I'll try not to make this a woe is me post lol but I'm really needing some advice.
Long story short - naff doctor has insisted for years my thyroid is fine and all my symptoms are down to Narcolepsy and fibro (which they could be) so I took a private blood test which came back as my thyroid at 5.7 and vitamin D3 deficiency. I took the results to the doc, he disagreed with them, did his own tests and said he was happy with the results.
So I sourced NDT and began taking Thiroyd and 10000 of D3 daily and 800 K2. I then delved deeper and the more I found out the more it seemed I needed to take - I now rattle as I walk and it's getting nigh on impossible to regulate when I take each different thing.
On top of Thiroyd, D3 and K2 I take Selenium (which gives me the squits), Iodine (which is gross), B12, Pro biotic, Magnesium, Krill oil and also Modafinil for Narcolepsy and the contraceptive pill.
8 months later and I'm still struggling and not losing weight. I can't go to the doctor as I get nowhere (cannot change doc either as no others here). I have acid reflux practically every day which I think is caused by the Narcolepsy meds and I'm now at my wits end - I just cannot carry on like this.
I used to exercise alot _ HIIT, Insanity, turbofire etc but there's no way I can do that now. I've been walking a few miles on my treadmill every day just to make sure I get some exercise and I'm going to be starting a daily yoga retreat when I get off my holiday next week.
Does anyone have any advice for taking these pills? I take the NDT first thing on an empty stomach and don't eat for at least 2 hours after and I take the pill in the evening so it doesn't interfere with NDT. But when should I take the other stuff? Is the other stuff pointless? Is there any other supplement I could be taking instead?
I also had food intolerance tests done which showed intolerance to lactose, gluten, yeast, wheat, msg, tomatoes, peppers, potatoes, eggs and random other stuff - basically I may as well have a plate of air! Would a paleo or low carb diet be beneficial?
Sorry for being long winded but I'm gradually giving up. I have no energy, I'm depressed alot, sleeping alot, unable to lose weight and it's just really grating now.
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When were those tests done? Have you retested recently?
10,000iu D3 daily should only be taken for a few weeks at most so it's essential to know what your current level is and adjust dose.
800 K2 - is that mcg? 90-100mcg K2 is sufficient for up to 10,000iu D3.
If selenium gives you the squits, either change brand or stop taking it.
Iodine - did you test first and found to be deficient? If not then you shouldn't be taking iodine. It can make hypothyroidism worse, particularly if you have Hashimoto's as it can exacerbate antibody attacks.
If not done recently then you need a full thyroid panel to include
I suspect this is going to be the problem with trying to medicate myself - there is so much conflicting info out there that it seems to be pot luck whether I get the right one or not
Tests were done last year and I haven't had private ones re done though the doc did some (again last year) and said I was fine. I have been looking into more private tests as I'd like a complete one but not sure which is the best test to go for.
I've been taking 10000 D3 for 8 months or so along with the K2. I checked the pack and you're correct I take 100 not 800. Not sure how I got that so wrong.
The selenium I've stopped over the last couple of days. The iodine I started taking because the info I sourced seemed to suggest that it was needed for the Selenium to work properly?
I will use that list you suggested to check out some private blood tests and hopefully find one that covers it all, thank you for that
I just don't see this ever getting better. I live in the far north of scotland, our surgery has one doc and when I tried to get into the surgery in town they said I was out the catchment area (we still have that here).
Honestly this doc is useless. I refuse to go to him now. I last went at xmas because my asthma was really bad and I had Laryngitis too. The surgery keeps forgetting to put my blue inhaler on repeat so I had to go see him. He literally tried to tell me I had a chest infection even though I was breathing rapidly and could hardly breathe. He was going to send me home with antibiotics and an inhaler "if I really needed it".
Fortunately he took time to take some bloods and noticed that my breathing was really bad so rang the hospital for advice. Next thing, I'm being ordered straight there and put in quarantine. They suspected pneumonia from his description. Turns out I was having an asthma attack and 2 thirds of my lungs were not actually working properly hence why I couldn't breathe. I swear if that doctor had sent me home I would have died that night, I knew it was asthma but he wouldn't listen. Luckily the hospital knew wht they were doing and put me on a nubuliser.
We have a couple of recommended labs who do a test that includes everything I listed.
Medichecks - Thyroid UltraVit medichecks.com/thyroid-func... They have random special offers on Thursdays, when this one is on offer they reduce it by £20, so you could check this coming Thursday.
Blue Horizon - Thyroid Check Plus Eleven bluehorizonmedicals.co.uk/t... - and for this week there is a code for 21% off - SUMMER21 so that's a good price.
I think it may be possible that if you've taken 10,000iu D3 daily for 8 months you may have raised your level so much that you are in the "toxicity" category now.
Post your new results when you have them and members will comment.
It's the other way round. If you need to take iodine, you usually need to take selenium for the iodine to be used correctly. I grain of NDT apparently contains about 130mcg of iodine, so it's not likely that you need to supplement it unless you are very deficient.
Re your private tests doctor ignored- worth posting here for advice? Not sure I understand what you mean by 'thyroid at 5.7'.... I am assuming it's a TSH result. High, but not the 10 Gps now seem to expect before treating hypothyroidism. Have you had thyroid autoimmune antibodies tested for Hashimoto's ( might be causing your poor Vit/ mins)? Yes it is confusing re timing all your 'meds' that you definitely need daily, and supplements. You only need an hour between taking your NDT then breakfast( two hours if you did other way round).i take my T4/T3 in two doses 6 am/6 pm, and found swopping some supplements to sublingual/ beneath tongue doses eg B12 and D3 with K2( mark 7) ... easier as gets straight into blood system, so don't conflict with anything in stomach. It is the iron that I sometimes can't find a 4 hour slot to take it!
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 or NDT don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Acid reflux is often due to low stomach acid, a common symptom of Hashimoto's
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
I have just ordered the thyroid plus 11 test. It won't come before I go away Friday night so will have to wait until I get back the following weekend. I will do it first thing on the Monday so i know it definitely will get there - royal mail is pigeon carrier here.
I am so hoping to get some answers with this test. On my last private test 1 year ago my TSH was 5.7mlU/L and my FT4 was 10.12pmol/L
I'm not sure what I can do with the results as my doctor just will not listen but I have gotten to the point now where I am going to make him listen, failing that I am going to make a complaint about him (there is so much more than just this thyroid business that is an issue with him).
I'm kind of feeling hopeful that maybe I will get some answers but at the same time I'm really anxious that it will be a fight.
Now I just need to get a handle on this acid reflux and I'll be happier
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