Hi all, Long story short. Having been on T3/T4 for 6 years in Dubai I returned to the UK last July, I had enough meds to carry me to February 2019. Having now been off meds for 3 months and struggling to go through the NHS system I am now looking to go private as a last option. Before visiting a private Doctor I would appreciate some feedback on results taken with medichecks in Sept 2018 and May 2019. Note both blood draws were AM and 10 hour fasted. The September blood draw was taken 24 hours after my daily thyroid tablet, May 2019 was no meds for 3 months.
Sept 2018:
TSH - 1.23 (Range 0.27 - 4.20 mIU/L)
Free T3 - 4.09 (Range 3.10 - 6.80 pmol/L)
Free T4 - 11.700 (Range 12.00 - 22.00 pmol/L)
May 2019:
TSH - 2.78 (Range 0.27 - 4.20 mIU/L)
Free T3 - 5.27 (Range 3.10 - 6.80 pmol/L)
Free T4 - 11.200 (Range 12.00 - 22.00 pmol/L)
from the results above would you advise seeking further help as NHS GP stated the results were good.
Present conditions:
Fatigue , gone from 4-5 days per week in the gym to 1 day per fortnight.
Cold Feet
Low Libido
Poor memory
weight gain (calorie controlled diet and added 4kgs over 3 months)
Your advise is greatly appreciated.
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KCUK
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Have you considered changing GP? A GP who doesn't want to discuss results with you or isn't listening to you is not what you need to get better.
You've answered your own question, haven't you?
Your TSH has gone up and you feel rough..
Also though you've moved from Dubai in February so your vitamin D is probably low, I would supplement that if I were you.
Your GP won't give you anything until your TSH goes up to whatever his/her arbitrary number is, so you have 3 options
1) change GP (but you won't get T3)
2) wait 6 months until your TSH hits their magic number and they give you drugs (but you won't get T3)
3) self medicate.
I caught a BBC documentary earlier about medical cannabis use for pain and how patients are buying it illegally because it's not available, they totally missed the actual point about this though. If a patient is on 7 medications for depression, stiffness, tiredness and pains that will NEVER work, the drug company gets a life-long income! The doctor gets his free holidays and other "perks" from the drug rep.
They don't WANT you to eat healthily, take vitamins, use herbal remedies or natural products that the drug companies can't patent.
You have to be your own advocate and find a GP that hasn't sold out.
Thank you for the reply. I have tried 3 separate NHS GPs but as you know I get the same answer from all, your results are fine, nothing to worry about, maybe you are depressed.
To be fair the last GP basically said the NHS is not set up or have funds for this type of treatment.
Hi KC, why don't you consider asking for private messages on where you can get a supply of whatever you need. What type of T4 and T3 were you taking and what doses? It's outrageous that you can't be prescribed after being on hormones for years. Your body is used to to having thyroid hormone. T4 has a half life of about two weeks so by now it has completely dissipated. You will deteriorate further.
Hi Heloise, Thank you for the advise, much appreciated. I am trying to locate the Specialist I used in Dubai who also left the country last year, I believe he is in the US.
If there are any suggestions on suppliers by PM that would be greatly appreciated.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you did September tests?
If so you look under medicated on T4/T3 then
Obviously levels worse now
You also need vitamin D, folate, ferritin and B12 tested. Plus thyroid antibodies
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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
Medichecks currently have an offer on until end of May - 20% off
Hi SlowDragon, thank you for all of the info. Yes I had taken my last T3/T4 meds the previous day before the bloods in September. In May I had not taken meds for 3 months.
I am presently based in Teesside in the North East.
Your ft3 is pretty damn good if you’re not medicating? If so it seems you can convert T4 quite effectively but this is depleting your t4 reserve- it would be interesting to see your total t4 level .... anyway you obviously need some t4 replacement and soon!
You will need to start on just Levothyroxine. Once dose is high enough to bring TSH under 2 and FT4 in top third of range, and al, four vitamins optimal.....if at that point FT3 remains low.....then look at addition of small dose of T3. Often in 2 or 3 divided doses through day
Levothyroxine is only available by prescription, but very cheap
Liothyronine extremely difficult to get prescribed by NHS due to extortionate price here in UK. Private prescription enables access to cheap T3 from EU
It might be worth trying the GPs again. Make a bullet list of your symptoms and another list of how the illness affects your life. Give it to the doctor and ask politely what they are going to do about helping you.
They have a duty of care to you as a patient.
If that fails you could try writing to the practice manager to complain (again be factual and polite, not to be labelled as a difficult patient).
Thank you Jnetti, I think I have exhausted the NHS route now, I do agree they have a duty of care but I think it’s a financial block with them, they are happy to hand out happy pills and statins etc but thyroid is on the no go list.
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