so after speaking to nhs endo yesterday and her once again upsetting me….! Quite obviously she will not help me at all . So am thinking if I ever get meds which meds are good for my sensitive stomach. Hi am trying to be optimistic and see my self getting better but am so low and upset that the nhs doctor spoke to me like I am an idiot and repeatedly told without high tsh there no treatment and she doesn’t recognise Hashimoto’s my high Tpo means nothing and she wouldn’t even listen concerning the private test I had last month . Am so low at her reaction and rudeness to me . I am determined to get better coz I really can’t live like this much longer . Finding it very hard and frightening that I am getting worse as each day goes by . Sorry I know everyone on here is going through same or been through same .
Am just so upset at how endocrinologists whom no nothing about thyroid only short study during there education , can determine and choose my fate for me and we as patients hard at their mercy and have to beg for help and they refuse .
🙏💕
Jemjet
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Jemjet
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The stress of fighting the system is so damaging. You try to be polite and logical, and end up having to challenge and be forceful - which even for me a very direct person - makes me feel like I’ve stooped to their level. I absolutely hate when we are gaslit and pushed like that while advocating for our own self care and well being. Rock and hard place.
Deep breath Jemjet!!! Deeeeeep breath!!!
Others have better replies/details on the type of hormone replacements available and pros and cons of each.
My UK medicines document contains details of all UK-licensed thyroid hormone medicines.
'What type' is a complex question. We have two active ingredients - levothyroxine (T4) and liothyronine (T3).
Probably no-one ever gets prescribed anything but levothyroxine to start with. Hence the only issues are availability in the required dosages and any issues you have. For example, if the product has an excipient (inactive ingredient) which you do not tolerate.
And we have no licensed combination products. No licensed desiccated thyroid products.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products.
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Trouble is, we are all individuals with different views and experiences.
What works best for you might not be what works best for me. And, unless you already know of an issue with an excipient, I have no idea how to predict which will be best tolerated. I think every available product has members who find it the best for them.
I gotta say the knowledge you all give me is totally amazing the more I read the more frustrated I get that if we know these things why can’t the consultants doctors and legislation guides see how wrong they are treating people with all type of thyroid issues . Think are human rights are being discriminated against . But omg without place like this to help and understand people fear and worrying conditions we would be so isolated 💕❤️
Thyroid uk has a list of more helpful doctors and endos available via the website you might want to ask to be reffered too or you can consider self treatment.
I have made an appointment with private specialist though due to being on half pay because I have been off work so long am struggling as many of us are , just so annoyed at lack of care from nhs and these endo whom have no knowledge empathy , sympathy , or interest in there patients suffering so terribly with no QOL . Makes you feel so alone because we are at the mercy of these so called specialist , our life in there hands , it’s frightening !
Hi it was my nhs endo whom is so not helpful had a appointment on Fri she said she doesn’t recognise Hashimoto’s and she isn’t aware of of the private bloods I had so ignored just totally oblivious to any symtoms I have . I see the private one on 2nd of April 🙏💕
lots of endos like your NHS one, most are pretty appaulling. I hope your next appointment will be more helpful. Lots of people are having problems with the tevo brand of levo, so one to avoid if you can.
I would hope that if you asked for a preferred brand to be prescribed at a private appointment it would be taken on board. Do you have issues with gluten as this is common with thyroid issues.
I am so sorry Endocrinologists from experience think they know it all we we are idiots. I makes me so angry! 🤬 GPs also jump on any thyroid results out of range despite the problem being something entirely different. In 30 years I’ve only ever found one Endo who was brilliant and listened and worked with me not against me. But he was a rare breed. I understand how upsetting it is but stick to your guns and go by your symptoms not the numbers.
When I was first diagnosed (by me) not the GP I was at rock bottom as she kept telling me I was fat and needed to diet. I was on 600 calories a day. Three months I was fit and within normal range weight but put on 2 and a half stone in 2 months. I felt like you too and my children kept telling me “mummy you fell asleep again”. My brother was hyperthyroid and at one point had what I call a moon face. Once I saw that in my face I went straight to GP and demanded a blood test. Within hours the hospital sent for me as I was close to being in a coma. So although I know it’s very hard when you are so low go and demand blood tests now. Plus you will get better advice on here than from any Endo. Sending you hugs and prayers 🤗🙏🏻
Sorry for the late reply not been very good at all xx I can’t tell you how poorly I go and exhausted I am physically and mentally . Just one more week before I see the private doctor 🙏💕 sometimes feel I don’t know How I am excusing . Thank you for your support 🤗
Don’t worry its ok. No judgement here. I totally understand that’s exactly how I was. Not being believed or being treated as a nuisance makes you feel worse I had hoped things had improved over 30 years but obviously not. When you go to your appointment make a list of your questions so you don’t kick yourself for not asking. If you are up to it question everything you are told and tell them to explain if you don’t understand what they tell you. I appreciate going there will be difficult for you. Good luck lovely 🤗
Forgot to ask what level you got to when they called you and what is a moon face xx my face swollen and just been referred to primary eye care due to swelling blurred vision and ocular migraines xx
I was basically at the same point as you. My blood test went for analysis at the hospital and they called me that afternoon to go straight in. The Endocrinologist was shocked at how bad it had got and said I was at the point of going into a coma. Loads of meds hydration and rest later it took me a very long time to get back to anything like normal. I also put on loads of weight within 2 months which is difficult to shift.
The “moon face” is the same for both hyperthyroidism and hypothyroidism. My brother was hyper and I remembered his face and one morning saw the same hing in the mirror. That’s when I went straight back to the GP and demanded a thyroid blood test but I was hypo unlike my brother
. It's like a swollen round face (caused by fluid retention) with bulging painful eyes.
Sounds very much like you explained above Avoid foods high in salt, have a high protein low carb diet and plenty of fluids I’m surprised it’s taken you this long to see a private Endo Might be worth calling his secretary and say you need to be seen urgently Let me know how you get on I’m so sorry you are going through this but there will always be help on here for you 🙏🏻🙏🏻
Thanks for your kind reply xx problem is my tg and tpo very high which nhs dr says is just a blip and doesn’t mean autoimmune thyroiditis because my ths is within range and fluctuates to 13.6 as they are different every time she won’t prescribe anything and didn’t even examine my throat that was originally scant by ENT DEPARTMENT she just ignored all my symptoms and dreadful unwellness intact as stated in previous post I am exciting not living and that’s if I can stay awake . It’s so shocking her lack of knowledge so hopefully when I see private thyroid specialist she will help I will then gather evidence and report her and also go to Pals at work xx 🙏🥰
Have you got a Patient Access Account? If not just put patient access into your browser and create an account. You can order repeat meds but most importantly you can see your GP notes under Medical Record and the results of your scan and any other letters from consultants. It’s amazing what you can find out now! 🤗
Yes I have and can see results that is not my problem and also sometimes gp doesn’t put all results on lol typical. My problem is that my tsh fluctuations so they won’t treat me and I am left suffering terribly day in day out and by the time my tsh stays high my thyroid will have deteriorated that much it would never work again my antibodies get higher and higher and my tsh is obviously not the way to get to cause of my problems but my stupid endo ignores how unwell I am 🙏
That’s disgraceful. No doctor or consultant should refuse to help when you are clearly not at all well. They should not go by TSH anyway they need to look at Free T4 and Free T3.. My TSH has been <0.01 for 20 years and no one bothered But I felt well and you do not so there is something else going on that needs investigating urgently. No wonder you are so down and miserable I really hope this new Endo can help you, why they never listen to us I will never know! 🤗🙏🏻
Somehow somethings got change because something tragic is going to happen I hate being at the mercy doctors consultants that pretend to know what they are talking about and have no knowledge whatsoever, but yet try and tell us how we feel and if we are unwell . If that can’t even interpret blood results what chance have we got .
While you waiting to find a Dr who will help, you may check into common deficiencies that have similar symptoms and can affect thyroid levels and/or conversion of T4 to T3... Vit D, B12, folate, iron/ferritin, magnesium and zinc. I just read a recent study that found that high tpo levels may indicate low B12, which can make a huge difference in how you are feeling. So does vitamin D... Not only does it affect conversion, but it helps with depression. If you start taking D3, consider a supplement that also contains vit K2... It helps direct calcium to your bones and teeth and away from your arteries. There is so much fine tuning, once our bodies get out of balance. For a gland (thyroid) that produces a hormone that virtually affects every system in the body, from pulmonary to kidneys to heart, etc, you would think they would work harder to help when symptomatic rather than waiting until damage has been done. Good luck... Hope you find relief soon!
Hi thanks for your reply my bits are not to bad as I take supplements which I think if hadn’t been They would be dismal xx and have now stopped multi vits as had biotin in them . They could be better levels but not rock bottom yet . Xx🥰
Biotin is actually good for you, but it does interfere with thyroid test results because biotin is used in the testing process and will affect results, but only if you've taken it within 7 days of testing. It doesn't affect your thyroid... Just the test results. It will cause your TSH numbers to be lower than they actually are and FT3 and FT4 to be higher. Good luck... I hope you get relief soon!
That what I was thinking after listening to all advice on here ,hopefully next nhs bloods will show as the last good few test have always taken biotin in vitamins now take selenium magnesium zinc and Vit d3
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