Help what to take now

[Nellups]

As posted before I am on a T4 tablet from France, which is not available in the UK. I now have only 4 months left of my medication, I was supposed to have had an appointment with my Endo in September but never received one, he knows I am running out but seems to have now ‘washed his hands of me ‘ as can not get a replacement that I can take, lactose free and manatol free. My doctor can not believe I have just been left, she told me to go in to find out what is happening, which I did Friday. Have been told I am on the waiting list!!! So it doesn’t matter if I run out of my medication?

I have no Thyroid, last results were

TSH 0.43 mU/L (0.27 - 4.20)

Serum free T4. 27 pmol/L (12 - 22)

Serum free T3. 4.5 pmol/L (3.1 - 6.8)

Vit D 59 nmol/L

Serum B12. 926 ng/L (197 - 771) high ?

Serum folate. 5 ug/l. (3.9 - 26.8)

Doctors have suggested Teva liquid form is this any good?

They have also said they could do the paper work to get the tablets I’m on L-Hennings 130 per day, but can’t guarantee supply after Brexit 😞

Anyone got any advice please?

Don’t know whether to accept the Teva or not they won’t give me NDT. By the way can’t loose weight, have tinnitus and problem stomach acid etc so not the best of health at the moment either.

[greygoose]

Not surprised you can't lose weight. You're a terrible converter! Your FT3 is much too low. Has no-one commented on that? I think, in your place, I've be buying my own NDT, or T3. And not relying on the hand-outs of an unreliable endo. S** that for a lark!

Tinnitus is a difficult one, and I don't know anyone that's found a solution to that. It's not necessarily related to thyroid, could be a number of things, but so many people have it.

Stomach acid, on the other hand, is more easily controlled. I take it you have low stomach acid? Hence the terribly low nutrients? What you need is something to raise stomach acid, like HCL or pepsin, or whatever - apple cider vinager in water before meals. Or even just 1000 mg vit C before a meal.

But, you do need to do something about your B12, folate and vit D. Have you had your ferritin tested?

[Nellups in reply to greygoose]

Hi Greygoose

I did mention about my T3 convention on deaf ears ! The Endo first off said he was thinking of giving me T3 along with T4 then last time I saw him in March said he couldn’t get T4 without lactose in it and I’ll see you in 6 months then sent me away!

It’s my Doctor who is trying to sort it out but bless her, she doesn’t know much about it all. She’s been on top of getting bloods done T3 T4 and the rest except ferritin ?

Why is my B12 so high? A lot of my results have changed recently what do I need to do about B12 Vit D and folate?

As for the acid, I am now taking HCL with pepsin, was put on the dreaded Anti acids by consultante in March, and ended up with Helicobacter pylori was very ill, and since then to be honest not been 100%

Can you PM me where I can get T3 etc and how to take them?

Thank you

[greygoose in reply to Nellups]

I'm afraid I don't know why your B12 is high, if you haven't been supplementing.

You need to take some vit d to bring it up, but I can't tell you how much. Have a look at some of the responses given by SeasideSusie , she knows more about it than I do.

As for folate, try taking 400 mcg methylfolate to bring it up.

I can't tell you where to get T3, either. I don't have a source at the moment. You'll have to write another post asking people to PM you their trusted on-line sources. But, how to take it is easy. Reduce your levo by 25 mcg, and add in 1/4 tablet T3. Increase by 1/4 tablet T3 every two weeks until you reach one whole tablet, then hold for six weeks and retest.

[BadHare]

Try contacting PALS at the hospital you attend.

[Nellups in reply to BadHare]

What do they do?

[BadHare in reply to Nellups]

Every hospital has a PALS department Patient Advice & Liason Service) you can find it online. They will contact the endocrinology department with your complaint about them failing to send you an appointment & that they are not helpful with regard to ensuring you have suitable medication.

Neither were helpful with regard to meds in my case, though were effective I had to complain over appointments several times as the department I saw lost my notes twice & several sets of blood tests. I also wrote to the hospital management.

[helvella]

You could try a liquid levothyroxine such as Teva. They contain glycerol and some people find that affects their digestive systems.

I too like L-Thyroxin Henning (but luckily am OK on Actavis). Wish I knew an answer post-brexit but we will have to see what happens.

Maybe a GP would prescribe a suitable quantity as a private prescription and you could then buy it yourself? (Of course, it is terrible to have to make this suggestion and it should not be necessary.) By so doing, you could at least have a decent stockpile and some time to see what options you have if there are issues with supply.

By "suitable quantity" I mean in units of 100 tablets and enough to keep you going for at least a few months.

Therre are some German pharmacies which can supply L-Thyroxine Henning identified here:

thyroiduk.org.uk/tuk/treatm...

[endomad]

For the short term ask your GP for a private prescription to get 6-12 months of your levo either by post from french chemist or a quick visit to france. Lots of people holiday to get supplies in Europe especially Greece. By then your endo/gp and chemist should have got it sorted out, no reason why your gp cant stipulate the brand and shop around till you find a chemist who will order in.

If you are sensitive to fillers you may find same problem with T3. Unfortunately many find the NHS falls way short of decent thyroid care, usually self medicating to get well.

With regard to your tummy problems start making kefir or kombucha to get bacteria up, shop brought ones are not the same as home made. Google them and have a read see if it appeals to you.

[Batty1]

You have no thyroid .....your Endo is negligent !

[Nellups in reply to Batty1]

I agree it’s as though they hope I’ll just drop dead then won’t have to bother with me 😞

[endomad in reply to Nellups]

Not that simple! I have no thyroid, gp said once it was removed all would be well, he had no idea i would need any thyroid replacement!! i didnt have any meds for a few years, i was nearly in a coma, i will never trust another dr again.

[Batty1 in reply to endomad]

Oh my gosh ....you must of had some major in your face symptoms.