My friend has had Hashimoto's for more than a decade, and increasingly can't tolerate Synthroid or (and especially) the natural medication. Last time he took the natural one (a week ago) he developed severe swelling in his feet, ankles, some in the legs and felt it in the hands. He's had minor, but painful, foot swelling and pain for years after exercise or standing, but this recent bout was off the charts. His THS is 15, obviously very high, but he usually feels terrible after taking the medication and takes it once a week or so. He is exhausted and gets migraines and muscle pains. Could he have bi-glandular disease? (Hashimoto's and Addison's disease combined.) That might make him react badly to the thyroid medication. The question is, why does he feel worse after the medication? At this point he seems to have reached Myxedema stage but is not in a crisis. (He's 53.) Doctors here are neglectful, they are not paying attention and tell him to take his Synthroid and go away, basically.
Francis: My friend has had Hashimoto's for more... - Thyroid UK
Francis
He could be sensitive to one of the fillers. There is liquid levothyroxine which would be worth trying. This avoids a lot of the fillers. Unfortunately if he doesn't take the thyroid hormones his health will continue to deterioate so it's really important this is addressed. He needs to ask his doctor to check his iron, b12, folate & vit D levels too. Commonly low in untreated of under treated hypothyroidism.
That might help, yes; I had mentioned that in passing to him a while ago, and will mention it again. He has difficulty getting a doctor to do more than routine blood work, but will remind him to try again - they did do vitamin D levels and they were low, so others could be, too. Thank you for responding!
He may need someone to step in on his behalf.... When hypothyroidism is left untreated and becomes more developed it does affect someone ability to think clearly as well as physically. It's actually one of the things that psychiatrists checks for on admission of patients into psychiatric care. He maybe struggling to process more and his memory will be affected. So he might find an advocate helpful.I don't know if a GP can prescribe liquid levothyroxine but they should be able to consult. The only other option is to go private. I did this & frankly it Wass only then I got onto the most appropriate treatment & eventually the optimum dose.
Yes, I think he isn't making the best decisions due to his condition. An advocate sounds like a good idea, because his situation is only getting worse and he's struggling more and more with unhelpful doctors.
but he usually feels terrible after taking the medication and takes it once a week or so.
Am I missing something here?
Are you saying he doesn't take his thyroid medication daily/ regularly?
If so, little wonder he is having problems.
What dose was prescribed?
Thyroid hormone replacement for hypothyroidism must be taken daily for life.
The dose and daily timing will depend on his body's needs and his lab test results.
Myxedema is the term for severe hypothyroidism and soft tissue swelling is a symptom....it is usually confirmed by lab results plus clinical evaluation.
Myxedema coma is a medical emergency leading to decreased mental status, hypothermia, and other symptoms related to the slowing of function in multiple organs. Is this what you mean by ' in crisis"?
It's possible he feels worse because an irregular dosing pattern will make a poor situation worse, as the system becomes confused and struggles to function
Did you mean TSH rather than THS....if so he badly needs to be medicated with replacement thyroxine, with TSH 15.
This may help
thyroiduk.org/if-you-are-hy...
We have no background details of his condition or treatment so can only advise that he has a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg
This can be done privately, with discounts available.
thyroiduk.org/help-and-supp...
However I suggest he visits a GP for advice, immediately.
If I have misunderstood your comment copied at the top of my reply I apologise!
Good luck!
I read it the same- it’s surprising how many people are not properly briefed as to their condition and the fact that to take a thyroid hormone replacement daily for life is non negotiable. Choice doesn’t come into it. My doctor told me nothing. But then they didn’t have much of an idea anyway. Remit us just way too broad to be effective.
The problem here, is that he already feels terrible, and feels that after taking the Synthroid there is a lot more pain and swelling and major exhaustion. His dose is 100 mg but he takes half or less because he says he feels ill afterwards and it takes him days to recover. He is searching for a GP who will do more than tell him to take the medication, though I agree that this is essential because he is already in trouble and yes, the next stage could be life-threatening. The big question is: does he have a co-morbidity that could be making him ill when he takes the Synthroid? The previous person suggested he could be reacting to the Synthroid, which could be correct. He also reacts badly to the natural hormone, but that could be because it has both T3 and T4 and has a stronger punch.
I found my body complained a bit when I was going through the process of getting up to full replacement dose. It could be the excipients (fillers) the pills are made of. Many of us find a brand we can cope with and get that brand fixed.
I was left on 25 µg for six months and at 15 stone. I did not need that! 25 µg is sufficient for a person who weighs 2 1/2 stone. So I wonder if the ride gets a bit bumpier when we have been starved of thyroid hormones?🤔
Many people have to ride the storm storm so to speak to get full therapeutic dose and will experience lots of symptoms. If he has never actually pushed through, he may be experiencing the symptoms of his body waking up to thyroid hormones again.
The fact he struggles with natural hormone also might point to this….
Tolerance might improve as he goes up the doses.
This literally may be one of those instances where he has to tough it out. I think McPammy has a good point below.
Thank you, that's very helpful information!
I'll just add that he's now taking blood pressure medication because it has shot up in the last couple of years, and after he takes the Synthroid, he'll usually take more bp medication as it nudges it up again. (And that's after taking only a quarter to a half of the 100 mcg of Synthroid he's been prescribed.) He's afraid that if he takes Synthroid every day his body will give out, so it's quite a difficult situation. I often wish he could proceed more steadily with the treatment - your point that his body will react very strongly to the Synthroid now that he's been in a deprived state for so long really rings true - but the reaction he has to the medication seems so extreme, that I think he feels it's almost unthinkable that he take it daily. (Though he's aware it's dangerous not to take it, too.) Clearly someone needs to step in because he's in pretty serious trouble. I will show him this discussion! (Sorry this is so long.)
No worries Francis
Ultimately he has to make the decision what to do himself. It’s difficult, but all you can do is help him get as much information as possible so he can make an informed decision. Really hope he gets sorted. 🤗♥️
this use to happen to me when my TSH was far too high. I desperately needed to get the thyroid medication into my body to improve my situation. What I did was to split my dose. I took half in the morning and half late afternoon. Depending on how much he needs. You can even split it 3 times a day. This worked for me. After a week or so my levels went up and my TSH lowered. More importantly I felt much better too. I didn’t get an awful feeling splitting my dose as I did when taking it in one hit. One hit was just too much for my system to cope with. I’ve continued to split my dose now for 4 years. I’ve tried to go back to one full dose a day but they made me feel awful again. So please try splitting his dose. You can take a split dose going to bed too. The main thing is getting the medication in to help your thyroid function. Then the swelling and symptoms should go away once your TSH is around 1.00 and levels are midway.
That's a good idea. I'll see if he might split what he's taking even further, and take it twice a day.
Well said 😊👍♥️
Thank you to the people who responded to my comment! I really appreciate it.
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