I am sharing the letter I received from the hospital ( it’s taken them well over 6 months). I was so ‘cheesed off’ with the reply that it’s taken me 3 days to read it again and then I spilt coffee on it 🥴. I don’t know why I thought I’d get anything better, but the response is actually farcicle. The endocrinologist in question whose name I can’t show unfortunately ………shame as it really is an accurate reference to his personality and I chose every chance to call him by it at every opportunity 🤣🤣🤣🤣🥴. You know how some pets actually look like their owners…….well he over time he has morphed into his name so so well it’s actually uncanny 🤪🤪🤪😉. Wish I could give clues 😃.
After I has seen him , he told my gp to continue my meds on only 50mcg, even though I was to stop t3 ( he actually relished in the fact I would feel really ill as if by way of punishment for daring to think I could possible self administer liothyronine without his personal approval, let alone under stand it). I then , a few months later after feeling horrendous , had bloods taken and my tsh level had zoomed up to around 27 . So with my gp and with gradual increments, we increased it to what’s now 100 mcg. I also was under the recommended amount in b12 but it came back as ‘no further action’, I argued this saying I had taken it myself orally for 3 years, they gave in and I had my first b12 injection ( initially great , but not long after, no difference really) , I have my next b12 injection due in May and I will get bloods done then. My ferritin was 34ng/ml(30-400) and folate 4.2 my/ml (3.4-99,999) , but as I’d just scrapped into the reference range they wouldn’t address it.
My weight very quickly rose another stone when I stopped t3 and then I saw another endocrinologist who was a total ‘wet lettuce’ he said continue till next time same 100 mcg , nothing else even though I said t3 makes me feel better and when I said about my rapid weight gain, bmi over 30 and in total over 3 stones increase , his reply was ‘well it doesn’t come off itself you know’ 🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🤯🙈.I have no words other than rude ones.
I’ve just had bloods done ……some have to be redone🤯 as were done in the wrong test tubes 🤯. However the results are in …..I now take NO t3 and 100 mcg levo ….t4 15pmol/L/(9-23), t3 4.6 mpol/L(3.5-6.5) and wait for it drum roll please …..……TSH 0.29 miu/L (0.35-5.5). Now what will they do ……
I had a call from a different gp who had logged the results . His receptionist called , she said they were reducing my meds to 50 mcg …….I said ‘oh no your not’ she then went back and came back 🤯🤯🤯🤯🥴to me and said your right ‘ oh no we’re not’ …….continue on what your on until you next see ‘wet lettuce’ endocrinologist !!!!!!! 🤯🤯🤯🤯. Basically we have no clue what we’re doing so we’re passing it over to ‘wet lettuce .’
Am I having a nightmare ……..could I actually even make this up if I tried .
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Rowing2
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Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Really interesting talk on YouTube, link in reply by Humanbean discussing iron deficiency and weight gain. Also towards end how inflammation can also be an issue
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Was test done as recommended, early morning, ideally before 9am, only water to drink between waking and test and last dose levothyroxine 24 hours before test
Assuming yes, you need next dose increase in Levo to 125mcg daily
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
hi slow dragon, is it not lightly that the consultant will try to reduce my levo as my tsh was 0.29 instead of like you say in line with my weight, increasing it? Thank you
Not surprised, my experience with the GMC is they ignore the first complaint and only investigate if they receive subsequent complaints. Thus, it is important we complain when there is genuine concern.This letter is luke the set of instructions you sometimes get with purchases from the Far East, broken English. To be fair they do a fantastic job and they are using a second or third language. However, there is no justification for this unintelligible reply. They have clearly told a junior to knock up a response, possibly outsourced overseas. I'd be tempted to send it back to them asking for an English translation!
Thanks for trying, it's vital we submit there conplaints.
I was wondering if they get penalised each time they use a comma or other punctuation, at school I was taught if in doubt leave it out, but this still needs more!
I live in France where the health system is great, but there is no help whatsoever, everyone has to speak French or nothing. It's hard when trying to remember everything from school days when aged 77 years old. That letter requires correction, amazing.
what are your symptoms ? Meds are meant to treat symptoms not reach a certain number on a range. I was asked to reduce my lio from 25 to 20 (I also take 100 Levo). The result for me over several months was: no singing voice at all, hoarse speaking voice, no hair on arms, falling fast asleep after exercise, being unable to string a sentence together. A lot! So I added back in some old supply of 5s and am pretty immediately better.. but if my Endo doesn’t accept that when I speak to him in May, I’ll be self sourcing.
have you complained to PALS yet, about the poor decision making, poor communication (with an unhappy and not listened to patient), poor actions and worse results?
Anyone would think it was their job to make you feel worse!
Unfortunately PALS are NOT an independent advocacy service! They are supposed to be but unfortunately, as they are funded by the NHS, staff are never able to act as a solely independent source for patients. There used to be fully independent advocacy services but the financial crash in 2008 saw an end to that. I can say this as was involved in setting up such services 30 years ago across the county where I live! Yep, I am sceptical!
I do know people who have achieved better outcomes via PALS complaints. I am not one of them and my two encounters with PALS have both been substandard - to my mind - but bad treatment still needs to be complained about and then re-complained about, if any change is going to happen longterm.
I have tried Healthwatch but they do not take on individual complaints. The charity act on themes and watch for repeated complaints about a service and then raise the issue. Very poor service in East Kent. It was certainly better in the NorthWest where there was a very proactive HealthWatch.
So what were your results when using T3? Were you way over range, as they’re implying?
And what’s this mobile phone analogy they’re using? Personally I charge mine (mobile phone) to full overnight, then use it during the day, this is practically the same as taking a bolus of T3 in the morning and letting my body use it during the day! Unfortunately if we’re using that analogy, then if my body/thyroid were working correctly then it would be stick the phone on charge, use it a bit, stick it on charge again, use it a bit more. So not only is their use of the analogy patronising, but also incorrect.
Regarding being referred back to them, can you request a referral elsewhere (I know I’m spoilt as we’re right in the border between two different trusts and can ask for the non-local one, it’s nearer)? Point out your ’history’ with them? Alternatively, go in with an open mind, see what they have to say, and then write another letter pointing out that despite the ‘training’ that this letter has suggested, they’re still patronising and fobbing you off etc.
Hi Beads, the phone analogy was only of many, your reply was great. There was also one referencing the use of steroids snd how they make you feel great( ?????🤯🙈) but then you come down with a crash and they damage your health . I’ve had 4 different consultants and I have to say they were all completely useless , this one just added in patronising and condescending to it.
When I took t3 I varied from taking a quarter of a 25mcg tablet to usually a half. I felt better ( never my normal) , but better . My yrsukts where my tsh was 0.05 , t3 and t4 were in the upper levels and once t3 was just over red range. The moment I asked for it on the nhs I was met with a barrage of abuse. The ridiculous thing is that now fully clear of t3 my tsh levels fluctuate and this time was under ref range anyway .
Your exercise for today is to show an example of patronising language being used in response to a complaint of being patronised.
I'm extremely sorry that you felt patronised during the consultation...
There, there, don't worry about being patronised. We didn't mean to make you to feel patronised so it's all fine and wonderful.
That you did feel patronised is, I'm sorry to say, all your fault. Not ours, no, not at all because, well, we didn't mean to.
Random apposite quote:
“It's a general issue of what we call ‘the ego-centric bias,’ which reflects our confidence in our own good intentions but our constrained ability to recognize that others don't have access to our intentions, only to our behaviors,” says organizational-culture expert Jennifer Anna Chatman, PhD, a professor of management and associate dean for learning strategies at Berkeley Haas.
I am right in thinking you have only been given one B12 injection. You should have had them every other day for two weeks or untill no furthur improvements.
Thank you so much for this . I’m ringing them after lunch to ask why they are not following NICE /NHS guidelines on this. That’s probably why I felt good for approx a week then back to rubbish
hi there just had a heated discussion with the nurse at my gps. Apparently they really shouldn’t have given me the b12 injection anyway as my b12 is borderline and my intrinsic factor( I’m not sure where that shows in my results) is fine. I will she said feel better for a short while then your body gets rid of excess and mine is ok. I’ll get the once ever three months a d that’s it . I’m honestly just sick and tired of all the fighting to get anything or even be heard. I feel invisible
sorry to hear you are being messed about like this. None of the B12 tests are conclusive and the fact that you responded well to the first shot suggests it is very much needed. What is borderline in this country would be treated seriously elsewhere. Maybe post on the Permicious anemia society health unlocked forum for more support. Would you consider injecting yourself? Lots of us do.
Thank you so much for your help. They have told me only many occasions I do not have pernicious anemia, however I trust absolutely nothing g they tell me and I don’t know where they tested for this. I would definitely self inject, where do you source it from to do that ?
Just a quick one......when an endo told me she was removing the T3, I almost begged her not to, said I was feeling well for the first time in years, tried to show her before and after pic's of me on it. She shrugged, turned away, looked out of the window and said over her shoulder "ask someone else then, I'm not giving it to you". You all know the outcome of that....
Fatter, more tired, bloated (think bicycle pump 😁)but hey ho.....what do you do? Tried sourcing it myself etc etc, tried Slimmers world (put on 2 kgs 😁😁, honest!) so now, I just get on with life. Sulk a lot, but get on with it........ These forums help however . Hope you're good x
I d add o feel your pain. I’m now over 3 stone heavier( one stone added just after I stopped t3). I sourced my t3 from Turkey . You can get it over the counter at chemists. Cost next to nothing.
Yes, I was getting it from Cyprus, a friend goes there a lot and so was buying it for me. Then they decided they didn't want to do it anymore - never found out why, always wondered if they were nervous of bringing it back in to the country? Never had a weight problem until I became hypothyroid....but according to "that" endo and my (ex) GP it's all in my head??! ah well.....
I so feel for you, same as me. I’ve always been fit and could control my weight. Now I feel like I’m in a fat suit and that I waddle . It’s just soul destroying as nobody cares , or understands,🤯🤯🤯🤯
Poor you too....it's rotten isn't it? I never feel nice, no matter what I wear etc. It's not purely vanity - it's control..I feel as though I have none over my own body. Really unpleasant....
hi there. The last consultant after is talked about weight , just didn’t understand that it had nothing to do with vanity like you said. There is just so much I can’t do with my grandchildren anymore . He also said do you want your goitre removed , but you’d have a scar 🤯🤯🤯🤯🤯🤯I said I couldn’t care less about a scar, but at this point I don’t think it’s of any use to me, if it gets worse I’ll let you know. I’ll think of you too, you feel itching in your own skin
Hear, hear to the grandchildren...if it's not physical (how can I be with this great roll of weight around my middle??) then I'm anxious......Lordy!! All the best Rowing2 x
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