To cut a (very) long story short I've been ill since the age of around 11, I'm now nearly 26 and still spend a large amount of time in bed, if I manage out of it I need a wheelchair everywhere. I was diagnosed with M.E. when I was 13 but more recently been diagnosed as having Ehlers-Danlos type 3 and POTS (postural orthostatic tachycardia syndrome). I'm also B12 deficient which I get one monthly injections for from my GP. I have also recently been diagnosed as having a severe bladder wall infection which has been going on since I was little (and ignored by the nhs until I went private).
I have numerous symptoms but the worst for me are severe exhaustion and weakness, joint and muscle pain, palpitations, shortness of breath, stomach symptoms (constipation & nausea, bloating, discomfort), severe dizziness, dry skin, bladder pain. I have also gained weight although at the start of my illness I was underweight and tube fed due to my severe nausea.
I've never been diagnosed on the nhs as having a thyroid problem but ever since I became ill my T4 levels have always been low. The lowest the T4 has been is 6 (range is like 10-21). TSH has always been fairly ok and is sitting around 1.35 now. T3 is high normal at 5.8. I have trialled thyroxine in the past but it made my palps worse and I felt no real benefit (100mcg). I had been on 1 grain of armour which I was buying myself from abroad but even that didn't make a huge difference (I am now completely off it as I wanted to get my levels re-tested - I had been on 1 grain for a good 3-4 years).
Basically I want to understand why my T4 is so low but the tsh is normal and the T3 is actually not that bad ? I'm under an endocrinologist who wants to re-do my T4 whilst off my meds and he said he could possibly 'supplement' it but I'm guessing that will be with thyroxine and a very small amount at that, which doesn't do anything for me.
My Mum is also unwell and has been for a number of years with similar symptoms but also depression mixed in. Her tsh and t4 levels are very similar to mine and yet the GP prescribes her 100mcg thyroxine - of which makes no difference to her symptoms either. Yet they won't treat me...
Any advice/help would be great. The endo I saw requested T4 to be tested but it's been refused twice by the labs because my tsh is normal. V frustrating that I'll have to pay yet again.
Hello xbexyx. I have to start by saying I am not a doctor. I say that because I think it is almost certain that you have pituitary and adrenal problems. Adrenals are the big, ignored by the NHS, link that cause most people to be ill who are (mis)diagnosed with ME. In my opinion ME does not exist (nearly 40 years experience).
Ask your doctor to test your iron, folate, ferritin, Vit D and Vit B12 levels. It's common for us to be deficient in one or more. Also ask for your kidney function to be tested - experience tells me this is also often poor for us. I found alpha lipoic acid helpful.
It's a long road to recovery but you can and will improve with proper supplementation and treatment. The key is to start identifying the problems and work on them one at a time.
If you PM me, I can give you details of a couple of private doctors who can help.
Thank you for the reply rosetrees I really appreciate it
I am on 15mg of hydrocortisone for life now after apparently having low adrenal function via a saliva test, although I am now on it for life as I got up to 25mg and then couldn't get off it - that is my reason for being under an endo now on the NHS, it was a private Dr who suggested the hydrocortisone and in fairness it is the only thing that gave me *some* improvement but it felt like fake energy and I was pushing beyond my body's limits.
I have Vit D insufficiency which I'm being treated for, I also have osteoporosis. My Vit B12 was 78 but is maintained with monthly injections (which I know isn't always enough). I also am on ferrous fumarate due to my ferritin being 13 but my folate is fine.
I don't really know where to go from here as I have tried so much trying to get better. I'm on high dose antibotics for my severe bladder infection so it's hard to judge whether I feel worse from the die off from that or what.
I still don't understand why my tsh would be normal and t3 high normal despite my t4 being low and what the real reason is for this ?
I'm not a doctor either and have no way near as much experience or opinions as many of the people here, but I would say logically there is something broken in your feedback loop. If tsh is not responding to low t4 by working harder to ask thyroid to make more, then it's obvious that that chain of communication is not working. This is what I Wd be pushing the endo to explain, perhaps someone on here knows of a condition that fits that relationship? Is this what your bloods say wen you r on nothing or when u r on amour. If the latter it cd be distorted by the armour esp as ur t3 highish.
I have m.e, I know the nightmare of nebulous hopelessness, but I was 43 when diagnosed, so can only imagine how hellish it must be to be so young! I am about to read a book recommended by someone here that may cover ur experience. I will let u no if I find anything helpful or potentially relevant, or u cd ask ivy77, she's helped me. Although this books position is at variance to some of the other positions on the forum, but as you know from your attempts to recover, you have to consider all of the evidence.
Hi xbexyx so sorry you're so unwell. I too have M.E and so does my son, he was diagnosed at 14 and is now 24. I agree with rosetrees about the diagnosis of M.E . Lots of help and useful information on this site.
I also agree that ME and CFS do not exist and maybe the acronym NCWW would be better ( No Clue Whats Wrong Treatment anti depressants) I think that auto immune conditions should be treated as a group as well as supplements for eg thyroid. There seems to be little research on what causes auto immunity in the first place but not enough linking when one condition is " solved" and the patient is stil ill.
I think u have to be careful of how u phrase things like 'M.E does not exist' because unfortunately for people living in a glass cage it does and while I'm sure u didn't mean this, the way uv said it makes it sound like people like me have a psychosomatic disorder - which is simply insulting and untrue!
I also live with someone who had m.e for sixteen years and is now recovered, she doesn't have a thyroid problem, or an adrenal problem, but she has been recovered ten years now. She lost sixteen yrs of her life to m.e and even if it is a name given by des who know nothing about it, it is at least some way of naming a group of symptoms that many people's lives Are ruined by.
I apologise for offending you. I do believe that people are genuinely ill with ME but think doctors should do more to find out what the illness is and how to treat it. I was diagnosed with CFS (not nearly as bad asME I know) at one stage and know how frustrated I was by being given a label and virtually no help.
Completely agree with you that it Wd be great if the medical profession would apply a bit of science and listen to their patients and do more to make connections. I realise you didn't mean it the way it came out, we all type things without thinking too much and we're often not feeling too bright either are we, knackered, so thank you for apologising.
Did you hear in health on radio 4 this week? Very interesting bit of research being done on why people being treated for HIV and aids don't get MS, or if they were diagnosed don't get further symptoms once being treated. All to do I with Epstein Barr virus and the potential trigger for MS. Well if anyone cared about M.E they'd be thinking about the role glandular fever often plays in triggering M.E. But will they.....? nah, why bother it's all in our minds. So Frustrating!
Glad your chronic fatigue didn't go all the way to M.E.
Have you had an MRI of your pituitary? My thyroid levels are similar although My free T4 is not as low as yours it has been low or just inside the range. My TSH has been low/normal. My T3 has been normal. This can be an indication of secondary hypothyroidism , possibly pituitary issue. My MRI on my pituitary came back fine, however my Endo thinks that although the MRI was clear, that my pituitary isn't producing enough TSH which results in my thyroid not producing enough T4.
I've been on 50mcg of Levothyroxine since Jan from the GP, Endo has now increased it to 75mcg. To hopefully bring my free t4 level up. He thinks I'm converting what free t4 I have into t3 just I've not got enough t4.
He suggested a lot of my symptoms are what you would call M.E Chronic fatigue type symptoms.
Incidentally a naturopath I saw said to me he sees a lot of patients with chronic fatigue/M.E with a low free t4.
It's frustrating I got told my thyroid levels are fine by a couple of Dr's but what a lot of GP's don't know but really should is if there is a pituitary issue then the TSH reading is unreliable.
I hope they get to the bottom of it and you're feeling better soon.
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Becca
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