I was diagnosed hypothyroid almost 5 years ago. This was by a private consultant who I saw in desperation after years of being fobbed off by the GP I was with at the time. After my diagnosis, however, my GP played ball and took on my Levothyroxine prescription, the dosage etc based on what he advised.
(I was later additionally prescribed a tiny amount of T3 which the GP wouldn’t consider but that’s a different story.)
During the pandemic, I moved from England to Wales. I registered with a GP here and for the last two years they also took on my consultant’s advice. I do blood tests and see him every six months; the last one was June, after which he wrote to them as usual, copying me. However, when I asked for a repeat prescription in August, the receptionist at the surgery told me I needed to do a review. It transpired this involved a blood test followed by an appointment with the GP. I don’t know the full results of the blood test as they wouldn’t give me them. All I know is I got a text message from one of the doctors saying my TSH was too low, indicating I was “over replaced” and that I needed to book another blood test at the end of September and then have an appointment. My supply of Levothyroxine was then running out and I got into a horrible position where they wouldn’t prescribe more without me going through this process. In the end I called my consultant’s PA and she very kindly got a private prescription arranged to tide me over, though obviously at a cost.
I decided in the end to short-circuit their process and have made an appointment this coming week, simply to ask them if they’re going to go off my consultant’s prescription or not. I know via my consultant and from reading around that it’s not unusual for TSH to be low when on T4 and T3. But I haven’t the energy to get into a schizophrenic situation where the consultant is saying one thing but the doctor dispensing the pills is working off something else.
But what’s my position? Must my GP work off what my consultant says or not? If not, I’ll have to pay for all my thyroid meds myself which is galling. I feel like shit most of the time and can’t countenance the potential reduction of meds that I fear are on the cards if I don’t challenge my GP.
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WaystarRoyco
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I am sorry you are going through this. Yes, GP doesn’t have to prescribe anything they are not happy to do so. And, I think this is more important “I feel like shit most of the time”. This could suggest something is not working anyway.
You are most welcome. As we are often reminded on here, there are other options for self medicating and prescribing. I come across Roseway Labs mentioned a lot.
Take care. It’s a shit disease made even worse by the poor treatment.
The person prescribing the medication is legally responsible for it . therefore they have a right to monitor the bloods as part of that prescribing decision.
There's no way round this.. if you want NHS to fund the levo , you have to agree to them testing if they want to .. they are within their rights to refuse to continue prescribing if you repeatedly avoid , or refuse to allow, testing. And if the GP doesn't want to prescribe based on the blood test results , they don't have to ... regardlesss of what a private endo has recommended.
if the GP had referred you to an NHS endo , who then recommending they prescribe 'x' regardless of blood results, then that would be different ,the GP's back is covered , but when the recommendation/ diagnosis comes from the private sector , they do not have to prescribe levo unless they agree.
Re. the low TSH....Some GP's will allow this and will continue to prescribe if patient is well . but many others won't without a fight ... (it's easier if NHS endo is instructing)
Most NHS GP's will interpret a significantly below range / supressed TSH as a sign of overmedication and will wish to reduce the dose of levo they are prescribing. They don't like below range TSH , it makes them nervous ... even if they are aware that TSH is more likely to be low / supressed because T3 is being taken , that doesn't alter the fear about supressedTSH/ overmedication for most of them.
Consequences/ Harm are at the risk of the prescriber ... if they aren't personally happy to take the risk they don't have to prescribe.
When the initial diagnosis comes from the private sector ( usually because pre treatment blood result did not 'qualify' for an NHS diagnosis of hypothyroidism), then they are going to be even more nervous of being responsible for 'overmedicating' a patient. There is a lot of pressure on them to avoid overmedication.
In your situation you have to pick a horse....
Continue with GP and get free medication / testing,..... but the 'cost' is an annual fight to avoid reduced dose, dealing with the consequences when they occasionally do it anyway , sometimes allowing them to make you unwell to prove the point/ diagnosis , and then argue to get dose put back up , trying to build a relationship with a GP/practice who are comfortable letting you have it at a dose that is best for you etc etc.
Or pay heaps for the private prescription /testing/ consultation.... but have a bit more control/ autonomy .
Or buy Levo / T3 much more affordably without prescription, do cheap self testing once or twice a year ~ about £30 for TSH / fT4/ fT3 from Monitor y Health (which is ironically an NHS lab in Exeter) .... and have complete autonomy.
I would just add that the other possible route is to ask the GP for an NHS Endo referral and specify an Endo who is on the TUK list as being T3 friendly... though also an arduous route 😕
I think we need to put a call out to serenfach as I'm thinking Welsh thyroid treatment is even more of a minefield than in England?
Depends on where you are in Wales… I am in mid-Wales (Montgomeryshire) and my NHS endo is over the border in England. I take 25mcg Levothyroxine (T4) daily plus 50mcg Liothyronine (T3), my TSH is suppressed, my FT4 is below range but my FT3 is at the top of the range. My endo phones me once a year and signs me off on my prescription which my GP surgery provides. I have never had any trouble from the GPs and the only time the endo tried to take my T3 away from me due to costs, he failed because he had no jurisdiction in Wales. I can honestly say I have never had any problems getting T3 from my surgery.
I was referred to my old endo (sadly now retired) by my GP in 2004 when I was first diagnosed and I was given increasing doses of T4 which never worked. He agreed and put me on T3 in 2010 and literally gave me my life back. I even managed to get myself a BA (Hons) degree in History and Creative Writing at Glyndŵr University after the brain fog was dealt with at the age of 59! He continued to prescribe it for me until he retired in around 2014/15 and I have never dealt with the same endo more than once since. One tried to take my T3 away at the height of the price gauging, but failed because I was in Wales and he was in England.
Wow. That’s impressive. I’m so glad you’re well and had the capacity to do a degree. That sort of thing feels impossible to me right now, though I’d love to do creative writing at Cardiff. So inspiring to read your story. 🙏🏽
I think in the short term I’m going to stick with the consultant. But in the long term consider doing my own thing. I had to give up work because of ill health and don’t have an unlimited budget
I was on NHS levo and I started by self sourcing T3 and regained wellness (and knowledge thanks to this forum) along with my ability and anger enough to pursue an NHS prescription via their Endo.... I felt so aggrieved that they had kept me unwell for so many years and then I ended up footing the wellness bill!!
They have been supplying T3 and 4 for the last 10 months and after the initial battle with them trying to reduce my dose things seem to have settled and I feel I have done my bit to raise awareness that combi dosing is needed as my concern was that if most people concede and self source then they don't get the message! 😕
It helped deal with the anger too.... and my cash flow! As like you I don't work due to years of thyroid nonsense
Get yourself well and secure a source then give them hell to get it NHS prescribed🤗
It’s amazing you’re feeling better. What do you think helped in particular or was it a combination of things?
I totally understand your anger. That’s how I feel now: angry that the NHS didn’t pay attention in the beginning and now feeling punished for daring to take things somewhat into my own hands. It’s so wrong
The fact my fT3 had never been checked by the NHS so they had no idea that I didn't convert the storage hormone they supplied.... this fabulous site that taught me to read blood test results correctly and sort out my woeful vit and min levels which the NHS deem 'normal' or 'satisfactory'!😠
T3 brought me back from a fatigued early onset dementia state... things are getting better every day.... a full range of HRT also hits the spot having all bombed alongside everything else
You have found this site which is a huge step forward... so you are now already far more informed than most of the health professionals you will have to deal with and have a back up team on your side 🤗
It is so good to chat with others and feel the solidarity and strength of shared knowledge rather than battling alone, often against non believers, welcome aboard 🙃
While we have your attention Waystar .. please consider signing and SHARING this petition .. if you have already signed THANKYOU : ) healthunlocked.com/thyroidu...
I feel I have done my bit to raise awareness that combi dosing is needed as my concern was that if most people concede and self source then they don't get the message!
Exactly!
I was determined that NHS should acknowledge and prescribe
I don’t know the full results of the blood test as they wouldn’t give me them.
First step is to get copies of these results
See exactly what was tested
Far too often only TSH
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Do you have autoimmune thyroid disease
What vitamin supplements are you taking
How much levothyroxine and how much T3
Do you always get same brand levothyroxine at each prescription
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
I don’t know the full results of the blood test as they wouldn’t give me them.
I asked twice They said they’d call or email me. They didn’t. I have an online account with the practice. It doesn’t have blood test results on it. I will ask again.
Do you have autoimmune thyroid disease
I don’t have autoimmune thyroid disease. Antibodies have been tested a couple of times.
What vitamin supplements are you taking
Multivitamin, omega oil, vitamin C. Was taking vitamin D3 but advised levels too high and told to come off it in June.
How much levothyroxine and how much T3
Levothyroxine 125mcg four days a week; 100mcg the other three. 10mcg T3 taken in 2 doses of 5mcg at 8am and 4pm.
Do you always get same brand levothyroxine at each prescription
No. It changes pretty much every time I pick up a prescription.
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
How would I get this done?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
I definitely didn’t do this. My last tests (June) were done around midday and having taken that days meds as usual.
The results were:
TSH 0.02 (range 0.27 to 4.2)
FT3 4.4 (3.1 to 6.8)
FT4 17.7 (12.0 to 22.0)
Vit D 246 (50 to 200)
Folate 1525 (349 to 1474.4)
Ferritin 189 (13 to 150)
B12 256.0 (25.1 to 165.0)
Thanks for all the advice and links about testing. I think my next step is to get a DIY test. Is it okay to post here again when I’ve done that?
ALWAYS stop any supplements that contain biotin 5-7 days before any blood test as biotin can falsely affect test results
Medichecks and BH test BOTH TPO and TG antibodies
NHS only tests TG antibodies if TPO antibodies were high
brand of levothyroxine
Many members ask GP to specify brand levothyroxine on their prescription
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
WaystarRoyco, I suffered for 5 years with treatment by TSH. Then was undertreated with TEVA 100 mcgm not delivering correct dose. Found this site, got vitamins at right levels, got Accord levo and learned that T3 was way too low. Sourced some T3 privately and proved that improved my health.
Fessed up to GP, was lucky to get endo appt with endo team who understand T3, there’s a novelty😂 Then got T3 on NHS, so have been very lucky. My TSH has always been below range T3 and T4 always in range, so at a review with a locum doc 2 years ago I said I was prepared to sign a disclaimer to cover them against the nonsense of heart palps and osteoporosis supposedly caused by suppressed TSHThink they now have the message until some new untrained GPs come into the practice☹️
Was thrown off course this last year by Accord 100 mcgm also under delivering, T4 only 32% in range, usually 65%. So now on Vencamil, seem to be back on track.
Moral of story, teach yourself, monitor bloods regularly and b on guard for🤐 medics who know very little.😢
Go you! That’s fantastic and thanks for sharing your story. It’s definitely time for me to wise up and take my power back. I’ve felt so bad for so long and I really don’t want to feel worse.
Most GP practices in Wales do not have blood results etc. Mine only allows me to order repeat prescriptions, but sometimes not even that if they forgot to put a new prescription in.
I live in the Hywel Dda area. Do not go and see the main consultant who is supposed to be an Endo expert. With my research (ongoing) on to not testing T3, it looks like he is involved in the not testing protocol. Suffice to say I came out of the consultation ready to kill the next person I saw!
I cannot find any stats for Wales with how many prescriptions are for T3. They have put it on a list of unnecessary drugs. The 3 other drugs on the list have many alternatives, some of which can be bought over the counter.
If you dont get anywhere with the GP, have a look at NDT. If you ever want to see a consultant turn pale and gasping, tell him you take NDT.
My body, my choice does not give them much room for argument. We should not have to fight to feel well, especially when we are feeling pants, but that seems to be the way it is. Hopefully the GP will just do the right thing for you. Hug.
What a beautiful name serenfach ! Little star, right? I Googled endocrinologists here and they seem to specialise in obesity and diabetes. I didn’t get further than that. I’m sorry you had a poor experience. I agree, we should not have to fight to feel well. I’m not hopeful about the GP but I feel like I’ve got options and am not alone now.
Its a play on my real name. I did think of Ladybird which in Welsh is buwch goch gota. Translation is short red cow. I am not short or red though!
This forum saved my life. I was stuck on a low dose of Levo, thought I was going to die, knew nothing about the thyroid, and it has been such a help in finding a path to being able to carry on my daily life. The members are so knowledgeable and kind and supportive. Keep going, hope you feel better soon. Hug.
I’m in Cardiff & Vale NHS area. Was on Levothyroxine mono therapy with GP and was still symptomatic with low T3. Thanks to info on this forum found I had Hashimotos and was a poor converter with DIO1 & 2 deficiencies. GP (reluctantly) agreed referral to endocrinologist. Used Thyroid UK list and, last year paid privately to save time. Endocrinologist (who was also on NHS list) prescribed T3 on NHS and continued prescription for T3 (and T4) now provided by NHS GP. The system can work through following the informed advice on thus forum!
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GP reduced my levothyroxine dose
GP prescribing Liothyronine!!! 
NHS ENDOCRINOLOGIST HAS PRESCRIBED T3 BUT GP SURGERY WONT PRESCRIBE.. HELP PLEASE! 
Is my GP likely to agree to a trial of Levothyroxine with these results?
Will GP prescribe T3 at my end's recommendation? 
