Dont always assume its your thyroid

Hi, been hypothyroid for a couple of years now and have recently self medicated as despite being told frequently that i am adequately replaced i feel totally drained. However, like a dog with a bone i refused to give up and was given. A second referral, this time to a brillaint endo who really listened, did a full check up and brain scan and concluded that he suspected a sleep disorder. After completing a sleep study i have now been told i need a CPAP machine for sleep apneoa. I am dreading using one of these, however i appreciate that it could be a lifesaver, and remain grateful that somebody took me seriously. My gut reaction is that they, the GPs, will realise it's'not all in my head! I am really hopeful that this will give me back some quality of life as i shouldnt feel 60 at 48 - and i encourage all of you who arent being heard to dig your heels in and insist they listen. It's'disgraceful we have to be like this, and it's'easy for us to blame lots of symptoms on one condition, but sleep apneoa is something which goes hand in hand with hypothyroidism - make sure they dont miss it with you too! And dont assume that you wont have it if your a healthy weight - iam a size 12, dont drink or smoke, and i have it. Just one more thing to check....

6 Replies

  • The private endo I am seeing for parathyroid problems mentioned this, not something I have taken further yet but certainly will once current issues are sorted.

    Interesting post and just goes to show how wrong it is to lay all the blame on thyroid.

  • Hi mandy, I agree with so much of what you are saying. When finding the solution to thyroid problems is not as straightforward for some as for others we must push, push, push to find the right answers.

    We hunted long and hard and went down many dead ends before finding what was at the bottom of my daughter's thyroid failure (in her case mould biotoxins, long standing stealth viruses and Lyme Disease). These dead ends included trying every thyroid replacement known to man it seems, countless and often high doses of various adrenal supplements and vitamin and mineral supplements. Whilst T3 helped her the most it wasn't until we found a brilliant doctor who was prepared to dig deep and find the underlying causes that we even discovered why she had a thyroid problem.

    Yes we MUST be persistent and always keep an open mind. The sad thing is that we as patients and parents of patients have to be the ones to do the detective work and the chasing.

    I truly believe there is an answer for everyone if we are prepared to do this work ourselves.

    Jane x

  • Thank you for posting this Mandy, it is encouraging you have found a good endo (although sorry you have sleep apnoea, however a diagnosis is a step to feeling better). I personally know 2 people with this condition, both hypothyroid sufferers too.

    I agree we should not accept we are 'adequately treated' when we still feel ill, not accept to be treated per blood tests and not give up trying to find out why (even 'tho we tend to be too tired to push for answers). Unfortunately this is what happens as treatment tends to be by specific body part/area (and treatment if you are lucky!) but the cause is not investigated - I suppose GPs just don't have time, they are looking for 'acute' symptoms not 'chronic' - but we must make the time and investigate how to feel better, it's our lives on-hold.

    In my case after a partialT op and blood tests within 'normal' levels (last TSH 4.57) means it must be CFS/ME and 'depression', so offered ADs. (I do not accept this as correct). Meanwhile I have investigated deficiencies in vitamins/ minerals like irons etc. to try to optimise my health and found out I was low in Vitamin D (supplementing helped ease joint pain etc) and possibly low in B12 too (investigating as symptoms match my nerve/memory problems). There are many avenues to investigate why the thyroid is affected, and knowledge is power. You can see from 12000 plus members and diverse posts on this site that folk are questioning why and sharing experience.

    Best wishes Jane :D

  • ME = Multi-Endocrine disorder = "we know it's your thyroid but we can't be ***ed to treat you properly - ***er off and have a nice life. Good bye."

  • Or:

    We know your thyroids probably involved somewhere but as it's 'Sub Clinical' to us [ie: we don't feel a thing in our NHS guidelined selves] we don't want to get into troubled waters where we might incur a lot of expense- and even have to take up off site expensive specialists in order to get a decent drug [T3] to even trial for you.

    If this makes you sad- we have some nice SRIs that will help.

    If you refuse to believe, something may be written down on your notes that may make another Dr think the same...

    Have a nice day. Ching!! Next.

    [*** Apologies to the many caring ,but hands tied, GPs out there]

  • Exactly I agree tegz, I read the other day that doctors actually get bonuses for dishing out antidepressants and statins, no doubt for dishing out the cheap uneffective (for many) Levothyroxine only. After all it only cost a mere £1 or so per box, nice and cheap that should work for all (not), it's almost like going into a shoe shop and asking for a size 6 shoe and the shop assistant saying no but we have that particular brand in a size 5 I am sure it will do just as well. Just like HRT not all suit all women, you have to shop around, trial and error to find the right one, isn't that what being individual is all about. I do not rely or trust blood test's anymore, I listen to myself, my own gut feelings and signs.......

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