If I cannot get any more T3, what will happen to me? I suppose heading up to A&E might be useful. I really do not want to go to GP they just make me cry, as they do not listen, and seem to count me as unknowledgeable, and only have private test results.
If I do not have T3....: If I cannot get any more... - Thyroid UK
If I do not have T3....
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JudithW
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Did you not get any PMs to your last post? If not perhaps try again to ask people to PM you with suppliers?
I really hope you can get it. Can someone please help Judith? Can you contact your MP? I wish I could help you. Good luck.
Appyalison Thanks for concern I have had some good responses
If you have a prescription you can easily oder it from Germany. No idea what the price would be though. I can't imagine life without t3 so If I can help from here in Germany just yell.
With a prescription, it is very straightforward to have it dispensed by a UK pharmacist albeit costly; and currently by a German pharmacist at a cost of c30 Euros per 100 tablets. I suspect though, the OP doesn't have a prescription.
Yes UK price £800 for 100 tablets so 30 Euros is cheap.
Thanks RobinAnn, Unfortunately no prescription have written to Chief exec of Endo's will wait and see result and then I have a name of an Endocrinologist in Warwick who appears helpful
I think I have much to learn about the UK health system. It took me years to learn how to work the German system. The system is fairly good but the docs suck but I guess if I was back home in USA it could be worse. Good luck, having such a fight is hell when you're sick.
Not sure this truck would work in UK. But when I was first dx'd I was always given t4. Very toxic for me as my body wasn't converting. Finally I fled to Dr. Hertoghe's clinic. I had them give me t3 and write me a note. Now I just tell them I only take t3. Basically once I got one doc to prescribe it things went easier. Plus here I can easily change and jump around from doc to doc...sometimes their just idiots. I also always check where they went to Uni. Some Unis are worse then others and so are their doctors.
Hi RobinAnn,
I must admit I had been thinking about Dr Hertoghe's clinic, its in Belgium isn't it?
I like you had T4 first and got more symptoms, some of the first symptoms improved, however the more symptoms were worse, shortness of breath, difficulty swallowing, noises in the throat. Respiratory and cardiac tests showed nothing, could it be cellular said I? Oh no said the Dr!!!
I think it would need an NHS Doctor to prescribe first. My private Functional GP did prescribe T3 20mcg 1 a day, so he knows really little about taking T3. With all the recent furore going on from patients and in the House of Lords and the British Thyroid statement in October last year I am hopeful I might be a little more lucky in the not too distant future. When you have had an Endo try to tell me in an underhand way the amount of T3 produced in the body a day is 4-9mcg, I do not have much faith. He actually said The Thyroid gland produces 4-9mcg a day (he was comparing it to my 50mcg I was taking) that in itself is not untrue but he failed to mention the T4 converted to T3 in the thyroid gland and peripheral conversion so one ends up with about 30 mcg a day. Sounds much better against my 50.
next time you go to the GP take an advocate, when your thyroid is low you can't support yourself so you need help, then go back and fight your case - if they won't/can't give you t3 insist on an emergency appointment with an endo; alternatively go private altogether
Cazlock reckon your spot on about an advocate. I did insist on seeing an Endo last year, took my 24 hour urine test result 292 with ref range (800-+2500) he said initially he knew nothing about the test, and then later on that it probably was not very accurate. So it was dismissed out of Hand. I put a PALS in as he basically ignored a fully referenced letter I sent to him. His boss became involved and they said I did not need T3. I wrote to her twice requesting her clinical rationale as to why she felt I did not need it. Never heard anything back from February, so have contacted the chief executive. Waiting on a response.
I have the name of a private Endo in Warwick (I am in Yorkshire) and will wait and see what Chief Exec comes up with.
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Hi Debimmm
Following your (removed by Admin) I had a look but found it impossible to decide which to get - there were so many! Please can you post the name of the Thai one you use?
Many thanks,
DollyCon
Are you on T3 and T4, or just T3? If on both and you stop taking T3, your FT3 level will drop and your TSH will go up and you’ll become more hypo. You’ll probably have increased fatigue, gain weight, have lowered body temperature and possibly feel very cold, might be very sleepy, might have a lot of brain fog, bowels will slow down, heart might have palpations, etc. If on only T3 and you stop taking it, expect to become very hypo, to feel very ill, experience the above symptoms to even a higher extreme, plus more symptoms.
Yes that's what I thought hence my comment about A&E I am only on T3 I had too much Reverse T3, hence needing to cut out T4
Reverse T3 has an important role to play, and if necessary, is addressed by addressing what's causing it, not by cutting out T4.
Yes, plus what is the RT3 Ratio? There is always a cause to high RT3 or a bad RT3 Ratio, and that is what needs to be determined and addressed. Cutting out T4 is not a good solution as it won't address the problem.
I don't quite understand cutting out T4. What is your RT3 Ratio? It's calculated either with FT3 or with Total T3. Divide FT3 by RT3 (good results are 20 and up), or divide Total T3 by RT3 (good results are 10 and up). That is what's important to know.
There is always a cause to high RT3. Cutting out T4 won't get to the bottom and address the cause of your high RT3. High reverse T3 is commonly caused by Hashimoto's. Have you had both of your thyroid antibodies tested (TPO and TG)? Do you know if you have Hashimoto's? Other main causes of high RT3 are other illnesses or injuries and the resulting inflammation from such illnesses or injuries, low iron, and high cortisol. Lesser common causes are being on beta-blockers, diabetes, fatty liver or other liver disease, kidney problems, etc.
What are your FT3, FT4, TSH, TPO and TG results after cutting out T4?
At one point I had a bad RT3 Ratio calculated between FT3 and RT3. It was 17, which is bad. I was sick with a UTI, plus I have Hashimoto's and figured that between the two, that inflammation was possibly the cause of my bad RT3 Ratio. At that time, my FT3 and FT4 were still not quite optimal and I was experiencing some hypo symptoms. Once my Free's became optimal, my hypo symptoms went away. I retested my RT3 and calculated my RT3 Ratio and my ratio was 24, which is a good number. I have been on T4 and T3 for years. I keep my levels optimal and I have minimal symptoms. I have not retested RT3 for years. I'm sure my ratio has gone up and down. I still have Hashimoto's, and have had various other transient illnesses and injuries along the way that also cause inflammation.
Shooting star and Maisie Hi. Sorry this is long.
I had presented with Underactive Thyroid symptoms 2013 TSH and T4 were fine, was started on Thyroxine,went up to 100mcg my hoarse voice and tearfulness settled, tiredness improved. Other symptoms appeared, main ones were Shortness of breath, I used to walk from the disabled bay at work to my desk possibly about 100 yards and have to sit for 2-3 minutes before I could speak to anyone. (After I started T3 I could walk in saying good morning to everyone.) I also had noises in my throat and difficulty swallowing, amongst other things, when just on T4, and still feeling unwell.
I had a 24 hour urine Dec 2015 (Private)
T3 292 (800-2500)
T4 was 905 (550- 3160) (I would have thought this would have been higher)
T3:T4 ratio was 0.32 (0.50-2.00)
Private prescription for T3 Commenced Jan 2016
24 hour Urine April 2016
T3 1,600 (610-3380)
T4 4260(1030-8240)
T3:T4 Ratio 0.38 (0.50 -2.00) So the ratio is still not within Normal limits
Nov 2016 Serum
TSH < 0.005 (0.270 -4.200)
FT4 21.08(12.000-22.000)
FT3 7.4 (3.100-6.8.00)
rT3 33 (10.000-24.000)
rT3 ratio 14.6 (15.010-75.000)
I did a lot of reading around rT3 and it seemed to come up with, remove rT3 by removing T4. Reverse T3 is what T4 makes when there is too much T4, so rT3 is a way of getting rid of too much T4 as rt3 is inert. When the ratio of T3 and rT3 is wrong then T3 gets pushed out, there is not so much of it around either as you can see from the results. I read Paul Robinsons Recovering with T3 and followed that protocol. Discontinued T4.
I do my Temp BP and pulse regularly through the day, pre T3 and 1-2 hours post
Further serum results Aug 2017
TSH 0.094 (0.27- 4.20)
FT4 1.72 (12.00-22.00)
FT3 6.81 (3.10- 6.80)
rT3 <2.0 (10.00-24.00)
rT3 ratio ND
I think my rT3 was high because of stress. Stress is accumulative. I have lived alone for about 37 years now with little family support. Also moved around a lot. So all the normal knocks of life have been kept in me rather than talked out to family/friends. I think the final build up of stress was moving from Devon to Yorkshire, organising removals, buying a house and starting a new job basically all at the same time. A year after that I really started to have the continuous tiredness. I do however feel the stress levels had been building up for some time. Loosing weight via the Slimming one had been quite good, 2006 it all just was not happening.
Adrenalin Salivary Test (Private) February 2017 4 specimens showed
Sample 1 High Normal
Sample 2 Above normal
Sample 3 High Normal
Sample 4 Above normal 6.16 (0.83-3.86) this can indicate adrenal Hyperfunction Significantly elevated levels are considered a reliable indication of Cushings syndrome. GP performed a blood test. (One 5 second sample) this was within normal limits, so I must be alright (tongue in cheek)
How are you feeling now? Are you symptom free?
Have you had your thyroid antibodies tested, TPO and TG, to see if you have Hashmoto's?
Another question: were these your only tests? In December 2015, you were under medicated and not converting T4 into T3. Under medicated causes stress on the body. Were you on 100 mcg T4 here? Then you weren't tested again until April 2016. Here you were over medicated. Over medicated causes stress on the body, too. Your FT4 is at the very top of range and your FT3 is over range. Makes sense that you'd have a bad RT3 ratio. Were you on 100 mcg T4 here? Why not just lower your meds so that you free's were in the right level? This would have taken stress off your body and would have probably helped lower RT3 and would have given you better RT3 Ratio.
If straight T3 makes you feel great and you have no symptoms, that's what matters.
I have shown where I started and stopped Meds. Unfortunately it is difficult to make easy reading.
My symptoms are much improved, unfortunately before I started T3 I caught an infection and ended up in Hospital with stage 1 respiratory distress. I am sure the infection is part of a Syndrome as it is quite unusual and found in people with underactive Thyroid problems.
Tiredness, weight gain, Breathing problems, IBS type problems, ear pain slight, headache, slight nausea vertigo, and gritty lumps. But even so, I do feel better through all of that.
I did have the antibodies test right at the start, the tests I have written down are all the private test results.
2015 certainly not converting T4 to T3. I was on T4 from GP who got me to 100mcg and then said she could not go further and referred to Endo My blood tests TSH and T4 were all within normal limits. The Endo just looked at the results and said I was alright, even though I said look at me and not the computer so no help there.
I found the GP’s absolutely no help either in fact they make me cry as I was feeling so awful and they did not seem to listen.
2nd 24 hour urine Test April 2016 was after taking T3, The T4 is not at the top of the range it was about half way 4260 (1030- 8240)
The November 2016 I was still on T4 hence it being high normal, FT3 was slightly high. The rT3 was really high at 33. This is when I stopped T4.
I cannot see much point now in doing any Tests it would be just like the Doctors if I took notice of them. I record my observations, mark how I feel and titre the medication accordingly.
shawsAdministrator
Make an appointment to see your local MP. There is a Petition before the House of Lords at present.
thyroiduk.org.uk/tuk/newspa...
Thank you for that information shaws. I have tried to order yesterday and to pay via Western Union they blocked the payment and then cancelled it. 2 people have said they have ordered from the same place, one went via western no problem. What am I doing wrong. I said the money was a gift. They do not deal with TSB but I did a direct transfer to Western via from my account.
I'm sorry I don't know the answer as I'm unfamiliar with payments abroad.
With some banks it seems to work and others it doesn't. If you contact them you might be able to pay cash in a WU "office" - often in pawnbrokers or corner shops. But you have to get the correct details from the person at the other end
Thanks for the information Angel, it is something to bear in mind
JudithW, try not to be too worried. I've had to stop all thyroid replacement a few times for treatments, and I have no thyroid.
You'll feel more ill, and need to rest more, but it's a lot easier if you keep calm and positive. It's not the end of the world and you're very unlikely to need to go to A&E. Just hold tight and wait for your T3 to arrive.
Silver Avocado Thank you so much for your information. A lot of my concern last night was finding T3 to send for. I have now ordered from a couple of sites, doing direct Bank transfer (cost£10 the first one as it was sent in £) will try the other other one in Euro's.
I think my concern was that before I started T3 my breathing was very poor I used to walk from the disabled bay at work to my desk possibly about 100 yards and have to sit for 2-3 minutes before I could speak to anyone. After I started T3 I could walk in saying good morning to everyone.
Unfortunately since then I have acquired another odd disease, which has also affected my breathing, so just a tadge worried.
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