Finally a diagnosis

After more than a year of self medicating with T3 my doctor has diagnosed me with UT and tomorrow I start on 50mg of Levo. Apparently the T3 has had no effect whatsoever (do I have absorption problem?) When I started T3 my TSH was 5.8 (or there abouts) and today it is 36 (0.27 - 4.20) also discovered I was born with a faulty gene which means I was born with high cholesterol (Familial Hypercholesterolemia) so that means I will probably need to be taking 2 different statins for life. Hey-ho here we go....

On the bright side at least the NHS is funding my treatment so lets hope we can get it sorted.

41 Replies

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  • Oh dear, duck! (Statins provoke a lot of heated discussion here. )

    Maybe do a little research and hammer out an agreement w your gp about the statins. You may find once you're optimally medicated for hypothyroidism that your cholesterol levels out (idk why they don't know or think of this but they don't). Use of statins in women is v controversial as it doesn't prevent a lot of the events you're trying to avoid (heart attack, death). well.blogs.nytimes.com/2014...

  • I know but unfortunately with my faulty gene I can't see that I have an option. :/

  • I'm not sure what you mean.

    I think if w your faulty gene statins can be shown to prevent cholesterol-related events then by all means it is a good choice. (Tbh I fear the studies are on a cross-section of folk who don't know if their genes are faulty or not so Idk if it is more or less or just as effective if you have a genetic issue.) If it is no help then maybe rethink it.

    Certainly the logic would be that faulty gene or not, those subject to high cholesterol (for whatever reason) are being given statins to keep their cholesterol down. After all it is not the gene, it's the cholesterol that creates the problem.

    In any case, I'm not advocating against statins as much as I'm saying it's best to weigh up the pros and cons (esp if you have side effects) for yourself. I too am up against it as my gran suffered for years w TIAs (and eventually dementia) as a result (we conclude for now) of sky-high cholesterol and my mum (who is a tiny slip of a thing who exercises regularly) also has it so I anticipate this decision in my own future. :-)

    Good luck w levo. How much t3 were you taking?

  • I promise I will read up more on the use of statins before taking anything. I was taking 75mcg T3 daily as when I went above that dose I got really painful leg muscles so had to reduce.

    Thank you for your response. Loraine x

  • Bless you I got distracted by statins. Apologies. :-)

    I do wonder how your tsh could be so high on a dose of t3 such as you were on. Any chance they will check your pituitary or hypothalamus? I wonder if there is more here than is obvious from a thyroid perspective. At the very least I'd want to be referred to a good endo.

    Do you have any other observations about what it was like to be on 75mcg t3? Any changes from your previous state? Did/do you have hypo symptoms (aside from high cholesterol) and if so were/are they relieved on t3? Any hyper symptoms on 75? Did your doctor know you were self-treating?

    One thing is fairly certain: 50mcg levo is *not* going to be more effective than 75 t3 (roughly equivalent to 225-375 levo). From this dose am I right to assume your gp doesn't know you were self-treating?

  • Hi, tell me please , what kind of tests for pituitary and thalasmus. I would like to check my

  • Sometimes if thyroid tests results are unexpected like this you may look beyond the thyroid and at the pituitary and/or hypothalamus (sorry, should say hypothalamus above, I will edit. I must have got tired of typing 'hypo' lol.). An mri would tell you if you had a pituitary tumour for example.

  • Doctor knows I was self medicating as I told her but seems it wasn't doing any good :/ though she didn't know before last week as I did'nt need to go to the surgery for anything other than heartburn and it was then I asked if she would test my bloods as it was more than a year since the last ones. I suffered with what I call air hunger (couldn't seem to fill my lungs with oxygen) light heads, memory lapses, anger and unexpected weight gain plus terrible heartburn. All disappeared after starting T3 except the weight (kept going up) and the heartburn. I never felt cold or ill except when I over medicated T3 and then my thigh muscles became very heavy and my legs ached so I cut back to 75mcg and that seemed okay. I'm going for Thyroid panel blood tests and tests for liver & kidney function also an ultrasound scan so hopefully will get more answers soon.

  • Ok, and you were on 75mcg t3 when when your blood was drawn?

    What does gp say about your tsh being so high on this dose of t3? I can't imagine why she'd put you on 50 levo. Has she explained that? Is there a plan to retest within 6wks? I fear it may be a bumpy ride coming off t3 onto that tiny dose of levo.

    Have you got the TUK endo list? As much as I am not a fan of endos I feel like this is a good case for referral.

  • I have a re test in 6 weeks but seeing the doctor again next week for a talk about liver function, cholesterol etc. I will look on TUK page for list of endo's. Many thanks, Loraine x

  • The statins won't address your faulty gene; they will only address symptoms of high cholesterol, whether caused by a faulty gene or any other cause. I agree with punctured bicycle that you should read up. Also, perhaps check out things written by Loren Cordain (The Paleo Diet) and Chris Kresser. Best of luck!

  • You might find this interesting:

    zoeharcombe.com/2016/11/fam...

  • Very interesting reading Jazzw thank you for sharing. I shall definitely be asking the doctor a lot of questions before settling on any statin treatment.

  • stig5882

    Given the bloods that you had done last August and the resultant retest showing a suppressed TSH and much improved (in fact a little over range ) T3, I am surprised to see that you write that your intervention self medicating with T3 has had no effect whatsoever. Can I take it that the 'apparently' is from your GP ? In your shoes I wouldn't be very happy, because s/he sounds remarkably, although commonly clueless about hypo.

    This is my opinion - I have no health qualifications but two degrees - yet unlike your GP, I don't have to be a jack of all illnesses, calamities and conditions, just not talk out of my bottom about UAT - my condition, which your GP spent an afternoon learning about in her six/seven year internship. Furthermore I don't doubt that your GP will struggle to answer many of your questions about statins. Dr Malcolm Kendrick could answer a few and I suggest you google his thoughts on the subject.

    For some of us, Levo is no use at all. I could have it free, of course, being hypo. I wouldn't touch it with a mile long barge pole because on it, appreciating I'm one of the minority who feel this way, I wanted to die, put on more than three stones in weight and each day was a mountain to climb in so many different, awful ways. I pay for my own meds and my own blood tests. I'm not great but I'm better than OK.

    I'm angry. For you. Please tread carefully and review what you've learned about your illness here and elsewhere before committing to 'doctor knows best' paradigm. In my particular case, doctor knew jack sh*t and very nearly killed me.

    Best to you in your search for good health x

  • Yes it was my doctors 'apparently' I am waiting 6 weeks for a full thyroid panel to be done but the blood test just done also had a serum free T4 level of 4 pmol/L (12.0 - 22.0 )

  • Your T4 will be low because you're not taking any T4 and that would be not ideal but to be expected as you're hypo. T3 is the active hormone... you have done more good than harm in self treating IMO x

    It's such a relief to get diagnosis isn't it but this particular diagnosis isn't one I would wish on many ; ( :P ) because it is mistreated / untreated / undertreated to the point of casual and routine sadism, in my view, but then I'm just a patient what do I know ?

    Post a new thread asking for help with your bloods when you get them through and let the wise ones on TUK loose

  • Thank you for your input of which I am so grateful. I will indeed upload all results to the forum and look forward to hearing all opinions as I know and trust the many members here will help to keep me on the right track and as you said it is a relief at last to get a definitive diagnosis but I know that doctors know little about the thyroid, so I hope to be able to use the knowledge gleaned from this site to help me fight my corner in the pursuit of good health.

    Thank you... Loraine x

  • I agree with others after a lot of suffering and trail and error. T4/synthetic thyroid hormones like Levo are horrible. Please look into NDT medication, with both T3 and T4 hormones. Great resource at: stopthethyroidmadness.com

    Take care!! 😀

  • Thank you x

  • Have you read the well known books like Stop the Thyroid Madness?

  • I haven't as yet, I have a book called The Autoimmune Solution just haven't got round to reading it yet but I will over the holidays. :)

  • You'd have a low FT4 if you are taking t3, so that's to be expected, but the high TSH is not usual. Did they test FT3 - I bet they didn't.

  • No not yet but going for a full thyroid panel next week.

  • You were on 75 mcg T3 only, and your TSH went from below 1 to 36? Is that correct?

    Did you stop taking the T3 before the test? If so, for how long?

    Were you taking the T3 correctly? On an empty stomach and waiting at least one hour to eat or drink anything other than water; two hours before other supplements or medications; and four hours before iron, magnesium, calcium, vit D3 or estrogène?

    Did the doctor actually test the FT3?

    Have you been tested for Coeliac? Or Hashi's?

    Sorry for all the questions, but there's something that doesn't add up, here. :)

  • I stopped taking T3 for a week before the test as i was on holiday and though it would be better to get all out of my system to get a true look at what was in my cells.?????? I felt okay during the week except for craving sugar. :/ Full tyroid panel test to be done next week.

  • Well, you wouldn't get a look at what was in your cells, would you. A serum test just tells you what is in your blood.

    It would be very unlikely that your TSH would go up that much in one week. So, there's something else going on that we've missed...

  • Absorption problems maybe? Anyway I will know more after next lot of tests when they will be testing for vit D , Calcium/ Albumin, CRP, Gamma GT, Liver function Profile, Phosphate,ESR & F Blood Count.

  • But will they be testing the FT3? That is the most important number, and that will show if there's an absorption problem. The TSH is too unreliable.

  • Am seeing the doc again next week and I will ask about FT3 etc.

  • Ok. :)

  • UT,idk,Tbh,wTIAS,UAT,IMO !!

    Please an end to this shorthand .Have been such requests before.Worked out one but rest a nystery to the befuddled.

  • Underactive Thyroid

    I don't know

    To be honest

    wTIAS??? (no idea!!!)

    Under Active Thyroid (the more usual form)

    In my opinion

    Hope that helps. lol

  • wTIAS = with Transient Ischaemic Attacks

    There are far, far too many abbreviations and acronyms in medicine in general. For a non-medical audience (however well self-taught!) their unfamiliarity makes it even worse. It isn't even easy to distinguish specific medical terms from general chit-chat, txtspk, or other linguas.

  • Well done gg always count on you :)) another gold star for you lol

  • lol Thank you. :D

  • Treepie sometimes I come across stuff here I don't understand so I google it. Or I politely ask the person who posted it. Or I click away and read something else. Generally it is not an attempt to make everything difficult for you personally, but perhaps an attempt to get a lot of info across in a small space.

    There will continue to be 'such requests' I'm sure. It is a perennial subject. I'm not sure why one doesn't think to ask the person who has used an abbreviation w which one is not familiar.

    When the Abbreviation/Acronym Police rise to power I do hope their every last word is fully spelled out to perfection because it won't just be imo and lol that will be prohibited, it will be mU/L and ng/dL and Ft4 and Rt3 and tt and mcg and tsh and nhs and TUK and HU and admin etc etc. So sharpen your typing fingers folks. :-)

    I'll be fine in the New World Order. I have a lot of spare time. :-)

  • TIA. ; Transient Ischemic Attack, ( mini stroke)

    w Tias ; With Transient Ischemic Attacks

    J 👍

  • Statins deplete the body of CoEnzymeQ10. Body needs CoQ10 for energy, heart function. The muscle aches are one early sign of depletion. Need to supplement CoQ10.

  • Thanks anncr will keep that in mind. x

  • Make sure your endo tests you for the various types of thyroid antibodies. Your TSH going up while on T3. Not a good sign. Have your adrenals and pituitary checked, too.

    Reading the autoimmune book sounds like a good idea. And going on an autoimmune Paleo Diet. As well as looking for other food allergies beyond gluten.

    And, statins have not been shown to help women of any age. Cholesterol is used to make all your hormones. Pregnenolone, progesterone, cortisol, DHEA, testosterone, estrogen, all needed by your body. Statins can alter a delicate hormonal balance. They also deplete you of CoQ10, needed for your mitochondria to make energy.

    Also, how's your gut health? A leaky gut can be the root of many health problems. Might be worth checking out.

    Best wishes to you on your journey.

  • Thank you so much xx

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