I've been struggling with my energy for years and over the last year it's become much more debilitating - having to rest once or twice a day and feeling lethargic and muzzy headed most of the time.
Doctors have done numerous blood tests and keep telling me there's no discernable problem, although my thyroid peroxidase antibodies are extremely high. Doctors tell me that many people have high antibodies but don't suffer in any way. So they can't do any more.
I can't plan or commit to anything so having a pretty miserable time and becoming very depressed.
I have a healthy balanced diet - very little sugar and processed food.
Any ideas would be most welcome.
Written by
ArtyLee
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So we can offer better advice, can you tell us more about your thyroid condition, eg any other ongoing symptoms (other than lethargy), and share any blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Have you ever had key thyroid vitamin tests (ferritin, folate, vitamins D and B12)? I would 100% look to test these and share results with us.
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Many with Hashimotos find a gluten free diet beneficial. Have you ever had a coeliac test? I’m not coeliac but (like many with auto immune thyroid conditions) am certainly gluten intolerant. Eliminating gluten fully for 2-3 months as a trial may be of benefit to you.
with high thyroid antibodies your GP should test for coeliac BEFORE you trial gluten free
ALWAYS test thyroid levels early morning, ideally before 9am
So sorry to hear about your energy levels and fatigue I struggle with this and it can be awful.
How is your blood pressure? Any blood pressure drops or heart rate increases on standing? POTs was intially suspected (although still tachicardic quite often) It took the table tilt to diagnose me with orthostatic intolerance and it brought on my symptoms during the test. It affects me even if i am just sitting still for long periods of time.
I have the TPO antibodies also. But also have just been diagnosed with mild hypoparathyroidism. How are you calcium levels, vitamin d, magnesium, B12, cortisol levels?
I'm so sorry to hear of your struggles. I've been in this rabbit hole for 15 years and it can be so hard to get answers and treatment. Here's what I can tell you about my very recent improvement after at least 6 years of fluctuating TSH (despite consistent compliance) and a rapid deterioration in physical health form a not that great position to start with.
I was suffering from debilitating symptoms or tiredness and breathlessness, (I have to lie down after standing at the sink to wash up for 10 minutes) like yours and my doc couldn't find any answer after a raft of blood tests.
He did comment that as my Vit D had been tested a year ago at 35, he couldn't prescribe Vitamin D but to take some that you can get a Lidl/Aldi. I did but it didn't make a difference because I kept forgetting to take them every day, so I took 7 in one go to cover the whole week. In fact this made me feel slightly better so I checked the dose which was very low, and tried 7 per day for a few days, and continued to feel a tiny bit better.
So, I reasoned that perhaps the low dose was not enough for me, and taking 7 at once means I'm taking 7x the fillers, which could interfere with absorption. I found some higher dose Vit D tablets which are 4000iu (100mcg) per day, which is the maximum recommended dose and about £8 for a year supply (cheaper than lidl which are £2 and don't last long because you need more to get a reasonable dose). The brand is Nutrition Geeks, on amazon.
Within a day or two I began to feel so much better. I now take them at night with a magnesium and get a full night's sleep and actually wake feeling refreshed. My feet reduced their burning, my constant aches from doing any small activity (like washing up) are vastly reduced, and I feel more robust and positive, though I'm still very breathless doing anything which requires even small exertion. I also had a B12 injection which you can now get at the chemist in the UK (£29) which has helped a lot. I do believe that not enough attention is paid to the effect that being suboptimal in these two vitamins can have when you have hypothyroid issues.
Also, keep eating gluten (2 slices a day for 6 weeks my doc said) and THEN get a coeliac test, to settle your mind once and for all. If the test comes back negative, ruling out coeliac, you can then cut out gluten for 2-3 months to see if an intolerance is what's causing your symptoms. If you have any issues with your bowel or gut, you'll struggle to absorb vitamins and might need more, or benefit from an injection).
It's about getting improvement in increments from any potential source. Since we will no longer be prescribed T3 on the NHS (it is so difficult as to be going that way), I also looked into how to improve my conversion from T4 to T3. Things that interfere with conversion are seed oils (abundant in processed food) and trans fats, so eating an unprocessed diet is helpful, (Mediterranean is delicious and healthy). Something that helps with conversion, according to studies, is taking 1gram Vit c with your thyroxine in the morning. The recommendation is powdered Vit C, the cheap stuff (ascorbic acid) is fine:
If all else fails, do ask your doc to consider excluding all issues that might cause your tiredness and if they are all excluded, to diagnose you with CFS. Do not let them simply say there's nothing they can do. They can follow the pathway set out by NICE here:
If they have excluded your thyroid due to your being euthyroid in your bloods, then they can not then claim your symptoms are due hypothyroidism, and must rule it out as the cause of your tiredness. They cannot have their cake and eat it.
I say this not because you want a diagnosis of CFS, but because your doctor can not simply tell you you are 'just tired all the time' when you clearly cannot function and are debilitated, rather than tired. Your doc must find the reason for this, by systematically looking at all the conditions which could cause it, and if there are none, then dx with CFS, for which you can get some help and accommodation. This is what I'm currently doing with my doc.
Since we will no longer be prescribed T3 on the NHS (it is so difficult as to be going that way)
Liothyronine is prescribed by the NHS sea- elf, although Levothyroxine continues to be the first course of treatment for hypothyroidism (as it works well for most people). As you say, it is difficult to get Liothyronine prescribed, but many endocrinologists support combination treatment if blood results repeatedly show poor conversion.
Unless your NHS trust blacklists like mine. My endocrinologist has recommended a trail but because he's in a neighbouring trust but close to me is unable to prescribe so I'm not writing emails to those in power🤦 & trying to source in UK if I can😳 just because it's a postcode lottery
East Lancashire NHS trust but I used to live near West Yorkshire NHS trust no problem with liaison with North Yorkshire NHS trust inc Harrogate hospital, I believe South Yorkshire NHS trust also blacklists info from my endocrinologist I'm sure there are others. As I said still constructing my email to the powers that be🤞
Many thanks for the info Humphre. I wish Thyroid UK would produce a map with all the areas like yours where T3 is limited or blacklisted. It’d be a good starting point for those people trying to fight for a fair deal for T3 patients and useful info for TUK members.
Humphre , this may interest you , re east lancs (local) decision to not allow.
They are part of LSCMMG ( lancashire and south cumbria medicines management commitee)
This post contains some minutes from the meetings where this was decided. At the time i though it meant East lancs had been outvoted, but they seem to have been allowed to veto it for their own area despite the area as a whole deciding to allow T3 trials for new patients) ...... anyway , just thought you might find something useful in it if you planning a letter to someone.
This is so useful to me too - thank you. Even the burning feet, for which i take a frozen hot water bottle to bed each night! I have ordered the Vit D. I also am hypothyroid, very mild (non-smokers'!) COPD, and knee arthritis, which doesn't help. Everything is such an effort and I sleep poorly. Walking far is impossible. So I am keeping my tabs on this thread. I do wonder about CFS but it seems to be far more extreme fatigue than I have. And our GP has asked us not to bother the surgery unless absolutely essential as they are understaffed and overloaded.
There happened to be a feature about Long Covid on BBC Breakfast this morning (7.20am ish) I rambled off to see what they suggest for supplements and came across this website... fatiguetoflourish.com/best-...
I certainly rate CoQ10 and the others listed that many of us already take
I used to take D Ribose before going to the gym. I dont have CFS but have Fibro. Fatigue isnt generally an issue for me but I was doing quite a lot of heavy duty exercise and the D Ribose was helpful for getting through workouts.
I've had to temporarily quit, I might need surgery on my foot to correct my flat feet and I also have a rotator cuff problem in right shoulder which is giving me jip. I'm hoping to get back to it in the not too distant future.
Oh, that's a drag my sister is having her bunions straightened and it's a long haul, she currently has one good foot and one crooked! I had great success with the osteopath sorting out my rotator cuff issue, having face planted the forest floor out jogging, turns out it was my first rib that needed adjusting and hey presto
I'm waiting for a steroid injection. I had frozen shoulder a few years back on my left one. Its something I'm clearly prone to. Having EDS means my joints and tendons move too much lol.
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