Help

[gully]

Ooh dear was feeling ok and burning hands and feet problems have returned I'm feeling very low and lethargic sick of trying to get help from docs ! Is there one thing I can take along with thyroxine (100 mg a day ) instead of a load of supplements?? 

[NatChap]

If you're feeling low and lethargic then maybe you need to increase the thyroxine? 100mcg is a fairly low dose.

[juliat]

I have burning and tingling feet and tingling hands, wobbly gate sometimes and tinnitus, Through this site I followed a B12 link and as a result I am getting tested for pernicious anaemia on Friday. (low B12) which can go hand in hand with low thyroid.

suggest you do the same AFTER reading this web site

b12deficiency.info/what-is-...

don't rely on NHS blood test.

I printed out pages off the site and gave them to my doc.

( she has quite a selection from me know on Thyroid etc)

Lets educate them one at a time!

juliat

[BadHare]

Hi Gully,

My burning limbs are considerably less so since I started taking NDT. I've just added some T3 on top, as I'd started to get fatigued again in the afternoons, though later, & less so than before I started self-medicating.

I also made sure my B12, D & magnesium, etc, intake were increased, but I'm sure you're doing this already.

Mel

[Hidden]

Could be small fibre neuropathy. I have this and my doctors have only passed the buck with mine. I've not made it as far as a proper diagnosis or a cure and mine affects both legs and arms and mouth now. The pain has diminished but I'm turning numb. The only think that helps me a bit is taking an antihistamine each night - which defintely takes the edge off. I'm on T4 and T3, AdCal D3 and B12. Trying to be methodical in getting to the bottom of mineand am going to be tested for Amalgam allergy sometime because of burning mouth. Magnesium spray is quite soothing and may help you long term. Best of luck finding the cause and treating appropriately. 

It is depressing but after five years of it I'm sort of used to it now - I try to avoid hot baths and if I do succumb then I have a cool shower after and this seems to help. 

[greygoose in reply to Hidden]

Are you taking magnesium? If you're taking vit D3, you should take vit K2 and magnesium with it.

[Hidden in reply to greygoose]

No I'm being methodical so I know what helps or doesn't. However I have K2 in bag somewhere and will start it in a few weeks once got new T4/T3 regime established. Thanks! 

[greygoose in reply to Hidden]

Well, that's the right way to do it, one thing at a time. But don't wait too long to start the K2. The calcium level will have been building up since you started taking D3.

[Hidden in reply to greygoose]

Oh thanks I didn't realise this. I've been prescribed AdCal D3 since 2013 - I think my D levels are much better now and I'm assuming my calcium levels are okay too. I will ask my GP if this has been recently checked though. My old GP said levels usually acclimatise as the body adapts to supplements. I've never had a bone density scan or and have white powdery warts all over my legs and a  fine white powdery layer on my toes like dry skin that never clears. I wa thinking of Calcinosis. 

Unfortunately, although I like my new GP very much, the practice are archaic about refusing me print outs of my bloods and I've had to pester for inflammatory markers and Thyroid bloods! I'm new to this practice but have made an appointment in two weeks about possible nail fungal infection and to explain to GP that i will be insisting On print outs as it is my right on the NHS to have these if want them. It's an important part of self management and in their interests in the long run, that patients work out what they need to improve on and flag things up if we feel they might be overlooked otherwise. 

Does K2 help the absorption of the calcium then? I ask because I've had bowel issues recently that suggest too much calcium and also my progressive neuropathy is an ongoing issue. 

[greygoose in reply to Hidden]

It is your right under the law to have a print out of your results, and they are breaking the law by refusing. There have been lots of posts on here on handle this type of situation, so l would suggest you do a search for them.

I do not understand why doctors prescribe calcium supplements without doing tests. Calcium supplements are bad things to take even if you are low in calcium, they can cause things like kidney stones and even heart attacks. Just taking vit D3 will increase calcium absorption from food, so it's doubtful that you even need that extra calcium.

K2 does indeed make sure that the calcium goes into the teeth and bones, and not into the tissues. I think you very much need to get that calcium tested, and get onto a D3 supplement without calcium. It certainly does sound like you have an excess of calcium. You've been taking it for a long time.

[Hidden in reply to greygoose]

Thanks. I'm not at all fazed by sticking up for myself over my rights as a UK citizen using the NHS. I work in a lay capacity for a healthcare improvement organisation and will insist on print outs as an important part of the patient doctor relationship. I firmly believe in working with medical professionals and have no truck with any idea that they can withhold information relating to our health from us!

Re the calcium issue - I think mine has been checked but I have spent a lot of time on steroids and I don't drink milk and my calcium levels were low.

But I'm not taking steroids anymore, I do eat other calcium rich foods and so I will ask for my calcium level to be checked when my thyroid bloods are retaken next month prior to my rheumatology appointment. Thanks for pointing me in the right direction!

[greygoose in reply to Hidden]

You're welcome.

[greygoose]

If you mean a multi-vit, then no. A multi-vit won't help. Nutrients need to be supplemented individually, according to your levels.  

[jamesal0]

Thyroxin builds up in you system over time and poisons you - its called drug induced parkinsonism. Just have a break from thryroxin for a few days and you will feel much better. If you are feeling like this you will have a ton of T4 in your system and you could probable go for a week without going Hypo. But you obviously cant do it for ever.

I would get on NDT because it is easier to live with - not perfect, but 10 times better than Thyroxin. I have to split the NDT dose up through the day. I cant take 60mg in one go, I go Hypo for a few hours.

It's also important to drink lots of water, get plenty of sleep and do as much exercise as you can make time for. Flush and Pump and Revive (I know I know)

Start listening too your body - if you feel something think about the why when where, write it down, experiment with foods, diets, NDT brands, qualities, pure T3. Do one thing at a time over a couple of weeks or months, otherwise you get lost. When you get lost return to something that worked and you documented before. Be careful to have a break between drugs - like when you go from Thyroxin to NDT - you can easily get confused but really its the two drugs interacting.

I can't believe Diabetics can test their blood sugar 5 times a day and poor old Hashies get a blood test every three months. Our bodies requirement for Thyroid varies by the hour. How much exercise is it doing, how much brain activity, how cold or hot is it, what did you eat last night etc.

I wouldn't worry too much about what the Docs say unless you can find one that's a Hashi.

[Clutter]

Jamesal0,

Levothyroxine is not included in the medications which Parkinson's Disease Society say cause drug induced parkinsonism and for most people it is fine to switch straight over from Levothyroxine to NDT.

parkinsons.org.uk/sites/def...

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.