had weird hip pain at first on levo, but started to feel a lot better about 5 weeks in, some symptoms subsided/eased. Constipation totally resolved!
NHS test 18 July:
t4 11.4 (7-17).
tsh 1.71 (0.20-4.50)
TPO 4 Kiu/L (0-9)
Then, in August I started to feel unwell again (symptoms creeping back in/up, joint pains and cramps feeling hot/cold, dizzy, mouth ulcers, stiff jaw) did a medichecks finger prick test to see what was going on:
Medichecks 22 Aug 2023:
t4 14.3 (12-22)
t3 3.5 (3.1-6.8)
tsh 2.830 (0.27-4.2)
tgab 262 (0-115)
tpo 12.5 (0-34)
I sent results to practice and triage nurse booked for an NHS test 4 Sept 2023 to check results:
t4 9.8(7-17)
tsh 1.96 (0.20-4.50)
Gp agreed a trial of. small increase. I increased to 75mcg (Wockhardt and Teva) and felt great after a bit of a rocky start, then after another couple of weeks started to feel not so good (on and off) - fatigued and achy again with pains in back and thighs same as i had before starting the levo and thought I probably might need another increase based on how I’ve been feeling…Then…
NHS blood test 21 Nov 2023 (0830-ish, fasting, levo not taken until after test )
t4 13.8 (7-17)
tsh 0.10 (0.20 - 4.50)
as photo above
previously b12 was ok
folate ok
vit d around 70 (using the better you spray as advised here)
ferritin low at 30, trying to improve through diet as advice on here. And since starting levo, periods have been very, very light whereas they were really heavy before levo.
everything else good - bone profile, kidneys, liver function, full blood count.
It’s weird…bloods look good…No T3 as they don’t test it.
I can’t say I feel absolutely awful like I did on the 50mcg, but I thought I would feel better than I do with those numbers.
Bit worried. Any ideas what’s going on lovely people?
1) Am I now overmedicated? I don’t feel it - I get the occasional small palpitation, but have always had them. No weight loss whatsoever…in fact it has actually gone up slightly. The results have been marked as no action required.
2) Do I need to give it a bit longer? Shall I stay on the 75mcg?
I wondered if these results are a reflection of where I was/how I felt at week 5 of the levo 75mcg when I felt well and there is a lag between symptoms and blood results.
It has made me wonder if all the symptoms are actually all related to a worsening of my diagnosis CFS/ME after all
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JoJoloveschocolate
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I’m sorry you don’t appear to have had any replies to your post so I’ll give you my opinion, for what it’s worth 😁. Your FT4 is 68% through the range and I think a small increase in Levo wouldn’t go amiss, perhaps to 87.5 mcg per day (an increase of 12.5 mcg per day) and retest in 6/8 weeks. Your Medichecks FT3 result was very low so you seem to be a very poor converter. Medichecks have a special Black Friday discount at the moment, I haven’t checked yet if it includes the thyroid tests.
Have you spoken to your GP about your ferritin deficiency (30 or below as quoted in the NICE guidelines). Ask to have a full iron panel to check for iron deficiency. Low ferritin can cause fatigue. Don’t be fobbed off by your so called diagnosis of CFS/ME.
PS Monitor My Health has a 25% discount at the moment if all you want is TSH, FT4 and FT3.
Thank you for your advice. I have bought a medichecks kit and will recheck all bloods in a few weeks including t3 and vits. I know the gp won’t allow an increase yet based on that tsh as they were reluctant to increase to 75 with a tsh of 1.9. They haven’t mentioned ferritin, I think the low end of the range at the lab was 10. They do tend to fob me off because I’ve got the Cfs label. Thanks again.
I'm with Gingernut, you really need to get your iron sorted, add another squirt of Vit D (aiming for 100) and tweak your levo up a little.... how have you found Teva? This could be a reason for the bumpy increase as it has some excipients that many don't tolerate well
CF and ME are often just a label given when it's actually because you are still Hypo
Thank you, Eeyore. I know they won’t let me tweak it upwards yet and I’m reluctant to ask in case they take a harder look at the low tsh and think again about it and decide to drop the dose back to 50. I’ve got the vit d and k spray. I think its 3000 vit d…should I use that every day do you think? I feel ok with Teva.
Hmm... perhaps concentrate on getting your ferritin and Vit D up to get the best use of the dose, whatever you are doing with the Vit D spray at the moment just up it a bit or more often, hopefully the lighter periods will mean getting your ferritin up will be easier... are you eating chicken liver or supplementing with Three Arrows or Iron Bisglycinate?
With a bit of early prescription requesting (holidays quit useful excuse) you ought to find you'll have enough in reserve to perhaps add an extra 50-100mcg spread over the week without having to negotiate a rise 😉
I’ll use the d spray every day. I’m eating chicken liver pate twice a week, small amount of very dark chocolate every day, fortified cereal every morning, red meat twice a week, dried apricots and rasins as snacks, green leafy veg. I’ve just been looking online at the three arrows after reading another post on here about it. I might see how far I get with diet first and then see what the medichecks test shows. If no improvement I’ll have to look at getting the three arrows supplement.
That’s a great idea to add a little extra spread over the week. Hmmm… Although it does worry me if the tsh drops even more with a sneaky increase…a “snincrease” 😆…then next time the gp will decrease my levo for sure.
I have to say I don’t feel quite as achy today and I’ve just started a period so maybe that’s why I was feeling a bit more achy and tired. I’ll give it another week and see if things settle again. I don’t feel anywhere as bad as I did on the 50mcg. But maybe the t4 will start to drop again in a few weeks and the tsh go up again like it did last time. I’ll do the medichecks tests in a few weeks and see how everything is going. Thanks for your advice. And Gingernut too x
It is a horrid climb up to optimal with many peaks and troughs but you are moving in the right direction, do you use any apple cider vinegar or betaine HCL to up your stomach acid, this helps to better utilise food and absorb more.
They can't lower your dose unless you agree to it, so just remember a polite no works wonders 😊 you can always back it up with showing your in range fT3/4 results
I’ve thought about apple cider vinegar before so I’ll get some, thanks. Could they refuse to prescribe the levo if I refused to lower the dose (if it came to that)?
No, I don't think they can (mine didn't, just wrote a snotty note in my records and referred me back to Endo)... if it comes to a toe to toe you can ask to be referred to an Endo... you have the proof that you are not over range where it counts
If it look like it will be an issue after your next test then put up a new post and you will get loads of advice on how to deal with them 😁
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