Reposting as no responses ? Change to NDT

[DJR1]

I am under medicated due to GP lack of understanding. I have Lichen Planus which I believe is caused by Levo and flares up with trial increase in dose. This is a cancer risk I do not wish to take. Think NDT would be best? Need a good supplier my husband is horrified that I should take such a risk buying off the internet. I have wasted too much time thinking about this and I am currently unwell. Please could I have advice and recommendations for a good source.

[Clutter]

DJR1,

You are undermedicated but if increasing Levothyroxine causes a flare up of Lichen Planus then it may be worth trialling NDT. What dose Levothyroxine are you taking?

[DJR1 in reply to Clutter]

Hello Clutter

I am taking 50 micrograms daily and it is not enough at all. I have been been given info about a source of Nature-throid. I have decided that this is probably the best way forward.

[Clutter in reply to DJR1]

DJR1,

I can see 50mcg is not enough because your TSH is high. I would have suggested you keep on at your GP or see another GP about raising dose but you said increasing dose caused LP to flare up.

50mcg Levothyroxine is equivalent to 3/4 grain (45mg) of NatureThroid. You should be able to quarter a 1 grain (60mg) tablet with a pillcutter.

[DJR1 in reply to Clutter]

Thank you very much for this. The GP's at this practice will not increase Levo to have a result more than midpoint of the reference ranges! It took me 2 years to get to a TSH of 2.5 (0.4-5) FT4 of 10.5 (9-19) before I was allowed to trial 75 micrograms but gave up after 3 separate attempts as the LP flared each time. Given up and will self treat as the next practice says I am out of area. It's been a struggle.

[DJR1 in reply to DJR1]

Should have said less than midpoint for TSH

[Clutter in reply to DJR1]

DJR1,

If you want your GP to increase Levothyroxine dose you could show GP Dr. Toft's article in Pulse Magazine a few years ago. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[DJR1 in reply to Clutter]

I have all this Clutter but he is very arrogant, it is not in the NICE guidelines or the papers from ?BTA. He refuses to read anything else and refuses to do a TFT more than once per year even if I am struggling. He is obsessed by over/under treatment risks as he thinks cardiac problems occur along with osteoporosis towards limits of reference ranges. Although I really want to increase the FT4, Levothyroxine is not right for me. I used to be a researcher with a university endocrine team and I know he is talking rubbish! Bizarre practice insists you can only see your allocated GP. I asked to change and it was refused as it is deemed awkward for him!

[Clutter in reply to DJR1]

DJR1,

I can see why you want to self medicate.

That leaves patients in your catchment area in a very bad place, essentially stuck with a GP they may not have a relationship with. You could contact PALS to see whether they will intercede with the practice to switch you to another GP.

[Hidden]

Have you tried going to the Thyroid U.K. Site for their list of thyroid friendly gps and Endos? They will supply on request. However it looks like you are not converting well with high reverse T3. And your TSH is still well above the recommended 1 or less we strive for here so that tells you that you are under medicated. Perhaps look at member SeasideSusie s posts as she is the resident vitamin/nutrients guru here on the forum. Any reason your ferritin is flagged as high?

[DJR1 in reply to Hidden]

Hello Rusty64 yes I have the list but as my GP insists I am within the reference range on his NHS tests I am normal and any symptoms are psychological. No referral to endo but anti depressants offered which I refused. Have looked at Private GP's as I would not need a referral but some have mixed reviews and wasn't sure. I know I could self treat with NDT and see how it works for me. Thank you for your reply

[DJR1 in reply to Hidden]

No idea about the ferritin which appears to be increasing by the month. Unless the Inflammation with the LP is causing it, I also have dreadful muscle stiffness and pain which I feel is related to high TSH and increase in antibodies.

[Hidden]

I wouldn't ignore the high ferritin - - go back to the GP and discuss your concerns there. In the meantime search "high ferritin" in the forum search engine and do some reading first (It may indicate inflammation). Here's a couple that came up:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

As you are not converting well that needs to be addressed regardless of treatment. Look at GF to reduce antibodies that inhibit conversion and consider adding selenium to your daily supplements also. And B12 should be increased to the high end of range - SeasideSuzie has lots of discussion on B12 in her posts and talks about how we should even be up at 900 for optimal results.

[DJR1 in reply to Hidden]

Thank you I read SeasideSusie's posts with great interest. I am supplementing all the vitamins and minerals and I have some selenium I am adding them all in slowly. I am also eliminating gluten.

I will change the GP practice with a bit of luck and will discuss high ferritin if the new GP accepts private testing and will look at the Medichecks results. I am not overly worried as I have inflammation with multisite LP and IBS Thank you for your advice

[Kell-E in reply to DJR1]

I don't convert well regardless of what vitamins and minerals I supplement. My ft3 to rt3 ratio is similar to yours. I started on NDT 4 weeks ago and I already feel better. My goal was to get endo to lower levo and raise cytomel. Out of the blue she offered NDT, which inherently has a 4:1 ratio.

[DJR1 in reply to Kell-E]

Thank you for your reply. That is encouraging and I am glad you are feeling better. I am going to trial NDT and see if that improves things. I am glad you have an endo that will prescribe an alternative to Levothyroxine, I suspect you are outside the UK? It gives me some reassurance that some Endocrinologists prescribe it. Hope the improvement continues.

[Kell-E in reply to DJR1]

I'm in the USA. It was weird, I mentioned NDT as an argument for a different ratio and she jumped on it...like she couldn't offer it, but since I asked about it...hmmm. Obviously she knows there may be something to it. I have been adding a 5mcg cytomel to my 2 grains of Nature-throid because I was falling asleep at 1pm (instead of 10 am). So, this is progress. I was previously on 104 mcg levo and 10 mcg cytomel. I have been on straight levo (150) and many combinations of levo/cytomel and never really felt completely well. Things in the US are not much better than in the UK. Cytomel and NDT are available, but almost no one will prescribe it. You almost have to find a naturopath. My endo is an anomaly locally. And forget about GPs, they are bad at everything.

[Pooley66]

There is also a LDN research trut website that will give you more information about this medication. It explains all relevant health conditions, why and how the product works and also how to obtain it. Hope it helps.