Where to go next

[ErraticAspie]

Hi,

I was diagnosed in 2020, and have had, if anything, since the assumption of Levothyroxine, an increase, rather than a decrease in symptoms. I have tried talking to my GP, and she means well, but doesn't think that anything that I am experiencing is Thyroid related (I cannot see how it isn't, at this point-even though I accept the power of stress and anxiety to make one feel worse is significant-and may play a role-perhaps even a significant role in my case). My blood tests have not indicated any conversion issues since I started taking supplements, it is not as if my T3 was well under 50% of the way through the range while my T4 sat above it. I have asked about other autoimmune conditions, given the presence of some possible signs (a red rash on my cheeks-lines on nails, etc.-which given my other symptoms, one might think would be a cause for concern). All this is making me feel miserable, and I just want to be able to work out what is going on in a (hopefully) scientifically respectable way. I understand that the science and research is difficult and underfunded, and I of course respect that there is much we do not know, but when even convincing physicians of things that are ESTABLISHED in the medical literature is difficult, one does struggle to know where to go. Thanks in advance.

[SlowDragon Administrator]

87.5 mcg per day, rather than an alternative day dosing regimen of 100 mcg/75 mcg. 

Free T3: 5.97 (Range: 3.1-6.8 U)

TSH:0.11 (Range 0.27-4.2 U)

Free T4: 19 (Range 12-22 U)

Results from 5 months ago

Have you had vitamin D, folate, ferritin and B12 tested recently

What vitamin supplements are you currently taking

Suggest you get thyroid and vitamins retested

Always test early morning and last dose levothyroxine 24 hours before test

What brand levothyroxine are you currently taking

As you have Hashimoto’s have you had coeliac blood test done

Are you on strictly gluten free diet and/or dairy free diet or tried either

Approx how much do you weigh in kilo

87,5mcg levothyroxine is a low dose, especially for a bloke

[1tuppence]

Just a thought, do you always get the same brand of levothyroxine? Do you notice any differences if the brand is changed? Is it possible some of your symptoms, eg the rash, an allergic reaction to something in your tablet?

[Buddy195 Administrator]

Having read your recent posts about increased anxiety/ rheumatology issues, I just wanted to share that following a gentle exercise programme has helped me considerably. I would recommend you give pilates a try, as this has helped me both physically (improved posture, reduced muscle pain, improved strength) and mentally (improved breathing/ relaxation, reduced stress). Others have had similar benefits with yoga or Thai chi. You may have to try a few different classes to see what works for you.

[Knackeredandcross]

with you mentioning the skin to your face and the nails thing have they explored autoimmune conditions as I believe those symptoms are common with lupus. I’m only a layman so may be way off target but have a look through the symptoms and see if it’s worth investigating. I hope you feel better soon

[Nolina]

I sympathise. I have recently requested a referral to an endocrinologist (stil waiting) as raising my levothyroxine dose made me really hot but reducing it the other symptoms return. I could sleep all day if left to my own devices (I work). Ridges nails. Weak nails. Thinning hair. I’m pretty sure I have developed sleep apnoea recently. I can’t report on my specialist appt yet as still waiting but wonder whether you could ask for a referral. I have seen advice to ask for an endocrinologist with thyroid specialism rather than diabetes (if that doesn’t apply to you also). I relate to you just wanting to feel well.