Here's my latest blood results taken on 20/06/22, 8.40 am, no Levo for 24 hrs (on 50 mcgs), no food or drink:
TSH:1 .2 (0.35-4.94)
FT3: 4.2 (2.9-4.9) 65%
FT4 :13.9 (9.0-19.0) 49%
I had been feeling slightly hypo the week before the test but when I saw the results I thought the levels looked ok, so not wanting to rush things given my history of Graves I decided to continue with the 50 mcgs.
I spoke to my old endo in May (at gp's request I think) and, although she was confused as to why I am now on levothyroxine, she said that I may have blocking Trab and wrote to my gp saying that as I feel better on treatment she hasn't made any changes and will speak to me in six months. She sent me a hospital blood form so that I could get the FT3 and FT4 done.
However, as each day has passed since the test my symptoms have returned: fatigue, anxiety, air hunger, hair loss,acne and now my eyes have started to deteriorate again (swelling and soreness). So I rang my surgery yesterday and requested a dose increase. I thought the gp would ring me but this morning the pharmacist rang and said I don't need an increase and based on my results he should be lowering my dose! He was very dismissive, wouldn't listen to me when I tried to explain that I felt better when my FT3 was 75% through the range in May. He said maybe I could have the test repeated in a few weeks but they wouldn't do the FT3. Eventually he said he would ask a gp to speak to me in the next couple of days.
This, by the way, is the same pharmacist who told me in the first lockdown that I didn't need injections of B12 for my pernicious anaemia and could take tablets!
I'm fed up, I just want to feel my best like I did a couple of months ago without a battle
Any comments, ideas what to say tothe gp would be appreciated.
Thank you.
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the pharmacist rang and said I don't need an increase and based on my results he should be lowering my dose!
What did he base that little gem on? TSH is not low, FT4 and FT3 are not high. If your TSH was suppressed (<0.1) then that would be his argument but there is absolutely nothing in your results that suggest you need to lower your dose.
I'm just wondering what qualifications a pharmacist would have to make such a decision anyway.
We used to have an Advanced Nurse Practioner at our practice, he was able to prescribe, he was way, way better than any of the doctors (but unfortunately he has now left). I was more than willing to put my life in his hands - he totally understood thyroid test results and that as long as FT4/FT3 were in range then suppressed TSH wasn't a problem and as mine has been suppressed for donkeys' years he was happy enough that it just "didn't work properly" any more, he also knew how to treat any lung infections I got which must be dealt with quickly due to my lung disease, whereas one GP gave me a gym referral for 32 sessions (me to pay, not on prescription) when I didn't get better on her prescribed steroid inhaler which I shouldn't have had, I should have had a short course of steroids and antibiotics instead.
But a pharmacist? What training/qualification does yours have to be making that decision instead of a doctor? I'm assuming he's attached to the surgery rather than at the local pharmacy down the road.
Yes, he's attached to the surgery. The receptionist must have booked him to ring me.It's scary, isn't it, that someone, who may not be qualified, can have so much control over our well being!
Can you possibly change your pharmacist or are they linked to the surgery? It would be hard to trust your health to them in the future! Hope you feel better soon.
Thank you. Yes, they are linked to the surgery and I've had arguments with him before regarding B12 injections and when I wanted to change from Teva brand to Wockhardt due to side effects he didn't make it easy! It just makes me mad that someone who's never met me has so much power over my health!
I hope you can side line this stupid individual playing pathetic power games with your health. It’s really shocking they can get away with such malpractice
I think your " old endo " is likely correct regarding the Blocking TR ab antibodies.
The issue is, if anyone who treats you now, understands and knows the significance of this statement and following through with the appropriate blood tests results and ranges.
If the Graves diagnosis wasn't on your records they would probably be accepting of the Hashimoto's diagnosis and know that you will likely be needing full spectrum thyroid hormone replacement as your thyroid gland, over time, becomes further damaged and ultimately fully disabled from this AI disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
I'm just running out of all my supplements but I usually take Solgar folate or Together health B complex, Pharma Nord Bio-vitamin D 5000 , K2 , magnesium and zinc. I don't take them all every day as I've got a sensitive stomach (Coeliac).
I've got to drive from Cornwall to Portsmouth tomorrow to collect my son from university, then back again on Monday for his graduation. I don't want to feel like a zombie on the day or have "thyroid eyes" in all the photos (vain, I know)!
They’re talking bunkum, there’s plenty of room for a dose increase. The TSH is far too high it should be between 0.2 and 0.5 and the free T4 and free T3 in the top third of their range, none of these parameters are being met with your numbers small wonder you feel unwell, you are not optimised.
Your pharmacist needs to read a copy of Dr Toft’s response in pulse qn 6 where he states these numbers. Thyroid U.K. admin can send a copy to you if you email them. Toft is an eminent endocrinologist (now retired). I’d ditch the pharmacist and see a GP armed with that information and demand the dose is increased as you are clearly undermedicated and show them the evidence. Thyroid U.K. are recommended by NHS Choices for support
Thank you, that's what I first felt about my results but when they were marked as "normal, no action required" I doubted myself and thought maybe they're ok-ish for now. However, my body has been trying to tell me my levels aren't right for a while, so I eventually listened, asked for an increase but get blocked by this arrogant pharmacist!
Anyway, he said he would ask for a gp to contact me so I will chase that up. Armed with all the facts I won't take no for an answer!
What I cannot comprehend is why it's all so difficult. I told him I wasn't asking for an increase for fun. Why anyone would want a patient to remain unwell is beyond me!
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