Is there any normality after a thyroid diagnosis???

[Starskyboots]

I'm new to this website, & have joined in the hope of developing my awareness of my thyroid condition (underactive hashimoto's) & to try & learn why the majority of Dr's aren't sympathetic in wanting to treat this condition, & my battle with trying to get T3 prescription processed by my Dr's surgery from my endocrinologist!

[Had-enough]

It's a new normal you have to reluctantly get used to. I can't remember the last time I felt my old normal well self and I don't suppose I ever will again.

Well that a cheery thing to say this Easter Sunday, but for a lot of us it's a case of being grateful we've managed to get through the day without feeling too rough. Others have managed it and got their medication working for them, unfortunately I haven't.

[humanbean]

why the majority of Dr's aren't sympathetic in wanting to treat this condition

They were all taught that hypothyroidism is easy to diagnose and easy to treat. All they need to know is that TSH is in range - and some of them think being just a bit over the range is no big deal either.

When patients come along and challenge what they have learned, and particularly when those patients are mostly women, it makes doctors angry, because they think female patients are hypochondriacs, attention seekers, depressed, anxious, mad, time-wasters and liars.

my battle with trying to get T3 prescription processed by my Dr's surgery from my endocrinologist!

Last time I checked T3 cost the NHS about £250 for 28 tablets. If you go to other countries it costs a tiny fraction of this, it is only in the UK this daylight robbery is allowed to happen.

As a result, rather than find a new supplier (because the NHS doesn't do that), most CCGs have banned it. Even if the CCG hasn't banned it GPs won't prescribe because the cost comes out of their drugs budget, and they think it should come out of the endo's budget.

[SeasideSusie Remembering in reply to humanbean]

Sad but so true

[JAMuir in reply to humanbean]

Dr. Toft, in Edinburgh, has said that most people that still have symptoms can be put on a lot more t4 then they are prescribed. He suggested that route because the t3 is so expensive. He also said it isn't always easy to find a doctor to do that as they refuse to work outside the "guidelines".

[humanbean in reply to JAMuir]

I think that will just end up with the person having lots of reverse T3, and people with lots of reverse T3 don't generally feel well as far as I know.

[Raventhorpe]

Hi starskyboots welcome to the world of thyroid, it sucks to be honest. Last time I felt any thing like normal was over 7yrs ago before I had RAi when I had a thyroid gland. You have to fight for everything, even if you do reasonably well on levo it's a fight to get the right amount given you. We seem to pay out for everything,private bloodtest so you can see where your t3 levels are as NHS don't want to do it cause it costs too much. Vitamins as gp's don't understand about us needing our levels to be optimal so that our meds work properly, and they won't give you t3 as it costs too much.but on the bright side at lest we've got this forum of lovely people to help us through.

Linda xx

[humanbean]

Some things that patients in the UK are often not aware of - in random order as they occur to me :

1) Thyroid meds - Levothyroxine (T4), Liothyronine (T3), and Natural Dessicated Thyroid (NDT) can legally be bought without prescription in some European and other countries, and imported into the UK for personal use.

2) NHS prescriptions and private prescriptions from the UK can be used to buy thyroid meds in some other countries, and if you have such a prescription it gives you extra choices compared to buying without prescription.

3) People are legally entitled to get copies of their medical records and blood test results under the terms of the Data Protection Act 1998. Doctors can charge a fee, but they aren't supposed to make a profit out of it. Just viewing your records and taking your own notes is free.

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

nhs.uk/chq/Pages/2635.aspx

Some surgeries - but so far not very many - allow people to view blood test results online. See this link :

nhs.uk/NHSEngland/thenhs/re...

If you have to rely on viewing your records in the surgery or getting copies printed, bear in mind that receptionists always have to ask a doctor for permission to print results out. Always take proof of identity with you. Make the request at times when the surgery is likely to be least busy. Expect to make the request one day and get the printout the next. Be polite.

If you want to get a copy of your entire GP record (always worth doing in my opinion) the most that can be charged is £50.

4) If you get copies of thyroid function tests (TFTs) and nutrient testing you can copy the results into a new post and ask for feedback from members. Make sure you always get reference ranges, not just the basic results. You have a huge pool of experience to draw from on this forum and we may be able to help you find out how to make yourself feel better.

[diogenes Remembering]

Until such time in the future when a neat little pump could be attached direct to your veins to flexibly supply thyroid hormones at the level and rate you enjoyed when healthy, the answer is regrettably no. When your thyroid is working, second by second it is adjusting to your body needs as required. It produces both T4 and a smaller amount of T3. This T3, and the T3 that is produced from T4 by your body's conversion of T4 together define your personal healthy state. When the thyroid stops working, all you can presently get is a crude once a day uptake of T4 by tablet or perhaps a less crude but still imperfect several times a day/T3. There is no subtlety in medication: T4 comes in 25 ug stages or T3 also in similar stages. Unlike the direct supply of thyroid hormone into your bloodstream when well, dosing of T3 or T4 by mouth has to pass through your digestive system before it can enter your body. Thus, what you have or are eating can interfere with the uptake of hormones. Put simply, the paths in blood by which you received hormone in health are not the same route as in disease, and compromiss have to be taken with present oral routes which sadly means not the same minute by minute effect as it was when the thyroid was healthy.

[SeaVee79 in reply to diogenes]

Thankyou for that reply Diogenes. Things make more sense.

Chloe

[endomad]

the last 2 years have been up and down for me. I have great days, ok days and bloomin awful days. I I am nowhere near back to the old me, i am better but not regained my strength or fitness. I cant find a trigger or common reason, so i just roll with it. I am lucky and live in france half the time, i have no problem getting t3 in france, over the counter or with english prescription, costs 3 euros 30x25mg cynomel.

I gained a lot of weight, still get pain and tiredness, i hope one day i will be back to sports and full health but i have to accept i may not. This is a very annoying illness and we are all different. I only know one person who is back to normal but they were treated within months of becoming hypo, lots of us take years to get diagnosis. xx

[Manz123]

Hi and welcome, I think it really does depend on who you ask. I have Graves Disease and am currently on Carbimazole to treat the second occurance of my thyroid becoming overactive. I haven't felt normal since the before the first occurance in 2013.

I am really focused on being positive about my condition, finding out what I can do to help myself and keep myself well and for that, this forum is invaluable. I have to keep telling myself that it will get better otherwise I really think it would sink me, feeling like this plus the side effects from the medication.

However, I think it is worth bearing in mind that people that are fine with their medication / condition would not be as motivated to find a forum and comment on how normal they feel, as people that are not getting support from gps and feel crap, therefore you are not getting a full representation here necessarily.

I have a friend with underactive, she is on levo and says she is fine. I really struggle to believe that, as my experience with doctors, medication and endos have all been pretty much universally negative. However, that is what she says and she seems fine with energy/ mood etc.

For me, it is a case of eating well - no gluten, no milk, as little sugar as possible - and looking after myself in general. All these things help and hopefully there will be life after Graves for me.

[Rapunzel]

Is there any normality after a thyroid diagnosis???

Some manage normality and that's important to note. Others become so ill by following their medical adviser's protocol, they are wheelchair bound for the rest of their wretched lives. I absolutely believe that this is largely the result of an antediluvian and dogmatic approach adopted by the majority of the medical profession, added to the fact that this is predominately a woman's illness. Many in the profession could have their photograph taken and parked under the dictionary definition for 'misogyny'. Then there is the influence of big pharma with its one size fits all T4 'solution' and the over reliance on the 'science' of the TSH test.

We are so fortunate these days to have the means for our cohort to communicate with each other. Many of us, whilst aware we're not enjoying the normality we enjoyed prior to diagnosis, are at least better than we were, taking T4. The majority of us are allegedly well and enjoying normality through taking T4. For the rest of us it's a tough slog in a world which mostly refutes our continuing symptoms where we are 'in range'.

If you are reading this in the early stages following diagnosis, forge on; the statistics suggest that you will eventually alleviate your symptoms and recover your normality. Otherwise, there are wise words ( and regrettably, some utter balderdash ) within Health Unlocked and it may just be your salvation. Good luck.

[Starskyboots]

WOW! Thank you all soo much for your replies!

I have lots of homework and reading to do now, which is great! I thought I might get a couple of responses, but am really touched with the awesome advice, recommendations and things to look into etc....

Thank you all soo much - just knowing this support network is here and accessible is an invaluable tool.

;o) xx

[Cloverbelle]

I think you can feel normal! My wholehearted belief is that parasites are a major culprit to thyroid dysfunction. I know I had parasites and didn't even realize it! They were killing me and it the process clogging my liver and then in turn, disrupting thyroid function!

I HIGHLY RECCOMEND A PARASITE CLEANSE. Then after that food grade diatomaceous earth for 3 months or more if needed. You will start to see a change in the way you feel. I also reccomend activated charcoal.

I have done all of these things and now I am fasting (I don't recommend fasting until after a cleanse) but I fast until 5 everyday and eat a piece of fruit then dinner. It is starting to change my life and actually lose some weight, slowly but surely I am finally starting to see a change which I never thought I would. I also don't want to forget to add ... I've been taking communion everyday like I would medicine, this has helped me focus on healing instead of frustration of a disease.

I should also add, I am not on any thyroid medication. I was for a little while and it did nothing! I've focused on clearing out my liver, that's where the real culprit lays hidden!