Referral to Charing Cross Hosp, Dr wants to withdraw T3

[mcooper]

Good Morning Folks. I am after some advice before attending an endo appointment at Charing Cross on 11 July.

I am on 75 mcg T3 daily and 10 mcg T3. ( T3 5mcg was originally prescribed by private endo a few years back, my GP then agreed to provide T3 on NHS for me and upped to 10mcg Aug 2018)

Back in Feb my GP advised the CCG want to review his patients taking T3 due to cost.

He himself is happy to continue but is bound by CCG restrictions. He said a referral would come through where I would be sent to see a specialist at Charing Cross. I expect this to be an exercise in finding an excuse to take T3 away.

I have also been taking Adrenavive II one morning and evening since Oct last year as advised by Dr P. (the aim was to move me to metavive but that is on hold as he has retired now so need to continue this bit of the puzzle with someone else)

Roll on to May this year, I had been having daily migraines. Suspect due to stress at home ( my 18 year old son having anxiety problems and also the HRT tablets I take being out stock (Elleste) since Feb and the replacements not suiting me so I stopped, and use progresterone cream only for now.

The GP I saw to get some sumatripan said she wanted to do some thyroid bloods as she saw my previous levels were showing TSH below range. She is a new GP so super enthusiastic. She also sent me to have an MRI scan for which I am waiting the results.

My blood results have come back as below.

I would appreciate any advice that I can use to argue my case to keep T3.

I felt dreadful on T4 only with horrendous aches and pains getting to the point where a walk in the park left me in agony. I had really bad issues with my gums and had to be sent to see a specialist. My life has become bearable since having T3. My migraines had improved till the last few months co inciding with stopping HRT and stress at home.

I do think menopause hasn't helped ( I am 51 ) I am worrying about the appointment next week . I have to go back and see my GP when two weeks after Charing X apt and I know they will try to stop my T3 and probably say its causing my migraines !

If this happens can I go back to the private endo who should have more leverage than the GP . If they want to change my medication they can take the levo away and up the t3 which would be my preference.

Otherwise I will have to go private but it is just so expensive and splitting 10mcg tablets is not easy.

Thank you for reading.

21 June 2019 Term Units Range

Serum FT3 5.5 pmol/L 3.10 - 6.80 pmol/L

Serum TSH 0.03 mlU/L 0.27- 4.20mlU/L

05 Oct 2018

Serum FT3 4.4 pmol/L 3.10-6.80 pmol/L

Serum TSH 0.16 mlU/L 0.27-4.20mlU/L

18 April 2018

Serum FT3 4.0 pmol/L 3.10-6.80 pmol/L

Serum TSH 0.29 mlU/L 0.27-4.20 mlU/L

11 Mar 2017

Serum FT3 4.4 pmol/L 3.10-6.80 pmol/L

Serum TSH 0.21 mlU/L 0.27 - 4.20mlU/L

[shaws]

I'm surprised you haven't yet had a response. There must have been a lot of posts earlier.

Re you believing you might get your T3 withdrawn, this is a link which may be informative.

thyroiduk.org.uk/tuk/campai...

Your TSH is fine - and NO (as the medical professionals tell us we've gone hypER.

It is the cost of T3 and many on this forum have sourced their own. We don't permit any info on the open forum but after your appointment you can put up a post asking for a private message to be sent to you.

Thyroiduk have been doing a lot of work to get T3 prescribed.

thyroiduk.org.uk/tuk/campai...

I'd also copy and paste your post onto a new questionand hopefully you'll get more responses.

It is a scary thing to think your T3 will be withdrawn.

Maybe you can also give your point of view on the following link:-

healthunlocked.com/thyroidu...

This was posted the other day:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

[mcooper in reply to shaws]

Morning Shaws, thank you so much for taking the time to reply and for the links.

[Hidden in reply to mcooper]

Please do NOT allow them to take your T3 away from you and DO tell your GP that if they do ,You will hold him responsible for the outcome.

When I had my last blood test at hospital in readiness for my Endo visit,the phlebotomist told me they tried to take hers away wth almost catastrophic results!!

When a phlebotomist on T3 tells you that ....you listen.

I was called to my surgery have a patient review........had the blood test at my local hospital and then went to the surgery for my interview.....It was for my thyroid.

I take T3 ,but it wasn't tested,so the whole issue of booking a blood test ,attending a hospital for it to be done and then attending the surgery for the results and interview was a complete waste of time !

Thankfully my T3 is prescribed by my Endo ,so he also monitors me every six months.

[mcooper in reply to Hidden]

Thank you Marfit for taking the time to respond and the info above. Before T3 I could hardly get out of bed in the morning, I will do everything in my power to keep T3 as life was very grim without it. Best of luck Moira

[Hidden in reply to mcooper]

I know how you must be feeling and I wish you all the best in getting and maintaining the dosage needed for you to feel well.

[shaws]

If you're not a member of Thyroiduk become a member - at least there might be, eventually, power in a large number of members - many of whom take T3 and are on this forum due to not improving on levo.

Also remember to see your GP and take some evidence along with you. Mind you he/she might have no knowledge of this condition.

Stick to your guns, i.e. you were already on levothyroxine (explain symptoms on it). State the relief when you switched to T3.

You can also say that you understand the cost to the NHS has risen by 6,000% and that's not the fault of the patients. How is it that Greece can sell T3 at around 2 euros for 30 tablets. T3 in the UK is astronomically high - what proof do the Pharma companies have to rip of the NHS and - worst of all - remove a life-giving hormone that makes us well and relieves our clinical symptoms.

Also state that the House of Lords is looking into the fact that T3 was withdrawn, without notice or explanation - it was down to cost.

Keep in mind that many doctors/endocrinologists seem to be unaware that some of us can NOT recover on T4 alone. Many patients who find a great benefit on T4/T3 (ask them why did they remove and also withdraw the very original NDT (T4.T3, T2, T1 and calcitonin)given to all hypothyroid patients and before that they died. Why was NDT withdrawn which was given since 1892 without blood tests but on clinical symptoms.

The BTA also made untrue statements about NDT in order to get this removed through False Statements. Copy and take to your meeting as evidence. the following link. Also ask every medical person you see if they've got hypothyroidism. If not - tell them they can in no way understand how a patient feels if levo isn't working for them. A blood test result doesn't inform how the patient feels - an assumption is made. They'd certainly not be on a forum looking for help if they felt well.

When NDT was removed, through untruthful statements, one of TUK's advisers wrote a Rebuttal to the BTA and despite three yearly requests for a response before his untimely death, they never did. You cannot argue with the truth.

drlowe.com/thyroidscience/C...

Is it because the majority of endocrinologists are male and don't have hypothyroidism, neither will they have any incling of disabling symptoms. Neither will they have to undergo problems that women can develop. They don't seem to be aware that for many patients T4 doesn't convert to sufficient T3 and it makes them far more unwell than before they were diagnosed (I confirm that myself). Many cannot recover or synthetic hormones of which levo is. Would a person not prefer a trial of 'natural thyroid replacement' instead of being unwell and be given intead, antidepressants, pain relief or any other combination of prescriptions to try to control symptoms which could be relieved with the addition of T3 to T4 or NDT or T3 alone (they can source elsewhere).

[mcooper in reply to shaws]

Thank you again for all the info, the support from people like you on this forum is of great comfort

[shaws in reply to mcooper]

My GP phoned re my results. He: 'you have to lower your dose because your TSH is too low, your T4 is too low and your T3 too high.

(Me) Yes doctor, I know my TSH will be very low because I take T3 only. My T4 will be low because I take none. (GP) - "but T3 converts to T4". (me) "I'm sorry doctor, T4 converts to T3 and its not the other way around"! TSH when on thyroid hormone replacements the aim is 1 or lower.

I don't think we would ever have believed that what is one of the top autoimmune diseases that they know little except look at the TSH and T4 and if TSH is in range and T4 they assume we're on a sufficient dose and do not increase to try to relieve our disabling symptoms. The fact also is that they do not know any clinical symptoms and rely upon the TSH alone to adjust dose.

Our Old Fashioned Doctors who trained previously were hounded when they treated patients as they were taught before the introduction of levo and blood tests.

[NWA6 in reply to shaws]

Holy f**kballs one just couldn’t make this stuff up 😂

[mcooper in reply to NWA6]

I know , it is a complete minefield.

[Hormone-hell in reply to NWA6]

My personal fave from a paramedic, "What is a woman of 25 doing on thyroid hormone", I mentioned that my auntie was on hormone at 14 and there's also something called congential hypothyroidism - his reply, "Well, you learn something new everyday!" 😂

[mcooper in reply to Hormone-hell]

It is unbelievable ! When I look back and see my old blood results, at the age of 33 I was trying for a second child. NHS didn't help as I had one child and paid 8000 for IVF which failed. If anyone had looked at my bloods at the time they would have realised I was becoming more hypo thyroid with each set of bloods they took. It was a further 14 years of feeling awful before a private doctor through work healthcare did the antibody test and then I was told I was hypo. I was encouraged to take Prozac /Amytriptaline etc. when levo didn't help. Through the help of this forum I managed to get a trial of T3 which does help make life bearable and now faced with another dilemma of trying to keep it. I know things could be a whole lot worse but if T3 helps me to hold body and soul together and hold down a job to pay my way in society why even consider taking it away..

[Hormone-hell in reply to mcooper]

That is disgusting!! I am glad you are feeling better, I really hope you can keep your T3, that is the least the doctors could do after giving you such poor treatment for years!

It is definitely counter productive what they are doing, they complain too many people are going to A&E and the doctors - well we wouldn't be there if we were treated properly!

[mcooper in reply to Hormone-hell]

Thanks Hormone Hell for your support , regards moira

[Hormone-hell in reply to mcooper]

No worries, best of luck xx

[mcooper in reply to shaws]

Thanks Shaws. I will be noting all your comments for my appointment on Thursday. Regards Moira

[shaws in reply to mcooper]

I am on T3 alone. I've been sourcing my own for sometime now as doctors want to restrict us in the UK to T4 only. I had been having severe palps early in my thyroid journey and cardiologist was puzzled he was considering putting an implant in my heart to actually record what was happening. Just at that time T3 was added to T4, and since then I had no palps for a number of years and eventually I went onto T3 only (sourced my own but now there seems to be a worldwide shortage it is more difficult now).

It is cruel to withdraw T3 if patient is responding well to it. I don't understand why, as medical practitioners they are unaware how to relieve symptoms or they seem unaware that's why we take thyroid hormone and adjust dose according to the TSH. They are also unaware that a TSH of 1 or lower is the aim, not 'somewhere within range - i.e. up to 5 - and they are content to give us extra presciptions for the remaining symptoms rather than hormones which suit us and removes symptoms.

[mcooper in reply to shaws]

Thanks Shaws, it is cruel to withdraw if patients are feeling well on T3, it takes years of feeling unwell and jumping through hoops to get it and then for it to be withdrawn because of cost is just not right. I am just hoping I manage to argue my case properly.

[shaws in reply to mcooper]

Thyroiduk met at the House of Lords and you can read about it below. Also write to your local MP. It is disgraceful that those who don't have a problem with the thyroid hormones can make rules/regulations without any including any suffering patients.

Just let some of these mainly male - become hypo and be refused the addition of T3 or NDT to enable them to feel well again and the suffering patients don't feel permanently unwell.

If you're not a member of TUK, you can join. It is relatively inexpensive for the sterling work the office does to try hard to persuade 'rules' to be changed to the benefit of the patient, not to the benefit of Big Pharma who get 'extra' monies due to patients' continuing symptoms.

thyroiduk.org.uk/tuk/campai...

[mcooper in reply to shaws]

Hi Shaws, many thanks for the info on the link above, that is very useful. Really appreciate all your help

[shaws in reply to mcooper]

I know precisely what we have to go through due to the 'modern' method of diagnosing/treating. We have had doctors in the past who treated us as they were taught as students, only to find as they got older they were pursued by the 'organisation' because they did as they were trained ie. look at patient first and foremost, i.e. was their temp low, did they have pain etc etc and were given a trial of NDT. If they improved it was gradually increased until they felt well again. No blood tests to interfere with doctors knowledge of clinical symptoms, except that doctors who followed their training lost their licences (maybe to persuade others to 'follow' new rules). One we know of appeared before the GMC several times because 'complaints' kept being sent to them. I think GMC received about 10,000 letters from grateful patients whose 'lives he saved' - their words and doctor was found to be doing nothing wrong. The strain must have been awful for him but he was stubborn and wouldn't give in but didn't lose his licence. What an indignity when healing patients as he was taught to - to appear before the GMC. One of his 'patients' did an mathematical calculation of his appearance and I think it (cannot remember actual number) 10,000 to 1.

[mcooper in reply to shaws]

It is a terrible indignity, in my case I still have consistently low basal temperatures, I know I could feel much better than I do but at the moment am happy to be able to get through each day with the help of T3. I was in the midst of being treated by Dr P who has retired do to ill health. Once I get past this latest drama I will continue with someone else when funds allow. It's a constant damage limitation exercise ie wouldn't be able to go and have a busy day sightseeing followed by a night out as I'd be wiped out..I know without it I can hardly stroll up to the local shop and back. Anyway I have made the decision that I will do my best on Thur and if I do end up having to buy T3 privately then I will. Thank you for all your support

[shaws in reply to mcooper]

I wish you well and maybe you should take a copy with you of the following. We shouldn't have to source our own medication but many of us are forced to do so i.e. so that we feel well again.

"What is the BTA and the BTF’s position as regards the withdrawal of L-T3 therapy?

The BTA and BTF believe that clinical need should come before financial considerations and they therefore do not support the practice of sudden withdrawal of L-T3 therapy. Patients established on L-T3 who continue to derive benefit from its use should continue to use it. However, patients with uncertain benefits should be considered for a switch to L-T4 and advice should be sought on how this can be safely done.

I have been on Liothyronine (L-T3) a long time. Is there any problem with switching me to Levothyroxine (L-T4)?

Your doctor should have made you aware of the risk to your thyroid stability. A change in treatment can unfortunately result in a significant instability in thyroid status, which can take some time to address.

Is there a resource to which I can refer with regard to the use of Liothyronine (L-T3)?

btf-thyroid.org/information...

[mcooper in reply to shaws]

Thanks you word it all so wonderfully, I will be printing and taking with me

[mcooper in reply to shaws]

Hi Shaws, I wanted to touch base with you following on from my appointment at Charing Cross last Thursday. I met with Professor Karim Meeran ( when searched on here it came us saying he is :the medico who signed the NHS edict on liothyronine) Anyway he was pleasant, answered byquestions, but to cut a long story short felt that I should not be on any medication whatsoever ie no levo and no T3 !! I had my mountains of paperwork showing antibodies which confirmed hashimotos etc, he said as they were only 143 for antibodies this was not a major concern. He has about 10 patients that are doing great after coming off everything. I explained my life story etc and said I would not want to ever go back to feeling how I was before. T3 allowed me to go to the office more than once a week and even though I don't feel brilliant, my energy gets depleted quickly , I am so much better than I was . He was surprised that I was prescribed Levo initially when my highest TSH was 4.65. When I was first given a trial of T3 5mcg in Sept 2016 my TSH was 0.027 ( range 0.27-4.2) so this surprised him further. I explained I had been given a diagnosis of Hashimotos , chronic fatigue and Fibromyalgia and there had been studies that T3 helped with these symptoms and I could confirm huge improvement on T3.We discussed my results from Dr Peatfield and he was dismissive of the Adrenal results , he didn't seem to know who Dr Peatfield was and assumed he was my GP ( if only)He said he would like my TSH to be at 1. I also told him about my consistenly low pulse always below 60 and temp always below 36 . He said that athletes often have slow pulse.. Anyway to cut a long story short - it was a long appointment , he sent me for a whole host of bloods that day, I did not know this was going to happen so when bloods were taken at 3pm I had taken my 75mcg levo and 10mcg t3 that morning at 6. He has arranged an appointment for a Dexa scan next month and I have to go back next Monday when fasting for more Thyroid tests and Lipids tests. After these and the bone scan he will see me in 4 months to discuss the way forward.

I know what he will be wanting to do . I have made the decision that I will do whatever I have to do to remain feeling reasonably well. Anything is better than going back to being the way I was.

Meantime here are the results of last Thursdays tests. He just mailed me a screen shot so don't have the ranges

Tsh 0.04

FT3 5.1

FT4 10.1

Vitamin D 55.8

I emailed him this morning asking if I could have the D102 test , or would he accept if I did privately , he replied to say further research has discounted the findings:There was a lot of interest in the gene sequences about 10 years ago, but when repeated, we find the same variance in D102 in normal people, and those who are well on T4 alone, so this test has no value, and has thus not been taken on by the NHS.

On a sidenote, he was able to pull up the results of an MRI scan that I had a week before arranged by my GP for a recent spate of migraines which had previously subsided

He was able to tell me all was ok but that I had "thickening sinuses"

Wonder if this is thyroid related?

Thank you for your continued patience and support. I would be grateful for your comments following my notes above and welcome any comments from you

any suggestions as to how I can get my TSH to 1 before next Monday ( if it was at 1 I might be left to continue with my medication)

Meantime I have started again 1 brazil nut every day - he said selenium in these helps with the conversion.

Regards

Moira

[shaws in reply to mcooper]

No 'modern day doctor or endocrinologist' I believe would be aware of Dr Peatfield. Dr P was another UK doctor, who went to USA to Broda Barnes Institute (I believe) to train specifically in dysfunctions of the thyroid gland. He, like many other doctors trained in that era on clinical symptoms alone and prescribed NDT with doses increased until patient felt well with no symptoms but who himself became the target in UK for not following the guidelines introduced along with levo with complete disregard of symptoms.

You state "Your Endo was surprised - that I was prescribed Levo initially when my highest TSH was 4.65". If he consulted in other European countries, I think he'd find that patients were diagnosed along with clinical symptoms.

Quote:-

0.4 mU/L to 4.0 mU/L is considered the reference range (there may be a slight variation depending on the laboratory), and people who have a normally functioning thyroid gland usually fall within this range.

If TSH measures > 4.0 mU/L, a second test (T4) is performed to verify the results. TSH > 4.0/mU/L with a low T4 level indicates hypothyroidism.

If your TSH is > 4.0 mU/L and your T4 level is normal, this may prompt your physician to test your serum anti-thyroid peroxidase (anti-TPO) antibodies. which is a risk factor for developing hypothyroidism. If you have these antibodies, your doctor will most likely perform and TSH test at least once per year." - this last sentence completely ignores the fact that the antibodies are attacking the thyroid gland.

endocrineweb.com/conditions...

How did it occur that despite my personal visits to doctors and specialists enquiring to know what was causing me to be so unwell that not one had any 'clue' of the root cause. I was told I had a digestive problem, given a prescription that caused more pain - I stopped. Another said I'd choke to death if I didn't have an operation for the 'web' in my throat - positively identified after a barium swallow.

I had neither a digestive problem nor a web. What I did have and what none of the specialists???? I saw could detect? - I was severely hypothyroid and TSH 100. Discharged three days earlier from A&E with 'probably viral with high cholesterol' and we know on this forum that a higher cholesterol can be due to being hypo rather than eating the wrong food so why don't doctors? but probably get a statin prescription instead.

This doctor is unaware that Fibro/CFS/ME were only 'named' about ten years after the introduction of the TSH and T4. I think this was due to not understanding clinical symptoms of hypo and relying completely upon a TSH result.

One of TUKs Advisers (deceased) was an Expert in all three conditions i.e. Fibro/ME/CFS and he stated it was due 'thyroid hormone resistance' i.e. T3 in higher doses would relieve symptoms as it didn't need to be converted'

I am not medically qualified but I'd get your blood test very early a.m as TSH drops throughout the day. I'd also get your Free T4 and Free T3 checked too. This is an extract from following link:-

"It is generally observed that TSH in early morning fasting states were higher than TSH levels measured later in the same day. In routine clinical practice not much importance is being given to the timing of the sample or the fasting/non-fasting status of the patient.

ncbi.nlm.nih.gov/pmc/articl...

I think I'd also get my own TSH, FT4 and FT3 tests (and earliest blood draw) which might be more accurate. This isn't a guarantee that the person you are consulting will be co-operative.

[mcooper in reply to shaws]

Thank you for taking the time to reply and for the links above regards moira