Struggling

[Popeye44]

My understanding GP left our practice a few months ago. I was asked to have a blood test as an annual medication review. My TSH had climbed from 0.46 to 1.24 (0.4-4.5). I was taking 50mg Levo but was tired, my hair was falling out, I felt cold and my weight had climbed by 5kg. The GP rang to ask me to go on statins. I politely said "no. I'm hypothyroid so my cholesterol will be higher than your required normal level." I went on to say that my thyroid test showed an increase in my TSH and would Iike to increase my medication due to my symptoms having returned. We then had all the stuff about going hypo, damaging my heart and bones etc. I quoted the NICE guidelines that showed I was on a starter dose and he caved in. He agreed to 12.5mg increase and issued my prescription for 50 and 25 mg tablets. The 12.5mg made no difference so I increased to 25mg. After 3 weeks I felt great, the first time in years I had any energy, my hair stopped falling out, I had eyebrows and lashes growing, I was sleeping well. Brilliant!

I ordered my repeat prescription stating that I had increased to 75mg and could my prescription stay at this please. My prescription order was rejected. No contact to advise me, I found out when I went to the pharmacy to collect it. I had to fill in an online form and wait for them to respond. 3 days later the practice pharmacist phoned me. By this time I had done a Blue Horizon test. The GP won't accept these results but she requested them and although T4 and T3 were finally looking better, my TSH was too low according to her and she cut my prescription back to 62.5mg.

I then went on a three week holiday. I'm 10 days in and yesterday my energy levels had dropped so I was pushing myself to walk my dogs and felt sleepy all day. My hair has started dropping out again. I'm struggling. I'm booked in for a blood test on my return from holiday to see if my TSH has come up. How do I get through to this pharmacist that I feel rubbish and that TSH isn't everything?

Test results attached.

[SlowDragon Administrator]

Make sure to wait a minimum of 8 weeks after any dose reduction

How long after increasing to 75mcg was this test done

ALWAYS test early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Ideally you would have waited at least 8 weeks

Your test results above show poor conversion rate

What vitamin supplements are you taking

[Popeye44 in reply to SlowDragon]

I followed all your advice SlowDragon. My tests were both done (GP and private) at 8.30am with no meds taken. The GP test was after 1 year, my private test after 6 weeks. I take vitamin D, K2, B complex (stopped 5 days before so no biotin), Ubiquinone Q10, Selenium, Glucosamine with MSM.

I only did the private test because I had so much energy I wondered if I was on too higher dose.

[SlowDragon Administrator in reply to Popeye44]

Approximately how much do you weigh in kilo

75mcg per day is low dose unless very petite

Free T4 (fT4) 19.3 pmol/L (12 - 22) 73.0%

Free T3 (fT3) 4.6 pmol/L (3.1 - 6.8) 40.5%

Ft4 about perfect

Ft3 too low

improving conversion and/or adding T3 would be next step

[Popeye44 in reply to SlowDragon]

Going by my weight as per NICE guidelines I should be on 125mcg.

[SlowDragon Administrator in reply to Popeye44]

So I would suspect once you have been on 75mcg daily for 4-6 months your metabolism would settle at better levels and you would quite likely see TSH creeping up and be ready for next increase in dose levothyroxine

[SlowDragon Administrator]

How do I get through to this pharmacist that I feel rubbish and that TSH isn't everything?

You could try different GP after next test results are back

If still no joy …..then see endocrinologist but pick one carefully. Most are diabetes specialists

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[Dahliasanddaisies]

As slow dragon has said, change GPs or if you can afford to GP private, then do. I was sick of the stupid TSH dance that's left me unwell for years. Now seeing a private Thyroid GP, who actually understands and is working with me to find the best solution. Worth every penny and I don't have the fear that my NHS GP will just take away my medication based on her limited understanding of Thyroid issues and TSH results.