I was put on 200mcg of T4 Levothyroxine and 20mcg of T3 Liothyronine per day after a myxoedema coma.
For about 8 weeks I felt great! Then I started to experience a severe return of my hypothyroid symptoms. It got very bad, I was freezing, my body was trembling non-stop, the constipation returned, and I could barely get out of bed I was so exhausted. I couldn't take my children to school or prepare meals, they had to free range from the kitchen and I completely lost my appetite and had to force myself to eat. I tried contacting my endocrinologist and GP but couldn't get hold of either of them, despite leaving messages explaining things were dire. I considered going to the emergency department but didn't want to as there was no one to take my children so I tried to wait it out. As I couldn't get medical help I self medicated with T3 every four hours until the trembling calmed down and I didn't feel so cold. I was taking 100mcg of T3 every day for three days and then 80mcg of T3 for four days after that and then was able to take 60mcg and then 40mcg per day.
I'd like to know what could cause the medication to create hypothyroid symptoms in such an extreme way? Also those high doses of T3 did not once create a single symptom of hyperthyroidism, no sweating, feeling warm, racing heart or anxiety.
My GP and endocrinologist are very unhelpful, not even sure how they managed to qualify.
I'm now self medicating on 200mcg of T4 every three days, though I think I would like to lower this. I also take 40mcg of T3 per day, 20mcg at 7am and the other about 9 hours later when I start feeling cold and confused again (forgetting what I'm doing, effing up typing and making a hundred typos, forgetting my kids names etc.). I prefer 60mcg per day but don't want to run through my prescription too fast.
Thanks for your thoughts.
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Your story is shocking, quite disgraceful. They should have looked at your case history and seen that you had been diagnosed with hypothyroidism. Your clinical presentation should have triggered a thyroid function test. This amounts to negligence and the subsequent (forced) psychiatric treatment are abuse. Although you might have grounds for compensation claims etc. I feel it is more important to get well. I would do two things.
I would ask for a complete copy of your medical history including all blood test results. I believe they may be able to charge up to £50 for this but you might point out you have suffered considerable harm and abuse due to negligent care and so they might wave any charges (the subtle implication being they better not anger you). It is a good idea to use the term ‘negligent’ as it carries legal weight.
It might also be a good idea to get your MP involved or someone of similar standing. You could speak to them directly (not a letter) and give a summary of your care and ask them to write a letter requesting that you be given all necessary assistance to get well. This might have two benefits; it might get you half decent care and most importantly it acts as a deterrent in case they should take a similar attitude in future.
If there is a relative or friend who can act as an advocate (and witness) for you it would be a good idea, preferably someone who can be polite but assertive.
As regards RTH caused by endocrine disruption by PBDEs or other EDCs I suspect it is not the cause of your hypothyroidism. These endocrine disruptors inhibit thyroid hormone action will little or no effect on the pituitary, TSH is normal. In your case your TSH was extremely high and thyroid hormone levels very low. It is always possible that two problems could occur at once and as you have purchased the simeticone I would continue with it for three months. It is relatively cheap and safe so there is no harm in giving it a go provided you leave a few hours between your thyroid tablets and the simeticone. I wouldn’t mention it to your doctors as I must admit the idea of taking simeticone appears loony! I studied maths and computing so when the logic pointed to its use I had no problem.
It is possible that you have RTH caused by mutations of the TRB gene, a gene that produces the thyroid hormone receptors TRB1 and TRB2. This usually presents with elevated fT3 or fT4 and a non-suppressed TSH. These patients often develop a goitre. In some cases, the thyroid packs in under the strain of having to produce excess hormone for many years and then of course fT3, fT4 will fall and TSH rise. On the other hand, your extremely high TSH (246.60) is not consistent with this form of RTH. It could just be that you have had a duff thyroid for many years and now it has packed in. It’s not unusual for thyroid hormone to work for a month or two and then we need more, this happens to quite a lot of us. I suspect this is because TSH comes down when we take hormone tablets and the body misses it, although your dose would seem to make this unlikely.
If you have RTH caused by a TRB mutation I would not blame the doctors who treated you when you were a child. During the 1990s RTH was in the early research stages and it was not until the 2010s that it became known to ordinary endocrinologists. As I say I suspect this is not your problem. However, this usually runs in families so if you have close relatives with thyroid problems it would be worth while trying to get hold of their blood test results and looking for high fT3 or fT4 and non-suppressed TSH (a TSH that is normal or slightly high).
So, I would trial the simeticone for a while, get hold of your medical records, get support from your MP and family / friends, and insist that you receive good care from now on (you have been the victim of medical negligence). It would also be useful to have your TSH, fT3, fT4 measured now you are on levothyroxine and liothyronine, ideally taking the blood about half-way between liothyronine doses and at least four hours away from either dose. It’s often advised to have the blood taken early morning to get a higher TSH result because it is easier to get a levothyroxine prescription. I wouldn’t worry about this in your case as your TSH will probably be zero anyway, it’s more important to take the blood mid-way between doses so we get a good idea of your average fT3, fT4 levels.
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