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.