Be prepared… A rant it’s on its way to you. Sorry 🙊
I finally managed to see a GP and “discuss” my blood test results.
I went in armed with the following print outs
- Last 4TSH results spanning over a year (all at least 3 months apart)
- Hypothyroidism symptoms checklist
- NICE guidelines on Subclinical Hypo (which clearly state I should be given a 6 mo Levo trial IF I have out of range TSH at least twice tested 3 months apart)
- NICE guidelines if trying to conceive (clearly stating Levo trial and wait to conceive until stabilised)
- NICE dosing guidelines ( to make it easier and I’ve noted down weight and advised dose calculation)
All of the above were with pink highlighter to draw attention to the relevant short paragraphs.
I explained ALL of my symptoms (basically… 70% of the checklist!) and how I cannot physically function and that I am struggling to work and that I am self employed and if I do t work… there’s no one paying the mortgage, paying the bills or buying groceries plus the real fact that I don’t feel a fully functioning human.
And I was met with (after a bit of back and forth):
GP: I don’t care what you tell me or show me…
You’re not walking out of here with a Levo prescription.
Me: Why?
GP: your TSH it’s low and your FT4 is in range.
Let’s re-test your antibodies as that will tell me if your Thyroid will fail in the future but not now, so we can address it then.
Me: 🤦🏼♀️😳🤔🤦🏼♀️🤦🏼♀️🤦🏼♀️
That’s not what the antibodies are actually telling you.
Also, that’s not what the NICE guidelines say to do.
I am not a functioning human, I cannot even get out of bed.
I was also getting my health in a good state so I could try to conceive.. for which the guidelines again state trial of Levo is way forward.
If you decide to ignore, this may mean I may have to delay trying to conceive for months and Months to come. As it may take several months until you’re settled on the right Levo dose.
GP: it doesn’t take months. Just give you a dose, and check again in 2 months and you’re good. Plus you’ll need more in pregnancy. Plus repeat of the first two answers.
Me: Respectfully, I disagree based on the very many people I spoke to (having this forum in mind). Also, why are you going against NICE guidelines?
I clearly have a good case for a trial which may significantly benefit me, even if you forget pregnancy.
I don’t mind doing as many tests as you want, but I have an issue with having to have months from now (wait until results come back, after you obtain a blood test, and it’s impossible to get an appt as they only offer emergency ones in the morning, which are very hard to get). I’m at a point which I am struggling with day to day living.
(Also GP didn’t advice anything in regards to low cortisol - I made sure of pointing it out and she dismissed it).
Also, the Lab completely ignored this exact test request…. So… 🤷♀️🤷♀️🤷♀️
GP: Well, the guidelines aren’t rules… they are there as a guide.
Me: Well… I disagree, guidelines are exactly that. They are meant to be read and followed.
You’re choosing to ignore them at the detriment to the quality of my care.
Also the antibodies wouldn’t be telling anything special anyways other than distinguishing whether or not my Hypo is Autoimmune or not and the treatment would still be the same. 🤦🏼♀️🤦🏼♀️🤦🏼♀️🤦🏼♀️
GP: you’re not walking out with a prescription.
I felt furious and ignored.
We go back at blood tests again while I don’t know what to do with myself to even do the most basic tasks in my day, coz all I want to do is lie in bed, watch Netflix and drink coffee.
On another note she did ask advice to local Endo as to how to proceed with my case.
Also had a call with my diabetes Endo as it was due and they at least prescribed a SST ( Short Synacthen test) as they thought my cortisol of 166 (178-556) at 8am was possibly concerning!
So now I’m back at repeating FT4 and thyroid antibodies! 🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬
If you reached here…. You’re a gem!
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OudMood
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Sorry to hear you’re going through this. I gave up trying to talk to Drs - got some great advice on here; wrote a letter and emailed it and finally got an increase in dosage (refused previously to up my dose above 25mg. Took years to get that too!) Might be worth putting it in writing as they like everyone else are audited. Hope this helps.
Go for the Health Board now. I have just sent the 2nd of my complaints about not being able to see an Endo working in South Wales and I am in North Wales. They say I should see him privately, but he doesn't take Private patients, as I informed them. And I asked then why can English Patients be referred to him, but you won't allow me to see him???
I also asked then why do you regularly send trauma patients to the Royal Stoke via Air ambulance to be treated? It is the same thing in my book. If BCHB can't give me the treatment I need, they should send me to an Endo of my choice in Wales!
Also asked what are Endos names who work in the Health Board and I said I wanted to know what is the main training that each Endo has had.
I would not allow my 3 year old grandson (type 1 diabetic at 3 years) to be treated by an Endo majoring in Thyroid disorders!
That’s what was making me more mad the way she was saying that regardless of what I say or prove I won’t change her mind.
She wasn’t even giving me a reasonable excuse. (I mean… the guidance is clear, there’s really no good reason).
She wasn’t even concerned at my situation.
At the beginning of the consultation we’ve gone through my symptoms and I’ve mentioned how I’ve lost around 50-60% of my hair and how I had periods where I would only brush my hair once a week and keep them in a braid and bun the rest of the time to prevent tangling..
To which she asked..
So are you bold now? 😳😳😳
Like what? 😳 I didn’t say all of my hair, but if you really wanna know, yeah you can see the scalp through my hair!!!
She asked me to show her (I wear a head covering), which I complied and I can swear she gasped.
P.s. I recently turned 28… so way too early to be hairless!
Yet she somehow still decided that my levels weren’t “serious” enough to be treated.
Like what???
Do they want me as a corpse to start treatment? As I could swear that’s a little too late.
As someone who’s been told at 11 I was hours from dying in my bed overnight (undiagnosed T1 Diabetes) I can swear this is where it feels I’m slowly heading.
Hair loss like that can be iron related, and the tiredness. Have you had a full iron panel done recently? If not, ask her for one of those asap. If your ferritin is low your hair will fall out. Even if you bought Levo, to take under your own supervision, it wouldn't work well if your iron was low.
I have been trying to complain through the local CCG, but they don't seem to do a lot.
You will find it online, though here it is called Betsi Cadwalader Health Board, Have I spent that right the!!!They run the Health network/ hospitals, GP's etc etc
Honestly, you did well not to completely lose your cool with her, and it’s safe to vent here—we get it. Of course you’re upset—this is not what we’re promised by This Morning and similar shows is it?
“Just talk to your doctor and get the help you need…”
That’s only very very rarely been my experience, sad to say.
Oh dear OudMood , hugs, I really feel for you. You put up a good fight but she obviously wasn't going to budge. Reminds me of the 2 years I repeatedly went to the GP with obvious symptoms but he didn't even do a blood test until my hubby accompanied me and said "Do something with her, I've had enough".
Can you budget for a consultation with a private endo? If so, send for the list from ThyroidUK and ask for recommendations from members.
I honestly feel like I did. I don’t think there was anything I could have done differently honestly.
Oh dear your experience is really sad 🥺🥺. Your hubby sounded exasperated 🥺.
I honestly don’t think I’d be able to do the private consult right now.. 😣🤧
But on the flip side I am not done 😆
They aren’t gonna get rid of me so easily.
I still technically have 2 endos, Although not thyroid ones, they are much more interested in my overall health and I know I’ll be able to make a strong point with them, at least with the journey to pregnancy as they are aware of it and we have been working on the diabetes front, so I’m hopeful they won’t ignore the thyroid side of things..
I’ll also raise hell in the practice too.
On a side note, if all else fails, I may attempt to source Levo without a prescription.. if that’s even possible… 😅
Maybe even outside of the UK until I can get a private consult.
On the other hand I’m a bit stubborn…
I’m paying my NI contributions..and I deserve care. 😂
yes, my health and time is worth more..but let’s not forget I also have insomnia most nights and I’m petty! I also do the best of my creative writing at night! 😂😂🙊🙊🙊
I sooo feel for you ! I’ve been “fighting “ with my Gp for ages . Do you homework on the side because they do not seem to be interested at all . I was hypothyroid since at least 2006( that’s when I found out that I am , while trying to conceive, test done abroad , GP had to redo it and put me on levo ). Then thyroid cancer in 2015 ( had to change 2 GP to get sent for an ultrasound ), I have not seen an endo on NHS in all this years although I asked for … I do not take the dose prescribed by my Gp ( she misdiagnosed my daughter and husband - skin condition, but still if you are not competent , send us to see a dermatologist, do not just try on things like people a guinea pigs . I went to see a private dermo , that puts correct diagnoses . Been told I have asthma for a year in a half , no spirometry , just self made flow peak … “ we aren’t doing that at the moment ), on 2 inhalers that do not help . Went abroad , had CT , Spirometry and lots of other tests to find out that I have signs of chronic bronchitis and possibly sleep apnea ( the tiredness during the day that I connected to thyroid disfunction - after having C , always concerned that maybe came back or spread . Gp just laughs you off . Luckily , have a couple of cousins that are doctors ( working in EU ) and always checking with them . I completely lost trust in this health system . I raised my voice at the reception staff and asked them why do I have to go abroad to find out things in regards to my health , when I am a citizen of this country and been working the whole 20 years I lived here ( - 6 month maternity leave ). They made me a face to face appointment with the senior partner as I said that I am filling in an official complain and will write to CQC , NHS and media and first I should let them know . I do not take 175 Levo as my Gp told me , I take 175 for 4 days and 150 for 3 days as an endo from an other country advised , my blood tests are ok . Very frustrating , but do not give up …Thyroid function is important to conceive . My daughter is 10 and half now , I had IUI and it worked from first treatment , although it took about 2 years since referal. Good luck and keep banging until you are heard !
I agree with Jazzw. It is now a question of injured and "pigheaded" pride on the doctor's behalf. The minute they saw all your research, the doctor's so-called "professional" pride was pricked.
Do not go back and expect a more reasonable response on their behalf. The doctor has dug in to their "professional expertise" and it would hurt their pride to agree that you may have been right. Definitely seek out a doctor who is more attuned to a progressive approach to thyroid problems and willing to admit that they don't know everything about every medical problem. In the end it is better for your health if you find a more up-to-date doctor.
Thank you. I am blessed with a good judgement sense. The moment I saw her I knew she will make trouble for me.
And the moment I mentioned guidelines from top of my head she was dismissive, as a point of desperation I put them under her nose and I could see her ego being hurt right there and then.
She did read them and agreed to the referral for info (I.e. she speaks to endo, not me) and discarded everything else 😂😂😂.
I know of at least one, possibly two very genuine GPS in the surgery, unfortunately they are not doing normal appts anymore and you can only call at 8am for the appt which means you cannot choose the doc or anything else. (That’s if you get lucky and get offered a spot).
I never saw this GP before and I will refuse further appts with her as it will be a waste of my time.
I’m glad it was a F2F appt or she would have simply cut the phone otherwise honestly 😂
Sounds like GP has heard horror stories of overmedicating and/or doesn’t like to be questioned. Ideally, change GP. Complaint to practice manager (with the NICE guidelines) will be needed.
Well yes. I think you’re spot on.She actually did mention this (which is wrong, but ok):
If we medicate you too early, or too much, then you can go the other way and become Hyper bla bla bla.
To which I changed subject quickly as didn’t want to hurt her ego even more by telling her that your thyroid is either hypo or hyper and exogenous Thyroxine is not the same as body produced one etc etc.
I left that battle and focused on the NICE guidelines from there.
She topped it off with antibodies will tell her if the thyroid will fail in the future.
Which I guess I see where she’s coming from…
But her notion seemed to come from “the antibodies are doing the attacking” whereas the attack happened and they’re cleaning up the mess.
Everything is so much harder because despite my TSH rising to almost 6, my FT4 is between 14-15.6 and the limit is 12!
I wish there was a way for me drop the FT4 down a bit so they would just stop questioning it 😂😂
It’s not just your GP, NHS has so many flows on so many levels and especially dealing with patients. People who experienced healthcare in other European countries are terrified with the level of healthcare services.
On a practical side:
1. Write your MP and ask to help you. They will open the case and will send requests to the practice and likely to CCG, so something might come out of it.
I will try to exhaust the other routes first (I.e. other GPS, the practice manager and my Endos..) as wouldn’t want for it to be brushed off as I complained to early or something.Annoyingly my TSH and FT4 are “not that bad” so it won’t “make headlines” if you get what I mean..
So I would want to have a better case.
I lived in Italy for many years and yes, so many things of the NHS baffle me. But even Italy is not perfect.
But the GP is a whole different game there. He/she knows your whole family by first name, they actually specks the time you need with you, care about your health as a whole, before prescribing you even a tiny sugar pill they would do all the blood tests in the world to ensure you need it or if it is the right thing. As soon as tests are back you’re called to a F2F and discuss things moving forward. Plus GPS are not as medically clueless as they are here, I believe they have more training (but not sure how, so I digress).
And yes, all that falls under the Italian NHS. No pennies spent.
I honestly considered doing a full body check up for me and hun privately in Italy in the future because these guys are so incompetent or unwilling to help here. 🤷♀️🤷♀️🤷♀️
But finances aren’t there right now, so maybe at some other point..
I am considering it.. and probably will do it for the interim if I don’t get a prescription in the next few weeks.But this is also a matter of principle. And will be pursuing this under the NHS.
I’m also planning pregnancy, so they really need to have their A game honestly due to so many things potentially going wrong otherwise…
So sorry.....can you see a different GP in the practise. I know this can be hard as I note my practise just piles all the appointments in a heap and then they take turns to do lucky dip! (my visualisation) so a I get a different one everytime which is pretty pointless tbh. In your shoes Id try a different GP or if thats not possible write to the practise manager....put a precis of medical history plus thyroid symptoms etc. Enclose copy of the guidelines and express your serious concerns over the decline in your health and to date that no one has started treatment. I would ask for an explanation in writing and a date when they will be starting treatment.
State you want your letter put on your medical file. State a time frame for their response (otherwise they could take months!)
They won't like it but they will have to reply.
If that doesn't work change your GP Surgery...... You could go private but check them out carefully first- mixed bag! Lol..
My pleasure. 😊 Don't give up. Its appalling you cant book your preferred doctor. Even if you have to wait I would get that booking in. You can always cancel.
I’ve seen them cancelling things themselves! I had an appt booked in for 27 Oct and since I’ve seen the “emergency Gp described above” they have removed the previous appt! 🤷♀️
Also.. I don’t know if I can keep waiting till November for treatment.
So sorry that you are being put through this trauma.This medic is signalling loud and clear (she clearly cannot recognise this either!!) that she is out of her depth, clueless and unable to support her patient....therefore a danger.
GP: I don’t care what you tell me or show me…
You’re not walking out of here with a Levo prescription.
0/10 for "bedside manner"!!
I've had a quick look at your previous posts and can see no FT3 results, without this it is impossible to evaluate your thyroid function as I'm sure you must know.
TSH tests, beyond an initial hypothyroid diagnosis which is why they were first developed, are not a reliable tool for dosing. The powers that be mistakenly insist they are, with sometimes disastrous consequences. Before this nonsense FT3 tests were regularly carried out, in my area this was stopped c2001. I don't know about other areas.
TSH 4.94 (0.27 - 4.2) over range and deserves investigation
Without medication TSH should be close to 2
When medicated it should be close to 1
Your result indicates hypothyroidism (in some form) and a need for treatment.
The current state of thyroid disease diagnosis and treatment is totally unacceptable as is evidenced by the posts here...yet petitions and concerns seem to fall on the deaf ears of those charged with the responsibility of caring for our health. I doubt there is another disease so badly understood in 2021!
The NHS is capable of truly amazing work but thyroid disease is it's Achilles Heel!
Have you tried discussing your situation with your practice manager, they have a degree of clout!
I have replied to someone above that I think anything involving the Endocrine system is greatly misunderstood.
I have dipped my feet in 3 endocrine conditions and they are all a mess.
Diabetes is greatly misunderstood and wrong guidance is given all the time, PCOS is just being told you need to loose weight (which is nonsensical as the weight is a symptom not the cause, plus some people are actually skinny!!) and Thyroid.. well you know the last one.
Doctors misunderstand hormones and their balance and their impact on life so greatly.
I think there needs to be a return in more Homeopathic medicine and concentrating on important supplements to reach optimal health. But I digress 😅😅
I had requested to do a full Thyroid panel, to which the GP obliged (didn’t give him an option not to 😂) but the lab didn’t do FT3 and TPOab and TGab either.
When I mentioned it to this GP she was aware and just said “yeah, they never test that 🙄”.
P.S. my TSH was even higher at 5.69 I think in March.. so yeah..
Im annoyed that the TSH dipped as obviously no one wants to feel unwell, I just want a high result to get diagnosed hahah 🤦🏼♀️🤦🏼♀️
I have done a BlueHorizon panel (TSH, FT4, FT3, antibodies, cortisol etc) just this Monday morning, so will expect results possibly by Friday/Saturday. So I’ll know more.
This GP also requested another FT4 and antibodies, so I’ll go tomorrow morning for that.
That is an absolute disgrace how you were spoken to. It's easy to say "find a new GP" but from experience can say that it's easier said than done. Best of luck to you x
I went to a whole new shiny bright GP armed with tests results going back years: synopsis
This year TSH 1 - T4 right near upper limit T3 4.2
Last year TSH 14 - T4 low - T3 4.0
I was happy. I thought clear evidence here that I'm not converting well if at all.
Response: Your thyroid function is good.
"Dr, how is it good?"
- TSH is low
"Dr why is T3 important then?"
- T3 is critically important for metabolism but it is not thyroid.
"Dr, if I may counter, isn't the problem with hypothyroidism that metabolism slows down? We only take meds, not because of the thyroid itself, but because of the resulting slow down in metabolism, so my T3 level not improving is of concern. You can see no matter how high my T4 or how low my TSH is, I am not converting T4 to active T3 hormone, which is the whole point of taking Levo. That is why I am bone tired and not losing weight'
Autopilot: Your thyroid function is fine. Chronic fatigue is never related to underlying illness.
"But"
Nope: Your thyroid function is fine
"Can I least get a levo increase?"
- No. Your thyroid function is fine......
"What about my vit D and iron levels?"
- Both are low, but it presents no real impact on your thyroid function at all, as you can see, your thyroid function is fine......
Sorry you’re having so much trouble, it seems like the doctors in the UK are more thick headed than in the US. I pretty much go in and tell my doctor what’s wrong and what I need, and it’s done. I have ordered NDT from Thailand in the past, no prescription needed.
Ah the NICE guidelines! An excellent good practice guide written usually by a large group of experienced clinicians and others experts in the field. Such advice should surely be welcomed but sadly there is a problem…….medical practitioners really don’t like to take advice. Not all, but in my experience this is a thread running throughout my sons very complex health problems. An endocrine department and executive board in a large South London teaching hospital gave their verdict on NICE guidelines in response to a formal complaint about over treatment. As a result of failing to test as per guidelines my son was over treated for 9 months. This is what happens when good practice is not mandated. I am sorry you are having such a difficult time with your GP, mine was the same, I eventually got a referral through another hospital department to a sympathetic Endocrinologist. Not I hasten to add at the hospital mentioned above. Good Luck.
Statement : NICE Guideline are not compulsory they are their for guidance only
No it was King’s College Hospital. I saw a very good Endocrinologist at G&ST who supported but would not prescribe NDT. He provided monitoring for one year whist I changed from Levo
Get to speak to them again and ask to have what he stated put in writing on your record so that you can sue them should you find your health deteriorate thanks to their mis -are of your condition. Having it written on your record sometimes scares them enough to change their minds. Not always but it has worked in the past when i threatened it.
and/or find a new GP, because this one sounds terrible.
That sounds like a pretty miserable time you are having. I overcame my GPs resistance by writing a letter, as someone else has suggested. In it I pointed out that in refusing to give the help I was requesting she was keeping me in a state of ill-health (for which GPs can be held responsible). I worded it as pleasantly as I could, wrapping it up in pleasant comments and trying to avoid sounding 'or else-ish'. Best of luck
I feel your pain, and personally I always feel a bit better after a rant.I believe your diabetes endo is doing the right thing by ordering a short synacthen test,. It is important to have your adrenal function properly checked because if it transpires you have an adrenal issue such as Addison's disease you may be tipped into an adrenal crisis if you are prescribed for example levothyroxine without your adrenals being supported with steroids. From what you write above, I'm guessing your GP has likely not taken this into consideration, but if the GP has been taking it into consideration s/he could at least explain their rationale for no prescription. Hope you get a resolution soon.
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Perseverance paid off !
A GP that Listens !!
Nice guidelines post Radioactive iodine
NICE and NHS Guidelines - Links to useful bits!
