Finally seen my consultant at Liverpool. They simply don't know why I've gone hyper three times . Found out they are not testing T3 because it isn't relevant yet were campaigning to prescribe.
Since they aren't testing or even following NICE guidance I hope CCG points this out.
My last bloods before seeing them I had just about enough T3 to register in the normal range. Low TSH and high T4.
After complaining formally about the inaccurate letter from the registrar stating everything was normal and I had various other inaccuracies Inc sisters and using MR several year's old as proof I didn't have pituitary problems.
The head of dept phoned me eventually ( over a week) and went off at several tangents which were basically clutching at straws Inc insulting me and This group because we understand our condition and are able to read and understand articles. I was told these things are not meant for laymen. She then couldn't get off the phone quick enough once she learnt I wasn't a layman and have relatives who are consultants. I also kept pointing out when she either repeated,went off topic or contradicted herself.
Her answer in the end : you were overmedicated ( no I went hyper on 120 mg with no warning ) contradicted herself by saying take 100mg one day and 125mg the next. She's dismissed this approach at the start of the conversation. Even tried to blame my fibro or anything else including the possibility of celiac disease. (No recently been reviewed and No had a repeat test but still have to follow the diet)
Incidentally changing medication; this was the approach my gp had considered and been told not to do by her. I went hyper again the moment the dose increased.
I'm looking for a new endo either NHS or private . I felt that the whole thing reeked of incompetence and having no idea what they were doing when a patient required something other than an increase of decrease in medication. I would advise avoiding referal to the royal liverpool and broadgreen trust for treatment.
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Well, the logical thing to do is surely run a full thyroid panel, to include the antibodies, as it does sound as though Hashimoto's might have reared it's ugly head.
If you get the vitamins and minerals analysis as well, we'll be able to see exactly what is going on.
Depending on where you live, many CCGs have stopped new T3 prescriptions being written and are actively encouraging those patients with a T3 prescription to switch back to Levothyroxine, with some patient's T3 prescriptions just stopped with little or no notice.
If you go into openprescribing - analyse - you can search by CCG and or surgery the levels of prescriptions being written for any medication currently available on the NHS.
It is a post code lottery so, simply changing doctors may not have the desired outcome.
Presumably you have Hashimoto’s and had a Hashi flare
Many endocrinologists are clueless about how to manage Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
What vitamin supplements are you currently taking?
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Endocrinologists still refuse to acknowledge anything apart from testing positive for coeliac as reason to avoid gluten
But gluten intolerance is extremely common with Hashimoto’s (and Graves )
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet often helps reduce symptoms, help gut heal and slowly lower TPO antibodies
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thanks I follow everything even avoiding coffee before and after dose. Also avoid soya. I'm on a gluten free diet on medical advice I've had tests and result wasn't clear but to be on the safe side , ibs with gluten intolerence. So diet but no support.
I've been amazed this dept is still in existence the ignorance they show repeatedly. My husband prior to his brain injury was of the opinion that if you presented with your leg hanging off they would decrease the thyroxine and not even notice the blood and leg.
I've now ordered a t shirt that says your first mistake was assuming .. I've been patronised so much
The are making a case ( another smoke screen to avoid giving me an answer) apparently to prescribe t3 but are not testing it. Any researcher worth their salt is going to say and where is your evidence. You don't believe it's necessary but want to prescribe it.
I feel they are well overdue a service review as to just how much of what they are doing is of benefit to patients.
Many GP’s and endocrinologists accept private test results
Obviously some don’t
First step is to get FULL Thyroid and vitamin testing
See what’s going on
Frequently improving low vitamin levels by self supplementing to bring to optimal levels will significantly improve conversion of Ft4 to Ft3
NHS only tests for and treats Vitamin deficiencies
They are not obligated to prescribe vitamins to bring to optimal levels
Eg Vitamin D - NHS obligated to treat if result is under 50nmol
But optimal result is over 75nmol
GP should advise patient to self supplement if vitamin D is over 50nmol but under 75nmol....but rarely do
Once all four vitamins are optimal...fine tuning levothyroxine to get optimal results
If cause of hypothyroidism is Hashimoto’s or Graves....frequently food intolerances are an issue
Often if gluten intolerant, conversion will remain poor even once vitamins are optimal and levothyroxine fine tuned
Then need to push for prescription of small dose of T3 alongside levothyroxine
Obviously post code lottery may still result in refusal
Then it’s up to each individual to decide on wether going down self medication route or to try to get private prescription
Often initial trial via private prescription can result in such positive transformation of health that NHS are forced into agreeing to fund ongoing T3 prescription
I was an active member of research gate, discussing reasearch with American , spanish, Japanese and German drs. I was being consulted on methodology and actually diagnosed a condition that had pediatric neurologist flummoxed . Once I put forward my reasoning they agreed and kicked themselves. So I don't think I'm a layman.
The problem is attitude. They do not expect people to be intelligent.
Recently I was told my husband was in Heart failure because he had fluid round his heart. The intention was I would sign a DNAR. ( no medical reason) he had covid. the Dr was shaken to the core because I asked for bp, cardiac function and what was his blood gases. Also what was his ventricular function. All normal. Then he's not in Heart failure. He is under a cardiologist so I will be contacting the team. Don't try this again as my answer is still no and is documented with our solicitor.
All to trick me to sign that DNAR so they could withdraw treatment. That was the third time I was asked I'm still waiting for an explanation.
Had them tested eventually. Suggested that it might b useful to see if they are increased recently. Answer if you have antibodies your thyroid dead. Total nonsense it doesn't mean that at all. (the diagnosing consultant said it meant my body was attacking what I produced and my thyroid couldn't keep pace so was dying off not dead. Only way to prove it was dead would b other types of test)
Oh, goodness! That's not right, either! The TPO/Tg antibodies don't attack anything. If they're high they mean you have Hashi's. Here's a brief run-down of how Hashi's works:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can do for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
There are no tests to see if your thyroid is dead. The only way would be to come off thyroid hormone replacement completely for six weeks and see if your thyroid produces any hormone. But, of course, that could kill you!
So, your antibodies were high? If so, you have Hashi's, and no point in retesting them because antibodies fluctuate, but Hashi's doesn't go away.
And, if you have Hashi's, that's why you suddenly 'went hyper'! Absolutely no mystery there.
Thanks for that. I don’t understand how to interpret it though if I am looking for how much T3 has been prescribed here? 😱. There are over 41,000 entries!
The CCG relates to the where the prescription is issued, i.e. the GP, and not the hospital location. There are 9 separate CCGs that form the pan-Mersey CCG so it could be argued that a more accurate reflection would be to combine the figures for all of them. Possibly some patients from Cheshire too?
I've fed back to pals that this application was raised with me. Totally unnecessary. But did add that as having been a member of an international research forum their application would go nowhere. By not testing and taking the attitude it didn't matter they had no data to support the application. (I was also seconded at one point to the commissioners.) I dropped her right in it as she not only failed to address the complaint but failed to demonstrate logical clinical reasoning with her conversation, contradicting herself and repetition Inc rejecting the treatment plan she first mentioned and then advising to follow it. Which incidentally the gp suggested in the first place and she rejected.
Ive suggested a full service review Inc an anyomous patient survey sent to patient homes re their opinion of service and treatment. (that was part of my role)
It's not the first service that I've ended up having reviewed due to poor attitude and knowledge.
That sounds odd. I've used the Royal for years and generally found them to be good. They've always tested my T3, even before prescribing liothyronine. I also thought the head of department was a man so you may have spoken to someone else. There are a couple of people I don't like and ask to see someone other than them when I turn up. The receptionists have always been very accommodating.
At an appointment last year I asked about the T3 prescribing. Apparently it's still allowed but they have to make a very strong case for it. It's nation-wide, not specific to the hospital, but sounds as though their hands are tied despite the guidelines.
Liverpool CCG prescribing figures won't necessarily reflect the hospital recommendations as not all patients (e.g. me) are in that area.
It's not nationwide. I've checked with nice. It started this January. I was told it was the head of the lab that would only allow urgent requests. The head is now female. It used to be Dr vora and his covey of sexist registrars apart from one or two who I used to see. One who did my diagnosis. It's now in with the diabetic center and you are immediately aware that's what matters. No info on thyroid. All on diabetes. Nobody is interested the nursing staff have gone. Even the reception wasn't sure clinic was on. Felt very much unwelcome. Switch board had a job putting me through when gp was told I needed to be seen urgently and I was classed as routine. The letter even stated in the first sentence as per our conversation urgent appointment.
I'm going to discuss this with gp and look at going elsewhere. They respect my opinion as I used to analyse services for commissioners and if this is result of reorganisation it needs a service review.
Last one I recommended everything in my report was agreed and on further review changed.
I've asked at least 3 different endos at the Royal over the last couple of years and all of them have said that, while they can prescribe liothyronine to new patients, they're challenged on it and have to jump through hoops to do so. One was very clearly frustrated about the liothyronine constraints. Prior to that, they weren't allowed to prescribe it to any new patients. These were consistent across NHS England. Of course, you might get a different outcome if you go private and pay for your medication.
I've been going to the endo clinic at the Royal for 7 - 8 years and never come across the head of department you've mentioned (you might want to redact the name as I don't think we're allowed to mention specific people). Looking him up, he seems to be part of a specialist team rather than the general endos. I've also never experienced any of them being sexist. One of the ones I've asked not to see is a diabetes man so the appointment I had with him wasn't productive. Generally, I've found them to be fine.
Michael Gove's wife Sarah Vine is hypothyroid and is prescribed NDT lucky her! I actually tweeted to her about it and she ignored me just like Matt Hancock ignored my MP and got one of his minions to answer the letter about it instead.
If you have an underactive thyroid you can't "go hyper". You can be overmedicated and you can have temporarily high thyroid hormones caused by destruction of thyroid tissue by autoimmune thyroid disease. If that is the case, it wil gradually correct itself and you can just reduce your dose for a few weeks until you feel better without seeing doctor. Any endo who doesn't know that is poorly educated. If you were taking B vitamins containing biotin in the week before the blood test, the results will be inaccurate. What were your actual results?
I've got the letter upstairs Tsh was highlighted by lab as low
T3 was 0.1 off low but interpreted as normal
T4 was 19.4
This was test results on referral in January. Dose 100mg levo if I took even slightly more I was getting palpitations and chest pains
These results were interpreted as normal by hospital.
From Christmas to March I lost loads of weight. I went from 86 .5to 61kg again hospital couldn't explain.
I reduced from 120 at Christmas. I'd reduced from 150 in Aug as it was showing signs of being over.
Gp has kept a close eye on it as I get very ill. Suddenly goes up dramatically without warning 26, 28 points above normal can happen literally over a couple of hours. Only my regular gp was in they were about to call an ambulance as a heart attack was suspected.
Gp sent me for a new test last week. This last one was 3rd time in 18 months.
Results with ranges would be more useful and easier to interpret. Low T3 can cause palpitations and adrenaline rushes as the body tries to compensate (as can low iron). GP should refer you to cardiology if you have had an abnormal ECG (if ECG normal very unlikely there is anything to worry about). With low T3 and in range FT4 you are not hyper or overmedicated but probably need either some T3 added to your levo (fat chance in the UK) or better vitamin and mineral levels to improve T4 to T3 conversion. Some people need over range FT4 in order to make enough T3. TSH is not a reliable guide to thyroid status once you are on meds. If your levels vary wildly it sounds like Hashis - what were your TPO and TG antibodies? Best to follow strictly gluten free diet and keep TSH as low as possible (which upsets GPs but tends to reduce attacks). Why not just buy your own NDT or T3?
The TSH is a pituitary gland hormone not a thyroid hormone it is the T4 and T3 that counts. For example my TSH is 0.38 at the moment and I feel well but when it was 0.80 I felt ill. We are all different and you cannot just go by the TSH. I was actually admitted to hospital with a suspected heart attack last year and it was infact a thyroid storm and there was nothing wrong with my heart. You can read my story on my profile page if you are interested.
I mentioned this possibility as I'm hashi. Apparently no such thing unless it's over 50! I don't know who trained these people but I was nearly following your route. 2nd episode I was sent for a heart scan. I had nil calcium deposits which they found hard to believe so had rechecked the results. It was 24 points above normal but calmed down very quickly. This time 10 weeks later no improvement but mixed hypo symptoms and hyper symptoms .
I had a thyroid storm last year and I think my multinodular goitre must have dumped too much thyroxine into my blood stream. I was at my friends wedding and I might have had too many coffees and a couple of glasses of champagne which added to it. I now have 1 coffee a day and only a glass of wine occasionally. It was a scary experience and the consultant in A & E wrongly presumed I was having a heart attack. He admitted to me he knew nothing about thyroid disease and to be honest the only doctor I have seen who did know about thyroid disease was Dr Gordon Skinner. I only saw him once before his death but he actually examined me and looked for physical symptoms whereas most doctors only go by blood results.
It's not called hashimotos in the UK - it's autoimmune thyroid disease - they probably thought you meant Graves - and what over 50? TSH? FT4? TPO antibodies?
Clinic Dr wanted to diagnose me as hyper didn't believe me when I said I was hypo and had been for 15yrs. Diagnosed in same clinic couldn't be bothered having past notes sent for it even reading gp letter. This was in front of a medical stuff who was aghast
I think if it didn't involve a simple lab says increase/ decrease she didn't know her proverbial. Her boss treated me to how they were making a case to prescribe T3( how they were going to without the basic data of proving they had patients with T3 problems as they refused to test amazed me) having designed research and been on an international research forum for a number of years I managed not to laugh. Beside it had no relevance to my care of resolving my issue. I'm beginning to think end is where the useless drs who are a bit nerdy end up.
If they were nerds, they'd have a clue about biochemistry and how the endocrine system works. It's more likely to be the ones who were impossible to work with but had a lot of years service so couldn't be got rid of - the sort of people who get booted into management when they can't do the actual job.
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