I was diagnosed 17 and a half years ago after 5 years being unwell with no energy, dry skin, dry throat and bad headache's, also every joint in my body was in agony. It was my Rheumatologist who diagnosed me. Then 7 years ago I was diagnosed with hypothyroidism and now on 200mcg levothyoxine. But I've piled on the pounds and still have dry skin, dry throat, headaches and hurt all over. My levels are saying normal but still feel so bad. Tired all the time and fall asleep and unable to stop me falling asleep, my back, neck, knees, hands and hips are in agony. I have had as spinal fusion on L4/L5/S1. Done and still have bad back pain with further problems further up and 2 degenerative discs in my neck, when had spinal op I had bad nerve damage which was tried to be repaired best possible but was unable to repair all. I've had both little fingers operated on twice on both, and 3 operations to my left knee and 2 to my right with arthritis in both as bone on bone. I'm still having 3 migraines per week and have zero energy and so tired. I don't know where to turn next as T3 meds are not offered in my doctor's in UK. I'm due my yearly checkup, blood tests so will book to see doctor's to have them done. I've got a goiter on my thyroid they are keeping an eye on and multiple cysts. 2 weeks ago I woke during night with severe chest pains and was struggling to breath. The pain w as down my left arm and down my neck going into my collarbone. I was worried and didn't want to wake my wife up if it was nothing bad of waste time ringing for ambulance. But since then I'm still having chest pain on and off so if gets bad again I will ring for ambulance. My life is ruined and my social life has suffered. I do airgun shooting at a range when I can as you are sitting down all the time. But even that has stopped lately. I wish my doctor's would give us T3 armour as I think Levothyoxine isn't doing anything. Sorry for my rant
Is there anything that can be done to stop this... - Thyroid UK
Is there anything that can be done to stop this tiredness, no energy, pain and weight gain.
Firstly, if you are ever worried about symptoms, especially that come on in addition to your regular ones, you can phone 111 for a chat with a Dr. They will advise you and/or decide if an ambulance needs to be called.
Unfortunately, as we acquire different health conditions it becomes difficult to separate one from the other, in terms of what's causing symptoms (I have a full length deterioration of the spine, kyphoscoliosis, and RA, and understand what you are experiencing); so having optimal thyroid levels, and not just anywhere within their respective reference ranges, is important. Therefore having copies of your blood test results is necessary if you are to manage your thyroid health well. Do you have your last ones that you can post here for folks to comment? Unfortunately the prescribing of either T3 or NDT may not be initiated in primary care, and you would need an Endocrinologist to do that for you, as a 3 month trial.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Come back with new post once you get results and ranges from existing tests, or have had new tests done
Already been tested positive for antibodies
do you have any actual blood test results and ranges you can add?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Your antibodies are high this confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Ask GP to test vitamins too
Assuming coeliac test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Hi yes I was sent to see an endo and he said I was tested positive for antibodies and said it was Hashimoto's thyroiditis. I've not tried to be gluten free but may give it a go. Worries me is the cost buying gluten product's separately to my wife's. But have been thinking about trying it. I was on D3 last year but my GP took me off it after 3 months due to cutbacks in certain medicine's. I'm due my yearly check and blood tests anyway. Thank you.
Can you get your T3 bloods checked privately to determine if you are not converting T4 to T3 very well. I did that after feeling complete weakness for nearly a year. I’ve now received my T3 a month ago and boy what a difference it has made. I’m due for blood tests this week to see how things are. I also have adrenal issues which have not yet been resolved which can also give you lots of issues
I am so sorry you feel so poorly and wish you well, it's about time the medics looked at all of us and listened it costs them more to treat the extrat conditions we get caused by not being treated correctly that it would if we got the treatment correct in the first place !
This really makes me so frustrated as if we were on drugs they would happily prescribe Metadone which in 2009 cost £3,000 -£5000 per user 😡
I feel another letter to my mp coming on and what about all monies wasted on misdiagnosis.....
Rant over enjoy the sun 😎X
Thank you for your reply. It angers me so much. I've said to my GP about T3 but just says no it cost to much. But my GP isn't that helpful.
Hi, I agree with all the posts above. It might benefit you to get your vitamin D level to around 100. This helped me with reducing the frequency and severity of my migraines. Plus also add magnesium. I find the sleep lotion from betteryou is good for keeping my shoulders more relaxed which helps with migraines too. (Obviously not perfect, but helps a lot).
Only take the k2 if you’re not on any blood thinning meds (including aspirin).
I also felt that T3 would be of benefit, but you will probably need to see a private endocrinologist and get your T3 (if required) with a private prescription from abroad. (Maybe Germany). See Thyroid UK for loads of info and a list of recommended endos.
You might find you feel a good deal better once you try all the recommendations (and it will take a few months) and not need to go the T3 route. 🙂
Hi thanks for reply. I've been in D3 and was taken off it after 3 months. Not had blood test since but I'm due my yearly blood tests and checkip. Not tried magnesium yet may try that. Thank you.
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
Likely to have low ferritin, B12 and folate too
Make sure GP tests these or test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Come back with new post once you get results and ranges
I am sorry to hear about your problems. I started from level ground after having my thyroid removed three years ago. Before I wasn't on any medication at all and no other health issues. After 8 months on Levo, various doses I put on weight but the pain was terrible legs back etc. I then joined this site and was told to do a private blood test, one which included everything thyroid plus Folate, B12, Ferratin, and Vitamin D. I posted on here with the ranges for answers. I then started self medicating with NDT since then I have tried various doses but have now hit on the correct one for me.
If you stick with this site you can feel better again, good luck.
Hi, I have been watching Dr Westin Childs on you tube he is so informative. I am in the same boat as you sadly. Trying to get my vitamins up, and had to cut out sugar which was causing major problems. Best wishes.
Ths level is 2.04, T4 was not tested.
Swelling at the bottom of neck, Armour and high ft3
Help. Feeling really bad
