Lower dose and feeling unwell

[andi_smithe]

Hi everyone,

I wanted to ask for some comments on my recent blood results. I have taken 200ug/day of levothyroxine for several years. In April 2021 I had a blood test, and a GP advised me to reduce to 175ug/day. In January this year I had another test, and was reduced to 150ug/day. While my results from last year aren’t available, the results from January were:

Plasma TSH level - 0.16 (0.30 - 4.20mU/L)

Plasma free T4 level - 20.00 (9.00 - 19.00pmol/L)

After a couple of weeks on 150ug, I started to feel quite unwell. I was absolutely exhausted (except for about 30 mins after eating), and developed really dry skin and eczema. These symptoms were all very reminiscent of before I was diagnosed with hypothyroidism, and I called to request another blood test and my iron levels checked. The results of this were:

Plasma TSH level - 0.32 (0.30 - 4.20mU/L)

Serum ferritin - 12.8 (10.00 - 200.00microg/L)

(This test also has results for plasma glucose, creatinine, sodium and potassium levels, eGFRcreat, and a full blood counts, which are all normal. FT4 was not tested.)

The only follow-up I got was a text advising me to take iron supplements, since the ferritin is on the low side of normal. I started doing this, but I also experimented with a few days at 175ug. For better or worse, I did feel much, much better after doing this, so I scheduled a call with the GP.

Unfortunately, she was very dismissive of my symptoms, and said that the numbers from the retest in April indicated I probably needed to reduce my dose even further. I didn’t feel comfortable saying I had restarted 175ug/day and felt better - I also take a controlled drug, and I was scared of giving the impression I would meddle with that. I ultimately have argued to have another blood test in a few weeks (she reluctantly agreed to test TSH, T3 and T4 - although apparently “you can tell everything from the TSH level alone so the others are a waste of time”).

The dilemma I now face is whether to stick to 150ug/day while waiting a few weeks for another blood test (and risk developing horrible symptoms again), or whether to maintain 175ug/day without the doctor knowing. I am also trying to get an appointment with a different GP, who has previously been very helpful (e.g. with the controlled medication I take), and seems less “by-the-book”, as I am hoping he might be more receptive to discussing my dose. My impression is that it seems like my blood results on 175ug/day were actually pretty okay (although I did not know you were supposed to have the test as early in the morning as possible and without having taken your medication - it would be interesting to be retested under these conditions).

Does anyone have any thoughts on how I might best approach this? I just can’t go back to feeling like I did at 150ug/day, as I could barely drag myself out of bed.

[shaws Administrator]

Few doctors are knowledgeable about anything to do with hypothyroidism, unless they, themselves, have the condition.-

My TSH was 100 and GP phoned to tell me I had no problems. I cried as I felt very unwell - also - like many on the forum, - we've never heard of hypothyroidism or knew what it mean. I believe few doctors have a clue either.