Hi , I've not posted for a little while but I had a unforgettable experience this week with a NHS endocrinologist I thought I need to share to see if I can make any sense of this .
I spoke to this person earlier on in the year when I was taking 75mcg of levo .
I told them I was experiencing a range of side effects ( heat sensitivity, flushes , heavy sweating , low libido , unable to think clearly to name a few ) ever since I begin the medication (around 5ish years) .
It was agreed that I'd take a six month break ( im at the point im willing to try anything ) from taking levo to see if said side effects disappeared .
After initially feeling revitalised within a week I quickly started to feel really ill as In head pressure, vertigo , off balance, nausea and extreme fatigue.
Two weeks in I went to see my gp who sent me for bloods , three weeks in he told me I really need to restart taking levo again . So I began back on 50mcg.
Fast forward to this week roughly 6 months ..... I had my follow up with said endocrinologist, I explained what happened since our last conversation , my experience coming of and that I was still experiencing the same issues as before.
Now ..... this is how it went
Told me ....
The experience I had coming off levo vertigo , nausea, head pressure , off balance wasn't down to not taking the medication...... even tho these disappeared when I started to retake.
That because I'm only subclinical I probably shouldn't be on levo anyway.
Dismissed the side effects I have , even though Its Stated on the information leaflet inside the tablet box
Said the side effects im experiencing is down to being over medicated even there telling me im under medicated .
When I could get a word in I asked ...
if there were a different brand I could try ( tried teva currently on eltroxin). They told me to ask my pharmacy.
I also asked if I could be a poor converter from t4 to t3 . I got nothing back.
I asked what my options are going forward.... they were...
Come off all together.
Ask my pharmacy for different brand.
Or , and I couldn't get my head round this and it kept getting mentioned was to stop taking levo and take statins instead...... now am I missing something but what do statins have to do with thyroid function?
After arguing for a few minutes and going around in circles it came to the conclusion I need to speak to someone else for a second opinion.
He was dismissive , antagonistic and contradicting.
Unfortunately this is such a common experience amongst members here and I'm sorry you have had to go through that. Its often more productive to take one thing at a time and chip away at things with your GP/s. Endo's can and do make things worse at times.
Have you managed to make any progress with vitamin levels? What are your latest blood results for thyroid & vitamin levels?
The experience I had coming off levo vertigo , nausea, head pressure , off balance wasn't down to not taking the medication...... even tho these disappeared when I started to retake.
Understand that low vitamin levels play heavily into how we feel when hypo. Your B12 is shockingly low and supplementing that especially will really help how you feel. Actually it will be essential.
How much D3 & K2 are you taking? Did you start that after this result?
With a level as low as 250 have you discussed pernicious anaemia with your GP and been tested for it?
If you end up not going down the injection route then you may even need more than just a B complex.
Please re read this reply to you. You will need a separate B12 sublingual or spray initially.
I restarted back on 50mcg in June, currently still on 50mcg , I'm actually scared to increase because when I've gone to 75mcg and even 75mcg/100mcg alternative days in the past it's made my side effects worse.
I feel like I'm in a sort of no man's land at the minute . I can't step back and feel I can't move forward.
I got into such a big argument with the endocrinologist I didn't get my most recent results ( bloods taken last week ) hopefully they'll come through the post.
did say that I probably need an increase , but this is where it went a bit mad , because when I told my side effects , they said it was because I was over medicated , but then telling me to take more. I said what do I do then ...... then said come off levo and take statins instead....... I got so angry I had to laugh.
I tested negative to coeliac , I'm not strict gluten free but over a week I'm probably 90% of the time.
How much folate / B12 is a good start point to take?
Started on teva the last couple of years has been eltroxin , it states on the information leaflet in the packet the side effects I'm experiencing...... I was told to speak to he pharmacy myself to see if there were any alternatives
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.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and about a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
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) and continue separate B12 as well until B12 over 500
Post discussing how biotin can affect test results
I’m so sorry HashiJ; you’ve been treated very badly by this endo, whom I suspect has trained more in the field of diabetes than thyroid. As Jaydee1507 has said, it’s good to share both thyroid bloods and key vitamins so members can better advise.
that sounds horrendous and I think I might know who you saw - was it a Professor with a French sounding name?
Have you considered seeing someone on the Thyroid UK list? You could see if your GP can refer you to a named consultant in the list. Alternatively you could go privately to most on that list although I appreciate not everyone can.
I’ve had 12 Endos, only one was good the rest were clowns.
You could minimise your costs if you have your NHS blood test results, obviously follow up appts and further blood tests add up.
However you can’t put a price on quality of life and loss of earnings may equate to far more than the cost of private treatment. I know I’ve lost out on salary when I’ve been unwell so private care is well worth it.
here is what statins have to do with thyroid function - the Endocrinologist is so ignorant as to be dangerous. Lookup their profile- diabetes specialist by any chance???
HashJ there is no easy way to break this to you. You need to start reading up on your condition. You need to be able to advocate for yourself in real time actually in a consultation.
You need references and notes for meetings and need to learn how to manage your condition and not submit to mismanagement. You have had enough experience now to convince you of this I am sure. It is all here for you on this forum. Please use it. You can find all sorts through reading lived experience and some of the papers. It takes a while to get into the lingo but it does come.
Unless you are a small guy in weight 50ug will not be enough. You will need to look at vitamins, minerals and thyroid levels and TSH should never be used as a management tool. Your symptoms (or lack thereof) and thyroid hormones are the most important measures to get to the sweet spot.
Please read my bio and some of my posts. I have successfully self advocated and have recorded the journey to share with others.
Jaydee1507 is right you are better working with a poorly trained GP than an equally poorly trained but 10x more arrogant endo.
Lots to work through but just a bit at a time. Your health is worth the effort.
I am starting my journey to better self-educate and get my thyroid medication and levels right for me. I cannot thank you, Charlie-Farley, and everybody else here enough for posting your experiences. Hashi J, I am sorry for what you went through. I do hope you can use these responses to gain strength and keep advocating for yourself, and by so doing, advocate for us all.
This forum is amazing. They (and hubby) saved my life. Take your time and don’t be intimidated by the subject if it is new to you. That goes for anything in life. 🤗.
I’m not a natural with study, it has always been hard for me. I have just been consistently trying and probably putting in more hours than the bright sparks, but I get there. I sometimes think the slower more laborious route to knowledge lays down firmer ground on which to build. Qualifications only mean the person has been formally assessed. Self acquired knowledge is just as valuable as long as you critically evaluate your sources. Universities would say the opposite - but they have become much like corporate businesses. I’m not decrying the uni experience, I did it myself, but this is not the only route to knowledge- just a very well regarded route to qualification.
I have got that impression. It would be useful if people having seen a recommended endo and had a negative experience fed this back to the Thyroid UK admin through the website, rather than here. We are limited here as names cannot be discussed openly in the forum, only by Private Message.
I have also seen comments with regards to the difference between what they are prepared to do privately and through their practices within the NHS.
It is no exaggeration to say if they dare to go too far off script the GMC will hunt them down, even if the results are positive. However, they will stand shoulder to shoulder with professionals failing patients but following the guidelines to the letter.
Before my time, but Dr Peatfield was one such hero and he was mercilessly hounded.
Sarah Myhill is in the papers again for daring to go against the dogma and treat the patients. They have raked over every sod of ground to dig up mistakes.
The reality is every doctor in the course of their practice will make a mistake - news flash 🙄
The fact is, if they follow the guidelines their failures/mistakes will not be recorded as such and the blame will be levelled unashamedly upon the patients. Hence the national sport of gaslighting is alive and well in the NHS.
It’s always hard at the start and it would be so much easier on all of us if the GPs and Endocrinologists were adequately trained - this is a systemic problem. Couple that with some absolute ‘howlers’ underpinning the thyroid science it’s a bit grim. However, the more of us who educate ourselves and push back the better. My dream is we will reach critical mass and help to overturn the current flawed treatments and under pinning science.
Thankfully there are people like diogenes on our side.
I would make a complaint against this endo. They get away with this in part because people don’t complain. He made you very unwell for a long time.
You have already recounted the experience here, formalise it into a letter. Find out about the complaints procedure at the hospital You could speak to their PALS office.
God knows the damage he’s wreaking on other peoples lives. At least you’ve found your way here. Those other people are probably in a living hell.
I self medicate with NDT - the change in my TSH etc was not regarded as significant by the NHS - it had doubled and I felt really unwell, but it was well within the tick box range. I take a tiny dose (1/2 the standard starting dose the GP would give of Levo), and it works really well for me. I just didn't get on with Levo in any form/brand. If you look into the history for the switch from NDT to Levo - it's quite shocking, there were no studies/clinical tests of the one vs the other. I think there are probably many millions of people around the world who would be better on NDT than Levo. I didn't have the energy at the time to fight the system and found it easier to conduct my own experiments with B12 supplements and thyroid. In my circle of thyroid takers, we also all take a lot of B12 - maybe our genetics; however it's another thing GPs etc get very wrong - it's water soluble, so you can overdose. Good luck in finding your way to full health.
Hi ..is taking b12 supplement good to take with thyroxine?..If so why ? Just maybe thinking as I reach 62 to start taking something as I'm very forgetful now.
Many years ago I saw a lovely private dr who sadly died suddenly & too soon (I am sure others remember him). He told me he recommended all thyroid patients take B12 & that he believed you needed levels above 500 for the body to utilise thyroid replacement properly.
Many reasons - anti gastric parietal cell antibodies are common with thyroid disorders which will impact intrinsic factor and stomach acidity - making it harder to absorb nutrients generally and B12 in particular. Anyone over 50 (even in otherwise good health) is going to start to struggle to absorb enough B12 from food as parietal cells function less well with age, so B12 needs to be either from fortified food or supplements. But not until tested, because supplementing skews the results and makes a hard to diagnose deficiency even harder to diagnose. So I'd ask for (or do your own) folate and B12 check. Memory could also be a blood sugar imbalance, too-low cholesterol, insufficient omega 3 fats, or any of the Bs - esp B6, B9, B12 and cofactors like magnesium. Bear in mind that a functional (cellular) deficiency may make serum look high in range, and testing is far from clear cut, so get a copy of actual results and don't assume 'in range' means no deficiency, as it doesn't! (B12 deficiency can affect pituitary signalling so can directly contribute to low (sometimes high) thyroid hormone levels).
Ok right...its alot to take in ..I have adrenal insufficiency plus no thyroid so im on thyroxine replacement and steroids..I have always had to eat every two hrs or so and eat high protien meals to keep my energy levels normal ? Otherwise I start to shake and sweat at the forehead but they done a test and say im not diabetic ? But recently im having great short time memory loss...
Pre-pre-diabetes levels are still enough to cause neuropathy in some. Might be worth getting a glucose monitor that you can use regularly and Datis Kharrazian's book 'Why Isn't My Brain Working?' is a really useful read, if you felt like it. Best wishes
I agree with everything you've said, especially re B12, but I think you may have missed a 't' - can't overdose? (although of course some types of B12 may suit people better than others). Cheers
From my own experience, the first endocrinologist I saw, told me that all my symptoms (and there were loads, all listed on a ThyroidUK provided list of symptoms) were due to Vitamin D!!!!. He was extremely patronising and dismissive.
I only got a referral to an endocrinologist because levothyroxine was making me feel worse and regardless of many, many visits to my GP regarding this and many extra drugs to treat my additional symptoms, he told me there was only levothyroxine to treat underactive thyroid.
In response to this, I told him that I was going to stop taking it. I had tried various different brands and then liquid levothyroxine (via the endocrinologist) to no avail. I felt worse on the medication than when I was diagnosed. It was a routine blood test that showed it up. I had no symptoms that I was aware of.
The breaking point was when I received a copy of the letter the endocrinologist sent to my GP. It read like it was written about someone else. Nothing was true, everything he wrote was incorrect. I was livid.
I contacted the Endocrinology Dept., explained that I was not happy with his attitude etc., and asked if I could see a different endocrinologist. They said yes.
I had to wait about 5 months for the appointment, which was a dreadful time for me and mine. It was a phone appointment because by that time I couldn't even walk, was out of breath just moving, awful fatigue, palpitations etc.
When the new endocrinologist phoned, I explained, as briefly as possible, what had happened over the previous 2 years. She immediately recommended liothyronine (T3).
I had read a lot about T3 through this forum, and had wondered for over a year whether I might be a poor converter, and had wanted to try it, but, GP can't prescribe it, and first endocrinologist totally dismissed it.
I was delighted, even though I felt rough.
I have been on gradually increasing doses since February this year, and have, very slowly, seen an improvement, although I still feel I will need a higher dose. My next appointment is not until February 2024.
I wanted you to know that you are not alone.
The NICE guidelines and rules are ridiculous.
I lost my job because of this, and because of the delay waiting to see endocrinologist, my condition worsened, big time, so I have a long way to climb back up. Naturally this doesn't just affect me, but my family too. I cannot help them. They have had to help me!!! Thank goodness for them.
Perhaps you could ask to see a different endocrinologist, as I did.
It is better if you can have all the tests done privately before your next appointment if you can afford to. I wasn't able to.
Best wishes for your future success in being listened to.
There is a lot of similarities with your post .I went to the doctors with palpitations that felt was in my throat, got sent for bloods and that's when I got diagnosed.
Got told to take levo (teva) and within the first week got told I needed to stick with it.
Every time I went back I was told to increase dose which made me worse.
I come off for a period of time , but a blood test later I was told I need to go back on ..... this is when the endocrinologist came in and suggested eltroxin .... I didn't feel any better on this either and this is where I'm upto currently.
Have you considered going private? I had years of ‘there’s nothing wrong with you/it’s all in in your head/hysterical woman’ from the NHS. Now I pay a private Endo, which I found through thyroid UK, and I have a diagnosis and he even prescribes NDT, as I don’t get on with Levo and T3. He would not be able to do that if I saw him on the NHS. Go figure… This is all not cheap but it makes all the difference to my life.
They push these for any condition in my experience.
My cholesterol is low triglycerides really low and have asked to take statins….once!
I was told age or any other condition is reason for putting on statins … I rolled my eyes this actually was our practice pharmacist as they review our meds in areas of long standing conditions.
In my case only overweight and have higher creatinine levels that’s been since diagnosed with Hashimoto’s (hypothyroidism) for over decade but no other Kidney problems had scans and all their bloods ok - 2 GPs now said they think this is just my normal and of course I have few autoimmune problems of which none require a statins.
I’m quite aware of how many people they do help and it’s not many, and those who are on them often suffer side effects and for the amount of longevity they provide versus quality of life whilst on them for some isn’t worth it. I follow a cardiologist and recited that all back at her along with Id like to see those studies for all other health conditions before considering anything can you provide those for me …as I know even for cholesterol it’s not that great an advantage as described … needless to say I’ve not been asked me again.
There was a study- HUNT II that Malcolm Kendrick commented on. Well worth a read if you haven’t already. It has been completely ignored, NOT REFUTED, because it goes against the mainstream and they have nothing to come back at it with so they ignore, they do not challenge and run the risk of letting loose a massive can of worms.
I have often been worried about my low/normal range’s although my last cholesterol check was higher but triglycerides still low I eat all fats eggs they say don’t eat you’ll get high cholesterol 🤦🏻♀️
My mum has low cholesterol but has heart problems she is 80 odd but got arrhythmia my dads cholesterol was ok bit higher but not classed as high he died of heart problems he had BP problems for decades.
We need cholesterol for our hormones and I’m having problems with all mine as perimenopausal too and oestrogen progesterone and testosterone your adrenals all require cholesterol.
- they have started a mass experiment without fully understanding. The high fat being responsible for high cholesterol as been de-bunked. Carbs and sugars get converted though. Our brain is made up of 60% fat. heres an article 😜
So they swear people off animal fats these days, but my grandad ate dripping sandwiches and cooked with lard and lived til 92 sharp as a tack to the end he did have a heart attack in his 70's but survived that.
My dad (his son) ate margarine, reduced his meat and fat intake having listened to the current dietary advice at the time, ate more cereals - never had a heart attack and was diagonsed with Alzheimer's at 71 (though there were signs long before that) and died of Alzheimers at 83. Oh and he was Hypothyriod and they put him on statins. 🙄
BUT it is wrong of us to question their authority - we should just do as we are told.
My grandma was 94 when died her mother 92 and they didn’t die of heart related things and likewise ate dripping sandwiches and all natural fats, she was large lady with no heart related diseases- food was better quality then not chemically pumped stuff or had heavily processed laden diets… and not subjected to many drugs to suffer other consequences.
Absolutely agree re fats/ brain and connections re Alzheimer’s also to add have you read Dr Lisa Mosconi she’s a neuroscientist looking at Alzheimer’s she has a Ted talk out too … along with a few books, I have the XX brain one… she actually thought I would be good candidate for her latest study being a late perimenopausal woman.
Re we should just do as we are told - I now say can explain what that is why I do I need whatever it may be, why has whatever occurred etc not necessarily in that order …I now question everything and research everything I’m not being fobbed off from outdated stuff many throw at us. 5 years in many things with medical profession that was taught (some topics only an hour lecture) will be outdated and the reliance now on NICE guidelines and processes on screens even results are traffic light coded so telling our GPs what next….they are actually more than that, some can’t even use their intelligence it’s monopolised by pharmaceutical industry and probably why so many struggling and leaving the profession early. I’m definitely not questioning them personally, and they need to be held accountable if things are being skipped it’s only way the system will change.
If I’m diagnosed with something I want to know my choices, my possible problems along the way that come with it and what I can do naturally to help myself … I actually don’t want to take medication if it’s some lifestyle thing that is needed to change, unless these medications are absolutely necessary but realistically we have to in some instances. When you hit things like, that’s just what we do in these cases but not answering your questions, you’ve hit their threshold of knowledge in that area … I’ve had some GPs absolutely own up that’s all they know or didn’t know something.
YOU ARE SO ON POINT! It is wonderful to read the above. I will definitely be looking up the TED talk. Thank you so much for that. Next to Hypothyroidism this is my next big bug.
Hi where was your endocrine specialist ? Iv found that out two years ago so I asked to be referred to another ..It could be you need to change thyroxine make of tablet as I was having symptoms to one of the makes and it was due to the compound ingredients that they use to make the tablet..
Please ask your GP to test vitamin D and Magnesium. Low vitamin D causes extreme fatigue. Magnesium is essential in converting T4 (Levothyroxine) to active T3. Low magnesium can make you feel unwell. 50mcg is a low dose. What are your test results for TSH, T4 and T3? Many endos are diabetic specialists. The NHS is heavily funded for diabetic services but little for thyroid and other Endocrine services. Choose your Endo carefully. Make sure that their specialism are thyroid and parathyroid diseases.
Hi , I don't think I've ever had a magnesium test done .I'm currently waiting for my most recent test to come back .... itll be the first time t3 has been done too
I am on a mix of NDT and tirosint (which is levo but with only 3 fillers) may be worth trying to source some as many people find with tiro a lot less side affects due to the fillers being minimal. I could not tolerate standard levo on the nhs I actually felt a lot worse on it and kept blacking out when standing where something was affecting my blood pressure
My daughter had a very similar experience with the NHS endocrine department. She had over 25 symptoms on levo. No one knew what to do with her and she struggled for 3 of her teenage years. They said they thought she possibly had CFS as well (and was put on another waiting list). I lost hope with the NHS (I’m sure they thought I was exaggerating her symptoms) and researched private doctors.
After one appointment with a private thyroid doctor, they switched her to NDT (and iron tablets) roll on a few weeks and we had our daughter back to being a ‘normal’ teenager. She now has one symptom (heat intolerance)!
The NHS endo advised us to stick with the private doctor and hastily took my daughter off their list!
I would strongly recommend seeing a private doctor. Unfortunately it is expensive and NDT is not cheap. But it might be the only way to help you recover.
Hi , I need to look into going private and weigh up the costs.My main side effect on levothyroxine is heat intolerance and when I get hot I sweat profusely , its degrading
What is it with these so-called experts?! I had a similar experience with an Endo before I'd even got to see him! He emailed me that if I wanted to try T3 to forget it! (I'm a bad converter of T4, so although T4 reduces my symptoms, I still have all the symptoms of an underactive thyroid, cold sensitivity, dry skin, brittle hair, a messed up metabolism etc). I've all but given up on trying to get the right treatment, or even try an alternative after 11 years of mistreatment!
This is a very bad read and shows us that Addison's is still un known for even some endocrinologists. I am do sorry you seem to have drawn the short straw with yours. My Endocrine Dr is not that bad but they really don't know enough and if I'm honest I don't feel safe in their hands.
Much like yourself I've struggled with thyroid medication both T4, T3.. Tablets and liquid, the medication causes my colitis to flare up I'm also lactose intolorent to... (no thyroid full thyroidectomy in 2019) 🤦♀️
I've done everything asked by my gp and the awful uneducated endocrinologists I've seen in the last 4 years.
I'm now on the last roll of the dice, put on T3 by an endocrinologist last Oct who totally ignored my pleas that this medication is not working.
A year on this T3 (Roma) and nothing as changed, I'm now very hypo.. A gp at my surgery as now arranged for an urgent referral to one of these awful endocrinologists 🤦♀️(27th Dec, wow if that's urgent I'll eat my hat) as I said I'm very hypo now, (probably not converting or absorbing the drug) and the gp as stopped my T3 medication until I see this endo 🤣 making me even more hypo if I can't get my prescription re instated.
Everyday I sit and think how can this be happening 🤷♀️.. I can't make any thyroid hormones, without thyroid medication 🤷♀️ it's basic thyroid knowledge, any endo who looks at a patients blood work and sees very hypo after they have struggled yet again on thyroid medication should have the ability to recognise this is not doing the patient any good, health wise.
But the impression I get from the endocrinologists is... Its not important, you can't be having symptoms related to the medication, like yourself I took myself off both the T4 and T3 (not combination) and every symptom went, and like you I felt amazing for around 2/3 wks, then I went hypo and had to go back on the MEDICATION, then all the bad symptoms returned.
Mine are bowle /stomach related, diarrhea, cramps, inflammation in bowles feeling sick, headache, just feel awful when on them, as an example I'm in bed now, just taken my 8am 10mg of T3 Roma and my stomach feels like I've drank acid🤢 (take with full glass of water)
This time I've decided to go in all guns a blazing, (not to argue, not to shout) but to arm myself with knowledge about my condition, how thyroid medication CAN have bad side effects, regardless of what endocrinologists would have us belive, I've already got my ammo in the from of my blood printouts for the last year, with really awful photos (on my mobile of what I'm passing poo wise) it's not a nice picture as my Dr noted.
Now I'm not saying this endocrinologist will take any notice, and I think I'd faint if she did, but this time if she tries to put me back on the thyroid medication merry - go - round by trying to yet again prescribe another form of T4, T3.. I'm walking out.. Contacting PALs and complaining.
Stating that I'm now without adequate thyroid medication and in danger of being seriously ill.
I know we should not have to do this, but 4 years of sheer hell I'll now try anything.
As one member said you'll need to do some homework on your condition, look over all thyroid blood work when on the thyroid drug and when off it, put your symptoms down on a list, besides the ones that are on the thyroid medication leaflet, but most of all stand your ground.. This I know is difficult, as these endocrinologists think there gods, most are up there own backsides,.. Either that or its the NHS telling them to gaslight us🤷♀️.
I hope you manage to get a better endocrinologist, do some research on better endos, there's not many good ones out there 😔
But most of all... Don't give up❤️.. It's your health... Not there's😔
So sorry you went through this, its interesting, to me at least, seeing it from a male perspective, most members on this forum are women because thyroid disorders are much more common for us and as you've discovered many members have had very bad Endo experiences.
There's a perception, maybe rightly or wrongly that on the whole men are treated much better by medics than women, are treated with more respect and less arrogance. Women often feel patronised, ignored or belittled, in some ways treated as " hysterical" females, at the mercy of their emotions and hormones. This is a common experience from both male and female doctors.
In a way, although it doesnt help you one iota and I'm in no way being flippant or dismissive of your experience, which was atrocious, its useful seeing that crap thyroid treatment isnt something that just affects women.
I've never seen an Endo but when my dose was increased from 75mcg to 100mcg of Levo, I started having some very peculiar reactions, pins and needles in my head, itching and crawling. As I have a history of medication allergies I was alarmed and felt sure I wasn't tolerating it.
To cut a long story short my GP emailed the Endo dept for advice and their reply was to stop Levo cold turkey as I probably didn't need it. Now my hypo was caught early and my TSH hadn't got above 7, however I had several below range FT4 readings, showing I was clearly hypo. The Endo had clearly not read that bit as my GP noted in my records.
My opinion of Endos nose dived as a result and I've thankfully never been on their radar since.
Hi, it could of course have been a medication/filler issue, but those are very B12 D sounding reactions and you do use your B12 faster when treated. Did anyone test your B12/folate? Glad you are managing to avoid endos.....Best wishes
Yes I have PA as well which was diagnosed pre hypo so I get regular B12 injections. I think the pins and needles in my head were a warning sign of developing chronic vestibular migraine which happened last year. I also have Fibro and weird sensations are par of the course lol.
I have never bothered with one , I got the measure of the situation reading on here so never asked for referrals- I just steamrollered my GPS 🤣👍. I will tag Hidden in.
Tara I have a horrendous tale to tell, but it was over 10 years ago, and I believe the wretch has retired.....but, if it may be of help, I'm willing to share.
I think this one post and responses will be a fast track to understanding your situation and the landscape we are faced with. Have a brew and prepare yourself 😂👍
I think this is a very pertinent time to flag the need for more research and funding for thyroid issues. It costs you and your loved ones, your friends and your work colleauges Nothing to sign this petition. We need to push for some of the fines met out on drugs companies overcharging for medication to be invested in treatment - TREATMENT that is currently letting down thousands - many of whom do not even realise. It is a travesty...... here is a link to helvella 's post urging for people to sign in support.
Dear HashiJ, You are having some very difficult times and without doubt your experience with some parts of the NHS is appalling. I cannot resolve anything via an endo either, or GP for that matter. I went rogue, had the Dio2 gene test and it confirmed I had thyroid issues from both parents. I stopped taking the statins .
After lots of advice from the very helpful people on this forum I began low dose NDT and sourced T3. I don't take much but feel so much better now than I have for years. Blood pressure down, cholesterol level down without the poison of statins. Weight reduced to a healthy BMI. Be warned however Statins for some with thyroid issues is not a good mix. The NHS website even cautions about this especially a brand called atorvastatin. Some people do ok on statins, sadly some do not. Read up on them before you take any. You may have to battle to feel better but I hope it happens asap for you.
Hi, not sure if others have said same but have you had your testosterone tested and sex hormones? At first I thought perimenopause straight away but can safely rule that out seeing as you're male
Yes I know what u r going through. They don't realize how one Really feels going through this. I'm having same problems myself Getting nowhere ..
Hi guys , sorry for not posting for a while.. little update . Got my most recent results of endocrinologist.... finally!! ( no ranges tho .. I assume they are standard nhs range)
Tsh - 6.09
Ft4 - 9.8
T3 - 5.5
Total Cholesterol- 6.8
LDL - 3.9
TG - 1.8
HDL - 2.4
Still currently taking 50mcg daily ( I know I need an increase)
I've been waiting for a second opinion from a different endocrinologist, but guess what the original one I spoke to has apparently seeked a second opinion himself from a colleague . and now I've been struck off nhs endocrinology and won't be getting any future appointments from the clinic .
I believe this is because he didn't like me standing up to him and quering him about what he was telling me ...... ie start of conversation he told me I needed an increase.... I told him side effects I was experiencing... he said I was over medicated. I lost faith immediately
I'm going to hopefully speak to doctors this week but really don't know where to go now .
Private is an option , but I'm worried about ongoing costs !!
Just want to walk up to a wall and start banging my head against it.
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increased blood pressure and heart rate
my doctor should be my endocrinologist 
North Star -Levothyroxine 
GP Changed my Brand of Liothyronine 
