I can't tell you what a lifeline this forum has been for me. I have followed all of the advice previously given and am no longer on my knees, for that I will be eternally grateful.
Just to recap.... September 2016 I was desperate. Brain fog, tripping on words, pain in arms and legs in bed was a nightmare and my anxiety levels were sky high. Doc increased Levo from 75mcg to 125mcg and said he'd refer me to Endo (think that was just to shut me up as he wouldn't discuss my low B12, Ferritin, etc... as he considered them all normal despite my symptom evidence).
So started 125mcg of Levo and became gluten free too, still taking Levo an hour before breakfast.
Week later I started taking B12 supps (Solgar 5000 with Thorn Basic B complex). Take these straight after breakfast and moved Levo to bedtime, 3hrs after last food and drink.
Week later introduced 1 x Ferrous Fummerate + 1000 Vit C immediately after lunch (did this for 4 weeks then stopped)
About 2-3 weeks after starting all this I hit a wall and felt the worst I'd been all year, but having read that many of you have had the same experience I , I carried on. I can honestly say that after that everything went uphill, the fog lifted, I feel slimmer (may not look it!) but I feel it, I occasionally lose a lb in weight (which I'm sure is because of relooking at my diet and removing the rubbish). My bedtime pain has gone (this was massive to me, I feared bedtime!!!). My anxiety (I've always been a worrier) eased, although this has now returned following my mother's diagnosis of Alzeimers (think positive, think positive!) That Autoimmune series has been an eye-opener, thank you to the person on here that bought that series to our attention...the whole world should see it.
Anyway, I digress....
Last week I had a fresh batch of bloods done, Intrinsic Factor (yes I stopped my B12 a week beforehand), Folate, Ferritin, B12, TSH, FreeT4 and CRP.
My bloodtest was at 8.30am on the Tuesday, so the last Levo I took was on Sunday night (not sure if this 'skewed' my TSH level which was written in a BOLD print with a * beside it)
Results... Nov 2016
TSH 0.12 (0.35-5.5)
Free T4 17.2 (10-19.8)
CRP <4 (0-5)
Serum B12 830 (211-911)
Ferritin 124 (10-291)
Folate still awaiting result
Intrinsic Factor still awaiting result (not sure why there's a delay with these!?)
Apart from my Alzeimers anxiety I feel 'great', (touching wood, fingers crossed, lucky black cat, etc, etc...). I wonder if my TSH (being written in bold with a *) is going to be considered too low and would my Levo timing before my bloodtest have skewed that result?
As always, thank you for any advice. This site is saving lives!!! X
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janey1234
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Just one more thing...should I remain on 5000 Solgar B12 and Thorn Basic B complex until I get my folate and IF results? I've been on theme for 8 weeks now. Thank you ☺
Unfortunately, most conventional doctors tend to freak out at the sight of a suppressed TSH, and automatically conclude you are overmedicated.
Your TSH and FT4 levels actually look fine to me, but T3 is the most important thyroid hormone as it's the active form. Have you had your FT3 levels tested? If they are low, that could explain remaining hypo symptoms despite a low TSH and FT4 levels in the upper normal range.
The idea is that T4 is converted to T3 in the body, but that conversion does not work in everyone. That is why many feel better when they add T3 to the mix.
Also, it would be a good idea to have your adrenal status checked, as weak adrenal glands may have a hard time handling the sudden onslaught of thyroid hormone.
Sorry if you have mentioned this before, but were you put on thyroxine by a doctor or did you order it yourself online and self-medicate? If so, how much did you start on? I take it you did not go from zero to 125 mcg of Levo overnight?
Have you had various deficiencies (iron, vit B) diagnosed?
I've been on this journey for almost a year now and this site has been an enormous help to me. These are just my latest results following a string of earlier blood test postings, so all the B's test, Vit D, iron, etc... I've been on 25mcg -75mcg-125mcg Levo over the year (precribed by doc)
Our doc doesn't test T3. I assume that because so much has eased, pain, fog, etc...and that I feel soooooooo much better, that I am actually properly medicated (?). Is there any reason why you think I should have my adrenals tested, my fatigue has gone, no more dropping off in the afternoon?
I was just thinking that if you still have symptoms of untreated hypothyroidism, adrenal fatigue could be the reason for that. But that does not seem to be the case. If it's not broken, don't fix it
I agree completely with Clutter's post about not letting your doctor lower your levo dose simply because s/he believes you are over medicated. Like Clutter says, some need a low TSH to feel truly well and rid themselves of all symptoms. Personally, I feel best when my TSH is really low as that keeps the antibody levels under control (I have autoimmune hypothyroidism). When my TSH is where my family doctor would like it (around 1.5-2), the antibodies always flare up.
Yes I have Hashimotos too Hidden so will heed the advice given re dosage. At the moment, for the first time in a long time I feel really well, so I will fight my corner if doc tries to reduce dosage. 😊
Sadly if gp wants to reduce medication there's nothing we can do.happened to me over a year ago, .they become pedantic and mutter it's at coroner's advice , then another go will say somebody went to the ombudsman!!!? So? Why would they be scared if they are doing their job and never made a mistake!
Well fingers crossed my doc doesn't reduce my dose especially if it means giving my endo appt to someone else and him never seeing me again 'moaning' about how unwell I feel 😆
TSH is flagged with an asterisk to alert your GP that TSH is below range. You aren't over medicated because FT4 is within range. Taking last dose on the Sunday night won't have skewed your TSH. Biochemically 125mcg is excellent. Some patients need low TSH to have good FT4 so resist any attempt your GP makes to reduce dose because of low TSH unless you feel over medicated. 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.
B12 is good. You may need to continue supplementing to maintain level.
Ferritin 124 is optimal half way through range. I would stop supplementing iron. Too much iron can be as bad as too little.
I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.
I only did the iron / vit C for 4 weeks so have already stopped. Will be interesting to see what doc says (that's if he asks to see me) about that result. I will wait for my other 2 tests (Intrinsic Factor and Folate) but I wonder if I do still need this Endo appt. If I do still feel this good by then (21December) I'm not sure that they will be able to help me any further.
Hi Clutter I just read that article you suggested and it says....
"Dr Toft 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."
As my TSH is 0.12 (0.35-5.5), I wonder if...
A) the doc will argue that I am below that 0.2 that Dr Toff states and my FT4 is good
B) Would a reduction to 100mcg still leave me with good bloodtest results and feeling this good (I know that only trying that would give me that answer)
I know what my doc is like, I need to prepare all arguments before arrival. If the Pulse article mentions those figures he may say his argument to reduce is valid (hope that makes sense!).
Unless you feel over medicated I would refuse a dose reduction. 100mcg might deliver good blood test results but that's not the same as feeling well which you have said you do on 125mcg. There's no guarantee that reducing dose will raise TSH anyway. My endo has been trying to raise my TSH to 0.5. Despite 2 dose reductions it didn't budge but I began feeling less well and refused a 3rd.
If you think the Pulse article will give him scope to insist on a dose reduction don't show it to him.
I think I'll keep that Pulse article to myself then. Just as long as being that low doesn't have any harmful effects in the future, regardless of how well I feel at the moment. X
The Rotterdam Study finds there is no association between TSH and atrial fibrillation and a meta-analysis of patients with TSH <0.1 found one extra hip fracture per 1,000-patient-years.
Thanks again @clutter, wouldn't it be lovely to get the facts, the answers, the reassurance and the means to help ourselves as quick at the doctors as we do on this site 😆
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