About 15 months or so, I had an appointment for a thyroid specialist as my thyroid tests pointed towards Graves.
I had been hypothyroid for about 17years when my different results meant my gp prescribing less and less levo. When the amount became 12.5mcg, (after an original 150 mcg) I asked to be seen by an endo.
I had tested positive for Hashi's all those years ago and now I had tested for the Graves antibodies too. Very bewildering, you would have thought they would cancel each other out!
I started with Carbimazole, but unfortunately after several weeks, had to be admitted to hospital with severe constipation, so this was abandoned.
As my thyroid tests seemed to be doing nothing very exciting, with no hyperthyroid symptoms and after an ultrasound which showed slight enlargement with several nodules, it was decided between us to watch and wait.
Unfortunately I had an admission to hospital a couple of weeks ago for an unrelated condition and during this visit it was noted I was tachycardic with a very fast heartbeat and low blood pressure. I still have no sweats, feel palpitations or other symptoms.
Immediately my endo stepped in and has prescribed propylthioracil 100mg twice daily. I am concerned about this as I have stable autoimmune hepatitis and fear this will start again.. This drug is known to be harmful to the liver, so when I arrived home I rang her and told her I would not take them.
I have several autoimmune conditions and my husband is my main carer. Upon learning this, the option of RAI was out of the question as he would be at risk. (?!) So it is now surgery, but until I reach the top of the waiting list, the endo insists I take these tablets. She did agree to halve the dose until my liver showed if or any adverse effect.
One thing she said which I can't get my head round is that even though I have Graves antibodies, she believes it was my Hashimotos that destroyed my thyroid, and the Graves antibodies are struggling to manage, which is why I have to have it removed, If it is destroyed, why does it have to go?
I'm sorry if I sound a bit confused, I just can't get my head around it. Do I still have Hashis and do I still have Graves? My last T4 was 58, range unknown. TSH 0.008. What is going on?
I still have no symptoms, except losing a couple of kgs over the last two or three months.
I feel like I am between a rock and a hard place. I don't understand.
Help please!
Written by
Bluebell999
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Wow you poor thing. I do believe that thyroid conditions are not mutually exclusive. How rare might be a contentious subject because if it is not looked for will it be identified 🤔
There are others far more experienced than I in this field. I am a common or garden Hashis with a below range TSH so out of my sphere of expertise.
I will tag a few people in and see if we can get the ball rolling for you.
SlowDragon RedApple shaws helvella sorry guys need your expertise. Know anyone with this combination who might relate?
I won’t tag everyone in. This is a really good start.
I have edited your title to flag the issue- hope you understand 🤗
I am very confused by your treatment but would definitely advise not to have your thyroid out. I definitely had Graves with very high levels of antibodies. I took anti thyroid medication for a terrible year of it and then gave up and agreed to thyroidectomy. I wish I had known about this site. I would have had more knowledge and kind help. Having a thyroidectomy should be the very last resort and you are nowhere near that yet.
As I understand things - both Hashimoto's and Grave are auto immune diseases -
Hashimoto's only attacks the thyroid and progressively damages the gland and dies with the gland with the patient likely needing full spectrum thyroid hormone replacement.
Graves only tends to get diagnosed when the thyroid and / or eyes start playing up -
it tends to be a stress and anxiety driven AI disease - and there is no cure for Graves which tends to wax and wane throughout one's life - but once hypothyroid - it's considered of little - if any - consequence.
The NHS consider Graves life threatening - if not treated - and if you can't tolerate the AT drugs - definitive treatment - either a thyroidectomy or RAI thyroid ablation - the next step.
I believe I've already sent you the following - but here they come again :-
I would imagine the constipation you talk of as being due to taking too much AT drug :
It takes skill and regular T3 and T4 blood tests and adjustments down of the AT drug to manage the patient when taking an AT drug - and I question what happened back then as to the time line, and your AT doses against the relevant T3 and T4 blood test results.
Whilst your endo has a watch and see approach she is now suggesting 200 mcg PTU daily :
This is probably a stupid question - but how are you feeling ?
You are a complex case with several other AI diseases -
Flipping you from hyper to hypo - fulfils the NHS guideines.
Treatment when you haven't a thyroid is no different to when with Hashimoto's - with T4 monotherapy being the first and only line treatment through your doctor bat the antidepressants.
Should you not do well on T4 monotherapy you will need a referral to an endo for a full spectrum thyroid hormone replacement - and it's not a done deal - and you are between another rock and hard place - as financial constraints rather than medical need seem to out -weigh medical need in some areas of the country.
The safest option is to try and tick over with the AT drug and I'm just sorry you had such a bad experience.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 only - Levothyroxine.
Others find T4 doesn't work as well as it once did - and that by adding back in a little T3 - likely a similar amount to that which they lost when they lost their thyroid - they can restore their thyrod hormonal balance.
Others can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormone as the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
There is a lot to think about - and I would play for time - and since you have no upsetting symptoms - play for time.
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Graves or Hashi, confused and depressed
Is it true that Graves' has no effect on the body after TT?
My GP has Hashi's! Have I struck gold?
