24/09/18 Meds increased to 100mg after discussing with Thyroid UK that we should aim for the lower part of the reference range 0.2 - 0.5 mU/l
21/12/18 Levothyroxine reduce to 75mg as TSH too low 0.13 and put on Cilest
21/01/19 TSH now 2.5? symptoms returned resulting in going to A&E
Basically as you can see I've been on 75mg of thyroxine and although I've been in the NHS reference range I've still been having symptoms. I asked for an increase and they put me on 100mg and I've been feeling fine. However on the last blood test the results were 0.13 so they said to reduce the amount as it could be dangerous. I agreed to this and they also put me on the pill again as I'm being investigated for endometriosis and they thought it would help my pain. (It hasn't) I asked if it would interfere with my thyroxine which she said no, just keep the two med apart when taking them.
Anyway now I've been on that for a month and at the weekend ended up in A&E with chest pain, anxiety, sickness and the usual stuff I suffer with. Presumably its due to the change in meds and the effect of the pill (which I have stopped taking).
Do I continue to stay on 75mg or ask to increase again to 100mg? Is there an amount in between where I will feel fine, but not over medicating? The doctor I am going to see doesn't like to go against the NHS reference range and told me to ignore the TUK advice
Any help with this would be great thanks x
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Muddy1980
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What you need is free t3 and free t4 tested not just TSH, dosing by TSH is grrrrrrrrrr words fail me, polite words anyway. She is dosing on TSH.... Grrrrrrrrr again. Ask for frees to be tested otherwise there is no way of knowing if you are over medicated or not, just guesswork.
They're ppl whi take different doses on different days, example 75 one day and 100 the next and it may well work for you
That result does not show over medicated. It just shows a low TSH. You need your free T4 and free T3 tested at the same time. Your doctor won't do it. I can guarantee that just from how she is behaving. You need to get a private blood test done yourself so that you can see. Only if your free T3 is over the reference range will you be over medicated. If you felt well on 100 that is probably were you need to be.
She told you to ignore the wisdom of countless patients in favour of her limited experience. Typical.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Have you ever had antibodies tested ?
Recent research suggests Endometriosis and Hashimoto's may be linked
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Ask GP to test vitamin levels and antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
It's often hard to determine what is causing symptoms when you have a few things going on and a couple of coexisting conditions. It's tempting to put it all down to thyroid hormone levels but it could be something else altogether.
I would explain to the doctor that your symptoms are seriously affecting your life and you need to get some stability. If you change your levo dose and become over or under medicated then symptoms are unlikely to appear until about 6-8 weeks later so it's very difficult to definitely attribute symptoms to levothyroxine.
Your doctor may have sound advice given that your situation is complex. Other medication may affect the way you absorb levothyroxine and I think the nature and interractions of this manufactured hormone is generally very poorly understood by health professionals.
Thank you everyone for your advice. I have no problem getting private test done but if I show the results to an NHS doctor they won't act on it or give me the meds I need. I don't want to waste my money only to not get any further With it. X
I'm absolutely fuming after seeing the doctor this morning. She is refusing to change my levothyroxine and said she can't do it as I will suffer from a heart attack, stroke or brittle bones and shes not willing to take the risk.
I then asked if I am to stay on 75mg I need to change the brand as they have given me TEVO which I had a severe reaction to two years ago and ended up in A&E for most of Christmas Eve. I used to have it specified on my prescription No Tevo but this was dropped off when it was changed to 100mg.
The doctor has informed me that its no different and its down to her what the pharmacist stocks. Ive told her they have already said its fine to split the prescription to 50mg and 75mg they just need it signing off by the doctor, which she wont do.
What on earth am I suppose to do now. Not only am I on the wrong dose but also I'm expected to take a brand I react to. I tried to explain about Thyroid UK and she said she wasn't interested in any opinion and papers produced by them as they haven't been signed off by the NHS. She also asked me to hurry up and not ask anymore questions as we had ran out of time and she was on call (wtf???)
I think I need to approach a specialist privately to sort all of this out. I'm based at Durham, if anyone has any recommendations. I only have two weeks of my 100mg tablets left and I have no idea what to do after they are gone.
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