Hi, I am new here and trying to find some answers to my (largely) self medicating dilemmas. Having been officially diagnosed with Hashimoto's in March after four years of actively investigating my heart (palpitations after exercise), back/spine (stiffness, pains, tremors in limbs), and having suffered joint pains, fatigue, anxiety, weigh gain etc on and off for years, I was started on Levo (25 mg) with all blood results 'normal' but for TSH 4.5. Unfortunately was not able to this day to get these initial results from my GPs but know that T3 and T4 were in range so the doc just put me on Levo 'for three months' and sent me to the pharmacy where I was enlightened that I am getting a free prescription as ..I will need to take it permanently.
After some initial hesitation and a private appointment with an endo in April (as I have a friend with Hashimoto's abroad and had an inkling it might need to be investigated) I was diagnosed with Hash myself and started taking Levo at 25mg and then increased to 50 after two months. There was some improvement initially but still had a rough time, especially during two trips abroad to warmer climates in May and June, which were quite exhausting despite one of them being a regular holiday! July feeling tired, August the same till during another trip abroad I started to feel particularly rotten (hyper as it turned out) and had more tests done there (TSH 0.099) and talked to an endo who has Hash herself and immediately suggested stopping Levo for a while, going gluten free, taking Vit B1 and magnesium for muscle shaking and spasms. Nothing of the sort from my endo or GP here of course upon consultations on coming back though they agreed I need to cut back to 25mg which upon trying intermittently with no Levo at all was still producing hyper symptoms. At that point I was reading extensively (Wentz, Peatfield, Haskell and the Internet of course) and started to see that there was a lot more to Hash than just taking thyroxine!
All of September I was trying to raise my TSH to around 1 on advice of my foreign endo but after one TSH test scheduled by my GP earlier on for the end of August which showed increase to 0.14 after two weeks on no/cut Levo and a refusal to have another one at the end of September I was in the dark and the only thing I was sure about was that I started having a lot of palpitations, nasty muscle sensations (tremors, burning, spasms you name it), insomnia, extreme anxiety and hypoglycemia especially in the first half of my cycle (which is definitely a pattern) and was unsure whether I would be able to travel abroad again at the beginning of October for my Mum's special surprise birthday party I was organising in the meantime.
I did go in the end and took the chance to do a host of blood tests as well (no need for referrals or any paperwork there just cash, 8-)) some suggested by my foreign endo and some on the basis of my reading.
TSH at the beginning of October 4.099 (range 0.55 - 4.0),
FT3 4.51 (3.5-6.5),
FT4 14.44 (11.5-22.7),
TPOAb - 302
TgAb - >1000
Vit D3 23 (30-80),
B12 729 (211-911) (in March it was 527 here)
Morning Cortisol 289.1 ng/ml (43-224)
DHEA >30ng/ml (1.3-9.8)
ACTH 24.20 pg/ml (5.00-46.00)
Progesteron (which I take in the second half of the cycle on advice of my gyno as a progesten tablet) and oestadriol within range.
Glucose in the morning (no breakfast) 81 (70-99)
Alkaline phosphatase 69 U/l (38-126)
No gluten or adrenal gland antibodies.
A month earlier I had my magnesium, potassium, sodium and calcium checked and all were within range (as was iron then though so not sure how reliable these were)
For the last few years my MCH and MPV are testing high while leukocytes low.
Last month with I started quite heavy supplementation with Vit B1 100mg, B3 100mg, B6 50mg, Multivitamins and Minerals, Magnesium 300mg, Vit C 1-2g, Vit D3 400 IU, Iron 40mg, and successively introducing Probiotics, Vit E 400IU, Betain with Pepsin, Zinc (today 22 mg). Thinking about Biotin and NAC. Some of the above have been kinesiologically tested to arrive at the make and dosage as was selenium to which I had a bit of a reaction on trial and which showed in kinesiological testing not to be a priority. Seeing my kinesiologist next week for more tests on supplements and foods. Also taking adaptogens from my herbalist for adrenal and thyroid support (Synachten test done by my endo here was normal of course). Adrenals are something I worry about because I am a habitual worrier and have always responded to stress poorly.
In the meantime, my Levo (now Euthyrox which is easier to divide) was reintroduced by my foreign endo as a quarter of 25 every other day. Attempts to increase this into a quarter every day or half a tablet resulted in more symptoms (palpitations especially and insomnia) and a couple of hyper episodes plus increase in hypoglycemic sugar drops - had to eat even twice at night! All this most pronounced in the first half of the cycle although the progesteron phase seems to be now affected more as well though I am definitely more hypo now (dry skin, tiredness). Had a cold for two weeks with coughing and my vocal cords/voice seems to have a frog all the time.Suspect a connection with starting probiotics earlier on but postnasal drip continues still. Decided to do Adrenal Stress Profile and Rhythm female hormons profile testing and was just sent the tests from Genova. When is the best time for Adrenal Stress Profile BTW, any time of the month?
Tried to increase Levo to a quarter every day for the last few days but my pulse gets quicker and I cannot sleep at night so today had a break. Muscles seem to be sore and shake a bit at times and have a pain between my shoulder blades and chest seems a bit difficult to expand fully. In a weird way I seem to be getting stronger (supplements?) and weaker (hypo?) at the same time. Working on my diet/leaky gut, liver support, relaxation seems a bit much!
This has become a very long post but I guess I had to tell it all to somebody as otherwise I have very little support with it all with only my husband and occasionally my foreign endo on the phone to talk to. My endo here was battered into switching me from private into a regular NHS clinic but will only discuss possible T3 switch while leaving me to my own devices ('Keep on doing what you are doing at the moment and then will see.') Been through 4 GP so far with only one showing a bit of understanding but admitting frankly she can only give me TSH tests if I am under an endo (even foreign) supervision, possibly every month rather than 3. Last visit to GP on Wednesday with my post nasal drip was massively frustrating with him telling me to live a full life and that my results from March were normal so there is no need to test anything (like folate I wanted) or retest either as my ferritin and D3 here were within range.
So he final question is - anybody having any ideas about my levothyroxin dosage/ the way forward after all that?