My latest results from 6 July
Tsh. 0.56. (0.35-5.5)
T4. 10. (9-23)
T3 3.7. (3.5-6.5)
I’m now feeling very weak, arms heavy and a little painful in knees and arms. Sickly and pounding in chest in a morning.
Could I have slipped into hypo?
Thinking of making an appointment for bloods asap - endo did say to do this. But only had bloods done on 6 th. Do you think it’s best to get bloods or could it just be my body sorting itself out as on 5 mg.
any advice I would be grateful
Sam x
Looking at previous post
healthunlocked.com/thyroidu...
….excellent detailed reply by PurpleNails
Suggest you get full thyroid and vitamin testing done privately via Medichecks or Blue horizon
You need to test TPO and TG antibodies
Test early Monday or Tuesday morning (not in a heatwave)
Other earlier post 2 weeks ago
healthunlocked.com/thyroidu...
Ferritin is deficient
Folate is deficient
B12 insufficient
No vitamin D result
Has GP done full iron panel test for anaemia
Are you also prescribed iron supplements
Presumably GP has prescribed folic acid
Hi,Thanks for reply.
I’m on iron tablets and folic acid.
Not anaemic when spoke to doc.
They did do a vit d test but haven’t given me results - I take 1000 a day for a long while.
Going to phone docs for a blood test I think as I feel dreadful.
Just worried about what happens next if hypo
X
Your low Ft4 and Ft3 suggest you are hypothyroid
Others who have been on Carbimazole will hopefully pop along and come
Suggest you get appointment with endo to discuss reducing further
It’s never been 100% clear if you definitely have Graves’ disease as Trab antibodies were only just over range
And you don’t appear to have ever had TPO or TG antibodies tested for Hashimoto’s ?
It’s possible to have Graves and Hashimoto’s
Some people are on “block and replace “
Block with Carbimazole
Replace with levothyroxine
Vitamin D
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Come back with new post once you get vitamin D result
1000iu may not be high enough dose
Hi
Thanks again.
I had a thyroid uptake scan which I was told co firmed Graves. Never had the TPO or TG dont no why they never did them.
I have access to records but can only see when they release them - will follow this up.
X
So you could just test Thyroid including antibodies
medichecks.com/products/thy...
But if you want to test any vitamins the advanced test is best option
medichecks.com/products/adv...
Money off codes here
thyroiduk.org/help-and-supp...
Thank you appreciate this xx
Hey there again Sam :
You are experiencing symptoms of hypothyroidism and are now hypothyroid as your levels were very low in this last blood test result from early July :
Without some medical intervention your T3 and T4 levels may keep dropping :
I would suggest you try and see your doctor and ask for ether a reduction in the AT drug or be prescribed some T4 - Levothyroxine to keep your T3 and T4 from falling any further, and hopefully relieve the symptoms being experienced.
The AT drug simply blocks your thyroid hormone production :
It acts like a brake and maybe this dose is now too much for you :
Maybe 2.5 mcg daily would make more sense ?
The alternative is Block and Replace treatment where you stay on the AT drug totally blocking your thyroid hormone production BUT a measured dose on T4 is prescribed so to try and keep your T3 and T4 topped up.
The blood tests results run behind the symptoms being suffered so there is some time disparity with all this - you are clearly not well and need to see your doctor who can hopefully liaise with an endocrinologist as to the next step in this first phase of the disease.
It would be wise to also have confirmed if you also are dealing with Hashimoto's AI thyroid disease and this would normally have been analysed from the first blood sample that came back mildly positive for Graves Disease.
For Hashimoto' s AI disease we are looking for positive and over range TPO and or TgAB antibodies and this may already be on your medical records.
Hashimoto's can run in tandem with Graves - and do not worry as even if you do have this your treatment plan will remain the same as it is now.
Hi thank you for your reply.I have just got a blood test at GPS for 9.30 tomorrow for bloods. This was a chore in itself with the receptionist but I’ll not go into that - I’m bewildered sometimes. She did say I can have bloods took at anytime? I thought before 9 but 9.30 closest I could get. Anyway hopefully the results will be there for the endo on Monday and I’ll call him as now he has said to me that I am to call his secretary who will message him to call me. So I suppose I can’t grumble with that - although I have had a carry on with it all previously.
I think I am hypo too- I hope it gets sorted soon so I can feel ‘normal’ again - my joints are uncomfortable and feel a little quick again.
Why would they not check for TPO and TGab? Who do I ask to do these for me as wouldn’t they endo have done this?
Thank you - I really appreciate your help x
These TPO and TgAB may well already be on your medical records.
Having Hashimoto's doesn't change anything from a medical perspective and your treatment plan does not change, but might explain some of your symptoms.
Mainstream medical have little understanding, or interest in the symptoms being experienced and simply look at results being in ranges and pay little if any attention to results being at too low a level within a range.
Do you have access to your medical records and can look back or maybe ask the receptionist or nurse tomorow to look back for you, or ask the nurse to put the Hashimoto's antibodies TPO and TgAB on the blood analysis form tomorrow.
I’ll ask them and thank you x have a lovely day x
I'm hiding from the sun - with black out blinds way down - trying to complete a nearly rubbed out twice Suduko !!!
Take good care :
😂😂pouring down and cold here ! X
Wish we could swop - it's very dry here in Cornwall :
Ask nurse to include testing of TPO and TG antibodies in tomorrow’s blood test
Thyroid Peroxidase Antibodies (TPO Ab)
antibodies that attack the thyroid peroxidase enzyme . The levels of these are raised in Hashimoto’s disease (and can be slightly raised with Graves’ disease too)
Thyroglobulin antibodies (TG Ab)
Antibodies that attack thyroglobulin. The levels rise as well as the TPO antibody level with Hashimoto’s. (Can be slightly raised with Graves’ disease too)
Significant minority of Hashimoto’s patients only have high TG antibodies
NHS won’t test TG antibodies unless TPO antibodies are high. So if TPO antibodies are negative you would need to test privately to check TG antibodies
Your levels may be very low if naturally dropping & carbimazole lowering levels further.
It’s sometimes hard to judge because carbimazole changes can take time to have effect. Carbimazole only reduces new production not existing hormone levels.
You may even need to stop carbimazole, or take every other day - sometimes doctors don’t like to stop completely (even with low levels) because there’s a concern the immune system will cause the thyroid to “take off” again.
You do have TRab antibodies & uptake scans are conclusive at diagnosing Graves. You may have TPO & TG antibodies ie both Hashis & Graves which might cause more unpredictable fluctuations.
So within a few short months on low doses of carbimazole your FT4 has come right down.
Ideally TPO & TG will be tested, no harm in asking them to be added to next blood test, but be prepared they might say can’t be added unless prearranged by doctor.
If you do find you hyper / hypo swing then block and replace can be used.
don't forget that you had only been on current dose of carbimazole for about 5 days when that last blood test was done .. so your T4/T3 levels may have gone a bit higher since then ~ (i'm assuming it may take longer than 5/6 days for a reduction in carbimazoe to show in T4/t3 levels ?)
Thanks for replying. I feel dreadful but have a blood test tomorrow and will speak to consultant for results on Monday . I nearly phoned to speak to him earlier but what good would it do without up to date bloods. Then was going to phone docs for advice about maybe not taking carb tomoz and then again on Monday. Scared if it keeps driving it down. Decided to just ride the weekend out as best as I can - very weak, lightheaded, headache and sad again. Hopefully sorted on Monday x
you're right .. there's no point worrying yourself or discussing it with them until they have up to date bloods to look at to see what your levels really are like on this dose . anything else is just assumption. and could be wrong .
eg . you could be feeling naff because your levels were already coming down by themselves and have now gone really low .... or you could be feeling naff because your levels have gone up again on the lower dose.
Ride it out till you've had bloods back . then you'll see what's what .
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