Under active thyroid for 35 years now suddenly overactive

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I have had an under active thyroid for 35 years and for much of the time been on 200 mcg of Thyroxine with annual check ups.  In January my voice became very hoarse (it still is) and separately to this GP reduced Thyroxine to 150 mcgs.  ENT Consultant says no connection between hoarseness and Thyroid levels.   Repeat TSH and T4 level in August and GP has dropped Thyroxine to 50 mcg !!  I am worried because all these years I have been told Thyroid gland not working at all, now told in over active category.   Has anyone heard of this before ?   GP can't explain.  Hospital say have Speech Therapy.   Strange that hoarseness has been same length of time as change in thyroid levels - I feel I am going round in circles and getting nowhere.   It is now ten months down the line.  I am 67 years old.

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  • Posted

    hey ...is it maybe good that your thyroid has kick started?...reducing the meds is great....check out the nutritional elements you can add to support your thyroid and maybe to further reduce thyroxin...maybe you could come off it? lucky you.

    your dosage had been super high !

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    • Posted

      I forgot to say I have recently read that silent reflux also called LPR is connected to hypothyroidism.  Hypothyoidsim can cause high blood pressure and high cholesterol.  It is a complicated condition. Although Marey is right that it is good you are able to reduce your dose (same for any medication) I can see you want to find out what is going on and why you have a hoarse voice.
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    • Posted

      Thank you libralady, My Cholesterol has always been fine and I've never had high BP but with everyone's support I will persevere with finding the answer !   Many thanks to everyone.
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    • Posted

      Hi libralady13

      I have suffered for at least 6years with silent reflu and acid reflux also,high blood pressure and high cholestral. and hypothroidism i weaned myself off Avanza (antidepressant) 12 months ago which i had been on for approx 6yrs too. Anyway i have lost 10kgs,my cholestral is now reasonable,bp is good if i keep up the exercise. Doctor reduced Thyroxine from 200mcg to 150mcg. I was told i would never come off BP tabs and thyroid glands dont heal & that the dose would keep going up not down.I am off cholestral tabs now. So who knows so i am going to keep walking and hope for the best and eat plenty of oysters for the iodine.

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  • Posted

    Hello,  That's very interesting. I know being hoarse is a symptom of hypothyroidism but not sure about overactive.  You don't mention what your tsh results were for the last 35 years and what they have fallen to.  I too am 67 and have  been underactive for over 20 years.  My TSH blood results were always around 2.8 (which is not low enough according to latest research).  Following a wrist fracture in 2012 I was found to be low in Vitamin D and prescribed tablets. Over this period my TSH has gone down from 1.something in 2013 and now this .93.  I have a lot of health problems and anxiety which I won't bore you with but recently I have had trouble with a condition not well known by GP's called silent reflux which causes hoarsness symptoms of sore throat excess mucus and breathing problems.  So two things to consider is it possible you may have something like this or is it definitely thyroid.

    Makes me consider that maybe my problems could be thyroid especially as my TSH has gone down so much.  My gp has lowered my dose of vitamin D3 as my levels were in the high range.  Hope this makes sense and is of some help. Good luck

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  • Posted

    Hi Sams55,   This sounds a bit tricky!  Your GP has reduced your Thyroxine because he apparently saw changes in your Lab results?  But GP’s are generally inept at handling thyroid problems.  Did he make the change based on TSH alone or did he take into account the free T4 and T3?  Also, how did you feel at the time of the change?  Were you ok on your 200mcg or did you feel hyperthyroid? 

     The voice change could indicate that there is something growing on your thyroid gland which is pressing on the vocal chords and causing a change in your voice.  I would think that the most urgent thing to check would be the gland itself with an ultrasound.

     I am also 67 years of age and had a hemi-thyroidectomy 28 years ago.  I have taken 100mcg Thyroxine all those years and am happy on that dose.  However, it does amaze me that in all those years my remaining half of the thyroid has never been checked considering the first half was removed because of nodules.  Last year a doctor downgraded my Thyroxine based on TSH alone by 25mcg and I became very ill.  It didn’t need to be changed at all – it simply altered because I had a bowel resection and that interfered with the lab results.  I put it back to the original 100mcg and will not allow anyone to make changes to the dose except myself.  My TSH is 0.08 and means basically nothing as my T4 and T3 are fine and I feel well.

     The most important thing is to get an ultrasound done on your thyroid gland – you must learn if there is anything growing there that should be attended to if Labs are actually showing hyperthyroid – then there must be a reason!   After 35 years on Thyroxine I’m sure you know when you feel well and when you don’t.  You must speak up for yourself and not allow doctors to change the medication willy nilly to suit their paperwork.  Be aware that you could become very, very ill on 50mcg – that is a huge drop – I can’t imagine that your thyroid gland has suddenly sprung to life after all that time – but nodules can develop and produce extra thyroid hormone, just not sure it could happen after 35 years on Thyroxine.  You need to find out!

     Sorry for long post .. I become alarmed when I see thyroid patients being muddled around and made ill unnecessarily by doctors – mostly based on the useless TSH test.

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    • Posted

      Hello Sketchy,

      Thank you so much - I feel you understand my frustration with Medical side who are just recommending Speech Therapy and my intention to get to the bottom of the dramatic unexplained change in Thyroid results and as you say 'sprung back to life' why ???.   No I haven't seen the results but I definitely had TSH, T4 and T3 as these have all been 'standard' for me.  GP who was new to our Practice in January showed me a graph on PC last week which outlined peaks to top of page without giving me the 'specific' results although the previous GP always did.    I did say I wasn't happy to reduce my Thyroxine as I felt well on that regime and also suggested there must be a link with the hoarseness.   He was adamant that there was not.   I saw ENT Consultant in March who said there was no cancer of the vocal cords and also recommended Speech therapy - did no investigations as he said he had just seen me to exclude cancer.    So reduction from  200 mcg to 100 mcg and now 50cg  and hoarseness have been running parallel since January.   I am happy to 'stand my ground' and determined to get to the bottom of it.  Many thanks again for your response - next step thyroid scan.   I will keep you posted.

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    • Posted

      Hello Sketchy,

      Thank you so much - I feel you understand my frustration with Medical side who are just recommending Speech Therapy and my intention to get to the bottom of the dramatic unexplained change in Thyroid results and as you say 'sprung back to life' why ???.   No I haven't seen the results but I definitely had TSH, T4 and T3 as these have all been 'standard' for me.  GP who was new to our Practice in January showed me a graph on PC last week which outlined peaks to top of page without giving me the 'specific' results although the previous GP always did.    I did say I wasn't happy to reduce my Thyroxine as I felt well on that regime and also suggested there must be a link with the hoarseness.   He was adamant that there was not.   I saw ENT Consultant in March who said there was no cancer of the vocal cords and also recommended Speech therapy - did no investigations as he said he had just seen me to exclude cancer.    So reduction from  200 mcg to 100 mcg and now 50cg  and hoarseness have been running parallel since January.   I am happy to 'stand my ground' and determined to get to the bottom of it.  Many thanks again for your response - next step thyroid scan.   I will keep you posted.

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  • Posted

    It sounds like you would be better off without your thyroid gland. 200 mcg is a high dose anyway. A friend recently had the remaining part of hers removed when she became hyper again so it can certainly happen. Has your thyroxine been reduced?
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  • Posted

    Hi - If you have auto immune thyroid problems then it is possible to swing between the too.  I too had voice and many other symptoms for many years and I was told it had absolutly nothing to do with my thyroid.  Howver, it turned out that it did and it was thyroxine that was causing me problems (even though my levels were always within range.  I have now changed to a different thyroid med with the support of my endo and things have improved.  I suggest that you read up - there are a number of good websites out there (not sure I can mention them here).  Also try and obtain your results and post them as it may give you an idea what is going on.  
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  • Posted

    I agree with sketchy.  Gps will change your dosage according to the blood tests results not how you feel.  If you felt well on 200mg then that probably was right for you.  Although the usual dose is stated at between 100mg to 200mg.  There are many people feeling well on 200mg and become ill if it is lowered as sketchy found out.  You need to take charge I know it is not easy I find it difficult but as said gp's don't know much about this condition and you have to do your own research and be aware of your own body.  Good luck hope you get it sorted.
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  • Posted

    Hi Sams55  I think the Thyroid Scan is actually called a Nuclear Medicine Scan which tests the thyroid gland’s function.  They use a radioactive iodine to measure the amount of iodine the gland or nodule absorbs and they get a good idea of what is going on there.  It may be a job for an endocrinologist.  I think I had that scan 28 years ago.  Then they may do a fine needle aspiration.  Best to find out what’s going on I say.  No good being in the dark .. you need to know.

    Also, be sure to get a copy of all thyroid blood tests so that you can keep an eye on the results yourself.

     How did you feel when your medication dropped to150 then to 50mcg?  Do you get very cold? .. I did .. my temp. was 35.2 sometimes – hypothyroid!  I was slow and could not/did not want to leave the house.

     The other scan they do is just the usual ultrasound which shows up nodules etc.  My daughter had one earlier this year and they found about forty nodules. 

    Keep in touch .. 

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    • Posted

      Thank you for the further information Sketchy re. the thyroid scans and the possibility of a needle aspiration.  I agree 100% I want to know what has caused this significant change and don't want to be fobbed off !   Yes, I did and do feel very cold.    I'll keep you posted.   Thank you for your suggestions and to everyone who replied to my post.
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  • Posted

    oh dear sam

    i'm worried by suggestions that you go under the knife or have radio-active tests run straight off the bat.

    an experienced physician would be able to palpate for nodules. what are your iodine levels? Insufficient iodine can often be a cause of nodules. have you read doctor brown s te in ....? he is among the foremost experts on simple iodine treatment for thyroid issues. Amazing that such a simple remedy has been overlooked. You may have been getting thyroid support from your meds this far... but no longer...our bodies do change and can get exhausted by deficiencies or increased exposures to toxin.  Perhaps you might benefit from a simple review...in the first instance...before considering more dramatic and irreversible interventions?

    Have you changed something in your environment? Gone over to harsher chemicals? Been using pesticides, or drastic chemicals for an external problem that you can think of?

    anyway just doing the most low key thing first why not ask for an antibody test (Ig) and for your iodine levels to be measured?

    To prompt your GP you take a saturating dose of (non radioactive) iodine and measure whats excreted ...if there 's a relatively high level of iodine absorption by your body...because its needed ....there it is you're low in iodine.....simples !!

    Hope this helps sam. Do share your research with your GP, once you've had a look at DBS and if you're in the UK and ask for an iodine test you may be escalated up to seeing an endo (endocrinologist).. though apparently they're not really conversant with these simple measures either, and want to start cutting people apart...so be careful and stick to your guns as you seem well able to do. Staying in control of your treatment and the focus of investigations...without causing offence of course...but you just want to look at the simple and nutritional elements in the first instance....surely. 

    Do hope this helps.

    I'm trying to get  nutritional support right for my thyroid...newly diagnosed hypothyroid...so am taking my own advice and trying supplementation! Happy to hold hands and to share with you together with all the other lovely people on here who also want to help and who are very kind and thoughtful . x

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    • Posted

      ps I'm taking 25 mcg of levothyroxine. It normalised my TSH.
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