Thyroid UK
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Total Joke!!

As you may know, my Mum has had various thyroid problems, the other week she had the Endocrine clinic & despite, yet again, saying my Mum is always totally exhausted, at times can't get out her bed & has many thyroid symtom s, he has said that "they are not Thyroid related as there levels are normal" & discharged her from the clinic!!! What hope does she have??

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Dare I suggest that you are her only hope? I've looked at her results, and it seems she's not converting very well. Get her some T3 and help her self-treat.

Has she had her vit D, vit B12, folate and ferritin tested lately? These could be low and causing her problems. It's very easy to get supplements to bring levels up.

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I guess we think alike. You posted while I was still typing. What are her chances for getting T3 though?

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That will depend on where you expect to get it?

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Hi cwill, It appears there have been problems with supplies. Even Greece's uni-pharma is requiring prescriptions and some have said they are still waiting for deliveries and they have paid for them.

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Oh, she'd have to buy it on-line, I would imagine.

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Yes, they where all tested bout 3/4 weeks ago. They told us they where all fine except her vitamin D was low. So she's started taking that.

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Yes, well, a doctor's idea of 'fine', isn't always the same as ours. If your mother could get hold of the results, that would be a good idea.

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I'll contact the docs on Monday to see what I can do.

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OK :)

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Mags, you may be your mother's only hope. I've read hundreds of posts like yours over the years and I watched my neighbor suffer needlessly becoming more and more obese and she was very careful about her diet. She died of heart failure this year and I feel very strongly that it was her thyroid not being treated properly. This is in the U.S. I would be in the same condition but I argued for getting NDT and then ordered my own T3 while it was available. Please don't let this happen to your mother. Get those "normal" results and post them and if they are not normal which I am almost certain of, take them to another doctor if you can. If that doesn't work ask for recommendations for obtaining what your mother needs.

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My Mum I would say is actually at the other end of the scale & extremely under weight. It's just hard seeing her exhausted every day, it's a constant struggle for her. Where do i buy T3 & what should I be looking for? I was in Spain recently & was able to buy Thyroxine over the counter for 3€ for 100 50mg tablets.

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This is her latest results......

04/05/17 - 50mg of Thyroxine

T3 - 1.1 (0.9 - 2.5) TSH 0.54 (0.35 - 5.00) T4 - 16.8 (9.0 - 21.0)

Advised results where normal, to continue on 50mg of Thyroxine

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'Normal' is not the same as 'optimal'. When a doctor says 'normal', all he means is 'in range'. He doesn't know any better. But, your mother's FT3 is much too low for her to be well. She is not converting the T4 she's taking, into T3, the active hormone that is needed by every single cell in the body. So, effectively, she is still hypo. She needs some T3 added to her levo. But, obviously, her doctor won't provide it! He can't see the problem. But, it can be bought on-line, if you are prepared to do that, and your mother prepared to try taking it.

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I don't mean to sound rude or cheeky, but do you have written evidence of this? Maybe if I took a print out to the GP then maybe she'll understand better. So, what's the name of the T3 that I need to buy?

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No, I don't personally. But, if that's what you want, then post a new question, asking for links to documents.

Having said that, doctors tend to be very anti-T3, because they don't understand it. You have to realise that doctors - even endos - are very badly educated in thyroid. They know very little about it, and tend not to want to know. They have been taught that levo is THE treatment for hypo, and the patient is healthy as long as their results are anywhere in the range. We, the patients, know better.

As for the name, it depends where you buy it. In Turkey, it is called Tiromel, in Mexico it's called Cynomel. I think those are the only two places you can buy it without prescription, these days.

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I totally trust what you are saying, Maybe I was just being naive thinking that if I had it in black n white, they might prescribe it.

When I asked the GP to test my mum's T3 she said that in her experience previous patients that she has tested, their T3 has came back "Normal" I was hoping it was available to buy over the counter in Spain?

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I don't think they have T3 at all in Spain. Shame because so many people go there on holiday.

Your mother's doctor doesn't understand the meaning of 'normal', nor the significance of being 'in range'. I don't doubt her patients' T3 came back 'in range', but where in the range? That's the question. Your mother's ranges is 0.9 - 2.5. So, both 0.9 and 2.5 are, technically, 'in range'. But, you'll feel much better with your FT3 up around 2.5, than you will with it down around 0.9. Your mother's FT3 is 'in range', but not high enough to make her well. But, doctors don't seem to be able to get their heads round that.

No, you aren't being naive, we've all been brought up to trust doctors, and believe that they know what they're doing. It comes as a brutal shock, sometimes, to realise they don't. This doctor might be one with an open mind, but they tend to be rather rare. Still, nothing ventured, nothing gained. There is research out there proving that patients taking T3 with their T4 do better than T3 only, but she is likely to just brush it off for whatever reason.

Plus, there is the fact that, these days, it's getting harder and harder to get T3 prescribed, because of the cost. GPs usually won't prescribe it, because they've been told not to, and the endo has discharged her, so you can't ask him.

But, many, many of us buy our own and self-treat with it. It's worth a try. :)

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Are you based in Glasgow? I could do with your expert advise and maybe you could convince the GP!!

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Sorry, I'm nearer Paris than Glasgow! :(

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It was worth a try!! 😞

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:D

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Just one more question, is there a test that can be done to see if you have problems converting T4 into T3?

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It's already been done. You test the FT4 and the FT3 at the same time, and compare them. Your mother's shows that she is not converting well because the FT3 is lower than the FT4 is their respective ranges.

Put another way, the FT4 is 65% of the range, and the FT3 is 14% of the range. They should either be about the same, or the FT3 % should be higher than the FT4 %.

We can already see that her conversion is not very good.

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Ahhh, I see. Everyday is a school day!! It must be fate that I put this post on today! I messaged my friend to see if her aunt still stayed in Turkey, but she says she has moved back home, however another relative is out there just now on holiday & is going to try the local chemist tomorrow to see if they can purchase T3!! He comes home on Wednesday, so perfect timing!!! Do you know how it comes & how much I should purchase & roughly how Mitch it costs??

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I can't remember how much it costs, but it comes in packets of 100 x 25 mcg. It's not very expensive, so get a couple of packets.

You're going to have to start her on a low dose - 1/4 of a tablet, so get a pill cutter - and increase very, very slowly, given her age. So, 100 tablets is going to last you quite a long time. :)

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Awe, that's good, I can't thank you enough for the amount of advice you have given me. It's been invaluable. I really appreciate it.

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Well, keep us up to date on how it goes, won't you. You're not on your own with this, we're all here to help you whenever you need us! :)

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You should have some luck with Turkish t3. My sister in law brought me some home last month.

Jo xx

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Mags, everything has been well documented regarding blood testing. This website has been established for a long time and been trying to support "victims" of the medical establishment who should go back to the dark ages because even then NDT was the responsible hormone of choice and more enlightened than they are now. stopthethyroidmadness.com/l...

health.howstuffworks.com/hu...

A recent summit regarding SIBO where the digestive tract is very compromised because of thyroid issues or digestive issues your mother seems to have, these bacteria can actually steal the nutrition from a person. I don't know if you can find help for that either. I have posted a few summaries from the summit if you click on my profile.

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I am not in UK. I am in Toronto. I see a gynecologist for my bio-idential HRT.........I sat in front of his desk, so sick, and barely functioning.......he did thyroid testing on me, and said what everyone on here is saying.........my levels were within what other doctors told me were normal........but he said you are showing me, sitting right here in front of that those results are not normal for you.........he started me on 15 mg desicated thyroid........I was drinking ginger ale 24/7 at the time I saw him.........I had been sick for a few months.......then I didn't need to drink the ginger ale......I was better but not normal........he raised the desicated thyroid to 30 a.m. and 30mg 8 hours later........everything is turning around..........I am just trying to encourage you to not stop until you get her the right help from the right people. All the best.

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It's just so frustrating when no one will listen to you!! Your story is really inspirational & I hope the same for my Mum. I'm glad your doing well now xx

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Greygoose was extremely helpful to me when I first came on here and was not doing well. She has great information and advice, in my opinion.

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Endocrinologists and doctors are so poorly trained in the detection of a dysfunction of the thyroid gland because they do not know any clinical symptoms - first and foremost. i.e. low pulse and temp and any of the following symptoms:-

thyroiduk.org.uk/tuk/about_...

The don't use their brains to suss out what is really causing many of the symptoms and even if diagnosed and prescribed, their doses are all too low thus symptoms continue and may even be worse and get new ones.

We've become 'numbers only' for diagnosing/treating. i.e. we only get diagnosed if the TSH reaches 10 in the UK, and if on levothyroxine the aim should be a TSH of 1, or lower, or suppressed but most of all the medical professionals harm their patients by insisting that 'anywhere' in range is sufficient - even the top which is about 5 - but we are not dealing with a machine but the human body and all of us need a different amount to relieve all symptoms and that is the professionals' job, but it is not forthcoming from many of those we have helped to get their Degree.

Lack of hormones can cause us more serious problems when the aim should be to relieve ALL symptoms - not just one or two and do as doctors used to before blood tests and levo were introduced. Prescribe sufficient NDT until symptoms were relieved as they have now withdrawn T3.

All of the sympathetic, knowledgeable doctors trained before the 50's/60's and have either retired or died and that's when hypo patients were diagnosed and given a trial of NDT (natural dessicated thyroid hormones) which were all that were available but used successfully since 1892. This was made from animals' glands and it might have been more beneficial for many than a synthetic T4.

Now it is the 'numbers game' it would seem to me.

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If she's very under weight, has she been fully evaluated for Coeliac.

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About 30 years ago, my Mum had a tumour removed from her gullet & some of her stomach removed, so she has always been under weight since this.

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If she has had stomach operation, then highly likely to have low vitamins, especially B12. If we have low B12 we can not use out Thyroid hormones

Have you got recent results for Vitamin D, folate, ferritin and B12

Symptoms of low B12 overlap thyroid symptoms.

b12deficiency.info/signs-an...

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I don't have the actual results, but the doc told me that her results where fine except her vitamin D was low.

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I would make sure to get the actual results.

A GP would say results OK if result was one point above bottom of range, or if it was one point below top of range.

The B12 range is extremely wide, typically 210-780 or thereabouts, though varies slightly from lab to lab. So if result was 215 or 760 a GP would say "fine", but when on thyroxine many if us seem to need it right up the top of the range, or even higher.

In many countries the bottom of the range is 500. Plenty of people, especially with thyroid issues experience B12 deficiency symptoms when results are well within range

Other B vitamins can also be out of balance, especially if vitamin D is low and thyroid combined

See this interesting link

drgominak.com/sleep/vitamin...

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If you look on the Thyroid Uk site you will find loads of useful info re Thyroid treatment plus print out the relevant info and show the GP. You can also point out that the site is recommended by NHS Choices for thyroid help.

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Hi Mags_23

I suggest, as already mentioned, you ask the receptionist at your surgery for a print out of all your recent results and then post on here.

Again, as previously mentioned, if the Vit B12 is low, it may be why T4 is not being converted so well to T3.

i agree, anything within the ranges, or even slightly out, the GP will usually say it's fine. My B12 is out of range (low) and my GP says 'it's fine'!!! My T3 is too low too, with T4 too high and I'm so tired, plus lots of other symptoms. Currently 'working' on my GP and have just ordered some B12 to self inject.

You might wish to also post your blood results on the Pernicious Anaemia forum, here healthunlocked.com/pasoc/posts for further advice re B12.

I wish you both the best of luck

JMN

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