Hi. Having suffered with increasing fatigue, cognitive impairment, joint and muscle pains etc for 30+ years and being given a diagnosis of Post Viral Fatigue Syndrome 20 years ago. I recently saw an NHS endocrinologist after paying out for private blood tests on my thyroid. My bloods showed my T4 and T3 although in the normal range were only just in the lower end and my thyroglobulin was 375 so 3 times above normal. The Dr’s notes that came with the results suggested Hashimoto’s Disease.
Basically I was told that the thyroglobulin test meant nothing... there was nothing wrong with my thyroid and go away and stop wasting their time (in different words obviously). He did do quite a few other blood tests including re testing my TSH and T4, all of which are ‘normal’ (I’m going to ask for a print of the actual numbers).
Anyway, having done my homework and preempted this scenario I ordered in some Thyroid Aid to start taking immediately after the blood tests were taken. After the fifth day I started to feel big benefits and now 7 days in I’m still improving. However one symptom I had managed to get under control, insomnia, has now come back with vengeance. I’ve been awake since before 1am today. Partly I think because I’ve been too scared to push my self too hard physically because being a full time dad to our 2 year old and carer to my recently disabled wife I can’t afford to crash. So my brain which appears to have woken from a long vacation is now running almost at ¾ speed and my body isn’t keeping up and burning off that energy.
Does anyone have any advise, or experience they can bestow upon me. I’m planning on starting a mindfulness routine today. For the sake of my family I am kind of desperate as things cannot continue as they have been and although it’s only been a couple of days of feeling this alert and alive I really don’t want to loose that.
Thanks in advance.
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Muscles1256
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Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you try 3000iu for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
Also as you improve vitamin D you may need a good quality daily vitamin B complex, one with folate in not folic acid - see the Dr Gominack link above.
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Hi. Thank you for your reply and sorry for the late reply.
It’s Nutracraft ThyroAid which does unfortunately have iodine (kelp) in it. I’ve only been taking it for 7 days now. I haven’t yet managed to find a similar supplement without that has equally good reviews, though I am thinking of looking to see if I can get the other ingredients separately. Do you have any other suggestions.
Unfortunately my GP didn’t know what to do with the blood test, hence why they referred me to the endocrinologist. And since he has ignored the tests and my signs and symptoms ( he actual raised his eyebrows when he saw I had Thyroid UK information with me and when he found I was ex NHS staff and now a stay at home dad the not interested light came on, I was in there for no more than 3 minutes) I suspect I will have more chance of winning the lottery than getting a scan. I will try though.
Sorry, I forgot to say about my vit D. I was on multi vitamins with vit D in when those tests were done. I’m currently coming to the end of a vit D, 3 month 4000iu per day and then going down to 1000iu per day. That’s one of the reasons I would like a print out of my blood work so I can see how it’s doing. They also tested for calcium which will be interesting to see. Again I have noticed a marked improvement in my immune system since taking the fit D.
I’ve also been taking innopure vit B complex for 1 ½ months. However looking at it it has folic acid not folate so will have to reassess those.
Although I haven’t been taking the thyroaid very long at all there already been improvements. My skin is less dry, bowls are happier (but still not 100%), I’m less cognitively impaired, have more energy and am not feeling quite so I’ll fatigued. Even today after only an hours sleep and still have this throat infection, I’m tired but I don’t feel that real deep I’ll fatigue.
I suspect I will have to think about private, however I know locally it would be the same endocrinologist so I would have to look further afield. On top of this we may have to be taking my wife’s employer to court in the next couple of months so money is an issue, certainly in the short term.
Getting all your vitamins optimal is the first step. Then as body starts to use thyroid hormones better you either just feel better, or TSH rises enough for medics to acknowledge problem and start Levothyroxine
So you need vitamin D level retested. GP should do this.
Magnesium helps vitamin D and also can improve constipation. "Calm vitality magnesium powder" is cheap and easy to use. Starting with small dose, as it can cause diarrhoea if take too much. Magnesium can also improve skin
Good vitamin B complex is Igennus Super B (can take just one per day) or Jarrow B-right - both available online
Vitamin B12 : Too low. I would want it mid-range at the very least, but even better would be quite high in range.
Folate : Get it to the upper half of the range.
Vitamin D : Needs to be 100 - 150 nmol/L for most of us (people with dodgy thyroids) to feel at our best.
Ferritin (iron stores) : I can't read yours, although I can tell it is too low. I would suggest getting it to mid-range. There are some important exceptions to this though. Before supplementing iron you really need to know what your serum iron is. It is possible for people to have low(ish) ferritin and very high serum iron, suggesting that the body is unable to use iron effectively and can't move it from the blood into ferritin. If that is the case then supplementing iron should be avoided until the issue has been fixed. It could be caused by a few things but the commonest reason that I'm aware of is a genetic methylation problem. This may be overcome with methylated/activated B vitamins, particularly methylfolate (not folic acid), and methylcobalamin.
Your thyroid results do suggest you might be at the beginning of a decline in thyroid function. Your TSH is higher than that of a healthy person, your Total T4 (thyroxine) is quite low. Your Free T4 is quite low in range, but your conversion to T3 is still working moderately well. Your Thyroglobulin antibody result shows that you have autoimmune thyroid disease (aka Hashimoto's). But your results will all be classified as perfectly normal by the NHS. And they almost certainly won't test your Tg antibodies, they usually only test the TPO antibodies. Even a private doctor or endo wouldn't treat your thyroid as it is at the moment, so I wouldn't suggest spending money on one unless you are planning to ask them to look for other causes of your problems.
My suggestion would be for you to concentrate on improving your nutrient levels, and eating a 100% gluten-free diet. The diet change is to try and keep your antibody levels under control. It doesn't work for everyone, but a surprising number of us do benefit even in the case of those who don't have coeliac disease (which is most of us).
Thank you humanbean for that very comprehensive reply and for the advice re going private as that is something I’ve been contemplating. I will look into your suggestions (I had more bloods the other week and I’m waiting to get a print out from the GP) and I will. Fingers crossed I can get my nutrients better balanced and see if that helps.
Very odd... I rang my GP last week about my bloods and was told “all normal, no action”. I asked for a print out and was waiting to hear back. But today after your reply rang again and my bloods weren’t on the system yet but yes he could get them printed out for tomorrow for me. Now I’ve had a letter from the endocrinologist come through with my blood results in and it says “significantly elevated rheumatiib factor. Will refer to rheumatologist for further advice and management. Also has borderline Testosterone. Will monitor and review in 4 months...
2 years ago our son came home from nursery with a viral infection that left my wife with severe rheumatoid arthritis for which she is medicated and we’ve had to make a lot of changes to the house for her. I’ve had fatigue, cognitive impairment, joint and muscle pain for 30+ years, was diagnosed with Post Viral Fatigue Syndrome (ME) 20 years ago. I have asthma and have had significant history of upper airway infections (which normally get ignored by the GP because my chest is clear. Well of course it is the infections are normally around my thyroid area and fatigue etc just gets put down as ME. Since the virus my symptoms have got worse so thought it had affected me differently to my wife. I have slight joint pain but nothing I would have put down to arthritis. Clearly I was wrong on that. Will be interesting to see what happens now and if it helps.
Hi muscles - it seems you have had a long period of ill health with little investigation over 20 years. As you have chest infections and rheumatology tests and hormone tests recently may be these might show an autoimmune disease, with results from the specialist. The increase in energy after taking a thyroid supplement, might show an improvement in your cognitive impairment, but too much thyroid supplement could may be affect your sleep. Sleep deprivation can cloud your thought, affect your memory, and moods. When you are a parent you are more prone to broken nights of sleep. From personal experience I have found that lack of energy might be due to any number of deficiencies or health problems but if your immune system is affected, you may be prone to these symptoms. Food allergy tests
might prove helpful. Also a test for diabetes, might show up high blood sugar.
I took a private test through an NHS linked pharmacy with a new finger prick blood test and found after years of IBS I had multiple food allergies. Since removing these foods, I am much better. As a type 2 diabetic, I know that fatigue and muscle problems are common as are common infections. You can get the food allergy test through Alphega pharmacies Uk , and the diabetes free from Some branches of LLoyds chemists in many areas. Hope you start ticking the boxes and finding answers. The food allergy test only came in since January this year - wish I had had this test years ago!
Thank you Hawii60. I’ve come to the same conclusion that it’s an autoimmune problem. Asthma, hay fever, eczema, possible Hashimoto’s and possible rheumatoid arthritis... too many autoimmune issue to be a coincidence I think.
I was tested for diabetes on my last tests and that came back ok. They also tested for celiac but blood test are always accurate for that.
After being diagnosed with ME 20 years ago I went gluten free which did help my IBS a bit. About 3 years ago I had an intolerance test done from my hair, which isn’t going to be overly accurate but it gave me a starting point. Which showed a vast range of food intolerances but mainly lactose. So I’m now on a lactose free diet, but have managed to go back on to gluten with no negative effects. The blood test sounds interesting and I will look into that thank you.
I’m now on K2 and magnesium as well as the vit D, folate and B complex. As I know my rheumatology appointment will take a while I’ve also started self medicating for my thyroid rather than then herbal ThyroAid and there is definitely improvement. I would say I’m at about 30% capacity now.
My sleep has never been good. Particularly when I worked shifts, with an average of 2 hours a night (it wasn’t unusual for me to go 3-4 days without sleep). Got addicted to sleeping pills, was taking 4-5 time the max just in the mad hope of getting some sleep. Got really quite desperate for a while. That did improved naturally after settling down with my wife, but yes as much as I love him Oscar did disturb my pattern again. I’m taking a sleep formulated CBD oil which is the only thing I’ve found has any effect. Unfortunately it doesn’t help me get off but once I am asleep I’m sleep much better and wake more refreshed.
Wow - you really have tried everything - Have read some interesting information concerning the hormone which is produced which helps you get off to sleep in food.
The hormone, linked to growth hormone is found in high quantities in pineapple and to a lesser extent in tomatoes, and bananas. Apparently, research has shown that we are like many animals in our sleep habit waking up when it's light, and sleeping when it goes dark. Artificial light is not recommended as this disturbs the sleep pattern. I used to have a night light as getting up at night, due to diuretics, can be habitual, but now I just open my curtains to let the moonlight show through. It must have been so difficult with shift work, as your body clock is altered. You might find you have a time of day when you start sneezing, or sniffing - this is when your immune system is at it's lowest.
I don't think many parents get a full night sleep when kids are little. I found I was not allergic to gluten but wheat rye barley maize, cornflour and rice. That certainly has knocked curries and rice and all my favourite breads and pastries on the head.
New research from the US has indicated that gluten can contribute to Alzheimers disease. There is little research in the UK on these multi grain and dairy allergens, which may harm the colon and the brain. Have read that extra virgin olive oil, and coconut oil, which you can buy in some supermarkets can help with heart, and wards off staphylocci infections, - the coconut can ward off viruses and fungal infections such as candida. Expect you know all this already- Marz and Heloise are very helpful contributors for giving out alternative specialists recommendations, on diet and health
on thyroid unlocked. their broadcasts, and podcasts. Large doses of vitamin C are recommended daily, may be spaced out during the day, to help the adrenals, and thyroid, and to help the airways with bronchial problems. Think there is UK research recommending high doses of vitamin c in cases of cystic fibrosis 2017 and lung disease. Hope you continue to improve.
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