First time posting, hope someone may be able to point me in the right direction...
I had a total thyroidectomy Feb 2018. Have spent the last 12 months gradually having my levo increased to now where it's 150. At no stage in the last year have I been without hypo symptoms ...brain fog, poor memory, cold hands and feet, postural hypotension, aching joints, depression. If anything, I notice more now than I did a year ago.
In June 2018 blood results on 125 levo
TSH 4.77 (0.3-4.2)
Free T4 22.5 (10.6-23.2)
Latest bloods 13/2/19
TSH 0.13 (0.3-4.2)
Free T4 27.9 (10.6-23.2)
GP also tested kidney, liver function but they must be fine. Folate was found low so 5mg daily prescribed. Have been instructed to reduce levo to 125 Mon-Fri and leave 150 Sat-Sun.
How can my ft4 be so high while still suffering so many hypo symptoms? I'm guessing that I may not be converting well...
If I reduce back to 125 will my symptoms not just get worse??
Thank you anyone who may be able to help😊
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Frangipani14
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It is highly likely that after a TT, especially if that was followed by Radioactive Iodine (RAI), that you will never feel well on levo alone. I believed it was my own fault for 8 years before I opted for NDT when levo left me ill. It is possible that you may feel somewhat better taking combined levo/liothyronine but your best option in my opinion is to get some NDT.
I would certainly NOT recommend keeping secret from your doctor the fact that you are taking NDT or to accept any nonsense from him if he objects to your decision - just try to avoid swear words or throwing anything heavy in his direction.
I had TT for a large multi nodular goitre so no RAI. I dont seem to be able to find much online for TT unless it's cancer related. I will do some research into NDT, not sure about how to get it where i am. Its good to hear that you're doing well on it though, my GP had advised against it.
I agree with you . Be nice and courteous and complimentary you are working as a team on your behalf it gets you so much further when working as a team . But be firm in a nice way so your Dr knows you mean it and you know what your talking about . Also be prepared . *Knowledge is Power *.
How can my ft4 be so high while still suffering so many hypo symptoms? I'm guessing that I may not be converting well...
You need FT3 testing at the same time as TSH and FT4. If your GP can't or wont do it, then do a private test with one of our recommended labs. It's very likely that your FT3 is low, in which case your high FT4 means that you will be making reverse T3 rather than Free T3 and this needs addressing. Reducing Levo will reduce your FT4 but will also likely reduce your FT3 as well, and you will become even more symptomatic.
SeasideSusie thank you so much, you just confirmed what i was thinking! My understanding is that my TSH level means nothing as i have no thyroid. I will try to convince my Dr to order a t3 test, but I'm not optimistic. I think I will look for a private lab for a full thyroid test.
Have a look at Medichecks and Blue Horizon. Both do fingerprick tests, or you can order a venous blood draw test but you would need to pay extra for the blood draw.
Medichecks: medichecks.com/thyroid-health Code THYROIDUK gives 10% discount on any test not on special offer. If you want the full thyroid panel plus all important vitamins then choose Thyroid Check ULTRAVIT
Blue Horizon: bluehorizonmedicals.co.uk/t... If you want the full thyroid panel plus all important vitamins then choose Thyroid Check PLUS ELEVEN
Actually, your TSH means as much as it does to anyone else - thyroid or no thyroid. It is a pituitary hormone, and the pituitary doesn't know you've had a TT, it only know how much thyroid hormone is in your blood. And, with a TSH of over 4, it was saying there wasn't enough.
It's now gone down to under 1 because your FT4 is so very high, and that's when it's usefulness ends. It cannot say whether there is also enough T3, it doesn't distinguish between the two to that point. So, you need your FT3 tested, as SeasideSusie says. But, if your TSH goes high again, do take notice of it, because it will be telling you that you're under-medicated again.
Just as a point of reference a fully functioning thyroid would be supporting you, on a daily basis with approximately 100 T4 and 10 T3.
It just seems logical to me that after a medical intervention, either surgery or ablation, both these vital thyroid hormones need be on your prescription.
Some people can get by on T4, some people simply stop converting the T4 to T3 at some point in time, and some people simply need both these hormones dosed and monitored independently to restore both T3 and T4 into the upper quadrants of their ranges and find a level of wellness that is acceptable to the patient.
I think you are probably right in that you are not converting the T4 into T3. but we need a blood test showing both these hormones and their relevant ranges.
As you have probably been hypothyroid for some time it might make sense to bite the bullet and include with the thyroid panel, ferritin, folate, B12 and vitamin D as if these vitamins and minerals are not optimal, thyroid hormones do not work effectively.
Post the results along with the ranges and people more able than me will advise of your steps back to better health.
Hi pennyannie, i really appreciate your feed back...im still learning about all this and it has my head muddled! I was euthyroid before TT so wasnt on any meds. Ive just started folate and vitD today so hopefully that might help a little? I've a phone appointment in 2 weeks so will push my GP for a full thyroid panel then along with the others you suggest. In the meantime will look into getting the private tests done also.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common. These should be retested regularly, many need to supplement regularly to maintain at optimal levels
After thyroidectomy Highly likely you will need the addition of small dose of T3.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
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
Suggest you get FULL Thyroid and vitamin testing
Come back with new post once you get results
Likely to need referral to T3 friendly endocrinologist once you get vitamins optimal
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
Oh my, thank you SlowDragon...as with the others who have answered i really appreciate your advice😊
I must admit to not having really done my homework before i had TT, i was referred to an NHS ENT about 3 years ago and somehow they lost my file after my first appointment. It was 2 years before i heard anymore at which point i was fast tracked for surgery. Post surgery i had one appointment with the surgeon and then was back to just my GP. I was told that levo would be all i needed. I had no idea how wrong that was! Going to spend this week trying to get tests organised and doing more research.
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Total thyroidectomy- T4 levels and thyroxine levels
Graves to Hypo symptoms 
Over medicated but hypo symptoms
On thyroxine 20 + years, now v high t4, low t3
