Changes in T4 medication levels

[FloECha]

Hello, was hoping someone might be able to point me in the direction of some more information about underactive thyroids.

I've had an underactive thyroid for 13 years now and for the most part am managing things well. Earlier this year I saw an increase in my thyroid symptoms (increased fatigue, not being able to recover from exertion, brain fog etc.) and when I had my blood tests done sure enough my TSH levels were elevated.

I've increased my dose and the symptoms have eased, but I was wondering what might cause me to require a change in dose? My full blood count showed a high platelet count, which the GP is investigating but I feel it might be due to inflammation connected with my thyroid symptoms.

I've been able to be more active over the last 9 months with swimming etc. would increased activity/building muscle need me to have a higher dose? Has my thyroid been working a bit and this bout of inflammation caused it to lessen in function and therefore I need to take more T4? I was taking more supplements, could they have been helping my body to do what it needs and therefore need more T4?

Everything I can find to read about focuses very much on people who have just been diagnosed and getting their dose right and I can't find very much information about understanding the condition longer term. It sort of doesn't matter, I've increased my dose and I'm feeling much better, but it would be good to know what is going so I can watch out in future. I've been working so hard to get well, do more swimming and feeling great so it was frustrating to have 6 weeks where I was experiencing all my symptoms again

Thanks

[SeasideSusie Remembering]

FloECha

Is TSH all that was tested? If so that's inadequate, it's not a thyroid hormone so we need to test thyroid hormones - FT4 and FT3 - to know our thyroid status.

Looking at your profile and seeing your first post on the forum, it would appear that you have autoimmune thyroid disease (Hashimoto's) and typically this causes fluctuations in results and symptoms, so this could be one reason.

Also, TSH has a circadian rhythm and varies during the day, it's highest early morning and lowers throughout the day. To compare results and to avoid any unnenecessary change in dose we should always do our thyroid tests as follows:

* Test at 9am

* Nothing but water before the test to avoid any food or drink affecting TSH level

* Last dose of Levo 24 hours before test

* No biotin, B Complex or any supplement containing biotin for 3-7 days before the test as this causes false results

Hashi's can cause gut/absorption problems and your past posts show many problems with nutrient levels. Are these all optimal now, ie

Vit D - 100-150nmol/L

B12 - top of range for Total B12 and if Active B12 is tested then 100+ is the aim

Folate - at least half way through range

Ferritin - some experts say the optimal level for thyroid function is 90-110ug/L

[FloECha in reply to SeasideSusie]

Thanks SeasideSusie - yes, more than just TSH was tested, not T3 as I can't seem to get them to do that, but a full blood count and various other things, just didn't have my results to hand to add. They didn't test ferritin (why I don't know as they normally do that with TSH and T4) but I think he has done that yesterday. I think this needs to be higher generally but I'll go back to them on this when I get the results. I think I'm now optimal on all those other things you listed, I get B12 injections and supplement the others. And thanks for the list of how to test, I do all of those as well.

I'm mostly just curious about what causes the fluctuations, doing all I can to be optimal but it would be good to know if there is anything else to watch out for. It's such a pain being chronically ill 🙄🙄

[SeasideSusie Remembering in reply to FloECha]

I'm mostly just curious about what causes the fluctuations

This is just typical of Hashi's. I don't have Hashi's so no personal experience, but from reading the forum I understand that this is where the immune system attacks and gradually destroys the thyroid. There is no pattern, you can be stable for some time then suddenly get an attack and I don't know but I imagine some attacks are "milder" or less noticable than others.

When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. This is referred to as a Hashi's swing. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.

If you've not seen these articles before they are all to do with Hashi's:

chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...