These are my recent blood test results. Gp has said "no further action". I feel t3 is low and t4 has gone down from 15 and tsh has gone up from 0.01 in the space of a month. I feel I need proper investigation of thyroid. Gp has referred to neurology for assessment for fnd and is considering a diagnosis of chronic fatigue syndrome as well. I feel backed into a corner that if I go back I'll be told there's nothing can be done, bloods are in range. I did feel really good but since September I've gone downhill. Fatigue, dry skin & hair, palpitations are back, sleep is terrible, feeling bloated, sore legs and joints and awful brain fog. Was supplementing b complex but stopped as b12 came back high. Take vit d with k2 well away from thyroxine. Given up tea/coffee.
What I want to ask is does people think those results are enough to go to private endo with. I have had conversation with chosen clinic but I'm not sure. I really don't want to pay hundreds for someone to tell my my bloods are fine!!!
Thanks in advance.
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BiscuitBaby
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Thanks Ella95I'm on 150mcg. I just worry about paying hundreds to be dismissed. My Dr wrote to my local endocrinologist last year who wrote back saying my bloods were fine without even having a dialogue with me or Dr. Even gp was a bit perturbed and wrote to another one but now gp not taking ot any further. I got my letter in saying I'd been referred to neurology and it made me cry!! I'm tired of having to battle.
Make sure you know what you want the outcome to be and whether you can afford the emotional angst and hit to your wallet if you don’t get it. The former probably hits the hardest.
I’d say that everyone on this forum battles in their own way and yes, it’s exhausting and dispiriting.
In the last twelve months, I have had many private consultations and as many diagnoses. Consultants have contradicted one another and if I take into account all the diagnoses I should be dead by now. In fact, I sometimes wish that I could just shuffle painlessly off this mortal coil.
The private sector is like a roller coaster. I expect to have to pay but I don’t expect a £230 for a 15 minute consultation giving a diagnosis of IBS or a bill for £1600 for irrelevant blood tests. And that’s just the start of it - or in my case, the end of it.
The NHS is in worse health than its patients. Part of the reason is the pressure which it’s under but most if it is the slide into privatisation which has been emerging for a few years.
The drugs which patients need are not appropriate, not available or too exensive to prescribe.
I’m sorry for you BB. I’ve been battling like this for ten years. I now have no expectations at all. That way I won’t be disappointed.
I'm really sorry that you've been through all this. I know what you mean about the emotional angst if I don't get results. I might feel better about things if I feel its properly investigated. At the moment it's all adhoc and noone seems to join the dots. It's a big undertaking to go private that's why I'm only considering it at the moment. It's just awful and makes me sad that people suffer. We shouldn't have to. Yet other diseases are well treated! I hope you find wellness soon.
The neurology department might be experienced enough to recognise a patient who is hypothyroid.
I think that the endocrinologist's response to you leaves us to believe that he doesn't understand about clinical symptoms (disabling) and relies upon a dot on a blood test result which might indicate the patient has hypothyroidism. Why on earth would we want to be transferred to somewhere else!
You can click on my name and read about my journey to be diagnosed.
Thanks to Thyroiduk.org I know how to treat myself and I was so fortunate to consult the 'last of the trained doctors on NDT or diagnosis by clinical symptoms alone" Dr Peatfield and Dr Skinner. People travelled from all over the UK and it's no surprise and we don't need to state the reasons.
To refer you back to a GP who obviously doesn't have the knowledge or he would have diagnosed you himself is ridiculous.
One of my GPs phoned to tell me happily that my blood tests were good and I had no problems. I cried. I then went to the hospital to get blood drawn (I had just come across Thyroiduk at this time). I then had a telephone call from another GP and she asked who'd given me the second blood test form - I said "I did". She said come an get a prescription you have hypothyroidism!
She was unaware I had already phoned the surgeryfor a blood test form as I had been visiting my very unwell sister.
It would seem to me that many endocrinologists have jumped on the same badwagon of deciding by a blood test alone, whether or not to allow a consultation.
The professionals seem to believe that they know more than a majority of members on this forum - but they fail to be aware that many of the members are disregarded despite being very symptomatic.
It reminds me of when my children were unwell that instinctively we know that all is not right with the child and do our utmost to find out what the problem is.
It's the same with hypo as it is us who have the clinical symptoms we know there's something not right at all.
Shaws Thank you for your reply. I went and read your story. It makes me want to weep. It's terrible what you suffered at the hands of medical professionals who take an oath to do no harm!!! I'm so pleased that you are well now. It makes me think twice about going private to see if I can get better but I don't know where else to go!. You are at the mercy of who you see! I don't understand why asking for more of a hormone you can't make yourself should make you feel you are asking for crack cocaine! We know our bodies and know when it's right or wrong. What we don't know is the damage done by long term low thyroid hormones. But the medic will probably blame suppressed tsh not the years of illness when undermedicated!
Thyroiduk.org.uk's website was a great help and assistance to me and I was very happy to become a member as it is through their advice I was able to recover my health.
If you wish to consult with a doctor Thyroiduk.org.uk have a list of helpful doctors.
I was also fortunate to consult the last two doctors trained upon clinical symptoms alone. One was Dr Barry Peatfield and the other was Dr Gordon Skinner - both pursued by the 'authorities' for assisting patients to recover their health and for not following the 'guidelines'. It certainly was not their patients who put in a complaint so we can just 'guess'?
Dr Barry resigned his licence due to the strain he was undergoing. He was still able to consult with patients but not prescribe but he gave good advice verbally of how to restore our health.
The other doctor was Dr Gordon Skinner. He had two consulting places, one was Birmingham and the other Glasgow. People travelled from all over the UK to these two doctors and were thankful for the advice and care. Both doctors saved many lives and were knowledgeable and sympathetic and kind.
Dr Skinner's staff were devasted when he died at work one day and have spent a long time collating all of their scientific studies and have stated that it would 'shake' up the whole method of diagnosing/treating. They needed to raise sufficient monies. - which is quite hard to do - in order to publish it.
They stated that every day at work with Dr Skinner was joyful, happy with a lots of laughter.
That phrase "My Dr wrote to my local endocrinologist last year who wrote back saying my bloods were fine without even having a dialogue with me or Dr".
We see many statements like that on this forum and it is utterly shocking.
We would not like to consult with these people - they like an easy life and just collect money. I doubt they know any clinical symptoms at all, never mind having a brain that functions. I doubt also that they could, if the patient underwent an interview, help or advise in any positive way.
The advice on this forum from quite a number of members would put the 'experts' to shame due mainly to their dismissal of the patients distress in being constantly unwell - some may have had to leave their employment.
I know, I agree the advice on here has been invaluable to me. I wouldn't have gotten tis far without it. I woukd be stuck with my first Dr who told me I was nearly 45 andight just have to learn to live with it. This was after I refused his antidepressants telling him I was ill not depressed. I had also just told him I felt like I was dying!! He kept my tsh 0.04 under the higher limit for tsh for over 6 months. I felt so bad. It took a long time to have the ability to search fir and process information. This forum has helped me so much.
I think a number of medical professionals, if a patient returns too often due to not feeling any improvements in their body, they dismiss this patient as being 'troublesome'.
One of my GPs phoned to tell me:- "your TSH is too low, your T3 is too high and T4 too low".
My response: "Yes doctor my TSH will be low because I take T3 only" - T3 is high because that is what I take. The T4 is low because I take none. GP "but T3 converts to T4". No doctor that is not correct, T4 issupposed to convert to T3".
This GP was in his 60's so unless his patients were all doing well on levo he would probably dismiss those who were still symptomatic and most probably prescribe antidepressants.
Why can an Endocrinologist make a statement (never having seen the patient before) "saying patient's bloods were fine? The bodyand disabling symptoms has been missed out of the equation altogether.
There's truly been plenty missing in their training because they don't know any clinical symptoms - never enquire about them and putting all of the emphasis on a blood test alone.
That's maybe o.k. when first being diagnosed but I even had to diagnose myself when GP phoned to tell me I had nothing wrong and all results were fine. I had never known anyone who had a problem with their thyroid gland.
The pity of this is that my TSH was 100 so, as we are all aware on this forum - and never studied dysfuncional thyroid glands that it has been a rude awakening when we find we've to search the internet for some help/assistance and thankfully find two that have the same viewpoints.
'How to diagnose/Treat/ and/Restore Health in those human beings who've a dysfunctional thyroid gland' without the need for blood tests and emphasis being put on 'reliief of clinical symptoms' and prescribed NDTs/Natural Dessicated Thyroid Hormones made from animals' thyroid glands as was the case originally from 1892 onwards or a trial T3 /T4 .
How is it that our old-fashioned doctors diagnosed due to clinical symptoms alone, We were then given a trial of NDTs, slowly increased according to our symptoms until we were "symptom-free". They did this without blood tests and I believe Big Pharma introduced blood tests in order to expand their profits.
In the UK 'Natural Dessicated Thyroid Hormones' were removed from being prescribed despite it being the very first replacement from 1892 when patients no longer died a horrible death.
The modern method of the endocrinology have slowly been 'weaned off' taking notice the patients' disabling symptoms and might well prescribe anti-depressants as the patient still complains.
They need to be retrained as we are not machines - we are flesh'/blood and symptomatic if under-treated or undiagnosed.
Due to doctors not being able to prescribe T3, it means we have to request an Endocrinologist appointment in the hope that they will do so.
Due to its extortionate cost in the UK, many are reluctant to prescribe it.
The following is an excerpt:-
"The current price in 2020 of 28 tablets of 20 μg liothyronine is £165.18, compared with £26.15 in 2010 thus increasing by a factor of more than six. This has resulted in NHS England listing liothyronine as a medicine that should not be prescribed routinely in primary care,8 although it is still licensed."
surely it depends how you feel? My TSH is 0.005. My T4 is way off the scale but my T3 is high but normal. I feel very well and don't want anything changed. It's not just about numbers.
HiI completely agree buy all the Dr seems to care about is the numbers. I'm glad you feel very well. One of these days I might feel well too. I did for a wee while but it's dropped back again for some reason.
so it sounds like the GP is just looking at the numbers and not listeningto you. I have had this too and walked out during a consultation because the GP was staring at his laptop screen, telling me to reduce my meds, without listening to me or examining me. Disgusting
I know. Its rubbish. This current one seems to have hijacked my care. She told me twice I was overmedicated and I needed to reduce dose. I refused! She wrote on my recent lab request fir thyroid bloods "anterior neck pain which patient believes to be thyroid related even though tsh suppressed". They just don't care!
can you change your doctor within the p ractice? I did that and the new doctor had a completely different attitude which enabled me to continue with my high dose of medication.
HiI did that before and the second gp was great but this one seems to have hijacked me. I tried to get an appointment with the other one and I couldn't. I had to take with this new one. I'm not going to get anywhere except to neurology with this one.
They seem to only take notice of the TSH - which is from the pituitary gland - not the thyroid gland. They are also not familiar with the clinical symptoms some of us develop.
Do you always get same brand levothyroxine at each prescription
Do you ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
Previous post shows you had folate deficiency
Couldn’t see any vitamin D test results
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Hi Thanks for your reply. my dose is 150mcg. Been on that for about 6 months. I don't have up to date vit d results but my last test was in the low end of normal. I've been supplenting since then so it should be higher. That was about 6 months ago.
Testing was just after 9am with 24 hours since last dose . I always get the same brand. I don't seem to have any issues with it. Its from boots. Accord??? (Can't remember)
I have spoken to a clinic this afternoon to get advice and I have to say the lady I spoke to who does the admin was waaaaay nicer than any gp admin I've spoken to. The endo will prescribe t3 if needed but she will consider all my hormones which gp not doing. They just seem to stabbing in the dark and getting nowhere and I feel she wants to blame me! I'm making it up or imagining it or not taking meds properly. I had that one too and I'm tired of it all. I just want to feel normal again.
No, because your own thyroid makes Ft4 and Ft3 …roughly 80% Ft4 and 20% Ft3
Problems start when prescribed just levothyroxine as your own thyroid output stops, leaving you totally reliant on conversion of levothyroxine (Ft4) into Ft3
Hi slow dragonMy vtiamin d is high strength one recommended on here. Cant get to it to see make at the moment. B complex is also one recommended on here.
I did stop the b complex about 3 weeks before these tests as the test before b12 was high.
I never thought about liquid! Good idea. My problem is gp now dismissing me as having functional neurological disorder or chronic fatigue. She's of the ilk that tsh is too low so I'm clearly overmedicated. Twice she asked me to lower my dose but I flatly refused. I told her it would make me ill.
My other thing is my thyroid is painful. I have a sore throat, jaw ear and neck on one side. It's been sore for years and I just keep getting fobbed off! I've not read anything about thyroiditis being painful. It worries me.
Hi slowdragonI don't clench my jaw at night. If what I've read on here is right ords is when you don't have a goitre? I've never had a goitre and now I think about it, the pain has got less as time has gone on and dose has increased. I'm not waking up taking painkillers now! It does worry me. I always thought pain was the body's way of telling you something was wrong but every time I've mentioned it to gp I'm dismissed....again. I think they have me labelled now as difficult hypochondriac! Even though in 44 years I hardly went tp gp for illness. Thank you for your advice. Its invaluable!
Both your T3 and t4 are low in range and you have continuing symptoms so that’s grounds for a referral to an Endocrinologist. It is interesting your tsh is so low yet the other numbers are also low - do you take meds first thing and wait an hour before eating and drinking? I’d be avoiding caffeine and calcium for several hours as they affect absorption too. What are you taking? I think I’d want a jolt of T3 to see if that works. (You can self source when you get desperate but try Endo first. Nhs if at all possible.
Hi JAmandaThank you for your reply. I take meds in my morning. I have given up tea/coffee in case that was contributing. I don't eat till about 10am. Dr just will not refer to endo. She has referred to neurology though!! They will see me. Endo no! Think I'll just have to bite the bullet and do it privately. I know our NHS is the envy of the world and if you need emergency care, I'd rather be here than many other places but it's really frustrating trying to get basic care from a gp! Well from my gp!! I can't speak for others!
Try the DIO2 test, I used Regenerus which showed I had the mutation and which explained why I felt under medicated when my results were 'normal'. This won't be the only answer but will give you and the GP or Endo evidence. Good luck!
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