Struggling going it alone!: Hi, I am just trying... - Thyroid UK

Thyroid UK
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Struggling going it alone!

1piglet
1piglet

Hi, I am just trying again, as I only received a couple of replies to my last post - and helpful as they were, they didn’t address my immediate problem.

In my last post I had been taking Dr Lowe’s Thyro-Gold 150 mg for two weeks and was at the two week point where I should have started on 300mg. Though I hadn’t had any improvement and was querying whether I should take that next step. I gave my blood work before I started the NDT in my last post and, to my untrained eye, they looked good but I was told when I discovered that I was homozygous for the faulty DIO2 gene that my labs could look OK even when I was feeling bad, could someone confirm that for me.

Since then I have started taking Thyro-Gold 300mg, and I have been on it for a week, but I still don’t feel any better, in fact I feel worse in some ways and very “flat” in my mood, which isn’t normal for me, and also I am having tummy pain – has anyone else had that? Of course, it could be something totally unconnected. Plus I feel uncomfortably wired in the morning which wears off later in the day. The only plus is that my temperature has now risen to 36.3. My question this time is: have I given it long enough to know that it isn’t going to work for me – or do I give it more time.

If it is advised that it probably won’t work for me now, do I go back down to one a day for a short while or can I just stop taking them.

When I was first medicated I found the levothyroxine very difficult to take, in the end I stayed on just 25mcg, even putting me up to 50mcg made me feel wretched. Could the T4 in the NDT be making me feel bad, I didn’t think the natural T4 would have the same effect.

Any help would be greatly appreciated.

.

17 Replies
oldestnewest

In those results in your last post, you do not show any signs of poor conversion. Your FT4 was low but your FT3 was over mid-range. That's good conversion - especially for someone on only 25 mcg. But, you were under-medicated.

However, having a problem with levo is not necessarily due to poor conversion. I converted perfectly well, but still couldn't tolerate T4. And, the T4 in NDT was even worse than synthetic! I'm only well on T3 only. Have you ever considered taking that route?

That said, you haven't really given ThyroGold a fair chance yet. I think you should at least finish off what you've bought before deciding it's not for you. And that buys you time to decide what you're going to try next. Don't just come of the ThyroGold with nothing to replace it. :)

1piglet
1piglet
in reply to greygoose

Thank you, greygoose, for your help and like you say, I too thought the results look good, but I still feel bad. I thought that I had read somewhere that if you had a faulty DIO2 you could have good lab results, but still not feel good - do you know anything about this?

Unfortunately the levo, even at 25 mcg, made me feel bad, my GP said the same as you that I was undermedicated, but when I was put up to 50mcg I felt so ill that she had to put me back down to 25mcg.

It is interesting to see that you don't have a conversion issue yet still couldn't take the T4 - perhaps I am re-acting to something other than the T4 that's in the pill. I think you are right, I should finish my supply before I decide. Just needed to be told that, it's a bit scary going it alone! Trying T3 only would be my next course of action, should this fail. It's good to hear that you are now doing well on T3 only.

Thanks so much for your help.

greygoose
greygoose
in reply to 1piglet

I didn't say the results looked good. I said you didn't show a conversion problem. You were under-medicated, so that's why you didn't feel well.

I thought that I had read somewhere that if you had a faulty DIO2 you could have good lab results, but still not feel good

No, I think you're muddling that up with something else - thyroid hormone resistance, perhaps. The faulty DIO2 just means that you have the propensity for poor conversion.

Did you try more than one brand of levo? They don't all have the same fillers. And you're lucky in the UK that you have the possibility of trying different brands. Here in France, we only have one brand. :)

1piglet
1piglet
in reply to greygoose

No I have only tried the one brand, when I asked if I could try something different, I was told there was nothing else. But I am not in the UK, I live in Spain - we're practically neighbours! I think it is worse here than it is in England re the T3, so I shall have to go it alone if I go down that route. Yes, I could be muddling it up with thyroid hormone resistance - I have been reading about that lately. That's the trouble, with this brain fog, I seem to be reading for hours but not taking anything in!

greygoose
greygoose
in reply to 1piglet

Yes, I know what you mean about the brain fog! Reading the same sentence three times and still having no idea what it means!

OK, I don't think there is any T3 in Spain. So, yes, you would have to find a supplier if you went onto that. And, I think there is only one brand of levo in Spain, too. :(

shaws
shawsAdministrator

You did get a few responses to your last post and the majority of members don't have much knowledge about NDTs but I've looked on your Profile for some information but there's only your name and no background. However, when people are new members they're not always aware of the usual procedures.

It is good to give some background then you don't need to be asked repeat questions as members can look at your Profile background.

Anyway, I'm sorry you are struggling but Tammy Lowe can help with advice as she is the widow of Dr John Lowe who invented Thyro-gold especially for it to be non-prescriptive thyroid hormone.

I am assuming you copied the information from Thyro-gold and if not, I shall give links below:-

Copy and paste onto a new page the following tinyurls

tinyurl.com/ycxpz565

tinyurl.com/ya5blrr2

tinyurl.com/y7ejh9sh

Dr Lowe always emphasised that we take one daily dose with one glass of water and 1/4 tablet increase every two weeks but the details are in the tinyurls.

Also our vitamins/minerals also have to be optimal as deficiencies can also cause symptoms.

Dr Lowe only took one blood test for the initital diagnosis of a patient and thereafter did not take any blood tests at all as he based it all upon the patient's symptoms, i.e. relieving them. This was how doctors used to treat patients before the introduction of blood tests and levothyroxine. I am aware he suggested a small increase every 2 weeks always keeping an eye on symptoms and when relieved until you are symptom-free. If either pulse or temp increase too high drop back to previous dose and that should be your optimum.

As you are taking NDT which contains all of the hormones a healthy gland would do, the DIO2 would only occur (I believe) if you were taking levothyroxine alone.

I hope you feel better soon as I know it can take sometime to get to a dose which relieves all symptoms. Also blood tests were invented for levothyroxine alone, i.e. T4, therefore if we take NDT (T4, T3, T2, T1 and calciton) results cannot correlate.

1piglet
1piglet
in reply to shaws

Thank you, shaws, for your help. I had hoped you would reply, I have read some of your writings on Dr Lowe before and that encouraged me to try the NDT, as my GP and Endo are very unhelpful I had to make the decision alone.

I did contact Tammy, the late Dr Lowe's wife, initially, and she was so supportive and helpful, I really hoped it would work for me, but I am struggling at the moment, I just really wanted to find out how long it took to see any improvement, but we are all different. Greygoose is right, I think, in that I haven't given it sufficient time, so I shall finish off my supply and see how I feel at the end of it.

Thank you for your interest, information and the tinyurls, I shall have a read now!

waveylines
waveylines
in reply to 1piglet

Ive taken ndt for over 10 years now. What I can say is you have to find the one that suits you. For me WP & Acellas NP Thyroid suit me but I felt ill on Naturethroid, Armour (after they changed the fillers) & Erfa. Apart from Erfa the other ndts all have the same ratio of active ingredients. The effects on me were very different!! A pharmacist once told me that not omly is it the fillers but the mechanism for the release of the active ingredients that can vary the uptake according to manufacturer & even the compression of the tablet can affect uptake. It really is trial and error. Everyone responds differently.

What I would say though is that you have definately not given the Thyrogold a proper chance. It takes the body a long time to adjust to change in hormones. Usually its advisable to leave 6-8weeks before changing the dose. Am surprised you are planning to go from 150 to 300. That seems a big leap to me but I dont know the product Thyro Gold.

I was taught to tiltrate upwards very slowly in quarter grains. This is to avoid missing your sweet spot. Otherwise when you change the dose up in big jumps or and in large increases the body takes a few weeks to catch up & then you end up over treated with symptoms.

It really is a case of the tortoise not the hare that wins this race. Tedious but worth it in the end. It means finding the right dose & type/brand of thyroid meds for you is not going to be a quick fix. You need to allow a lot of time.....months not weeks before giving up on a brand.

What I did was to keep a careful daily log of the name, dose of meds, the supplements, my temperature & pulse taken first thing & my symptoms. I attached any blood test results. This gives a good record to look bavk on to see trends. Believe me I was tempted to rush through with my tiltration of meds but it NEVER worked as I would end up feeling really ill & having to start again.....so all that did was waste time!!

By the way am not aware I have a conversion problem either but I never faired well on Levothyroxine. I ended up on a massive dose of the stuff & felt terrible. Neither did I respond great to synthetic T3 added to levothyroxine but it was an improvement but no where as good as ndt. Thats me -others fair well onlevo and synthetic T3....if you cam get the T3 that is..

The process of getting the thyroid meds right is frustrating & slow. Its time consuming but once you find the right meds for you and the dose that correct (with some slight variation for cold winters or very hot summers) your set & life gets much much easier.

My advice is stick with it. If after a few months youre getting nowhere with the Thyro Gold try a different ndt......

Hope this helps.

Jnetti
Jnetti
in reply to waveylines

I started on thyroxine at the beginning of June so don't know about ndt, but it's certainly a slow job.

Finally got up to 100mcg in November and have a blood test due in the New Year. I'm at last starting to feel as if it's almost enough.

Never had T3 tested though so can't help there

1piglet
1piglet
in reply to waveylines

Hi waveylines, such a lot of helpful information - there is so much to consider, isn't there, thank goodness for this site, so important for someone like me who doesn't have the backing of GP or Endo. I think the general consensus is that I haven't given it long enough so, as I said above, I shall finish my supply and then re-assess. The good thing about the Thyro-Gold is that you don't need a prescription. I live in Spain and there is no way I could get a prescription for NDT or T3.

I also take your point that different potions suit different people, so I shall see how I feel at the end of the course and then maybe try other NDTs before looking at T3 alone (though how, without a prescription, I am not exactly sure at the moment - I'll cross that bridge when I get to it)! I am just beginning to see that it is a long journey - but is worth persuing!

Good tip about the log too. I have been logging my temperature and pulse - and actually they have gone up slightly, but I shall add how I am feeling according to what medication and dose I am on.

Thanks again for all your helpful information, I am glad you have found what suits you.

I am the same with DI02 gene and like you much more than 25 mcg is challenging but trying to manage on highT3 replacement,even using circadian dosing patterns caused me enough thyrotoxic effects to cut it back to physiologically normal levels ie what a healthy thyroid gland would contribute (10 nmol ) which is something between 6 and 9 mcg T3 dose and which I take split 70:30 5 am and midnight (or thereabouts) . what I have learnt is that I need just enough T4 for my low velocity intracellular D 2 conversion to provide the bulk of T3 and maintain smooth signalling in the Hypothalmic pituitary feedback loops. Too much T4 will suppress D2 conversion by cutting back DI02 half-life, sometimes drastically. . . I suspect this may be a much more significant phenomina than for those without slow D2. And effects /contribution may not show up well in blood tests because a) intracellular D2 T3 is a distinctly separate compartment to plasma T3 and may equilibrate much more slowly than thyroglobulin and gut absorbed oral replacement T3 and b) research is still out on exactly how much intracellular T3 is produced, compared to what is known about circulating plasma levels. So, back to the T4 conundrum... I also suspect (based on published research and my own experience) that the T4 peaks after ingestion create unphysiological levels in circulation that some people cope with less well than others. This may be of particular significance for slow DI02 in that the negative feed back of even transiently raised T4 on DI02 could exacerbate our weaker D2 response... This may in part explain why some of us describe T 4 as feeling toxic! well toxicity is always a dose related response whether its salt or Strychnine and so the challenge with replacing thyroidal T4 with Levothyroxine, the former being gradually released over 24hrs in response to TSH feedback loops etc. is to get enough for normal D2 T3 production without the overwhelming (toxic) effect of single large supra-physiological doses of T4 in one hit.. .This way of dosing,the received wisdom of researchers, endocrinologists and drug companies is not without reason but may suit them and their perspectives better than Someone who is actually hypothyroid... So, is there a better way? First I tried splitting my 100 mcg Levothyroxine dose 50:50 midnight and 5 am but I could still feel the levothyroxive challenge and its side effects (toxicity) so then I tried splitting into 4 25mcg does every 6hrs with a very small percentage extra to make up for the lower gut absorption of non-fasted dosing. I'm still experimenting with this but so far, an extra 10-12% seems to compensate and give the same effect. There's a lot of guff talked about when to take Levothyroxine, it adds T4 whenever you take it with a variation of absorption of around 20%. Bearing in mind that all replacement is guesswork in relation our individual set point, trial and error being part of our unique challenge, to my mind adding another small (but known) variable in terms of absorption is a small price to pay to avoid the unknown variables of T4 max after gut absorption and DIO2 conversion issues, both of which may be much more significant in scale and effect.

Hi HashiHouseman

I had to read your post a few times to get most of it, but what is "low velocity intracellular D 2 conversion"? I tried to look it up but only fund some very technical articles that are likely beyond me.

I know thyroid hormones affect every cell of the body but not the connection with D2 (vitamin D2?)

Must admit I'm just curious - find the whole thyroid thing fascinating, though it would be nice to find out about it for some other reason than having a thyroid problem!

Hi the low velocity thing refers to a comment a consultant geneticist made when giving his opinion of the effect of the polymorphism in the DI02 gene after I was tested for this, where he described its affect on T4 - T3 conversion as being reduced in velocity compared to not having the polymorphism. I hope that helps?

So how is vitamin D2 conversion connected?

Ah... sorry not Vitamin D at all but thyroxine diodinase enzyme D2!

Right, got it now!

Hi Hashihouseman, Wow, I am afraid this is a bit heavy for me, with my fog riddled brain!! But I shall go through it a few times as there are a few nuggets re the faulty DIO2 gene, and I have been desperate to try and find out more about it, but haven't seen any articles explaining it simply.

Thank you so much Hasihouseman for your information - I am going to make a nice cup of tea now and read it through again! Probably several times! Glad to hear that you have now found how to help yourself, it seems not one size fits all, and we must keep searching until we find the right medication and dose that suits us. Thanks again.

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