Good morning, I wonder if anyone could give me some advice for a telephone appoint later today.
I was diagnosed with hypothyroidism in feb 2018 and have never felt truly well.
I have also had endo consultation in 2020 and he could not find any basis to give me T3
After never feeling particularly well on 125mg of Levo so in January 23 ago I self sourced 25g of T3 and reduced my Levo to 100mg, I felt fantastic and had no signs of over medicating and can honestly say it’s the best I’ve felt since diagnosis
I ordered my prescription online in sept 23 and as my blood test was due on December I came clean and advised them in the comments I had self sourced and therefore was only taking 100mg.
They refused my repeat prescription and made me go for another blood test, also to check my T3 levels.
I didn’t take my dose before the test and fasted
9th oct 23.
TSH 0.01 range (0.30-6.00)
Free T4 13.1 range (10.4-24.5)
They didn’t to T3 so it was a pretty pointless exercise!
After a telephone consultation following these results, I agreed that I would continue to take my 25g of self sourced T3 and reduce my level to 75mg of Levo, I felt fine for about 5 weeks then was hit with all the usual hypothyroid symptoms, tearful, unable to cope with any stress, unmotivated, nails breaking, cold etc.
I retested again on the 11 January
I didn’t take my dose on the morning of the test and fasted
Results.
TSH 0.04 range (0.55-4.48)
Free T4. 11.08 range (10.4-20.0)
T3. 3.6. range (3.5-6.5)
I don’t know how to work out % through range
I want an increase back to 100 mg of Levo but I want to be ready to overcome his objections.
Can anyone please advise me.
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Georginaschoey
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After a telephone consultation following these results, I agreed that I would continue to take my 25g of self sourced T3 and reduce my level to 75mg of Levo, I felt fine for about 5 weeks then was hit with all the usual hypothyroid symptoms, tearful, unable to cope with any stress, unmotivated, nails breaking, cold etc.
Little wonder you feel unwell...your symptoms returned because the reduction has left you abysmally undermedicated with FT4 and FT3 scraping along the bottom of the reference range.
They failed to include an FT3 test and no doubt failed to understand that T3 lowers TSH giving a result below the reference range.....and on that wrong basis they decided you were overmedicated and cut your dose. Absolute nonsense!
Once medication is initiated TSH is no longer a reliable marker!
Refuse to be dosed on the basis of TSH and FT4 alone
A result sitting anywhere in the ref range is not " normal" as many medics seem to think. We aim to have results sitting roughly 75% through the ref range which yours are absolutely not.
Free T4. 11.08 range (10.4-20.0) is 7.08% through the ref range
You are severely undermedicated and need to have your dose returned to where you felt well
Guidelines for Medics show that they are supposed to consider symptoms when making a diagnosis....too often they rely on lab results only and then interpret them wrongly!
You can print a list of symptoms from here, tick yours and give it to the doctor!
Their ignorance regarding T3 is shocking. It is one of the most important hormones in the body and if it's deficient almost any part of the body can suffer. Yet, it seems to scare them!
You were not properly tested before the decrease and that decrease has resulted in hypothyroid symptoms, so insist that you are returned to the pre-test dose where you felt well, and then tested after 6 weeks.... before/if any decision to adjust your dose is made.
It's your body and you know it better than anyone else....particularly a doctor on the end of a telephone line!
Make notes of the points DippyDame has typed that you feel are most relevant. And don't let him bamboozle you on the phone. Absolutely insist that he reinstate your 100mcg a day of Levo. Stress how well you felt on it + the T3 and then stress again how horrible you feel now.}
You tried it his way. It didn't work. Now he must let you go back to your way, which did work.
Thank you. I will do. It’s so stressful every year, my TSH is always low and I know how the conversation will go! I am quite strong minded so wont be talked down, I just wanted some extra reassurance
Its ridiculous how OCD they are about TSH. I drastically cut my dose of Levo between October and December as I had an NHS blood test in early December.
I knew my GP surgery would panic about my low TSH so in an effort to prevent them lowering my dose I took drastic measures.
Felt really crap by the time my blood test arrived. The lengths we are driven to go to just to appease GP's who very probably know less about thyroid than we do.
Exactly Sparklingsunshine. I don’t actually understand why they don’t take our word for it! I have absolutely nothing to gain by over medicating, I’ve tried drastic measures myself every year but I’m not doing it again, if they dont give it to me I will tell them to get lost and self medicate 😂
If I wasn't reliant on the NHS for the Levo I'd tell them to get stuffed as well. I try and use them as little as I can get away with. I haven't told them I take T3 or Low Dose Naltrexone. Nor do I intend to unless I absolutely have to.
Hi following in from my earlier post, the GP was sympathetic to how I was feeling, but she will continue to prescribe me 75g but is getting in touch with the endo to try and make sense of my results and will call me back within 7 days with a view to increase so I’ll wait for the outcome…
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