I’m in the process of thinking what the next step is and would really appreciate and thoughts. I had post partum thyroiditis after birth in October 2019, typical over active then underactive around 5 months pre birth.
I have been on thyroxine since as I was very unwell and they were the results that were found to be out of range at the time. I haven’t been well at all since, firstly it took the edge off but I am left with some symptoms that won’t budge and from reading on here my symptoms just don’t always seem to sound like everyone else’s. I know everyone is different but even after speaking to consultants, private and nhs they always say they aren’t typical symptoms. I was never weaned off of thyroxine to see if it helps, could my symptoms be due to not needing thyroxine? I have upped my dose, dropped my dose and regardless of the amount of thyroxine my symptoms don’t change one bit- if anything they probably get worse the more I’m on. 100 is the highest I’ve been on and that suppresses my tsh out of range and makes me feel awful.
I literally cannot work because my balance is off and body just literally feels so unwell and as if I’m an fuzzy from head to toe.
Another thought, do any other autoimmune disorders create similar symptoms? My dad has lupus and aunt ms. I have had an mri and my ANA (lupus) test were both normal.
thanks so much in advance for your advice and thoughts. It’s very much appreciated.
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Courtney96
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These were the latest results you posted on 75mcgs. Correct?
TSH 2.1 [0.27-4.5]
T4 15.7 [11.0-23.0]
These showed you needed more Levo so did you get a dose raise?
It would really help also to see if you are converting Levo (T4) to T3 which is the active hormone. NHS don't test this even if asked sometimes. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
The cheapest test currently available is from Randox Heath which includes antibodies if you're OK with finger prick tests. randoxhealth.com/at-home/Th...
Are you continuing to supplement your vitamin levels, if so what with?
It's going to take time for vitamin levels to come up and be effective in helping with your symptoms.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well.
those results were on 50mcg, on 75mcg my results were TSH - 0.022 [0.27-4.5]T4- 15.9 [11-23]T3 -5.00 [3.1-6.8]
My results on 50mcg are generally TSH around 1.2 and t4 around 16 (these are results from around 6 months ago) I say generally are this as for the past 3 years it has been consistent with those results. Even on 25 mcg my results are in range?
My TPO antibodies were slightly raised during the active thyroiditis phase 56 <32 My thyroglobulins were 270 <115 around a year later And TPO normal I’m just so confused as I am not just experiencing symptoms that are a debilitating in the sense that I can’t work much or having to adjust things to cope, I literally cannot work or do a lot of things at all because of my symptoms. I feel so unwell. And thyroxine doesn’t seem to do ANYTHING. I don’t know if this is normal?
I have done a strict gluten, dairy free and refined sugar diet free diet last year. Along with an elimination diet and noting helps in the slightest.Just have no idea it’s even the problem or I’m treating something that has now recovered?I’ve had scans to show the damage the thyroditis did but they say it’s ‘normal’ for it to look that way after.
Do you always get the same brand Levo at each prescription?
What supplements are you taking? I haven't seen a B12 result for you.
Its not that uncommon for people to think that nothing works and Levo is doing nothing until they start to get vitamins OPTIMAL. Working on gut health can also help.
Did you do the test as per the protocol recommended here? Test at 9am, fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Your FT4 is still very low, I would expect it to be in the top quarter of the reference range. You do seem to be converting though just you need more Levo.
Feeling awful when increasing Levo is often due to low vitamin levels so thats something that will take some time and dedication.
It's strange that your TSH has gone below range with less than optimal free numbers and again could well be due to low vitamin levels.
My brand is always the same, I have also tried a different brand last year which didn’t help.
B12 results have always been good- 622 [197-771]
Yes I’m still taking the better you spray vit D, the spa tone and jarrows formulas methyl folate.
I did all the protocols only thing was it was 9:45 as that was the only time I could get it booked in for. Maybe that affected the results.
I suppose from putting everything you say now and before it is my thyroid doing this, I will be patient and wait for another few weeks for the next bloods. Thank you again Jaydee1507
how is your ferritin? Heavy periods? That can be similar symptoms aches, tiredness etc.
Watch and wait is standard GP practice for post partum but if you have antibodies it’s auto immune and just happened you had a hyper phase triggered by pregnancy, so instead they can follow NICE guidelines and get you up close to 1.6mcg T4 per kg body weight (not a perfect solution but gives a guide) then you focus on gut health and vitamins is the way forward.
Great you are on it, my baby was 18 by the time my post partum triggered autoimmune was picked up 🙈 keep on at the GP, don’t settle for feeling slightly better. 🌱
currently overmedicated but sorting it. I’m on project ferritin, lover twice a week and haem iron supplements on top of everything else. Yes much better than I was …. Seems to be a moving target 🎯 mind you 🌱🦋🌱
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