Hi, got the latest results from the surgery for help and advice from all you smart people, but first The Story So Far....
Diagnosed hypo in 1994 age 27, by approximately 2001 was on t4 combo with 20mcgs t3. Never tested for Hashimoto's. In 2011 hit M.E/cfs wall on 175mcg T4 and 20mcgs T3. In 2012 Endocrinologist in England reduced T4 to 150mcgs as TSH only 0.01.
In June 2014 Welsh GP took away all T3 and cut my T4 to 100mcgs overnight because my last bloods in November 2013 had been : -
Free t3 5.2 pmol/L range 3.1 - 6.8
Serum tsh levels 0.01 mU/L range 0.27-4.2
Serum free t4 16.4 pmol/L range 11-25.
Having already worked hard to reduce and lose many many M.E symptoms by about two weeks into slashed medication I had the least M.E symptoms since first being ill for about 1-2 weeks, it felt like i could glimpse recovery, but then started significant crash. Increase and return of many many symptoms I thought I'd seen the back of a year or so earlier.
Sat out 8 weeks on the 100mcgs of T4 only, then got new bloods done, plus suggestions from here (although don't know what happened to the vitamin D one) and these are the results from the 11th August 2014:
Free T4 = 17.4pmol/L - *
TSH = 4.64 mU/L range given 0.27 - 4.20 Notes say: High, if no change in levothyroxine in last 8 weeks, elevated TSH suggestive of poor compliance/ inadequate dose.
Free T3 = 3.4 pmol/L - *
Ferritin = 75 ug/L
Folate = 6.8 ug/L
B12 = 373 ng/L notes say: B12 deficiency unlikely, seek further advice if suggestive feature present eg neuropathy **
Thyroid perioxidase antibody level = 39 U/mL High Original Result 39.0 U/ml (<34.0)
* No range given but last results did give range, could assume same lab?
** When first ill with M.E self injected B12 and in January 2012 my levels were 1451 pg/mL - since GP cut my meds in June a huge explosion of neuropathy symptoms, thrumming and tingling that I though I'd more or less seen the back of re-emerged big time .
I have written and asked to be referred to Cardiff Endocrinologist and not the cretin who GP phoned (because she was proposing cut to 50mcgs!!!!! alone) and sanctioned cutting my medication overnight with no titration, and have an appointment with a different GP in practice to discuss whether they will refer me. Since having my bloods done last week I have been taking an additional 25mcgs T4 and using Blanchards ratio of 98.5 to 1.5 been taking as small a bit of a 20mcg T3 tab as I can get, 2.5-5mcgs (obviously realise this completely variable quantity wise.)
The questions I have are:
1.How do my recent bloods seem, anything anyone thinks relevant that GP should address? I'm pretty sure that when I do see her she will ramp up my T4 by 25mcgs in response to that TSH, anything else I should be urgently getting her to address or just wait until I'm talking to a human being in Cardiff (I hope)? Am I Hashimoto?
2. Does anyone have a chemical/medical explanation as to why initially when my dose was slashed in June I had such a positive response and health significantly improved for short but sweet time? Is that anything to do with RT3 levels changing in reaction to dropped T4?? Or anything else anyone else understands?
3. On my new regime of 125mcgs T4 plus tiny bit of T3, I felt improvement for first 6 days and then have had bit of a dip, increase in various symptoms etc. What should I do now? Is the dip because too much T4 and not enough T3 or need for just T4 increase? Or Both need increasing? I have a stash of unused meds that I am using to supplement, so what would you do bearing in mind last weeks bloods? What needs most attention?
My aim is to attempt to get optimum T4 T3 balance (I'm not going down the NDT route) then present to GP as what's best for me and hopefully not have such a supressed TSH, perhaps 0.1 as English Endo had suggested.
Sorry this is so lengthy, but all your help and advice and information really very much appreciated. Thank you!