After waiting for my medical records for a while, now I can start building my case to convince my Gp and,or Endo to lower my Levothyroxine and give me a low dose of T3.
After sending you my private blood tests 3 months ago, I have spoken to my Gp who has said she will look in to me being prescribed T3. She also said she wouldn’t prescribe anything that they couldn’t test for. Eg NHS doesn’t yes FT3. I asked if I paid for private blood tests and gave her Thyroid U.K.’s findings would she prescribe it. Her answer was I would have to see a Endo.
Looking back at my records on July 20th 2015 my Endo trialed me on 75mcg Levothyroxine and 20mcg liothyronine 1/2 a tablet twice a day for 3 months, at my request. I wanted to see if my symptoms would improve. Looking back on it now if he didn’t test my FT3, how would he know what my levels were?
At the end of the trial my TSH was suppressed to 0.016 (0.35- 4.5) FT4 13.5 (10.5-26 ). No FT3 test. It didn’t help me so he took me off it and raised my Levothyroxine back up to 100mcg. In his words “ I can’t help you anymore. You can imagine how that made me feel.
My Gp has said to exercise and try to lose weight. That’s what sparked me into pursuing this again. I’m am hoping my Gp with come back with some encouraging words. Any input would be greatly appreciated.
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First step is to get FULL Thyroid and vitamin testing ...via GP or privately
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Presumably you have Hashimoto’s?
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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
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 you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Yes, how on earth could that Endo tell if T3 was working for you if FT3 was never tested? I’m going to guess that the reason it didn’t work is because your levothyroxine dosage was too low. 100mcg Levo and 20mcg liothyronine might have made all the difference. You were set up to fail.
One thing—the NHS absolutely can and do test FT3, so if your doctor told you that the NHS can’t, they’re wrong. Or attempting to fob you off.
You’re on the right road. It’s outrageous that we have to go it alone soooo much, but that’s how it’s been for quite a while now, I’m afraid.
"exercise and try to lose weight"...amongst the most depressing (and ignorant) words medics can say to thyroid patients along with " I can't help you any more".
Absolute rot! Grrrrrr!
SlowDragon has already given you excellent advice...she is more knowledgeable and experienced than most endos, many of whom are diabetes not thyroid specialists specialists.
Failing to test FT3 made taking T3 pointless and the dose was probably too small to be effective anyway.....or it gave this endo an excuse to withdraw T3.
Follow the advice offered here, it works. I can vouch for that.
Unexplained weight gain is common in hypothyroidism and it is usually due to an insufficient dose of thyroid hormones. Unfortunately doctors seem to blame us for 'eating' the wrong foods instead of our low metabolism due to being hypo.
You should try to get a Free T3 and Free T4 blood test and then you can take the next step and consider members' comments/advice. Usuallly doctors wont do the 'frees' but you can get a private one through the recommended labs who do home finger pin-prick tests and you shoud be well-hydrated a couple of days before.
Are you aware that all blood tests should be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours from levo and 12 hours from levo.
Have you considered sourcing your own NDT, glandular, or T3? Drastic measures when our medics are ignorant, but worth considering if you know your micronutrients are all in order.
These doctors! - weight gained by patient and GP tells her to lose weight?
If not on an optimum dose of thyroid hormones that make us feel well again and we have to reach an optimum level that relieves all of our clinical symptoms and reduces weight. We also feel well again . Free T4 and Free T3 should be tested but NHS probably wont, which means we need a private test.
My story would be too long to explain what I went through , after buying my own t3( advice from private doctor) I eventually got t3 on NHS but that was after many years of going to referral s private and nhs
Many on this forum have gone through unbelievable strain - the majority for whom a diagnosis was a long time coming. I am sorry you've also had your struggle.
Also many members have long and sorry stories - that get even longer 'after' they've been diagnosed.
I hope NHS didn't withdraw your T3 as they did to many patients. What a disgrace!
It is well seen that doctors ( before blood tests and T4 ) diagnosed us upon our symptom alone and we were given NDT, slowly increased until symptoms resolved. All done by knowing clinical symptoms.
Big Pharma would be very upset if blood tests were now only used for the basic diagnosis and if thereafter the patients' clinical symptoms took priority and being prescribed small increases until symptoms were relieved. Also the freedom to prescribe alternatives if the one patients are taking isn't improving their symptoms.
For the BTA et al to state that they've withdrawn NDT (containing all of the hormones a healthy gland would) without notice and for no good reason and no warnings even though it saved lives since 1892 due to symptoms alone. That decision just goes to show the attitude given to sick people who're relying upon doctors to know and help them relieve symptoms. Why only diagnosing when TSH reaches 10, and many patients could be very symptomatic by then but ignored. Many patients still complain due to doctors believing that TSH has to reach 10 before patient is diagnosed.
The fact that they also did not respond to at least three reminders from Dr John Lowe - Adviser to TUK - for a response to his Rebuttal. Many still recover their health on NDT but it isn't prescribed in UK unless a private doctor does.
When we take thyroid hormone replacements, it is more beneficial for us, the patient, to take note that our clinical symptoms are being relieved because that's the main aim. That they are relieved and we feel well again and energetic.
All clinical symptoms are supposed to be relieved but doctors - in this modern era - seem to have been trained in that TSH is to be 10 before diagnsoing - they have no clue of clinical symptoms at all but the aim is to relieve all of them.
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mixing different t3 meds
Can I decide whether to go up on meds with only a TSH reading (GP won't do T4, T3)?
My nhs Endo has prescribed T3 trial 
Getting ready to begin T3... YAY... but...
Alternative to Thybon Henning T3
