I keep on reading posts of people suffering with hypothyroidism and Hashimoto's, whom have been diagnosed with CFS, ME and having really bad symptoms overall.
I just wonder if the fatigue, pains etc are due to bad management of their illness by the doctors.
Are you all following AIP/PALEO diets and lifestyle? Are you all on targeted supplements? On the REALLY right medication?
My symptoms were extremely bad 5 yrs ago, but with the right treatments, I have more energy and I'm more active and productive that people half my age without illnesses!
There are ways to look after ourselves!
Daniela x
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Danyosu
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Welcome to our forum Danyosu and you don't state on your 'page' your history about your dysfunctional thyroid gland. Have you been diagnosed with i.e. hypERthyroidm, or hypOthyroidism. When you were diagnosed etc.
Yes, you are right in that we can help ourselves. However, in the UK because we cannot purchase 'over the counter' thyroid hormones that can help us means that we cannot purchase our own but have to have a prescription that doctors have to sign only when we've been diagnosed and many of us can be undiagnosed, despite our clinical symptoms.
Some people who've become very, very unwell have difficulties when their replacements do not work for them. One I am aware of couldn't continue with the pain and suffering she experienced and took her own life.
We do not want this to happen and she may not have had sufficient support from the medical professionals. Many of whom seem not to be as knowledgeable as some of the members on this forum, as the majority had to research to find their way forward to good health. They are now on this forum giving advice of what helped them to recover and the majority are not medically qualified but know more through their own sufferings on the way to good health.
Yes I managed to be diagnosed, after suffering a lot. I was diagnosed with hyperthyroidism and Hashimoto's. I ONLY take the medication prescribed to me.
I didn't even know you could buy your own till you mentioned, and I'm appalled, as that must be very dangerous.
And despite finding a really good Endo, I too had to do a lot of research by myself.
And btw I did NOT manage to be diagnosed in the UK, despite having lived here for over 30 yrs. The GPs I saw dismissed everything I was saying and they were considering me paranoid. I went privately in the UK to see an emeritus professor of endocrinology, who also lectures at Uni, who was worse the all the GPS I saw. He dismissed completely everything and said I was fine: no labs, no checks, he just said I was fine. Despite me feeling like death, no kidding. I mustered all my strength, which at that point was next to nothing, I went to Italy and literally my life was saved. BTW my sister and I guessed it was a thyroid problem, because the GPs in the UK thought it could be depression: I was offered antidepressants. Or menopause and they offered HRT or they said psychotherapy was another road to take. .... well I'm sure psychotherapy would have SURELY treated that 🙈
Sounds like the best thing we could do to treat our thyroid problems is emigrate to another health care system - which although hugely appealing to me right now, unlikely to be an option for the vast majority of us!
"I was diagnosed with hyperthyroidism and Hashimoto's."
do you mean 'hyperthyroidism' as in Graves Hyperthyroid (caused by TRab antibodies)? .... or just a period of 'Hyper' (but with less high fT4/3 than Graves) which is common at the outset of Autoimmune hypothyroid and occurs sometimes during progression of it each time a bit of thyroid tissue is attacked by the immune system?
"I didn't even know you could buy your own till you mentioned, and I'm appalled, as that must be very dangerous".
Well ... it's appalling that we can't have easy access to the full range of perfectly safe thyroid hormone replacements. so that we can balance our T3 and T4 if we need to instead of just having access to T4 alone ............... but i don't think it's 'very dangerous'.........
unless it's approached without caution and doing enough research first to understand what you're doing and you monitor the results via blood test with an awareness of the symptoms of overmedication.....
..... but most things you can buy over the counter in the chemist could be very dangerous on that basis... you can kill yourself very effectively with paracetemol if you ignore the advice given and don't read the packet.
Presumably if you had difficulty getting diagnosed in UK ,your TSH was not very high ? since that is often all they look at (!) .. was your Hashimoto's confirmed by high TPOab/TGab . or did you find evidence of it on a scan (not every one with hashimoto's damage seen on a scan has raised antibodies)
"I ONLY take the medication prescribed to me"
many people on here would be made /kept very unwell if they only followed advice from their Doctor /Endo on dose /type of thyroid hormone replacement..Since many GP's /Endo's refuse to consider anything other than TSH when adjusting dose.... So unfortunately if you don't have funds to go elsewhere , doing ONLY what you're told can be pretty dangerous too
Sorry, it autocorrected, I was diagnosed with Hypothyroidism. And yes, my antibodies were slightly raised, still my symptoms were atrocious. I wouldn't expect GPs to diagnose nor understand, but the problem is that they completely dismissed my symptoms and they usually serve as gatekeepers and refuse to refer on. Also the Emeritus Profess of Endocrinology, whom I saw privately in Guildford and paid a lot of money to, via my medical insurance, was an absolute waste of time. He had no clue what to check nor do. That I find ludicrous! So I was completely on my own. It's scary that the system to which I paid tax for over 30 years, couldn't give a hoot! And nothing could be done privately in the UK, despite paying privately for my medical insurance!Now I'm on t3/t4 medication (natural desiccated thyroid hormone, made to order from a German compound pharmacy, from a prescription by my Italian Consultant).
Yes, I only take medication prescribed to me, like the thyroid meds above described and bioidentical hormones. Most of my supplements are given to me by my Consultant and sometimes I do take some supplements by myself, after careful research. I do feel sorry for anyone who has thyroid issues, as it's misunderstood and untreated too often
lol ..autocorrect... has a habit recently of turning 'under medicated thyroid' into 'under educated thyroid'.. so it's not just you
I didn't realise you could get NDT made to order from compounding pharmacies . i though it just came in whatever the ratio of T4:T3 the pig had.. do you mean you have a different ration of T4:T3 to 'normal' NDT ?
Good question, I don't know if it's a different ratio, will check with my Consultant. I only know that initially I was on Levo for about a year, but as soon as I changed meds, my life got so much better! I also follow a fairly strict Paleo diet and have been for the past 5 yrs: game changer!
I'll have to look, but from memory they were both slightly raised. Say for the sake of saying that the top of the range was 20, mine were just about 25 ... what I mean is that both antibodies were just above the top of the range. But it's not just about numbers, it's about sympoms. Also range means little: apparently the NHS' range has not been updated for far too long, while in Europe they have moved on, with science. And one thing is being within range, another is being optimal.
Do you have a good link to AIP/paleo information you can recommend for Autimmune Hypothyroid people ....that isn't 'facebook'.. i haven;t got an account and i don't want one
I do speak Italian (in fact I speak 5 languages). I had to guess by myself what was wrong with me (my sister helped me to brainstorm) and then she found a specialist in Italy. He was very good, and no word of a lie, saved my life. I'm no longer with him, as I think I found someone even better. A friend of mine, who has lived most of her life in the UK and like many of us, was left to rotten here, went back to Germany (she's German) and was diagnosed there, by her mother's GP! I really don't know what to say ... some doctors abroad spk English and do Skype/Zoom consultations
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