Bit of a long story so I apologise in advance, was diagnosed with hyperthyroidism in Oct 24 confirmed to be graves disease in nov24 with possitive trab although I don't have the actual reading. Saw endo on the 21st Nov 24. Who said from recent bloods levels had not moved much so to carry on with the 20mg of carbimazole but he did take bloods while at appointment. No idea what these results were. I carried on with this dose till the 19th Dec when I got my latest blood results back.
Tsh 0.41 (0.27-4.5)
T4 11.00(11.0 -23.00)
When the gp rang with results he apologised as he said the endo had advised them after my appointment with him in Nov to reduce dose to 10mg a day. They said they had only just seen it. So to reduce dose straight away, which I did. After about a week of reducing dose I started to feel unwell, very nauseous, tired , low in mood and generally drained. The gp ran bloods for vitamins
B12 327( 197.0- 771.0)
Folate level 1.0 (2.0 -18.7)
Ferritin level 82.2(120-130)
Vitamin d 34 ( levels between 25 and 50 suggest insufficiency)
He's prescribed Folic acid and vit d supplement. This previous week I feel awful but with more hyper symptoms such as heat intolerance, feeling shaky. Very high anxiety. The gp just keeps saying it due to dose change, could this be right? I'm so fed up with it all. Feel so up and down. Just want to feel normal again
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It could be sensitivity to dose adjustments. I feel better with 5mg adjustments - 10mg even when levels are high or low - it’s the changes which seems to cause noticeable symptoms. It wouldn’t have helped that you stayed on too high a dose. Your FT4 was very low on last test.
However there’s no FT3 results & sometimes with dysfunctional thyroid the balance can be disproportionate. ie lower in percentage than FT4 or very high.
Are you due another retest soon? Should be around 6 weeks after an adjustment. I think once you have another set of blood tests you can decide if dose need further adjustment or to stick with it.
If Doctor not completing a full test. I think I’d arrange a private test including TSH, FT4 & FT3.
I'm due another blood test on the 25th of this month. I dont know why the gp doesn't test t3. I work as a community hca so can take bloods etc, I think I'm going to get one of the girls to take this next set of bloods and and t3 to form.
Fingers crossed that works, (& no one get in trouble) but often it the protocols of the lab which decide what’s tested. & FT3 isn’t tested unless TSH & FT4 is abnormal,
We really do need to know exactly which antibodies were found positive and over range in your bloods at diagnosis.
Do you have access to your medical records - if not ask the receptionist at your surgery for the appropriate forms -
we need to find a print out of TPO / TgAB / TSI TRab - with readings and ranges - or maybe a reading such as TSH Thyroid Receptor ab with a single number and cut off value :
Your TSH is back in range to presume this means this phase of immune ativity on your thyroid is over and with a reduced dose of the Anti Thyroid drug your T3 and T4 levels will hopefully rebalance in the ranges without the need for any drugs and with your symptoms alleviated.
What dose of of both Carbimazole + Propanolol are your now taking ?
Hi pennyannie. All I know antibody wise is that tpo was negative. The endo did trab at appointment and the letter just states this is possitive so autoimune in origin, doesn't give actual readings.
Currently taking 10mg of carbimazole daily but I split it between 2 doses and 15mg of propranolol twice a day. The endo recommended this at appointment in Nov as said I still have a tremor in hands.
Ok then - TPO antibodies are for Hashimoto's and even f positive and over range - not treated with an Anti Thyroid drug anyway.
To have been prescribed an Anti Thyroid drug you need positive and over range TRab antibodies and it is good to know - though doesn't change the treatment option - exactly what your results were .
I was only on Carbimazole and read that Propanolol also slows the conversion of T4 into T3 and a difficult drug to come off- so if you are reducing this beta blocker ask on the forum as to how you do this successfully.
It would be your best interests to track your own thyroid readings as then you can see ny pattern evolving and take the necessary action.
As you go through this first phase of presumably Graves - your T3 and T4 should be regularly monitored so you can see where in the ranges you feel at your best - try and aim for around a T3 and T4 at around midpoint in their ranges - as both hyper and hypo symptoms can be experienced within the ranges - by some people -
and the relationship between the T3/T4 is very relevant and should be run even though the cost ( say around a £ 2 for each biomarker it was actually 91 pence in around 2016 ) ) a little more.
When metabolism runs too fast as in' hyper type ' symptoms or too slow as in ' hypo type ' symptoms the body struggles to extract key nutrients through food no matter how well and ' clean ' you eat and non optimal levels of ferritin, folate, B12 and vitamin D can compromise your health and recovery further than necessary
it seems you are in ideal place to write a blood test form and we can advise on the above as just being in a NHS ranges somewhere, anywhere, is not optimal and some NHS ranges are too wide to even be sensible.
Thyroid UK the charity who supports this patient to patient forum has a website full of all things thyroid and a list detailed both hyper and hypo symptoms - some symptoms do over lap - it can become confusing - so maybe use this very detailed check list as to your symptoms.
Your TSH has come into range again but your T4 is very low now. As others have mentioned, it would be good to get the T3 tested to see where you are.
I think your hormones might have gone the other way and that you would actually need some form of replacement (block and replace). Low thyroid hormones can be a cause of anxiety as well as high levels. And feeling drained, low mood and generally unwell would actually tie in with being hypothyroid.
Also, your folate levels are far too low and your B12 could be a bit higher too. Your Vitamin D level should at least be 75nmol/l or higher, as this will help with the conversion of your T4 to the active T3 hormone. The GP might not prescribe a high enough dose and they usually stop prescribing when levels reach 50nmol/l. You should also supplement with Vit K2 when taking Vitamin D, as this helps to direct the calcium from your diet to your bones.
Just a note, folic acid supplements do not work for everyone, especially if you have absorption problems. Many people here take methyl folate in the form of a Vit B complex, as B-vitamins should all be balanced to work best. Ignennus Super B-complex or Thorne B-vitamins are often recommended.
Once you get your T3 result and it is showing low levels too, I would try to discuss a block and replace with the endo, otherwise you may continue to struggle.
Block & replace is usually 2nd option. & some specialist are less confident to use it even when theres a clear case it might help.
It’s might be suitable if levels fluctuate unexpectedly or if FT4 : FT3 levels are at either ends of their range. So getting 1 measure in range causes the other to be out of range.
I’m not sure it’s suitable here, only because with the information we have it looks like FT4 is low because the dose was not correctly reduced.
There’s still a good possibility the levels to settle.
First approach is always to titrate & has the benefit of allowing the lowest possible dose to be taken. It’s also allows tracking of natural levels & signs of remission. B&R conceals what’s going on.
No worries, it just looked like the T4 is very low and that would make people generally feel unwell. Hopefully with the reduction of the carbimazole the levels do bounce back.
It seems to me though that they tend to keep the carbimazole quite high for a long time, shouldn't they be a bit quicker in reducing the levels when the free hormones are getting quite low? And also, why don't they measure T3 - seems to me a bit counterproductive not knowing what the actual active hormone levels are?
FT3 should definitely be tested but drs are taught to go by TSH. low thyroid hormones are increased very gradually to not shock system & allow TSH to adjust - but drs panic as high levels (low TSH) & think they must be crushed ASAP. Unfortunately TSH doesn’t respond that quickly & low FT4 & FT3 happens when drs are looking at unreliable TSH.
Almost all the drs ive encountered were determined to increase carbimazole based on low TSH. Except from 1 GP who said specialist said your TSH will always be low your Frees are “in normal range” so everything’s fine. My FT4 was 95% of range. I was functioning but headachey & he refused an carbimazole increase. Then offered 5mg extra a week because I pointed out the specialist letter said FT4 levels should be mid range. 🙄
It is usual for HCPs to not react quickly and also to not look at the actual free levels of T4 and T3.
In November, although your TSH was still very low, your T4 had a significant drop and was 66.7% through the range. This is why it would have been very interesting to see the T3 there already and it may have been that your T3 was already in range. So the endo could have started to slowly titrate your carbimazole down then already. It would be really interesting to see the results from the 21 Nov at the endos, especially since he has done the T4 and T3. I suspect the T4 was further reduced together with the T3 and hence he finally suggested to titrate down.
A very low or suppressed TSH is generally classed as subclinical hyperthyroidism, which sticks in their mind and they do not often consult what the actual T4 and T3 are (even when they are super low!), which is really not helpful.
To what extend your T3 is reduced is difficult to say, as this is an individual thing, it could be that it is lower in range like your T4 or it could be a bit higher in range, as sometimes T3 goes a bit higher in range to compensate for the lack of T4. I suspect though that it might be low based on your symptoms, low T3 is very much associated with low mood and low energy.
I hope that the reduction in carbimazole will show an effect soon and that your levels will go higher again to a place where you feel better.
Once you finish prescribed folic acid, look at adding a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
Post discussing how biotin can affect test results
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