Change to Thyroid Tests after 40 years of the same dose of Throxine

[Rymer]

I am having a battle with my GP. Diagnosed with underactive thyroid when I was 26 and I am now 70 and for past 40 years have been on 150 thyroxine which worked perfectly for me. In April 21 I got diagnosed with PMR and put on 15 mg of steroids. I eat a low carb diet, take Vit D and have done a slow transition to 6.5 so far and all was well. However about 10 months ago my thyroid results came back as abnormal. Dr said to go down from 150 to 100 which I refused. Second blood test Showing ‘abnormal results’ I agreed to 125 a day. Tiredness but as I am also tapering off steroids it was hard to find which was causing the tiredness. Just had another blood test and advised to go to 100 mg a day. Although it’s only been a couple of weeks the lower dose has making me extremely tired and I am dragging myself around again. I have argued the point that it is coincidental that my results have always been static and fine for over 40 years until I started taking steroids. I am currently in holiday so can’t go back to the Dr to query it . Do you think I should go back to 125? It sucks that we are trying to do the best for ourselves but Drs seem only to pay attention to results and not symptoms.

[SeasideSusie Remembering]

Rymer

If you post your actual results, with their reference ranges (these vary from lab to lab) we will be able to make more meaningful comments that without the results.

Does your surgery offer online access t results? If so register for that and get them there, if not ask the receptionist (not the doctor) for a print out of your results, the ranges will be on the print out. In the UK we are legally entitled to our results without charge or question.

[Charlie-Farley]

Hi Rymer

Polymyalgia rheumatica (PMR) - I literally learn something new every day on here.

Do you have results with the ranges that you can pop on your post? You can edit - bottom left where it says more if you haven’t done this before.

This will help the more knowledgeable members give informed advice based on their lived experiences. 😊👍

[Rymer in reply to Charlie-Farley]

results on 22nd Sept were as follows

T4 =23.0 (Range 11.1-22)

Serum Free = 4.1 (Range 3.1 -6.8)

TSH = 0.01 (Range 0.27 - 4.2)

This was after about 5 weeks on 125 mg Thyroxine from 150 mg

[Charlie-Farley in reply to Rymer]

SlowDragon and SeasideSusie give good guidance and I have tagged you into another post that may resonate. Especially Greygoose’s response re diet and conversion T4 to T3

😊👍

[Rymer in reply to Charlie-Farley]

That’s great - thank you very much

[SlowDragon Administrator]

Exactly what steroids

Steroids can lower TSH

ncbi.nlm.nih.gov/pmc/articl...

Dexamethasone doses as low as 0.5 mg can lower serum TSH levels, while 30 mg of prednisone is likely required to significantly alter TSH levels (4). Glucocorticoids appear to suppress release of TSH from thyrotropes in a PKC-dependent manner through the protein annexin 1 (8).

theinvisiblehypothyroidism....

naturalendocrinesolutions.c...

[Rymer in reply to SlowDragon]

I started on 15 mg of predislone and now on 6.5 tapering on a slow taper.

[Pippah45]

Have you visited the PMR/GCAuk forum? I have both and tupically Rheumies are tapering patients FAR too quickly. Latest research shows PMR to last an average of 5 plus years! i am 4 years into the journey and down to 6 from starting at 60 pred. Also hypo and self treating on NDT. Get your blood results and join the HU PMR forum they are really good there and have saved me a lot of aggravation.

[Rymer in reply to Pippah45]

I have been a member of the PMR HU since 2021 and from and find it really helpful

[bikebabe]

I too had a fairly steep taper over 9 mths in my levothyroxine dose from 200mcg to 100mcg with all the usual hypo symptoms. I was wanting to revert but these symptoms (dry skin, constipation, feeling cold, 20 beats per min lower HR) have evened out a lot and although I have extreme fatigue, think that’s probably the stage 4 cancer. I take the supplements advised on here which help. I do have courses of steroids for chest flare ups but don’t have PMR rheumatism. Maybe your body can adjust to the new dose over time. It’s taken me probably9mths to a year to adjust.