Scottish peeps - T3 : I’m awaiting my latest lot... - Thyroid UK

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Scottish peeps - T3

Murphysmum profile image
25 Replies

I’m awaiting my latest lot of blood results but I am seriously thinking of requesting some T3 regardless.

Despite an ever increasing Levo dose, I still have aches and pains, headaches and muscle weakness. Also the reduction in my brain function is actually starting to scare me! It’s not just foggy it’s downright dark in there.

I’m outside Edinburgh and whilst I don’t want any names or sources, I just want to know if anyone north of the border is prescribed T3? It’s clearly becoming a major issue in Englandshire - do I bother asking or do I source privately?

TIA 🙂

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Murphysmum profile image
Murphysmum
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25 Replies
greygoose profile image
greygoose

If you're going to ask your doctor about it, I think you ought to know why you think you need it. Just saying you still have symptoms isn't really good enough. So, you need to see your results to be able to argue logically. Well, that's how I see it, anyway, given the current difficulty with getting it prescribed.

Ari3 profile image
Ari3 in reply to greygoose

Well in this case I would say -if your t3 levels will be in range possibly there is nothing u can do to proof gp about your situation because all what they care is just in range sadly unless it is under range. I do self medicate myself cause I know my gp don’t understand these things anyway but for u I suggest you to be strong and stick to your guts and go for it if u need it.

Murphysmum profile image
Murphysmum in reply to greygoose

I agree gg. I. Hoping my results will show a bit of an issue as was the case last time I was on this dose but who knows. My vits and mins aren’t up to scratch yet either but when I tried to get them to accept this arguement previously when asking for more bloods, they wouldn’t listen.

Not hopeful of getting T3 through the gp but just thought I’d see what the lay of the land was here at the moment. I think if I was south of the border I wouldn’t even have posted the question!

greygoose profile image
greygoose in reply to Murphysmum

Good luck. :)

Steni profile image
Steni

I really understand how you must be feeling. I felt exactly the same especially around the brain fog- I literally felt poisoned by the ever increasing Levo I was taking and despite quite a lot of discouraging advice to the contrary I went ahead and statutes in T3 - wow what a difference! I feel like my old self again. Maybe like me you should just follow your instincts and give it a try- if it doesn’t work you e lost nothing.

Murphysmum profile image
Murphysmum in reply to Steni

Thank you. I just feel like I’m so nearly back to normal but I can’t quite shake these last few symptoms. Some days they’re not so bad, others they’re terrible!

I’ve been on levo for about 15 years now with no issues until the last year and I just think T3 might be the thing I need. I just can’t seem to get that last final wee bit! I felt much better for around 3 weeks after my last increase and then symptoms returned again. I can’t just keep increasing.... can I?

Steni profile image
Steni in reply to Murphysmum

I don’t know if you can go on increasing - I just know I didn’t want to. I’ve decided not to be guided by results at the moment and just figure out the dosage based on how I feel.

Janemc52 profile image
Janemc52

I’m in Fife and no way would they prescribe it or even test it..I’ve give up . I’m now going to my first appt to see a functional Dr in Stirling.

Murphysmum profile image
Murphysmum in reply to Janemc52

Ooh. Let me know how you get on. I’ve toyed with this idea too

Janemc52 profile image
Janemc52 in reply to Murphysmum

My 1st appt is Beginning of November.ive tried NDT and it gave me AFib..was very scary...yes I’ll let you know.

Murphysmum profile image
Murphysmum

We need an “unlike” button!

Murphysmum profile image
Murphysmum

Ok, I have added my results as they’ve just come through.

I can post these elsewhere if needed but greygoose what do you think?

greygoose profile image
greygoose in reply to Murphysmum

You mean you've added them to the post above?

Well, you obviously have a conversion problem, because your FT4 is at the top of the range, but your FT3 is under mid-range.

And you have Hashi's - did you already know that? And, Hashi's people often have conversion problems.

But, your vit B12, folate and ferritin are all too low, so that might have something to do with your conversion problem, and would need supplementing before you started taking T3.

If you want more opinions on these results, it would be a good idea to put them in a new post, because this one will be far down the list by now. :)

Murphysmum profile image
Murphysmum in reply to greygoose

Thank you. I have done, along with a bit more info. I know I have hashis, in fact I knew long before my gp did!

I already supplement and these levels have come up compared to six months ago but still work to do.

I thought maybe there was a conversion problem and funnily enough, that’s kind of how I feel. Hard to describe but I feel well but just can’t seem to get that final

little bit.

Thanks - I’ll await replies on my other post 😉 😊

greygoose profile image
greygoose in reply to Murphysmum

You're welcome. :)

mistygrey profile image
mistygrey

I have it prescribed and I’m in Edinburgh :)

silverfox7 profile image
silverfox7

GG beat me to it but yes you needs to get B12, folate and ferritin higher and also getvyour vitamin D tested. Chances are that will be low as well. So get those optimal and that should make a different but it doesn't happen overnight. I reversed mine by doing this and got it armpit on but I don't have antibodies so I've no idea if that makes it harder. You may still need to add in a little T3 if that doesn't work but give it time and it could save you the extra money.

Murphysmum profile image
Murphysmum in reply to silverfox7

Thank you.

Vit D was 75 at the last count but that was about 8 months ago and I have been supplementing ever since. Plus nice summer and sunshine holiday so hoping it’s climbed a wee bit!🤞🏻

littlemo76 profile image
littlemo76

Im in Grampian and theyv banned it. They are also weening out those on b12 inj. Despite my high rt3,a recomendation from Dr Toft (Edinburgh endo) i still cant get it. According to NHS Gps and Endo, if im not better on levo its all in my head! They wont discuss nor test or look at any literature i give them. Ive been hypo for over 20yrs. They are useless!!

Murphysmum profile image
Murphysmum in reply to littlemo76

Oh brilliant.... 🙄

I was hoping if I could get dr toft to recommend it then I’d be laughing. Not so much then!

un_piacere profile image
un_piacere in reply to Murphysmum

I'm in Glasgow and went to see Dr Toft for the first time last week,who in a letter advised that my GP test my T3. They actually laughed at the idea of even testing it, saying that "we don't test for that" (when actually four years ago they did test my T3!). So if it turns out I do need it - and I'm having my blood tested privately just to check - I don't believe I stand a chance of being prescribed anything on the NHS.

Beastie profile image
Beastie

Hi, I'm in Aberdeen and my Dr and endo wouldn't entertain it... Worse, they told me that if I sourced it myself (which I did) and took it... They wouldn't monitor me on it.

JMo1 profile image
JMo1

My daughter gets T3 on NHS from GP in South Lanarkshire however it is a private consultant in Edinburgh who prescribes and monitors it (that was only after going through GP and South Lanarkshire complaints process). The Medical Director eventually found there was enough “objective evidence” to prove she remained symptomatic on T4 mono and has benefitted from the addition of T3. He strongly recommended that the GP prescribes. Unfortunately we are still paying to have it monitored as the NHS Endo refused to even see her as her bloodtest results were normal. The Ombudsman recently upheld my complaint that it was unreasonable for the NHS endocrinologist to refuse to see her in the first instance (Decision Report 201703051 is published on the SPSO website). I got an apology from the NHS Board but no solution so I have now requested that she is seen or monitored by the NHS. If they again refuse, I will continue to complain or go down the legal route. It has been a long journey but worth it as T3 changed my daughter’s life. It is well worth fighting for it, if you need it.

DippyDame profile image
DippyDame

I'm up north and T3 tests and prescriptions are but a dream! I had private tests and now self medicate....trouble now is lack of (private) supply.

Recently wrote a detailed letter to Jeane Freeman ... generated by frustration but more out of hope than expectation.

The whole debacle beggars belief

Do we have to chain ourselves to railings before "they" get the seriousness of this mess.....

Murphysmum profile image
Murphysmum in reply to DippyDame

I firmly believe we are storing up a nightmare for the already-at-breaking-point NHS.

One day someone somewhere will do one of these fancy parliamentary reviews and decide that the current phase of cuts and decisions was wrong.

One day...

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