The above quote is from my endo to GP. Everyone was so helpful when I posted a few weeks ago re: my endo stopping my levothyroxine & ferrous sulphate for 8 weeks. It is now five and a half weeks and I am feeling pretty grim. Thanks to this forum, I have had new blood test results from MediCheck:
TSH 10.13 (0.27-4.20) previously 4.94 and 3.48
Free thyroxine 14.34 (12-22)
Total thyroxine (T4) 103.1(59-154)
Free T3 3.73 (3.10-6.80)
Thyroglobulin antibody 2874,000 (0.00-115.00)
Thyroid peroxidase antibodies 180 (0.00-34)
Folate 4.6 (2.91-50)
Vit D 27.22 (50-200)
Ferritin 56.68 (13-150)
B12 - fine, I am self injecting
My NHS blood test is due in 12 days time and next endo appointment is on 28 June. My instincts are telling me not to wait that long and start taking levothyroxine again now, starting on 50mcg per day (this is the amount I was on before.
I would be very grateful for your advice
Many thanks
Written by
HKAnne
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HKAnne - I hadn't heard of 'compensated euthyroidism' so looked it up. It's another way of saying subclinical hypothyroidism. They do like to complicate things!!
With a TSH of 10.13 and such low free Ts after 5 and a half weeks off Levo, it's pretty obvious that you have primary, not subclinical, hypothyroidism and Hashimoto's to boot!
You obviously need to be back on Levo, but if your endo won't accept your Medichecks results you need an NHS test to show similar results to these. I know you feel dreadful, but can you possibly wait the extra 12 days to your NHS blood test just so you can avoid the endo rejecting your Medichecks results. You could start your Levo immediately after that test and can tell the endo why on 28th June.
Folate and Vit D need increasing, are you supplementing? And you obviously need to be back on your iron supplement, why was that stopped?
As you have Hashimoto's, are you gluten free and supplementing with selenium?
Many thanks, good advice, not sure why he stopped the iron supplement , he tried to stop my b12 but I refused as I have nejurological symptoms. I am not on gluten free diet yet and thanks for suggestion of selium
Since your ferritin level dropped to 9 you will obviously need to get your ferritin level to optimal and then take a lower dose of iron (a prophylactic dose, to use the term doctors use for a maintenance dose) to maintain it. Otherwise you'll just get into a permanent cycle of dosing to raise your ferritin, then letting it drop, then dosing to raise your level, then letting it drop...
I suggest you take over the dosing your iron yourself as well as the B12. I've just written a post to someone else on the subject of sourcing prescribed iron supplements, which you should read :
You can sort out your iron level yourself by buying any necessary supplements yourself. You can get them online or simply by saying to a pharmacist where you don't get any other medication that you have been advised to get some by your doctor as it is cheaper than on prescription. You will obviously need to monitor your levels yourself as due to your iron being above 50, even though that is less than halfway in the range, it is very unlikely either your endo or GP will prescribe it for you again. Some doctors use a ferritin level of 30 for being ok while others use 50 depending on the research papers they have read.
You need to sort out your vitamin D3. The NHS won't do it properly for you as you are over 25 so are "merely" insufficient.
In regards to starting your levo again - if you do and get your TSH below 6 then you won't be prescribed it again. If you want to take levo I would wait until after the NHS blood test though the endo could try and do another blood test at the appointment. If you think your GP will prescribe levo for you without the endo's input then do the NHS bloods, get the results and see the GP.
Many thanks for your good advice. Will hang on for 12 more days. GP said someone of my age (57) only needs ferritin levels of 50! Once I have next blood test will increase iron supplement and start on vit D
GPs rarely do anything for hair loss and if you want to help keep your hair get your ferritin up to halfway in range plus sort out your other vitamins.
If you are going to keep your June 28 appointment it may be worth hanging on until your NHS blood test before you resume taking 50mcg.
I wouldn't want to see that endo again. Perhaps you could ask your GP to refer you to someone else if you still think an endocrinologist might be helpful. If your GP doses you properly your symptoms will improve and you might not need to see an endo.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
Thyroid peroxidase antibodies have increased since your thyroid levels have dropped and TSH has risen. The thyroglobulin antibodies are off the scale! There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
VitD is insufficient. I would supplement 10,000iu D3 daily x 6 weeks and then reduce to 5,000iu daily and retest in 3-4 months. Your GP might agree to prescribe D3 but if you are palmed off with 800iu refer GP to NICE CKS guidelines cks.nice.org.uk/vitamin-d-d... VitD should be taken 4 hours away from Levothyroxine.
Ferritin is optimal halfway through range. You can supplement iron to raise ferritin. Take 1,000mg vitamin C with each tablet to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.
Folate is a little low. As you are SI B12 I would supplement 400mcg folic acid and take a B Complex vitamin too. Skip the B Complex vitamin a couple of days prior to all blood tests as the biotin can skew results.
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