Odd symptoms - can anybody relate?

[fumanchu]

Husband been diagnosed 16 years or so, still diet controlled - no meds. No changes to diet etc recently. Odd symptoms -but we can't get him seen by a gp as our practice is seeing only emergencies due to staff shortages. I just wondered if I describe what's going on, and if any of you can relate to it and have any ideas about it, would you please lemme know?
For about ten days his BG readings have been perfect. Too perfect, considering how long diagnosed he is. Readings all in the 6s then this week down to the 5s. He hasn't had regular readings like that for years. Along with this is extreme tiredness and falling asleep all the time. Then also extreme cold, his hands actually hurt with the cold and he feels like marble. Recent bloods showed his thyroid function "way off" and according to the receptionist,who phoned us, he has to reduce his dose of thyroxine, which doesn't make sense to me. (He has been low thyroid and on levothyrox for many years.) Anybody understand what might be going on from this pattern? Or any suggestions for him? He's starting to look a wee bit frail and wobbly and I'm worried.

 

[mouseee]

I would get back on to them and say it is an emergency.
Or, if you have an app to contact the drs I find that really helpful as you can list all the issues rather than be triaged by a receptionist. In fact, I was diagnosed with T2 without even speaking to a Dr until they rang to confirm. If the Dr can read the detail as you've written it here they will be able to make a better informed decision as to how quickly to see him.
If nothing else, insist on speaking to his Diabetic Nurse who can make that kind of decision too.

 

[lovinglife]

I would be insisting that he sees someone, it seems pretty urgent to me with those symptoms. I wouldn’t be taking my medical advice from a receptionist. One of my approaches to life is “the squeaky wheel gets the most oil” so make a nuisance of yourself, keep at them until they see him. I know it’s difficult to be assertive but be polite and firm stating you are both very worried. If all else fails ask to speak to the practice manager, they can’t refuse you, as your GP surgery they have a duty of care

 

[MrsA2]

In the UK, you can also call 111 for advice, and, possible action

 

[Lamont D]

There is always the 111 option.
Or going to A&E.
If he is not feeling well, he is an emergency until he gets sorted.
A receptionist is only trained in speaking to you. And not overloading doctors.

Best wishes

 

[EllieM]

If you describe the symptoms to 111 and tell them that your doctor is only seeing emergencies, they can tell you whether this is an emergency and you can use their statement as evidence to bypass the receptionist...?

As for his thyroid issues, the paper below says its normal to need to adjust/change doses over a lifetime

Levothyroxine Dose Adjustment to Optimise Therapy Throughout a Patient’s Lifetime

Levothyroxine is the standard therapy for patients with hypothyroidism, a condition that affects up to 5% of people worldwide. While levothyroxine therapy has substantially improved the lives of millions of hypothyroid patients since its introduction ...

www.ncbi.nlm.nih.gov

Has the dose reduction made any difference to his symptoms?

Tagging @AndBreathe who I believe has experience of thyroid issues .

 

[fumanchu]

I would get back on to them and say it is an emergency.
Or, if you have an app to contact the drs I find that really helpful as you can list all the issues rather than be triaged by a receptionist. In fact, I was diagnosed with T2 without even speaking to a Dr until they rang to confirm. If the Dr can read the detail as you've written it here they will be able to make a better informed decision as to how quickly to see him.
If nothing else, insist on speaking to his Diabetic Nurse who can make that kind of decision too.

Rural Scotland, practice has no apps, you have to phone in. And no diabetic specialist nurses..

 

[fumanchu]

Yes 111 is an option, and will prob get more sense out of them than the surgery!
Re the thyroxine, I just thought his symptoms sound like he is going lower, and would need his meds upped. Instead, she told him to reduce. I better phone somebody then in case she has got it wrong. Ellie thyroid meds take time to kick in and he's only been on the new dose a few days. so it;s hard to say really.

 

[Antje77]

Yes 111 is an option, and will prob get more sense out of them than the surgery!
Re the thyroxine, I just thought his symptoms sound like he is going lower, and would need his meds upped. Instead, she told him to reduce. I better phone somebody then in case she has got it wrong. Ellie thyroid meds take time to kick in and he's only been on the new dose a few days. so it;s hard to say really.

Did they give you a more specific result than "way off"? Like a number?
Does he have access to his results online?

 

[fumanchu]

No online access in this practice as yet! Will phone them tomorrow!

 

[AndBreathe]

No online access in this practice as yet! Will phone them tomorrow!

When you,call tomorrow, and please DO call tomorrow, please explain your husband is feeling very unwell and that you have concerns for his well-being.

messaging from a receptionist that his thyroid numbers are way off and to reduce his Lego is not appropriate, in my view. (Not appropriate in a receptionist giving dosing advice - whether or on on instruction of a higher being.)

On the call, please get his thyroid blood results. There should be at least TSH and FT4 numbers, although ideally it should include T3 numbers too, but I’d say that’d be annoyingly less usual.

What dose of Levothyroxine is your husband on and what is the suggested new dose?

His feelings of extreme cold and fatigue are classic hypothyroid symptoms, and can happen when under-treated. Over treatment would more often result in agitation and sometimes hot sweats, so reducing his meds could be questionable.

If I were a betting person, I’d say it more likely he needs a tweak up with his meds, rather than the other way, but none of us know the whole picture.

Bottom line is, in my view, he needs a more expert view than a receptionist message.

This sort of thing makes me cross!

 

[Helen H]

I completely agree with @AndBreathe . As someone who has an underactive thyroid those symptoms you describe are very typical of an underactive thyroid. Don’t be fobbed off.

 

[fumanchu]

When you,call tomorrow, and please DO call tomorrow, please explain your husband is feeling very unwell and that you have concerns for his well-being.

messaging from a receptionist that his thyroid numbers are way off and to reduce his Lego is not appropriate, in my view. (Not appropriate in a receptionist giving dosing advice - whether or on on instruction of a higher being.)

On the call, please get his thyroid blood results. There should be at least TSH and FT4 numbers, although ideally it should include T3 numbers too, but I’d say that’d be annoyingly less usual.

What dose of Levothyroxine is your husband on and what is the suggested new dose?

His feelings of extreme cold and fatigue are classic hypothyroid symptoms, and can happen when under-treated. Over treatment would more often result in agitation and sometimes hot sweats, so reducing his meds could be questionable.

If I were a betting person, I’d say it more likely he needs a tweak up with his meds, rather than the other way, but none of us know the whole picture.

Bottom line is, in my view, he needs a more expert view than a receptionist message.

This sort of thing makes me cross!

I def will get his numbers, but they don't do T3s. This is why I'm worried, he sounds low and I wonder if the receptionist got it round the wrong way. He's currently on 125mc a day and she said drop the 25mc pill and only take the 100.

 

[Outlier]

I wouldn't be taking that advice from a receptionist. I hope you get to see a Dr. soon.

 

[fumanchu]

Got hold of a doc, who was very good. He said the blood results showed clearly that he was over dosed and that sometimes this could mimic the symptoms of being under dosed. So agreed to drop his thyroxine from 125mc to 100mc for 6 weeks then get bloods done again, and see how things are. If no change then the next thing would be to reduce his Bisoprolol which is theother possibility. But one thing at a time so we know for sure what's going on. Never spoken to that doc before and we've been here over 3 years!

 

[lovinglife]

Got hold of a doc, who was very good. He said the blood results showed clearly that he was over dosed and that sometimes this could mimic the symptoms of being under dosed. So agreed to drop his thyroxine from 125mc to 100mc for 6 weeks then get bloods done again, and see how things are. If no change then the next thing would be to reduce his Bisoprolol which is theother possibility. But one thing at a time so we know for sure what's going on. Never spoken to that doc before and we've been here over 3 years!

Pleased that you got some help, hopefully hubby will be sorted soon and you can cut back on the worry

 

[AndBreathe]

I def will get his numbers, but they don't do T3s. This is why I'm worried, he sounds low and I wonder if the receptionist got it round the wrong way. He's currently on 125mc a day and she said drop the 25mc pill and only take the 100.

To be honest, my bet would be his TSH may be suppressed, and therefore below range, but once a person takes thyroid hormone, this often happens because of what TSH is and how it works.

Forgive me if you know this already, but TSH is not even a thyroid hormone. It is produced in the pituitary gland and signals to the thyroid to get busy generating T4. When taking (synthetic) T4, this signalling is less critical, because the thyroid hormone is being taken in tablet form.

once taking thyroid hormones, the TSH score is of very limited use, meaning the FT4 and T3 readings are really important.

Fingers crossed for you, and please let us know how you get on.

 

[AndBreathe]

Got hold of a doc, who was very good. He said the blood results showed clearly that he was over dosed and that sometimes this could mimic the symptoms of being under dosed. So agreed to drop his thyroxine from 125mc to 100mc for 6 weeks then get bloods done again, and see how things are. If no change then the next thing would be to reduce his Bisoprolol which is theother possibility. But one thing at a time so we know for sure what's going on. Never spoken to that doc before and we've been here over 3 years!

Ignore my post a few down - timing!

Did your GP give you the numbers that indicate your husband is over medicated? Personally, I feel sceptical about the Doc’s comments, but time will tell.

Whilst it takes around the 6 weeks to show the impacts of a dosage change, please don’t necessarily wait that long if things don’t start peeking up in a couple of weeks.

In my experience, few GPs really understand thyroids. It took me a long time to get mine sorted, and after about 5years, I still don’t think I’m optimally medicated, but at least my Endo does medicate me appropriately.

i do hope he starts to perk up. My major hypothyroidism symptom was feeling the cold. It is utterly miserable, never mind that it’s winter too!

 

[fumanchu]

To be honest, my bet would be his TSH may be suppressed, and therefore below range, but once a person takes thyroid hormone, this often happens because of what TSH is and how it works.

Forgive me if you know this already, but TSH is not even a thyroid hormone. It is produced in the pituitary gland and signals to the thyroid to get busy generating T4. When taking (synthetic) T4, this signalling is less critical, because the thyroid hormone is being taken in tablet form.

once taking thyroid hormones, the TSH score is of very limited use, meaning the FT4 and T3 readings are really important.

Fingers crossed for you, and please let us know how you get on.

That's very interesting, ty. I have a very rare adrenal condition - isolated ACTH deficiency - and something similar happens with people like me. Docs will keep testing the thyroid hormones but in us they will give a false reading. Endocrinology must be one of the hardest things to understand!

 

[fumanchu]

I def won't waste 6 weeks of his life waiting for a blood test if he is still suffering like he has been this week! TY xxx