Hi fellow sufferers ! Finally after 2 years got a print out of blood results. Still none the wiser though - just says Thyroid Function test (SG) normal - no action. When asked for the actual readings she said she could'nt access them !!
Serum TSH level is 0.82 - range is 0.10-5.00mU/L
Serum free T4 level is 15 - range is 8.00 -19.00 pmol/L.
Arranged another blood test because I told her I feel so ill ! GP said I was probably low in VitD - told her I'm already on Calcium and Vit D tablets that were GP prescribed 2 years ago. Why don't they read your notes !!
I'm on 5mg carbamazole daily for hyperthyroidism, also coeliac and sjogrens syndrome - all diagnosed within the last 3 years and have had systemic lupus for 30 years.
Asked GP if I could come off carbamazole as I thought it was making me hypo she said no and suggested I could try thyroxine along with the carbamazole to improve things ! Any improvement from the dead slug feeling would be wonderful.
Any comments would be greatly appreciated - I'm getting ready to purchase some rope to hang myself ! It's such a battle with doctors to get any help, especially when I'm exhausted all the time !
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sally1976
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Why were you prescribed calcium ? and have you had a recent test to check the level ? It's rarely needed unless it's low in which case taking D3 will normally correct it. If your calcium level is high due to taking the supplement it's possibly making you feel ill, high calcium is never good.
I was put on calcium supplement with vitamin D following a bone density scan 3 years ago. I also have osteoarthritis, spondylitis, along with 12 prolapsed dics in my spine. Apart from my many other immune diseases I'm fit and healthy ! lol.
If your doctor advised calcium supplements after a DEXA scan then consult the doctor before making any changes. For information and advice you could consult the HealthUnlocked BoneHealth forum.
People with hyperthyroidism can lose bone density as a result of high thyroid hormone levels. Calcium and vit D are protective and preventative.
Believe me, you do not want to lose bone density and vit D alone may be insufficient. You could ask your doctor whether it would be suitable to take K2-MK7 alongside. Otherwise eat foods rich in K2.
I lost bone density due to high calcium levels and hyperparathyroidism, I also have severe vitd deficiency, believe me nobody wants high calcium level so important to keep a check on it.
I use lef.org to order all the blood tests I want. And much cheaper than the co-pay. Insurance/testing is a wracket where co pay actually is MORE than the actual cost of testing. There are many walk in get any blood test you want. Lef.org blood test orders are taken to the same labcor blood draw place as your Drs order, same tests, lower price, any tests you want.
I suggest you find another endocrynologist. Only my view that a GP is way out classed by these endocrine / systemic problems.
My studies and personal practice is that vitamin K plus D3 is more beneficial for bone loss and vitamin D uptake. After taking LEF brand vit K for years with some positive benefits seen this brand has much higher efficacy for me; Walkabout brand Australian Emu Oil.
I also take what most would view as high doses of iodine. My studies also reads of many hyper thyroid folks actually see their thyriod self regulate with taking more iodine. There is a face book group: Iodine crisis and also a good book on Amazon: Search for: Iodine Crisis. Farrow and Brownstein are must reads (both).
Our own health issues have only improved by taking the research and knowledge quest into our own hands. We use medical folks to do what we want, and if they are stuck in some dogma (like Tri-Est vs the preferred Bi-Est and many more issues) we find those who will do what we want. My wife has gone off the chain and just ordered what we want on the Internet shipped around the world 3 times avoiding stupid restrictions.
Why isn't an endocrinologist managing your hyperthyroidism? Your GP shouldn't be initiating Levothyroxine in addition to Carbimazole. Most hyperthyroid patients are weaned off Carbimazole 12-18 months after starting Carbimazole to see whether remission can be achieved.
I asked GP this morning if I could come off it as I feel so ill and perhaps it was making me underactive. Told her I'd read that sometimes carbimazole rights the thyroid after 1-2 years, she said no but it could be supplemented with thyroxine. She said I could stay on cabimazole for life - but it's not much of a life feeling the way I do. I feel I need to see GP/endocrynologist that treats me as a human being instead of being fobbed off all the time.
It's so soul destroying - even my brain hasn't got the energy to fight them anymore.
Your GP is confusing Block and Replace (B&R) treatment with Carbimazole titration. If an endocrinologist decides on B&R then this is done at the beginning of treatment and high dose Carbimazole (usually around 40mg) is prescribed to shut down thyroid production and Levothyroxine is prescribed to replace the thyroid hormone.
You are on a very low dose of Carbimazole. Most endos will reduce dose further with a view to weaning you off altogether to try for remission. Patients with Graves antibodies have less than 50% chance of permanent remission and can resume Carbimazole or B&R if remission fails.
Your GP should have referred you to endocrinology for management and should certainly ask for advice from an endocrinologist before adding Levothyroxine to Carbimazole.
I can definitely empathise with the frustration levels. It is a minefield and trying to work out your own treatment whilst being exhausted is a nightmare.
However I can attest to feeling a hundred times better now that I understand my conditions, tests, vitamin levels etc
It took me scouring over my blood tests to realise I may have a b12 deficiency and all my symptoms pointed towards it! Along with folate which is very important.
You don’t appear to have any vitamin results - so might be worth checking what they have tested as b12 is rarely checked but iron is.
Also since you have many autoimmune conditions-and very likely to have others- pernicious anaemia May be a possibility for u 😣 which causes a b12 deficiency, and is common in both coeliac and thyroid patients, but seeing as you are coeliac your b12 absorption will probably be rubbish anyway.
Multivitamins won’t help necessarily -as still absorbed in gut- trying a b12 oral spray may work better for u if you don’t have pernicious anaemia. (Please check to see if your symptoms sound familiar- fatigue is the biggest one! 😴 )
But I would get your doctors to check it first!
Remember to come off supplements (esp those containing biotin or B vitamins) a good few days before the tests to get accurate results.
Apart from that- adrenals are often affected massively with any thyroid disruption - I agree u appear to be in a euthyroid state and I wouldn’t recommend levothroxine or even coming off carbimozole at this stage until you’ve balanced other things.
High strength Vitamin C and magnesium for adrenals and general health is certainly worth trying- again made a massive difference to me.
And although you may have vit D tablets - the winter will deplete it considerably. Dosage may need to be changed- what are you on now?
Calcium levels should be monitored but taking vit k2 mk7 along with your vit D should help to direct calcium to bones rather than high levels in blood which can be dangerous. See signs of hypercalcaemia or parathyroid (nothing to do with thyroid but the gland behind that regulates calcium) should be checked too.
You should probably be under an endocrinologist with all the issues you have- although finding a sympathetic one may still be an uphill battle!
I've currently taking Colecalciferol 400unit / Calcium carbonate 1.5g effervescent tablets - 1 tablet twice a day. I'm treating myself with B12 as I thought previous blood tests were low, GP didn't agree. I take 1000mcg B12 once a day. Folate is being checked in next blood test next Wednesday. I'll try Vit C and magnesium - I'll try anything lol. Thank you !
Oh good- b12 dosage seems fine- but if it’s tablet ? Then spray or injections should work better.
Also without correct folate dosage extra b12 supplementation is virtually useless as it needs the folate to work properly or is just excreted out of body.
So vitD you’re taking is 800 units a day in total? I would say that’s probably still fairly low if you’ve been deficient before - I was told by my GP 1000iu maintenance dose through year - I currently take 3000iu in winter. You may want to top up with a vit D with k2 supplement on top of your vit D with calcium supplements ( as you don’t want to add much more calcium)
I take the 1000mcg vit C with zinc effervescent tablets and use magnesium oils sprays and some natural supplements. Def look into adrenal insufficiency.
I had some absolute shocking news yday that would have made me completely breakdown normally but I am completely calm and stable (!) result!
Again worth retesting the above supplement levels first (vit D folate ferritin etc before adding more supplements ) if your folate is low best week that may explain it
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
As you have coeliac your gut function will be compromised and vitamins can be very low
You need referral to recommended endocrinologist, email Thyroid UK for list of recommended thyroid specialists
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Help please with blood test results
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