Looking for advice for my sister who is struggling with hyper symptoms. Family background is mother with Graves then RAI (from memory RAI followed relatively quickly after diagnosis), me with Hashimoto's.
Until a few weeks ago, sister was experiencing a lot of hypo symptoms: weight gain, tiredness, hair falling out, dry skin. She ran a Medichecks thyroid panel with results:
TSH: 1.8
FT4: 19
FT3 was mid range and TgAb and TPO antibodies were all in range. However, she had not realised about biotin and had taken it everyday in run up to test.
A couple of weeks ago, she experienced three episodes of severe heart palpitations within a few hours and was taken to hospital. Blood tests showed:
TSH: <0.01
FT4: 26
Her fit bit has shown that in previous two weeks her resting heart rate has gone from the 70s to the 90s, and any exertion throws it up into the 120s. She cannot take beta blockers because of other health conditions. She is very weak and struggling to walk more than a few hundred metres.
So far NHS treatment has been much better than my experience - endo referral already organised, started on 15mg carbimazole, and antibodies tests set for next week.
I'd just like to help her prepare and be able to advocate on her own behalf as best as possible. She takes a good Vit B complex, Vit D with K, and iron. Any tips on best diet, best practice for taking medication and supplements (not sure if carbimazole is similar to l-thyroxine in avoiding certain things at same time), and rough idea of what she can expect is greatly appreciated.
Thank you.
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An FT4 of 26 is likely elevated by most ranges we see, but not excessively high which is typically seen in Graves patients. Can you obtain the ranges, so we can be accurate?
She also needs to know exactly what FT3 is doing. Is it equally elevated or out of balance? FT3 could be disproportionately high or even low?
Excellent antibodies are being tested. TPO & TGab are often tested but if Graves suspected TSI or & TRab should be tested as this are associated with Graves.
Has B12, folate, ferritin & vitamin D been tested?
Gluten free diet may be helpful.
15mg is a moderate dose. The FT4 & FT3 need to be retested in about 6 weeks & dose adjusted. Do not allow doctors to dose by TSH as this can remain suppressed even when Frees are low. My TSH hasn’t reached range yet and I have been taking carbimazole & been euthyroid for over 2 years.
Carbimazole inhibits hormone production the existing level still need to be metabolised, which is why frequent testing and dose adjustments is important.
I now take my carbimazole with water an hour before breakfast so I can take lowest dose and get best absorption. Im not convinced it’s really necessary is doesn’t stipulate it should or shouldn’t be. In the past I’ve taken it with food, coffee, supplements & other medications and it’s still worked well. The timing is more important than what it is taken with. Initially spacing the dose out 12 hourly eg 08.00 & 20.00 can be beneficial as it helps reduce the production more evenly. Taking 1 dose is totally safe but leaving a wider gap between doses might allow a window to start producing more hormone.
Once the levels are under more control a single dose is all that’s necessary.
Please encourage her read the patient leaflet several times and be vigilant for the very rare danger signs. Carbimazole is known to trigger some serious side affects and conditions. (They are very rare)
Thank you so much for lots of useful information. NHS didn't test her FT3 but possibly might on her next visit? Medichecks test a few weeks before, FT3 came in at 5.6, so 2/3 of way up normal range. I believe it is Graves antibodies that are being tested but will make sure she clarifies before her blood test. Thank you. Yes, she had all of the usual vitamins and minerals tested through her Medichecks thyroid panel a few weeks ago - was very low in range for B12, folate, and ferritin, and was below range in Vit D.
That's great advice on the staggering of doses. I do this with T3 but didn't realise it was beneficial for carbimazole too. Thank you for all your help.
You are probably aware the NHS test TSH and then lab will only add FT4 & FT3 if out of range. (It referred to as reflex or cascade testing, is saves costs) Even specific request to include them can be ignored / overruled by lab. Once, my specialist forgot to request the TSH. The lab didn’t include it either, which is very unusual.
It might be worth ringing ahead in advance and checking FT3 is specified & exactly which antibodies are requested. The nurse will not have authorisation to alter just prior to the blood draw. Especially as often specialist are left to arrange antibody testing and GPs likely refuse to. We often hear that the wrong or incomplete set antibodies being arranged. Even cases where the antibodies are not even thyroid related at all.
Is the GP helping to treat low nutrients? it’s common for those these to be low with thyroid disfunction.
Thanks again. I'll get my sister to confirm exactly what is being tested and also to get print outs of results. If they aren't testing FT3, we'll get another Medichecks thyroid panel done to cover FT3. She will mention low nutrients but I suspect GP won't help. I've got her on high quality supplements as have similar issues and results to hers. I have filled her in on your first reply and she is very grateful for sound advice.
I'm determined that she will fare better than me. Like so many others, I bashed my head against GPs on thyroid issues for 5 years before I got anywhere. It was a long and painful learning curve. Thank you again from both of us.
The antibodies necessary to be tested, and unique to Graves Disease are generally expressed as a TSI and written as ( a thyroid stimulating ) and/ or a TR abwritten as ( a thyroid receptor blocking ) antibody and without either of these being over range and positive, it's likely your sister is dealing with Hashimoto's like yourself and should not be on an anti throid medication.
If your sister does have Graves the most well rounded website I found was that of Elaine Moore who has Graves Disease and who does also cover other thyroid autoimmune conditions but not is as much depth, as say, Dr Izabella Wentz who has Hashimoto's Disease herself and well respected in her particular field.
Thank you. I shall pass on that website recommendation. Hopefully the antibodies tests will make things clearer. So like Hashimoto's, you can have either, or both, of two different antibodies positive in Graves - good to know, thank you.
Well, the antibodies rise and fall, and there are some people who have both Graves and Hashimoto's running together, and believe Graves takes precedence as it is considered life threatening, if not medicated.
Both Hashimoto's and Graves start with a period of hyperthyroid ;
With Graves the T3 and T4 keep rising and antithyroid medication is prescribe to block further thyroid hormone production.
With Hashimoto's the hyper type phase is transient as the T3 and T4 drop back down by themselves and no medication is prescribed as the thyroid " rights itself ' after each attack from the body's immune system.
However with every attack from the immune system the gland becomes further compromised and production becomes erratic, with the patient likely experiencing symptoms of hypothyroidism, and ultimately as the gland dies, requiring full spectrum thyroid hormone replacement.
If you go into the Thyroid uk website you can read so much more on all things thyroid.
Thyroid uk is the charity who support this amazing forum and where there is always help and support to equip people better to help themselves get better health care.
I'm with Graves post RAI thyroid ablation and became very unwell some 8 years after this treatment and found no help nor understandig through the NHS and am now self medicating and so much better it simply defies one's understanding of health care.
Thank you. I am sorry you received less that acceptable care after RAI - what type of medication are you taking? I am a member of Thyroid UK and, without its help, and this forum, I'd be in real trouble as I am not able to convert T4 into T3 and became pretty unwell on T4 only treatment. I have told my sister to be aware of a sudden swing to hypo symptoms as it could be Hashimoto's too. I had a phase of several months where one or two days a week I felt very hyper and jittery, but every time I went to doctor was a "normal" day. The hypo phase took about two years to fully kick in and stay consistent with symptoms and blood tests. On another health forum, someone dismissed thyroid diseases as being easy to diagnose and treat properly. Not sure I agree with that at all. Thanks for your help and hope you continue to do well.
Well, after RAI thyroid ablation i was on monotherapy with T4 - Levothyroxine for primary hypothyroidism.
In primary care the yearly thyroid function test is just a TSH - which if you have Graves, or in fact an thyroid AI disease, or have had a thyroidectomy or RAI ablation, this one test is the least important of all the thyroid function tests.
The TSH was originally introduced as a diagnostic tool to be used to assist in the diagnosis of hypothyroidism and once on any form of thyroid hormone replacement it's essential to dose and monitor on the T3 and T4 levels with most people feeling at their best when both these vital hormones are in, or nearing the top quadrant to the ranges at around a 1/4 ratio T3/T4 .
So, after RAI I developed thyroid eye disease and found very little help from the hospital consultant. Around 8 years later I found my whole body drying up with my dentist suggesting Sjogren's. After 2 years of various hospial outpatient departments my only diagnosis was low ferritin and I was discharged, disappointed, housebound and still in continual 24/7 pain from having no saliva and unable eat properly.
I thought maybe that Graves had come back, and order Elaine Mooe's first book and read of all my current symptoms being symptoms of RAI treatment and that was my staring point. I then found this forum around 6 years ago and started reading up on everybody else's issue and started eating liver as I couldn't tolerate the prescribed iron tablets.
I believe I was dealing with gastric and oral mucosa and slowly managed to build back up my vitamins and minerals and then I requested other options of thyroid hormone replacement but met with a brick wall.
The more I challenged the NHS system the more this exacerbated my Graves lingering anxiety issues so I gave up and start self medicating.
I trialed both a synthetic T3/T4 combo and then Natural Desiccated Thyroid and have found NDT softer on my body.
It's now been over 3 years medicating with NDT which is the original solution for treating hypothyroidism and was used successfully for over 100 years prior to Big Pharma launching their synthetic options, along with the guidelines and ranges that we are meant to all fit into.
You have been through the mill but I am so glad you have found something that works for you. I have the DIO2 mutation and hope one day I can tolerate the ratios in NDT. It's sad that self medicating is the only option for so many people, but, given the wall of indifference/ignorance of too many doctors, thank goodness it is an option. Take care.
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