I'd appreciate your comments on my latest blood results.
Pre-story: diagnosed with hyperthyroidism in Jan. Never tested for Graves relAted antibodies, so Graves is only suspected. Ive been on carbimazole since January : 40 mg in Feb, 30mg in march, 20 mg in April.
Please find below my recent results. Began feeling down and achy in the last two weeks. The test was done at 12:30pm after breakfast .
As of 29.April:
TSH 0.94. ( 0.30-4.20)
T4FREE 10.7. (10.5 - 22.8). It was 15.2 in March
T3FREE wasnt tested ( a month before that it was 5 (3.1- 6.8)
Vit D, B, folate has been improved according to the test in the mid march.
My TPOab always show <15. (0-34)
Am I going towards HYPO?
Just reduced my carbimazole to 10mg.
My ALT is always high (liver function) . Does anybody know would carbimazole affect it?
Also lymphocytes and leucocytes are lower than the supposed range. Should i be concerned?
Thanks in advance
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tromashka
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Suggest you get FULL thyroid and vitamins tested...including BOTH TPO and TG antibodies
And TSI or Trab antibodies to confirm (or not) that this is Graves
Very low Ft4 suggests hypo ....obviously need Ft3 tested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, with Hashimoto’s and Graves
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Hello , thank you very much for the link.I'm in Ireland. No Medichecks here unfortunately. I will try to request test results from previous years re ALT. It's been out of range in 3 out of 4 blood tests. 3GPs dont comment on it. Trying to figure out how important it is.
If its Graves, it would be good to know your TRAb levels. TRAb can cause symptoms or make symptoms worse. It also has other uses in relation to Graves treatment.
If you need to know how others in Ireland test outside the system, just post and ask. It's a big helpful community here.
Hi tromashkaIf you are not strictly gluten free it might be worth asking for a coeliac blood test screen.
My own son had very high liver function tests before he was diagnosed coeliac , his liver function returned to normal following his diagnosis and his sticking to a strictly Gluten free diet.
Coeliac and thyroid are often both auto immune conditions.
Thank you for that info. I asked my GP. She dismissed my concerns. According to her if i dont have problems with my stool there's need for coleiac test. Any tips how to convince her? Or is it not GP at all i need to ask?
I'm not sure how you will go about convincing your GP if she's already made up her mind, they can be stubborn beasties !!I went with my son when he went for his follow up after his coeliac biopsies and I mentioned the raised liver enzymes to the doctor at the hospital, she completely dismissed my concerns despite me having a BMJ article on my phone. ( I was very lucky as a friend is a GP and she'd found the article for me, she said she'd never heard of raised liver enzymes before in coeliac disease and she had been a GP for almost 30 years, fortunately she's not so arrogant to think she knows everything !).
When the doctor at the hospital wrote to my son's GP she mentioned that raised liver enzymes were a symptom of undiagnosed and untreated coeliac disease, so maybe she went away and looked it up.
Hopefully it might have made her think more carefully in the future .
Providing you are eating plenty of gluten rich foods it might be worth having a private coeliac screaming blood test and if it proves strongly positive at least you'll have something to take to your GP.
Good luck going forward, it's a bit of a minefield, and we have to fend for ourselves a lot of the time. I don't want to worry you unnecessarily it may be nothing to do with coeliac disease but I wanted to make you aware of the possibility.
Thank you very much!!! I find it very stressful going to those GPs.
Is there any chance you have a link to that article handy? If not, no worries, I'll google info anyway.
Thanks again. Very interesting.
I hate going gluten free as i suffer when i have to restrict my diet in any way. I also heard AIP is not for everybody. I'll definitely look into the test.
I think this is the article, I don't have the phone I saved it on any more, but I know it was a BMJ ( British Medical Journal ) article and this one seems to fit the bill.
It mentions coeliac disease and raised liver enzymes a few times. I hope it is useful.
If you google raised liver enzymes and coeliac disease there are quite a few different sites you can check out.
I am also gluten free as I have auto immune thyroid disease, and recently bought a brilliant cookery book called "How to make anything Gluten Free" by Becky Excell.
I can honestly say the recipes in this book can convince even the most ardent gluten eaters that they are not missing out in any way.
Well your TSH is rising & in range that’s good, mine took 18 months to start to rise.
Your T4FREE 10.7. (10.5 - 22.8) is barely in range any lower & you’ll be dropped below range in which case you would classed as hypo.
Unless T3FREE Is still fairly high you would likely be feeling many symptoms. If that already below you’ll be hypo.
Reducing carbimazole best thing to do but retest in 6 weeks as you may need further adjustments.
Liver issues with PTU is a stronger concern but carbimazole is reported to induce issues with liver, pancreas and blood cells in exceptional rare cases.
Carbimazole tends to cause drop with Neutrophils. Doctors don’t tend to be concerned unless severely below range repeatedly. They do not routinely monitor for potential issues but suggest full blood count be ordered for sore throat, mouth ulcers, bruising, fever or feel generally unwell.
Had you had further scans revealing any answers for you?
GP refuses to retest every 6weeks, I'll have to pretend ill and go to different walk-in clinics to qualify for tests.
😪Ive had both regular ultrasound and RI uptake, but the results wont be revealed till I see my endo in 5 weeks.
🙄I just remembered a week before the test i forgot to take my carbimazole for two days. Sure it couldnt activate my TSH so promptly. A month ago it was still close to zero.
I cant find anywhere to test for Graves antibodies. GP says the lab wont do it for her. Strange!
When you saw the endocrinologist were you told what you were being treated for and have you the medical evidence confirmed through over range and positive antibodies.
If your antibodies are still raised it's pointless doing much except put you in this holding pattern with anti thyroid medication and think the NHS generally allocated around a 15-18 month window for treatment with AT drugs.
The reality is, it takes as long as it takes, and antibodies do not respond to NHS guidelines.
The Carbimazole is blocking your own thyroid hormones rising any further and as your levels start to fall back down some patients are treated with Block and Replace which simply means as the AT drug Blocks your T3 and T4 a measured dose of T4 and added back into the mix to Replace some T4 so you don't fall too far into hypothyroidism.
Without a T3 and T4 result from the same blood sample it's difficult to say something conclusive.
I read some patients do get regular blood tests to monitor the side effects of AT drugs, I'm sorry, I don't know enough and my treatment now just a 2004 " blur " .
I remember being told prior to taking Carbimazole that my white blood cell count was already at 4 and the bottom of the range, so apart from giving me something else to worry about I was told to go to A & E if any new symptoms developed as detailed on on the PIL.
I was seen by Endo and wasn't tested for Graves related antibodies. I was just given a plan how to take carbimazole and the specialist recommended ( on my demand) to test for antibodies in 4 months time. 💩
Yes, ultrasound was performed re a couple of small nodules.
I'm trying to push for full panel testing but nobody in that medical world listens to me.
In Ireland i dont see an option for proper private testing. Other than letsgetchecked . Have you ever used that company?
I'm in the uk and use Medichecks for private bloods :
Now just yearly as thanks in the most to this forum and Elaine Moore's Graves Disease Foundation website and her personal input to me, pretty much sorted - I hope - on Natural Desiccated Thyroid hormone replacement after RAI for Graves back in 2005.
Is it worth putting up a post asking for PM's as to an endocrinologist in Ireland and the facilities available that other patients have found works for them ?
There was a post recently of someone being prescribed NDT - which is what I am having to buy for myself as in the UK its generally a No No - irrespective how unwell you become : so there maybe someone there who is open to helping rather than hindering patients with this no comment attitude.
So you still don't know if you have Graves, or Hashimoto's or nodules causing your unwellness ?
Yep, still no clue. All I hear from my GP is that I'm pushing too hard, it's a long lasting problem that will be with me for a while and that I need to relax and stop reading. 🤷♀️ IMHO first diagnosis then tell me how long it'll be ( or wont) with me
😆... Yes, I'll try to post separately re testing options again. As far as i understand it's either good proactive GP or nothing in Ireland.
It's ironic really as being left in limbo isn't good for anybody's health and having the onus put back on you for " pushing too hard " is quite ridiculous .
If we are looking at Graves it's said to be stress and anxiety triggered and driven, so this sort of attitude just exacerbates the patient.
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