Sorry for the long winded post. I was diagnosed with Graves/ Hyperthyroidism in Oct/Nov2021 and was prescribed 20mg Carbimazole and 40 mg Propanolol
14/12/21
TSH 0.01 (0.27-4.20)
Ft3 12.7 (3.10-6.8)
FT4 23.9 (12-22)
27/01/22
TSH 0.01
FT3 11.6
FT4 27.3. - Endo increase Carbimazole to 30mg for two weeks and remain on Propanolol
By 13 Feb both my achilles which i had injured 2.5 years ago had suddenly healed and i had no pain. I felt wonderful, less anxious, no tremors.
3/3/21
TSH 0.01
T3 5.5
T4 15.7
Range have been same as above. Advised by Endo to continue on 20 mg Carb but reduce Propanolol over 3 days and then stop taking them. Felt great but getting fatter by the day. 16/3/22 Felt achey and tested positive for Covid. Had mild symptoms but mega anxious but Dad was admitted to hospital.
26/4/22
TSH0.01
FT3 4.9
FT4 15.1
21/6/22 Weight piling on was 11st 11 now topping 13stone 9lbs. Even though been eating very sensibly. Sweats are terrible. Achey knees and hips and strange pains going up both my shins.
TSH 7.99 (0.27-4.2)
T3 -3.7 (3.1 -6.8)
T4 - 10.4 (12-22)
Endo called to say now hypo and to reduce to 10mg Carbimazole. The trouble is I never know when she is going to call and it is always when I am out shopping and not prepared for her call.
When i had my first appointment she felt that as my Trab antibodies were high. i think they were 29, she didn’t think I would go into remission and that i may at a later date need to think about other options. Is it normal to swing from hyper to hypo or should my meds have been reduced as soon as i went back into range. My bloods were taken at the same time as all my other bloods - 9am
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Ideally you are monitored carefully enough to ensure you don’t swing from hyper to hypo.
Between Jan & April you felt good by the sound of if & by April Your (levels were about right & no disproportionately high FT3 which was showing at the beginning of year with FT4 slightly high FT3 very high. It is probably why they left at 20.
Perhaps they should have reduce it then slightly to prevent it descending at similar rate.
I’m starting to believe doctors do it deliberately as they want levels low so TSH responds quicker.
I also fnd they ring when not expected to. Even calling early for pre planned telephone appointments. If we’re not prepared we don’t have our questions ready. They can be done quicker.
How frequently are your levels checked?
Now the dose have been adjusted hopefully that will bring levels back into a better level.
Doctors often say they don’t believe remission is possible, then they rush to drive down level, making you feel unwell.
Rush to reduce doses - also making you Ill. then they rush to get you off the medication by 12-18 months (their aim). Then when levels aren’t under control then they say you can’t achieve or maintain remission & have to agree to RAI or surgery.
Don’t let them be reckless with your treatment or rush you into irreversible treatments.
Hi Purplenails, I have had blood tests every 6-8 weeks since being diagnosed, however the last test , i think was about 8-9 weeks. How often would they test for Trab antibodies and what level does this need to be, to be in remission. Or is it just when you have remained stable for a certain period? Sorry for the questions but I am trying to understand. I truly appreciate all the support and advice. Thank you
6 - 8 weeks is about right once your consistent stable doctors seem happy to leave it 12 weeks.
Often TRab is never repeated as it is purpose is used to determine diagnoses. There is research showing the lower the levels becomes the better chance you have at staying in remission but there is no defined limit.
Well yes your results look fairly typical and your metabolism is now running too slow for you.
Being on the AT drug is a bit like being put on automatic pilot - it's blocking your thyroid hormones rising any further and buys you time during this first phase of the disease.
It takes great skill and experience to balance raging antibodies, both stimulating or blocking at any given time with the AT drug and the reality is blood test results run behind symptoms.
The Carbimazole is controlling your metabolism and now you are dealing with too low a level of T3 and T4 and experiencing symptoms of hypothyroidism.
It is essential that you get your ferritin, folate, B12 and vitamin D levels run as when not metabolising well these core strength vitamins and minerals can nosedive through their ranges and this will compound your ill health even further.
Graves is a poorly understood and badly treated AI disease, there is no cure and you may like to read around what you can do for yourself in calming down your immune system response.
Graves is said to be stress and anxiety driven so looking at work / life balance might be a suitable first place to focus on and it's also interesting to read of more holistic and alternative treatment options to calming down your immune system -
There are forum members who have been on the AT drugs for very many years and in times of stress, restart the AT drug to support them through a stressful period. and since we are looking at an AI disease this seems the logic solution.
Others get advised to get definitive treatment by either having their thyroid surgically removed or given RAI thyroid ablation and with both these options the patient is then hypothyroidism and reliant on medication everyday.
The NHS believe hypothyroidism is more easily treated and managed in primary care, and so you will still have Graves Disease but with the victim, your thyroid, removed, it's now not considered life threatening or requiring hospital management.
In primary care there were 3 main thyroid hormone treatment options routinely prescribed but now in 2022 we have just 1 - though all three options are widely recognised and available in most other countries in the western world,
Please obtain a copy of your TR ab results and ranges for reference as you go through this phase :
How are your eyes, any issues there, dry, gritty and or light sensitive ?
Dear Pennyannie, hope you are keeping well? Thank you so much for taking the time to reply to my post. I will definitely get my vitamin and mineral levels checked. i think i have seen information on here about where to get it done privately. Luckily my eyes seem to be ok; they do feel achey and sensitive sometimes but had them checked at Opticians and all ok. i just wish i had the money for liposuction to erase the growing mound of fat round my tummy and backside lol.
If you can go into Thyroid uk the charity who support this forum thyroiduk.org there are sections on all things thyroid, one of which details the private companies who will run the blood test for you if your doctor isn't able.
Since you are currently in treatment, some endos and doctors seem able to run these additional tests but with the current situation maybe paying privately will be faster, though your medical team are not obliged to accept private blood tests, unless run at NHS recognised laboratories.
You may well be in the NHS ranges, but not optimal, and all we be explained when and if you post the results and ranges.
Be aware that there is a Thyroid Eye Disease charity tedct.org.uk and you can be signposted to specialist units throughout the country where you may well be monitored and dosed by both an TED eye specialist and an endocrinologist.
Just be sure if you ever need any lotions, potions, drop and gels that all products are Preservative Free - even those that have been prescribed.
It's much too soon for liposuction so just keeping dropping the pennies into the piggy bank as this period of hypothyroidism is limited and it's not fat in the true sense of the word and more likely excess fluids.
Your AT medication needs titrating down further and hopefully you'll find an even keel between hyper and hypo in the not too distant future.
Thanks for the sound advice Pennyannie. I just have to hope and pray that it won’t be long before i stabilise in my optimal range. So grateful for the information. This is such a fab support for us all .
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