# CFS/ME and Hashimoto's - Medicine Change?



## Viv22 (Sep 3, 2013)

I have been doing loads of research on CFS/ME and Hashimoto's. I finished last week feeling very weak and miserable. I have been bed ridden all weekend - very sad! Trying to muster up the energy to get through work next week.

I read that a lot of patients who take T4 only medication (Levothyroxine) report living their lives with symptoms of ME/CFS because their medication is simply not working.

Research has shown that adding T3 to T4 only medication helps people with Hashimoto's immensely and most report feeling energetic, having better concentration and mood generally.

I'm in the UK and I believe that GPs do not like handing out T3 because it is expensive. Does anyone have any experience in this regard?

Do you think I am on to something here? Any advice would be appreciated.

I simply cannot accept that a year ago I was super healthy and strong and now I am in this frustrating position which I don't want to be in. There has to be an answer.

Free T4: 18.4 (10.3 - 24.5)

TSH: 0.7 (0.4 - 5.5)

FT3: 4 (3.5 - 6.5)

Anti TPO: 890 (0 - 150)

Anti Thyroglobulin: 206 (0 - 150)

Thyroid Receptor Antibodies: 0.34 (0 - 1.5)

Slightly high cholesterol

Slightly low vitamin D

I also have suspicions that I have adrenal fatigue - I am having these tested on Tuesday with a short synacthen test.

Also going through tests for Sjorgens to rule it out.


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## Andros (Aug 26, 2009)

It's hard to keep up when a new thread is started all the time. What does your ultra-sound say about your thyroid? You have some seriously high antibodies.

I agree w/you about the need for exogenous T3. Your FT3 is very low. I think we have discussed this in previous threads?

Hugs,


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## Viv22 (Sep 3, 2013)

I was hoping to attract the attention of people who also suffered from fatigue.

I had an ultrasound and they said that I had several small nodules but that I seemed healthy.


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## Swimmer (Sep 12, 2013)

Wow. Is there anyone who would let you try armour in the UK?


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## Viv22 (Sep 3, 2013)

I'm going in tomorrow to see a GP (mine is on holiday). I believe she is a young GP which concerns me a bit but maybe she will be open minded. I am wondering what dose Armour I should ask for - I am on 75 mg one day and then 100 mg the next Levothyroxine - any ideas? I know she should know but I don't want to leave any stone unturned...


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## Andros (Aug 26, 2009)

What was the description of your nodules? Cystic, solid, calcified rims, vascular?

Sending hugs.


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## Viv22 (Sep 3, 2013)

I have no idea. I went in for an ultra scan for Sjorgens and just asked the lady to check my thryoid. I had no idea there were different types of nodules. Does this make a difference?

In relation to your other post about commenting on my FT3, I do not recall this but even if you had made a comment, I had no idea that low FT3 was a major cause of chronic fatigue.

I am doing more research and probably have more knowledge now than the specialists I have seen. I wish I could find someone in London who actually knew how to treat me.


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## KeepOnGoing (Jan 2, 2013)

I'm in the UK and have just started T3 in addition to T4, so it is definitely available on the NHS.

However, you're right, it IS expensive - but then again, it only seems to come in 20mcg tablets, so I did explain to my GP that, on a dose of 10mcg per day, I only needed 14 tablets each time...

I'm still waiting to see if it helps with the fatigue - my FT3 is below range at the moment, so it might take a bit of a while to rise to something useful, but I can't help thinking it's worth a go.

I haven't even mentioned armour to either my GP or my oncologist - think that might be a step too far for them!


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## Viv22 (Sep 3, 2013)

That's encouraging to hear. What is the name of your meds?


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## KeepOnGoing (Jan 2, 2013)

Liothyonine. That seems to be the only one available in the UK, according to my GP anyway.


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## Viv22 (Sep 3, 2013)

Well, I didn't make it to my GP this morning as I was running late with the adrenal test. Hoping to have results tomorrow.

One of the nurses at the hospital has given me the name of an Endocrinologist in London who she says is very much loved by his patients - his name is Dr Lulsegged. I am arranging a referral to see him. Perhaps he can sort out the medication issues. It would be really good if I could find a good Endocrinologist.

It occurs to me that not only do I have a low FT3 but I also have a low reverse FT3 so apparently this means that I should be taking a F3 medication only!? Going to look into it.

KeepoOnGoing,keep me posted on whether your fatigue is lifted with the Liothyonine. Thanks.


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## Airmid (Apr 24, 2013)

How long has your thyroid been more under control (as in TSH not high, things not out of control with your frees)? If it's only been more recently then certain things like cholesterol and vitamin D will sort themselves out with time.

Cytomel is the trade name of Liothyonine, so if you hear it mentioned know they are one in the same. It is a synthetic form of T3 that can be very effective for patients struggling to bring up their T3 while on a T4 containing drug like Synthroid. Why do they have you on alternating doses of your thyroid medication?

CFS is a complex disease and while T3 more then likely can and does exert an influence over it, I wouldn't be surprise that even with higher T3 numbers there still might be some problems. Plus I would assume that even with T3 it would take a good bit of time to begin to recover as it took it good deal of time for you to get this way to begin with.

See if you can get the results to your ultrasound while you wait around on the Endo. Different types of nodules can mean different things, along with how big they are and it would be good for you to have this information in hand when you see the Endo so you know what to expect.


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## Viv22 (Sep 3, 2013)

Thank you for your response. I really appreciate the advice and information from everyone. I was diagnosed in May last year with Hypothyroidism, then in July, Hashimoto's and since then it has been one hell of a rollercoaster that seems never ending. I am not sure I can handle much more of this. It just doesn't suit me to be so miserable and inactive for so long. I am really fed up!

My legs are so weak, numb and tingly. I am so tired. This cannot be right. I wish I could feel positive but I am feeling so miserable and I am so exhausted from it all. Tomorrow is the lip biopsy. I feel it is a waste of time but I have to rule out Sjorgens. My work have been very patient with me. I am constantly going for this test and that test and I am no closer to what is happening. All I know is that I am not the same energetic, happy soul I used to be. I wish I could be happy again.


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## Airmid (Apr 24, 2013)

My thyroid has caused that numbness/tingling in my hands/arms. It's not very much fun is it?

When my TSH went from 1.1 to 17 in a few months I asked why. I was told it didn't matter. A couple years later I was diagnosed with thyroid cancer, lost a good portion of my thyroid and the remaining piece is laughing at us trying to control it. "It doesn't matter" doesn't work for me anymore. It is painful to go from a vibrant person to feeling as if you've aged decades and can't do the things you used to. I can't work full time anymore. I did for years with both Hashi's and hyperparathyroidism and the pain, fatigue and just overwhelming exhaustion became too much. When I managed a store several years ago there were a few times my employee's threatened to call an ambulance when they saw me if I didn't go directly to a hospital. How embarrassing! Here I was, someone who was always strong, someone who could work through pain, push through anything and things were just getting worse and worse.

Keep fighting. Get a copy of that ultrasound and find out what you're dealing with. Fight to get your T3 higher, even if that means taking something like Cytomel to help boost it. We all deserve the ability to be happy. Sharpen those nails, don't burn your bridges but find a diplomatic way to say you won't take anymore BS.

How did they diagnose your Hashi's? Antibodies or biopsy? The only true way to know is via biopsy.


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## Viv22 (Sep 3, 2013)

I'm so sorry to hear about what you've been through. I really hope that I'm not on the same road. Hashi's diagnosed with antibodies. I am actually going for a biopsy today for Sjorgens. I will speak to them. Thanks.


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## Viv22 (Sep 3, 2013)

So tonight I went to a GP at the practice I use. I had the results for my adrenals faxed over so we dealt with that first. Apparently my adrenals are fine. Well, that's good news at least but it doesn't explain why I cannot put my left foot in front of my right foot. He told me that I am slightly hyper and to reduce my medication to 75 mg everyday (as opposed to 100/75). I told him that I have been here before and that when I changed the medication last time, I went hypo.

The guy was so ignorant when I raised the low T3 issue. I was trying really hard to be diplomatic but I lost it in the end. I was armed with all my research but he just wouldn't listen to me. I told him that I saw that his practice was a "training practice" and that they ought to use my situation for education purposes because I have been suffering for the last year for nothing, when they could just adjust my medication slightly. He would not listen to me when I told him that my T3 was at the bottom of the range and that I needed T3 to help with my chronic fatigue, constipation etc. He just said that it was within range and that he was not comfortable changing my medication but that he would refer me to the Endocrinologist that I asked for - on the NHS. I am happy about that part but this means I could suffer for months before I see him.

The guy even told me that he had met other patients in my predicament. I asked him why he would not listen then if he knew there was truth in what I was saying. I am so exhausted, I want the drug now, not 5 months down the line. I left him with a file full of papers on T3 and asked that he learned something from meeting me by actually reading the stuff and to then educate his staff so they would change their practice. I doubt he will.

I am so frustrated and upset. I have taken tomorrow off work as I don't want to have another melt down like last Friday.


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## Swimmer (Sep 12, 2013)

Awe Viv, I'm sorry  Let's hope that he may just take what you gave him and read it -- then maybe he'll look into it further and learn -- but I'm so glad you get the endo you want -- be sure and ask to be put on their "waiting list" after you set the appointment so that if any cancellations occur, that you'll be called. After you get the referral, you can also contact the nurse and tell her how awful you're feeling and ask if there's any earlier opportunity to see the doc -- it just might work.

I hope you have a very special day today, rest, enjoy your favorite treat fruit, and have a nice hot bath.

Take care!


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## Viv22 (Sep 3, 2013)

Hi Swimmer, thanks for your support.

I just had a call from a specialist I saw last July (who I wrote a 3 page letter to last night). He has said that he is happy to be "open minded" about T3 and is going to recommend to my GP (next week as he is too busy today) to prescribe 20 mg Liothyronine - the UK version of Cytomel. He is not very open about Armour though (even though he has heard of it) and told me that I am "clearly a woman looking for answers" and warned me off trying to get answers online and trying to get unlicensed medication. He doesn't seem to think that this is my answer to everything though but cannot say what would be. I told him I am willing to take my chances. I told him that I do not believe I am feeling this rough nearly a year later for no reason.

Regardless, I am going to see a Psychiatrist next week for CFS - they put you through CBT for CFS here. I am also seeing a Dietician for my diet. So I am doing everything in my power to get well. I hope that good health is on the horizon.


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## Andros (Aug 26, 2009)

Okay; glad you are getting the Rx. However, I feel obliged to warn you that 20 mcg. (I hope it's mcg. NOT mg.) is way to large of a starting dose. It would serve you well to start out on 5 mcg.. You can cut the pills in to quarters if you decide to heed my advice.

Many hugs,


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## Viv22 (Sep 3, 2013)

Andros, he told me he was going to leave me on 75 mg Levothyroxine and give me 20 mg T3 to be taken in 2 increments. Please explain your reasoning so I know. Thanks. I appreciate your input.


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## Swimmer (Sep 12, 2013)

A psychiatrist? I don't understand why?


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## Viv22 (Sep 3, 2013)

In the UK they do not believe that there is a cure for CFS so they try and help you manage it by changing your thoughts, behaviours with cognitive behavioural therapy.


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## Swimmer (Sep 12, 2013)

we are talking chronic fatigue syndrome? In someone who has tested positive for eppstein barr virus? I have seen someone with active EBV basically rise from the ashes from rest, time, probiotics, and caprylic acid.

Now I know about monolaurin, and after another crashing thrashing round of antibiotics that sent the EBV person in another downward spiral, once again rest and nourishment were helping... But then one month on monolaurin and probiotics (in this case soil based organisms probiotics) was part of that one month of healing and then they were back to "good to go!"

probiotics & monolaurin are safe and natural things -- worth reading about.


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## Viv22 (Sep 3, 2013)

Swimmer, you are an encyclopaedia of information - thank you!

I have looked up Monolaurin and this seems to hit the nail on the head. I actually had the Rubella virus and I have never had my energy levels back to normal since. This sounds like it could really help me. Why do GPs not recommend these things?! I have also had Pneumonia 3 times in my life etc etc.

The Dietician has already recommended getting a probiotic into my diet so I will arrange this at the same time.

I am hoping to pick up my prescription for T3 today too. I have taken a few days off work and have been resting and feel a lot calmer. I also cancelled my gym membership to stop me wanting to go which is very sad but I need to get well. I can join again in the future. Walking will be my new sport.

I hope that with all these adjustments that this is my turning point.

Thanks again.


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## Airmid (Apr 24, 2013)

They have been finding that CFS is often proceeded by a virus. It could be German measles, or a severe flu. Something that stresses out the immune system that for some reason people with CFS don't get over the same way others would.

As frustrating as it is, canceling the gym membership and going to walking is probably a good idea to keep from pushing yourself. You do live in a very big city and it might be a thought to find a swimming pool that caters to disabled people also. We have one here - it's actually salt water with UV light for cleaner (and very clean), walk in with ramps, kept nice and warm and caters to all peoples with all levels of disabilities with classes and free swim. Finding something soothing like this were you can do as little or as much as your able to without impact might help. I'd ask my doctor if there was anything like that.

You do definitely want to keep from overdoing it with CFS as that only makes patients sicker it seems. Gradient Exercise Programs were tried and found to actually make patients worse instead of better. Not to say you shouldn't be up and moving but to keep it slow and steady.

I hope the T3 works for you and at least helps with some of what is going on.


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## Viv22 (Sep 3, 2013)

I believe my CFS has been caused from German Measles/Rubella.

Today I feel like I'm losing the plot. On Thursday I wrote to 2 Endocrinologists - one that I saw recently (slow to respond and very uncaring) and one I saw last July and asked both of them for T3. Both responded. I am uncomfortable with the tone from both of them.

The one from July sent a letter to my GP and basically said that as my condition hadn't changed much in a year, he thought it was a reasonable request to try T3, then in the same breathe he says he doesn't think it's going to make a blind bit of difference and that he has warned me that it may create a placebo effect.

I have not yet got my prescription from the GP - I have been told it will take 48 hours from yesterday - the guy isn't even in the office today.

In the meantime, the second specialist responded and was very blunt and basically said that he had no experience with T3 medication and that as far as he was aware there is no clinical proof that it works and he was not willing to prescribe it. On the same note, he says that he can find nothing clinically wrong with me, apart from being slightly hyper.

I think he hates me because I have made my feelings known about his lack of response and his general uncaring manner. Yes, so I am feeling somewhat like the crazy person who is imagining things.

Yesterday I saw the Opthalmic specialist and he did the schirmer's test under anaesthetic and it was positive. He has diagnosed Blepharitis and Dry Eyes. I must just wait for the lip biopsy results for confirmation or not of Sjorgens.

I saw the psychiatrist today who was to give me an initial assessment for CFS. I was quite wary about this Nevertheless, I told him my entire life story and the events of the last year with my health. I'm all for a bit of counselling - it never harmed anyone... I told him that I have never been sick in my life before (not like this) and that I am one of the "can do" people of the world. I even showed him the (awful) letters from the specialists in relation to T3. He said to me "so what". He said that he knows all about T3 but in the sense that it is used for depression - does anyone know this? He told me that he thinks I am someone who is trying to cope with chronic illness and that we should wait for the Sjorgens results before we decide how to proceed. I got the impression that he does not think I'm crazy. He said he will be writing a letter to my GP and Rheumatologist with his initial thoughts.

I am due to return to work tomorrow. Whilst I am quite rested after being at home since Friday, I am disappointed at the fact I do not have the medication - I am very impatient - and now I fear that my GP is going to have something to say about giving it to me because of what the second specialist has said.

The psychiatrist said to me that I need to realise that these things take time to resolve.


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## Swimmer (Sep 12, 2013)

Dear Viv, I wish you could come over to the USA while we still have good healthcare.

I do hear some good things from the psychiatrist though - so from an outside point of view based on what you're saying --

I think when he said "so what" -- I think he's saying -- "don't let that bother you" perhaps maybe meaning - seeing by his actions - that he will help you get some of your needs addressed by doctors.

I think that in telling you that you are someone dealing with chronic illness and wait for the sjorens results -- I think he's looking for a way to help you to wait for those results before beginning the path to your help & healing, and it sounds like his action in telling you that he is going to write a letter, seems to on one hand - be a usual thing; i.e., reporting back to the docs on your condition, however, it also seems like he might actually aid you in getting some action.

While you are waiting - hang in there -- it does sound like he's on your side. Be sure and get lots of rest, eat very healthfully if you can (whole, natural, nutrition). When you start to worry tell yourself that it's part of your illness and then just don't worry - because what will be will be, and it sounds to me like help is on the way, around the corner.

Viv, are you good at researching? I want to encourage you to really do some digging and research while you're kicking your feet up and resting, and search search search through forums and sentences for docs in the UK who have the skill that you want and need, so that in the case that you end up in the hands of another MD, it perhaps might be someone who was very helpful to someone else in a condition such as your own.

What are the words that you would be searching? What would be the conditions and phrases that you would say that would be helpful to your case? Perhaps if you write them here, I or someone might also be able to do some searching on your behalf. Do I remember that you are in the UK? Do you have a University Hospital there/nearby where people such as yourself can go?

Take care


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## Viv22 (Sep 3, 2013)

Swimmer, thanks for your response and support. I feel like my "research" skills are getting me into trouble with the UK medical profession. They do not believe in T3 medication and they certainly do not believe in Armour, nor are they open to its use. They say there is no clinical research that proves that it helps with thyroid conditions, despite the fact I have shown them all my research from the internet. They will not acknowledge the fact that I will not feel well unless my T3 levels are in the upper percentage of the range (and not scraping at the bottom), and they cannot explain why my levels are lower than what they were a year ago, when they should in fact be higher with Levoythroxine supposedly converting properly. I am a crazed woman!!!


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## CA-Lynn (Apr 29, 2010)

May I ask - what kind of references [sources] did you show them?


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## Viv22 (Sep 3, 2013)

I wish there was a copy and past function but there isn't but I found information from Googling and using predominantly US sites. Stopthethyroidmadness, hormonerestoration.com; etc. Do you have any better ideas? There are no clinical facts in the UK to say that T3 is the way - only people on forums saying that it helps.


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## Viv22 (Sep 3, 2013)

Also Mary Shomon's article on T3


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## Swimmer (Sep 12, 2013)

Viv - does this help? (there's more than what I posted below - but I'm EXCITED FOR YOU!!!) CHECK IT OUT!!  WOO HOO!!

http://www.thyroid-info.com/topdrs/unitedkingdom.htm

Birmingham/London/Sway/Scotland

Dr. Gordon RB Skinner, M.D., 22 Alcester Rd, Moseley, Birmingham, B13 8BE phone/fax 01214498895. http://www.thyroideducation.com

((VIV)) It looks like Dr. Skinner has passed away -- please perhaps contact this board or see my note below for more research suggestions.


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## Swimmer (Sep 12, 2013)

This looks like an old UK FORUM (I think it's not in use but you might find helpful doc info there) http://forums.about.com/ab-thyroiduk

Here's a boat load of "potential" help -- I'm not sure -- I just googled on your behalf...

https://healthunlocked.com/thyroiduk
http://www.patient.co.uk/forums/discuss/browse/hypothyroidism-1050
http://www.btf-thyroid.org/
http://tpauk.com/home.html
http://tpauk.com/forum/
http://www.thyroid-disease.org.uk/smf/

VIV -- It looks like Dr. Skinner has passed away -- but with some research, you should hopefully be able to discover WHO patients are happy with now -- here's a page about his passing, I am guessing that by contacting this website you will be able to discover some referrals to decent docs in UK. http://tpauk.com/forum/showthread.php?1439-Article-DR-GORDON-SKINNER&p=8518#post8518


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## Viv22 (Sep 3, 2013)

Thank you


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## Swimmer (Sep 12, 2013)

Viv, Here's a pharmacy that prescribes armour in the UK. I think I'd go see them in person if they're nearby and work it backward... I.e., ask for doctors or ND's who are prescribing it -- or see if the people at these various pharmacies can give you referrals/recommendations -- perhaps call them  but if you can go in person I think you might tend to get more help.

http://www.thyroiduk.org.uk/tuk/treatment/where_to_get_desiccated.html

oh oh ohohwait wait wait -- lookee here -- they have a list for you!! There's a place for you to contact them so you can get the list of docs! ! YAY!!! PTL!!!

http://www.thyroiduk.org.uk/tuk/diagnosis/private_doctors.html


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## bigfoot (May 13, 2011)

Read through your posts here, and many things sound very, very familiar to me. I got sick with an "unknown flu-like virus" years ago and have never fully recovered. From there my immune system seemed to go haywire, and other medical issues cropped up, while still others got worse. Up until that point I was full of energy, traveled all over, etc. You know the story, LOL. I read through the list of CFS signs & symptoms and I could check a lot of boxes. Ultimately, I fully believe it is almost all connected to getting that virus initially.

Years later, after being dismissed by quite a few doctors, but finding some good ones along the way, I've picked up on some knowledge and ideas. Much of it from the great folks here. Some of this you probably already have heard about or checked into -- but I'll throw it out there anyway. Forgive me for rambling, it's early morning and haven't had my coffee yet...

* Gluten sensitivity or Celiac disease (not one in the same). Can test via saliva for this. This can be a huge trigger for the immune system and inflammation if it affects you. Gluten is in darn near *everything*.

* Food sensitivity and allergy testing. Plays into next couple of suggestions.

* Avoid soy and cruciferous veggies (broccoli, cabbage, cauliflower, etc.). If you are going to eat these, cook them first to make them safer.

* Beware if you are sensitive to dairy.

* Gastroenterologist consult, liver function tests, blood sugar test (A1C).

* Look into "Leaky gut".

* Adrenals (do the 24-hr urine or saliva collection, broken into different time periods).

* Check TPO Antibodies and Thyroglobulin Antibodies, but also Thyroid Stimulating Immunoglobulin (also called TRAb I believe). Dr's will mistake this for "TSH", they are not the same.

* Look into testing Catecholamines (epinephrin, norepinephrine, dopamine, etc.)

* A buildup of Reverse T3 can block your body's absorption of Free T3.

* Vitamin and mineral deficiencies (especially B-12, D3).

* Check pituitary function.

* Check sex hormones - testosterone, estrogen (or estradiol for males), SHBG, etc.

* Thyroid panel should always be TSH, Free T3, and Free T4 at a minimum.

* Test for EBV/Mono (I think you already nailed this one), Lyme disease.

* Armour, Nature-Throid, and West-Throid for thyroid medications instead of synthetics. Raise by 1/8 to 1/4 grain at a time, and slowly.

* Doc opposed to desiccated meds? Try synthetic T4 and T3 combo, such as adding small amount Cytomel to start.

* Watch out for medications (example: Synthroid) that likely contain gluten.

* Neurologist consult, neuropsychological testing if warranted.

* Thyroid ultrasound yearly to get a baseline and follow-up monitoring.

A book I found very interesting, and that was recommended by one of my docs, is called "Primal Body, Primal Mind". Lots of connections between what we eat and how our body works. We've started eating far more "Paleo" in our household as well (more of a lifestyle change than a diet). Same goes for Nom Nom Paleo -- they've got a really cool blog, and are the real deal in person. At any rate, no connection to these folks, just found the info useful. I see Mary Shomon's works have already been mentioned, too. Also, Stop the Thyroid Madness (aka "STTM"). Just remember to take everything you read with a grain of salt. We've all got our opinions. 

Most importantly -- keep on doing what you're doing! It's easy to get frustrated and worn down; especially when you don't feel well. I've found that taking some time to do something fun and distract myself usually helps. More than likely (heck, this goes for lot of things) if you are getting pushback and poor attitudes from docs, it's because you're hitting on something and they know it. Many have big egos and don't want to be questioned; while the good docs will always welcome questions and have an open mind. The healthcare system is great for handing emergencies or urgent needs, but when it comes to chronic conditions it seems like they are running about 10-15 years behind the latest research and cutting-edge treatments.

Ok, now where's the coffee? :anim_32:


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## Airmid (Apr 24, 2013)

Viv - When they diagnosed you with Blepharitis did they mention a reason you had it or go over lid hygiene? I've had Rosacea-associated Blepharitis since my early teens that funnily enough usually only affects my left eye. It took years to get a diagnoses, around the age of 19 and a pharmacist who cared enough to tell me that if I continued on the eye medication I had a good chance of going blind. I found a doctor on my insurance plan that did rare eye diseases who diagnosed my correctly and after the correct course of oral medication and lid hygiene I didn't have a flare up for 15 years. I wish someone had mentioned Depo Provera flared up skin disease, would have been nice to know.

Anyways, yours is probably a different cause then mine but lid hygiene is really important. If they didn't go over this with you feel free to look it up or send me a note. You'll feel a lot better faster usually keeping your lids clean. It feels weird at first and may feel like a bit of burden but it's worth it when dealing with Blepharitis. Hopefully yours is a short course and you'll be through it quickly.

At least you're getting your T3. Some doctors welcome patient suggestions or complex questions, some feel threatened by it. My doctor in the military was the first. When we were trying to figure out how to treat my nerve pain at the time (this was over a decade ago and not a lot of good options at the time) I researched and found out what they did for diabetics with neuropathic pain. Out of curiosity I showed him what I found and said that while I don't have diabetes we both suffer from nerve pain and perhaps we should try this round of medications. He said sure, we did it and it worked. Other doctors I've had over the yeas would have bullied me or laughed at me and not listened and left me in pain. It's hard to find doctors who listen and it's hard as patients not to feel like we have to get confrontational to be heard.


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## Viv22 (Sep 3, 2013)

I took the rest of the week off work - I just needed some time out to recover. Fighting a war against the medical profession, on top of being unwell, had taken its toll on me emotionally and physically. I am happy that my own GP (who had been on holiday) listened to me and was open to giving me the T3.

I started taking the T3 yesterday and will monitor progress. I have also been taking coconut oil twice a day. Apparently this converts into Monolaurin in the body (thanks Swimmer) - it kills viruses and bacteria that may be stuck in the system, so if the Rubella is still around, hopefully in time it will die off and I will regain my energy and good health. People really rave about coconut oil - it makes me think why GPs don't recommend it.

I am feeling less foggy and more relaxed as I have practically slept for 2 days solid. My eyes are dry and sore and I am really hoping that this has nothing to do with Sjorgens because it sounds like a nasty disease. Does anyone with Hashimoto's suffer from dry eyes?

Airmid, I never had dry eyes until a year ago. They suspect I have Sjorgens but it has taken all this time to get the tests done on the NHS. I will definitely know for sure within the next 2 weeks. They also say it is hereditary. My biological father always looked like he had sore eyes but I always thought this was because he was tired from working late nights. I was not brought up with him and our relationship is non-existent.

I went to the pharmacy today to pick up the rest of my medication and there was a book called "Thyroid Disease". So I opened it to a random page and read a sentence which said something to the effect of - "abnormal TSH and T4 are the only things that can indicate thyroid disease". Hmmm.... What about antibodies?

Bigfoot, thank you for all the tips. I appreciate your recommendations. I will go through your list answering relevant bits.

I asked my GP to test me for food allergies once and he said that I need to tell him what exactly I want to be tested for because the scope is too wide.

I had Coeliacs tested by the specialist which was apparently negative. Results 1 [0-20 U/ml]

I am slightly sensitive to dairy. I know this because I like to drink Nesquick in milk sometimes and my stomach is quite sensitive to it but it doesn't stop me drinking it. I was raised in boarding school and was brought up with the attitude "you eat what is put in front of you". So food allergies have never been noticed prior to the last year. My stomach should be like nails having been raised on boarding school food.

Liver function test results:

Serum total bilirubin level 15 U/mol 1-17 U/mol]

Serum total protein 75 g/L [66-87 g/L]

Serum albumin 49 g/L [35-52 g/L]

Serum globulin 26 g/L [18-36 g/L]

Serum alkaline phosphatase 58 u/L [35-104 u/L]

Serum ALT level 18 u/L [10-35]

Serum gamma GT level 16 u/L [5 -36 u/L]

Serum progesterone 29.3 nmo/L [>=20<30. If truly mid luteal phase, borderline value - suggest repeat on day 21 of 29 day cycle]77

Serum Oestradiol level 357 pmo/L -46 - 1828 pmo/L]

Serum cholesterol 5.2 mmol/L [3-5 mmol/L]

Serum triglycerides 0.5 mmol/L [0.4 - 1.70 mmol/L]

Serum HDL cholesterol level 1.8 mmo/L [>1.20 mmol/L]

Serum LDL Cholesterol level 3.2 mmol/L [0-3 mmol/L]

Let me post these and I will continue to answer - I'm paranoid about losing the information.


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## Viv22 (Sep 3, 2013)

TSH Receptor Antibodies 0.34 iu/l [0-1.5]

Anti-TPO 890 [0-150 u/ml]

Anti-Thyroglobulin 206 [0-150 u/ml]

I have requested an ultra scan but it falls on deaf ears. I have also asked if the above results mean I have Hashitoxicosis - no response.


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## Viv22 (Sep 3, 2013)

I had a short synacthen test a couple of weeks ago to check my adrenals and the results were right in the middle. I was very surprised at that.

I also did the catecholamines test at the end of January.

Norepinephrine 195 nmol/24 hr [0-573]

Epinephrine <11 nmol/24 hour [0-147]

Dopamine 1560 nmol/24 hr [0-3270]

Day 2:

216 [0-573]

<11 [0-147]

Dopamine 1790 nmol

Same ranges as above

Day 3:

236 [0-573]

<11 [0-147]

Dopamine 2180 [0-3270]


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## Viv22 (Sep 3, 2013)

Vitamin B12 117! [25-108] - I was taking shed loads of vitamin B at the time so I do not know if this affected the result.

Vitamin D 64 nmo/L [50 - 120] Insufficiency 51-80 - my results say "normal no action"

Free T3 4.2 [3.1-6.8]

My T3 levels are always scraping at the bottom - consistent for last year. Hopefully T3 medication will rectify this

I'm not sure if my pituitary has been tested - what would the tests be called?

Is a Neurologist basically a psychiatrist?

In the UK, they do not believe in Armour or anything else that has combination T3/t4. I had to fight to the death to get T3.

I hope all the above helps. Thanks.


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## CA-Lynn (Apr 29, 2010)

A neurologist is not a psychiatrist. Two totally different medical fields.

you could try Googling the terms "pituitary tests"


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## Viv22 (Sep 3, 2013)

Ok I think this may be some pituitary test information

Serum prolactin 147 mu/L [126-640]

ACTH level 16 ng/L [<46 (9am) <10 (midnight) - Test done at about 15.30 in afternoon

Serum FSH 14.3 u/L - no range

I see a Neurologist deals with diseases affecting the nervous system. I am not sure on what grounds I could be referred to see one. I mean, they won't even let me have a proper ultra scan because of my high antibodies. Nobody takes it seriously.


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## Airmid (Apr 24, 2013)

On the subject of Blepharitis:

1) It can be acute or chronic. You could have it for a couple of weeks and be done and have it for the rest of your life.

2) It causes, itchy eyes, dry eyes, irritation, pain, blurred vision among other things during attacks. All this can be helped by good eyelid hygiene along with any medication your doctor may prescribe to help things along.

3) You can have this and other conditions. The two are not mutually exclusive. The eye doctor diagnosed you for a reason and if you have questions about how this diagnosis may stand up with other autoimmune disease I encourage you to call their office.

4) It can occur at any age.


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## bigfoot (May 13, 2011)

Hmm, well, your TPO Ab's and Thyroglobulin Ab's are obviously high. Between the two of those, it strongly points to Hashi's (as you already know I'm sure). The fool-proof way to verify this would be to do a FNA biopsy. If memory serves, the docs generally won't be interested in that unless your nodules are 1cm or larger, or if you have a huge honkin' goiter that is causing pain and/or difficulty swallowing. Nodules themselves can cause problems with thyroid hormones, too. So without that ultrasound as a baseline, you are kind of stuck. If you are having any "discomfort" or "swelling" (*ahem*) that may help sway a doc to pursue an ultrasound.

I'm glad many of the other labs are looking good, except that it can be very frustrating not having more clues as to what is going on. They certainly have run quite a few tests, and that's impressive. Do take some happiness in the fact that many of the results are good! 

I think things like "Hashitoxicosis" and "Hashimoto's Encephalopathy" (another thing you may wish to research; basically, its treated with Prednisone and thyroid meds, and generally diagnosed by neurologists) are so poorly understood and under-diagnosed, that most docs have no idea about them. I've mentioned those very terms to some of my best doctors, and will get blank stares. And as far as endocrinologists go, they seem very focused on diabetes nowadays. Thyroid problems aren't catchy or sexy, they don't make waves in the news, and they probably don't get written into many grant proposals for research. There have been some celebrities with thyroid problems, and I keep hoping one of them will push for better treatment or diagnosis. Ironically, thyroid medications are very widely prescribed and must generate a small fortune for the drug manufacturers. I can see why they would not want to rock the boat and jeopardize their profit margin by researching better or cheaper treatments.

If you're wondering, the neuropsychology testing basically consists of speaking with a neuropsychologist (after getting a referral from a neurologist) and explaining your difficulties, then they give you a huge battery of tests to examine your mental skills and sharpness, and write up the results. It's part depressing, part inspiring, and part very interesting. Overall, not my favorite way to spend 1/2 a day, but the information gleaned can be very, very helpful for both yourself and the docs. Also it gives you a good baseline should you ever need something to compare it to in the future. It was honestly kind of liberating to know I wasn't just imagining all the trouble I've been having with memory, cognition, etc. It can kind of validate what you are going through.

Other things you might want to investigate would be sleep apnea if you tend to snore or awake unrested, as well as low dose naltrexone treatment for various autoimmune conditions. But first and foremost on my list would be getting that pesky thyroid ultrasound. There is only so much a doc can determine by palpation. Your thyroid could look great, or it could look like swiss cheese. It's relatively cheap, non-invasive, painless, and quick. Why they resist sending people to get one is beyond me.

Oh, and I'm glad you have started some T3 -- just be sure to go low 'n' slow with that. The stuff is like jet fuel, and can be four times as potent as levothyroxine. Thankfully, its half-life is so quick that if you do overshoot your target, you won't have to wait for months for things to settle down, like when taking too much T4. You might also want to split up your dose and spread it around throughout the day, as it can give some folks a bit of a crash after 3-4 hours.

hugs3


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## bigfoot (May 13, 2011)

One other quick mention -- as an example, I had strange blotchy rashes on my arms years ago. This was before being diagnosed with any sort of thyroid problem. No doctor had a clue about what it was, and we even asked our vet since we have a dog. Once I started T4 meds, the rashes "magically" disappeared. So modern medicine definitely doesn't always have all the answers. It can be a little of trial and error, too. Our bodies are so complicated, and our understanding so small.

Taking it even further, despite being on T4, I still had weird muscle stiffness, neuropathy, joint pain, tingling in my legs and arms, etc. Once I began taking T4 & T3 many of those weird signs & symptoms minimized or vanished altogether. So while your dry eyes may be the result of another medical condition, I wouldn't rule out it being related to the thyroid/autoimmune problems you are dealing with.

And being negative for Celiac disease is great -- but you can still have a scorching case of gluten sensitivity. (There is a saliva test you can do for that.) Ultimately, if you can't get tested for the sensitivity, it might be wise to try cutting out gluten for about a month or so. See how your body responds (it took me 3-4 weeks to notice a change). Gluten can linger in your body for quite a while, and it takes time to get rid of it, even if you aren't eating any right this second.


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## Viv22 (Sep 3, 2013)

I have to say thank you to everyone who has tried to help me. I really do appreciate all your comments and advice. It certainly has given me avenues to explore.

My current status is that I am feeling better than what I have been but still very fragile. This is not a word that is typically used to describe me. I made it in to work today but I am ready to go home and collapse. I hope that things will change soon.

I am avoiding gluten as much as I can, although it is in practically everything. I am focused on a super healthy diet of salads and whole fruits/veg and meat/fish. No processed food at all. Limited dairy. I am taking a probiotic daily now, along with T4 (Levothyroxine 75 mcg) and T3 medication (Liothyronine 5 mcg twice a day), 2 tablespoons of coconut oil - it is getting easier to stomach, Vitamin B Complex, Vitamin C and HTP5 at night - something has to give soon!!!

I am almost certain my dry eyes are a result of my autoimmune problems - I certainly never had a problem with my eyes before the last year. I am waiting for results on Sjorgens. I will keep you informed.

I am compiling another list of things to do from all the helpful tips given by everyone. It just gets so exhausting and I find I need to take time out.

Thanks again everyone.


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## Swimmer (Sep 12, 2013)

Hi Viv  here's an easy gluten free meal if you like these things...

ground chicken (or turkey) fried & seasoned. On the side, saute' onions cut into small-ish - bitesize pieces season with lots of garlic and a little salt (onions make their own juices so no oil is needed.) Add mushrooms (if you like those) and yellow pepper (if you like that.) While you're doing this, boil water, add broccoli flourets and lightly cook.

You should have sauteed' lots of those onions/yellow pepp/mushroom, add a little water to use the juices on the bottom of the pan. Mix together everything in a casserole dish. If you're consuming dairy, add a small amount of grated cheese on the top. Cover and bake at about 350 for about 15 minutes. Yummy, satisfying, gluten-free. (If you're dairy free, omit the cheese.)


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## Viv22 (Sep 3, 2013)

Update: Sjorgens has been ruled out (thankfully).

I saw a new Endo yesterday - he confirmed that I am one of the unlucky Hashimoto's patients who also has Graves Disease and that this is why my eyes are so dry etc. I did not have enough time with him and am due to see him again next week.

He also believes that I have post viral CFS due to Rubella - I am due to start treatment in a week or so. I am still taking coconut oil religiously on a daily basis, along with a probiotic.

In the meantime, my employer sent me to an Occupational Health Therapist and after hearing my whole sorry story from the last year said to me that things have gone too far! He has instructed my employer that I am only allowed to work 4 hours a day (for a month to start). He thinks I am on the right track in terms of treatment otherwise.

In addition to the Levothyroxine, I have been on 5 mcg Liothyronine for 2 weeks and today upped the dose to 10 mcg. Let's see how this goes. I have 3 positives to report. The brain fog has lifted somewhat, the muscle ache is slightly relieved and (now this is a surprise), my hormones seem more balanced. That alone is a miracle. Anyway, it is nearly time for my cycle, so let's see if I become a crazed lunatic within the next week or so... that is the real test!

I will keep you posted.


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## Viv22 (Sep 3, 2013)

I requested some blood tests were done to check the fatigue status

*Serum vitamin D 62.0 nmol/L 50.00 - 120.00nmol/L*

*Vitamin D interpretation.*

*Deficiency < 50 nmol/L*

*Insufficiency 51 to 80 nmol/L*

*Therapeutic target > 80 nmol/L*

*Above result includes 25 OH Vitamin D3 and D2.*

*Serum ferritin 36.7 ug/L 13.00 - 150.00ug/L*

*B12/folate level *

*Serum vitamin B12 617 ng/L 174.00 - 1132.00ng/L*

*Serum folate 14.6 ug/L 4.20 - 18.70ug/L*

*Full blood count - FBC *

*Total white cell count 10.7 10*9/L 3.90 - 11.1010*9/L*

*Haemoglobin estimation 126 g/L 118.00 - 148.00g/L*

*Please Note:Hb and MCHC are now reported in g/L*

*Haematocrit 37.0 % 36.00 - 46.00%*

*Mean corpuscular volume (MCV) 88.3 fL 82.00 - 98.00fL*

*Mean corpusc. haemoglobin(MCH) 30.1 pg 27.30 - 32.60pg*

*Platelet count 344 10*9/L 140.00 - 400.0010*9/L*

*Neutrophil count 6.9 10*9/L 1.70 - 7.5010*9/L*

*Lymphocyte count 2.7 1 Q*9/L 1.00 - 3.20 0*9/L*

*Monocyte count 0.8 10*9/L 0.00 - 0.8010*9/L*

*Eosinophil count 0.2 10*9/L 0.00 - 0.5010*9/L*

*Basophil count 0.0 10*9/L 0.00 - 0.1010*9/L*

*ESR 21mm/h 1.00 - 12mm/h*


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## visc (Feb 22, 2014)

Viv22 said:


> Andros, he told me he was going to leave me on 75 mg Levothyroxine and give me 20 mg T3 to be taken in 2 increments. Please explain your reasoning so I know. Thanks. I appreciate your input.


Your mistaken, it is 75 mcg and 20 mcg. The reason for this is complex, but I can try to explain.

Your body converts T4 to T3 by using an enzyme to chop of one of the iodine atoms. This T3 is the active form of the hormone and binds to cell receptors with the help of steroids from the adrenal glands; hence why people speak of adrenal fatigue in the context of thyroid issues. When you lack this enzyme do to many reasons, your body will have a hard time converting T4 to T3. The additional T3 your doctor has prescribed will help supplement the T3 your body fails to convert.

Also note that you don't need to have the FT3 test. The total T3 test provides enough information. The usefulness is actually debated by endocrinologists. As long as your FT3 or T3 is in range it is a good indicator that your body has the T3 it needs. The problem is when your body has other metabolism issues. So more T4 or T3 won't complete the picture. It's very complex and sadly without spending lots of money ($$$) you won't get comprehensive panels frequently enough to resolve your issue making diagnosis very difficult.


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## Viv22 (Sep 3, 2013)

Visc, yes I agree - it's mcg's not mg's...

Okay so let's say I'm converting T3 adequately, what other issues could be affecting my metabolism problems? Thanks for your input.

Tomorrow is 3 weeks on T3 - my head is clear and I feel slightly better all round but this could also have to do with the fact I am working reduced hours and sleeping a hell of a lot... Apparently it takes 3 weeks for T3 to really start working - let's hope that I am about to take off like a rocket ship... Looking forward to getting well soon!!!


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## Viv22 (Sep 3, 2013)

I saw the Endocrinologist yesterday. He tells me that I am unfortunate in that I have the Graves Disease gene as well as Hashimoto's Thyroiditis, on top of the Post-Viral Chronic Fatigue. The latter is not in his expertise but I start treatment with another Specialist next Wednesday.

In relation to the Graves Disease problems, he has told me to wait for the thyroid to "burn out. I asked him when this would happen and he said he cannot be sure but possibly 18 months. I'm at the year mark now (ish).

I have very high TPO (thyroid peroxidase) antibodies and apparently this is what destroy the thyroid cells....the more cells it destroys the less thyroid function you have...eventually causing hypothyroidism on its own (as opposed to hyperthyroidism and hypothyroidism which I am currently experiencing - not fun at all, I'm on a rollercoaster and there is nothing I can do about it).

For a more in depth explanation: All of the preformed thyroid hormones (T4 and T3) spill into the blood stream making a person extremely hyperthyroid. In the meantime, the thyroid has been damaged and is no longer producing new T3/T4. Therefore, when the body is done using the preformed T4/T3, the thyroid is burned out because it's been damaged and isn't producing T4/T3. A person then becomes Hypothyroid to the extreme.

A person goes from hyperthyroid (rapid heartbeat, anxiety, energetic, sweaty, shaky, going to the bathroom frequently/loose stools, hungry/weight loss) to hypothyroid (slow heartbeat, apathetic, lethargic, cold, lifeless, dry skin, constipated, not hungry/weight gain/bloated) very quickly. Literally overnight.

I simply cannot wait! The thing that worries me is that some people say they are waiting some 15 years later and their thyroid has not burnt out and they wish they had it taken out. I sincerely hope I am not one of these people.

Anyway, today I am having an ultra scan at 2.30. I have 3 antibodies, which can also be a marker for cancer so I want to be sure that there is nothing to be worrying about. Once this is done and I am given the all clear, I hope that this will be the last of my thyroid problems.

I will commence my treatment for CFS next week and hopefully in time, I will be back to the way I was. It seems like another life away&#8230;

If anyone has first hand experience of the above, please let me know what I can expect. Thanks.

I will keep you posted.


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## Swimmer (Sep 12, 2013)

Hi Viv, you've got a lot going on.

So how long have you been suffering with the post viral chronic fatigue, how did they discover that? (Do you mean EBV?)

I don't understand why the thyroid medication doesn't cause the TPOab to be pushed down. I.e., I thought (perhaps wrongly so) that taking thyroid hormone pushed down TSH & TPOab.

I don't understand about waiting for it to cease function, due to graves, forgive me == you don't have to explain, I thought graves was discovered by a test, and I thought that helping to control it was helpful.

Do I misunderstand these thyroid ideas?

Take care


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## Viv22 (Sep 3, 2013)

I got the Rubella Virus in December 2012 so since then really - because the whole thyroid kicked off at the same time, it has been a very confusing time. Then, the Graves aspect on top of the Hashimoto's has only made things even more confusing - what a rollercoaster! Found all problems through blood tests.

I haven't had my TPO tested in a while but today I had an ultra scan and she said that there was some inflammation and she would be recommending that my antibodies should be tested. She also told me that having 3 antibodies is NOT a predictor of cancer - she said it is utter rubbish! She told me I have several small nodules, one is 5 mm long but she claims it is benign. She says that they are the most common nodules. She thinks I am pretty healthy. I told her that for the last year every specialist that I see tells me that I look healthy and that there is nothing more frustrating, because I feel like rubbish. Such is life!

I will see the Endocrinologist for the last time next week. I want to be armed with any unanswered questions. He seems to think that I will be well once the CFS is treated. He has completely played down any thyroid/auto immune involvement in the way that I feel - he says it is part of life for now and that it will eventually burn itself out and everything is going to be fine.

Another interesting thing the Endo told me is that I am lucky that I am not a smoker, because my eyes would protrude if I was - I was quite surprised about this bit of information. He has also told me to stop going on forums...

My focus now is on healing my gut. I believe that this is the root cause of my diseases (and genes). I am taking probiotics, coconut oil, vitamin D, vitamin C, zinc, vitamin B complex, Lacrilube, Hypromellose, 75 mcg Levothyroxine and 20 mcg Liothyronine (twice a day) - my brain has not felt sharper in a long time since starting the T3. Only worry is that my cycle is late... not normal. I have bought a thermometer and will start taking my temperature to check if I am hypo.

The Endo has not suggested any medication for the Graves - just to grin and bear it until it burns out - I am very nervous about this. I said to him what happens when I have another auto immune attack and he said that this is basically to be expected but it will not be forever - roughly an 18 month period... hmmm... I wish I could be confident. I am a bit confused myself about the Graves element but will have to take one day at a time. If I'm honest, I doubt I am ever going to find a better Endo in London than the Professor I have seen.

I am getting a lot of rest and my eyes are lest reactive. I am also less inflamed internally. Better all round. I hope I am going to get well properly now without any lingering fatigue and symptoms.


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## Airmid (Apr 24, 2013)

Viv

I've had Hashimoto's since at least the age of 25. I'm 34 now and still have hyper-hypo swings and my thyroid still hasn't died.

Waiting around for that could take years. It's a bad plan. Yes some people have thyroids that die withing a couple of years. Others of us are still waiting around for the magical moment a decade or more later.

Just because a doctor is billed as good doesn't make it so. Smoking does not make one's eye's protrude - it's the antibodies that attack different parts of the body that affect the eyes, regardless of whether you have full blown Graves or not. I'm sure many of our Graves patients here can give you more information on that problem but it has zip to do with smoking.

Do you have both antibodies for Hashimoto's and Graves? It's not all that uncommon to have both. Waiting around for your thyroid to keel over is bad advice, plain and simple. It's strange that she's so confident that your thyroid will just die off in her time period. I've never met a doctor who told me that. I've met good and bad Endo's over the years and never had one give me some arbitrary time frame as to when my thyroid will give me the courtesy of dying. Yes some people have thyroids that do just burn out in a couple of years but many others find themselves fighting for years with a thyroid that refuses to finally give up.

On top of this, because of what the role the thyroid plays in so many areas in the body, in my opinion it would be a mistake to ignore it when treating CFS. Ignoring something that causes such fatigue and exhaustion on top of your other problems is just treating the out layers of a deep wound while ignoring the deeper issues that may or may not be healing.

Just because someone is billed as good doesn't always mean that they know best and it doesn't hurt to keep looking.


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## Viv22 (Sep 3, 2013)

Airmid, how do you control the hyper, hypo swings? Do you have other medication?

Do you know what sets these episodes off? Have you ever landed up in A&E thinking you're going to have a heart attack? What medication are you on?

I have antibodies for both Hashimoto's and Graves. I also have nodules and inflammation on my thyroid.

Quite honestly, I think the specialist believes that if he tells me something positive, I may believe him and I may get better - the power of positive thinking and all that. What I want to know from his is at what point would he consider taking my thyroid out if I continue to swing for longer than 2 years. Also, would it actually make any difference having the thyroid taken out? Some people say no, because once you have Graves, you will always have it.

What do you think good advice is in these circumstances, since you have had years of problems? I know everyone is different but it is good to hear other perspectives.

I have seen 3 Endocrinologists in London. It is hard to find one that actually specialises in Hashimoto's - they all seem to deal with Diabetes or other things. I would say 2 of them, who are known to each other as they studied at the same place, have a lot of experience with thyroid problems. They have both played down the fact my thyroid/auto immune diseases are the reason why I feel so bad. The latest Endo is convinced that I have post viral chronic fatigue as does a Rheumatologist and Psychiatrist... they don't believe there is a cure for CFS in England, they send you for CBT or Graded Therapy to sort out CFS - I will start treatment next week. I am open to anything, I just want my energy and quality of life back. They also play down the T3 effect - they believe it creates a "placebo" effect... I have felt some marked improvement taking T3 but I do not believe I am cured. I have only been taking it for 3 weeks though. That's another thing, I told this guy that my reverse T3 and T3 are very low, how do I raise these levels/will the T3 raise these levels. He claims that as my tests are in range, I will be fine (now this is after asking him before I saw him, if he was one of these "range" doctors, because if he was, I didn't want to see him...).

It is tiring dealing with all this stuff. I don't think there are any Endo's in London that will not think in the vein as above. It is what it is!


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## Airmid (Apr 24, 2013)

I haven't found a good way to control the swings other then to back off the thyroid meds and wait when I go hyper.

I'm tachycardiac and am on a beta blocker - this occurs no matter if I'm hypo or hyper that day. I have had to go the ER because my heart was going around 170 for hours just in normal rhythm. We can't up my beta blocker that much though on a daily basis as my blood pressure is low and it will drop it very low. So my normal pulse on beta blockers is 100-110.

You will have antibodies for both if you take out your thyroid. They should go down over time and many here with both that had a TT say it was a good decision. I can tell you from my personal experience of a partial thyroidectomy due to cancer it's not worth keeping this malfunctioning gland. We can't control it and now with my on coumadin it may cause some issues with balancing that. So I'm fighting to see an experienced endocrine surgeon who can deal with the mess of my thyroid and look for my malfunctioning parathyroid gland.

I don't have a lot of time right now - I'll come back and add some more later. Sorry it took me so long to respond, lots going on. Hope you are doing okay.


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## bigfoot (May 13, 2011)

Viv22 said:


> I have antibodies for both Hashimoto's and Graves. I also have nodules and inflammation on my thyroid.


Nuts; well, this definitely complicates things. When you look at it on its face, your thyroid is constantly being pulled in two different directions, depending on whatever mood it's in. Now throw in the nodules and the inflammation, and it's no wonder you aren't feeling well.

IMHO, the treatment problem becomes how do you know whether it's the Graves or the Hashi's taking precedent on any given day? If you are given beta blockers for the hyper phase one week, you might wind up hypo next week. And if you are given thyroid meds that week, you might go hyper the following week. Personally, if it was me in that situation, I'd press for a TT and just go permanently hypo for good. At least that can be effectively dealt with and you avoid some of the roller-coaster. (Full disclosure: I have not had any thyroid surgery, so that's just my $0.02 opinion.)

There is a "block and replace" method for dealing with combined Hashi's/Graves, but my limited understanding is that can be difficult and requires a lot of hands-on time with a skilled doctor.


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## Viv22 (Sep 3, 2013)

Thank you for your responses - I appreciate the input. Airmid's response doesn't instil me with confidence as I certainly don't want to be swinging for the rest of time. I spoke to the Endo about how far he was willing to let this go on for and he seems to think that we are on a "wait and see" approach here. He say's that these cases are very unusual. There has been no mention of block and replace or any other medications. I have been told that my thyroid will burn out! If (when) I have another episode, I must go and see the Endo again. I feel the guy has not taken me seriously at all - all he can say to me is "you will get well" with nothing to back it up. In the UK they are all trained in the same way and will stick with their own. Surely I can't see another Endo - that would make number 4. The Rheumatologist made a remark in her letter saying I was seeing Endo number 3 - you know, like I'm the one with the issue here and it's all in my mind.... it's upsetting.

I am getting to the point where I am going to start self-medicating. Next time I feel the palpitations, I am going to reduce the thyroxine slightly. I have been researching loads and this is what other people in my position do and then when they swing the other way, they increase it again.

My personal records indicate that I am hyper for 3 months then hypo for 3 months and so forth... I have no idea what triggers it off. I am entering the calm phase at the moment but I think this is because I am now taking the wonderful T3 so perhaps this will assist in that regard. My eyes are not hurting and I am only using eye drops once a day in the morning. I am definitely not hyper anymore... I still have fatigue though and I am thinking that I am never going to be that energetic, lively, sporty person that I used to be ever again. It's very sad. I hope I am wrong.

On Saturday morning, I took a slightly higher dose of T3 in the morning and I felt like a rocket ship. I had so much energy. I mowed the lawn, cleared the garage, cleaned the house, shopping - you name it! I have not felt that great in ages. My mind is so much sharper. I wonder if I should increase the T3 and reduce the T4? I cannot seem to find any info in this regard so if anyone has an opinion that would help. I have low FT3 and low RT3 so I may be one of those people that suits more T3 medication. I am considering taking T3 whenever I feel a total lack of energy, so if this means that I have to take it 3 times a day, then so be it but I will only do this when I feel my body really needs it.

On Sunday, I decided it was time to start exercising again so I went on a long walk, combined with very slow jogging - mostly walking. I came home and relaxed, had a sleep in the afternoon. On Monday, I felt great in the morning but at 12 noon, I nose dived and had to leave work early and went home and slept. I really want this fatigue thing to go away - it doesn't suit me!

My overall symptoms have improved somewhat but I still have this fatigue thing going on (despite the fact I am on half days at work at the moment for another few weeks and get to sleep extra every afternoon). It's a gift that I can actually remember things now - that alone is a blessing. I am pursuing the coconut oil every day and that has certainly taken the joint pains away. I will persevere for at least 60 days.

I have learned that we are all different and different things help different people and no one size fits all. We are our own best doctors. I am grateful for the information I get from people on this forum - every doctor say's I should stay away from forums - I tell them that I would if I felt well but that this help is my only solace in the dark times and if they could make me feel well, I would not have a need to seek the help of strangers.


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## bigfoot (May 13, 2011)

Glad you are ignoring the naysayers and humoring the egotistical, dismissive doctors! I could get up on my soapbox, but I'll try to keep it zipped for now. 

The fact that you were able to handle a little more T3 and the resulting energy boost is physical evidence & proof that clearly your fatigue is tied in (at least partly) to your thyroid issues. In a way, it can be reassuring to know the "why" instead of just second-guessing yourself. I don't know if you are keeping a daily log or spreadsheet, but it's a good idea. Especially when you want to remember what you did (dose up, down, etc.) six months or a year ago to feel well. Bad enough we all have poor memories with this stuff! (In fact, I've probably mentioned some of these things already, LOL.)

As far as T3 vs T4 goes, a good rule of thumb is that T3 is *four times* as potent as T4. So taking 5mcg of T3 is roughly equivalent to 20mcg of T4. Of course, as you know, one acts over shorter time and the other longer. So if someone felt good, for example, at 100mcg of T4, then switching to 80mcg of T4 + 5mcg of T3 would be a similar dose. Caveat: adjusting medication on my own wouldn't be my first choice, but people have to do what they have to do to survive and function.

Oh, and I wouldn't be necessarily sharing that you are cruising forums on the 'net for info. h34r: If you must, I'd call it a "support group" and leave out the fact it happens to be online, or say you read about whatever it may be in a medical article or journal.

It's always kinda funny when you get excited over mowing the lawn or cleaning the house. I'll take what I can get!


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## Viv22 (Sep 3, 2013)

Yesterday I received the report from the Endocrinologist. Perhaps I am too emotionally involved here and way too sensitive but the content really upset me. All I can hear is that I have a condition and nothing is going to make it better so I must learn to live with it. I refuse to accept this. He surprisingly makes no mention of the fact that he told me that my thyroid was going to burn out within the next 6 months or how to deal with things going forward. I just feel angry and upset.


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## Swimmer (Sep 12, 2013)

Viv, can you find some natural doctor in your region who helps with the thyroid so you can get some help? If you can do some online research and just make that appointment with someone who is already helping people in situation similar to yours - then you can hopefully get to feelng better while you are awaiting the thyroid burnout.

So sorry.


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