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Underactive thyroid help!

Posted , 10 users are following.

Rachel-95
Rachel-95

Hi there smile

My GP diganosed me with an underactive thyroid about 2 years ago (after I asked for the test) and for about the past 6 months I've been exhausted! 

I asked to have an FBC, thyroid levels checked etc. and everything came back in the "normal" range. 

It is really starting to take a toll on my life! I sleep around 8 and a half hours a night and wake up feeling like I've had about 4 which doesn't put me in a good mood for work and on the weekend I would rather sleep than go out which is really bad for someone who has just turned 20!

My doctor has made me feel like a hypochondriac or that they think it's all in my head which I have seen ALOT of online so I feel better knowing it isn't just my GP.

I'd really appreciate it if anyone could suggest what to do in terms of other tests, refferals or how to cope at least as it is making me feel awful! I eat healthily and excersise regularly, I am happy on the whole apart from being so knackered ALL the time!

Thank you in advance!

0 likes, 18 replies

18 Replies

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  • kimberleyb
    kimberleyb Rachel-95

    Posted

    Hi Rachel,

    Having suffered from Hypothyroidism for the past 2 years I know exactly how you must be feeling when told by your GP that your blood test results are fine, but you need to keep insisting that they need to look further.

    I would advise you to read the information on hypothyroidmom which details others sufferers experiences, research that is being undertaken in the USA (which is much further on than in the UK) and provides advice about controlling your condition with diet etc.

    Hypothyroidism can be such a debilitating condition, especially when you are told your results are fine.  It is a condition that runs in family's, so do your research to see if anyone in your family including aunts etc have or do suffer.  1 in 50 women suffer from Hypothyroidism, so there is a very good chance that this is Try also looking on thyroid uk as this is also a very good website, which also lists doctors in the UK (and in this area) who specialise in Thyroid conditions.

    Good luck with your research, please let me know how you get on?

    Kim

  • barbara98940
    barbara98940 Rachel-95

    Posted

    Hi,

    Have you had your Ferritin level checked in any of the blood tests you've had done? I was told by my endo that to be able to absorb thyroxine your Ferritin level needs to be >50 else it affects the absorbtion of thyroxine (i.e. it stays in your blood and gives incorrect T4 / TSH blood test results).

    My experience may help to give you an idea of T4 (thyroxine) dosage and TSH levels. My thyroid has completely failed. In 1991 when my hypothyroidism was diagnosed, the consultant said he had never seen TSH level so high (TSH=175.) I take Levothyroxine (T4) of 150mcg in summer and 175mcg in winter. Previously it was 25mcg higher, then I found out I needed to take thyroxine in the morning at least half an hour before food (preferably one hour, some people say 2 hours), and not take calcium, iron, or magnesium medication within 4 hours of taking thyroxine.

    To not feel like a zombie my TSH is now consistently <0.01 (i.e. too low to be measured). my endo explained the risks of having the tsh 'suppressed' in this way (risk of erratic heart rhythm and oesteoporosis being the two main ones) then accepted my decision to stay on this level of thyroxine. i do though have low blood pressure, a normal ecg result and an excellent bone density x-ray result, and i am taking a calcium tablet each day to try and mitigate the oesteoporosis. i will probably have to re-evaluate the decision to take extra thyroxine when i get older and heart rhythm problems are more of a risk.

    i also have seasonal affective disorder (s.a.d) which means i need 25mcg more thyroxine october to april.

    it's complicated. it's not surprising gps struggle with it - even some endocrinologists do. over the years i've found that the medical advice has changed, now at least there is recognition that 'a significant minority' don't fit the standard advice and blood test levels.

    the other thing is that in my experience it takes 3 months after changing levothyroxine dose before tsh readings are accurate (doctors use 4-6 weeks, presumably so they get an early iindication of whether the dose needs changing).

    are you also following the discussion on 'levothyroxine sodium'?. (i.e.="" too="" low="" to="" be="" measured).="" my="" endo="" explained="" the="" risks="" of="" having="" the="" tsh="" 'suppressed'="" in="" this="" way="" (risk="" of="" erratic="" heart="" rhythm="" and="" oesteoporosis="" being="" the="" two="" main="" ones)="" then="" accepted="" my="" decision="" to="" stay="" on="" this="" level="" of="" thyroxine.="" i="" do="" though="" have="" low="" blood="" pressure,="" a="" normal="" ecg="" result="" and="" an="" excellent="" bone="" density="" x-ray="" result,="" and="" i="" am="" taking="" a="" calcium="" tablet="" each="" day="" to="" try="" and="" mitigate="" the="" oesteoporosis.="" i="" will="" probably="" have="" to="" re-evaluate="" the="" decision="" to="" take="" extra="" thyroxine="" when="" i="" get="" older="" and="" heart="" rhythm="" problems="" are="" more="" of="" a="" risk.="" i="" also="" have="" seasonal="" affective="" disorder="" (s.a.d)="" which="" means="" i="" need="" 25mcg="" more="" thyroxine="" october="" to="" april.="" it's="" complicated.="" it's="" not="" surprising="" gps="" struggle="" with="" it="" -="" even="" some="" endocrinologists="" do.="" over="" the="" years="" i've="" found="" that="" the="" medical="" advice="" has="" changed,="" now="" at="" least="" there="" is="" recognition="" that="" 'a="" significant="" minority'="" don't="" fit="" the="" standard="" advice="" and="" blood="" test="" levels.="" the="" other="" thing="" is="" that="" in="" my="" experience="" it="" takes="" 3="" months="" after="" changing="" levothyroxine="" dose="" before="" tsh="" readings="" are="" accurate="" (doctors="" use="" 4-6="" weeks,="" presumably="" so="" they="" get="" an="" early="" iindication="" of="" whether="" the="" dose="" needs="" changing).="" are="" you="" also="" following="" the="" discussion="" on="" 'levothyroxine="">

    i also have seasonal affective disorder (s.a.d) which means i need 25mcg more thyroxine october to april.

    it's complicated. it's not surprising gps struggle with it - even some endocrinologists do. over the years i've found that the medical advice has changed, now at least there is recognition that 'a significant minority' don't fit the standard advice and blood test levels.

    the other thing is that in my experience it takes 3 months after changing levothyroxine dose before tsh readings are accurate (doctors use 4-6 weeks, presumably so they get an early iindication of whether the dose needs changing).

    are you also following the discussion on 'levothyroxine sodium'?.>

  • barbara98940
    barbara98940 Rachel-95

    Posted

    There is an interesting paper on The Medicines and Healthcare Products Regulatory Agency (MHRA) titled 'levothyroxine tablet products: A review of clinical and quality considerations'. Dated 7 January 2013. Essence of which is that there is evidence to show that levothyroxine can lose its efficacy over its shelf life and some people are sensitive to this variability. Also the acceptable limits for the amount if thyroxine in the tablet are 90%-110%. This explains why some people have difficulty stabilising on Levothyroxine. Then there is the added complication that some people can't tolerate some of the 'fillers' that are used. So as a minimim we need to use the tablets well within their use by date.
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