Do I have ME/Chronic Fatigue Syndrome? Could this have been caused by Hypothyroidism?

[kittenmittens]

Hello all,

I have Hashimoto's and I am on 75mcg T4 and 30mcg T3. My last blood test results (taken on 23 of November) were:

Tsh <0.01 (range 0.3 - 5), FT4 9.4 (range 9 - 21), TT3 2.1 (range 0.9 - 2.5)

(Neither Dr's or Endo will test TT3, I have ordered a private test and will update this with the results)

I have been through many combinations of T3 and T4 and found that this combination made me feel great in May this year, but now I am feeling awful.

Other tests taken on 14/09/17

Vit B12: 315 Range (200-900) (I took the Solgar Sublingual B12 for a few months but it made no difference to how I felt)

Vitamin D: 79 (>50 adequate) ( I also took a vitamin D supplement for a while but it didn't change how I felt either)

Ferritin: 110 (15-200)

Folate: 13.8 (3.1-20.0)

Have been tested for diabetes and coeliac but don't have either of them.

So, I have struggled with fatigue for many years, but I think this is the worst it's ever been. It started getting really bad around September, I pushed myself to keep working but I had to leave my job at the end of November.

The fatigue just seems to be getting worse. Sleep doesn't help much. It's just as if there is no energy in my body. Anything physical depletes my energy to an abnormal degree. So, even a 15 minute walk would use up most of my energy for the day. Carrying anything depletes my energy, standing depletes my energy. I'm really struggling to do housework. If I do the dishes I then have to rest for half an hour. If I go into town and push myself to walk and stand then I can't do anything the next day as I'm too exhausted, even the day after that is affected. I'm really getting to the point where I'm thinking I might become housebound or have to someone in to help me in the house.

My attention and concentration is terrible too, I keep forgetting stuff, like to condition my hair in the shower, or I open the wrong tin of food for what I'm making to eat, I'm getting appointment times wrong, and I forget what I'm supposed to be doing from one second to the next. Typing this I am struggling to think of the right word for things and how to spell things.

I've been off work for 2 months now and I thought there would be some improvement but if anything I'm getting worse.

It just feels like something has gone wrong in my body. I just can't produce any energy. I sometimes feel like as if I'm dying, it just feels like something is very wrong, and I'm scared and I don't know what to do.

I saw the Endocrinologist last week and he doesn't know what is wrong either.

Having done some reading on-line it seems that what I may have is ME/Chronic Fatigue Syndrome. The symptoms seem to fit, especially the Post Exertional Malaise. The fact that I felt better on this dose of replacement hormone and with similar blood results, leads me to believe it's not my thyroid causing this. I am wondering if it could have been caused by pushing myself beyond my limits at work when I have hypothyroidism. That something in me just couldn't cope and it's caused these Chronic Fatigue symptoms.

I don't know what's wrong and I don't know what to do, does anyone have any thoughts?

Should I go to my GP and ask to be referred to someone who knows about ME/Chronic Fatigue Syndrome or is there some other course of action that would be better? (next endo appointment isn't for 3 months).

I've heard that getting a diagnosis can be a bad thing as then everything is put down to ME/CFS and there are still those in the medical profession and society who think it is 'all in the head'. But the thing is whether I have ME/CFS or it is chronic fatigue caused by Hypothyroidism, at the moment I am getting no support to deal with how limited my life is becoming and how much I'm struggling to cope. I would like to be able to access CBT to help me cope with what's happening and perhaps get help with Pacing. I think possibly a diagnosis would help me get access to this.

Secondly, I wonder if it would help in life situations/benefit situations, with the thyroid the expectation is that you are given the hormone and you should then be able to function at a fairly 'normal' level, going to work, etc. If I have a diagnosis of ME/CFS the one thing people understand about that (if they have any understanding at all) is that it makes you extremely fatigued. However, there is also the risk that with that as a diagnosis people who don't understand will be more dismissive. What do you guys think?

I know there isn't a cure and seemingly no way to get to the bottom of what is causing/has caused ME/CFS, and that it's really just a symptom of something that has caused it. But I just really need to know what's going on. If it's ME/CFS maybe I can begin to accept that this is how my life is going to be and begin to find ways to cope. I'm struggling with that because this isn't much of a life really. It's horrible.

I appreciate any input but I really can't cope with doing anything complicated at the moment, like going gluten free, I don't have the energy to look into things and organise things. I can manage going to my GP/specialists, and will argue for any tests anyone can think of, but that's about all I can manage right now. I know this is really unhelpful but I just can't right now.

Thanks for reading. I'll try my best to answer any questions although if I don't manage it please don't be offended. (I'm aware I didn't reply to anyone with my last post and that was because I just collapsed and had to leave work and everything was awful. I'm sorry about that).

[SlowDragon Administrator]

Your FT4 looks very low. Can you get private testing to look at TT4 and FT3. TT3 doesn't tell you much

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, twelve hours for T3, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

If you can't afford testing, you could experiment with increasing T4 by 12.5 or 25mcg

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's connection to gluten or other food intolerances is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Some also need to try dairy free due to either lactose or casein intolerance

A negative test for coeliac does NOT mean you don't necessarily have gluten problem

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Trying a good vitamin B complex may help. With Hashimoto's we are often low in other B vitamins, not just B12. You might need sublingual B12 as well.

Vitamin D is not high enough, supplementing using vitamin D mouth spray avoids poor gut function of Hashimoto's. Perhaps try 3000iu daily. Retesting in 2-3 months. Aiming for around 100nmol

Only try one thing at a time

Dr Rangan Chatergee's new book The four pillar plan looks at the importance of good gut biome. Explains in simple steps how we can improve

[Clutter in reply to SlowDragon]

SlowDragon,

FT4 is low because Kittenmittens is taking proportionally more T3 than T4 and high levels of T4 aren't required when taking T3 direct.

[Clutter]

Kittenmittens,

No point in telling people what you don't want to hear when that may be the only way to get the help you want.

If 2.1 is a TT3 (total T3) result then I suggest you get a Free T3 (FT3) test to see what your FT3 result is because that is a better guide than total T3.

I doubt you are undermedicated because TSH 0.01 is suppressed. FT4 is low because you are taking proportionally more T3 than Levothyroxine.

I certainly would not want a diagnosis of CFS without first ruling out low FT3 causing exhaustion.

FT3 is rarely tested in primary care so if your GP can't order FT3 tests you can order a standalone FT3 home testing kit but it is better if you can stretch to TSH, FT4 and FT3 at the same time. Check out Blue Horizon and Medichecks via thyroiduk.org.uk/tuk/testin...

If you cannot cope with ordering and doing a private test why not increase your Liothyronine dose to 40mcg and see whether that improves energy?

[kittenmittens in reply to Clutter]

Thanks Clutter. I have ordered the FT3 (and FT4 and TSH) from Medichecks, I will update the post with the results.

I had my Lio dose at 37.5mcg (Levo 75mcg) but that didn't help either.

[Clutter in reply to kittenmittens]

Kittenmittens,

Perhaps 37.5mcg wasn't enough? I'm stabbing around in the dark here without a FT3 result to guide.

[kittenmittens in reply to Clutter]

Maybe, when I went to the endo he lowered my T3 back to 30mcg as this was the dose I had been well on earlier in the year. I'm happy to try this but I don't think it will make any difference. This is really my last option with the endocrinologist with regards Levo and Lio, but I've bought some Lio from Greece and after trying with the 30mcg dose I might increase the dose myself and see if it helps.

But I actually think there is something else going on now. The fact that I've been well on these doses before and now I'm not make me think it's not my hormone levels that are the problem. And the fact I have never felt this bad before makes me think something else has gone wrong. And the fact it is so related to any sort of physical activity, even standing to do the dishes, makes me think I have developed Chronic Fatigue symptoms, and I think the probable cause has been pushing myself beyond my limits while having hypothyroidism. I'm just guessing really but the Dr's don't seem to have any idea what's causing it either.

[Hidden]

kittenmittens if you've done everything possible to improve your health and you're still feeling poorly then you may have to look outside of the thyroid box.

Check out posts by janeb15 for info and links.

[Clarrisa]

It shoulds like you'll need a full fledge "Fatigue work-up" if you have not undergone this & don't get relief from the other's advice here (or are too depleted now to implement their advice). In the states Internal Medicine doctor's get turned to for this type of evaluation. If you feel worse at your house, could you spend a week say at your folks or sibling to see if there is any type of improvement?

[Clarrisa]

Addition: If you are taking ANY other medications be sure & review all the side effects if you have not done so already. Ask your pharmacist for help on this if necessary too.

[Angel_of_the_North]

You need a free T3 done, not total T3. There is probably no such disease as CFS - it tends to be a dustbin diagnosis, meaning that once a GP says you have it, any symptoms will be put down to that and nothing will be doe as it is uncurable. The symptoms are real enough but could be thyroid or adrenal related, or even something like Lyme disease, that affects the mitochondria. Can you get sex hormones tested?

[SilverAvocado]

Hi Kittenmittens, have just been searching back through your results to work out if there are any clues. A couple of things jump out at me:

Both B12 and Vit D aren't at optimal levels. Ideally you want B12 at least 500 and Vit D at least 100. It's likely the tablets you were on before weren't the most effective kind, particularly if they were prescribed. Prescriptions tend to be the cheapest and least effective.

I don't know too much about these, you will find more detailed advice from people like Seaside Susie, particularly on dosage. For the B12 you want to take... Oh no, brain has gone blank. I think it's cyanocobalamin, but it may be a different coabalamin. You need the kind you dissolve under your tongue. Take a good vitamin B complex alongside, as they must all be in balance.

For vitamin D make sure you take D3, and have Vitamin M2 with it. I take drops that include both. You need a high dose of several thousand international units per day. Mine are Thornes Research, and that is a good brand.

The other thing is the you don't have a freeT3 result. Until you see that you've got no idea whether your dose is low, close to optimal, or optimal. You want the freeT3 near the top of the range. Have you had the result come in since?

You don't mention here if you've got Hashimotos? I can't remember if you've told me before. The test that shows this is thyroid antibodies, there is thyroid peroxidase and anti thyroglobulin. There are many abbreviations for both! There are a few different bits and pieces to think about whether you have it or don't. The highest likelihood is the you do have it, and in that case you must try going gluten free, and maybe also dairy free.

[SilverAvocado in reply to SilverAvocado]

Hi Kittenmittens, I've just looked all the way back to the start of your posts to look for clues.

First thing is that omg now sure I'm wrong about the Cynocobalamin. I had a quick search and can't find the recommended one. It will be one of the cobalamins and its mentioned often by the good posters about vitamins.

I see that you've had a few vitamin issues all the way through. You must take these supplements scrupulously, and get a retest 6 months to a year later to confirm that your numbers are raising. If they aren't being increased by what you're taking, you need to know that so that you can step up your treatment and try a stronger dose or different method.

It also looks like you've never seen a freeT3 blood test result since the days when you were on Levo only! Operating like this you've got no idea whether this dose is right for you, or which direction to move in. You're saying you've still got bad symptoms, so it's likely you've got a bad freeT3, too.

I'm going to tell you off a bit, now, and I've seen in other threads you've been told off before! You told me you were sure these results were good, but actually you've got poor vitamin results, and unknown thyroid panel results.

You're talking about moving onto NDT, that you've tried T3-only, and you're thinking about trying over range freeT3, but these are all things you don't need to try until the basics are perfect.

The same with your trial of T3-only. It may be that the reason you felt unwell was because you were very undermedicated, and it has nothing to do with T3-only itself not suiting you.

The first step here is to get straight to Medichecks or Blue horizon and buy a complete thyroid panel: TSH, freeT4 and freeT3. If the budget is fine also get the ferritin, folate, B12 and D testing, too, to draw a line in the sand. Otherwise get those done in 6 months.

When you've got them, post the complete thyroid panel in a new post for advice. This will be starting from square one in your journey to adjust your dose.

At the same time, supplement the vitamins you need to raise, and see where you are in a few months time with those.

[SilverAvocado in reply to SilverAvocado]

I've also seen that you do have Hashimotos, so it's also important to try gluten free. Many people get a good reduction in symptoms with those, and a reduction in antibodies. This is independent from coeliac results.

The good news here is that there's a lot you can do to improve your health. You just need to get down to it, follow the steps one by one, and have patience.

[kittenmittens in reply to SilverAvocado]

Hi Silver Advocado,

Thanks for the replies.

I have a test kit from medichecks that will test TSH, T4, and FT3, but I am just waiting until 6 weeks after my last dose change to do it.

I took the Solagar sub-lingual B12 as advised, and Vitamin D3, but they didn't seem to be helping and I started getting nausea and so I looked at the last things I'd changed, which was taking these supplements, and stopped taking them. I may try again in the future.

[SilverAvocado in reply to kittenmittens]

Kittenmittens, improving your vitamin levels is your path to getting well. If one of the supplements caused nausea you can't tolerate, move onto plan B. Restart one of them to find out which is causing nausea. I think the B12 is most likely, as they can be harder to take.

Hopefully you'll be able to take one of the two without nausea, once that's established get on the case to research the different forms of each supplement. There are many different forms of B12 out there. The one recemmended on the forum will be the one most people get on well with, but look up which forms exist and the pros and cons of each.

Another thing that might help is to adjust what kind of meals you have them with. At one time I used to take vitamins with a small snack and get nausea. Now I take them with my most substantial meal of the day and it helps a lot.

It might be worth making your own thread to ask about nausea, as other members will have a lot of experience.

There's no point looking into other treatments until you've worked on the basic things that are obvious they need doing! It can take months or even years to raise your vitamin levels, and often the first thing you try won't work. You've got to stick with it if you want to see results