I cannot cope with this exhaustion any more!!

[Flamesparrow]

I feel like I spend my life going back to the doctor saying "I'm tired". They must think I am a crazy hypochondriac.

It isn't depression sleeping. I know that. I am medicated for that. It isn't "hide from the world" it is "omg my body cannot keep moving any longer".

I'm on levothyroxine and my levels are seemingly correct.

I am on iron pills.

I have a good diet, moderate exercise (when my body lets me), I drink plenty of water.

Yet once again I am sat in tears because I have things I want and need to do, but I have slept for most of yesterday and today because I couldn't physically stay awake any longer.

I go to the doctor and it is always "stress" or "depression". I'm 34, but a weekend away destroys me for most of the following week. A normal day with three kids and ill partner breaks me.

The thought of the rest of my life like this terrifies me. I am already sat here worrying about having the energy to take the Dude to cubs later.

I don't really know what I expect you to say, but it needed to all be out of my head.

[Clarella]

This may also be helpful.

But please get the article and the book and show your GP.

[Clarella]

The thing is - it is highly stressful to function without enough of the hormone t3 and the prohormone t4.

It really is.

A slight lack affects working memory, executive function (ability to multitask) and general memory. I think this is why we become depressed, however I become extremely anxious first as I'm aware how much I cannot meet others expectations (and my own) job wise, social wise and life wise. It also weakens muscles considerable, more so if we push on through, and can cause mild muscle myopathy. I have experienced this several times when I've been under, but I'm very skinny and have weak connective tissue anyway due to hypermobility.

So of course you're stressed!!!

A diabetic would not be allowed to have semi satisfactory results.

Many do not realise (including my hypothyroid mum) that without the medication, you would eventually die.

Yes for those who have half a thyroid, a tsh of a little higher might be ok - MIGHT - as their thyroid produces 20% of the necessary t3. But a tsh showing over 1 is the body needing to stimulate the (possibly non existent) gland to try to get more t4 and t3.

Ours is unlikely to be working or does not by the time you're reaching 100-125 thyroxine.

I concur with getting the pulse mag article to show the GP. It's by the same endo I have mentioned below - Dr Antony Toft.

I'd recommend getting your Dh to read it as well as the BMA book I've recommended. Too many people think that you're 'cured' on thyroxine.

It clearly states in the BMA book by toft that "the ideal replacement tablet would be one that contains 100 mg t4 and 10 mg t3, the latter being in a slow release form."

Personally, when I am on a good stable amount of t4 I am very well, and more so if I exercise and make sure my muscles are strong. For me this means my tsh is between 1 and 0.3, as also stated by Dr Toft.

[Flamesparrow]

I've posted on there now :)

I don't understand why it's so hard to believe people know their own bodies!!

[LittleCandle]

I hope you can get this sorted. My levels were dropped to 100mcg 3 years ago and I finally was able to persuade the GP to put them back up to 125mcg about a month ago. I am beginning to feel the brain fog lifting, but am still really tired - the more so after driving 1000+ miles last week to visit my new baby granddaughter. When I first went to the GP complaining about my symptoms - fatigue, aching joints, hair loss, weight gain, dry skin, loss of eyebrows/eyelashes - I was told it was my age. GP was lucky not to get a smack in the mouth! My test results were 'normal' I was told, but she didn't know how to print them to let me see them. The GP i saw a month ago agreed that she's never had thyroid problems and so really couldn't say I was wrong, so 'humoured' me and increased the dose. I suspect I might need a bit more yet, even if just for a few weeks, and perhaps a referral to an endocrinologist as i have never seen one. I will go back in a couple of weeks (if I can get an appointment, that is) and see if they will increase it a little bit again, just for a few weeks and see how I get on.

[Pleasemrstweedie]

Get yourself onto health unlocked, honestly. Ask for a copy of 'the Pulse article'. This is an article written by one of the top endos in the country, which appeared in the GPs house magazine, and which says how we should be dosed and that it is fine to have a suppressed TSH and FT4 at the top of the range, or even just over. Some people need that to be well.

It is disgusting that they are treating this as psychological when it is blatantly obvious that you are simply under-dosed.

Your GP is keeping you ill. Welcome to the club.

[Flamesparrow]

They said no to higher dose, that it is psychological. Getting a copy of my results and working out next plan for second opinion/referral.

It doesn't help where DP is now getting on the stress bandwagon. I'm not disputing I'm stressed. I'm stressed because I can't live my life this exhausted!

[RandomMess]

My Vit D results were only a little on the low results but I'm surprised at the difference in my energy since I've been taking the tablets. I'm not a bundle of energy but at least I don't want an afternoon nap every day anymore!!!

Sounds like your levels aren't high/optimal enough for YOU, ask for a 2nd opinion/referral to a specialist if they won't play ball and let you try a higher dose.

[Pleasemrstweedie]

No FT3, so we can't see what your conversion rate is like, and no ranges.

However, TSH when on Levo should be around 1 and FT4 should be in top 25% of the reference range. On that basis you are, as I though under medicated.

I'm not a doctor, but I was on my knees with results like that.

If I were you, I'd ask what the reference ranges are and, assuming your FT4 is in the bottom half of the range, I'd ask for another 25mcg, and retest in the statutory six weeks. Promise to go back immediately if you have any symptoms of over replacement.

If there's nothing doing, get some back up. Join the ThyroidUK forum at //www.healthunlocked.com and the lovely people there will help,you find evidence.

These results will not be flagged as abnormal because they will have come back within the reference ranges. That does not however mean that they are optimal.

Good luck.

[Flamesparrow]

Sorry, I waited for results to come back. Seemingly the Dr will call me tomorrow. Drum roll for results....
TSH: 3.3 (!!!!!)
T4: 12

It's still not flagged as abnormal on the system though!

[ICantThinkOfAUsernameH]

Have you had b12 tested?

[Yddraigoldragon]

Also if you can, add Vit D to your round of blood tests? And post the result here? Your comment about achey hips really resonated with me, mine were awful, I have been heavily supplementing Vit D and they are now much better. Vit D also boosts serotonin, lack of it can cause tiredness, so it seems worth making sure your levels are good?

[Clarella]

With that tsh, in me, doing as chop suggests would be what would work.

If you decide to do that Ideally try for 3 months then go to GP.

If they are obstinate, ask for consultant referral who will actually say if you feel ok on a slightly over medicated level, that is ok! (The one I saw said this)

And yes too much isn't nice at all so you will know. I was around 2.5 / t4 16 on 125, and the little extra of a 25 every other day was enough to get to 0.3.

[Pleasemrstweedie]

The practical approach. I like it.

It's actually very safe to do that. The symptoms of over-medication are so unpleasant that you'll know if you take too much.

[ChopOrNot]

Not something I would normally recommend - but have you tried upping your Levo yourself - just for a few weeks?

I did this - was on 75 a day (v sensitive to it) so started to just take 75 one days and 100 the next. Within a couple of weeks I felt "normal again. When I went back to the Dr and told her this she couldn't really argue.

I suggested the same to my mum. She had been on 50 a day for decades. Her tests were always "fine". She had never questioned it. When staying with her one week and seeing her drop off to sleep every evening about 9pm (like I used to) I said try upping your dose. She did the same - upped to 75 every other day and then went to Drs - she is like a new woman. And lots of ancillary symptoms (for her and me, heavy periods, joint pain etc) also cleared up. And thyroid blood results still "fine" but symptoms treated.

[StrictlyMumDancing]

Have you ever had your B12 checked out? I have pernicious anaemia as well as hashimotos and find that they both can produce that hit by a truck sort of exhaustion. B12 and thyroid issues are quite often linked too, but B12 is very rarely checked as standard - even when complaining of fatigue like you are.

[Clarella]

Hi flame, I'm really quite ill if my tsh is 2.5. It has to be between 1-0.3 for me and tbh most people.

A mums netter recommended this book and I'm recommending it to you as it could me extremely helpful; it's called understanding thyroid disorders by Dr a toft and it's by the BMA - key point as you can show it to your GP. It states - in a big red box - symptoms not numbers must be treated. It also explains why lower tsh is often better to feel well. Therefore if you meet with "it's ok, your thyroid is fine" - no, push to try a little higher. For me this translates to 125 4 days a week and 150 for 3 days. It also notes that even then, sometimes some patients need t3. I saw an endocrinologist (who ruled out Addison's but I had lost a lot of weight and muscle - but I just do- ) who said it's totally fine to be surpressed if you feel ok.

Give I time though, it can still take 4-6 months to actually feel a lot better once tsh is around 1, and everything else needs to be right too.


Regarding iron, just as you mention it being high - total long shot and highly unlikely, but my aunt was poorly for years and years always being fobbed off by gps, then finally recently a sharp young GP joined the dots and they found she has heamachromatosis. Afaik it tends to appear in women post menopause. I was having very anaemic symptoms despite ferritin of 50 (not totally normal but they didn't act on it till I was really showing symptoms of rls which is linked) though now it's something to keep in mind in the future as my dad is a carrier (unlikely that I'll get it but not impossible). Symptoms can be insidious in onset and lots of fatigue.

But that tsh is too high!

[Flame]

Ok I am finally back on my PC so I can give proper replies.

Looking at the CFS list there are some things that don't click, mainly there being a trigger point for it all, it has been more gradual build up that comes and goes.

Many of the things do match Addison's, apart from unintentional weight loss .

My other symptoms (excluding the exhaustion) are dizziness (which I am always again told is stress rather than imbalance), unsettled sleep, aches - mainly my hips.

The new bloods are testing TFTs, full haematinics, iron profile, FBC, renal, liver, bone, glucose... I don't recall having the full haem before so there is that. No T3 though, how wrong is it to add that...?

I agree with the CFS/ME meaning that everything would be clumped into that from there on in. Very much like with the depression, "Oh you have had a history of depression, it must be that."

Doing the mcg per kg calculations I should be on 125 which I feel makes more sense based on how I feel.

T3 is most likely my next avenue :) Why did your GP stop it? (I know cost, but presumably he didn't say "Oh it costs too much so you can suffer again now")

I'm on fluoxetine which afaik doesn't interact. If I take iron then I take it with a good six hours apart from the levo. I'm also on dextroamphetamine which again, I have googled and doesn't appear to affect it. I was told a while back that dairy can cause problems so again, I don't have dairy for a good couple of hours either side of levo.

My iron levels are naturally high, so when I have all the symptoms of anaemia, I still only show at the low end of normal. Stuff like that is why I wonder why they don't treat symptoms rather than just rely on "normal" ranges. (To be fair, I was the same with pregnancy... I knew conception date, yet because scan dates said "Your baby is this age" they told me I was a month less pregnant than I was.)

I tend to use a lot of CBT methods already, and use the spoon theory to explain why I bail on people. Thankfully people seem to "get" it.

Exercise depends on the amount of spoons and goes from walking, to running, to muay thai boxing. I find when I am able to exercise I have far more stamina than I realise.

My plan of action is to get the bloods, and then when the results are back make an appointment with DP's GP (we're at the same surgery but I tend to see someone else). He seems very good at listening and understanding, and if I take DP with me he can both help explain, and the guy will have a more full picture of everything as he knows how family life is with DP's illness etc.

Wow... that was more of an essay than I expected!! Thank you so much for not just telling me that I am crazy/imagining it/stressed.

[Pleasemrstweedie]

Get your thyroid bloods done first thing in the morning and fasting is the advice given by Thyroid UK.

TSH of 2.3 is too high for someone on treatment and my guess is that FT4 of 14 is well into the bottom half of the reference range and therefore far too low. If FT4 is low, then FT3 is low as well, which is you feel carp.

[Corabell]

Some people need their tsh to be around 1 or even surpressed to feel well on levothyroxine. For others levothyroxine doesn't restore them to full health. I was a fatigued zombie on levothyroxine even though my blood results were fine/ within the normal range.

The addition of t3 helped me regain some energy and reduced the fatigue dramatically.

You need to pursue the thyroid treatment. The doctor should be treating your symptoms not just focussing on the blood results. As previous posters have said b12,iron on vitamin d all need to be optimal too.

[Flame]

I'll be back when I have the new results!

[Flame]

Tsh was 2.3, t4 about 14 (brain dead). They said that was normal but thyroid UK says over 2 isn't...

Anyway more bloods, and the word "stress"

[Clarella]

I agree double treble check all the thyroid stuff and don't underestimate how it can easily go skew wiff if missing just one dose a week, not taking it properly (lots of medicines interact with its absorbtion) etc.

Out of interest which anti d are you on? Sertaline complicates matters with thyroxine. Other medicines are oral contraceptives, omeprazole - and iron too. Ferritin needs to be over 70 by the way. But even then it can take ages to recover your health.

I was diagnosed with hypermobility syndrome which has some symptoms of Cfs and me if I get into a down ward spiral, and a mess up with thyroid meds and a baby triggered this. My physio is similarly extremely cautious about Cfs and ME dx as its a pigeon hole never to return from. The hms is a bit like that already I notice.

HOWEVER looking at the techniques used to combat Cfs - pacing, bean theory, yoga, muscle strengthening and stretching methods, meditation ( not great at that my self!) short hitt training and cbt methods COULD all be useful to look at, without diagnosis.

Start by looking at bean theory (or spoon theory) and then pacing cbt methods for ME.

The exercise you do - what do you do? Without realising it your core and muscles could be quite weak which could be adding worsening fatigue etc. it's an extremely slow process to build up when dealing with fatigue as you have to invest some of your energy to do so.

But first stop is to double check all your levels as mentioned above.

[Pleasemrstweedie]

Good post moriarty

[MoriartyIsMyAngel]

I felt the same way on Levo. The GP always pronounced my blood test results 'perfect', but I was so tired I couldn't stand for more than a minute without needing to lie down.

T3 has been wonderful for me. It's expensive on the NHS so my GP started cutting my dose only months after allowing me to try it. I now order it online, which I'm not 100% comfortable with, but at least I'm a fully functioning human being again. Perhaps ask your GP if you could try it?

And yes, B12, D3 and magnesium are the classic three (along with iron) that hypo people tend to be deficient in. It's worth getting your levels checked.

[Pleasemrstweedie]

If you had had a thyroidectomy, your baseline dose would be worked out as 1.6mcg per kg of body weight. It might be worth doing that calculation and seeing what you come up with. The recommended starting dose these days, in enlightened circles, is 100mcg, if you’re under 50 and don’t have any signs of heart disease.

Where I live an FT4 of 17 would only be mid-range. I wonder if your GP is dosing by TSH only and is afraid of it going too low, regardless of what is happening with your thyroid hormones?