Subclinical thyroid disease for 5 yrs

[honjen43]

My thyroid has caused me few obvious problems in that time, other than varying T3 results.Before Xmas, 2022 I had a radionuclear scan which diagnosed toxic nodular goitre. I returned in January '23 to discuss what Endo want to do. Apparently, my choices are RAI or take Carbimazole. The dose was low, 5mg, so this sounded to me like a better option, and after a period of reflection, I began taking it 24/2/23.

I remember periods of extreme tiredness when I could not stay awake, day or night. I was not interested in eating. I experienced unusual periods of indigestion that demanded I sleep upright at times, and I had minor chest pain and asked my GP if this could be my heart, but he thought not.

I went on holiday, a small boat cruise that offered a French chef, high fat, sugar, acid, and wine! I did not know about the chef before I joined - that was a change to basic cooking offered in the past.

By the end of the cruise, I began to realize my health had deteriorated, even though I had restricted my 'French food" intake as much as possible.

The day after my return home, I dug out a blood test form for if I felt unwell, or 6 weekly test for liver function and T3. I had already concluded I might need to destress my liver, so went straight on to a bread and water diet. I had been feeling very sore , nauseous and pains had moved to right side under ribs, up to shoulders, and down my back between shoulder blades and hip bones.

I had a prompt call from Endo Dr, saying discontinue Carbimazole, your liver is stressed.

5 days later, I have had a 2nd test, my liver is worse, I am dehydrated, my sodium & potassium are very low, my stools changed to peanut butter colour, and my urine has gone orange. I am still at home alone but have been called by my GP as well as 2nd call from Endo and a 3rd test scheduled for next week. I have been drinking as much water as I can, but even that gives me pains in back. Have tried a few other foods, but opted for porage, probably for breakfast, lunch and dinner!

After a week feeling like this, I hope things will improve soon and have not given up thought of getting myself to hospital. I have no energy, and realize that my social calendar is going to take a dive in activity as day outings will not be tolerated!

Sorry for long winge! Hope it might help someone else in same situation.

[PurpleNails Administrator]

Carbimazole induced liver issues is super rare, especially on a low dose.  The only alternative is considered harsher on liver (PTU). 

I hope the liver issue are a temporary blip and will resolve soon.  

I have a large solitary nodule & started on 20mg carbimazole over 4 years ago. currently on 10mg 5mg alternating days. 

The uptake scan showed that you have multiple over producing nodules, but If your levels were sub clinical it likely means your TSH (thyroid stimulating hormone ) was low - but your thyroid levels (ft4 & ft3) were in the normal range. 

The carbimazole temporarily blocks the way the body can use iodine to make new hormone,  keep the thyroid hormone low/er for long enough results in the TSH eventually rising into range.  

In some case, if the rise has been gradual & TSH low for prolong time (eg over 5 years) the TSH can become permanent down regulated.   This happened to me & My TSH never rose even when carbimazole brought FT4 & FT3 below range or kept borderline low several months.    

Doctors focus on the The TSH but it’s a pituitary hormone and should reflect thyroid hormones - but it’s not reliable.  

Tiredness, low appetite & low stomach acid all very common when hypothyroid.  

You are entitled to all your results I recommend you obtain printed copies (with lab ranges) ranges vary so also needed, see what doctors are testing and basing treatment on. 

For full testing you need:

TSH, FT4, FT3 

TPO, TG Antibodies (if hyper were you tested for TRab of TSI antibodies?)

Very important to test folate, ferritin, B12 & vitamin D. 

Your doctor may suggest you agree to undergo RAI treatment as next step - as you can’t continue antithyroid but your other option is surgery. They may imply you don’t have a choice.

Doctors favour RAI as it more efficient as easily administered compared to surgery.  

[honjen43 in reply to PurpleNails]

Thanks PurpleNails. Atm I just want to feel normal!! It has been suggested I need a liver ultrasound to work out what is going on. Don't think I am in a fit state to make any decision about treatment. This one has really poisoned my system. Its results are worse than effects of chemo!I have all my results, just not printed, as printer on the blink.

Jen

[PurpleNails Administrator in reply to honjen43]

Post any you have on here & we can explain

Eg

Date

What’s been tested - The result - The lab range

TSH        <0.01                (0.35 - 3.50 )

[Barb1949]

This is just a thought from reading this post, considering the pains and where they are occuring and the dark urine and pale stools I wondered if anyone has considered gallstones? These symptoms are just like the ones I had. Rich food made mine worse and a very plain diet eased the symptoms.

[honjen43 in reply to Barb1949]

Thanks Barb1949. Had same thought but liver is test they have done and is crying foul. Then again, all are interconnected.Feeling virtually pain-free today before brekkie. First time in over a week.

PurpleNails will post TSH results when have energy. It had apparently kicked into normal range over the 6 weeks I was on Carbimazole.

Jen

[Popeye44]

Have you tried taking Milk Thistle drops to support the liver? There's a good brand called Qualified Naturopath which doesn't contain alcohol, you can get that on Amazon. It's an extremely good herbal support for a struggling liver that's trying to detoxify.

[helvella Administrator Thyroid UK in reply to Popeye44]

Need to be careful taking milk thistle and related products due to effects on the rest of the thyroid system.

Silychristin, a Flavonolignan Derived From the Milk Thistle, Is a Potent Inhibitor of the Thyroid Hormone Transporter MCT8

healthunlocked.com/thyroidu...

Milk thistle - anything to be aware of?

healthunlocked.com/thyroidu...

[honjen43 in reply to helvella]

Thanks, helvella. Good to be aware of that! Jen

[honjen43 in reply to Popeye44]

Thanks, someone mentioned that but I have not done so. Jen