I posted in this chat a couple of months ago. I had raised TSH levels (various levels 4.27, 5.32) I am F, 27 years old.
I went to the Dr and had to really push to be put on a trial of Levothyroxine. I was given 25mcg for a 6 week trial.
After about 2 weeks I noticed a significant improvement in some of my symptoms. Namely tiredness, joint pain, better mood and better libido.
However in the last week or two I have noticed the symptoms are returning
I have my 6 week blood test tomorrow and then following this an appointment to discuss the results with a Dr.
I feel as though I may need to be on a higher dose of Levo which may help my symptoms more.
I am worried about what to say to the Dr as I don’t want them to take me off Levo as the symptoms have returned. I would like to be put on a higher dose to see if this will improve my symptoms better.
Just wondering if anyone has any recommendations as to what to say to the doctor so they don’t dismiss me and say I don’t need treatment .
Thanks in advance!
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Brumbris
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Make sure tomorrow to test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
When you see/contact GP to discuss next dose increase to 50mcg
Emphasise how much better you are feeling
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Normally we start on 50mcg, and most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
It is quite normal that when you start levothyroxine that you feel a bit of an improvement but then it feels like you are going backwards again. The 25mcg of levothyroxine helped you a bit, but it is not enough to alleviate your symptoms completely. This small dose has been used up by your metabolism quickly and the symptoms show that you will need more.
I would say to the GP that you feel a bit of an improvement but that the symptoms are still present, so you can justify an increase in medication. 25 mcg is a low starter dose (usually if you have no heart disease, GPs can start you on 50 mcg straight away) and you should get the next increase after your blood test. For best results please have an early morning appointment for the blood draw, only have water (do NOT take your levothyroxine, as this will give you a false high T4) and take your medication after the blood has been taken.
It will take a while until you are on your replacement dose and in the beginning your levels can be up and down a bit, so be patient with yourself. I would be quite vigilant with booking a blood test every 6-8 weeks, so your levels can be adjusted quickly so you can get to a dose where your symptoms will go away and you feel much better.
hi I can’t give you any advice, only my experience. I started on 50mcg and felt better for about 2 weeks then around 6 weeks felt a lot worse than I did before. I did a private blood test which showed that T3 had fallen below normal. GP would not increase because my TSH was in normal range. I came off the medication because I felt so unwell. I felt better and my T3 came back into normal range. I saw a private endocrinologist to see if he might prescribe me T3. He said I was under prescribed. I’ve been on 100mcg for the last 6 weeks, I now have new symptoms and feel much worse that I have gone off the medication again. I just had my test results, my TSH is under 2 which he said I would be symptom free, I am not. My T4 and T3 are on the verge of being under normal values and are actually worse than being on the medication. I’m due to see him again on Monday and I know already he is going to want to increase dosage again. Every time I do I feel more unwell. This post is not advise it’s just my perspective from my experience. I’m thinking now of contacting a Dr from the Thyroid UK site for a second opinion. In my experience , I saw many different GPs and they were all useless, This is why I paid to see a private Endocrinologist who so far hasn’t helped so I feel so lost. I wish you all the best in your journey and I really hope you find a GP that understands, I tried everything and was just dismissed every time.
I have had my results back and my TSH has increased
The high end of the reference range for the Bristol trust is 5.33 so in their view I am still in the ‘normal range’
Although my TSH has increased whilst I have been on 25mcg Levo.
I haven’t spoken to the Dr yet, I just checked my NHS app and the results were on there. I’m not sure what to say to the Dr so I can be put on a higher dose
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For anyone who is on T3 only... When did you realise you needed it? 
