Is it normal to still feel like I'm on a rollercoaster 6 months into taking meds & seeing nutritionist, advice please!

[carolinepetrie]

Hi Everyone I really value this forum and would like to draw on your expertise. I was diagnosed with Hashimotos about 6 months ago at time of diagnosis my TSH was 62.8 my Free T4 6 range 9-21 pmol/L.

Over 6 months later my latest results as of August are TSH 0.23 range 0.2-4.5 mu/L

Free T4 17 range 9-21 pmol/L ,Free T3 4.4 range 2.6-6.2 pmol/L

Vit B12 567 range 180-2000 ng/L, Serum folate 12.5 range 2.8-20 ug/L

Ferritin 73 range 15-200 ug/L, Vit D 103 range 25-162 mol/L

I have been working with a nutritionist since August who has been giving me B12 supplements various supplements for my gut to improve its health and absorption of nutrients. Although I really felt the benefit of this last month and as a consequence began reengaging with work I have now had 5 days of feeling really unwell and wondering whether I've just been overdoing it or B perhaps having worked on my health a lot through exercise and nutrition maybe its an increase in medication that will make the difference to regular good health as at the moment I often have that rollercoaster feeling and not able to fully engage in life again. I am currently on a 100mg of Levothyroxine and have been since April with G.P not keen to increase as my results are in range. This morning I negotiated a small increase of 12.5mg as G.P worried that if over medicated this will lead to thinning bones and hypo symptoms. I have been really patient and proactive but beginning to wonder if its possible to feel fully well and stable. Please advise they is a lot of great knowledge in this group, do you think trying this increase is a potentially helpful move??

[Phoenix605]

I was on that roller coaster for 18 months but it took ages to get me stable (I dont have hashi) and I had lousy nutrient levels interfering with conversion too.

Your conversion is pretty good at 3.8:1, I believe the aim is under 4, so you should be getting pretty much the full benefit of your levo. A small raise can have a surprisingly a big effect on levels when you are getting towards optimal so yes it is worth trying. Some of us need very low TSH to have good FT3. I dont feel well unless mine is above 5 and 5.5 seems to be my sweet spot but it knocks my TSH down to 0.02. I have gently educated my GP and yours sounds open to negotiation/education too.

It is over range FT3 that increases risk of osteoporosis or heart issues not low TSH but that is not what they are taught, every time my GP saw my TSH she said ‘I dont suppose you are going to agree to a reduction are you’ and I agreed!! We came to an informed understanding and she did agree that I could keep my dose if she could trust me to come back and accept a small reduction if I started exhibiting ‘hyper’ type symptoms. This is the piece of research I used on her, I dont get the ratios bit but the definition of suppressed and the conclusion is easy enough.

discovery.dundee.ac.uk/port...

[carolinepetrie in reply to Phoenix605]

Thanks for this beacon of hope, I hope it makes a difference. I have been wondering whether my Free T3 conversion may also have an impact as its middle range and have heard others on the forum say it needs to be in upper range to feel well. The GP’s I’ve seen don’t seem to recognise this and also very nervous about your TSH levels going too low but everyone is different and perhaps mine needs to be really low in range to feel well. Just wondering if anyone in this group is below range for TSH but feeling well??