I have hashis, was given 50cg Levo in January and left at that dose for 5 months despite feeling awful; I asked for an increase and was refused ('normal' bloods after 6 weeks). My symptoms got worse and worse and in desperation I ordered NDT from Thailand as I assumed Levo can't be procured without a prescription.
I started taking it on 21st June and am now on 1.5 grains daily, which I take early in the morning and again in the afternoon. I follow the rules re. avoiding food and other supplements within the usual time frames, with an extra allowance for magnesium, iron etc.
My GP doesn't know I'm taking NDT. It would not go down well and I'll be honest, I'm intimidated by his attitude and all the gaslighting.
I'm pretty sure my cortisol is all over the place and intend to get it checked once I've got the money together (it's costing me a small fortune in private blood tests and supplements at the moment). I wake in the middle of the night with a pounding heart and feel very wired at times, especially in the mornings. There's been a huge amount of stress over the past few years: redundancy, two unexpected bereavements (including my mum), several house moves, fertility issues, an emergency C section etc etc.
Obviously, NDT isn't great if your cortisol isn't where it should be.
It's coming up to the point where I'd need to renew my Levo prescription. I have a few weeks' supply left over from last time. I only started the NDT because I was being kept on a minimal dose of Levo despite clearly needing an increase, and the doctor wasn't following basic protocol of retesting and increasing. He doesn't take kindly to any suggestions either. I think my GP will want to do a thyroid blood test again shortly (the usual TSH and FT4 only).
Obviously, my cover will be blown as the results won't reflect what they would had I stuck with Levo. So, what do I do? Go back on Levo as it's easier to manage, hope by the time my bloods are taken any evidence of NDT use has gone away and cross my fingers that my dose will be increased? Or stick with NDT now I'm on it, try and deal with my adrenals and come clean with the GP? He'd probably disown me but I don't actually care - my thyroid health has been dealt with appallingly anyway and this forum has been far more valuable in terms of support and expertise.
I've been referred to a neurologist because I've been getting peripheral neuropathy and numbness in my hands, feet and legs. This is an ongoing problem, starting maybe 4-5 months ago and continuing since starting NDT and I'm hoping it's down to being undermedicated and/or a vitamin deficiency rather than something more sinister. My B12 is actually a bit in the high side at the moment as I super-supplemented. I tested negative for lupus and Lyme disease (another GP in the practice suggested both as possible causes). Worrying. I'm also supplementing in order to address low vitamin D, ferritin and folate levels.
Please could someone help?
Apologies for the long post. And no slapped wrists re. switching medication, please - I've been well and truly stuck regarding getting an increase in Levo and went for NDT (having done my research) simply because I was woefully undermedicated and felt there was no other option open to me.
I can't imagine anyone on here would want to slap your wrists, you did the right thing. But, I don't think anyone can tell you what you should do, either. I guess we can only tell you what they did or would do under the same circumstances.
Personally, I think I would disown your doctor! He doesn't sound very nice. I would carry on with the NDT and just ignore all requests to get blood tested. He's never going to make you well this man, because he doesn't know enough about it. And, it appears, his ego and arrogance won't let him learn. So, to hell with him! lol
I must say, when I first started posting here (and was overly sensitive to your reply, and we straightened that out) you said something I always remember when in doubt:
'The less I see of doctors, the better I feel.'
It's stuck with me. And I no longer hold them in thrall. So thank you for that - it always makes me feel better!
Your B12 will be on the high side as you are supplementing. Only 20% of the test result is available to be transported to the cells where it is needed. Supplementing will give you a false high result. Your tingling of extremities could well be low B12 - testing MMA and Homocysteine are tests that if the results are high can suggest low amounts of B12 in the cells. Again Private Testing I'm afraid. Low Iron can have similar symptoms - so let's hope once all your vits and minerals are optimal things will improve.
I think many of us here take good care of ourselves without doctors input - although it would be so much better if we could be monitored. I live in Crete and test privately and follow the advice given here - so far - so good ! Link below about B12 - Signs and Symptoms ...
Thanks for this. I tick a lot of those boxes. I did send this (and other) information to the doctor - a female one this time - but she said my cells weren't enlarged therefore no B12 deficiency.
Of course, we know better. I'm not sure how open to this the neurologist will be but I can guess!
I don't know what the answer is. More private blood tests then self medication again, this time with B12 injections?
Would a gastroenterologist be the best qualified person to understand all this? I saw a great one last year but again, privately and with travel and the consultation fee it was very expensive.
Am not sure how good a Gastro Doc will be. I had my Terminal Ileum removed 45 years ago due to Gut TB and Crohns. Had six-monthly check-ups and not once did anyone mention B12. I had to learn the hard way and live with the consequences. I had taken a B Complex for years and thought all was well ! I now self-inject as I live in Crete and can buy OTC
The Active B12 tests the amount of B12 available that can be transferred to the cells where it is needed - so more informative than the NHS Serum test. However it still does not reveal the amount in the cells.
Most people have low magnesium due to depletion in the soil - and of course low thyroid. However you have to consider the chicken and egg - which comes first So once you have optomised your thyroid hormones - and taken maintenance doses of B12 - and continued with the magnesium it should all help - hopefully
Do you have any gut issues ? The Terminal Ileum is the area of the gut where the B12 is metabolised ready for its journey back to the liver for storage. Any gut issue can inhibit this happening in an efficient way ... as I know to my cost !
Hi, I've had gut issues since childhood. Started with pain in the lower left side and continued for years. Since then, many diagnoses of 'IBS' and within the past 2 years atrophic gastritis, which is chronic. I stopped taking PPI drugs as I think the real issue is low stomach acid. Unfortunately due to the gastritis I can't take digestive enzymes.
The reflux has all but disappeared lately so that's something!
The gastritis and stomach issues differ from the gut - small and large bowel are part of the gut. The Terminal Ileum is a long way from the stomach - it is where the small bowel joins the large bowel - both together are around 26'long !! Are ytou gluten free - sorry if you have already mentioned this ....
Hi, I am gluten free. The stomach problems are relatively recent. For years I struggled with IBS symptoms, all lower down, and they still come back although not as frequently.
Thank you. I do supplement with methyl folate as my levels were low when (privately) tested in January. I've given her plenty of information about B12 deficiency but she refuses to consider it. Looks like something else I'll have to self treat - probably by buying needles and ampoules online. It really is exhausting. I'm basically having to do a GP's job for them. Unpaid.
Hello, Sorry you are having such a rough time. Please can I suggest you move to a new GP practise. I have, because I was dissatisfied with treatment my husband was getting (not thyroid related), but it has helped me too. My GP is now testing my bloods (including FT3) and monitoring my drugs (although not funding T3) . When you move GP you do not have to give a reason for changing, just find a new practise and ask to register. Good Luck.
Thank you. I live in the Hebrides and asked two other surgeries about registering there. One refused as I'm out of their catchment area. The other (again, out of area but the only other alternative) weren't too keen but said to write to the practice manager and ask. Doesn't look promising. It's not great...
• in reply to
Hi little island
If you know anybody holidaying/living in Spain
A year's supply of Levo can be bought OTC for not many euros at all
Then take what you feel is right and do private medichecks every 6 weeks?
Do bear in mind that it is illegal for a friend to bring prescription-only medicines into the UK for anyone other than themselves and members of their household. Just because they can be bought over-the-counter in Spain does not make it legal to do so.
The risk might be minimal but it is very important that people are made aware that this is not legal.
I can make no comment on the legality, or otherwise, of someone in Spain first buying then sending them to someone in the UK by mail.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
But, I don't think anyone can tell you what you should do, either. I guess we can only tell you what they did or would do under the same circumstances. 
Does the dose of T4 and T3 sound too high
Medication, joint pain and muscle cramps
Cortisol level "normal"??? 
4am and still no sleep....again
