the best doctors generally don't like to be peppered with questions outside of appointments. That forces them to pull your chart and adds extra work on top of what is likely a very busy practice. Instead, I try to keep my non-urgent questions and requests written down and bring them up at appointments. I'll try to order them from most important to least important, so that if a little issue gets missed, it's no big deal. Now obviously, if something is really important (bad reaction to medication, question on dosing, etc.) I will get ahold of the office ASAP to get clarification.

Your Vitamin D3 level is not the greatest, but not totally awful, either. It could probably use more supplementation, and with something stronger than a nasal spray. (For comparison, my Vit. D3 reading was in the 20s.)


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## Jo853 (Aug 16, 2013)

bigfoot said:


> BOOM. And that's how it's done. Good job on taking the initiative!  Polite but with an obvious interest in the matter of your own health.
> 
> My honest opinion is that e-mail isn't usually the best way to reach practitioners. It's very informal and easily dismissed, lost, forgotten, put off, or neglected on their end. Much better to speak in person whenever possible, or else via phone. I have also discovered that even the best doctors generally don't like to be peppered with questions outside of appointments. That forces them to pull your chart and adds extra work on top of what is likely a very busy practice. Instead, I try to keep my non-urgent questions and requests written down and bring them up at appointments. I'll try to order them from most important to least important, so that if a little issue gets missed, it's no big deal. Now obviously, if something is really important (bad reaction to medication, question on dosing, etc.) I will get ahold of the office ASAP to get clarification.
> 
> Your Vitamin D3 level is not the greatest, but not totally awful, either. It could probably use more supplementation, and with something stronger than a nasal spray. (For comparison, my Vit. D3 reading was in the 20s.)


Thanks for congratulating me on that.  I find that when I get frustrated with medical issues that are not properly dealt with that is when my assertiveness is at its highest. I was like that with the missing ultrasound report. The receptionist got snappy with me about why the report never made it to my doctor's. It simply got lost in transit and the doctors assumed as they did not hear back about it then it was all normal and no notes were made. When I read the notes it said "thyroid mildly enlarged". I felt a deep, heavy burning feeling in my guts - that sounds a bit poetic LOL - but I could tell I felt just a tiny bit miffed. I then marched to my practice with the copy report, explained my situation to the receptionist and she told me she would photocopy it as evidence and put it in my file. Job done! I ought to do more of that as I seem to get somewhere with it. 

I think that was what happened with my initial email to my endo's secretary. The only thing is, I am not due to see my endo again until another 6 months (could be longer depending on how often they decide to change my appointment...) so would I need to direct any other questions to my doctor? I'm a bit wary about raising thyroid issues with doctors as they're not as specialized as an endo would be. I did leave messages with my endo's secretary before but it took ages for my endo to get back to me and sometimes the secretary would get back to me instead and not go into a lot of detail.

I have had symptoms that are indicative of a reaction to medication but I can't be absolutely sure. I'm not sweating a lot or anything like that but I'm getting a mixture of hypo and hyper symptoms. It is warmer so it could be a reaction to the warmer temperature. But I have a blood test booked for this week so maybe something will show up.

Sorry, the Vitamin D supplement I take is a sublingual spray and is 3000IU. Maybe a stronger one might help?


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## Jo853 (Aug 16, 2013)

I'm a bit worried now as I've been very happy with my weight gain and as hypothyroidism causes it, it might not be such a good thing after all. Maybe I ought to not accept the weight gain as a positive...


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## Jo853 (Aug 16, 2013)

Just one quick question: why does FT3 go down when taking Levothyroxine? Apologies for the risk of sounding ignorant.


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## bigfoot (May 13, 2011)

As far as I understand it, and I'm no expert, there are various feedback loops going on in the endocrine system. Your body without any external thyroid hormone is probably struggling and working overtime to keep up on a daily basis. Once you introduce external hormone, your body is going to slow its own natural production and conversion. So the trick is to take enough external hormone to not only suppress the antibodies (and thus the autoimmune attack), but also replace what your body was making originally and needs to function. My first assumption stopping by the forums a few years ago was that my body would continue to put out a certain amount of hormone, and that I was just supplementing it. Thanks to the good advice and info here, I learned that this is not the case.

Your FT3 was tested three different times. I don't see a FT3 result from *before* you started taking levothyroxine. So we don't really know what your body was doing on its own for a baseline with no meds. For all we know, that high FT3 of 5.5 in Nov. 2013 was from taking the 125 mcg of levothyroxine and giving your body thyroid hormone to work with. Then it dipped down to 4 in March 2014 (but you had only recently started back up on levothyroxine), and is now back up to 5 in May 2014. So it appears to be climbing up again now that you are on T4 meds. The million dollar question is whether or not you are properly converting T4 -> T3. Hard to say without keeping an eye on future labs and running things like a Reverse T3 test.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> As far as I understand it, and I'm no expert, there are various feedback loops going on in the endocrine system. Your body without any external thyroid hormone is probably struggling and working overtime to keep up on a daily basis. Once you introduce external hormone, your body is going to slow its own natural production and conversion. So the trick is to take enough external hormone to not only suppress the antibodies (and thus the autoimmune attack), but also replace what your body was making originally and needs to function. My first assumption stopping by the forums a few years ago was that my body would continue to put out a certain amount of hormone, and that I was just supplementing it. Thanks to the good advice and info here, I learned that this is not the case.
> 
> Your FT3 was tested three different times. I don't see a FT3 result from *before* you started taking levothyroxine. So we don't really know what your body was doing on its own for a baseline with no meds. For all we know, that high FT3 of 5.5 in Nov. 2013 was from taking the 125 mcg of levothyroxine and giving your body thyroid hormone to work with. Then it dipped down to 4 in March 2014 (but you had only recently started back up on levothyroxine), and is now back up to 5 in May 2014. So it appears to be climbing up again now that you are on T4 meds. The million dollar question is whether or not you are properly converting T4 -> T3. Hard to say without keeping an eye on future labs and running things like a Reverse T3 test.


Thanks for explaining that to me. 

I had my blood test done today for thyroid so I'll wait to hear back about that - but, I was intermittently taking the Levothyroxine in November 2013 due to what I felt were hyper symptoms.

If only back when that blood test back in May 2013 detected FT3 I would've known - but I didn't and I will never know what my body was doing at that time.


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## Jo853 (Aug 16, 2013)

Hi

My period started today and it is awfully red and watery - a stark contrast to the thick, dark, clotted blood I get every month. Easy to blame the thyroid I know, but since my thyroid hormone levels last recorded were high, just wondering if I could be going hyper? Can only hope that the blood test done today shows something up as this blood is weird.


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## bigfoot (May 13, 2011)

If you suspect being hyperthyroid, it could be one of two things: 1) overmedication, or, 2) hyperthyroidism due to Graves' or else Hashi's cycling between hypo/hyper.

Thyroid Stimulating Immunoglobulin (aka TSI, *not* the same as TSH) should be checked, as well as Thyroid Receptor Antibodies (aka TRAb), to rule out Graves'.

It is really difficult to diagnose or guesstimate at whether you are hypo or hyper. Many signs & symptoms can be the same for both. It takes the blood tests above, plus an astute doctor to spot these things.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> If you suspect being hyperthyroid, it could be one of two things: 1) overmedication, or, 2) hyperthyroidism due to Graves' or else Hashi's cycling between hypo/hyper.
> 
> Thyroid Stimulating Immunoglobulin (aka TSI, *not* the same as TSH) should be checked, as well as Thyroid Receptor Antibodies (aka TRAb), to rule out Graves'.
> 
> It is really difficult to diagnose or guesstimate at whether you are hypo or hyper. Many signs & symptoms can be the same for both. It takes the blood tests above, plus an astute doctor to spot these things.


Hi there, thanks for explaining. Can't be Graves' if I have Hashi's, surely?

TSI has never been tested, doubt the doctors here in the UK know about it. Maybe ask for it to be tested as a suggestion?


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## bigfoot (May 13, 2011)

I believe it's possible to have both. Or to have Hashitoxicosis. Something that might be worth looking into. I think the TSI test is a sub-test of the larger TRAb panel. So, perhaps they are familiar with the TRAb testing. Hard to decipher many of these test names and abbreviations, as they all start to sound the same!


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## Jo853 (Aug 16, 2013)

bigfoot said:


> I believe it's possible to have both. Or to have Hashitoxicosis. Something that might be worth looking into. I think the TSI test is a sub-test of the larger TRAb panel. So, perhaps they are familiar with the TRAb testing. Hard to decipher many of these test names and abbreviations, as they all start to sound the same!


LOL yes, I'm with you on the test names and abbreviations starting to sound the same!! I am away on holiday for a week (where I am has wifi, just that my doctor practice isn't local) so I will not hear about my bloods until the week after. So, if I arrange an appointment with a doctor for the week I return home and suggest a TSI test, that wouldn't sound unreasonable, I hope. Although now I doubt a Hashi or Hashitoxicosis issue now because I got outside (it has been very warm here lately even in the evenings) and I easily felt the cold. I was actually shivering for the first time in 3 weeks! I think my body is playing tricks on me and it now can't make up its mind about the temperature being hot or cold...


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## Jo853 (Aug 16, 2013)

Since starting the new increased dose of thyroxine I'm finding it hard to take it along with the other medications I take as well as keeping the supplements away from the thyroxine, taking the thyroxine on an empty stomach and timing it all. I've also been told I'm not taking the thyroxine with enough water. I have been splitting the dose of thyroxine too to help me get used to the new increase.

What I do each day:

9am - drink tea with milk. 
10.30am - take levothyroxine 75mcg so 25mcg and 50mcg with a little bit of water, not 1 glass or 1 cup, literally a bit. 
1.30pm - lunchtime. 
2.30pm - iron supplement and vitamin D I take together as the vitamin D is mint flavour and masks the iron taste when I spray the vitamin D under my tongue. 
6.30pm - dinner time. 
Between 7pm and 9pm I may fit in other drinks, eg tea with milk, hot chocolate etc. 
11pm - take levothyroxine 75mcg so 2nd lot of 25mcg and 50mcg in another bit of water. Then I sleep.

I like to start my day with a cup of tea with milk but because the levothyroxine can't be taken with milk containing products I don't exactly know, or I've possibly forgotten, how long I need to leave eating or drinking milk products before and after the levothyroxine. So at times I drink my tea with milk first to help wake me up and take the levothyroxine about an hour or so later to safeguard me.

I do know that I need to take iron away from the levothyroxine for 4 hours but is it safe to take vitamin D with the iron?

Do I need to take the levothyroxine with a glass of water rather than letting the tablets dissolve in the little drop of water I put them in? I wasn't aware of how much water I need to take them with, the instructions just state take with water, not how much.

Thanks


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## bigfoot (May 13, 2011)

Jo853 said:


> Do I need to take the levothyroxine with a glass of water rather than letting the tablets dissolve in the little drop of water I put them in? I wasn't aware of how much water I need to take them with, the instructions just state take with water, not how much.


You should be taking your levothyroxine by swallowing it with at least 8 oz. of water, on an empty stomach (1/2 hour or more prior to a meal, or else 2-3 hours after a meal), and preferably 3-4 hours away from other supplements and medications. First thing in the morning or at bedtime works for many of us. Whatever you choose to do, please be consistent. See this link: http://www.rxlist.com/levothroid-drug/patient-how-to-take.htm

I don't know who advised you to dissolve your levothyroxine pills, or how long you have been doing this, but keep in mind that levothyroxine is absorbed through the GI tract (hence, better on an empty stomach). If it wasn't based on your doctor or pharmacist's advice, I'd stop doing that immediately.

It's quite possible that you are shorting yourself a lot of medication by dissolving it like that. And it's also very possible that your labs aren't going to be accurate because of it. All of which may add up to prolonging your difficulties in getting optimized and euthyroid, and thus feeling better. Not a fun position to be in by any means.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> You should be taking your levothyroxine by swallowing it with at least 8 oz. of water, on an empty stomach (1/2 hour or more prior to a meal, or else 2-3 hours after a meal), and preferably 3-4 hours away from other supplements and medications. First thing in the morning or at bedtime works for many of us. Whatever you choose to do, please be consistent. See this link: http://www.rxlist.com/levothroid-drug/patient-how-to-take.htm
> 
> I don't know who advised you to dissolve your levothyroxine pills, or how long you have been doing this, but keep in mind that levothyroxine is absorbed through the GI tract (hence, better on an empty stomach). If it wasn't based on your doctor or pharmacist's advice, I'd stop doing that immediately.
> 
> It's quite possible that you are shorting yourself a lot of medication by dissolving it like that. And it's also very possible that your labs aren't going to be accurate because of it. All of which may add up to prolonging your difficulties in getting optimized and euthyroid, and thus feeling better. Not a fun position to be in by any means.


Thanks for reply.

I was taking the levothyroxine in the morning but because I'm usually tired in the morning when I ought to take it I often need a drink to help wake me up. Coffee or tea does this. Because I need to take the Levo on an empty stomach I then have to give it another hour or so before I can then take the meds.

I take the iron with vit c but at a time when I do not drink milk and at least 4 hours away from the levo.

I take my second lot of levo in the evening which I don't like doing as my stomach isn't exactly empty. If the time is 11pm when I decide to take the levo but I would have eaten at 7 for example, there would still be food in my body?

My doctor didn't tell me to take my levo like that and I didn't realise that the way I've been taking it has a negative impact on me. I saw the tablet dissolve in the water and I thought, oh good, the pharmacological company has made things easier for me. Maybe not.

I've been doing this since being diagnosed, May 2013.

But I thought my FT4 is now in the top third? So surely the levo has helped it to rise?


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## Jo853 (Aug 16, 2013)

I've had it with the doctors, I've been doing it all wrong since being prescribed the levo and they told me nothing about the FT3 test which I could've had done at the same time as the high TSH of 22. They have kept things from me.


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## CA-Lynn (Apr 29, 2010)

Jo, you need to take some responsibility for this. Every patient needs to step up to the plate, do the research, be knowledgeable about the disease and develop a collaborative relationship with the healthcare provider. Seriously doubt anyone kept anything from you.

You're not the victim here.


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## bigfoot (May 13, 2011)

Jo853 said:


> I've had it with the doctors, I've been doing it all wrong since being prescribed the levo and they told me nothing about the FT3 test which I could've had done at the same time as the high TSH of 22. They have kept things from me.


I agree with Lynn, I don't think it's a conspiracy to keep things from you. I also think you are working within a healthcare system that has you at a disadvantage from the start. This is why it is even that much more crucial to get an understanding of what you are dealing with so you can better advocate for yourself.

We all make mistakes and miss things, it's human nature. No worries. The important point is to get back on the horse and take charge going forward. B)


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## Jo853 (Aug 16, 2013)

CA-Lynn said:


> Jo, you need to take some responsibility for this. Every patient needs to step up to the plate, do the research, be knowledgeable about the disease and develop a collaborative relationship with the healthcare provider. Seriously doubt anyone kept anything from you.
> 
> You're not the victim here.


Thanks, I do know about the Hashimotos and what it does but I have other things going on like the fluctuating weight gain, the heavy periods, the acne, the excess hair, the white spots on my skin and the doctors say nothing.

Is it too much to ask for them to test me for other things?


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## Jo853 (Aug 16, 2013)

bigfoot said:


> I agree with Lynn, I don't think it's a conspiracy to keep things from you. I also think you are working within a healthcare system that has you at a disadvantage from the start. This is why it is even that much more crucial to get an understanding of what you are dealing with so you can better advocate for yourself.
> 
> We all make mistakes and miss things, it's human nature. No worries. The important point is to get back on the horse and take charge going forward. B)


Ok, thanks. I am just worried about being seen as a hypochondriac with the other things mentioned above. My family have said that behind my back and my previous doctor wrote in my notes that I had generalised anxiety disorder due to me suffering chronic pain in my hip - turned out to be a caught hip tendon - which the consultant who operated on me at the time said was lucky to be fixed when it was as it could have progressed to arthritis. And it was misdiagnosed for 6 years.

I have all these things going on still which I know I cannot cover in one 10 minute appointment and I dread having to call the practice re my blood test results next week (I'm currently on holiday) for them to say "they're normal". I don't feel normal and I can't remember the last time I did feel normal.

Maybe take someone with me to the next appointment? What about keeping a symptom diary? Is the doctor likely to want to look at that?


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## Jo853 (Aug 16, 2013)

I called my doctor today as I developed other symptoms over the past few days - spontaneous bleeding from mouth, pinprick red dots appearing under my skin, constipation increasing and white patches/plaques on my fingers and hands. He asked me to come and see him to examine me as he wanted to discuss my thyroid function test which has come back abnormal again despite being on the levothyroxine at any rate. I explained that I am out of the local catchment area so I would be unable to see him, so he said he will contact the local health centre in the area I am staying in as he felt my symptoms need to be looked at pretty soon. I asked him what he thinks it is and although he couldn't see the skin changes over the phone he suspects it is scleroderma as I have had past episodes of raynauds and a positive anti-nuclear antibody result. I then told him that all antibody profiles that are under the anti-nuclear profile were not screened back in January, like the anti-centromere and anti-scl70 for example which are more definitive and he said he will note this in writing to the health centre secretary.

He is requesting an antibody profile that consists of all anti-nuclear antibodies and not just the 5 my endocrinologist chose to test and will talk to me about the thyroid result when I return home as he believes the medication needs more time to work. My symptoms seem to be of greater concern to him at present and he does not think any of my symptoms are down to hypothyroidism but there is a possibility that if it is scleroderma it is quite likely caused by the Hashimoto's.


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## Christine Jane (Jun 3, 2014)

bigfoot said:


> Unfortunately, I'm not well-versed enough in the Ferritin area to know the difference between liquid vs. tablet iron supplements. Not sure if one is better than the other. Is there a reason you want the liquid variant? Anyway, glad they have recommended that you take some iron nonetheless! Also glad to hear the endo is interested to see your FT3 results. That is promising!


I had critically low haemoglobin when I was diagnosed with my Hashi's and PA. 
This extreme low ferritin you have can't be treated with a liquid supplement (and, appealing to your vanity might work better...the liquids can discolour your teeth). There are only a few iron supplements that deliver high enough doses to address severe insufficiencies, so, unless you have studied the label of the honey flavoured supplement and done the maths, I would suggest you just adapt to the taste of the one that is going to do the job. You can't second guess all the decisions your doctor makes and expect the thyroxine treatment to work properly if there are underlying issues that remain unaddressed.


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## bigfoot (May 13, 2011)

Jo853 said:


> Ok, thanks. I am just worried about being seen as a hypochondriac with the other things mentioned above. My family have said that behind my back and my previous doctor wrote in my notes that I had generalised anxiety disorder due to me suffering chronic pain in my hip - turned out to be a caught hip tendon - which the consultant who operated on me at the time said was lucky to be fixed when it was as it could have progressed to arthritis. And it was misdiagnosed for 6 years.
> 
> I have all these things going on still which I know I cannot cover in *one 10 minute appointment* and I dread having to call the practice re my blood test results next week (I'm currently on holiday) for them to say "they're normal". I don't feel normal and I can't remember the last time I did feel normal.
> 
> Maybe take someone with me to the next appointment? What about keeping a symptom diary? Is the doctor likely to want to look at that?


Bold emphasis above is mine. That's the problem. People can't condense months or years of questions, concerns, signs, and symptoms into ten minutes with a doctor. The system is flawed, and unfortunately you, as a patient, have to make lemonade out of the lemons.

Sounds like your other doctor has caught on to some of the skin issues and the thyroid problem(s). That sounds promising, I'd definitely follow up with that doc ASAP.


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## Jo853 (Aug 16, 2013)

Christine Jane said:


> I had critically low haemoglobin when I was diagnosed with my Hashi's and PA.
> This extreme low ferritin you have can't be treated with a liquid supplement (and, appealing to your vanity might work better...the liquids can discolour your teeth). There are only a few iron supplements that deliver high enough doses to address severe insufficiencies, so, unless you have studied the label of the honey flavoured supplement and done the maths, I would suggest you just adapt to the taste of the one that is going to do the job. You can't second guess all the decisions your doctor makes and expect the thyroxine treatment to work properly if there are underlying issues that remain unaddressed.


Hi, thanks for your reply.

When I was last on the iron supplement it didn't seem to discolour my teeth. I have the honey flavoured supplement but I am no good at maths so I just assumed the liquid supplement I took was good enough. Unless...I take more than one dose a day, which I can do as I can take up to 3 a day in total.


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## Jo853 (Aug 16, 2013)

bigfoot said:


> Bold emphasis above is mine. That's the problem. People can't condense months or years of questions, concerns, signs, and symptoms into ten minutes with a doctor. The system is flawed, and unfortunately you, as a patient, have to make lemonade out of the lemons.
> 
> Sounds like your other doctor has caught on to some of the skin issues and the thyroid problem(s). That sounds promising, I'd definitely follow up with that doc ASAP.


Thanks for your reply.

The doctor says I have positive Anti-Centromere antibodies which he says points to CREST syndrome. So I will go back on Thursday and ask for a referral to a rheumatologist if that is my best bet.

New test results from thyroid function are below:

TSH - 2.6 (0.2-4.2)
FT4 - 15 (12-22)
FT3 - 4.3 (3.9-6.7)

Levo has not been increased.


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## Jo853 (Aug 16, 2013)

My results seem a bit low but that's just me.


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