At the end of January I ended up in hospital with low sodium levels and very dehydrated and then suffered 2 fits which resulted in a fractured spine. I was tested for thyroid disfunction and indicated hyperthyroidism though my aunt and grandmother had low.My hospital ultrasound was said by radiographer to be graves disease as I had a goitre and nodule. However, my consultant says not as tested negative for antibody. Second ultrasound showed cyst wasn't cancer as quite large, no mention of graves.
I am on 15mg of carbimazole which Endo says have to take all at once in the morning. I am a lactose free and coeliac and carbimazole contains lactose no lactose free alternative
I have been getting awful side effects pains in joints and muscle especially where I have the fractures. Feeling tired and despairing really. Been on drugs for 40 days and was hoping would feel better but frankly feel better before I take them. My Endo said last bloods in normal range so why do I still feel so awful?
Please tell me there is some hope?
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Beewellsoon
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Do you have any blood tests with ranges and date/times done that include any of the following?
A compete picture of your thyroid health comes from these tests:
1) TSH
2) Free T3
3) Free T4
Plus these vitamins
4) ferritin
5) folate
6) B12
7)Vit D3
These should also be tested - which ones have you had done?
1) TRab
2) TSI
3) TPOab
4) TGab
You are legally entitled to copies of your blood tests. And also, as you will learn, “in range” is not always “normal.” Which is why it’s so important to get the results yourself, vs listening to a doctor say you are “normal” when you know you feel symptomatic.
We can definitely help you, but we need a little more information.
My T4 was 13, TSH .67, T3 3.8. my combined VitD2 and Vit D3 levels were43.2 so on D3 supplement. Bone profile showed sodium alkaline phosphatase was 170, serum globulin was 27. I have never seen my Endo only ever communictes by phone. I used to be fit and healthy now I feel about 96.
You are in good company. We can help you, and help you understand.
Also - yes! There is hope, you will feel better. It may take a little longer than you want it to, but the collective wisdom of this forum will amaze you.
Can you provide ranges for those blood tests? Ie, the T4 (which I assume is Free T4) is either 9-29 or 12-22 or something like that. FT3 range is prob 3ish - 6ish?
What that shows (but please confirm ranges) is that it is most likely that despite being “in range” those free Ts are really too low for anyone to feel well.
D3 (which is the important one) also is low - if it’s what I think it is the range is 50-100 ish? Euthyroid (non-hyper/hypo people) may do well at about 50 but we need closer to 100.
Our faulty thyroids make it hard for us to absorb those 4 vitamins/minerals despite what we eat. And in a slippery downward slope, we need those 4 for optimal thyroid function. And down you go!
However, I’m calling on the smarter minds more familar with carbi, who will also provide plain English explanations of how our bodies and bloods act while we are or appear hyper or hypo.
The most important thing is : You are not going crazy! In fact just this morning I commented on another post remembering my own “I feel 90 years old” period. Your body needs thyroid hormone for EVERYTHING. Literally everything.
Stick with us and you will find great peace in learning what’s going on with you.
Thank you. It's just so reassuring not to feel like an hysterical hypochondriac which is how some people who've never had thyroid issues have made me feel.
Presumably 'ab' means 'anti-body'? But which one? There are mainly four concerned with the thyroid:
TPOab - high with Hashi's/Ord's, but can be present with Graves'
Tg AB - can be high with a lot of things, but very high usually means Hashi's/Ord's
TSI - high with Graves'
TRAB - high with Graves' but can be high with Hashi's
Hash's (Hashimoto's Thyroiditis) and Ord's (same as Hashi's but without the goitre) - aka Autoimmune Thyroiditis - are basically hypothyroidism conditions but with false-'Hyper' swings.
Carbimazole lowers what new hormone can be produced by thyroid so its common to start on a dose taking into account of levels. Then re check levels at 6 weeks. Dose then needs to be adjusted accordingly - otherwise the drop in levels continues at similar rate. Your now in range \ FT3 is very low, so the dose need to be lowered.
Dr may have left it hoping your FT4 comes down more but this could leave you very hypo.
There are 40 carbimazole pills (brands & strength) listed on NHS formulary - are none lactose free?
I wonder whether in fact you do have hyperthyroidism and in fact as greygoose suggests could it be that you have hypothyroidism and experienced a false hyper swing? Especially given your family history of hypothyroidism and how low your levels are now and you’re feeling so rough.
I really don't know what to do as I never see my Endo. Only communicates by phone. I was taking well woman multivitamin as well as B12 spray omega 3 and D3. I stopped well woman as it contained soya. He has given no support on diet or supplements or anything. I feel scared to be honest.
So it reads that you have been prescribed the Carbimazole because of you have been found to have a goitre with a nodule and a cyst - causing over range ' spikes ' in thyroid hormone production -
you seem not to be having any symptoms from these findings so presume your original blood tests results were not ' too high ' - but it would hep understand better what is going on if you could find these original blood tests at diagnosis and share them with forum members.
So it reads you were negative for Graves antibodies -
and the Carbimazole was prescribed to semi block your new daily thyroid hormone production and in the course of the next 40 days your T3 and T4 readings are back into range - but likely now at much too low a level in the range for you and why you are suffering the equally disabling symptoms of hypothyroidism.
Are these results showing a T3 at the bottom of the range at 3.80 and a T4 at 13 after being on the AT drug for 40 days and which your endo says are ' normal ' and has he now reduced your dose of Carbimazole ?
I honestly don't know as I never speak to him. I am on 15mg of carbimazole a day. Due blood tests know 11th before speaking to him on 13th. What should I be asking in terms of bloods?
When I was told by a youngish GP that I was HYPER I had seen my blood test results. I asked him if he thought I was Hyper because my tsh was low - much lower than yours and his reply was Yes. I said I can't be Hyper because my T4 and T3 are within range. He didn't say anymore. I was perfectly polite about it. If you have been put on Carbimazole because of your TSH and with disregard to your T4 and T3 something isn't right. Has the blood test been arranged in the morning before taking any meds?
🥹so sorry to hear about all you have to go through. And joint pain usually comes when undermedicated🥲. Your situation is so complex, just keep asking information from doctors and second opinions and there must be lactofree option for your meds. Wish you all the best xx
Hi, just thought i would mention, when i was on carbimazole i had terrible joint pain, which was a side effect. They changed me to propylthiouracil and joint pain went away. Felt so much better.
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My Endo thinks I'm fine but I don't feel fine...
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