Rant.

[beaton]

For those that don't know me. I have been having problems with T4 , doctors and endocrinologists for the last ten years as I have extreme side affects. ( dizziness causing falls in the shower, can't walk in a straight line, very high blood pressure. )

Mid may saw GP for review after endo. visit in March. I thought he understood my situation. I had put in a yellow card, which he was aware of and he realised I knew what I was talking about. He was to arrange a consultation with the in house pharmacist, the best in Cornwall according to him.

So today, two weeks on, I get a call from a young female pharmacist, who although see had my notes in-front of her suggested I try T4 again. My answer was no, we've been there so many times. She spent ten minutes explaining how bad T3 is for me, every now and then coming back to, "well just try a small dose."

Two weeks to be told the same things I've been told over and over but they do not want to listen to me. Scream.

[Kitti1]

Hi beaton That's awful I so feel for you 😤 Time to self medicate ?

I've been hypo 30 years and spent too many years believing docs, your thyroids fine its your head/ weight/ diet 😠. I only found out about t3 in February which started my journal of discovery. I didn't even bother attempting to go down the doctor route. Partly because my trust for them has gone out if the window and partly because I thought it would take too long and I've wasted enough years.

After a lot of messing about ( which you can see in my previous posts ) I'm just getting going on t3 and finally beginning to feel better. S#d the docs you take control 👍

PS - well gel of you being in Cornwall 😀

[beaton in reply to Kitti1]

Thanks Kitti, Nice to know I'm not alone. x

[Kitti1 in reply to beaton]

I've just been having a quick look at some of your previous posts. Have you tried going it alone with t3, sourcing yourself ect ? From what I've read your felt a lot better on t3 only ? So why let them make you ill again on t4 ? Do you monitor your nutrients too ? Sorry only read a bit.

[beaton in reply to Kitti1]

Hi Kitti, Yes think it's time to go it alone and will stay on T3 only, it's just the cost that has held me back so far.

Yes I keep a check on nutrients, as a lifelong veggie I have done that anyway. Got the books got the internet and all the fiends at HU. So feeling that I'm not alone. xx

[Kitti1 in reply to beaton]

I can imagine the cost is a concern if your on t3 only. Based on what I paid for Greek t3, if your on say 50mgs a day I think it would cost roughly £25 a month. You'll probably save that on tripping about to doctors and endos 😂 And think of the lack of stress 👍

[beaton in reply to Kitti1]

True Kitti.

Mine you I have run out of endos. GP has suggested I don't see either of the last two. I called one a fire breathing dragon and the other a stupid narrow minded fool.

[Kitti1 in reply to beaton]

Flipping Nora So glad I didn't bother going down the doctors / endo route. I couldn't handle the stress ! I've not seen an endo since I was diagnosed at 18.

But the up side in a way to your persistence is the medical profession need us to be pestering them telling them that t4 is not the magic cure-all they think it is. The treatment we receive is shocking. And we shouldn't have to be paying for private tests and buying meds from abroad. But we need to be well now. Not in however many years time it dawns on them that they've got it wrong.

Don't get me wrong I'm still up for fighting it, well, when I'm finally fully medicated and have a functioning brain. But I'm certainly not going to waste any more years fighting them for them to medicate me properly. They've robbed me of being well for 30 years of my life and I'm fuming. So I have it my belly to fight them. But I need too be well first.

[Ann-Simpson in reply to Kitti1]

I wonder if you have read my post in relation to Beaton's post, and if you have any advice as to obtaining T3 from abroad. Ann Simpson

[Gingergirl1948 in reply to beaton]

Oh joy for humour 😍

[Ann-Simpson in reply to Kitti1]

Do you still buy T3 from Greece? If so, could you guide me please so that I can do the same Ann Simpson

[Ann-Simpson in reply to beaton]

did you used to takeT4 and T3? I think that I might be better of T3 alone. Does that ring any bells with you? AnnSimpson

[Ann-Simpson in reply to Kitti1]

I am very interested in your reply to Beaton's post. I have been withdrawn from T3 because that is what our local doctors are told to do and the consultant will not hear of either testing or prescribing it. She is also trying to lower my dose of T4 because she says that she doubts that I have a thyroid problem at all. Actually on the lower dose of T4 I do not notice any difference, so am not too unhappy about that but without the T3 I have been feeling very unwell ever since. Would it be possible that I need T3 and perhaps not the T4 or a smaller amount I was on 25mgs of T3. She has just lowered the T4 from 150mgs to 125mgs. Also had lots of private tests done which show that I do not convert well. Do i understand that you medicate yourself and source the ~T3 from abroad? Would be very interested for you to explain a little more, as I think that is the route I will have to do down. I find it quite incredible that they are so resistant to prescribing T3 and telling us how damaging it is even though we have been on it for years very happily.I know the cost issue, but I am not being given that argument.It is like banging my had against a brick wall, and although I could go and see another consultant, it is expensive and doesn't seem to to make any difference, as they all say the same thing. thank you Ann Simpson

[ITYFIALMCTT in reply to Ann-Simpson]

I know you've posted previously requesting a source of T3 but I think you might need to do that again, explaining what you've explained above, and request suppliers to be notified to you by PM. Ann-Simpson as more people are likely to see it than in this sub-thread.

You might need to learn about a couple of suppliers as it seems there are new problems with shortages and difficulties in obtaining them.

Good Luck

[Ann-Simpson in reply to ITYFIALMCTT]

thank you, and I seem to get in a muddle as to which thread we are on! Have posted Kittyl to see if she has any ideas. Meanwhile still perplexed. Ann Simpson

[beaton in reply to Ann-Simpson]

Ann do you have any blood results ?

My GP tends to dismiss T3 results but I have found if I ask for it to be checked while having bloods done, I do get a result. This is the only way I am managing to keep my T3, for now anyway.

[Ann-Simpson in reply to beaton]

yes, I posted all the results on the website the other day. Noone in this area is allowed T3 anymore, so I will have to source it from abroad. Now they are wondering if I need any T4 at all. My instinct is that maybe I don't but that I should be having T3. All so perplexing. thank you Ann Simpson

[Kitti1 in reply to Ann-Simpson]

Hi Ann

Yes I was just having a good read of your previous posts and all the replies.

For your endo to say you might not have a thyroid problem after all is just ridiculous. If you've been diagnosed and on levo to the tune of 150mg and t3 of 25mg then hypothyroidism is not a condition that fixes its self and just goes away. I'm afraid it just shows she really has no clue what she's on about. Shocking and worrying. I'm guessing it may be because your TSH is so suppressed but that is neither here nor there.

From reading your results - this is my personal opinion and am not medically trained. I'd say you definitely need t3.

Note - I had a bad night and I have cotton wool for brains today. I was going to suggest something but I think I need to check you results again. My memory is up the swany today. I'll come back to that later

I think you've answered your own question. Yep its time to take control and self medicated. Put up a separate post asking members to recommend a t3 supplier for you by personal message. I think most on here use either greek, Turkish of Mexican suppliers. I know from experience that there has been problems with the supply of Greek t3 but it does arrive eventually. And from I've read Mexican is more expensive, although I may be wrong.

I used a Greek supplier which including the fee to the bank to send the money abroad cost approx £63 for 150 tablets ( think I'm allowed to say that ) so not bad for 4-5 months supply for you.

Self medicating ius not as scary as it first seems. Just go low and slow, even though you have taken it before. You should re introduce it slowly. Do lots of reading on here four guidance and keepo posting how your feeling, how your getting on and test results. So the clever folk on here can continue to advise you.

Sorry if that waffles abit, I'm afraid I'm not as sharp as I was yesterday. Over used my spoons I think

[Ann-Simpson in reply to Kitti1]

thank you. Have now had a letter from the private consultant saying he would like me to stop taking the T4 for 14 days and re test after that to see what exactly is going on. I was put on T4 and other things over 20 years ago by a rather cavalier private Doctor called Barry Peatfield, and he was rather apt to let you have as much as you needed to make you feel better rather than doing it strictly. I have an instinct that I maybe do not need T4 or at any rate not much, but I think I do need T3. They reduced the T4 and I don't feel any different but have felt very unwell without the T3. I think I will have the DNA test done to see if it is a genetic thing and then they might listen more. To do a more open post if and when I am ready to buy it from abroad, I think I just post it on the Health unlocked website, is that right? I am getting in a muddle! thank you Ann Simpson

[Kitti1 in reply to Ann-Simpson]

This is just my opinion and I am not medically qualified.

Personally I think it is totally wrong to suggest you completely stop your thyroid meds. Your not over range for t4 and far from it on t3. I think your problem is your reverse t3. Reverse t3 is created from t4 and blocks receptor cells from receiving the useful and active t3. So a reduction in your T4 is good. But you need to replace that with t3.

That's probably why you've not felt any worse for reducing your levo. But I'm sure you'll feel terrible if you stop completely. But docs really don't care about this / understand it.

Its a lloonngg / long story ( see my posts ) but I ended up getting reduced from my already under medicated dose of 125mg to 100 recently. I cant tell you how ill I felt. Don't listen to them, do what feels right for you.

[beaton]

Yes Reallyfedup, I am just waiting for the GP to get back to me. The pharmy was suppose to be working out dosage but that seemed beyond her. Then I shall do it my way. x

[humanbean]

I have extreme side affects. ( dizziness causing falls in the shower, can't walk in a straight line, very high blood pressure. )

I had/have problems with balance, and I have problems walking in a straight line too, particularly in the dark. I've had bouts of dizziness too. If I was ever stopped by the police when driving and was asked to do sobriety tests I would fail, despite the fact I haven't drunk any alcohol for years.

I reduced the severity of my problems by giving up gluten. I hadn't expected it, it was a complete surprise that going gluten free would improve my balance. (It improved my temper too, and that was a surprise as well!) Having done some research I suspect I have gluten ataxia which damages the cerebellum, rather than coeliac disease which damages the gut. I was tested for coeliac some years ago and it came back negative.

The other things I've done that help me, apart from giving up gluten, are taking high dose vitamin B12. I take high dose methylcobalamin 4 times a week, and high dose adenosylcobalamin 3 times a week. My levels are always extremely high i.e. greater than 2000 ng/L. I keep my folate levels in the upper half of the reference range.

The only thing I've never had is very high blood pressure. It's been higher than I would like, but not severely so. Improving my nutrients and optimising my thyroid seems to have helped that.

[beaton]

Hi Humanbean, nice to hear from you.

Are you still taking T4 ?

I've been gluten free for some years now. I had know for a long time that bread did not agree with me but it was not until later I realised why. GP was reluctant to test so went my own way on that. B12 is in range but will look into upping it, can't hurt and might help. xx

[humanbean in reply to beaton]

No, I don't take T4 any more, just T3.