Hi, I wonder if anyone can help me please. I got tests done to check my iron as I am going to have an iron infusion next week. They also checked my thyroid and the results are a bit high. (See pic)
For context, i have Hashimotos and am Hypothyroid. I am on 175mcg daily of Levothyroxine and 5mcg daily of T3 from a private dr. I have been on T3 for about 5wks.
I am seeing him again on 21st of this month so will show him these results then. However, I feel really good. I don't feel super energised but nor do I feel exhausted. And I don't feel any of the usual symptoms of Hyperthyroidism.
I was thinking of cutting my T4 dose down for a few days in case.
Has anyone else experienced this? What mechanism causes this?
Thanks
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sugarbee1981
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I don't think it's the small amount of T3 that id causing these high hormone levels, it's luke to be your high levothyroxine dose and / or possibly Hashimoto's.
I would stop your levothyroxine for about a week to let your fT4 come down, this will also lead to a lower fT3. You could then resume on a lower dose and see how you go.
Thank you, that's actually very helpful. I had been on 200mcg until I started the T3 also, then my thyroxine was reduced. Was super surprised to see it so high. I can't get in to see the dr until then. Do you think I need to contact him to let him know before then? I posted on a fb group and while well meaning they seemed to think it was an urgent thing.
I think it would be a good idea to perhaps contact him and perhaps send a copy of the results and say you e.g. plan to stop your levothyroxine for four days? and then resume on 100? mcg to see how you do. You could say that if you start to feel hypo you would like to have the option of going back up a bit.
I think this would show that you are sensible and taking the initiative. It might buy you more flexibility in the long term and stop him from panicking. It also puts you in control.
Yes that's a good idea. He is a very good endo with a specific thyroid interest so I think he knows his stuff. I will try this thank you. I have been more hoarse etc so think it may be a Hashi flare alright. So knowing me I will go more over active I am very overweight too and my top dose by weight is 250mcg so I didn't even think 175mcg was high for me. Its so hard to get a balance. Thanks for your help.
This test appears to have been carried out during a Hashi swing hence high hormone level...your FT4 is 43.2 (11.90 - 21.6) with FT3 7.13 (3.10 -6.80) Am I reading that correctly?
200mcg is quite a large Levo dose which may already have caused overmedication before the swing. Over range FT4 is not recomended as it can cause other problems
Has poor T4 to T3 conversion been established ....hence the T3?
I would stop the T4 for a few days until the swing passes and thyroid levels fall back again then build up levo again from maybe 75 or 100mcg
Just had a quick look at your previous posts ....you've had some very odd treatment by medics whose knowledge seems questionable
Hi, thanks for reply. I haven't posted here for years. My thyroid was doing ok up until Sept 23 when a GP lowered my dose based on my TSH being 'too low' for their liking. At that point I was on 200mcg and feeling good but they dropped it to 175mcg. Then from Jan this year I had a 3mth long menstrual bleed and felt shocking. My GP said it was likely my adenomyosis but I knew I was undermedicated for thyroid. I had been referred to NHS Endo last year and it just so happened that my 1st appt came about late March 24 so I went and the Endo was SO rude, said my results were 'unremarkable ' told me I had to get my anxiety under control. He said the bleed was a gynae issue and my hoarseness an ENT issue and told me to go to boots and buy their weight loss (Saxenda/Ozempic) programme. I spent the whole evening in tears then as felt so unheard. He took bloods that day and then wrote out to my GP and me telling me to up my meds from 175mcg to 225mcg. I just went to 200mcg myself as I was concerned to get overmedicated.
I am overweight (currently around 21stone) but I have tried so many lifestyle changes, diet medications and nothing seemed to help me.
I looked up the private Endo I go to now and he explained to me that in his experience majority of Hashi patients have conversion issues and a wee bit of T3 can be enough to help. He also told me to supplement selenium etc. He got me to stay on 200mcg for a month, then reduced it down when he put me on the T3.
. I have had real cr@ppy treatment from drs, I believe alot is my weight and while alot of trauma and comfort eating is the cause(my fault I know) I do think they haven't helped much. I have been iron deficient since I was 7, I am 42 now. Have paid privately for infusions, private gynae so I could get a diagnosis and try to treat myself and now private endo.
Sorry for the novel but I just felt it was worth explaining. I really appreciate your time
Sugarbee, please try not to blame yourself for comfort eating. It’s not your fault, it’s a symptom of your distress at being let down by people who should be helping.
I am struggling to read these results accurately. Can you post them in the comments again? You may need to write a word or 2 to make it post.
How did you take this test?
Time of day?
When was last dose of levo & T3 prior to the test?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before 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).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
I had this test done at 4.10pm yesterday. I was getting the test done for my ferritin as I am getting an iron infusion next week.
I wasn't aware they would be testing thyroid too (it was a private blood draw) otherwise I would have booker it for early morning.
I had my T3 and T4 at 9am that morning. 5mcg of T3 and 175mcg of T4. I don't take anything with Biotin in. I had not eaten yesterday when I got the test as I try to fast every few days.
I realise you were caught on the hop but are you aware that there should be a gap of 24hrs between test and previous dose and 12 hours for T3....that 4.10pm test probably also caused your Frees to be elevated
Here, we recommend to test at 9am, dosing as above and at least an hour away from food and drinks....
Doctors tell us nothing.....I took my levo wrongly for many years because all my then GP told me was " this little white pill is all you need to take for life to feel well". It nearly killed me....and then I found the real experts here and discovered the actual problem.
Follow jim's advice in the meantime re Hashi swing/ medication.
We have to learn and take control of our treatment.....
Thought you would be sugarbee.... it was just in case you might not be!
You are in charge you don't need to accept anything you are concerned about....it's called Patient Autonomy ....my old GP kindly told me about it it when I decided to self medicate with T3-only
Thanks, I will order a test from medichecks then I think as I know if I go to GP they will whip my levo really far down and I will be at square one again.
told me I had to get my anxiety under control... and told me to go to boots and buy their weight loss (Saxenda/Ozempic) programme.
🤬🤬🤬🤬🤬🤬
SMH what is wrong with these people!!! I’m sorry you (or anyone) has to be subjected to such uncaring misguided garbage.
Glad you’ve found a better GP, and if you add the collective experience of this board to that, you’ll be on your way in no time : )
edit: oh, and eliminate the words “it’s my fault” from your vocabulary!!!!!! I don’t care how much you do or don’t eat! You, we, have a chronic autoimmune disease that is hard to manage on a good day much less while sticks are thrown in spokes on the way to healing. Be kind to yourself 🤗!!!
edit #2 and what I wouldn’t give to know the incentives/kick backs these doctors get for each ozempic rx!
With medics like these who needs medics. When will these people be held accountable for their outrageous behaviour? Why are they protected? Our taxes have educated them etc etc. Frankly they should be sacked.
I agree really on the kickback thing but think it's also lazy doctoring and just assuming weight caused everything. Another example- I waited 4years for my first NHS gynae appointment and it was in Sept 23. (The waiting lists are terrible here in NI)I had already gone private and been diagnosed with Adenomyosis and suspected endo after paying for a scam. Got to first gynae appt on NHS and she also suggested trying weightloss medication. I was a bit taken aback so asked her would it help my condition. She said no. So why the hell are they suggesting it?
In a way, I get an Endo suggesting but it's out of gynaes remit totally.
But the NHS endo also had zero clue about my thyroid. My mum actually wanted me to make a complaint about him but I haven't the energy.
Yes, I thought I put that in the post, apologies if not. That's why the bloods were taken- I am getting a private iron infusion next Thursday through the Iron clinic. They are doing a pop up session here in NI. I've had 2 before but none since Oct 2022
Unfortunately I have gut issues, I also have Pernicious Anaemia, I have Adenomyosis and suspected Endometriosis on top of Hashimotos and supplements don't work for me I struggle to absorb and as my blood loss is too much. I was on iron for 9mths before and my ferritin actually dropped. I try to use infusions sparingly- this will be my third. I am sorry if I appear a Negative Nancy. I just have so many little niggles that affect each other and make me feel rubbish. I feel like when I balance one something else goes.
Yes - totally understand, and I’m glad you are aware, some people are not and doctors do a terrible job of informing people about the way iron works! I’m glad you are able to get one since you need one!
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