Humira and hypothyroid

[Girtonian]

Hi, I was diagnosed hypothyroid (hashimoto's) at Easter. I have rheumatoid arthritis, which is well controlled by humira injections (fortnightly). I went gluten free three years ago and also avoid some other foods. Problem is, I felt fantastic when I started on 50 mcg levothyroxin, but that faded after a couple of weeks. Each dose increase has helped for a short while and then symptoms have returned. I'm now on 100 mcg and haven't noticed any improvement, in fact I felt worse, depressed and tearful all the time. I persuaded GP to let me take an extra 25 mcg alternate days but after my latest blood test they have phoned to say go back to 100 mcg. I feel so tired and have poor memory and can't think straight. Is anyone else on humira for RA? I know it's hard to get, I was lucky to be put in a trial 16 years ago, it worked, and I was allowed to continue on it. Maybe these ups and downs are normal? I would just like to get back the joy and energy I felt when I first started on levothyroxin. Such a shame it didn't last!

[shaws Administrator]

Welcome to our forum Girtonian. Today is the first day of learning that many doctors do not know how to treat the patient with clinical symptoms and who mainly only refer to the TSH blood test result.

First thing to do is get a copy of your latest blood test result and make sure ranges are stated as labs differ and it makes it easier to comment. Post on a new question for comments from members.

Blood tests for thyroid hormones should be the very earliest appointment and fast. You can drink water. This allows the TSH to be at it varies throughout the day i.e. high in a.m. low p.m.

Usually you should take levothyroxine first thing but don't take it on the morning of the test so that there is approx 24 hours between your last dose and the test and take it afterwards. Some take a bedtime dose instead and then you'd leave approx 2 hours after food before levo.

Ask for TSH, T4, T3, Free T4 and Free T3. The labs might not do them if TSH is 'normal' (never take normal as being o.k. if we still have symptoms) so you would have to get these done privately. It will be worth it. We have recommended lab and you get a small discount.

We get into problems when doctors adjust our meds according to our TSH, up/down/up/down whilst symptoms continue.

If GP hasn't tested your B12, Vit D, iron, ferritin and folate ask for these too and have them at the same time as your thyroid hormones.

It is early days yet for you as you were diagnosed at easter but I think constant adjustments may not be the best way to treat.

When first diagnosed and put on levothyroxine and we feel a benefit which then wears off that's because we need an increase. 100mcg is a low dose but if your doctor's intention to keep you somewhere in range it should be increased till you feel well but they are following guidelines laid down which most of us on this forum know are ridiculous ones for those of us who continue to be unwell.

I'm glad humira has relieved your R.A. my daughter has it but is now severely disabled.

[Girtonian in reply to shaws]

Thank you. I am just beginning my journey with hypothyroid, but I think this forum will help. I am sorry to hear your about your daughter. RA is a horrible thing to have. I have been relatively lucky, the humira has worked well for me and I got on to it quite quickly because of being in a drugs trial.

[Barrister]

I was taking Humira for 14 months until it stopped working. I was also on Levothryroxine during that time. I was,ok,on thyroxine but never felt great until I stopped it and started T3 only. I'm now injecting Enbrel weekly and taking T3 which seems to be suiting me. Clemmie

[Girtonian in reply to Barrister]

Thank you Clemmie. Interesting! Glad the embers and T3 are working. Kay