Low TSH Low FT4

[hoxo]

Hi all, just joined this forum and was wondering if anyone could help with my problem. I had a susbtotal thyroidectomy in 1993 and was on 100mg thyroxine replacement for many years afterwards and also suffered ill health and loads of problems; then a remnant of my gland grew and I went hyper again. The consultant wanted me to have radioactive iodine but I refused after having many years of undertreatment and lack of sympathy or medical understanding from various GPs as I was worried I'd be Hypo and undertreated and so I was discharged from his clinic with various scare warnings of osteoporosis and stroke risk. However following this I enjoyed 3 years of very good health where my TSH was suppressed <0.05, my FT4 and FT3 were hovvering just on or above the upper reference range. Now however I have begun to feel unwell and my suspisions of hypo symptoms have been confirmed with my FT4 dropping to 10 and my TSH becoming detectable again at 0.07. I'm feeling terrible with tiredness, weight gain, brian fog, depression, heavy periods, PMT, constipation, tendonitis, bloating, eye puffiness etc etc!!. My GP doesn't know what to do and won't give me thyroxine so I've ordered Armour from the USA and am going to self medicate but am concerned over secondary hypothyroidism, pituitary problems and adrenal issues (a previous uptake test showed adrenals were borderline - also I have antibodies for both Graves and Hashimotos).

Anyone any ideas or suggestions?

H :)

[hoxo]

My tsh is 0.07 (range 0.3-3) my t4 is 10 (range 10-20). My GP wanted to prescribe carbimazole for suppressed tsh (<0.05) but I refused as my t4 and t3 were just on upper range and I didn't want to go hypo and also I was feeling really well. My doctor doesn't seem to understand much about thyroid hormones. Also I've said to her that surely you can't use normal reference ranges for someone that's had a sub total throidectomy 17 yrs ago, has been on all sorts of medications - that's not 'Normal'! I asked what the reference ranges would be for someone with Graves etc but she didn't know the answer.

I saw I private GP a while ago Dr Peatfield who said I could take armour if I had problems so I suppose it's not totally classed as self medicating. I know a bit about thyroids and have a long experience of living with the disease and frustration at the medical profession so I'm not completely new to it all!

Thanks for your advice and comments btw

Helen

[Barb135]

First off, I must say that I never advise self medicating.  What are your latest thyroid test results, along with reference ranges, since these are lab specific?  

If you are obviously hypo why won't your doctor give you thyroxine?  How were you able to keep your TSH suppressed and FT levels so high for 3 yrs without med?  

[Super_sally888]

Hi,

welcome.  You know we are all patients here and we can't condone self medication.  Best would be to find a doctor that would work with you.

My experience and that of many others here is that after a long time of being on thyroid meds TSH becomes unreliable for monitoring and adjusting meds.  Meds then need to be adjusted on the basis of how you feel and on you FT3 and FT4 levels.

FT3 and FT4 usually are targeted in the upper 1/2 to 1/3 of the reference range.  

Can you find a Dr. to test adrenals?  Really you need someone knowledgeable - maybe an integrative medicine dr? Do keep looking.

I have no idea of the condition of my adrenals becuase they've never been tested and my Dr. does not agree to test that.  Saliva tests are not available here.

Best wishes....