Brief history,diagnosed graves 2018,thyroidectomy June 2022.Fine on levo only until Jan 2023(100mcg 5 days,50mcg 2 days)Had a blood test at GP for unrelated illness and was referred back to endo as TSH was >10.
Endo has gradually increased levo and I am now on 100mcg levo mon-thurs and 125mcg Fri-sun.
I know I am a poor converter to T3,but I am trying to optimise everything else first.
Last medichecks,taken as per advice on here.
CRP HS 1.88<3
FERRITIN 81.9 (30-150)
FOLATE SERUM 22.2 >7
ACTIVE B12 >150 (37.5-188)
VITAMIN D 67.6 (50-250)
TSH 0.826 (0.27-4.2)
FT3 4.2 (3.1-6.8)
FT4 24.7(12-22)
THYROGLOBULIN ANTIBODIES. 14.9 (0-115)
THYROIDPEROXIDASE ANTIBODIES. <9 (0-34)
I have started vitamin D3 +K2 supplements again.I also take magnesium glycinate +B6,high dose vitamin C,selenium and zinc.
I have also tried to increase my calorie intake and gone onto full fat milk.I am starting an omega 3,6,9.
I am having a lot of muscle and joint stiffness,neck and shoulders,knees,feet,hips and lower back.Could this be because my FT4 is over range.I was thinking to increase the levo to 125mcg on sat/sunday only and drop the extra 25mcg on friday.Would that be too much? I would still like to be no lower than about 20.
Any advice appreciated.Sorry it's long winded.
Charlie-Farley
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Cavapoochonowner
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Hi Cavapoochonowner, when my FT4 was over range I also had increased muscle aches, so this may well be at play for you too. I’ve personally found that I can tolerate FT3 near the tops of the range, but not FT4 (although I know other members report the reverse!)
I’ve also found supplementing with turmeric (with ginger & black pepper) has improved general aches and improved my circulation, so this may be worth a try.
Thanks for your reply.That's what I was thinking.When I first had graves ,before I was medicated I did ache all over. I really didn't know what to do with myself,it ached to turn over in bed and I feel a bit like that now. I also feel a bit edgy and twitchy.I thought,see how I feel with my FT4 a little lower and get my vitamin D a bit higher before potentially trying T3.I have read that omega 3,6 and 9 can help with inflammation so I have sent for some today.I have also heard about turmeric,so I will look into that aswell.My gums feel sore at the moment ,although I am meticulous about cleaning(water floss.floss.then brush) so that also makes me want to reduce inflammation.Thanks again for the reply.
Glad Buddy195 jumped in - my internet has been down 😱😱 I think the advice from buddy is good and I think you have a really good handle on things. I would say yes you may be gluten intolerant or coeliac? A family member was only diagnosed in her late 40’s so it is possible to be missed for decades. If you decide to go down the coeliac test route, make sure you keep eating gluten until you get the test. I went gluten-free. I didn’t do the coeliac test. I wanted to get on with it quickly and I felt my surgery were seeing me as a hypochondriac at that point as when I approached them about me possibly having hypothyroidism they decided I had depression and anxiety disorder.
Felt the benefits within two weeks, and honestly nothing tastes as good as gluten-free feels it helped everything. It is in my bio.
Hello Charlie, Yes I've had some good advice come through from different people.I think sometimes you just want someone else to look and see if you're missing anything.I've decided to drop my levo dose by 25mcg over the week.Enough hopefully to keep me at top part of range but not over.
I'm going to start the omega supplements and look into turmeric as well.
The only thing that puts me off gluten free is that I am a picky eater and tend to eat the same foods every day.I have had ready break for breakfast for more than 30 years(I know).
I am trying to make sure I eat enough calories as I read that limiting carbs can affect conversion to T3.I don't have a big appetite so I'm trying to snack as well.I've gone onto full fat milk.
I think I 'll give it 3 months and test again and if no change I will look at gluten free(my daughter is).I don't think I could do the prep for the camera for celiac.
I'm also considering trialing T3 but I want to try to optimise everything else first.
Bless you I know what you mean about changes. Even though I am a bit of a dustbin (eat many things) I found my fav muesli combo very hard to give up. I just found it helped immensely with relieving constipation. Also upped my fluid intake. Even gluten free cereals cause me ‘problems’. Grateful I can eat GF toast and bacon and eggs as a treat once a week (sometimes two) 😉
I have no problem with constipation,I think it's having the above range FT4 and the magnesium tablets.I only have constipation if I take cocodamol for migraine, which I did a couple of months ago.It has led to me having a prolapse which isn't fun.I definitely can't afford to get constipation any more so I'll remember about the hydration,and the gluten free if necessary. Best wishes to you.
Oh Cava - I’m sending virtual hugs - yes hydration is something I have to consciously do - I pop a few grains of Himalayan salt in with a bit of lemon. Also phsyllum husk is very good- they use it in gluten free bread and other products too. Take care of yourself. That reminds me! I’m off to drink a glass of water! 😂👍
Given your T4 is so high on T4 only medication (and your T3 is not optimal despite being in range), there is a good chance you don't feel good because the T4 is converting to reverse T3. Very few UK labs test reverse T3 and those who do tend to send the labs to the US for results so it a) is expensive and b) takes a while to get back, but definitely worth looking into. They don't tend to test iodine levels in the UK either but that is another very useful marker as to why there may be a conversion problem. Finally, to see whether you are genetically prone to being a poor converter, you can do DNA testing. If you are definitely a poor converter, you may need to add in T3 (ie combined T3/T4) in order to actually feel good - that's the combination that has made me fee like a human again.
You should also definitely supplement your D levels. Try to get it closer to 100.
Thankyou for your reply.I did think reverse T3 might be happening because at one point this year my FT4 was in the 30's(levo dose too high) and I think it can happen as a sort if safety cut out.I have started taking vitamin D again as it was 100 before the summer,so I stopped supplementing thinking I'd be OK over the summer.I probably should take it all year.I am considering a consultation with Roseway labs for a T3 trial once I have tried everything else.Thanks again.
When I had joints getting stiff I got myself tested for food intolerances as I knew my daughter had found it helpful and found she was lactose intolerant. My test showed my main problems are oats and wheat. After about 2 months on my new diet I found that my joints were much improved. As an extra benefit my long term indigestion had cleared up.
Many thyroid sufferers find that going gluten free is helpful.
Hello Anthea,I have wondered about that.My daughter is gluten intolerant,she hasn't done the celiac test as she would have to eat gluten for a while and can't face doing it.She found alot of intolerances by doing the York test a few years ago.I will have to look into it myself.Recently I cannot tolerate eggs anymore,ibuprofen or alot of very creamy things.One of my sons has ulcerative colitis and the other has IBS.Both have things they cannot eat.Thankyou for that idea.
I was tested more than 20 years ago using the Vega test which showed that I wasn't sensitive to gluten but oats and wheat were top of my list in degree of sensitivity. I'd been eating porridge for breakfast that winter, so no surprise there. Further down the list were things like alcohol which I guessed anyway. Also chocolate which I can take in small amounts occasionally, but recently after a bad cold I was making hot chocolate at bedtime each day; then I remembered that chocolate was on my list of sensitivities and I changed to having hot milk each night and felt much better.
Since wheat and oats are the main foods with gluten in it doesn't make much difference to me. However I do avoid food containing 'gluten free oats' as it's the oats, not the gluten which I'm avoiding. I've since found that I'm sensitive to potato which is a nuisance as potato starch is in so many things (stock powder was unexpected). I have finally found a brand of g.f. bread which doesn't contain potato starch. As you can imagine I read a lot of food labels.
I don't use Ibuprofen any more as it just seems to disagree with me, but I don't know why.
and another thought - have you tried different brands of levo? one I tried recently made my fingers start to seize up - an old symptom of wheat/oats intolerance for me. The same started to happen when I tried Armour NDT. So worth trying different brands of levo and then sticking to the best one for you.
My Ft4 is currently right at the top of the range, ft3 in bottom 20%, and I feel dreadful. Tsh below range. I feel like a sloth. Slow moving, limbs like lead after doing very little. I also have that internal tremor and mind zipping back and forth all the time. My focus is crap! Don't have the muscle aches. But I definitely put it down to too much levo. I've just made an appointment to see a private endo who, hopefully, will lower my levo and give me some t3.
Hello Forest Garden, I too have the internal shaking and repetitive thoughts(songs going round in my head).Probably I should reduce my levo slightly(I was thinking by 25mcg per week) and see if that helps.I am then considering having a consultation with Roseway labs with a view to trialing T3.I want to do one thing at a time so I know what's working and what's not.Thanks for your reply.
Hello,The medichecks ones were done 24 hours after a 125mcg dose.I had NHS endo ones done the next day after a 100mcg dose.These results wereFt4 19(10-18.7)
TSH 0.87(0.38-5.5)
They were both done around 8.30am and fasting.24 hours after last dose of levo.
Hello ,Thankyou for your reply.I started vitamin D3 and K2 again as soon as I got my results.I am taking 4000iu.I had got my vitamin D up to 100 and thought it being summer I would maintain it,but obviously not.
I am not taking any vitamin B complex at the moment.Is there a good one you recommend?
I have also just started omega 3,6,9 to try and help with inflammation, just 1 tablet a day to start(it recommends 1-4 tablets a day on packet).
Regarding the levo dose ,I would like to get the Ft4 levels down a bit,but as you say my Ft3 could also go down.What to do?
I think I will reduce to 125mcg levo on 2 days a week instead of 3 but split it like you said so it is more evenly spread.So 112.5mcg on 4 days and 100mcg on 3. I do know that my body doesn't like change(I suffer migraine) so everything might work more effectively.
I'll give it 2-3 months,because my endo made me wait 3 months and my Ft4 came down from 27 to 24 with no dose change at all.
Thanks again,I'll report back if necessary after 3 months.I know I will probably need T3 in the end but I'm trying everything else first.
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