I’ve been on the forum for a few months after being diagnosed with Graves Disease on September after my health deteriorating significantly after giving birth to my first child in February.
I was bounced around the NHS system for months as they couldn’t work out what was going on with me until I reached 55kg, and my next door neighbour who’s fortunately my GP nurse stepped in and added Thyroid Function tests to my blood panel that they’d requested.
I’m currently under an endocrinologist at Royal Stoke but he’s already handed me off to a registrar after “significant improvement” who in turn decided that with my weight gain I was over medicated on Carbimazole , although feeling much better in myself.
My recent bloods show as per attached with ranges. (I know I’m lucky to get them to test T4 & T3 but that’s with a lot of persuasion after being so “out of range”)
I’m booked for a telephone consultation with both the registrar on Wednesday and the GP on Thursday.
Does anyone have any recommendations on how to advocate for myself that feeling better in myself, a lot less anxiety even without my propranolol yet I’m always tired and now require 10 hours of sleep to be able to keep up with my 15 month old and work full time.
Thank you in advance
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ELFK92
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I don't know anything about graves unfortunately, but you could probably do with a slight increase to both your T4 & T3 levels.
That might help with your issues around tiredness.
If it was me, I would emphasise you are still struggling with tiredness and needing much sleep. If you tell them you are feeling much better with other aspects they will probably take that as you are on the correct medication and over look your tiredness issues.
Have you, or do you do any work with your diet and supplementation of all the key vitamins and micro nutrients? that may help if you don't.
hi @Joey82 I supplement with a multivitamin daily however had previously been on 400mg of Ferritin via prescription from the GP as my levels dropped out of range but my tiredness has been since being taken off them so it might be worth me getting my Ferritin levels checked as I wasn’t struggling with any tiredness prior to being started on Carbimazole as unfortunately my body appeared to cope best of about 3 hours of sleep prior to being diagnosed
I know ferritin & iron in women is more critical than in men due to the menstral cycle etc so it is worth getting them checked again alongside all of the other key vitamin levels.
I don't think a multi fit will help as the dosage in them is incredibly low.
Be glad your baby is bouncing and in around 25 years time you may have time to bounce around !
Can you please look through your records and find which antibodies were found positive and over range and the medical evidence and reson for prescribing an Anti Thyroid drug.
Can you also share with forum members your first blood test at diagnosis TSH, T3 and T4 and what dose of Carbimazole was prescribed and what dose of this AT drug are you know taking ?
Postpartum thyroiditis is not uncommon and for many, given time, the body resolves itself.
Antibodies will be written something like TPO - thyroid peroxidase TgAB - thyroglobulin antibody - TR ab - thyroid receptor blocking - TSI - thyroid simulating antibodies :
If you find you can't tolerate Carbimazole - there is an option - Propylthiouracil - PTU for short.
When metabolism is not running at your ' normal ' - much like car engine not sounding as usual - your body will struggle to extract key nutrients through food no matter how well and clean you eat - and this alone can compound your health issues further.
Do you have any readings for core strength vitamins and minerals - ferritin, folate, B12 and vitamin D.
The above results are all in range but may not be where you need them to be for you -
Did you ever have a TSH, Free T3 and Free T4 run prior to giving birth and have an idea where your T3 and T4 were, and where you felt well ?
unfortunately I don’t have the results from the hospital with the TRab if I remember right as the test that was completed but I did find these from September.
Unfortunately I didn’t get a Thyroid Function Test done before I was pregnant so I don’t actually know what my optimum levels are. However I do know that there was concerns about my thyroid during the last trimester of pregnancy and I got them to agree that the reason my baby had stopped growing during the last 6 weeks was down to my thyroid not being tested and controlled. Fortunately he was 7lb 2oz but was projected to be 10lb 5oz and when measured via ultrasound weekly during my last 6 weeks showed no growth
Where are your levels of ferritin now as this at least needs monitoring -
The rest of these detailed results go way over my head - sorry.
Are you registered for online access to your medical records at the surgery - just ask at reception it is your legal right - maybe there is something in your record detailing which antibodies were over range and positive - alternatively ask the hospital for a copy for your own medical records.
September was 7/8 months ago - first step is to organise a full thyroid panel to include TSH, Free T3, Free T4 antibodies, inflammation, and ferritin, folate, B12 and vitamin D :
If your doctor is unable to help you I'm afraid you'll need to pay for this yourself - Thyroid UK - www,thyroiduk.org - have a page of private companies who can action this for you and when you have the results back start a new question and we can explain what it all means and then you have a focus and advocate better for yourself with your doctor.
P.S. Stop the multi vitamins they are not recommended as we supplement what we need and not guess on a broad spectrum product containing not enough of anything - and any other supplements for around a week prior to the venous blood draw so we can see exactly what your body is holding onto.
Both Medichecks and Blue Horizon between them, I think, cover the country and you can arrange a nurse home visit, at an extra cost, if that suits you better.
thank you SlowDragon yes I always get my bloods completed at around 8am in the morning to ensure results are consistent.
I’m hoping that I can convince the GP to complete a full vitamin panel and Ferritin levels so as I can be medicated correctly as I’m feeling much better when taking ferritin phosphate as opposed to now when I’m taking nothing as my levels rose and they believed I didn’t need it anymore.
I’ll get some private testing done once I know what they’re prepared to test again this time round.
Very common for NHS to stop iron supplements too soon
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
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.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
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