TSH suddenly elevated.

[ZoMa]

hi I’ve had quite well managed Hashi’s -diagnosesd in 2020. After a rocky year at the start my TSH has remained below 1. It dropped as low as 0.02 but then has been sitting around 0.5 which is where I feel most well. My most recent medichecks result is attached followed by my GP result.

Since then I have had a GP blood test which placed my TSH at 7.7! This was really out of the blue as it has not been above 1 in almost 2 years. I had been unwell and had also had 1 of 2 Rituximab immunotherapy treatments for RA a week earlier but this was the only change. Does anyone know of any interactions? My neck has been really tender at the front for a couple of weeks and I’ve been incredibly tired.

I have spoken with the GP who did complete a phone appt after I refused to wait 5 weeks to see someone! We’ve agreed to increase my Levo from 125 daily to 150 sat/sun and remain at 125 Mon-Fri. My vit D was below at the medichecks and my vit b12 was low. I am taking supplements now so hoping that will have improved things. GP retested b12 which had increased but was not interested in vitd - said this was not uncommon at this point in the year. I do wear spf 50 on my face and exposed skin all year as I am sensitive to light.

Any thoughts regarding rituximab and TSH? Or could this be linked to me having been unwell? Any thoughts gratefully received. I am dairy, gluten and soya free in my diet and I have removed chemicals from my lifestyle wherever possible. These changes seemed to have made such a positive difference until recently.

Thanks Zoe x

[ZoMa]

medichecks result also…

Photograph of medichecks blood test results.

[ZoMa in reply to ZoMa]

vit B12 from GP

GP Vit B12 result

[Jaydee1507 Administrator]

TSH can be a poor marker of replacement therapy, the NHS doesnt realise this though, I'm thinking about your previous tests not the current one.

Free T4 (fT4) 14.5 pmol/L (12 - 22) 25.0%

Free T3 (fT3) 3.77 pmol/L (3.1 - 6.8) 18.1%

Your free results are just terrible for someone on replacement hormone.

What dose are you on I am assuming Levo? Approximately how much do you weigh? There is a calculation where a very approximate final dose can be worked out by weight.

weight in kilos x 1.6 = guestimate dose

What supplements are you taking?

Do you always get the same brand of Levo? Has this changed recently?

It could be due to you being unwell. It could be a Hashi swing which can happen, you are still fairly early into treatment.

[ZoMa in reply to Jaydee1507]

thanks Jaydee. I have been on 125mg for sometime which is slightly over the 1.6 Nice recommended guidelines. When I was first diagnosed my TSH was up in the 60s and it took some time to bring down. However my Free TS3 and 4 have never been anywhere optimal. I have not noticed a change in my Levo packaging. My GP do not like to test anything but TSH. Even getting vitamins is a trial. I think I will put everything in writing to them so I have a paper trail. Thanks.

[Jaydee1507 Administrator in reply to ZoMa]

The only way most people here get things they need tested is to buy private tests. It doesnt need to be done too often. thyroiduk.org/help-and-supp...

I doubt anyone here is prescribed vitamins unless their level of something has been deficient. GP's aren't the right people to turn to regarding vitamins. They are available over the counter and online.

[ZoMa in reply to Jaydee1507]

Thanks and I do agree that supplements etc are in our hands . Apologies if that came across otherwise. I supplement both VitD and B12. My diet is gluten, soya, dairy free and home prepped wherever possible so I know exactly what is in there. However my dad has pernicious anaemia so I am conscious that this is not resolved with over the counter supplements. I test at least annually with one of the recommended tests in here. This is to keep an eye on this for me. My GP surgery does not accept these results. They question the level boundaries used as these do not always match NHS ranges or measures. This does make it more tricky when things are low or out of range. X

[tattybogle]

Both Rituximab and being unwell could theoretically have messed with thyroid levels ,

'Being unwell' would only afect then 'temporarily' and probably only if you were extremely unwell .

it's never a good idea to trust thyroid result taken when seriously ill , or shortly after .. it is best practice to wait few weeks and re-test.

rituximab ? maybe could affect them for longer ( the duration of treatment course at least ?)

eg. from a quick google .... in this case study rituximab appeared to cause high T4/T3/ low TSH / and reduction of TPOab jamanetwork.com/journals/ja...

... obviously in this case it has gone in the other direction to your TSH .. (and we don't know what your fT4 is) but ..... i think this at least raises the possibility the rituximab could have had something to do with your TSH suddenly being 7 .

GP would have been better to organise an fT4 test to see if it agreed with the unexpectedly high TSH .... before adjusting dose .... but they have only adjusted dose very slightly anyway and i presume they will be doing a retest in about 6 weeks ? .. so use it to push them to do an fT4 test aswell next time not just TSH, due to the possibility of rituximab affecting things ~ you can probably find more stuff re. rituximab .. i found that one just googling "Rituximab TSH"... discuss getting fT4 tests while you are on rituximab with GP before the blood test.. as phlebotomist may not be able to add it on the day.

[ZoMa in reply to tattybogle]

I was quite unwell and unable to get out of bed, however this can happen when I get a flare up of my AI symptoms. These are happening more and more regularly which perhaps I should have taken as an indication that things are not right. I am going to push for a GP FT4 and 3 test. I am back in 6 weeks. I’m going to out this request in writing with the reasons I have from both you and Jaydee. I’ve just had my second dose of Rituximab this week but so far I’m up and about albeit tired. So I’m keeping everything crossed for a better weekend. Thank you.