Continued low TSH - Any Advice

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Hi Group,

Following a complete removal of the thyroid gland about 5 years ago, i was put on 100mcg of Levothyroxine for which my body was content with and regualr checks of my tsh were within the normal range. Last year i started to suffer from hot sweats and palpitations/insomnia and as such concluded that i was being overmedicated which was confirmed with a TSH reading trending towards the low side of the nominal range. My dosage was reduced to 75mcg for a period and i knew i had to keep a regualr check on the results. Throughtout this transition to a new dose level, i continued to suffer fatigue and occasional muscle aches but believed i was moving in the right direction with the revised dose. A few months later my TSH level was again seen as too low and outside the normal range so my dose was reduced to 50mcg.

With a general feeling of being tired and unwell i was a patient patient and looked forward to good results and and better physical wellness in the weeks ahead. My latest TSH is again very low (0.03) which would indicate that i need to continue reducing my Levothyroxine dose. What i cant understand is that i do not have a thyroid that provides T3 and T4 and as such need some intake of Throxine to function ? My GP is a little confuse by it all  and even he advised that i stop taking thyroxine altogether !. The latest GP advice is that i remain on 50mcg and make an appointment with an Endo  for further advice in a few months time. My own thoughts are that prehaps my Pituitary gland is malfunctioning and the results are presenting false guidance with the TSH readings or that my body is having difficulty converting the T4 into T3 such that i am not receiving the T3 required to function normally and as such am feeling the side effects of that. Any feedback from those who are aware of similar situation or effects, particulalay from those who have had their thyroid removed woud be much appreciated.

Regards,

Kevin

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  • Posted

    Hi Widdzy, The TSH measurement is only a first approximation. If it is very high then yes you are hypothyridic, however, once you get to the very low levels it is not a very accurate indicator. The problem is that doctors think it is!

    My humble, nonmedical opinion is that if you get a doc who will medicate you to TSH then you will be guarenteed undermedicated and suffer hypothyridic symptoms. I say this from the personal experience (I have had a thyroidectomy) from an Endo who almost killed me trying to force this "Lower-the-T4-dose-until-TSH-increases" philosophy.

    You have to also measure your T3, this is the energy giving hormone and it is more important to keep track of T3 than anything else.

    And yes, you are dead right about the possibility of your Pituitary not secreting much TSH, once the thyroid has been removed the protocol between the hypothalamus, pituitary, thyroid and blood serum is seriously compromised and should not be taken as "gospel". It is a big subject Widdzy, keep reading, researching and fighting! your well being will depend upon it.

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  • Posted

    Oh and one other thing, when you do not have a thyroid T4 is converted into T3 in your peripheral organs, in particular your liver. Do look into conversion (low T3) first as a  possible cause of your feeling unwell. 
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    • Posted

      Hi LAH,

      Many thanks for your reply - it really is comforting to know there are others out there with experience and knowledge of this complex subject. I feel the GPs are lacking in knowledge and guidance and so i either look for an endo or the forums for help. Interestingly, i found a subject that focussed on Vitamin b12 deficiency and mirrored all f my symptoms. However one in particular i have suffered from during this period of change has been Tinittus in my ears, which i certainly never had as much as i do now. Tiredness, Foggy Thinking, disturbed sleep and hearing loss appear to be tied to B12 deficiency, which is a complex vitamin.

      Im currently abroad working and will schedule yet another set of blood tests to see where i am with it all. I know in the UK that the GP's are reluctant to give a full range of tests as they are budget bound and each test has a cost associated with it. I dont mind paying as long as i get the right diagnosis. 

      I will insist on a T3 level at next test as i i understand this is what the body needs to function efficiently. I wasnt aware that T3 was an energy giving hormone !

      The understanding is increasing, and im glad ive taken this to my own personal level rather than leavin it in the hands of the GP.

      Cheers, Kevin

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  • Posted

    Hello Widdzy:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's Thyroid disease.

    I am sorry you had a thyroidectomy.  Let me add to what others say here.

    These  synthetic's meds like Levo, are assuming you have a Thyroid to convert the drugs into useable T3. Synthetic's don't always convert well in people who do not have a thyroid. There are meds made from a pig's gland that are more like a human's gland and work better some are called NDT's,  Armour Thyroid, Thyroid- S and Thyroid W and a few others.  NHS does not support these meds I am told.  They can be bought online if you are in UK. If you are in USA, ask your Endo about it.

    Levo will have to use your Liver, intestines and other organs since your thyroid was removed.  It is harder to get the balance right due to the gland not being there. Take it in slow increments to increase and cut pills up and lower it.  Then stay at a dose for a while and each week increase it a bit.   Take Levo on an empty stomach and you should have TSH level every 2-3 months until stable.

    Let us know how you do,  Stay well.

    Shelly

     

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    • Posted

      Success of sorts finally.......

      Referral to endo in January ....ref to immunology March a tad longer than I expected .....

      I've been dairy free for 10 days .......I lapse of hives but putting it down to cross contamination.....and now getting g lactose free Levo through my doctor.......feeling relatively pleased but not about the lack of dairy :-)

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    • Posted

      Hello Stephanie:

      Good news, at least you will be seen. Ask to be put on a wait list in case someone cancels they can move you up and get you an earlier appointment.  Call and talk with the person who makes the appts. for the doctor/clinic.

      Gluten Free is available in a lot of stores and they have a lot of products now with no gluten in them.  I know how you feel about the dairy but  hives is much worse. The good thing is dairy items tend to be a cause of weight gain and stopping that will help. 

      Yes, I am glad that you can get lactose free Levo.  So keep us posted as this may help another person who may have it also.

      Stay well, Happy Holidays.

      Shelly

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  • Posted

    Hi Widdzy,  I am in a similar situation as you.  I had half of my thyroid gland removed almost thirty years ago and was immediately put onto a full dose of Oroxine - 100mcg which was to take place of my complete thyroid gland .. putting it to sleep and then living on the oroxine alone for the rest of my life.  So as like you I am relying totally on the tablet to keep me going.  I was fine on this medication.

    In 2010 I had a big operation - a hemicolectomy (removal of half of my colon) due to cancer.  All is well with that but because the operation removed part of my bowel it caused my TSH to drop to 0.08.  It had previously been 0.68.  The GP that I saw at the time insisted that my Oroxine be dropped to 75mcg.  Well to cut a long story short - after about six months I was nearly dead.  I had asked the Dr to raise the dose several months before because I was not feeling well and she flatly refused and gave me anti-depressants instead (which I did not take).

    Eventually I talked to another doctor who let me put the dose up to half way - ie. 75 one day and 100 the next.  After doing this for a while and still not being ok I put it up to 100 myself.  I have avoided having any blood tests done because I know the GP's only look at the TSH even though my T3 and T4 are fine. However last week a doctor insisted on doing blood tests and now the whole thing has started over again with low TSH and doctor freaking out and not listening to a word I say.  In fact she rang me at home and 'talked at me' not to me for quite a while.  I am very annoyed at the lack of knowledge of gp's and their failure to recognise patient's symptoms or lack of.  I could go on here ...... but I will find another doctor.  I am perfectly well and have no hyper symptoms.  They will kill me in order to keep their paperwork straight by dropping my medication and if I die they will not be held responsible because .. guess what?  I will be 'within the range'.  BTW I am extremely hypo with a TSH of 2.4 - that is what it was when they dropped my meds to 75mcg.

    Sorry for the rant .. but now on to you.  People on this forum have given you some very good advice.  It seems that from your symptoms you may be a little over medicated.  But if your dose is to be lowered you need to be very aware of what that lowered dose is and it needs to be done only a little at a time as Shelly advised, until you find a suitable dose.  The doctor I saw recently wanted to drop mine to 75mcg and would not even talk to me about any other dose - I was furious that she had not even listened to my past experience.  In your case how can you possibly live on 50mcg - I am assuming you are an adult.  And to suggest that you stop taking it at all is astounding.  Madness!  You must look out for yourself or these doc's will make you very ill.

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    • Posted

      hi Sketchy,

      Many thanks for your informative mail - Yes im an adult - a young 53 year old. What i have always failed to understand is that i survived for about 4 years feeling absolutely fine with very few symptoms and then suddenly a roller coaster of them and for which my GP has been chasing but only with reference to my blood results. I have had no lifestyle change or diet change and there just doesnt seem to be any stability about it all. I am convinced that my low TSH reading is not indicative of the Thyroxine my body needs to function well. I am becoming a believer in manageing the symptoms and side effects rather than the scientific indication of TSH, since up to this point there has been no real proof that the Pituitary gland is functioning as it should. Also i am learning to distinguish between those who still have a thyroid that isnt functioning properly and those who have no thyroid at all ! I found the Vitamin B12 article very interesting and as a side issue to my thyroid probs, am going to look into this some more. The onset of Chronic Tinitus recently has forced me to investigate further and Vit b12 (or lack of) is associated with that, and of course the lack of energy.

      Importantly i think for everyone on these forums who are affected like we are, they should take control of their symptoms and not leave the decisions around medication to their GP alone. There are lots of folk who have suffered for too long by just following the numbers.

      Regards,

      Kevin

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    • Posted

      Hi Sketchy,

      Did you ever hit the nail on the head when you said, " They will kill me in order to keep their paperwork straight by dropping my medication and if I die they will not be held responsible because .. guess what?  I will be 'within the range'.  "

      That is exactly what I think and what I almost lived in reality. My doctor screwed me up so badly on the wrong drug (a bad brand of Levo) at the wrong dose (one which made my numbers look good). It was only when I felt as if I had two weeks to live that I panicked and went to the financial office and said that I was not paying them to kill me! So, money talks (well, at lease my monthly insurance payments) and I got another doctor.

       

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    • Posted

      Hi LAHs,

      What a prediament we thyroid patients can find ourselves in due to inept doctors.  I have avoided having blood tests for two years because I have a TSH that is bordering on Zero due to having half of my colon removed.  The GP almost killed me in 2013 by dropping my meds to 75mcg from being on 100mcg previously.  Over the past week after having a blood test (should have avoided it)  I have been harassed by a doctor who insists on doing it again (even phoning me at home and bullying me).  There is no record on their computers of what they did to me before - it's 'one size fits all' medicine as far as they are concerned. But I will see a new doctor in the new year at another practice who is known to our family and has advised that I should come and see him.

      Good luck LAHs .. we have to look after ourselves in order to remain healthy and stay on our feet. smile 

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    • Posted

      Sketchy, I'm really glad you are going to see a different doctor. I too would have avoided blood tests, though it shouldn't be necessary! It's also not advisable as my experience is that hypothyroid patients need to have iron and ferritin (as a minimum) checked regularly. On the NHS form this is down as: iron & IBC, ferritin and full blood count. If you can get vitamin D and vitamin B12 checked too that would be great.

      The reason why the blood tests suggest you should be on a lower dose than your symptoms suggest, needs Iinvestigating. There are other steps in the process that might not be working correctly, specifically conversion of T4 to T3, and absorption of T3 at cellular level. Like you are doing, for years I kept my thyroxin dose higher than the blood tests suggested. I have now developed loads of allergies and intolerances that I wouldn't wish on anyone. I now know I wasn't converting T4 to T3 properly, so even on the higher dose my body was under medicated. I now take NDT and my doctor's comment last week was "you've cracked it!" (I ordered a bovine NDT classed as a 'nutritional supplememt' off the internet, because I couldn't get hold of 'proper' NDT.

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    • Posted

      Hi barbara, 

      Thanks for your post.  My situation is a bit complicated and I did not explain everything about my condition here but I am very diligent about taking my supplements and my medication at the right times etc.  I know my iron and ferritin and B12 etc. are all ok as they were checked by another doctor (the surgeon who did my hemicolonoscopy) and I keep them all well maintained.  The reason the tests show that I should be on a lower dose is that the surgeon removed my ileocecal valve so that everything moves through my system faster than normal and all vitamins and medications are comprimised by this and I am aware that I have to always keep my supplements at optimal level.  The problem comes in with medication like Oroxine - my surgeon says I may need the dose increased as I am not absorbing it all but GP's and their gold standard TSH test won't have a bar of that.  My TSH at almost Zero would plummet below if my Oroxine was increased however, I am starting to feel some hypothyroid symptoms like cold legs, brain fog and fatigue recently.  I don't think TSH is relevant to my condition since the op.  My FT4 and FT3 are always good but I would like to see if they have dropped a bit now.  I don't believe 'any' doctor can adjust my medication .. I am the only one living in this body with these altered conditions and I am the only one who knows when I am correctly medicated.  Apparently everything else on that recent blood test was ok .. it was just the TSH that the GP was concerned about.  She talked about the TSH as being the most 'important' reading on the test and dismissed the FT4 and FT3 as being not of any importance.  She would not tell me what they were over the phone.  I was soooo annoyed by her attitude - she completely dominated the conversation and talked at me and did not listen to me at all.  I am in Australia and can only get T4 Oroxine here.  I've been taking Oroxine for thirty years and never had any problems until the abdominal operation in 2010.  My TSH was just borderline even before the operation.

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    • Posted

      Sketchy, Thank you for sharing, I see what you mean about complicated. I'm glad you know the reason for the low TSH. Just a thought, can you get your surgeon to write a letter to your doctor (copy to you) about how your TSH results should be handled and how you should be dosed with thyroid hormones? Then you could produce this letter whenever they try to go against the surgeon's guidelines.
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    • Posted

      Barbara,  Thanks for your suggestion I am going to ask her about it when I see her in January.  It will be my last visit with her as it's been five years since my operation.  
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  • Posted

    Hi again Widdzy,  After reading your reply I started to ponder your situation again.  A few things that occurred to me are the following:

       You say you are on Levothyroxine - is that a generic brand?  I am in Australia and have only used the genuine Oroxine brand.  I always refuse the generic Eutrosig if the chemist offers it.  The generics can be unreliable.  So what I am saying is that it is important to always stick to the same brand and is better to pay more for the genuine.  Have you changed brands over the past couple of years?

       Also, have you had any weight loss over the past couple of years - that could perhaps have an effect on the medication dose.  1.6mcg per kilo of bodyweight is the 'general' scale used - this can be tweaked a little to suit individuals.  I weigh 60 kilo and take 100mcg Oroxine.

       The next thing is Anemia which is very common amongst thyroid patients. Especially the Ferritin level.  When the Doc does blood tests ask for the ferritin to be tested.  Anemia can cause fatigue, palpitations, insomnia.  Always get a copy of all blood tests so that you can monitor these things for yourself over time.  When the ferritin test comes back your doc will probably say it is fine - but look at it for yourself and see what your level is because the range is huge.  I have to keep my ferritin above 80 to avoid arthritic type pains.  I have no pains now. I take an iron tablet every three days.   I think the level is higher for men.  I am female btw 68 years of age and in good health - but not according to my doc. who mistakenly thinks I am overmedicated.  I have no hyperthyroid symptoms .. I sleep well and don't overheat and not aggitated unless annoyed by incompetant doctors.  lol

       Another thing to consider - has your thyroid gland started to grow back?  I have read that it can.  You could ask for an ultrasound to be done - it seems a reasonable and sensible thing to ask in your situation.

    There is a 'variable daily dosing chart' available on-line somewhere (I have a copy of it) and it comes in very handy for lowering doses over a week.  Saves cutting tablets and helps to change doses gradually.  If you can't find it on-line I might be able to send you a copy somehow.  I wonder if I could attach it to a PM!

    I hope things improve for you somehow .. keep in touch ..

       

     

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