So as you can see my TSH has unhelpfully popped into the so-called normal range.
Explained to GP still feel unwell. She would not increase levo but would ask for advice and guidance from endocrinologists, asking them to look at all my results as I kept trying to point out the discrepancy of the tsh and t4 and possibility of Central hypothyroidism.
In the meantime I will continue on 25mcg Vencamil. (Nice side note my pharmacist swapped the teva for vencamil).
My ferritin level has dropped again despite eating pate every other week and meat etc.
Also my basophils at top of range- not sure if it can be related to b12 deficiency so thinking of asking on PA unlocked.
Any ideas what I should do? My T4 is 25.8% and T3 is 44.6% now so that is better than it was. However the tsh readings in relation to t4 readings do not seem right. Can the pituitary stop and start in it's responses?
I have a private medichecks thyroid blood test still to book. Not sure when to book it- after 2 more weeks, so after 10 weeks of levo or to wait till 12 weeks of levo?
Also is there a way to guess when you might catch the anti bodies by tracking symptoms in some way?
My best guess from all your lovely help and reading hundreds of posts is I might have hashimotos with some element of central hypo and possibly a b12 issue (have had pins and needles in head face hands and feet continuously since may 2022 and sporadically before that since 2017). An intrinsic factor ab test was negative last year.
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I kept trying to point out the discrepancy of the tsh and t4 and possibility of Central hypothyroidism.
You cannot tell if you have a pituitary problem once you are taking thyroid hormone replacement because the HPT axis is broken. Pretty sure the pituitary does not stop and start it's response. But, in any case, the TSH is not really relevant. It's only a rough guide to thyroid status at best. And your doctor certainly shouldn't be dosing by it! Is there another doctor you can see?
You might do better if you ate paté more often. Once a week is hardly worth eating - unless you eat half a kilo at a time!
As for the antibodies, they tend to be highest during and just after an immune system attack on your thyroid, when they come along to to clean up the blood. So, if you start to feel hyper, and/or your levels come back unexpectedly high, that would be the best time to test antibodies.
Thank you for replying grey goose. Re the pate I meant I ate it every day for a week for lunch then had a week off. Though not eating half akilo 🤣.I had asked gp re central hypo after the blood tests from Oct 24 and Jan 25 both before any medication, following suggestions from here. The Dr said we would wait for the next blood results after starting the levo.before she would think about it.
Oct 24 tsh 6.2 (127.5%) t4 12.4 (33.8%)
Jan 25 tsh 5.55 (113.3%) t4 9.7 (6.9%) and t3 3.4(25.1%)
Than after levo
Mar 25 tsh 3.17 (61.4%) t4 11.6 (25.8%) and t3 4(44.6%)
My query originally was that tsh dropped when t4 had dropped when surely it is supposed to rise. (Oct and Jan)
Now the tsh has responded by dropping as the t4 has raised slightly, but seems to have dropped more than I would expect.
Yes both of those before taking levo, they were my 2 results over range that let me start levo.Jan test was 8.50 am and the Oct one was about 9.30 am I think.
OK, so based on those two results without levo, it does look like you have a sluggish pituitary. But I don't suppose your GP has ever even heard of Central Hypo! They don't learn about it in med school because it is considered to be very rare. It isn't. But anything can be rare if you don't test for it.
So, this GP you're dealing with, does she know what your results were before starting levo? Even if she does, I don't suppose she understands the implications. Have you tried writing to her, a polite letter laying out the problem and how TSH in your case is totally unreliable? Include a few references. A letter often has more effect than trying to talk to them when they're busy looking at their computer screens.
Yes, I had pointed out all the details. To be fair to her I have just seen the request for advice and guidance on my app, and she has carefully included all the figures and my concerns and put it as urgent. (I'm not necessarily holding my breath over endo response being helpful, but at least it is documented)!! Thank you for all your care 😊.
Or see thyroid specialist endocrinologist privately
Roughly where in U.K. are you
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg
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 so that might eventually transfer to NHS
Hello Slow Dragon,Thank you for replying. I did try really hard to get increased dose.Asked several times in different ways, but Dr said they didn't want to risk over dosing me as it gave symptoms too. When I said an extra 25 mg surely wouldn't take my low T4 that high she said not happy to do without endo say so. I did manage to get her to ask for urgent response.
I am in Buckinghamshire. I am 71kg.
I am thinking of seeing private specialist. Need someone who knows links between hrt and thyroid. I did really like the recent video from a Dr in Bristol that was posted on here.
Have got a private blood test medichecks to do. Thinking I could do in 2 weeks time to give more info.
I am so grateful for all the information and help you provide.
Be well armed with guidelines printed out and be ready to quote them and that Ft4 (levothyroxine) is only 25% through range
Request 25mcg increase to 50mcg as a “trial” increase
If still refused after this consultation (unlikely) send a polite letter in showing your results and include % through range
And include all official NHS or NICE guidelines on dose
If you still can’t get dose increase see thyroid specialist endocrinologist
But yes get FULL thyroid and vitamin testing including thyroid antibodies first
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
Endo will instruct GP to maintain TSH around or below 1
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Update* not sure if this the right way to update.Phone call from gp this am. Heard back from endo can increase by taking 25 mcg one day then 50mcg the next. Blood test in 8 weeks. So some progress 😃
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