About to try NDT, switching from Levo, any advice welcome

After asking nearly every GP in our practice if I could be referred to an Endocrinologist and being refused, one GP (the Senior Partner) finally gave in a few weeks back. I know at our surgery they have a morning meeting at 10am and I'm sure I must be on their agenda sometimes 'Oh by the way, Mrs Howson asked again if she could be referred to an Endo'

A few weeks back I had an incident early morning requiring an ambulance, husband turned round on his journey to work and came home for me. Anyway without going into too much detail on that one, the ambulance crew were fantastic, did ECG and stayed for 1/2 hour monitoring my BP, then advised seeing GP for a review of my BP (I'm taking Indapamide 2.5mg for BP as I was having high spikes earlier in the year)

Managed to get an appointment with a GP I'm not fond of (another one who s dismissive of thyroid symptoms) but she was the duty doctor that day. So went along with my husband. Once in with her, explained what had gone on in the morning. I was determined not to mention thyroid but she looked at her screen and quoted my last results as 'normal' (as they always do) So at that point, I did ask could I be referred to an Endocrinologist. The reply came:-

" We don't need to refer you to an Endocrinologist, we deal with Hypothyroidism here at the surgery"

I replied " But I still have hypothyroid symptoms"

Without questioning which symptoms, she said

" yes we do find some people still have symptoms despite having medication"

I was speechless, so was my husband and we left the surgery and he just muttered to me on the way out that we'd go private and what an arrogant b***h she was.

After a couple of weeks I had the appointment with the Senior partner to ask about something else, had been experiencing some anxiety. Decided to pop the Endo question again and to my amazement he said yes. But he looked at me and said he was only doing it because he felt I was going to keep asking. I said yes, he was right and smiled. Waiting list 3 months, so I asked to go private. Yes, got an appointment for 6th September at local hospital. Couldn't find any information on the Endo he'd got the appointment with, so just told the surgery I would see someone of my choice.

A very kind HU member responded to my post on here and recommended someone in London, who I saw on 1st September. Had a good appointment, tried to go with an open mind, not tunnel vision wanting NDT or T3 etc. The outcome was a recommendation for 2 avenues of treatment (think I have explained in a previous post) which were low dose hormonal (HRT) patches (much to my surprise) and / or NDT and he usually prescribes Erfa. I questioned the idea of the patches and he said some of my symptoms are menopause related. I'm 61 and had last period 9 years ago so this did come as rather a surprise to me. But I mentioned a previous bad experience with a mirena coil some years ago but he said this would be a 3 month trial. I also had blood test while I was there. Results and report came via email within 48 hours.

So I thought long and hard about the patches and did some research on them and decided I just don't want to use them. The patient leaflet states its inadvisable to use them if you have a 1st degree relative who has had breast cancer and one of my 2 sisters had breast cancer (oestrogen related) 4 years ago. Also the patches he prescribed seem to be known for raising BP - so don't need that.

So I emailed the Endo and explained my feelings and asked could I try the NDT first, after all he had given me the option for either / or. He agreed and spoke to his pharmacist last week and NDT is in the post, should arrive tomorrow. He is sending 30mg tablets which I believe are 1/2 grain and recommended taking 2 per day. The reason I wanted to try the NDT is because blood test result showed

TSH 3.59 (0.27 - 4.20)

Free T4 21.3 (12 - 22)

Free T3 3.4 (3.1 - 6.8)

Also tested DHEA and recommended a supplement for that, I'm thinking more about that one. I've had vits and mins tested privately and all are OK.

So I felt my T3 is pretty low and T4 a bit high, so probably not much conversion going on and hoping the T3 within the NDT may help, though I'm aware the T3 might come a bit like a lightening bolt.

So I'm excited but very nervous at the same time. Aware that NDT doesn't suit everyone, but must try something to improve my health.

Currently taking 75mcg Levo and have been for sometime. Tried raising to 100mcg earlier this year (and a couple of years ago) but on both occasions ended up with undesirable symptoms - tightness across the chest and typical anxiety symptoms. These went away once the dose was back to 75mcg.

Endo has suggested dropping Levo one day and starting NDT the next. So assuming it arrives before Friday, I thought I would start Friday as I have a day off work and that would allow Friday / Saturday / Sunday to see what might happen (you can tell I'm nervous)

So just wondering if others have experience with Erfa (or other NDT) and how they started / how much for starting dose / when to titrate up etc.

Many thanks for any help.

Georgina

Bedfordshire UK

6 Replies

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  • My experience with T3 was excellent. There was no 'T3 might come a bit like a lightening bolt'. It calmed my whole body and I've not had one palpitation since. On T4 I was in and out of the A&E, and had quite a few trips by ambulance due to levothyroxine. Because I had a very high TSH when finally diagnosed my heart was playing up then for the first time ever.

    Usually if heart plays up it can be due to too little thyroid hormone or too much. If too much you just reduce the dose.

    I am sure you will find a big benefit on your new regime.

    When changing from levo to NDT, you can just switch straight over although some might prefer a slightly lower dose. You take temp/pulse several times a day before beginning so you have a starting point. Every two weeks you can increase by 1/4 or 1/2 tablet (I prefer 1/4) until your symptoms resolve. If pulse and/or temp increases a bit too much drop to the previous dose .

    I hope it works for you and I don't know why doctors have so little knowledge about optimum treatment.

  • Hi Shaws, thanks so much for both your very quick replies. I have a day off work today and was thinking I would just gather any more information before the parcel arrives. I was in Paul Robinson's FB group 'Recovering with T3' for a couple of months as it was my intention to maybe switch to T3 from Levo. I even bought some T3 which I still have, but in view of the Endo appointment and advice given, thought I would concentrate on one avenue of treatment first. But Paul Robinson did say to me that perhaps my previous episodes of high heart rate (had some many years ago which appeared to diminish after menopause but have had a few short bouts recently) may be due to lack of T3 or under medication generally. Also while I was in that group, I did start taking temperature early morning and BP to get a baseline. Maybe I will start that again for a few days at least.

    I guess its just a step into the unknown. I'm 61 and was hoping to get back into good health. I am quite a bit overweight and not under any illusion that the weight will drop off after switching, but hoping that if NDT helps improve my energy levels, then I will feel more inclined to exercise which in turn will then help with weight loss. The Endo did say to hold on to the patches and said 'I think you will still need them later', but I'm still very reluctant to use those.

    I did wonder about starting at half the dose he suggested as you mentioned.

    Thanks so much for your help, this group is so useful and supportive. I will read the links you kindly sent.

  • 30mg of NDT is roughly equal to 50mcg levo (in its effect). This might be helpful.

    web.archive.org/web/2010103...

    web.archive.org/web/2010112...

    Dr L always prescribed one daily dose of NDT or T3.

  • Another helpful link from Dr L. plus a post I did a few weeks ago and I think you'll be heartened by it but don't expect anything to be instant. We have to work up gradually to an optimum:-

    web.archive.org/web/2010103...

    healthunlocked.com/thyroidu...

  • Hi Georgina

    I need to find an endocrinologist who prescribes natural thyroid.

    Would you mind giving me the name of your endocrinologist.

    My current private endo will not prescribe .

    Thank you

  • Hi Twinstoo, yes of course, I will send you a private message.

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