So I have an appointment with an endocrinologist the week after next so I want to make sure I am prepared and make the most of the appointment I have been waiting for.
I have been around this forum on an off for a while, some might remember me. I had Grave's as a child and RAI when I was 17, then diagnosed with chronic fatiguebat 19 and a really difficult 20s. After my first pregnancy I stay on higher levo dose and felt amazing, I realised the chronic fatigue was actually an under treated thyroid, things started t change after about 18 months my thryoid hormones were dropping again. Since my second pregnancy (12 months ago) I have really struggled to find that sweet spot again despite increasing levo.
The appointment I have is with the endo I saw in pregnancy who said he was open to t3 if i came back to him when I wasn't pregnant, so here we are!
I had my vitamin levels checked by GP recently and they are looking a bit low.... actually worse then when they were last done 6 weeks postpartum (but I have been breastfeeding for a year now)
I was taking supplements but a bit sporadically. I am now taking D3 +K2 spray, b12 spray, a bio-heme (iron + lactoferrin) and I have ordered a b-complex.
B12 (145-910) 333 24%
Serum Folate (3.0-20.00) 9.4 25%
Vit D (50.0 - 250)60.3 6%
Serum Ferrtin (5-85) 16 13.75%
My thyroids results are attached in an image.
I am feeling better than I was throughout pregnancy and for the first few months post partum and I have phases where I feel fine but it does seem to flucuate and then I will go through days/weeks of having lots of hypo symptoms and other times not.
I guess my next step is to get my vitamins looking better, what do I do about my consultant app, is it worth asking for a trial of T3 (which I am a bit nervous about anyway)
Thank you for taking the time to read this far!
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Lilacsocks
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Yes, ask anyway. You never know your luck. Your nutrients are dire, but that might not be the cause of your poor conversion, anyway.
However, your nutrients do need to be optimal for your body to use thyroid hormone correctly, so you do need to supplement.
If you are taking vit D, you also need to take magnesium, as the two work together.
And, I would have thought that you should have an iron panel done before supplementing iron, as your ferritin is so very low. Supplementing iron is complicated, and perhaps not best done by oneself when the ferritin is so low.
This forum. Especially SeasideSusie . Doctors know absolutely zilch about nutrients and nutrition. And, due to my varies experiences, I wouldn't trust a nutritionist as far as I could throw one.
Well in just writing this out you have realised that your vitamins and minerals need immediate attention as no thyroid hormone replacement works well until your core strength is strong and solid.
Must papers suggest a ferritin of at least over 70 for optimal thyroid hormone conversion and I find I feel at my best when my ferritin is around 100 : folate at round 20: serum B12 at around 500++ and vitamin D at around 100.
Do you have current TSH. T3 and T4 results ?
I would keep the appointment with the endo as a cancellation may mean you are " seen " as a case closed and then you will start all over again with someone new another time.
I don't know how long after pregnancy it takes for you to be seen as " back to your normal " .
Reading your journey I see that the debilitating symptoms you were dealing with post RAI were mostly due to years of under medication with T4 - Levothyroxine.
If your future monitoring in based on your T3 and T4 blood test results, with the option of adding in T3 - Liothyronine as appropriate, you should fair better.
However if back in primary care you will likely be monitored on a TSH which we know is totally inadequate and especially so in Graves patients post " RAI treatment " as Graves antibodies can " sit on " the TSH and distort this singular reading.
I was badly let down in primary care and it does seem to be where a big stumbling block lay whether it be with doctors inadequately trained in thyroid health or unable to order the appropriate blood tests and/ or restricted to prescribe T4 only - thyroid hormone replacement.
Good Luck, you have the offer of a life line, so use it, and keep us in the loop :
P.S. sorry - I've just blown up your results as I didn't notice them before I replied above and all the more reason to stay under endocrinology :
Helpful. Thanks. With regards to the ferritin do you mean 70% through the range or as the measurement? 100 would be over range based on the range I have been given.
It's never too late, so now go and buy some goats cheese and sit down :
Thanks for the amusing image, you've given me my first smile of the day :
Exercise uses up energy faster which will therefore deplete your store of T3 faster :
Until you are well, it's best to be thinking of more gentle less strenuous ways of keeping your body mobile ad flexed.
You are currently dealing with Graves Disease - your body is in a heightened state, please rethink your routines, as Graves can become a bit obsessive/compulsive for some people.
Yoga is said to be a good idea and does seem to help many people as it is brain/mind/ /body form of relaxation,
You will also be needing to be look at good nutrient levels as Graves can ravage the body of it's vitamins and minerals.
Your immune system has been triggered and is attacking your thyroid which has primed you to run too fast and your metabolism gone a bit haywire :
The AT drug should help with the symptoms but try and find things that you enjoy doing, other than sit ups, and be kind to yourself, be selfish and look after your needs for a change, and try and relax,
What about a painting by numbers - it can be equally as addictive / satisfying ???
Glad i can make someone smile and believe me it is not a good look! thanks so much for the advise, I really do appreciate it. Yoga it is then! Funny you mentio painting by numbers, my twin sister is addicted to doing them, perhaps i ought to give them a go too.Perhaps i also need to get my cut and mind checked as since i have been on carbimazole i have had a head cold and now a cough and cold.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Why is the ferritin range 5-85 if 30 is deficient!
The GP hasn't suggested an iron panel just that everything is normal.
I was told to supplement iron in pregnancy and I have half a bottle left so I have started taking them again.
Was there a question about the accuracy of the medichecks iron panel? I thought I read a thread about that a while ago so I didn't bother ordering one.
I was vegan but I have been introducinf animal products over the last couple of years, I'm still finding read meat a bit of a hurdle though.
My ferritin was down at 22 and being " of an age " was referred for an endoscopy and colonoscopy - all clear - and I requested an iron supplement and prescribed Ferrous Fumarate 322.mcg x 3 a day :
I couldn't tolerate this and no alternative was offered so I started supplementing myself:
An Iron bisglycinate compound was " kinder " on my stomach, I also took liquid iron and ate liver twice a week, and once I got my level over around 45 I felt stronger in myself, and just kept building.
I was also having to supplement B12 , folate and vitamin D and it does take time but so worthwhile and now I just take a maintenance dose of all four and learnt all this through this amazing forum.
If you have low stomach acid this can compound the issue as you are less well placed to absorb your essential key nutrients through your food, as this is another " usual " problem when hypothyroid.
For ferritin I now " just " have 1 tub of Asda frozen chickens livers weekly.
Defrosted and whizzed down into a pate kept in the fridge in an old jam jar I take a spoonful a day and a dollop of Hellman's mayo helps this medicine go down and keep my ferritin level up at around 100.
Sorry - I replied to this earlier up the screen yesterday :
The ferritin level I have used for the past 3 years is that of Medichecks as I have to pay for all my blood tests et : and that range is 13 - 150 :
My ferritin of 22 was found by the the NHS back in 2016 - I asked about the range used and told it was " a very wide one - 30 - 400 " :
I asked where then should my level be sitting as someone suffering from primary hypothyroidism and my doctor wrote back saying :-
" the logical answer is anywhere within the normal range - the pragmatic answer maybe at a level you can maintain through diet " :
along with a rider telling me " to be assured my Haemoglobin had been annually checked since 2014 and remained stable " :
This was when I started to draw back from relying on my doctor and started researching low ferritin and hypothyroidism, and found numerous research papers mostly from the USA linking these 2 conditions together and the ineffectiveness of Levothyroxine when ferritin levels were not maintained at a " over 70 " no range given :
Ranges are just guidelines of when a doctor can prescribe through the NHS system.
Ranges vary from laboratory to laboratory which doesn't help matters for the patient - and looking a this NHS range above from my initial full bloods it's a joke really, isn't it ?
Just to say good luck with the Endo. Most are diabetes specialists so it may be worth checking if this is the case and you dont get your expectations up too high.
You can ask to trial T3, get them and put them in a drawer, get your vits etc right and then if you still feel "not quite right", give them a go. When I first got mine, I looked at them like an unexploded bomb for a couple of weeks, and then gave them a go. It was like taking off an old heavy wet coat and stepping into the light!
I hope the consultation goes well and you and your babies go from strength to strength.
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