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Continued low TSH - Any Advice

Posted , 8 users are following.

Widdzy
Widdzy

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

1 like, 24 replies

24 Replies

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  • patricia20016
    patricia20016 Widdzy

    Posted

    Your best seeing endocrinologist I've bee with them since I had a total thyroid ectomy 3 years ago I'm still not right so your best with them GP don't know that much about all the problems my GP's won't do anything to over ride the consultants good luck
  • stephanie1968
    stephanie1968 Widdzy

    Posted

    Hi

    I haven't had mine removed ...my mum has.

    Seems hypo is also carried forward by genes although I acquired it at 46 in Aug of this yr.

    I'm Hypo first reading 7.4......

    After starting on a low dose 50mcg and monthly Inrements to 100 mcg in Oct I developed an intolerance to something unknown yet....

    Hives( urticaria)... .All over excruciating at times and a tsh of 0.54 in Sep and 1.98 in Oct ...

    Each time they've said it's not the Levo

    As well as H1 and H2 blockers to reduced acid production Steroids early on......at this point no Immunologist or Endocrinologist........

    My friend is a Cealiac and from there diagnosed with Hashimotos as the underlying cause of Hypothyroidism......

    She asked me if I was hashing or graves ( hadn't got a clue what she was on about).

    She then asked me what my T3 was .....again didn't know .....but now have patient access to all my files .Which anyone can do in the UK so long as you request it.

    This hadn't been tested .....

    I have pestered the docs literally

    Tested T3 came back within range but there is Reverse T 3 which see 's if it's actually being used..( I think)..untested .......I digress

    After a chat with my sister who revealed at the grand old age of 42 she is Lactose Intolerant.She screens all labels lol :-).....

    My mum doesn't drink it either ......

    I'm wondering if this is the cause

    I'm a big coffee drinker and semi skimmed kind a gal.......( smoothies ...etc) . ....4 stone heavier than l was 18 months ago and that's depressing but have avoid going down that route pill wise .

    Anyway .......went back to the Drs ...we have 4 in our practice again said I don't think it's Dairy ...I also cut out Levo for 3 days ...under Des orders to see if the hives went .....they didn't.......

    Funnily enough Levo contains Lactose.mmmm

    So I'm off Levi totally till they retest in January....I'm knackered

    bloated face is awful ,dry skin back with avengance .....

    I gave up smoking 19 months ago feel like starting again.......

    Also told me to go dairy free for 2 wks ......good good I didn't know it would be so hard I've done it for 4 days ...I feel deprived lol......

    So they're looking for an alternative to the Levi and the majority of meds contain lactose ....Which I believe when you have one intolerance there is probably another ......Wheat I'm guessing although been told not to give that up as will come back negative in tests.......as they're referring now finally to Immunology and Endocrinologist......small victory for persistentance......

    So ask for T3 And Reverse T3 to be tested.......

    Hope all goes well.......:-)

    • stephanie1968
      stephanie1968

      Posted

      On another note Thyroxine isn't manufactured at all in the UK .......So they are loath to get anything other than the 3 manufacturers they use which are under licence.......

      That's why the US have more knowledge regarding the subject and take it a little more seriously as a whole......

      You can get other forms but either a private prescription or precsribed named ....

      Thyroid UK has a lot of information on they're website which is aptly named Thyroid UK.:-)

    • barbara98940
      barbara98940 stephanie1968

      Posted

      Stephanie, have you changed brands of thyroxine? They're not all the same! They have different fillers in. I too developed hives, though not as badly as it sounds like you have. I found the brand made by Wockhardt was the most hypoallergenic and had the fewest fillers in (they only make 25mcg tablets, so I took 4 to make the 100mcg dose). The brand I reacted to the most had 'acacia powder' in.

      I found I'm intolerant to corn/maize starch which is in all the synthetic thyroxines. Have you tried the oral solution levothyroxine? It's expensive (£125 a bottle) but I was prescribed it on the NHS. I'm looking at the box now. It's got glycerol, sodium methyl parahydroxybenzoate (E219) in it. Unfortunately I swelled up after just one dose. I think it was the glycerol, as it can be from corn.

    • barbara98940
      barbara98940 stephanie1968

      Posted

      Re dairy free: Porridge made with oat milk is nice. If you are in the UK, morrisons, asda and sainsburys all sell it (in a uht carton)
    • stephanie1968
      stephanie1968 barbara98940

      Posted

      Waiting to see the immunology dept and Endocrinologist...after much nagging and 7 wks of hives .....been of the Levo for a week under drs orders and dairy free for 5 days boy do I miss my cappuccino fix......Still have intermittent hives although not as bad as before ....haven't cut out bread and also staying clear of high histamine foods......

      Pharma was one brand can't think of the other but both had the same ingredients....lactose n maize starch.....

      T3 was 5.6

      Tpo antibodies 188.4. Normal range is 1-9

      All other results are mostly at the top end of each reading apart from lymphocytes,white cell count being over and red blood cell distribution .....

      I'm at a loss till a proper diagnosis comes through .......

      Knackered too boot......

      Drs say there no alternative to Levo so I gave them thyroid uk :-)

    • stephanie1968
      stephanie1968 barbara98940

      Posted

      May try it ...I'm in the U K

      Have responded to your last post but because of a reference to another British thyroid site it's gone for approval lol......

      T3 5.6

      Tpo auto antibodies 189.4 . Normal range1-9

    • barbara98940
      barbara98940 stephanie1968

      Posted

      Stephanie, check out intolerancr to maize (US nsme) / corn (UK name). It's in everything. Another idea is intolerance to soya. Also look up blastocystis hominis - tthere's a really good site by american 'nih'. It's a gut parasite which causes problems digesting foods.
    • stephanie1968
      stephanie1968 barbara98940

      Posted

      Finally ....10 days dairy free no hives .....I've also been off the levothyroxine and feel awful ......

      Finally referred to Endo ......n h s is busy Jan appt.......immunology March.......I suppose it will work out fine in the end .....

      Also getting Lactose free thyroxine through the drs .....he sighed of course and said if you need it you need it :-)

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